I'm a 60 year old men, in excellent health, except for experiencing tremors during sleep that wake me up and have difficulty going back to sleep. As I start to fall sleep again, I feel these "rumbleling" (tremors) around my upper body. I immediately wake up again. These tremors last for about 10-15 seconds after I wake up. The first time I experienced this condition was exactly two years ago. It lasted for about four days and it simply went away. Except for minor incidents (by "minor" I mean I experience the tremors for about two nights and go away) with no major disruptions in my sleep patters. Last week, however, I experienced another episode which does not seem to be going away. The first two nights I simply could not go back to sleep at all. My body wanted to go back to sleep, but, as I mentioned above, everytime I fell sleep the tremors woke me up. I'm on my 9th day and there seems to be no sign of letting up. I went to see my doctor on the fourth day--He prescribed Zolpidem, which I have been taken since. Interestingly enough, even under the influence of the sleeping pill, the tremor wake me up, but they are short-lived since I go back to sleep almost immediately. My doctor said to take the medicine for about two weeks and essencially placed me on a "wait-and-see" mode. My concern at this point is "how long can I possobly survived on this medicine. Does any body "out there" know anything about this condition? As you can immagine, it is extremely debilitating. I'm, for my age, a very atheletic man who is the right things, no vices and bikes to work every day--About
twenty miles a day. Married with two grown children. My job is very stress-free and very enjoyable. Any ideas? Thank you very much.
Hi, how are you? Can you give some more details as to which part or whole of upper body does involve in the tremors you suffer from? Do you correlate with the initiation of these episodes with any particular event? You might be having a rhythmic movement disorder, which more or less resembles the symptoms or even age related. Has your doctor done a sleep study? You need to continue the medication for couple of weeks as advised by your doctor and try to avoid trigger factors like alcohol, smoking and stress. It is better to consult a neurologist and get evaluated. Take care and updated on your thoughts and progress.
Thank you for your timely response. My tremors are pretty much localized in my upper body; say, between my waist and my neck. By the way, something I did not mention on my original description is that these tremors are not external. As I pointed out, after they wake me up they last for about an extra 10-15 seconds and they disappeared completely. During these 10-15 second period, I have asked my wife to place her hand on my stomach/chest so she can feel what I am experiencing. She has never felt anything--This leads me to believe that they are totally interior in nature. I Do not correlate the initiation of these tremors with any particular event/diet/state of mind? I have not been able to determine what precipitates them. I have changed my diet, my exercise routine to no avail. I do have a bit of anxiety, but I truly believe it is as a result of the lack of sleep. My wife thinks that I'm making things worse by turning all the clocks in the house (the ones that chime) off in order to avoid knowing the time so I don't panic by learning that I have ONLY a few hours left before I have to get up and get ready for work. Again, she thinks I am creating a great deal of anxiety for myself. Yes, I have a sleep study two years ago. I did not experience the tremor that night. The sleep specialist sent me to the cardiologist and they order a halter (24-hour monitoring of my heart functions) as well as a cardiogram--Everything turned out to be fine with my heart. After all this, I went back to the sleep specialist and he simply stated that in further review of my sleep study, they determined that when I sleep I do not go into deeper stages of sleep, and he prescribed "Clonazepam." By that time, my symptoms have gone away and I never took that medicine. As I mentioned on my original symptom description, my symptoms disappeared after a few days (6-9 days), except for minor tremors once every three months or so, which do wake me up, but I seem to go back to sleep with no problem whatsoever. I figured I can live with this "minor" inconvenience and not have to take any medicine. But as I mentioned, this time is different. The tremors don't let me go back to sleep, at all. And that's when I "panic" and decided to see my doctor about about the problem. He ordered some blood work to test the functions of some of my key glads. I guess glands that in his opinion could be causing my problem if they are "malfunctioning." He said my lab work came back perfect--No irregularities, whatsoever. I mentioned to him about my sleep study and the medicine they had prescribed (Clonazepam)--He simply said: "I hate to see you taking this type of medicine without knowing exactly what is going on with you--The side affects of this medicine could be more potentially harmful the problem you are experiencing." I cannot think of what can be more problematic than not being able to sleep--But this is besides the point. He also mentioned that he hated to order another sleep study based on the fact that I physically don't meet any of the criteria that will lead him to believe that I need one, i.e., obesity, smoking, heavy coffee drinker, heavy alcohol drinker--I'm 5' 9" and my weight is 150 lbs; I do not smoke or drink. I pedal my bicycle to work every day. Approximately a 20-mile round trip. Stress, however, seem to be creeping up due to the fact that I am getting concern about my health due to lack of sleep. My doctor did mentioned, as you did, that a neurological study might be appropriate, but he wants me to be on the sleeping pills for two weeks before we start talking about those options. At any rate, I know you asked me a few questions/clarifications and I pretty much wrote a book for you. I'm sorry about that. I am simply excited about the fact that someone "out there" has manifested some type of concern about my plight. One more question, please. You mentioned that I could have a "rhythmic disorder." What is that? Thank you again, whoever you are--You are a good person.
Hi bobito, how are you? Thanks for your reply and time you spent in writing a lengthy details. Well, you can be patient for few more days and keep observing the progress of the jerks to see the effect of the drug you are presently taking. Stress is a major factor in triggering the symptoms and worsening the daily activities to sometimes even impossible. You can get a sleep study test done to know your present sleep pattern, which can also be discussed with your attending physician. Rhythmic movements occur during the stage just prior to falling asleep and typically increase along with stress levels. These are most common among very young children. Commonly seen in children but can affect any one, and usually slowly disappears but if presents a danger or the activity persists for long time, it is better to consult an Neurophysician soon to get an evaluation and also to rule out any other possibilities. Take care and keep updating us of your doctor advise.
Your post is interesting as my son-in-law recently described almost identical symptoms that left him afraid to go to sleep for a while. He's only had a couple more mild episodes. My daughter said his tremblings/vibrations are not visible by observation - they are internal.
I've had similar sensations but not while asleep. I blamed them on low blood sugar but never really knew for sure. I have rythmic movements in my legs while asleep, but they feel like contractions or jerks when they wake me up.
Sorry, no answers. But I'll be watching to see if someone else comes up with something.
I have the same thing happen to me sporadically, probably a few times a week. As I'm drifting off to sleep I suddenly get "tremors" in my upper body that wake me up. If I try to go back to sleep there's a good chance it'll happen again. But if I put my hand on my chest I find that my heart's not beating all that fast, which makes me think it might be muscle twitches, possibly in my neck or chest. In any case I"m still trying to figure it out.
I've found that it's more likely to happen if I go to bed unusually early or late (or if I nap), and that a few glasses of wine seem to make it less likely to happen.
BTW I'm a 22-year old male of average height and weight with no real medical history.
Hi bobito, how are you? Hope you are feeling better now? Are your tremors under control now and letting you to have a normal sleep? At your age, as discussed early also stress seems to be a trigger factor due to less activity and sleep deprivation. You need to get evaluated by a neurologist and get investigated. Have you checked your blood sugar and blood pressure? Even an EMG study would be helpful. Taking too many medicines also is not advisable so seek medical advise by a neurologist. Try to go for a morning-evening walk or regular stretches and body massages occasionally. Take warm shower and sleep early. Listening to your favorite music or reading book in a comforting room can put you to sleep. Do update on your progress and any visit to doctor. Take care.
Hi, Suri--Thank you for asking--Actually I'm doing a little better--Allow me to explain why. First of all, I would like to tell you that I took your advise--I talked to my doctor last week and asked (again) about a sleep study. She agreed to it--I'm now in the process of scheduling a sleep study. Most probably I will have one within the next three weeks--Secondly, I raised the issue of a consultation with a neurologist--She agreed to this, as well. She said, however, to wait and see what the sleep study reveals, and then she will referred me to a neurologist--Again, this neurological study will depend on the sleep study results. At that time, I also shared with her the fact that Ambien was not keeping me sleep. The tremors will wake me up about three hours after taking the medicine and I could not go back to sleep. She decided to change my prescription to Restoril. She said to take it as needed. Well, this medicine most definitely worked, but the side affects were simply horrible. I took it for two days and the day after I felt as if I had been on a 5-day drinking binge. In other words, a very nasty hangover. I told my wife that I was simply stoping the medicine and "John Wayne" my situation--For the last two days I have not taking any medicine at all. The first night, without medicine, I managed to sleep for a total of five hours. The tremor were there, all right, but I guess I did not allow them to intimidate me as much as they had in the past. Therefore, I did not stayed awake worrying about them. Last night I slept about seven hours. The tremors woke me up a couple of times, but I simply "ignored" them and I manged to go back to sleep. As you can imagine, I'm very happy to know that I can sleep without the aid of the medicine--I'm looking forward to tonight to see how well I am going to sleep. About my blood pressure, it is fine--On the average 114/70. My resting pulse on the average is 52 Bpm. I think this is due to the fact that I bike to work every day. At any rate, thank you very much for your advise--Your advise is what armed me with enough gumption to go back to the doctor and asked for the sleep study and the neurological evaluation. At any rate, my anxiety has decreased considerably due to the fact that I have actually slept without any aid from medication. I'm somewhat proud of this, which in turn makes me happy. I will love to share with you the results of my upcoming test. Please, enjoy your weekend.
Hi bobito, Thanks again for your reply. It is indeed your determination to do without medication what has proved fruitful. Good that you are able to get some sleep without need to medicine and also satisfactory sleep. You need to continue the same for some more days and if sleeping comfortably without pills, give it up as body has tremendous capacity to revert to normalcy. Do keep yourself bit physically active and get the sleep study test and discuss with your doctor. Now that you are doing better, do follow the healthy sleep tips as discussed above and update on your progress. Take care.
I also have been having tremers right when im about to fall asleep.I'll wake up and my WHOLE body will be shaking for about 10 sec. but it doesnt hurt......Its kind of freaking me out!! also this does not relate to tremers....Sometimes I wake up screaming when I dont even dream.I was wondering if there might be a connection.I do have depression and im bi polar and I have severe ocd and anxiety and im on alot of med.But i've been on all these meds for about 9 mounths and these tremers just started 2 mounths ago.So I dont know if the meds might be to blame.Any info would be helpful thanks
I was so glad to read your detailed description of the night tremors because this has been going on for about a month and a half for me and continues to get progressively worse. Your description is IDENTICAL to what I have experienced. I was recently diagnosed with Celiac's Disease which is a gluten intolerance so I wondered if this could be diet related. I am 41 and otherwise have always been healthy. I am not overweight, I have a very healthy diet and I exercise. I am going to the Dr. tomorrow and plan to take your description with me because I could not have said it better myself. I feel like I am going to come unglued if I can't get an answer and a good night's rest. Please keep me posted on your test results and tests which your physician recommends. I am desperate for some answers and hopefully a solution. Thanks for your posting. My husband found it and it brought a lot perspective. I am sorry for your situation but am glad you shared this so I would not feel like the only one to ever have had this. I have not been able to find out a whole lot about this which leaves me even more anxious about the situation. Any ideas would be most appreciated. dwc589
Hi Bobito, hope you are feeling better now? Hi, Crystal_blue_girl, how are you doing? Can you provide some more details regarding the jerks you are going through - how often they occur and is it a continuous one or keeps repeating in an on and off pattern? Has any one observed whether these jerks you mention does continue even after you fall asleep? Is there anything that you do or it stops on its own? Usually, hypnic - sleep jerks or twitches are normal and can occur while you tend to fall asleep or when you try to wake up from sleep. You might also probably be suffering from severe stress and anxiety, which can also be a trigger factor. Also you might probably be having Rhythmic movement disorder. These can also be due to the side effect of the medicines you take. Avoid smoking, excessive coffee/tea and alcohol. So, it is better to consult a neurologist and sleep specialist for further evaluation. Take care and update on your progress.
I just sent you a comment or two, but come to find out, the message did not take. I will try again. At the risk of being fatherly, I beg you not to come "unglued." As I mentioned on my previous editorials, I have been experiencing this problem, off and on, for about two years. I used to become unglued. I used to stare at the ceiling for hours, "listening" to my wife and my dogs, yes my dogs, sleeping so deeply and I felt benignly jealous. I used to jump out of bed with a tremendous urge to scream: "NOT FAIR!" This did not help much. In fact, it did not help at all. It made matters much worse. What I realized at one point was that the tremors themselves were only part of the equation to keep me awake. The other part of the equation was the anxiety that was generated when the tremors appeared. What has helped me tremendously is to think of nice, colorful events (I know it sounds corny) while I'm waiting to fall sleep. When the tremors arrive, I simply try (I know it is very hard to do) to not panic. By not panicking, fifty per cent of my problem is resolved. I have found out that the tremors cannot intimidate me as much as they used to. They are not really that "good" at keeping me awake without the assistance of the anxiety they create. Anxiety gone, tremors are much, much weaker! Besides this acceptance (not coming unglued), I have started to implement other practices to help me sleep without any medication. I take a hot shower before going to bed, eat dinner at least three hours before going to bed. Go to bed between 0930 and 1000. This helps me in the following manner: If I have been awake for three hours after going to bed, and I went to bed at 0930, I know I still have enough night hours left to get some sleep. This reduces my anxiety level tremendously while I'm awake. On the other hand, if I go to sleep at, say, midnight, and I don't fall sleep for three hours, there are not too many night hours left; thus, increasing my anxiety exponentially. So I you can see, I have become a true believer that the self-induced anxiety is, to a great extent, as much of a culprit as my tremors. I mentioned medication before. I'd like to address it again. If I have not slept decently for two days or so, I do take a sleeping pill. The anxiety created by that much lack of sleep cannot be overridden by pleasant thoughts. I need to force my self to sleep--The pill does the trick. Once I recapture my natural sleep patterns, I put the pills away and tried what I explained above. So far it has worked for me nicely. I have a sleep study scheduled in forty-five days. I guess there are a lot of people in need in this department--I could not schedule it any earlier. In the interim, my doctor, in conjunction with the resident neurologist gave me a battery of in-office test to determine whether I needed further neurological evaluation, i.e., brain scan or whatever. They determined that there is nothing wrong with me neurologically. This does not rule out further neurological evaluation. All it means is that I can "afford" to wait for the results of the sleep study before taking any further steps in the neurological arena. Is your sleep study taking place before mine? I have faith that if we all keep up with informing each other on our conditions and improvements, we will all conquer this malady. It is not the end of the world (here I go being fatherly again). Allow me to share with you what my son said to me yesterday (he is a radiologist): "Dad, we all bear a cross, FORTUNATELY yours is made of balsa wood when compared to the "things" I see everyday in my practice." Whether he said this because he is sick and tired of hearing my sleeping complains or because he wants to make a philosophical point, is irrelevant. The fact is that it made me realize that our problem is not "terminal." There is lots of potential help out there which will become more readily available as soon as this studies and evaluation shed more light on it. Hope you feel better after seeing your doctor and knowing that your sleep study has been scheduled--In short HELP IN ON ITS WAY. I will definitely share with you the results of my study. Let's hope all of us experiencing this malady keep on talking to each other. This most definitely has a soothing affect--Every little bit helps. Bobito
Hi,Suri Okay so you asked how often do they occur-They are on and of so in other words it doesnt happen everytime im asleep.Maybe like every other night.And like I said before it lasts like 10 sec. with no pause in between.You asked has anyone seen me have these in my sleep the answer is no cuz I sleep alone but I did wake my cat up once when I woke up with rapid movement in my arms they went all the way up and all the way down like three times and stoped which is a first and not one of my "normal" tremers. And they do stop on there own.Its strange its like when its happening I cant concentrate on anything so I cant even will it to stop.I read what you said about stress and anxiety and how that might be a factor but Ive had that from a verrrry early age so why would these things be happening now....Still confussed-Crystal
Thank you so much for all of the information which you shared regarding the tremors. It has meant more than you know to find another person out there that can relate to this unnerving issue. YOU are a good person for sharing this! It has given me the hope I need at this time. I am exhausted as I write this as my nights get worse each night it seems. I had high hopes that I was going to have all kinds of good news to report to you because I made a trip to Whole Foods and bought all of these products that I was sure were going to impact this condition but to no avail... I have a sleep study scheduled for Tues. Night and an appointment with an integrative health Dr. on Thurs. Have you ever thought that this could be a brain tumor? I feel preasure in my head but can't decide if it is just because my rhythms are so off right now and I am so tired. I am an otherwise upbeat positive person and I certainly do not want this to take away my joy for life and living. I will say that my perspective becomes so destorted with little or no sleep. I have been doing some research on different nutrients and the effect on our bodies if we are deficient in them. There are definitely some links but I have yet to figure this one out.
I will keep you posted as all of this unfolds. Hopefully good news is waiting around the corner. Best Wishes and THANK YOU! dwc589
Hi, Crystal_blue_girl, thanks for your reply and how are you? I suggest you need to get examined and investigated properly by a neurologist as your body jerks still continuing. Although it is strange, there might be possible rythmic movements causing you the jerks. It would be better if any of your family members can observe you for the jerks in sleep. There can also be sleep deprivation and stress might worsen this further. Relax and try to go to sleep as early as possible. You can also get a sleep study done. Take care and share your thoughts.
Hi, dwc--I'd like to share the following opinions with you in reference to some of the points you have made. First of all, I doubt very much, in my own humble opinion, that a brain tumor could be the culprit in our situation. I think other body faculties would be affected as well, besides causing the tremors if a tumor was "involved." When I don't sleep I get head discomforts, which I most definitely attribute to the lack of sleep. I have learned in the last two years that lack of sleep can disturb the natural "rhythm" of my body as well as my mind to the point that I cannot reason things out as accurately as should be expected from a "normal" person. This is all transitory--It all comes back as soon as I get some rest. The following are my thoughts of what can possibly be causing our problem. I have drawn these conclusions after gathering as much empirical data as possible. This data comes from medical consultations, reading and simple gut feelings. Thought #1: Our problem can be caused by diet. I just have this strong feeling that we are eating something that our brain simply does not appreciate. In response to this I have started a journal of everything I eat every day. Hopefully, when I get bad tremors I can go back to my journal and maybe, just maybe, there is a correlation between the two. Thought #2: Allergies--I am starting to realize that the worst of my problems manifest themselves during the spring time and early fall. I am not taking any medication for allergies, for I have learned that those medications, among other things, can cause tremors and insomnia--something, for obvious reasons, I want to stay as far away as possible. If my upcoming sleep study will fail to reveal any obvious conditions, I will talk to an allergist. Thought #3: Exertion. As I have mentioned in my previous editorials, I ride my bicycle to work everyday (twenty miles round trip). And many a time, I go riding with my buddies during the weekend--Sometimes for up to 100 miles in one weekend. I'm sixty years and I think by body is asking me to slow down. Well, I'm going to listen to my body--As of yesterday, I going to cut back my exercise routine by half. This decision could not have come at a worse time, considering the price of fuel. I'm going to ride my bike to work only three times a week. I'll see how my body reacts to this. Thought #4: Plain anxiety. I did mention this before, but I would like to readdress it. The tremors wake us up, but I really believe that what keeps us awake is the anxiety we experience as a result of the tremors. What has helped me tremendously is going to bed with the mindset that I’m going to be awakened by the tremors. When the tremors “arrive,” I was expecting them. In other words, they are not as much of a surprise any longer. Again, this has helped me a great deal since it has reduced the amount of anxiety that is caused by the “unexpected’ tremors. I’m pretty sure your sleep study will reveal a great deal. I only wish mine was scheduled on Tuesday, as well. Mine is not going to take place for another 40 days or so. Thought #5. I think we could be experiencing some type of epileptic seizure, which only manifest itself when the brain is the sleeping mode. The sleep study will clear this one up. Just think how colorful things will be once your sleep study is conducted, and the answers start to pour in. Just a few more days--hang in there, my friend—Good luck—Please keep in touch. Bobito.
Thank you so much for all of your thoughts on this. You definitely have a way of putting things into perspective for me as I am loosing my perspective with the lack of sleep. This weekend I tried an Ambion tablet for the first time ever...(I am very anti-drug as I can see you are also) It was not the control release just the regular. My husband had them from work for international flights. I went to bed at 8:30 because I was so exhausted and I awakened from my drug induced sleep at 12:45 a.m. I then could not go back to sleep until 6:00 a.m and slept until 8:50... I think I am so afraid of having the tremors that my body has decided not to sleep at all... Yesterday my husband and children were starting a garden and I decided to read in the hammock thinking how relaxing would that be to be surrounded by your family happily at work and the birds chirping etc...I was able to rest but never could go to sleep. I have been awake for most of the night F,S,and S. This morning my mom found an interesting report on www.adrenalfatigue.org/sleep_disorders.php which could be enlightening. it souns like cortisol levels could be to blame. Do you feel a little hungrey when you awaken with the tremors? I am feeling hungry for the first time ever in the night. Do you ever feel like you have an electric generater in your upper body as you try to go back to sleep? The interesting link in this equation is that I usually feel peaceful when I go to bed but my body is way more agitated when I awaken which makes me think this could be blood sugar related. Try to pull up that article and see what you think about some of the points made. If you can't get it via the link I sent then try www.adrenalfatigue.org and then type in "sleep disorders." Maybe we're onto something yet. Your levels of bike riding I would think would be a very healthy thing for you but maybe because you exert so much in the day you need to supply your body with a healthy protein, high quality fat and unrefined carbs as a small bedtime snack to see your body through the night. It is in the article. Hopefully we can have victory over these crazy tremors sooner than later. Have a happy day! dwc589
Hi, dwc--How are you? Did you have your sleep study last night? I read your last post with great enthusiasm. Yes, I do experience some hunger, but not when the tremors wake me up, but just before I go to bed. Based on your recommendation, I'm going to eat a little something prior to bed. Who knows, just as you said, maybe we are onto something here. Yes, I do feel like a miniature electric generator (very lucidly described) sits on my chest after I'm awakened. This "generator" stays on for about 10-15 seconds, then it shuts off completely. This happens every time the tremors wake me up. At any rate, thank you very much for recommending the article. In fact, I might buy the book that the article is extracted from. I'll keep you advised on this one. Hope things are better with you--Keep in touch--Don't forget to share with us the latest on your sleep study. I'm pretty sure a number of us are extremely interested to hear about it. By the by, when I need to take a sleeping pill, I take "Restoril"--This one has the least number of negative side affects of all the pills I have been prescribed. I read about it on the Web and found out that the U.S. Air Force prescribes this one to its pilots when they are afflicted by disturbances in their circadian rhythm. I figure it must be pretty safe if the Air Force allows the pilots to use it--I hope! Have a happy day. Remember to be happier everyday that goes by, for it means we are that one day closer to the day we are cured of this malady. Bobito
I'm not sure what happened to my earlier posting as I wrote quite a bit earlier today and it has now vanished... as I said earlier so sorry for the delay in my response to you. My week was quite trying. On the night of my scheduled sleep study my husband had to take our 11 year old daughter to the ER with chest pains. I had taken her to the doctor the previous week and we thought it was reflux causing her heart to burn but on Tues she had the pain in PE which was concerning. She is 40th percentile in her weight and very active so again no outward signs of problems. Right before I went was asked to turn off my phone for the study to begin I found out that there was something showing up on her tests and that they would have to stay for further testing... That has all turned out fine we think now but can you imagine sleeping under those circumstances? Especially since I was coming off my weekend of insomnia. So the study was a bit of a disaster. I slept for 45 min. the first half of the night and 30 minutes the second half of the night. I have not yet gotten the results but wonder what will be concluded on almost no sleep. Now I am taking Lorazapam which is an anti anxiety med. hopefully just for a week or so to get me back into a relax mode as I truly can not function on so little sleep. It has helped to relax me but I am beginning to feel the tremors again. I will meet with my integrative health doctor for the evaluation of my screening on Thurs. and I still would like to have a MRI to make sure all is well with my brain. I just can not imagine what is causing this. I will keep you up to date with my sleep study and other results as I receive them. I can't tell you how much I have appreciated all of your thoughts and encouragement through this. I look so forward to your sleep study to hopefully learn something for both of us. So sorry to let us down on that one! Keep me posted on any new findings! Have a good night! dwc589
No, I cannot imagine being able to sleep under the conditions you have shared with me (your daughter's condition)--Even a human being with perfect sleeping patters could not have possibly slept under those conditions. I take my hat off to you for the tremendous resilience and character you have demonstrated in bearing such an incredibly heavy "load" and still manage to move forward. But as you can see, your daughter is going to be fine and you, in turn, will also be just fine once your study is analyzed. Obviously, I am not in any shape or form an authority in sleep studies, but based on some readings I have done, there is no need for a long period of sleep in order to interpret one's condition during a sleep study--I can only guess that the fact that you managed to sleep for some period, it is enough for the electronic equipment (all the probes attached to you) to detect any anomalies in your sleep/awake modes. You seem somewhat preoccupied with the existence of a brain tumor--for whatever is worth to you, I really don't think so. I have gone that route as well. I sincerely believe that when we are deprived of as much sleep as we have, we have a tendency to mentally wonder into tangents that are simply self-created because we are angry--Yes, angry! Besides anxiety, we also feel anger at the fact that the rest of the world is "fine" and we are the only ones afflicted with a malady. That's how we see the world around us--Everyone is just fine--Why are we the "only" ones with a problem? Well, I must admit, nature is heartless but it (nature) has not set its cross hairs on just us. Nature has its "guns" trained on everybody; it so happens that most people don't want to talk about how their lives really are or they simply are not lucky enough to find other people who endure the same system "malfunctions" so they talk to each other and find some solace in sharing. We have found that solace and therefore we are better off than a lot of people in this world. I took your advice and follow some of the steps in the article you recommended I read. I have eaten a spoonful of peanut butter just before I go to bed. Honestly, it has helped me. It could be just coincidence (or the placebo affect kicking in), but I have been able to sleep about five hours a night for the last four days. Could all this be purely psychological?--It could be, but I am going to continue eating my peanut butter until it ceases to be effective. The tremors are mild, but I have still managed to sleep. My only regret is knowing that I have yet to reciprocate this advise by helping you in some way. I also have lost some of my postings. I wonder where they go after you hit the "Post Comment" button. I guess the same place where white goes when snow melts. In order to remedy this situation, I have started to type my comments on a WORD document and then copy it into this site. It has worked nicely--I have yet to lose another one. Looking forward to hearing from you. Warm regards, Bobito
Hi, dwc--How are you? Has your sleep study been "decipher?" I' m feeling a bit better. Still some shaken by the tremors, but I have gotten a little better at tolerating them. Let us know how you are coming along. Bobito
Hi, dwc--very nice hearing from you. I was getting a bit concerned about your status. Well, let me start with my sleep study. It was supposed to take place next week, but that clinic discovered that I had been scheduled for a sleep study without an “interview” with a sleep specialist. Thus, they gave an immediate appointment with the sleep specialist. He reviewed my records and listened to my situation and determined that my problem was not a sleep problem. He figured that if I’m able to fall sleep, which I am, and the tremors wake me up, which they do, it is a tremor problem that is causing my sleep problems. It is not a sleep problem. He feels that it is a heart problem of some sort that is causing the tremors. I explained to him that I have had multiple cardiograms and 24-hour halters and they have revealed nothing but a very healthy heart. He added that what I needed to have was what is called an “event monitor” to be carried for two weeks. He said this is the only way to “smoke” out heart irregularities that escape the cardiograms and the 24-hour halters. And that’s where my situation stands as of right now. On Monday I’m going to the clinic to be fitted with one of those apparatus. As far as my children are concerned, actually I have two and both are doctors. One is a radiologist and the other one is a dermatologist. To be honest with you, they don’t help that much. The radiologist is extremely stoic and, consequently, very indifferent to compassion and kind advise. The dermatologist, on the other hand, is very compassionate and goes out of his way to make me feel better with his “opinions”. Bottom line: All they really have is OPINIONS—In fact, my wife feels that they simply don’t know and, therefore, I should not ask them about it anymore—All that means, she added, is more opinions for me to have to psychologically and emotionally deal with. One thing the dermatologist did about six months ago was to have a friend of his (a sleep specialist) called me and asked me about my situation. His OPINION: To have a sleep study administered. I have decided to follow my wife’s advice. At any rate, I have been able to sleep a little better—The tremors still there, but not as intense. I have gone through this phase before—They may increase in intensity anytime. I’m going for the event monitor—Who knows, it might reveal something of substance. Needless to say, I feel pretty bad about your daughter—Neither you nor your daughter deserve this. I’m pretty sure things will get better for all of us. You mentioned about hormones—Yes, that’s all been checked. Everything is fine in that department. Thank your for bringing it up. I will keep you advised if anything of substance develops—Most definitely, I will share with you the results of the event monitor. Your friend, Bobito.
Hi bobito, how are you doing? Hope you might be feeling better these days? Are you getting good sleep now or still you do have the jerks at night? Chronic fatigue and night muscle cramps can worsen it. Do keep physically active and physical therapy might be helpful. Also a gentle massage would soothe the aching muscles and give comfort to you. Hope to hear from you. Take care and share your thoughts.
Again sorry for the delay. Life just keeps happening at a fast pace whether I sleep or not!! Here is my latest and I'll be looking forward to hearing yours. Well, first of all I must say that I was so sad and discouraged by your news of no sleep study. I did not realize how much hope I had put in you having that study. However, I was inspired by the idea of seeing a cardiologist. So since we have talked believe it or not, I have had hormone testing, a nuclear stress test, a 24 hour heart monitor, a ct scan of my abdomen and brain, and an echogram of my heart... I will get results of all of this on Tues. I will let you know what I find out. This Doc. was also very interested that my tremors only occur after 3:30 am. Is this the case for yours or are they happening all night? He is wondering about Hypoglycemia thinking that maybe my blood sugur hits a low at that time. He seems intrigued with the case so pray he can come up with some answers. Hope your week has gone well and that your spring has been as pretty and rejuvenating as ours has been. I look forward to hearing from you! Your friend, dwc589
Hi again Bobito :),
I meant to tell you that my daughter has been wearing the event monitor for two weeks and has to wear it until Thursday. She can harldy wait to remove it although it has not been that bad. I think her issue is more of a GI issue since she hasn't been quite right since she had a stomach virus about six weeks ago. She did have a racing heart the one night but also a lot of heart burn. She is about to start swim team practice so I'm wondering how this will agree with her. She is a much better ballerina than a swimmer so I am anticipating great amounts of intake of chlorinated water as she ramps up. I am still taking the Ativan to sleep and am consistantly having the tremors after 3:30am as I mentioned earlier. The Ativan has been an excellent choice to help me sleep well and not freak out when the tremors occur. Also it does not make you sleepy at all the next day. I would like to only take this for a while longer on a nightly basis but as far as a sleep aid with none of the drugged sleep feeling it has been good. Keep in mind it is an anti-anxioty med not a true sleep aid but it really does work. My goal is to use it only now and then like I used to take a tylenol pm now and then. I look forward to hearing how the event monitor is working out for you. Keep me posted on your progress! Hope this finds you doing really well!
If you are like me you are relieved that you are at least doing something (by wearing the heart monitor) that could lead to a solution to this disruption in your otherwise enjoyable life. Have a happy day and find time to stop and smell the flowers! dwc589
Now I'm getting a little concerned about you! Hope all is going well for you as you wear the event monitor. I am anxious to know how that goes. My latest is this...I had no issues with my heart, hormones, or abdomen. He did not test my brain which I thought he had. He did detect irregularities in my heart while resting (this showed up with the 24 hour heart moniter) and my levels of epinephrin (not sure how to spell this) were high. So he is trying a Beta Blocker with me. In the literature from the Mayo Clinic it states that this can help with some tremors. I am also taking 400mg of Magnesium at night before bed. I started this on May 20th so it is too soon to tell if it is working. With the event monitor do you have to press the button when you have a tremor? It seems like that would wake you up for sure. Keep my posted! Hope your day is a nice one! dwc589
Hi, dwc--I'm sorry I have not been too responsive lately--My wife and I decided to take a few days off. Let me start by telling you that I went through the whole heart event process (seven days)--I returned the monitor the day before I went on vacation and I am going to make an appointment with the cardiologist tomorrow to discuss the results. The monitor was a rather painless procedure--I had to call the clinic after every five events, they were "downloaded" telephonically, the monitor was then zeroed out. I called again after another five events. Pretty neat little devise, I thought. Every time I had a "waking up" tremor, I simply pressed a button and it recorded my heart activity for about a minute or so. As I mentioned above, after every five of them I called them in. By the by, I slept very nicely on my vacation time. I truly believe that the reason I managed to sleep so well, even with the tremors, is because I did not have to stress about having to get up at any giving time. The morale of the story: "Retirement"! It is interesting that your doctor prescribed Beta Blockers for you. This medicine helped me sister tremendously with her problem with "stage fright." She had to give public presentations routinely--Her stage fright level became so pronounced that she had to seek medical attention. It will be very interesting to find out what the event monitor revealed. I will definitely keep you advised as these developments unfold. It seems that you have been getting some good sleep--What a great thing--Believe me, we are now on our way to "recovery." Little by little we'll beat this malady. I always feel that lack of sleep is equivalent to lack of food. You simply cannot function without them. It was very nice hearing from you and your good news. Hopefully, I will have good news for you in a few days. Have a very pleasant week, your friend, bobito.
Hi, dwc--I sent you a note yesterday, but I forgot to answer one of your questions; which in my view is crucial. You asked me whether I wake up around 3:00 AM. My answer is most definitely YES. Every single morning, whether I have taken a sleeping pill or naturally sleeping, I wake up at that time. I stayed up for an hour or so and fall back to sleep, normally. Is this signifincant? I see you have falling into the same pattern. In revewing your research, are there any commonalities which might be of help? Hope to hear from you--Your friend, bobito
Hi bobito, Hope you are feeling better now? Are your tremors under control now and letting you to have a normal sleep? Have you checked your blood sugar and blood pressure? Even an EMG study would be helpful. Taking too many medicines also is not advisable, so seek medical advise by a neurologist. Try to go for a morning-evening walk or regular stretches and body massages occasionally. Take warm shower and sleep early. Listening to your favorite music or reading book in a comforting room can put you to sleep. Do update on your progress and any visit to doctor. Take care.
It was so good to hear from you! I am anxious to hear what the cardiologist has to say. I still do not have a glowing report to share with you although things are somewhat improving. I am sleeping MUCH better and had one night completely free of tremors. One night, however, I was able to sleep in a little bit and the tremors had not occured in the night but between 6:15 and 7:15 I was dozing and had my worst tremors on record...These extended throughout my entire body including my legs and brain. I must say this really saddened me after I was feeling like I was on the mend. The last three nights have been pretty good although tremors on a much milder scale have been taking place each night. It seems that they are occuring later in the night like closer to 5:00. I have only been on the Toprol for a week and six days so I think it is too soon to tell if this is the answer. There is no doubt that in most cases I am better off on the med for now. Tomorrow I am also having a CT scan of my brain. I will keep you filled in as I have new news. Have a great day! dwc589
It is great hearing from you, dwc.--I'm feeling somewhat demoralized about my event monitor results. The clinic called me yesterday and told me that something mechanically had gone wrong with the equipment and that I had to do it all over again. Apparently, when the cardiologist went to "read" the results, he found nothing but blank returns. I don't know exactly how the system works, but I'm inclined to believe that it was operator's error (me). I must have done something wrong for it to not register much of anything. I will go back to the clinic on Friday to be fitted again for seven days. I'll most definitely keep you posted. Well, just like you, I had been sleeping very nicely until last night. The tremors were not that strong, but for some reason I just could not go back to sleep after they manifested themselves (3:00 AM). I had been able to sleep somewhat in the past after the tremors. And just as you said, I was feeling pretty confident that the tremor were simply going away--No such luck--They are back. Not any stronger, I must admit, but they are most definitely back. The only positive aspect of this whole new cycle is that I have been down that path before so, psychologically, it is a bit easier to tolerate it. I have been keeping a journal of every daily activity, to include amount of exercise, types and amounts of food, and any other routine worthwhile documenting. So far, I cannot find any correlation between the tremors and my daily activities. At any rate, we are getting "there" little by little. I'm pretty confident that we will able to "smoke out" the culprit of this dysfunction in the very near future. I'll honest with you, I don't care how serious this turns out be. I just want answers and, consequently, the proper treatment. How is your daughter doing? Again, it was very nice hearing from you. You said that you had nothing positive to report--It does not matter. The fact that you are still seeking and fighting is in itself great news. Your fried, bobito.
Hi, dwc, long time no hear--Hope things are well with you. How did your CT scan turn out? I'm pretty sure everything is fine in that "department." As I mentioned on my previous posting, my first heart event monitor was inconclusive. I just finished my second one--The cardiologist will take a look at it in the near future and will call me to arrange for a visit to discuss the rusults. I'll keep you posted. I would love to hear from you. Have a beautiful day--bobito
Hi, dwc--How are you? I'm still waiting for the results of my event monitor. My doctor (cardiologist) has been on some kind of medical fellowship and won't be back until the 22nd of this month--I was given an appointment to see him on the 23rd. I'm a bit concerned about you--I have not heard from you since you had your scan. How did that go? Do you think (if the event monitor does not reveal anything of substance) that I should request to be administered a brain scan? Please, I need your help on this one. My sleeping patterns are just going all over the map--I have not gotten much sleep lately. Hope to hear from you. Have a great day. Bobito
Again so sorry for the delay. My children are out of school and home for the summer which is wonderful and very fun but super busy! It is almost like we need to exchange phone numbers as I do way better picking up the phone than writing it all out. I was so sad to hear that you are not doing as well. Hopefully I may have some answers for you. I was actually waiting to have all results back before I wrote back. I went to the Dr. today and the brain scan is perfectly normal!!! So no worries there. Today was also the follow up on how I was doing on the Toprol. I have been on the Toprol (Beta blocker) for almost one month now and this is really helping. The tremors are not completely gone but they are mild like a fan running instead of a jack hammer or generator. If I take the Toprol with the Ativan I have no side effects and NO tremors!!!! The toprol will hopefully smoke out the tremors entirely eventually but for now the Ativan has been a life saver for good rest with no side effects. The Ativan can even be taken in the middle of the night if needed if you are having trouble falling back to sleep and you will wake up feeling fine in the am. My nurse practitioner friend said that the reason she likes it so much is it does relax your body to sleep but you do not feel groggy like you have had a sleep aid. I keep trying to not use it every night but my doctor said it is fine for the short term and eventully I will not need it. He said that it is far more impt. to refresh your body with a good night's rest. The other piece of info is that my Doc said that the man that created Toprol won the Nobel prize. He said this is an excellent drug with very limited side effects and exactly what I need to be taking. I am only taking 25 mg which is the smallest dose. If I continue to have tremors he will up that dose a bit. I really respect this doc and feel this may be your answer.... My doc is an internest and cardiologist that also specializes in sleep disorders. Hopefully this will give you something to go from. Today when I questioned still having some tremors there was absolutely no doubt in his mind that I am on the right med just do I need to take a little higher dose. We chose to stay with the 25 mg for now hoping that will work out fine. Thank you for asking about my daughter. She had an endoscopy a week ago and they did find an ulcer. Basically she had a stomach virus a couple of months ago and her stomach was never right after that. We went on a cruise right before the virus and she even tried escargo! The Heart issue was mainly just heart burn. She is on Prevacid for 3 months. Hopefully, my info will help in your search for answers. I know that I am feeling improvement. He also said that I must stay extremely active. I've been thinking of adding yoga to my routine as well. Keep me posted! Hope some of this helps. Your friend, dwc589
One more thing and then I am off to go to a swim meet. My doc also has me taking 400mg of magnesium before bed and today he said that I should take 1000 mcg of Vit. B12. I will take this in the am. Hope this helps! Dana ~ aka dwc589
Hi, dwc--At the risk of sounding maudlin, I must tell you it was just great hearing from you--I was starting to get worried. I am so happy that your brain and other faculties are functioning perfectly. I had my appointment with my doctor to discuss my event monitor results. You guessed it! My heart is perfectly normal. He simply stated that there is absolutely no relationship between the tremors and my heart. What does that mean?, I asked. Well, very simply stated: "Back to square one." I asked him about "Beta-Blockers". His answer was no! The reason he gave me is that this med will drop my blood pressure. This is not advisable since my B.P. is already very low. As I mentioned to you before, I found out that my sister takes Beta-Blockers for her stage fright problems. She tells me that her blood pressure has dropped substantially. My doctor is absolutely correct on this one. If I take a medicine that drops my blood pressure substantially, I would be in a rather serious health situation. I told him about my problem with side affects from the sleeping pills and that being the major reason I much rather not sleep than take a medicine that makes me feel as if I had just come out of three-day drunk. He prescribed a different type of sleeping pill--Lunesta. I have not tried it yet, so I'm not familiar with its efficacy or with its side affects. You mentioned that you have been diagnosed as having hypoglycemia. I wonder, when you can find some free time in the future, to elaborate on that, to include what has been helping you in that department. I honestly think that I might be afflicted with this condition. Sometimes I get very shaky, very hungry, sweaty, anxious, etc. If I eat something sweet, it seems to alleviate my problem. I was reading about the fact that hypoglycemia can also cause tremors. As I mentioned previously, all my blood/urine work has shown absolutely no irregularities--And believe me, they have taken plenty of blood from me since I started to complain about the tremors. At any rate, I have been sleeping pretty well for the last few days--The tremors are there, all right, they are not as strong. I hate to sound pessimistic, but I know it is a matter of time before they start shaking me like a pair of maracas--After three years, I know what to expect. I'm going on a family SCUBA vacation for ten days. My two sons, their respective wives and my wife decided to live a little! Again, it was wonderful hearing from you again. We should be happy--we have something to look forward to--A cure. Think of how many people don't have anything to look forward in their lives. Have a wonderful, beautiful day. As always, I will let you if anything develops. Your friend, bobito
Dear bobito and dwc589, your message exchange was really fascinating reading for me. I hope you are both feeling better. By the way, YABob means Yet Another Bob.
I started having night tremors a few weeks ago. You both described my situation very well. I am 52 and generally in good health. After about a week of this, I saw my primary care physician. I told him about several things in my life that may be related to it: 1. I've recently moved into a new office building at work. We're on the top floor under the air conditioners and you can feel everything vibrating. E.g., a full cup of water has wavelets. 2. I've almost certainly got Gastro Esophogeal Reflux Disease (GERD) which can cause esophogeal spasms. I'm taking prilosec for that and have cut out most of my favorite foods and drinks (coffee, red wine, tomatoes, ...). 3. I have tinnitus (ringing in the ears, a feeling of clogged up ears) and last but not least, 4. I am under a great deal of stress, I have a 14 year old son who is disabled and I just sent him off to sleep-away camp, it is his first time away from us.
So that is my background, my doctor told me that he thought my problem was the combination of stress and the vibrating office building. He told me that he has other patients who work in vibrating environments who continue to feel vibrations at home. Well, no doubt I'm stressed but I haven't been going to the office much these last two weeks and I still get this while I'm falling asleep and sometimes it wakes my up at around 3 or 4AM (as it just did).
I took 2.5mg of valium two nights ago. It helped me fall asleep but I was still awakened by tremors and I felt groggy all day yesterday. Last night I took 1.25mg of valium. I woke up at 4AM with tremors again (and googled my way to your exchange).
So I think I might want to ask my doctor to refer me to a sleep specialist.
Anyway, thank you for the very helpful information.
Bobito and DWC589,
Thanks so much for posting your experiences. Please don't stop. I just found your posts and I've been suffering since June 1. I went to bed fine and woke up feeling like my blood sugar was low. I was shaking internally, a really fine tremor in my arms, legs and head. I woke up and had some orange juice but it didn't help. Since then, I've only had 3 nights of uninterrupted sleep. The tremors are strongest in the back of my head. I feel them as I am falling to sleep and as I am about to awake. The muscles in my calves are also tight. My blood work shows a slightly overactive thyroid, and an ultrasound shows that the thyroid has several colloidal nodules on it. A neurologist says that my neck and shoulder muscles feel like "wood," so I started physical therapy after a brain MRI came back normal. I still need to have an EEG. I have missed a menstrual period, but I am not pregnant. Another message board referenced menopause as a possibility (hormonal changes). An endocrinologist gave me a beta blocker, but a cardiologist told me to stop taking it because my blood pressure is already low. On Tuesday I will wear a 24-hr heart monitor and have an ultrasound of my heart. No doubt this is in some way all caused by stress. I have recently gone through a very stressful period in my life. All I want now is to get back to normal. I bought some magnesium, but I have trouble swallowing the tablets, and I felt nauseated after taking 250 mg. Please keep sharing.
I am going through a tough time with internal tremors as I begin to doze off, and panic/fear/sadness in the pitt of my stomach at the same time.. It's a sad feeling as well as scary.
I went to the doctors, and she did extensive blood work, an ekg and an echocardiogram... All of which were normal.
I was glad about that, of course, but I keep feeling lousy and I can't help but wonder what could be wrong with me. My brain doesn't stop thinking of this - it's so strange.
I guess I need to see about seeing a neurologist next. I feel that my primary care just kind of brushed it off as Anxiety, which it very well may be, but I tend to think that they're missing something.
I'm new here, I just had to post on this thread because it's good to hear from people who are dealing with this weird stuff.
For the record, I am 42 years old and about 125 pounds, my blood pressure fluctuates, but it's still within normal range....
I'm at a loss because I've always had GREAT blood pressure readings - oh, and about 10 years ago, I learned that I have a small AVM in the right temporal lobe of my brain - which the doc at that time said was something I was born with, and should not be causing my myoclonic twitches ( which I got suddenly all those years ago, and was the reason for my visit. )
Pleased to meet you all....... I enjoyed reading your posts..
Nice to meet you cspoon,
Maybe if we all post our findings with the various doctors that we see, we can find some commonalities that will help us find better health, rest, and peace of mind. I will continue to post here in the hope that we can all help and support each other.
Dear all. I hope you are all doing better. I started paying very close attention to my symptoms and realized that the tremor seemed to coincide with blood flow. This made me think of my heart and after a little poking around, I found a condition called sinus tachycardia. The symptoms fit mine to a T -except- I don't see anything about sinus tachycardia that suggests that it occurs in a somnolent state.
Anyway, I am going to check this out and I thought I'd bring it to your attention just in case it might be helpful.
I'm not sure if this is related or not, but I get something where I feel like my body is vibrating. I'm 25 and normal weight for my height. With me I think it's a type of sleep paralysis, because I am unable to move during an event and it's definitely all internal. I notice that I'll get more ringing in my ears with a sound like I am yawning with my mouth closed.
I find it odd because I don't often find Sleep paralysis described like this. Usually it's described something similar but with intense fear... I used to get the fear, but seem to have lost it over time... I get more annoyed than anything, because it doesn't go away if I try to sleep through it. So far what I have found to work is to wake up completely. I mean actually sit up, go to the bathroom, or something. Stay awake for about 5-30 minutes and go back to sleep. Otherwise if I just lay down with my eyes open, then I'll jump right back into the REM sleep fully awake...
Another atypical thing I've observed with myself is that I seem to get it at a different level- deeper into the REM, because I may switch back and forth between being fully awake w/vibrations and unable to move to having a lucid dream in a dream setting... It's like being transported between my bedroom and the dream setting... Odd... I guess there's a lot more to sleep paralysis than the experts are aware of?
That being said I don't always find it bad. One time I had an interesting dream with one of the characters I write about in one of my stories.
I think part of being an artist/writer makes me more prone to strange dream experiances. Some of them are quite interesting... I think I've had sleep paralysis at just about all levels of REM...but I don't know... I just remember being in a dream I was having SP in my dream... O_o Oh well at least the vibrant sunset in the dream made it worth it...
Hi Bobito and all,
So sorry to hear about all of the strange events in each of your sleep patterns. Bobito and I both know how unsettling this can be and relate to your frustration. Bobito, I spoke with a sleep specialist the other day and he too had never heard of the tremors that we are both experiencing. He recommended that I do another sleep study since the first was inconclusive. I may do this but I must say that the more I learn about this the more I am almost convinced that it is anxiety. I will say that the Ativan does make it so much easier to rest. And wake feeling fully rested. It makes me think that I should try a very low dose of Paxil for a while to see if this helps. I hope you had a great vacation. We just had a wonderful and restful week at the beach. R and R sure doesn't hurt! I look forward to hearing how you did on your trip. My tremors were still very much apart of my nights which disappointed me to say the least. As far as the hypoglycemia goes. "Hypoglycemia for Dummies" had some really good info on this condition. I now am thinking that it is not the issue, however. Let's keep searching and fighting! dwc589
Hi! I've found this discussion to be fascinating. Hope you don't mind my popping in.
I'm another sleep tremor-er. Going back through my blogs, they seem to have started in May of last year, although they've only really started bothering me as of May of this year.
I've had everything from the internal oscillation, to tremors in my right hand waking me up, to what I thought was a full-blown seizure. All 4 limbs plus my jaw were tremoring on that one. Also get electrical shocks through my body at night, one event of sleep paralysis and one event of sleepwalking that I know of. No feeling of fear while any of this has been going on. It's been more of an eerie calm and a fascination as to what my body's doing at the time. Gotta admit tho - the hand tremor waking me up thing is really annoying.
I also have "reverse insomnia" (go to sleep just fine but wake up at obscene hours of the morning), often start dreaming before I'm fully asleep, and very vivid dreams almost every night, often unpleasant and/or violent.
I've done the 24-hour holter monitor study - nothing of note. Also had a stress test, EKGs, CT scans, MRI. Nuthin. Currently scheduled for an EEG on the 24th and will be scheduled for a sleep study soon.
Nyxie, let us know how your EEG goes. I'm supposed to have one, too, but I'm pretty tired of bouncing from doctor to doctor. I'm still waiting for results from tests done three weeks ago. As I've read over the posts looking for a thread that might link our symptoms, stress is the only one that may be a common factor. This makes me wonder if adrenal fatigue might be one of the culprits.
I read online that magnesium can help tremors, but it upsets my stomach. I purchased some magnesium oil--supposedly it can have a relaxing effect (similar, but stronger than epsom salt). I'll let you know if it helps the muscle spasms.
One test result that I received does show a B2 and B12 deficiency. I just started sublingual B12 and B complex. Has anyone else noticed a vitamin/mineral deficiency?
I do have adrenal fatigue, although it's probably more from physical than emotional stressors. I have other health stuff going on and adrenal fatigue is common among those with chronic health issues as well as those undergoing chronic emotional/mental stress. I'm not on hydrocortisone. Instead, I chose to support my adrenals through supplements, particularly B5.
I did have mineral/vitamin deficiencies (iron, vit D, and all the Bs), although those are pretty well taken care of now. I supplement with just about everything, including all the Bs, magnesium, and calcium. I take magnesium malate, which doesn't seem to bother my stomach at all. Let me know how the magnesium oil works for you. Btw, if you're going to supplement with oral magnesium (not sure about the oil), you also need to add in a calcium supplement but take it at a different time of day. I usually do the magnesium at lunch and the calcium at bedtime when it's better absorbed.
Just a note regarding B12. If you have peripheral neuropathy (parasthesias) from your B12 deficiency, they may get worse before they get better. Nobody told me this when I started supplementing with B12. Had about 2 weeks where the tingling got really bad (particularly at night) and then all of a sudden everything was so much better. It took about 4 months of supplementing with 5000mcg before this all happened, so don't get discouraged. You might also want to take a small amount of folate with the B12 as it helps your body use the B12.
Had ANAs done back in March. All negative. Had thyroid antibodies tested. Those were negative as well.
Will let you know how the EEG goes. q606, let us know when you get your test results in too, ok? And let us know how the magnesium's working for you.
And keep questioning. It's the only way we're going to figure this thing out. :)
I'm not sure when you will be returning from your trip but you will see we have many new fellow tremorers!! I feel bad for us all. :( However half the battle is to stay on the possitive side and continue to count the blessings in each day. Here is my latest...For three nights I took the generic Toprol and went right back into my sleepless pattern. I went to the Doc. and now I am back on the reg Toprol and Ativan and I have a 24hr monitor scheduled for next week and a sleep study scheduled for Aug. 29th. A friend said that her mom had almost identical issues for 10 years and it was finally diagnosed as Atrial Fibrillation. My doc seriously doubts that this is the case for me since it was not picked up on all the tests but is still looking. Nyxie63, you mentioned the noctunal sinus tachycardia. I am interested in learning more about this because my Doc definitely believes that this is some form of Tachycardia. Have a great day to all; find simple pleasures and take some deep breaths! dwc589
I have mitral valve prolapse. My cardiologist gave me Toprol, and the pharmacy filled the prescription with a generic, which does not help at all. Inderal, however, is a beta blocker that I took previously (prescribed by an endocrinologist) that worked wonders. I took 20 mg of Inderal and 1/2 of the Toprol 25 mg. At any time did you experience success with Toprol in stopping the tremors?
That is so interesting that the generic Toprol did not work for you either. I feel like I am feeling more like myself again after a week of getting that out of my system. I do think the Toprol is helping. I will not give it full credit, however, until I can be off the ativan entirely. I feel like I am definitely making steps towards improvement.
How did your 24 hr. heart monitor results come back? I am wearing one now. The big question is will I have the tremors while wearing so that the info will show up as an irregularity. Let me know what you learned from yours.
I found a great magnesium. It is at Whole Foods or health food stores. It is made by "Bluebonnet" and it is called "Liquid Calcium Magnesium Citrate." I take one Tbsp first thing in the morning and one Tbsp b/f bed. This is an excellent product that I would highly recommend.
Love the name!!! Just wanted to know how you are doing with the vibrating office. What floor are you on??? Maybe as your body adjusts it will improve. My Doc is feeling like time is a great healer as well. Just wanted to check on you!
I have missed hearing from you! If you have not been checking our blog you will be amazed at all of our new posts. I'm getting a little concerned that I haven't heard from you in a while. I am hoping that no news is great news! A little aside to the friend I was telling you about earlier with the atrial fibrilation...she had OUR symptoms for 10 years before the doc finally figured this out to be the problem. I want to learn more about this experience from her. Hope you are having a great day! Your friend, dwc589
The monitor results were "fine." I reported the times that I had tremors while wearing the monitor, but they don't seem to show up like palpitations (the ultrasound revealed the mitral valve prolapse). According to the cardiologist, there is no leaking and "nothing serious."
However, he did say that many doctors don't educate patients about the autonomic nervous system--specifically how the parasympathetic system is responsible for constrictions within the body and can dominate the dilating functions that tend to relax us (sympathetic system). In some people, certain illnesses can cause the two parts of the system to function out of balance versus in harmony. In my case, he suspects one of three factors: mitral valve prolapse, hyperthyroidism, or perimenopause. I'm awaiting the results of blood work to see which one might be the culprit. He even recognized that I have a Type A personality, which is typical of mitral valve prolapse patients due to the effect of the adrenalin we generate for multi-tasking, organizing, and caring for others. He assured me that I am not a hypochondriac and admitted that, though all doctors learn about these fundamental principles in medical school, they tend to attribute our syptoms (symptoms) to excessive worry, anxiety or depression, when, in fact, the symptoms are often what cause or exacerbate stress, anxiety and depression (going from doctor to doctor, looking for answers, withdrawing from telling loved ones that you don't feel well, etc.). Though my heart is fine, I am thankful for my recent visit to my cardiologist; he says that beta blockers can help and at least gave me some information that gives me peace and hope.
Thanks for the magnesium info. I can't wait to try it. I've been on the brand 25 mg. Toprol for 2 days (taking 1/2 pill due to low heart rate). How long does it take to see improvement? Unlike Inderol, Toprol should stay in the my system longer, but I don't feel any improvement yet.
Hi, wcd, I’m back!—My family and I decided to take a ten-day SCUBA vacation. Once this vacation was over, my wife and I felt that we needed a vacation by ourselves and, thus, we opted to spend three weeks in a forest cabin. It was simply wonderful—Naturally, we love our sons and their families, but after ten days of catering towards them, we felt the need to simply “relax” with capital “R”. At any rate, I see we have quite a response to our postings. This is music to my ears, for there is something to be said about “strength” in numbers. I can see how little by little we are getting closer to a beneficial approach to our problem. Talking about our problem—When we first started our family vacation, I was sleeping wonderfully. The reason being was the fact that my children love some of that Napa Valley wine and I decided to taste some (maybe a little too much) after their excruciating “arm-twisting.” The interesting aspect of this new remedy is that after a few nights I started to realize that I progressively needed more wine to acquire the same affects—That is being able to ignore the tremors. Needless to say, my stomach started to complain, not to mention the fact that I had to pass on a couple of wonderful dives due to the fact that I was not feeling that well. In short, this is most definitely not a panacea for our problem. I would not recommend it to anyone. It can actually be downright destructive. Thank you very much for recommending the “Hypoglycemia for Dummies”. I honestly felt that I had that problem until I talked to my doctor over the phone and he mentioned that all my lab work done over the past two years (the most recent being six week old), did not indicate any problems in the area. I have been taking a spoonful of peanut butter mixed with a little bit of jam just before I go to bed. Honestly, I must tell you I have been sleeping great. That being said, however, as I have stated in my past postings, I have had this problem for three years now. During these three years, my tremors have disappeared for periods of up to three months. I hate to think about it, perhaps, the peanut butter has nothing to do with it. It is simply another lull in the tremor cycle. Who knows! I just simply have to wait and see. It is wonderful that some of the late posting have piqued your interest. Again, I envision our problem to be resolved by someone who serendipitously has come up with a remedy. One more thing which I find rather interestingly—My wife pointed out to me that she has noticed that my problem is intensified during spring time. I never gave much thought about this correlation. Tomorrow, I am going to personally check my medical records to see whether indeed such relationship exists. Would not it be wonderful if all I suffer from is some kind of tree pollen? I will keep you updated. Thank you very much for your concern about my silence. It is very nice to learn that some wonderful human being “out there” cares. I should be more responsive in the future. Your friend, bobito.
Sleep study was done and I got the results back (finally!). Problem is, it didn't show anything. I even had the wake-n-shakes a couple of times during the study itself and they weren't detected!!!!! So I'm no closer to an answer than I was before the study.
The neuro has rx'd Provigil to help with the daytime drowsiness (fell asleep during the MSLT in under 7 minutes for all 4 nap periods). He's hoping this'll help with the tremors. If it doesn't, he'll be referring me to a sleep specialist.
I've read all the posts today for the first time, and it is like you've been writing about my own nightmare. For months now it happens almost every night either when I am about to enter REM or it wakes me up. It is a subtle but clear electric shock mainly in the back of my neck, though other parts or my body can be randomly shaken too. It lasts just seconds but it is the nastiest, unpleasant sensation I've ever experienced, and after the occurrence I can no go back to sleep even when I feel totally and awkwardly deprived of rest.
I was diagnosed with severe sleep apnea three years ago but after beginning a BI-PAP therapy I recovered my sleep for almost two years. Now this tremors like awakenings are worse than sleep apnea. I already visited a neurologist and he has found nothing abnormal. He diagnosed me with stress which I guess is something they use every time they don't know what to do. But what I am experiencing is not stress at all.
I have disappeared for a while so hopefully you will check this because I have some info that may be of help to you. I'll try to check more frequently so that if you have any questions reguarding what I am about to tell you I will be able to answer. To take you back in time I dropped the ball on our blog because school started and life became increadibly busy and I started to feel better!!! By October I was still taking the beta blocker but required no help to sleep or stay asleep and I had NO tremors!!!!! Yippee!!!
This was the case until the 16th of Dec. when my husband changed the PUR water filter on our Kenmore refrigerater. For two nights I had horrible tremors again and so we discussed what was different. This was the only change.... The next day I drank only tap water and have not had any problem since... Maybe we have an intolerance to the charcoal in the filter. The filter was new around the time that the tremors began back in March and it had worn off I suppose by Oct. and so I was feeling no effects. The minute it was replaced the same symptoms reappeared. Let me know what you think about this new finding and if you can trace any of this to your symptoms back to your water filter. I hope you are doing well and look so forward to hearing from you.
My dearest friend, it was most certainly a pleasure to hear from you. Not only hearing from you saying “hi,” but most importantly hearing from you with such great news—You have found the source of your malady, and not only found the cause of it, but you can also immediately remedy it by avoiding drinking water that filters through your carbon system. I’m absolutely sure that everyone reading your editorial is elated by such great news. I hate to say it, but I am going to say it anyway: “I told you so.” Little by little all of us will find what causes our problem and how to battle it. It just fills my heart with joy to learn that one of us has reached the “summit.” I’m pretty sure I speak for all of us: “Congratulations.” As far as my situation is concerned, it has been in remission for the last four months. I have been sleeping very nicely—Zero tremors! Just wonderful. But as I have pointed to you earlier in our discussions, I have experienced these lulls in past years, for them to recur at a moment’s notice. That being said, I think I’m closer to figuring out what’s going on with me. My wife pointed out to me that in the past she thinks that my problem seems to go away during winter and resurrect during spring time. I collected some empirical data and, by golly, she seems to be on the mark. Consequently, I think my problem is related to some kind of allergy (spring allergy). I’m anxiously waiting for the next season to see whether my suspicions are valid. If that’s the case, and I hope so, my next appointment will be with an allergist. By the by, I checked all my water systems, and we don’t have any kind of filtering systems—Darn it! I’m sorry I have been somewhat elusive for the last few months. I have been traveling. One of my sons has volunteered some of his time to an organization called Doctors Without Borders. It was fun going to spend the holidays with him; at least part of the holidays. We stayed in the capital while he worked in the “field.” Anyway, I’m back. Again, I’m soooooo happy for you and your family. Warm regards, and happy New Year. Bobito.
This morning was another morning which made me wake up from the same tremors as the three of you have been having. I am 41 year old woman mother of 2 own and one adopted children with wonderful loving husband and even my loving and caring mom lives with us. My chidren are 23 daughter, 19 daughter and 12 son. I am working from home today and after coming back from the neurologist yesterday, who told me he is stumped by my symptoms and needs some more time to research this, I decided to do my own research. I googled my problem and I found your blogging. I couldn’t stop reading it as Bobito and dwc589 were describing exactly what I feel every night for 11 months already and it is always after 3:30 A.M. and it is exactly the same. I was in a hospital for two days this month and they were having my heart on monitors and I had to beep the doctors when the tremors occurred. The problem is that they last only 10-20 seconds, as you all said, and by the time the nurse practitioner came to check my heart and to feel the tremors, they were gone. He felt only my stomach grumbling. I am also a healthy person, but I had a hyperactive thyroid 7 years ago and I had to take radioactive iodine in 2003 after a severe side effects of the PTU medication, which caused a horrible immune system crash. I recovered quickly and I have been on Synthroid 0.75mcg since then. My thyroid had not given me any problems and all of my latest blood work shows normal thyroid results.
In the past month, the doctors found out that I have a Mitral Valve Prolapse and they put me on Propranolol 10 mg 3 times a day as I was having palpitations and I was feeling like I will faint. I had to call 911 in the beginning of January as I couldn’t breathe and I almost fainted.
So far, I find that besides Bobito, the three of us have heart problem and we take Propranolol or Toprol. Question606 has exactly the same 3 problems I have – MVP, Thyroid, and Acid Reflux ( I also have gastritis and Irritable Bowel Syndrome).
Yesterday, I missed my medication at noon and in the evening I was feeling palpitations, which means that the Propranolol is helping with my heart, but not with my tremors during the night. My physician is clueless what it may be the cause of the tremors and she keeps prescribing me different sleeping pills – Xonox, Diazepam(Valuim), the latest version of Ambien, etc. The sleeping medications help me sleep for few hours, but as you all said, I wake up and then the tremors are even more often than if I hadn’t taken the sleeping medication. They get worst during the second night after I start taking sleeping medications. I found that sleeping medications definitely affect my tremors and make them worse. I have tried not to take them for several weeks and until my body gets rid of the leftovers from the sleeping medications, the tremors are more often.
I even asked my neurologist if the tremors could be as a result of sleeping medications and stopping them suddenly, as I have been taking Diazepam for awhile in 2007 and then I stopped it in the Fall of 2007. He and my physician are certain that my tremors can’t be caused by that. In the description of the sleeping medications it says that sudden stop of this medication could cause seizures, but the sleep study and my neurologist think that my tremors are definitely not seizures even though it may feel like they are. BTW, my sleep study couldn’t catch the tremors either even though I had them in the morning and I was keeping my eyes closed for the longest possible for them to be able to catch them, but nothing came up on the sleep study. My husband and my mom were able to feel my tremors few times, but as you all said, they are very light and they go away very fast by the time you completely wake up. But they kind of force you to wake up…
I have many friends who are doctors and they also have suggested a possibility of Hypoglycemia and I tried drinking soda or sweet juice during the night with no results at all. My sugar level on my blood tests are fine.
This week my physician prescribed me anti-anxiety medication as she thought that I may have an Anxiety. But I agree with Bobito, I am only anxious because I can’t sleep and because of the thought that my body is desperate for sleep, but it forces me to wake up as the tremors stop only if I open my eyes and am I completely alert. My neurologist said that if he can’t come up with any possible diagnosis, he will send me to do another sleep study at Johns Hopkins and to see a sleep specialist, but I am sure the end result will be the same as what Bobito had experienced – this is not a sleep disorder as you don’t have problem falling asleep and sleeping. The tremors are what are waking me up. I am so thankful that you have shared what you have been going through, as this will save me so much time, doctor’s visits and money to do numerous test and come to the same conclusion as your doctors have come. I am so happy that the MRI and CT scans don’t show anything, as I was very worried about a brain tumor too.
I am not sure what to do next. My heart monitor for 30 days is due back on Feb. 17th. I have a very good cardiologist and I will print your blog and give it to him to see if he can come up with something better. He also will have enough data on my heart as well.
I am wondering if I should take the anti-anxiety medication, or I should stay on the Propranolol only. I am not sure if dwc589 has stopped the anti-anxiety medication and if she still doesn’t have the tremors.
BTW, the Propranolol has the least effect on the blood pressure. I also have a low blood pressure, but I am find with Propranolol.
This morning, as I had very strong tremors, I was able to observe them more. The surprising thing was when I turned to sleep on my right side while I was having them, the tremors got stronger. Then as I was feeling and touching my chest, I touched my back and realized that the tremors are stronger on the back. Can you please try to turn while you are having the tremors and see if you will be able to touch your back and check if the tremors are stronger in the lower back compare to the front side of your body. I am curious to find out. I am sure with our group effort and sharing our experiences and test results, we would be able to come up with the cause of these wired tremors. I am exhausted of not being able to sleep without interruptions and dream of one night sleep without tremors. I have been having them every night for 11 months. It is killing me. I have a full time job, busy schedule and a family to take care for. I can’t afford to be not functioning properly…
Well, Bobito, it sounds like we have met another kind soul out there that is unfortunately dealing with our same issue. MimaK, I am so sorry to hear about this taking over your life (because I know it does) and i am glad that our blog has helped to give you info of what we have tried and that it has also given you a feeling that you are not alone in this. I have not met a dr. yet that has really heard of this I even spoke with a sleep specialist regarding this issue. So the worst thing that I have found is that it is unchartered territory. The first question that I want to ask you, since you mentioned that you have IBS, is have you ever taken the drug Reglan???? The reason I ask is that a friend of mine has had the rare side effect of tremors from taking this drug. If you google rare drug side effects for this drug you will find a whole host of horrible side effects all of which she has experieced. I have not taken this drug before but found this out about her when i was talking about my tremors. I have been an open book about this b/c I always want to see if I can find others that have experienced this. The thing that stumps me is why do they only occur after 3:30am. Is this a drop in cortisol? Not sure of that answer.
Back to me. My water therory has not proven to be totally true. Recently I have started having the tremors again. :( However, I will say that the miracle drug for me has been Ativan. I don't have a problem getting to sleep so I don't need it then but when I experience my routine wake up at 4 am i have been taking 1/4 of a tablet and going back to sleep. I may still have some tremors but this masks it enough for me to keep sleeping. If I know they will be severe I will take 1/2 of a tablet. It used to freak me out to take any medication but now I am so thankful that there is something out there that works in this situation. I then can get up at 6:45 feeling like I have had a decent rest and not have my day ahead destroyed from lack of rest or a feeling of being drugged. It is a miracle for me. I would try this before I tried a reg anxioty med. The nice thing is that there are times that I don't have to take any at all. There was a two month span in Oct. and Nov. that I rarely took it. I long for those days again but am happy that something can help me with out me feeling so groggy and out of sorts.
I want to do more research on the water therory because water is so key. The Seven Pillars of Health is one book I read regarding the importance of WATER-lots of it for our bodies. Plus I am taking Calcium Magnesium Citrate by Blubonnet. This is liquid and easily assimilated and absorbed. Both of these minerals are so important. I have heard that niacin is another good one to take but have not tried it. I am also keeping a food and drink log which includes how my night went, how much med was needed, amount of exercise per day.... Just looking for any link I can find.
My heart goes out to you that you are dealing with this but maybe together we can all find something that is the root cause of this and a cure. Please keep us posted on new developments. dwc
Hi to those following this thread. I had not since I don't have tremors, though a family member does have tremors and sleep paralysis. Myself, I have OSA, RLS, and PLMD. Oh, and I have had times of feeling a vibration through my feet, enough that I thought either there had been a minor earthquake or someone was jackhammering in the floor below me.
It's late and past my bedtime, so forgive me for not addressing each post by name. Just some general input here...
Stopping some meds abruptly when it is advised to wean off can cause unexpected side effects. Just because a doctor hasn't seen it present in exactly this manor doesn't mean much. I went off a dopamine agonist abruptly and it caused a neurological problem. My neuro wasn't real pleased with that bozo move on my part. But I now have synesthesia, a condition where the senses somehow get crossed up. Just saying, just because doctors don't know doesn't necessarily mean it's not so.
About sleep studies... The data reported is on what happens while the patient sleeps. Little to no atention is given to awake time other than if something obvious showed up with the heartbeat or with the brain as in a seizure. Since I have limb movement issues and what was concerning me was what they did while I was awake enough to be aware of them, I wanted to discuss that with the doctor (2 different studies, 2 doctors). Neither had any data reported of those episodes, as they were not while I was technically asleep. At my request, one doctor reviewed the test in its entirety and what I spoke of was there, but still never made it to a report. Getting a doctor willing to go that extra mile may take more than a notion.
I understand the frustrations of having things wrong that there are no easy answers for. I wish each of you the best.
I just found this forum after searching for this same sleep tremor issue for about 6mths now! I have found info that seems its not a medical problem at all. It has to do with ur "CHAKRAS" which is very new to me. Ive never been into eastern meds but if u look up "KUNDALINI RISING" symptoms...it may answer something. Its happening to me & ive investigated it more on that route because I relate to the symptoms & was lead there 1st. Something to do with ur lowest chakra rising up thru ur spine to the higher chakra. It creates an internal electrical vibration. I dont know how to stop it other than ive read it will pass but please investigate it being a phoneminon more than a medical issue? Alot of ppl are experiencing this & it hasnt been determined by medical research what it is. Another route maybe?
It took me a long time to respond, but I have been doing some research, tests and being a mother of three, working full-time while not having a normal sleep could definitely explain why time is the highest deficit in my life (after sleep though)…
Dear Bobito and dwc589,
Thank you very much for your responses and support! I know we are all in this situation together and I am sure we will find the answers. It seems like Bobito hasn’t had his tremors for several months now, which is great. I hope they never come back to him. Dwc589, I am sorry to hear that your tremors are back, but this confirms that they are not realted to an anxiety or depression as your medication hasn't helped to get rid of them. Just to be able not to feel them that much, but they are still there.
I have heard about the chakras and I have read about them. You could be right about it. I will try to check with people who have more experience with them. I know people all over the world whose main hobby is working on the chakras and rising their Kundalini through the spine.
From what I have read, the reason may be because there is a problem in the spine and the Kundalini can’t get through it normally which may cause the tremors, but there is still either anatomical or physiological reason.
Anyway, I will share with all of you where I am now with my reasearch and tests, and we can discuss it together and try to find our answers.
I had a MRI with contrast done on my spine and apparently I have a herniated disk at L4-5. Also, they found something like a cyst on my thoracic spine at T4-5 levels. It could be another herniation or a cyst with fluid in my spine cord. I have two very good neurologists and I go to both of them to see what each of them would suggest.
This Friday, I have a MRI on my brain and then 24 hour EEG of my brain (it is like a halter monitor for the heart, but it is on your brain and it records everything for 24 hours). It is great where the technology has gone nowadays…)
I was able to find out for sure that the epicenter of my tremors is in my spine. I had few cases when they were so strong that I could touch my back and sense where they were the strongest. For sure, they are coming from the spine and affect the entire trunk. I can’t sleep any other way but laying down on my back as if I turn on a left or right side, they become more frequent and stronger. I don’t have backache anywhere. I knew I had a disk problem, but I didn’t know I have herniation. I still don’t think this herniation is the reason for the tremors. Something in the spine must have been happening after laying down for a longer period of time (explaining why they are never before 2-3 A.M. or during the day when taking a nap). It is also somehow connected with the brain as it is not in a awaken state, but always during sleep or coming out of sleeping state. As soon as I am completely awake, they are gone. I never ever have them during the day or while I am awake and as far as I read your comments, it is the same for you.
I tried taking Vitamin B complex before I go to bed and inserting a pillow under my knees while sleeping. This definitely helped for more than a week. My “real” tremors almost stopped. It looks like I have very complicated situation, because I also have vibrations from my heart during sleep which I feel very often, but I easily distinguish from the “real” tremors. My heart doctor wants me to wear another halter monitor for another month, but to have it on me during the night. Which will be another obstacle to have a normal sleep, but in the name of the science I will survive one more month…) He thinks I have some type of heart fibrillations, which I believe is the case but not every night ( one or two nights a week). It varies. These vibrations don’t have anything to deal with my real tremors…
I still can’t explain how Vitamin B complex could help, or if it helped only in combination with the pillow and also several layers of blankets and soft covers under my sheets, which allow my back to have a soft support.
My real tremors got back two nights ago being the strongest ever, after I was sitting on a chair and my daughter sitting in my lap for 10-15 minutes (she is 19 years old back from college for the spring break and she is 118 lbs). It looks like it was too much pressure on my spine and probably in the upper part of my back where I have this unknown formation with fluid. The chair had a hard back and I must have pressed it very hard.
One of my neurologists told me that this formation could be causing the tremors as it is related to the upper nerves going around the rips. This formation could be as a result of scoliosis (which is a curve in the spine if you don’t keep your back and shoulders straight). In all cases, it is a rare case, but it could be a probably cause of the tremors. He also is suspecting aorta aneurism (aneurysm), which may not be the case, but who knows.
The good part is that I have very good doctors (neurologists and heart doctor) and they all take it very seriously. We are all waiting on the results of the brain MRI and the EEG. None of them relies on the sleep studies as they understand that is not a sleep disorder. One of them prescribed me very minimal dose antidepressant, which I haven’t taken yet as Vitamin B complex was working. BTW, I have iron deficiency anemia, but there is Vitamin B deficiency anemia, but I am not sure if I have it or not. In any situation, Vitamin B complex supports the nerve system and it helps. You can try it and also you can check for back problems. This could also explain if the tremors are related to the chakras, as a herniation or spine formations could block the energy flow.
I don’t think it is related to allergies or the water we drink. I was in Bulgaria in October for more than 2 weeks and I drunk mineral and regular pure mountain water there. It was great, but it didn’t affect my tremors at all. I even brought some bottles with mineral water here as I love the taste and it is much better than the highly chlorinated water here, but it didn’t help with my tremors. I wish this was the solution though…)
I will let you know as soon as I have some more results. I am still debating if I should take the antidepressant as I am definitely not depressed, but tired and exhausted without a normal sleep. I am still the same positive person as I have always been and I believe we will be able to untie this Gordian knot...:))
Thank u for responding. I defenitatly believe for me that it is not a med issuse as much as it is an "INTERNAL DEEP CLEANSING" more related to eastern philosophy & the Kundalini rising (which is new to me). I have every single side effect & reason to belive this including intuition. But Im open to ANYTHING that may change this. Please do let me know what ur test results are as it will be intreseting for me to know if i should do the same. Ive read that taking anti-depressants will prolong the rising of kundalini...if thats what it is? I dont want to interfer with the others medical experiences by sujjesting something else is happening here, im only talking about my experiences just incase :)
PS im now also experiencing daily, excess electricity in my body & earringing along with hightened senses..all part of an "awakening" process of the coinciousness ive read....maybe 2012 is coming ?? (lol)
If u want to email me personally please do...***@**** (email linda bates)
First of all, I must tell you that I have responded to all your messages, but somehow when I hit the “send” icon the message seems to disappear. I asked my wife to look into the matter, and see if there is anything she can do about it. She simply stated that she did not know what was happening. I asked her where she thought all those messages had gone, she replied: “The same place where white goes when the snow melts”. Not much help there. Anyhow, I was terribly sad to find out that the filter in your water was not the cause of the problem. The quest continues for all of us. Well, spring has finally arrived with full force. Everything is blooming and I’m bracing myself for what it might bring in the area of tremors. As I have mentioned in the past, I strongly believe that allergies are causing my tremors. I know I have blamed other culprits in the past, but this time I’m most certain than ever. I have gone through the whole winter without a single incident—Looking back at my episodes, they (tremors) seemed to have been most active during the spring and early fall. At any rate, it does not hurt anything to believe that a cure is at hand, with the exception of some disappointment. My doctor has, at my insistence, prescribed an allergy medicine, “Zyrtec.” I have been taking it for the last two weeks. And guess what, NO TREMORS YET. Not a single one. I have been sleeping six to seven hours at night, and to my surprise, I have found myself napping in the afternoon for about twenty minutes. I have not been able to nap for the last three years. Oh! Dwc589, I am just elated. You just cannot imagine how happy I am at the prospects. My wife tells me not to get too excited about it because if this does not work, my disappointment will be that much greater. Well, I tell her that I might as well enjoy it while it lasts. To all of you out there, please do not give up. Giving up is not a cure for anything—Many a time I read your situations (conditions) and it mortifies me not to be able to provide any suggestions/advise that could possibly alleviate some of the conditions. For example, I read about the young lady who could not sleep whenever she had to get up early next day. On weekends, however, she slept well. All I could provide in the area of advise was to say that her lack of sleep was most probably cause by anxiety. Perhaps a good visit to a good doctor who could guide her to relaxing exercise would help. I never did send her my advice. I felt she had received plenty of advice. I was wrong on that. I should have acknowledged her request for help. Some times just hearing from someone is just as good therapy as anything. I experience this therapeurical affect when I hear from dwc509—dwc509 it is always simply great hearing from you. You were “my first” and I’ll always have a warm place in my heart for you. At any rate, I will keep you advised of my situation. Your friend, bobito.
Hi, again, dwc. We have not heard from you in a while. I must tell you I am somewhat concerned about your welfare since I learned that your tremors had not been caused by the carbon in your water filter. Any new developments? As for me, as I mentioned on my last posting, I'm "on top of the world." Spring is here in full force and I have not had any tremors. The next three to four months are going to be full of anxiety and, hopefully, positive expectations. I must admit, going to bed every night is a psychological burden. I fear this is the night when the tremors are going to manifest themselves again and, therefore, my theory of allergies being the culprit down the drain. Please, let us know how you are doing. Your friend, bobito.
It was so great to hear from you and to know that you are doing so well. All I can say is keep hoping and don't let your worries take over. Keep celebrating NO TREMORS and try not to focus on when and if they might be back. If they do come back I would HIGHLY recommend Ativan to be taken at 4:00 a.m. or when you wake up with the tremors starting. (only 1/4 of a tablet) It is not a cure but at least it can allow you to rest through the tremors. I have had a great five nights with no tremors!!!! I have no idea what I am doing differently but I love the sleep (A full 8 hours!!) Keep me posted on the allergy med. I will be so curious to see how this works. It sure seems like a strong possibility.
Your tremor buddy : ) dwc589
Hi everyone! Seems this is happening to alot of people & everyones med tests shows up with nothing. Im thinking its not medicle at all. Ive been taking a benidryl & a muscle relaxer before bed. It doesnt stop the tremors but I get a full nite sleep :) I have been now having ecess electricty & vibrations thru the days off & on too! Kinda like a power surge. It gets worse if I give it attention. It seems to slow if I get outside in nature & ground myself. Atleast Ive found something for sleeping.
Hi everyone, I am a healthy 29 yr old male. Finding this site has been a mixed blessing. I read the stories on here and they are very similiar to mine. From reading people's experiences on here, I feel that there isn't a specific diagnosis or cure for what we have. I can feel for everyone on here and the frustrations they have gone through looking for a solution and finding a cure.
I started having vertigo about three weeks ago. The combination of having vertigo and work (financial industry) has caused me a lot of stress lately. All week I have been experiencing tremors when I let my body relax and try to go to sleep. The more tired and relax I get, the harder the tremors attack. It as if they are trying their best from allowing me to fall asleep. I have sleep an average of two hours a night since Monday. I find it extremely hard to function but I got to get back to work tomorrow and try to live a productive life whether or not I get sleep at night.
I have another appointment with my family doctor tomorrow. I doubt that he will telling me anything enlightening. I just hope that he gives me something to allow me to finally get some rest. I am soo exhausted....
I have found a benidryl & a muscle relaxer b4 bed has been the only thing to allow me to sleep w/out dreams all nite. The tremors are still there but i dont wake till morning :) This is happening to alot of ppl that are finding no medical results. Some even say that it may be something to do with 2012 & a magnet force in the atmosphere?? IDK but it is really odd that its happening to so many! I have no med ins so I hesitate to go in as I have a feeling that I know what it is & not of a med nature at all. PLEASE let me know if u find out otherwise ok.
THX & good luck...linda
Exactly the same for me & glad u slept some :) but it also helps me i I take a mild muscle relaxer to. I dont like tooo many sleep aids becuz I dont want to wake up groggy. Please let me know how ur med test go as I cant afford medical. I think ull find ur ok tho as far as it being a medical condition...but please still check to be sure.
Are u doing any meditating or practicing anything new or anything upsetting in ur life & how long have u had the tremors? Mine started in feb & havent stopped but I started having besare things besides this for awhile. Thyv stopped then the tremors started. sometimes I also feel I have extra electricity & power surges untill I go outside & get grounded! I have talked to ppl outside this forum with the same experiences. It even happens during a nap!
I have to tell you that going through that experience was very challenging. I think the lack of sleep and the tremors had me going a bit crazy. Leading up to it I had a bad case of vertigo and a lot of pressure at work.
I am not going to pursue this any further. I feel the more I think about it, the worst it will become. My symptoms have already been improving in the last couple of days.
I think that the combination of stress and vertigo caused the problem. I could def be wrong though. It's hard not to think about it but I will try my best.
I just feel blessed for so many things right now. It made me realize a lot and make an effort to stop taking things for granted. I feel blessed to have a great family, friends, coworkers, a place to sleep at night, etc..
I hope everyone the best and I will check the blog if I can be of help to anyone.
OK then...it was the same for me, the more I investigated the worse it got. When I didnt focus on it my sanity came back even tho I still tremor. I was lead to investigate eastern philosity, (which I really know nothing about) but that it could be the bodys main energy centers,the CHAKRAS aligning...if u feel any physcological & electrical issues later...then check out the symptoms of KUNDALINI RISING. I have had all the symptoms of that & its a good thing if thats it. But its scary no dought! Well let me know in the future if u find it to be a medical issue that I should investigate ok. Tell then, sleep well & take care! Linda
I'm a 43 year old woman who has been having the "wake and shakes" for about 2 months straight. it happens whether I'm taking a nap or during regular sleep. I had a prior bout of problems getting off a short term use of Lexapro and Ativan (low doses for 2 months) and thought my shakes were a sort of "withdrawal" and expected them to go away. Then I had insomnia for a few weeks, and finally started a new medication to help me sleep. It is called Remerol, and it works wonders for you with sleep problems. However, I still get the inner trembling every time I'm waking up. If I got completely conscious it will stop, but in that in between sleep and awake...it's always there. I can't tell if it's palpable to anyone but me...I hold me hand up to see if it is shaking, but it's not. It's all internal. Every doctor I've told has looked at me like I'm a freak...no one has said, "Oh, ...that is called ______" ....I see on line that others have had this condition, and while it makes me happy to know I'm not alone, I just wish I could figure out what has caused it and how to make it go away. From reading your posts I know all of you are as confused and frustrated as I am, but I wanted to add my story...there's strength in numbers.
Thanks for listening....
I noticed you two haven't been on here lately so I can only pray that you have had success in conquering this. I have read many of your post, when I first read them I couldn't decide whether to laugh or cry so I did both. I never knew there were other people that were experiencing the same thing I have been for the last 4 or 5 years; I have tried to explain it to doctors without success but with the description you have provided I am now able to describe to them what I'm experiencing. As you can imagine I have not had a good nights sleep in quit some time and have felt so many times as though I couldn't go on. My days are spent trying to stay awake and my nights are spent trying to stay asleep. How ironic is that? I won't go into all of my past but I will say that I was diagnosed with stare seizures about a year and a half ago. I had a very difficult time while trying to find a medication that worked for me yet didn't cause awful side effects. I am now taking Lamictal which seems to work fine until I go with a couple of nights without any sleep. I have been asked could these inner tremors be seizures but they are only in my torso area which is totally different from the sensation my seizures.
I also was diagnosed with a mild case of sleep apnea when in the supine position which is also ironic because I usually have these tremors while laying on my side and when I have one I feel compelled to move to my back. Even the sleep I do get feels like I'm not really asleep, my mind is constantly busy. I keep praying that one day I'll have a normal nights sleep but it just never happens. I'm sorry I said I wouldn't go into a lot of history but I did. I hope to hear from you two but I also hope I don't and that maybe you have found success in your search for a cure for this.
Take care and thanks for reading this.
Dear Pandd15/dwc589-----I have read your posting with a bit of sadness—Sadness to learn that one more person is suffering from this mysterious malady. I often wander how many more OF US exist out there, who are presently suffering like the rest of us, and how many exist out there who have suffered, but have found some type of a cure. I truly believe that for every human body dysfunction there is a cure OUT THERE, either via a medical professional who knows about it, or an obscure medicine that, even though is prescribed for other problems, carries the healing power for ours. I think that after all the personal research on our part, and all the myriad visits to our health providers, it is difficult to find that drug that can be classified as the “silver bullet.” This is, for the most part, a matter of money—Pharmaceutical companies will never invest money in R&D in a drug that cure a sickness that is not afflicting millions of people, such as AIDS, diabetes, etc., etc. Which leaves us the hope of what I outlined above—Either finding someone who has found the “silver bullet” or find that one doctor that have stumbled upon this and have successfully cure it. This last option I’m pretty much giving up on. I don’t think I can take more battery of tests—Sleeping studies, visits to the neurologists, cardiologists, psychologist, on and on. Not to mention the number of drugs that have accomplished absolutely nothing, but harm other “normal” systems in my body. This is not to say that doctors are not helping—They all are. They have it in their hearts, they are trying everything in their power to help us, they just simply don’t know. I went to the doctor a month ago for an unrelated minor issue, he read my records before meeting me—One of the first things he asked me was: “How is that tremor problem coming along?” I simply stated: “They are gone.” This is not to say that we should not share this with our doctors, I just have had enough. On a more personal note, I thought allergies were the culprit. Not so—I did not have allergies this year, but I sure had the tremors. My symptoms seem to disappear for a couple of months and, just when least expected, huge tremors arrive with a vengeance. I have been trying to keep a journal of my daily routine and diet to see if there is any correlation that might trigger the tremors. I have been doing this for three/four years—So far I have not been able to determine any correlation. One thing I can tell you for sure, I’m less and less intimidated by them. This helps me tremendously psychologically. I used to go to bed with this tremendous fear of when I would be “jolted” and spend the rest of the night awake waiting.” Not any more! Since I’m not intimidated any longer, I sleep very nicely when “they” don’t show up. When they show up; well, so let it be. At least I don’t spend potentially good sleeping nights wondering when they will show. Does that make sense? As I said before, there is help on the way—I have this strong feeling that someone will read our posting and say: “I can help these people!” It could be a doctor or just someone who has had it and found relieve. I know he/she is out there. We need to smoke them out—How? Easy—Let’s keeping on talking to each other. Strength in numbers is most definitely effective. By the way Pandd15, I have done my share of laughing and crying as well. Fortunately, now a days I do a little more laughing than crying. Believe me you will see that the more time that goes by, more tears turn into laughter. TO dwc589: How are you?. I love to hear from you, even if it is just a “Hi, I’m fine.” This will fill my heart with joy—Happiness to all of you who read this—bobito.
Thanks for your reply, in this case misery doesn't necessarily love company. I hope one day we can all find the "silver bullet"
My tremors are like yours, they come and go and right now I've been without them for a 4 or 5 days but unfortunately my sleep isn't any better without them. If I could just get a normal nights sleep.
I'm hoping that if I can keep my faith God will come to my rescue.
First of all, Pandd15...so sorry to hear of your ongoing struggle. The lack of sleep or interupted sleep can make you feel like you are loosing your mind for sure. The tremors definitely intensify everything and make you feel even more out of control.... I'm glad you stumbled onto our site because it DEFINITELY helps to know there are others out there that understand what you are going through. Bobito as you could read in the above blog was the voice of reason for me and helped me through one of the most difficult times in my life. I have said this before but, THANK YOU, Bobito!!!!! I, like Bobito, have tried many things but now I am working on my diet and just maintaining balance in my life. My mother has been having sleep issues and is meeting with a nutritionist to create the right chemistry in her body. Watching the number of carbs seems to be a big thing as the carbs turn to sugar which is a poison to your body. LOTS of veges and protein seems to be the name of the game- avoid sugar! I have had a wonderful summer with very few if any tremors. I keep a record of them. I feel like my body is back in balance where it felt hopelessly out of balance before. I still take the Toprol and rarely need an Ativan to sleep. I have it if I need it which is comforting but I have not refilled my 1 month supply in 5 months! I would highly recommend getting this prescription so that you could take this either before bed or when the tremors wake you. 1/4 of a tablet (at 3 or 4 a.m.) would often do the trick for me and I would be able to sleep through the tremors. It really helped me out of a difficult sleep deprived spot in my life. There where nights that I would have to take a whole tablet before bed. My Dr. encouraged me to take the med and sooner or later I would no longer need. This theory has been true. Now if I am all keyed up right before bed I will take a " Source Naturals" timed release 3mg Melatonin. Spend time in the sun, getting fresh air and smelling the flowers...in other words make time to feed your soul. "Eat, Pray, Love" was an enjoyable read to remember the importance of balance in your life. I don't necessarily agree with everything in the book but loved the read. It seemed peaceful and thought provoking. It is in all the book stores, target, etc! The author's name is Elizabeth Gilbert. It really was helpful to me so maybe have a nice cold drink and find a comfy chair and enjoy!
Bobito, I too love hearing from you!!! It is always a bright spot in my day! Keep in touch! dwc589
Thank you for this thread. I am another sufferer. Thank you for describing it so well. I also have jerks as I fall asleep but the tremors are certainly the more troubling aspect. I have a sleep clinic on Monday and am praying for answers. I also have a CT Scan and EEG scheduled. I read this whole page and hoped for an explanation by the time I got to the bottom. I'm sorry for everyone that such is not the case. This all started for me after an inner ear inflammation (labyrinthitis). I had sleep issues before that but nothing so debilitating. Praying for healing.... I'm a 32 year old mom of four little boys. I just can't afford to feel this way all the time!
I am glad I found this forum. I thought I was alone. I don't think I have the same disorder you all do. But I still experience the same frustrations.
I suffer from two things. An essential head tremor diagnosed over forty years ago when I was fifteen. And injuries from a car accident ten years later where my spine was compressed after I was ejected into the top of my car.
They say essential tremors don't seem to bother people during sleep, but after injury it does seem to matter. My upper two vertebrae rotated in opposite directions and I tore or strained a lot of muscles in my head, neck, shoulders and upper back. There is so much movement in that area of the body that we never think about. But when it's injured, you are very aware of how much it matters. Especially when you lay down to rest. Think of it like a suspension bridge on your upper back. Think about all the movement in your back. Those strap muscles hold the upper part of our bodies together and allow us a great range of movement. When they don't work right or are in pain, the consequences are usually noticed.
I still have chronic pain due to those head, neck and back injuries. The tremor just makes it impossible to sleep. For almost thirty years I have battled sleep deprivation because of all this.
If my head didn't shake when I lay down I could probably deal with everything else. But it does. Along with the head tremor my upper back, can spasm badly if I am really having trouble. Perscriptive drugs are too hard for me to handle. I've pretty much tried it all over the years.
So far the best thing is melatonin and herbal sleep remedies that knock me out for a while during the night. After I wake up the aches and pains bother me the second I come to.
It's very difficult to live this way. I've considered sleeping in a hard cervical collar to at least take care of the shake. That may be my next option.
I've almost always slept on a couch so I can prop half of my body against the back of it. Laying flat spreads out my shoulders and my head shakes. I've thought how nice it would be to sleep in one of those body baskets they use for rescues at sea. Lined with memory foam. I would love to have such a narrow bed that could cradle my shoulders and arms to my body. And keep my spine in perfect alignment to take pressure off my neck and back. I would also need a cervical neck support collar or pillow. That would probably be the most comfortable I could imagine.
It got to the point a couple decades ago where it was just easier to stay awake most of the night. Sometimes I do get a good night's sleep, but not too often.
I'm sorry anyone else has to go through this. I hope my story isn't too depressing. I'm thinking of building my own "cradle" to sleep in.
I am going to a pain clinic next to see what they can do.
Reading about these tremors has not produced a solution for me but has caused me to wonder ever more. I am a 61 yo male, in good health, I have a couple of heart stents and have been diagnosed as "prone to internal scarring" and "statin allergic." (I stopped taking statins about a month ago so I know those were not the cause of my strange symptoms.) Out of the blue, usually at rest, I feel this internal shivering in my body, sometimes in the upper chest, often in arms and/or legs. This does not happen during the day when the adrenalin is working, only when I am resting, sleeping (I wake up from the shaking) and it is always internal - no one else notices. I have never been a "cold" person, The only thing I can think of is that I began taking Plavix, a blood thinner, about 3 months ago. My BP in the AM is around 120/70 and pulse around 50-52. I have an old hernia "knot" that has been bothering me but MD says no hernia. No fever, no night sweats, no typical chills. I am dumbfounded...any ideas?
I have struggled with sever sleep disorders fro over 9 years now. I have been to hell, I have to say. Once I went for 3 months at a time with virtually no deep sleep, and no more than a total of 1-2 hours of severe broken sleep. I have periodic limb movement disorder, restless legs syndrome, some dystonia-type reactions occasionally (seems a reaction to some meds), svere hypnic jerks (especially related to med changes, etc..), and I have 24/7 non-stop internal tremor (which sometimes feels like buzzing, rumbling, electricity, etc..) Most of the time, feels EXACTLY like high speed vibrations. It's non-stop. Worse, it seems, in the middle of night and early morning hours (until I get out of bed), but still continues non-stop. These tremors have gone on for over 3 years without ever stopping for a day (let alone an hour). Before that, felt more like electrical activity, shooting in all directions, in my legs, for years. I always feel like I am plugged into an electrical socket. Nowadays I get around 3 hours of less disturbed sleep a few nights a week, which is a miracle for me. But, overall, my sleep is disturbed throughout it all (except for some of these 3 hour periods). Anyone else have it non-stop? Anyone heard anything from doctors about this? Totally neurological, but of course since the docs have no clue, they attribute it to anxiety. Garbage. Feel free to email me people, too.
I meant to add that 90% of the internal tremor and sensations are in my left leg, and 10% in my right leg. Also have it in lower back. If I mess up on my meds (which is rare), I have it 10000% all over.
I am so happy to hear and read all this information, and that I am not alone, I am 39 yrs old, and for the last 3 months I have had what some of you described as tremors, I have them only at night and wake up after about 5 hours of sleep with what feels like an earthquake in my body, and its more when I sleep on my sides.. It affect more my arms, upper shoulders and my legs. I lasts about 10 seconds then I wake up and it goes away, then it happens about 2 more times till I end up waking up for the day. I seen my Physician and he ordered all blood test, all came back fine, I had MRI came back fine, Heart monitor for 24 hours that came back fine..Due to have an EEG next week..My doctor seems to think I guess its in my head cause now he wants me to see a psychiatric doctor..I do suffer from anxiety and take medication for it, and do have stress in my life, I think he thinks I may be having tremors or anxiety while I sleep..Im just clueless on what else to do, I have been coping with this for some time now, and I deal with it although it does get very fustrating on why there happening while all my tests have come out fine..I just wish I had the answers to solve this. I really appreciate all the information here, and if anyone has any advice for me I'd appreciate it, or if there are any other tests I should be doing..I dont know if my physician will order any more stuff for me..thats how I feel since he wants me to see a psychiatric doctor well that dont make me feel to good, I am thinking of asking my Neurologist after if this EEG comes back fine if I can also do a sleep study. Thanks all and best of health to everyone.
I have noticed this discussion is fairly old but I am posting here hoping that those who posted here before will check back and continue to be active. I am wondering how everyone is doing as my condition is getting more frequent. I use to never have them at all, to a few months apart, to now every night. Sometimes it is a internal tremor and sometimes it is a light physical tremor occurring mainly in both my arms (too shocked when these episodes happen to notice where else I am shaking). I sit up and these will resolve themselves right away or in a few seconds. I am trying to find what is causing this as sometimes I wake up to it or sometimes it happens when I am in twilight sleep about to fall into deep sleep.
Indeed, I have been negligent when it comes to "checking" in with all of you. It so happens, however, that for the longest time I did not have anything new to report. I did not want to share with you any good news until they have a certain degree of scientific reliability, rather than just a “gut feeling.” I have something to share with all of you now, which has been extremely positive for my condition. That is, I think I have found a very effective and benign medicine (silver bullet) that has helped me for the last three months without fail. I think all of you would agree three months represent pretty reliable empirical data to ascertain the efficacy of any medicine, considering that nothing has worked for us thus far. The medicine is called Amitriptylne (Elavil). I take one pill daily (10MG) before I go to bed. It is a very old medicine (about thirty years old) and apparently works for myriad maladies. Again, it has been working wonders for me. And, based on all the research I have conducted on its side affects, etc. etc., I have concluded that there is hardly anything worth being concerned about. It is not a narcotic and one can stop it any time without any ill affects. How did I come about to find my “wonder” drug? Easy, I simply asked my sons (they are both doctors) to discuss with his circle of friends my condition and see what they think about it and whether any of them would take a “shot at it.” Well, one doctor did—He is an old doctor, a gastroenterologist—Yes, a gastroenterologist, suggested this medicine. He said over the years he has found this benign medicine extremely effective for a number of medical conditions that have a history of being misdiagnosed—No one really knows why it works so well on certain, people with “mysterious” conditions. At any rate, I am very happy to share this bit of information with all of you. I know it is a long shot, but after so many test, studies, medicines, doctor’s visits (cardiologist, sleep specialist, neurologist, psychiatrist, psychologist, allergist, to name a few) and EKGs, perhaps it is worthwhile asking your doctors for a prescription. Who knows, it might work for some of you the way it has been working (cross my fingers) for me. I’m now getting six to seven hours of uninterrupted, beautiful sleep every night. That’s not bad at all, considering; first, that for the last two years I was lucky if I could get two hours of uninterrupted sleep without the tremors waking me up and, secondly, being sixty-three years old. Cwd589, I hope you have a chance to read this. I also hope you are doing just fine. Please let me know. Your friend, Bobito.
I just read your message sent directly to me. I tried to answer you, but the system isn't very accommodating--It keeps on rejecting it. Instead, however, I have posted my comments on the latest news on my condition in the general MedHelp web. One thing I failed to mention was some additional information on a practice I have been engaging to help alleviate my condition. I most certainly don't know whether this practice has helped me or not, but I have been doing it in conjunction with the pill I mentioned on my latest posting. These new "therapy" is: I eat my dinner at least three hours before retiring to bed. If circumstances dictate I eat before going to bed, I force myself to take a 20-minute walk before going to bed. Again, I don’t know how much this helps with my situation, but I’m simply afraid to give it up since I started this practice at the same time I started taking the pill. Since this cannot be harmful. I’m going to keep on doing it. My children tell me this is a good practice anyway, whether sick or not. Hope things are improving for all of you—Have hope, I truly believe something is on its way to help all of us. If my pill stops working, well, what the heck, I “got” out of it three wonderful months of sleep. Your friend, Bobito
Writing again to report my Neurologist told me this is called Nocturnal Myoclonus.
He says it's nothing serious & nothing to worry about (other than not sleeping!!)
He prescribed Neurontin. I'm currently taking 400mg which is a low dose. It works great..helps me sleep with not groggy side effects in the morning & non-addictive from what they tell me.
My symptoms: vertigo 2 months ago - night tremors began 2 wks ago.
Each time I try to fall asleep I get a "tremor/twitchy" feeling in my body (arms, abdomen, legs, neck, etc) It sends a bolt of energy. It's like my brain is telling my body "DO NOT FALL ASLEEP!" This happens all night long - everytime I try to relax/sleep. I had a catscan of my brain with contrast - that was normal. Again, my neurologist says it's nothing to worry about and similar to RLS. Doctors have also said it could be brought on by stress. They've said vertigo causes stress even if you are not aware you are stressed.
Still researching my night tremors... Since I'm 41 yrs old & have NEVER had sleep problems or anxiety in my life, it's really hard for me to believe anxiety is the cause but all my tests keep coming back normal (brain scan, ultrasounds,bloodwork, etc) I found this website that may be helpful to those of you with night tremors - take a look & let me know what you all think.
Hi Bobito and questionone,
Bobito great to hear from you!!! I almost hate to say this for fear that things will come back but I am doing great!!! I am looking back in my sleep journal and I had tremors on 9/17/2009 and again March 5-9, 2010 and that is all I have to report. I have been taking Melatonin by "Source Naturals" 3mg timed release. I find this at Whole Foods. I am also regularly doing yoga, cardio and strength training classes. I am so praying that this condition NEVER returns for me and that it will permanently go away for each of you as well. I am making a note of the med that you began, Bobito. It sounds like a miracle drug for sure!!! The other thing I am doing which I feel has had a big impact is to drink a Barley Max drink each morning 30 minutes prior to eating. This is from the Hallelujah Acres website which is "hacres.com." I feel that this has been something that has brought balance to my system. You can read about it on their site if you are interested. I think of my tremor buddy and how you really saved the day for me with your kind and encouraging words at a very difficult time for me. Hope this note finds you doing even better!!!! Have a happy day... hope the sun is shining brightly for you today!!! Your buddy, dwc589 : )
I'm somewhat happy to here your story, because my mentally delayed son of 9 years is having similar issues. We thought we were alone in this. My son is currently at Children's Hospital in Denver. His tremors got so bad that they progressed to seizures and blackouts and so he and my wife were flown to Denver. They put him on Depacote and Keppra to help him sleep. However, the tremors continue. My son lacks speech and so we have not known what this is like for him - until now. Many, many nights in a row he would sit up with terror in his eyes and not want to sleep. Your blog and others have given me a better understanding of what he is going through. THANKYOU!
The sad point is they are releasing him tomorrow with no answers. These are top doctors and they have no answers, only that it must be multple things happening in his brain. They say it won't kill him, but the neurons are not firing correctly.
We have been to different hospitals several times and had the sleep studies, MRIs, EEGs, etc, but no answers. Also, he has never had candy, pop or junk food of any kind and does not like sweet foods. We put him on a complete organic diet about a year ago and he only gets deep rock water.
I don't know if anyone posts to this thread anymore but I thought I would post my recent experiences. I find it interesting bobito that Amitriptylne (Elavil) seems to be your miracle drug. When I first described my inner tremor like symptoms when almost into a deep sleep to my doctor about 4 months ago, he started me on Amitriptylne. I really think it has been working...until last night. I was awakened by an internal tremor worse than what I had been having 4 months ago before starting the medicine. I'm really thinking that they may be returning because since Thanksgiving, I have stopped my routine of exercise that I was doing at least 3 days a week plus by lack of better judgement, I'm going to be pretty late and not getting the sleep I should so I'm probably more tired and my body is trying to tell me something.
Like some of the others who have posted, I have some of the physical problems they have shared. I have MVP with PVCs (premature ventricular contractions) which I do take a beta blocker for, Atenolol (Tenormin). I don't seem to have a problem with getting what I think is adequate sleep. When I get to sleep, I sleep through the night, however, I do get woke up with the inner tremor, lay there (with my eyes closed) wondering for a few minutes if it was something serious, tell myself that it probably isn't and go back to sleep. However, last night's episode is what brought me to the web to research this odd symptom of inner body tremors while sleeping to see if anyone else experienced it and if there was a diagnoses for it. That's how I stumbled upon this thread.
To add to my health issues, I am a 52 yr. old female going through menopause. I had a complete hysterectomy one year ago. I've heard that this symptom can be a result of menopause. I also have scoliosis. I had surgery in 1998 to have rods inserted along my spine to straighten my curve. So I also wonder if some of this isn't neurological because of my crooked spine.
Something I've wondered as I read all these post was what kind of beds does everyone sleep on. I've slept on a Sleep Number bed for about 3 years now. Not too long ago, my husband woke up after having just drifting off to sleep and asked me if the bed was shaking. He said it felt like it was, that it felt like there was an earthquake or that the bed was moving. I told him, no, that it wasn't. I told him about the times I had felt the same thing and that I had been experiencing the inner body tremors. Now I'm wondering if he isn't starting to experience them also. Could it be our bed?
Anyway...I hope someone out there is still reading this thread and may feel led to comment or contribute their thoughts. It would be nice to know that doctors have a diagnoses for this and don't look at you like you're crazy and just imagining all this.
Well, my friend, two issues I would like to address "right off the bat."First, doctors do have a tendency to attribute maladies that they don't understand to "it is all in your head." My response to that diagnose is very well, so I have a head problem, could you please fix it. My point being that I don't care where it originates, I still have a problem. Second, it is not you or any of us going crazy. It is a real medical problem, which interferes with our sleeping patterns. Back to your issue--Yes, Elavil has helped me tremendously. I take 10mg before going to bed. I have gone up to six months without experiencing any tremors, whatsoever. Sometimes, I have felt the tremors. They are not as intense as they were without Elavil. Every time I experience them, I simply take an additional 10mgs of Elavil and I go back to sleep. The next night I go back to 10mgs. Lately, however, I have tried to split the pill in half to go from 10mg to 5mgs. So far so good--no tremors. As a friendly bit of advise, I would recommend going back to your exercise routine. Exercise has been of tremendous help to me. In fact, I truly believe exercise is what is allowing me to reduce the Elavil by half. I really believe it will be unrealistic to expect the tremors to disappear all together. We just have to learn how to deal with them by learning little by little what is it that we do/take that keeps away as much as possible. It is rather remarkable that you and your husband are experiencing the tremors. I don't know about what beds can do or not do to you; but I would most definitely take a good look at your diet. Perhaps, there is something that can be identified as the culprit. I really believe we experience the same problem, but the cause is different for all of us. Just like medicine side affects--Not all of us are affected the same way. Well, my dear friend, please do not dispair. When I first experienced the tremors I thought that was the end of the world; especially after the myriad medical testing I endured, to no avail. Today I am very confident that I have them under control. A little bit with Elavil, a little bit with exercise, a little bit with mental power by not allowing them to intimidate me any longer when they raise their ugly head; sometimes up to six months without tremorss. Please, keep in touch. Please, don't give up your exercise routine. Bobito
Just wanted to thank you for posting everything that has been happening to you.
I don't know if this will help anyone else, but I just went to my Chiropractor and had a treatment. I was able to sleep all through the night. The tremors were there, but ever so slight. I will go back for two more treatments about a day apart and see if there is any more improvement.
I also am drinking Coconut Juice that I got at the health food store. It is supposedly full of electrolytes, which is excellent for nerves. I am grateful someone posted this on a different website. It has worked wonders for me.
I also am taking Lecithin as well as a B-complex for healthy nerves.
Hopefully, this will be helpful to others and we can all get a good night's sleep.
I read this entire thread with great interest and am amazed at the similarities in my own experiences with sleep tremors. While I am relieved that this appears not to be a serious medical condition, I would still like to be able to go to bed without fearing the 3:30am wake-up. My story: I am 55,peri-menopausal, take atenolol for borderline high blood pressure and Nexium for heart burn, have MVP, have taken Paxil in the past for mild anxiety symptoms (palpitations, mild anxiety), but have been off of it for over 2 years. I see a cardiologist regularly for MVP and recently saw a neurologist when my "shake and wake" symptoms started. I had an EEG, and MRI of brain, EKG, general blood work - all with normal results. My tremors almost routinely start at 3:30am and continue until around 5am. They seem to be tied to hormonal changes and occur more or less on a monthly basis and last for about a week. I have experienced them for about 8 months - but not every night. MY GP, cardiologist and neurologist don't appear overly concerned- since the tests have come back OK. I am able to function the next day when they occur - I don't seem more tired - but I do wake up with a dull headache - that goes away as the morning progresses. I have also been seeing a PT for muscles in my shoulders and neck that are like rocks. My tremors feel like muscle spasms/twitches that last for 10 seconds in the back of my head. I am interested in hearing how everyone is doing - and what they have found that helps with eliminating or minimizing their events. The only thing that my doctors said to try was to take a Xanax when going to be or to go back on Paxil - to see if that helps. I am not sure that I am ready to do this- with the side effects that it has.
Are you still suffering from the same symptoms, which you experienced in 2007/8? Have the symptoms evolved into a higher level or devolved into a lesser state? You may need to review and compare your present symptoms with those of 2007 or earlier carefully and objectively in order to reflect upon a decrease or regression in the syndrome.
You may be surprised to know that your syndrome may not be classified under tremors; it does not seem to fit into any of the established tremor regimes. In other words, it might possibly be misleading to describe your syndrome as tremors. “The little black book of neurology”, 5th edition, ISBN: 978032303955 (2008), for example, states that “tremors disappear during sleep”. This is a very strong statement. Your tremors are just the opposite of the established view. Your wife did not note any tremors on your body and you yourself think it is internal. For now however, let us use the word tremors for reference.
So what could it be? Let us now propose a few questions, the answer to which may shed some light into the origin of your illness.
1) Have you experienced fasciculations, or twitching of muscles at any stage during the syndrome or in the period just before the onset of the sleep tremors? If you have noted twitches, then, which part of your body were they occurring or occur and how did these fasciculations correlate with the various stages of remissions and relapsing of your sleep tremors?
2) Are you exercise intolerant (you may have overlooked this)? Exercise is not the cause but you need to establish whether you are exercise intolerant.
3) Do you experience excessive sweating?
4) Are you suffering from fatigue, no matter how subtle, especially during remissions?
Now, let me invite you to ride a reverse time machine using you cognitive “faculty” and travel to the first time when the tremors appeared. This is the origin which you set it as the zero position. Then travel from the zero back to six months or so and recall exactly what you had been doing.
Did you travel abroad? Did you carry out any work with any chemical, e.g., during DIY? Did you camp in the woods? Did you take long cycling trip which required camping? Did you have sore throat, say after a swim? Did you have flu? Did you have headaches before the onset of the tremors? Were you on any medication? And so on…. And do you have anyone in the family with any neurological problems?
It is very important for you to consult a knowledgeable specialist in neurology to rule out any cancer of the lungs and the brain, as well as ALS and MS. Small-cell carcinoma of the lungs can cause muscle twitching. You may also ask your neurologist to send your serum for measurement of antibodies against VGKC, in case you have autoimmune responses.
I am 34 year male from India..I am having the same thing which you guys have mentioned here. I am feeling bit well after reading all these thing. One thing i would like to mention that i have bit of everything which you guys have discussed. Like Stress, B12 Deficiency, MVP, I had small injury in my back while exercising and i had MRI, but doctor said all is well. There is no need to worry.
I would like to tell you about my story...I first felt tremor in the year 2000, when we had earthquake in the western part. It was all about the fear...I felt it for couple of nights..I did not understand then what was it. But after 12 years in 2012 it came again. This year in Feb i felt tremor and could not sleep whole night. My uncle is Doctor so he prescribed me Valium. I had it for two days and then everything was fine.
Then again couple of days back it all started again.. I am taking Valium from last 2 days. Lets see what happens.
Please advice me what to do? I am going to see neurologist tomorrow.
Thank you for your reply to me of Jan. 27, 2012. I just read it. I wanted to update you and everyone that I saw my GP doctor on Monday. After describing the inner tremors and what also seems like a racing heart in the middle of my chest when this happens, she sent me to the Cardiologist where they put a 48 hour Holter Monitor on me. I see the cardiologist Friday for followup and results of the monitor reading. I woke up several times Saturday night with some of the worst "racing heart" or "inner tremor" feelings than I have had in a long time. It was pretty scary and I thought maybe my heart would continue to act this way all night and I wouldn't wake up the next morning.
Anyway, I hope to let you know what I find out Friday. I'm taking along a copy of my post from January 26, 2012 to see if it will help them gain any more insight into my problem(s).
Hi, dwc- This is bobito with great news! I sincerely hope you have the opportunity to read this posting. I think I can say, with a high degree of certainty that my tremor problems have "left" for good. I have not felt a single tremor in about a year. The only medicine I have been taking is 5mg of Elavil. I started with 25mg. I am now down to 5mg, which is half of the smallest available pill. I just cut them in half. My doctor tells me that I am just using the half pill as a placebo. At any rate, again, I have been completely free of tremors and sleeping like a baby. I just wanted to share the good news with you. Please, let me know how you are. You always in my thoughts. Warmest regards, bobito.
Ive had this for years and it is nothing to worry about, even though it is unsettling. It is in the family of sleep paralysis. The best way to describe it is from my own experience. My brain senses something is wrong or danger is near while I am sleeping. So it wakes up my body too quickly. I am caught somewhere between a dream state and a rapidly awakened state. It last for about ten seconds. My whole body will tremble feeling like individual muscle fibers are pulsating. Very often I will see patterns or shapes floating around me just before the trembling happens.
As I said, this can be very scary but it is absolutely not life threatening or a dangerous condition. This can be a side effect of anxiety or stress. Worrying about it can make it happen more. The root cause is that the brain is on high alert for some reason and it senses danger. It wakes you up quickly as a caveman response to whatever threat. Your body lags a little bit behind the brain and pumps adrenaline into your system causing the vibrating feeling.
People who suffer from this fall into the same category as panic attackers. Panic attackers find themselves in an adrenaline loop. They experience an extremely weird bodily sensation and rationally think something is horribly wrong. when they find everything is medically cool they still naturally worry that the sensation will return.
Its the same with this sensation. If you worry about it, your brain will tag it as something to look out for as dangerous. Your senses will be on high alert even though you are inactive. when it happens you create, a brain loop that translates as- 1. go to sleep...2. wierd sensation...3. brain panics...4. brain tags it as something wrong because brain wants to protect you...5. brain wakes you up faster then body can wake up...6. repeat process
The only way to get rid of it, if your a constant sufferer is to complety ignore all thoughts, feelings, speculations about it itself. when it happens, let it ride its course and accept it. try to have a good attitude before going to sleep about it, no matter how distressing the sensations are.
What your are doing is retraining the brain to understand that there is no danger when you are asleep, and there is no need for the fight or flight response. The bad news is that it can take a long time for this process to unfold. sometimes you cant teach an old new tricks.
I used to have this sensation every night for years. I did tons of research and educated myself on what was actually happening. I didn't fear it anymore and it went away on its own. So don't worry, there is nothing wrong with you.
I've gone through this entire thread. It's been quite a long road for you. My symptoms are identical. I wonder, Bobito, if you're still doing well and taking the Elavil. I'd love to hear how you're doing 1 year after your last post.
Hello, I have read this entire thread also and I'm wondering how everyone is doing? I've been suffering with this inner vibration/ tremor while falling asleep or getting woke up suddenly for years off and on but it seems to be very bad right now. I'd love to hear how you're doing Bobito and anyone else, it's comforting to hear other's stories!
I got your email asking how everyone is doing. Unfortunately for me, my hair is falling out since I last posted to this thread. I had a hair analysis done last July that indicated I have possible low thyroid and low adrenal function, which I have never been aware of before. The hair analysis showed I had high sodium and potassium levels, but a low sodium to potassium ratio. (I hardly use any salt or potassium). Mind you, my blood tests at the doctor's office were all normal except for the first time my TSH came in slightly high.
My TSH (thyroid) was 4.85. That is border line, but my endocrinologist decided to let me try 30 mg of Armour Thyroid medication, which I just started a week ago.
About a year ago is when I started noticing my hair was changing texture and falling out! Since then I have been doing a detox routine with a green drink as well as a fiber drink twice a day plus avoiding sugar as much as possible. My tremors have been quite mild, which led me to think I was getting better but, yet, the hair loss has not improved.
I found a fantastic website at www.arltma.com that I feel explains what might be happening to all of us. I have been treated for yeast in my digestive tract in the past along with taking Fosmax for low bone density. Other than that, I have been quite healthy until all this started happening. The website has helped me understand how I could possibly have the beginning stages of osteoporosis when I have drank milk most of my life.
Afraid I do not have much to offer in the way of help at this time. Just may have to try the Elavil. My mom was on Elavil for years, but the doctors took her off of it when she started falling. Supposedly, it can make you a little lightheaded when you first get up to walk. She had an irregular heart rhythm, which the doctor said may or may not have been from the Elavil, but that the Elavil could make it worse for her. Just glad it has worked so well for Bobito.
Would love to hear how you and others are doing. This is a long thread, but it has been a life saver to know we are not alone.
I've tried the Amitryptilene (10 - 20mg). Although it certainly helps me get to sleep, it doesn't keep me asleep and I still wake up with the vibrations. Athough they *might* be slightly less intense than they had been. I'm guessing that folks like Bobito and dwc589 may be over this since they haven't posted for a while. That tends to be the pattern in forums like this. People get better and get on with their lives which is just fine.
It is good to hear about your results. I didn't mention in my earlier email that my hair analysis also showed low levels of Cadmium.
I am checking with my neurologist today. From what I have read, unless they do a blood test right at the time of exposure, it will not show up in the usual blood test.
Cadmium and other heavy metals get deposited right away into the tissues. That is why a hair analysis is supposedly a better indicator of toxic metal exposure rather than the blood test, which is all the medical doctors want to do..
From there, Cadmium causes the kidneys to retain sodium, which would help explain maybe why my hair analysis shows my sodium levels are so high, Could this be causing the excess excitement to the nerves, and why is it mostly when I am asleep? Cadmium also interferes with zinc metabolism and causes hair loss. Before I panic, though, I want to see what the neurologist thinks.
Yes, I believe you are right as far as not hearing any more from Bobito and dwc589, When things are going well, we have a tendency not to keep posting. Hopefully, they will eventually let us know how they are both doing.
In the meantime, thanks for your input.
I understand everything here because I have experienced nocturnal tremors for 7 years. I have gone to many doctors with little help. It seems to get worse when my thyroid levels are off. They only discovered an endocrine problem 3 years ago. It has been a very difficult experience. I would also love to know if anyone has determined a root cause or some diagnostic tests that will help heal this affliction. Thanks
What were your thyroid numbers? I just had some thyroid tests done. My TSH was 0.89 which is lower than usual for me (usually around 1.5), but still within the normal range. My T3 and T4 were also on the low side (I have no baseline for that), but still within normal range.
I have been suffering with this same thing for about 8 Months. It started with dizzy spells during the day, then I found myself waking up dizzy at night. I thought it was an O2 issue and went to the doctor. I did notice that during the visit to the ER my O2 kept dropping down to 90% at rest. When moving around it went back to 98%. This sparked several tests and several visits to the Dr and Hospitals. I would have never known about this because no one else seems to care and says everyone’s oxygen is different.
The tests that I have had that were all negative:
CT of lungs and brain
X-rays of abdomen and heart
Several types of blood tests
Thyroid, Sugars, and all the norms
I wore a halter monitor that showed that I have a small form of bradicardia that the cardiologist was not concerned about.
I basically exhausted the University of Chicago hospital. They told me that we have tested you on everything we could think of, we cannot figure out why you are having these symptoms have a nice life...
A friend of mine turned me onto a homeopathic dr.
I have had these tests that have all come back poor..
This DR feels that my vitamin D deficiency which is 32 is causing problems with my adrenal gland, in turn causing my thyroid to act up.
I am on a vitamin D regiment, Gluten Free diet for a trial, and a pro-biotic pill. I have been on this for a couple months and still have issues.
I had been under tremendous amounts of stress just a few weeks before all of the symptoms started. Stress adversely attacks your Adrenal functions. I read symptoms to adrenal issues most of them line up. Especially the issues in the middle of the night. If your problems are the same you probably are able to go right to sleep and problems start about 3-4 in the morning. Then you are screwed for the rest of the night and fatigued the rest of the day..
I have learned to live with the trembling, now I have sporadic tinnitus. 3 days on 2 off. Tremors get better and worse but never go away.
I bought a pulse ox recorder off of ebay for 100 bucks. I can see where my o2 drops to 92 % after 4 hours of sleep. It is consistent almost every night. My o2 is normal otherwise. The doctor says it is not related. My pulse also slows to low 50s while sleeping at about the same time. Sometimes hits 48 49. Doc says it is ok. I am 44 and 50 lbs overweight. I don't know why pulse is so low.
I am losing faith that the vitamin d level is related. I am in same if not worse condition. Tremors now moving to chest and arms and feeling jumpy in day on a bad night. I asked for referral to Mayo Clinic. I need to know so I can live right again. I never feel well and sometimes feel sick. Seems like there is no answer.
I will try Elavil if they let me. I wish I new a doctor.
This sounds *very* similar to my experience. The difference is that I was diagnosed with severe obstructive sleep apnea (OSA) years ago. But even at that time (when I weighed a lot more than I do now), my sleep was not as bad as it currently is and I didn't have the vibrations. Have you done a sleep study (polysomnography)? Most doctors I see insist that it's a psychological issue and want to prescribe various psych drugs. I was dependent on clonazepam for a while and I just don't want to go that route again. Besides I, of course, don't agree that it's psychological although I think the real bad sleep problems did start around the time I was having some significant work stress.
I just started seeing a holistic MD who has a reputation for digging a bit deeper to find the cause of health problems as opposed to most MDs today who just want to medicate and paper over the problems. He's also an expert in environmental medicine and will be doing extensive allergy testing. He's also a "lyme literate MD" and has ordered the more sensitive Lyme tests that most MDs don't do. I also have an appointment with the chief of Neurology at Lahey Clinic in Mass (near where I live) in February. He's also supposed to be one of the top sleep experts in the country. My GP's practice is part of Lahey Clinic and I haven't made much progress with them so far, but maybe this will be different.
Anyway, I'd really appreciate it if you'd keep in touch as to your progress. Especially if you make and headway with the Mayo clinic. I will do the same.
I don't know whether I posted this earlier. I also tried amitryptilene (10 mg) and it did help my sleep a bit, but only a little. I still woke up multiple times throughout the night. My impression was that it reduced the severity of the vibrations. Or maybe it just made me able to deal with them a bit better. For a little while, they actually went away although I still woke up multiple times a night. But then the vibrations came back after a week or so.
I'm also taking vitamin D (5,000 IUs/day) although I haven't had my vit D levels measured lately. How much are you taking? I've read that vit D can reduce magnesium levels and so I also take at least 400mg magnesium glycinate/day. You might want to ask your ND about this.
Please do keep in touch. I think the only way we're going to get to the bottom of this is by comparing notes.
Hope you're doing well and are still monitoring this thread. I was wondering whether you've had additional thyroid testing done. This whole area has become controversial. From what I understand, many feel that the high-end of the TSH range should be lowered to something like 3. So your number already sounds hypothyroid. I've also read that to get the complete thyroid picture, you need to measure free t3/t4, and reverse t3. Did you have those tests done? What were the numbers?
I will definitely stay active. I wish there was a place we could hold a meeting and get everyone together. There has got to be a connection. After reviewing everyones comments, it is starting to get discouraging.
I honestly feel like the O2 sat level may be a connection. This one has a strip chart display on my laptop. There is clearly a drop in O2 and heart rate at 3-4am. every night.
I would love to send it to you to check it out if desired. It is a fingertip device that downloads USB. It would be nice to scratch it off the list. I have been diagnosed with severe apnea. I don't thing it is apnea as I do not snore. I sleep on my stomach or side only. Tremors are lighter when on stomach.
I cut and pasted my comments off another blog that went silent. I was on 10,000 IAs/day. I recently stopped as my tinnitus is bad and this started after vit d. I was also feeling jumpy during the day. Maybe this was too much. I was not retested after initial.
Thanks for responding so quickly Toby. I think I have the same PulseOx device you have and I've used it a few times and studied the recordings. For me, I think they were inconclusive. My O2 sat could also drop to around 92 at various points during the night with my pulse rate going up, but I started out around 95 so that's not that big a drop. And your pulse can rise and fall quite a bit just by getting into an active dream Are you aware of whether you've been dreaming when you have these events?
The whole Vit D level thing is controversial right now as is the interpretation of Thyroid levels. 32 is still considered to be in the "normal" range by most traditional medical practitioners. However there's increasing evidence that optimal Vit D levels are really between 60-80 and that low Vit D levels can affect sleep. Here are some links if you want to read more:
http://drgominak.com/vitamin-d-3/ and http://drgominak.com/videos/
I suppose it's entirely possible that10,000 IUs/day is too much for you. Interestingly, I started having mild tinnitus a couple of months ago so I wonder if there's a connection there. I've been meaning to have my Vit D levels checked too so that might be informative. This is one of those cases where you really have to listen to your body. So I'd be interested in knowing whether stopping the Vit D supplements helps you at all.
As to the vibrations themselves, you've probably done the same googling I have and have learned that this can result from various conditions that affect your central nervous system. In my case, I had a really bad reaction to an antibiotic called Cipro last year. This is known to cause long-lasting CNS problems in some people. I also weaned myself off of a benzodiazepine called clonazepam about 9 months ago. I frequent an online group for people who have had adverse reactions to these types of antibiotics and a forum for people recovering from benzodiazepine addiction. Lots of people in both of these groups describe having these "inner vibrations" and insomnia. And if it's any consolation to you, there are many posts from people who say the vibrations eventually go away.
Thanks for your message. No, I have not had these other thyroid tests done, but I will ask for them the next time I go to see my doctor in another month or so. I, too, have read and heard about these more in-depth tests and definitely want to find out my levels.
My last thyroid was done 14 Nov 2013 after being on 100 mcg of Synthyroid for a month. My TSH came in low at .02 (.45-4.67), my total T3 was 123 (normal 58-159) and total T4 was 9 (normal 5.1-14.1). I honestly think if they had started treating my low thyroid a year ago when my TSH came in at 3.09, I may not have experience so much hair loss.
I will be eligible for Medicare in March and am hoping I can have all these tests done at that time, which hopefully will save me a lot of the expense.
In the meantime, my homeopathic doctor wants me on 2,000 iu Vit D and I just started this week with the coffee enemas he wants me doing daily. This is supposed to help stimulate the liver to cleanse itself of anything toxic. I have done 3 so far and today I am feeling like I am doing a little better.
Hopefully, if any of this is a reaction to antibiotics or other meds, it will help the liver to detox. I am also on no sugar diet with very little fruit.
It is wonderful to hear from you and everyone that has posted recently. I will keep you posted just as soon as I have any new results and hopefully everyone will do the same.
Sounds good toby. Are you starting at 10mg? I had tried 20mg and found that this increased the side effects (dry mouth, constipation), but didn't really reduce the vibrations or increase sleep more than 10mg. So I stayed at 10mg.
I'll be very interested to here what happens with the Mayo Clinic. How does one actually go about this? Do you have to get a referral from your doc or do you just call them up and say you'd like to be seen?
You need referral to get strait in, but have the option to wait in line to be seen at clinic. It takes three to four days I have heard. Sat and Sun don't count.
I started with 20 mg first night since having 10 mg pills. I slept good but still had sensation of tremors. They were somewhat deadened and were easy to return to sleep with. I have been groggy and dry mouth all day.
I will see if Mayo has a two for one special! Haha.
That was my experience as well. At 10mg, I still had the tremors, but they seemed lessened and didn't keep me up as long. 20 mg was too much for me. From what I understand, it's possible that the next-day grogginess goes away after you've used it for a while (something like a week). I haven't used it consistently enough to test that out though.
Wow, you literally have to get in line for days at the Mayo if you don't have a referral? Sounds kind of third-world.
Just wanted to add that I, too, will be anxiously waiting to hear how everything goes for you at Mayo. Are you also going to have them test for Lyme's? My test was negative, but I believe they have to do a more thorough test to be sure and I haven't had that done yet.
Thank you for sharing all you are doing. Hopefully, we can find out something that will be helpful, especially in getting a good night's sleep.
I will run the Lyme tests past them. I do get into the woods quite a bit.
I wanted to add. I have been taking 10mg of Elavil for over a week. I still have the tremors but can easily sleep through them. It took a few days to get used to the side effects. I have tollerable dry mouth is all at this point. It is worth it. 20mg was too much. It is like a pain pill on a tooth ache. Pain is still present, but manageable.
Interesting that Elavil helps this. I've done some reading and low-dose Elavil is used to treat lots of things such as pain management. No one quite knows why it works on some conditions. Here's some other information to add to the puzzle. I've had some detailed allergy panels done over the last couple of weeks. I still have two more panels to go, but I've found out that I'm allergic to quite of few things: dust, certain molds, and certain foods that I've eaten all my life. And I may have a gluten intolerance. Allergies produce a histamine reaction and Elavil is a histamine blocker. So I wonder if some sort of allergic reaction could be at the root of this? Allergies are typically the last thing that traditional doctors check for when presented with mysterious symptoms. On the other hand, I suppose the vibrations could just be some sort of nervous condition on which a low-dose anti-depressant is effective.
Here are some other questions just to see if we can find any common threads:
1. I had a really bad reaction to a fluoroquinolone antibiotic called Cipro about a year ago. These antibiotics are known to have long-term nervous system effects in some people. Have any of you taken a course of these antibiotics with the last year or so?
2. I had been on clonazepam for a while (ironically, for sleep problems). Many people who are weaning/have weaned off benzodiazepines complain of the sleep vibrations. Have any of you taken benzodiazepines?
Another piece of information related to my histamine theory. I tried a Zyrtec the other night and it also seemed to reduce my vibrations. Not quite as much as the amitryptilene, but that's not surprising. I've done some additional reading about stress, leaky gut, etc. These can combine to produce various weird symptoms including environmental sensitivities. Some of what I read also mentioned "vibrating sensations." Environmental sensitivities are not always well understood by your average doctor. I happen to have found one who specializes in that so I'm going to ask him about all of this on Thursday. It also turns out the lack of sleep itself can contribute to this so it sounds like a vicious cycle.
I had to stay off of the amitryptilene while I was doing allergy testing, but now I'm going to try it again.
Anyway, just some additional thoughts. I'll also find out on Thursday whether this doctor thinks I have Lyme.
I am currently on day 3. I have some time to kill while preparing for a sleep study. A neurologist is wanting to analize brain waves to identify if it is a nerve or seisure type vibration.
So far i have high iron levels and low blood platelets. GI Dr tomorrow for that. I also have a slightly abnormal audio acoustic reflex. Ear and throat Dr said not an issue. May request MRI if neuro wants.
Dr said he has seen something simular in a patient. Kind of described it as a nerve issue that you treat with a drug simular to Amitryptilene until it passes. Something I did not want to hear. I want to find root cause.
This place is amazing. You literly leave the Dr and go to a test, get results in an hour, and go back to Dr for explanation. I have done more here in 3 days than 10 months in Chicago. Sorry, i am used to spell checker! Ha
I saw the holistic MD yesterday. Based on my test results he says that I was definitely exposed to Lyme at some point, but that doesn't necessarily mean I have an active infection now. Some immune system tests also showed that I had a reduced immune response. Over the last 2 weeks, I started having some GI problems (bloating, pain, etc.). They started off pretty severe, but have now settled down to some mild stomach upset and gurgling. I probably wouldn't give this a second thought if it were not for my other symptoms. Over the last 3 days I've experienced some cardiac arrhythmias that seem to happen only when I'm lying down. Anyway, because of the GI issues, the holistic MD wants to hold off on any potential Lyme treatment pending tests for SIBO and yeast overgrowth (Candida). I'll be seeing him again in a month.
I told my GP about this and forwarded the latest test results via email and I was surprised to find that he was a bit ticked off. Lyme disease and its treatment is a very controversial area. Reading between the lines of my GP's response I think he was telling me that if I choose to be treated by the holistic MD (probably with antibiotics), I'm on my own. So now I think I may have to find a new GP. Very depressing...
Hope your sleep study went well and turns out to be illuminating.
Just wanted to let you know I got the results back on my more extensive thyroid checkup, which I had to ask for...the doctor did not order these.
My Free T4 - 1.54 ng/dL (normal 0.71-1.85)
My Free T3 - 3.2 pg/mL (normal 2.4 - 4.2)
My Reverse T3 27.8 ng/dL (normal 9.0 to 27.0) so this is High
I am also interested in finding out what is happening with my adrenal glands. I have been taking 100 mcg Synthroid since last October, but I want to switch to Westhroid or NatureThroid and my doctor doesn't want to cooperate. I will keep tryiing, however.
How are your GI problems, b1218? I hope you are doing better. Do you remember being bitten by any ticks? I did about a month before I started with all this. I got bitten while on vacation in the Idaho mountains on 20 Jul 2011 and on 7 Sep 2011 I had my first attack with this nerve condition.
SO glad to get the reports from Toby1101 from Mayo Clinic. I am keeping my fingers crossed they will be able to find the problem and a solution for it.
Thanks for posting ieagen. Are you seeing an endocrinologist about your thyroid issues? The reverse T3 works to inhibit T3 which is the main thyroid hormone. So I think that could cause you to be hypothyroid even if the rest of your thyroid numbers are OK. Off the top of my head, I don't remember whether Synthroid is the correct treatment for this. But, there's lots of information on the web about this. Have you been to the "Stop the Thyroid Madness" site? I also found these articles interesting:
Why are you looking to switch from Synthroid and what are your doctor's reasons for not doing so?
My GI problems having gotten better. I've been on an anti-candida diet for a bit more than a week now in case a yeast overgrowth is part of my problem. My tummy is definitely very rumbly after eating, but it's no where near the pain and bloating I had when this started. I'll have to wait for the results of the SIBO and candida tests to know more.
I have woodsy areas around my house where we've definitely had deer. I work in the garden a lot and I've gotten many bug bites over the years. I don't remember being bitten by a tic specifically or getting the bullseye rash. Many people with Lyme never get that rash. So I'm going to have to give some careful thought about whether I want to be treated for Lyme which will probably mean long-term antibiotics.
In other news, I saw the Chief of Neurology at Lahey Medical (in MA) on Friday. He's also supposedly one of the country's leading experts on sleep. He was an incredibly nice guy and I met with him for about 40 minutes describing my various issues. When I mentioned the bit about the vibrations, his eyes lit up a bit and he was clearly familiar with this symptom. Unfortunately, he said "You know, when I hear that particular symptom, I immediately think of anxiety as being the root cause." That was discouraging. On the other hand, he seemed very receptive to ordering another sleep study. One reason was that my last two sleep studies were contradictory. One said that I had severe obstructive sleep apnea. The later one said that I had almost no sleep apnea. I had lost a bunch of weight between those two studies and according to him, that could account for it. Regardless, he did a great job of listening and didn't outright dismiss this as "just anxiety." The big issue is that insurance might not pay for this latest sleep study. They're starting to push back in general about on-site sleep studies. And since I've already had two of them... I told him that I'd pay for it myself if I have to. I'm not thrilled with that idea since we're talking about $3,000+, but that's how serious I am about getting to the bottom of this. And even if we don't figure out exactly what's causing this, maybe we can rule things like central sleep apnea out.
I got home Friday from Mayo. My sleep study was a fail. I never had an episode so it was not recorded. They had extra sensors tied to my head to try to determine what areas the issues were developing from. This was discouraging as this was going to be a great help.
Here is what the doctor said.
#1 Indeterminate spells
#2 Obstructive sleep apnea
I met back with Mr. Blankenship to discuss results of his polysomnography, which is summarized separately. The study was done for two reasons, first and chiefly to explore his unusual nocturnal spells of somatosensory symptoms, which on clinical grounds would be most consistent with a hypnagogic somatosensory phenomena. What is somewhat unusual for that diagnosis is the prolonged duration of many of the symptoms, which are also of a peculiar dysesthetic quality. In any evident, there is no evidence for an organic primary sleep disorder to provoke the symptoms. On practical grounds, it would be sensible to continue to offer him symptomatic therapy, and he has benefited from amitriptyline thus far, started by his primary physician. I discussed with the patient that further titration of amitriptyline could first be attempted under the supervision of his primary physician, and if that is ultimately ineffective or still producing suboptimal results, a therapeutic trial of gabapentin could be offered in the same fashion. Dose ranges for amitriptyline typically effective for relief for dysesthetic type symptoms would be broadly in the 10 to 100 mg nightly range. When he started too high at first, he encouraged some side effects, so titrating by 10 mg increments would be reasonable, probably every two to four weeks, with a goal dose in the broad 50 to 100 mg nightly range. The lowest effective dose should be used. If adverse effects, such as dry mouth, constipation, dizziness, or carryover sedation in the morning results, the dose should be lowered as appropriate to eliminate such effects. Gabapentin could be used in an analogous fashion, starting with doses between 100 and 300 mg at night, and titrating by 100 to 300 mg increments as needed and tolerated, to achieve doses in the 1200 to 1800 mg nightly range. If he benefits from this but needs higher doses, he could be switched from gabapentin to pregabalin (Lyrica), dosing between 50 mg and 300 mg q.h.s. as needed and tolerated, titrating by 25 to 50 mg increments every two to four weeks as needed. Similarly, prescription Zolpidem or eszopiclone (Lunesta) could also be offered if disturbance maintenance insomnia symptoms continue. A helpful approach instead would be to try behavioral measures for psychophysiologic insomnia, including avoidance of watching the clock, getting up out of bed and avoidance of lying sleepless in bed for more than 15 to 20 minute intervals, going out to the living room to pursue quiet, distracting activities, such as reading or television watching, and avoiding work or daytime type activities, such as computer work or work-related tasks. Cognitive behavioral therapy and relaxation therapy measures could also be applied.
The patient appears adequately treated at his current prescribed nasal CPAP pressure. He did well with adjustments of nasal CPAP in the range of 10 to 11 cm.
Last, unfortunately, no seizures or spells were recorded during the polysomnogram, so while their nature remains uncertain, the empirical approach outlined above could be helpful to the patient for symptom control. I reassured him there is no evidence for a primary sleep disorder, such as a parasomnia, or for nocturnal epilepsy, given the absence of interictal epileptiform discharges throughout the night. Obviously, the absence of such evidence does not absolutely preclude the possibility of nocturnal epilepsy, so if the patient's disturbing spells continue, he could be considered for referral to the Epilepsy Clinic and prolonged video EEG monitoring, or at very least should have a thorough neurological examination and consultation. However, I suspect this will be unnecessary with reassurance and the empirical approach outlined above.
We have not scheduled additional follow-up in the Sleep Clinic at this time. If additional advice is sought from a sleep medicine perspective, he could certainly be referred back to us.
I also have possibly unrelated issues with my liver. I am waiting for results from Friday. Dr thinks fatty liver disease. I need to lose a few pounds and check back in 6 months.
Apparently 10 mg of Amitriptalyne is the smallest dosage you can take. You have to slowly ramp up this med and let your body get antiquated with the side affects.
He assured me that in the other patients he had seen with similar issues fully recovered and go off meds less than a year. He thinks possibly I am experiencing an issue where I become physically conscience when half my brain is still unconscience. By seeing results from meds he may be able to determine more.
Thanks for that very complete report, Toby. I might show it either to my GP or Neurologist to see what they think. Especially since my neurologist said some of the same things with respect to trying sleep restriction therapy and CBT. The drugs he's talking about are a little scary to me especially after my experience with Clonazepam, but if it works... I'm sorry that it didn't uncover anything definitive.
I also had fatty liver disease. I was way overweight a few years ago. I'm 5' 6" and weighed 197. My liver enzymes became elevated at some point (I assume that's what your doctor saw) and fatty liver disease was confirmed by ultrasound and MRI. I saw a liver specialist who told me to stop drinking (FLD puts you at higher risk of serocis) and lose 20 lbs. I did both of those things and my liver enzymes normalized. I now weigh 154 and my liver enzymes continue to look good. One piece of advice, don't just go on a diet and lose weight. See a nutritionist to help change your dietary habits. I didn't do that initially and after I lost the weight, my liver numbers started creeping up again. I realized the cause was that I was eating less, but not healthy. I started eating all kinds of "low-fat", "low-calorie" food including diet sodas in order to keep the weight off. Those things (and anything with artificial sweeteners) are poison. Just my 2 cents.
Please continue to let us know how you're doing and I'll do the same.
Thank you for all the references. I am familiar with the stop the thyroid madness website and I also use Dr. David Brownstein's website.
Dr. Brownstein highly recommends the natural thyroid, "Westthroid or Naturethroid", over Synthroid. Synthroid supplies only T4 while the natural thyroid meds not only supply T4, but T3, T2, & T1 as well and supposedly they are better when your Reverse T3 is too high. I am sure mine is too high because of the Synthroid. I possibly have a problem converting the T4 to T3 and need additional T3 in my meds.
The typical medical doctors prefer Synthroid supposedly because it is supposedly more consistent than the natural medications. However, Dr. Brownstein has found just the opposite and found that Synthroid has more issues with being consistent, so who knows. My family doctor said the Westhroid and Naturethroid aren't even in his PDR [prescription drug record?] and he doesn't feel comfortable prescribing something with which he is not familiar.
I will need to have my regular blood work done to renew my prescription this month, so I am going to try again to convince him to switch me then. If not, I will need to find another doctor who will prescribe the natural meds.
I am so sorry to learn the sleep study failed for toby1101. My neurologist also recommended gabapentin, but I did not want to start a prescription at that time. My tremors have been much more mild since I went on an anti-candida diet.
I usually go to bed around 11:30 pm and on a good night I will wake up around 7:00 am. I try not to nap during the day as it makes it harder for me to fall asleep and stay asleep that night.
Supposedly my liver enzymes are within the normal range.
Thank you, both, for keeping me posted. I will let you know if I do get my meds switched and if that helps with anything. Please continue!!!
How long have you been an the anti-candida diet? I came to the conclusion that my problems (I have a number of other health issues in addition to the vibrations) might be candida-related. I had a very bad reaction to a very strong antibiotic last year which is when many of my symptoms started. Were you ever tested for candida? The holistic MD I'm seeing had me do a poop test. Haven't gotten the results back from that yet. Regardless, I started on a candida diet a couple of weeks ago when my GI problems flared up for a couple of days. To soon to tell whether it's working or not.
Sorry for not responding sooner. For some reason, I am not getting any email notifications.
I started my anti-candida diet about 6 months ago. Years earlier, I was referred to the only medical doctor in this area who would take candida seriously.
At that time he did a blood test which checked for the antibodies against the yeast. Mine came in quite high and I was put on a prescription for 1 1/2 years. However, I got very frustrated after about 4 months as I would improve for a while and then my blood test would come back high again. I also lost weight which I could not afford to do. I went below 100 lbs. even though I was eating what I thought was a ton for me.
The doctor agreed with me when I told him I was going to have to quit the prescription medication and that I would just use herbal treatments to try and control it.
After awhile of doing that, I went to a different doctor. He checked for yeast with a stool analysis and found I was clear of yeast. Apparently the prescription had helped and maybe the blood did not have time to clear itself of the antibodies against the yeast, yet (I am just guessing). Also while I was on the prescription, I was having to go in each month and have my liver checked.
Because I needed to gain back the weight I had lost, I decided to go back eating the way I used to and just use the herbal treatments to try and deal with the yeast. I did fine for several years until 7 Sep 2011 when I had my first nerve vibration which was located at the top of my right leg in the groin area. It was on 20 Jul 2011 I got a tick bite on my right thigh. No rash, no symptoms whatsoever for any Lymes disease, except this nerve tingling, vibrating sensation.
About January 2012, I decided to cut sugar from my diet and the nerve tingling subsided and I thought I was cured. Then February 2012 I got woke up in the early morning with the vibration now in my spine somewhere. I have learned all I have to do now is touch my neck or spine and the vibration will stop. However, it has been happening every night since then. That first night was the worst, but it has subsided and is much more tolerable now.
I am back seeing the original medical doctor I went to years ago and am back on the anti-yeast medication. I have been on it now for 4 months and so far am holding my weight and hoping I can do so for the 1 1/2 years he wants me on it. I am also following the diet very closely.
It makes me really wonder if there isn't a connection with thyroid problems and all this yeast. At any rate, this is a long post to your question, but I think you are on the right track. The theory is candida is so high today due to too many antibiotics being prescribed over the years.
As you mentioned, treatment for Lymes is very controversial. In my opinion, if one has to go on long-term antibiotics for Lymes, they should be on an anti-candida prescription as well at the same time. My blood test for Lymes done in October 2012 came back negative. However, I understand if not caught very quickly, it can become very difficult to diagnose.
Toby1101, did Mayo Clinic do any in-depth tests for Lymes? Candida and Lymes are both very high on my list as possibilities for contributing to these symptoms.
My diet consists now of mostly cooked vegetables, protein and extra fat, such as olive oil, to keep from losing weight. I am quite sure your digestive problems will improve as you stay on the anti-yeast diet. I try not to eat very many carbohydrates or anything with wheat or gluten or that has been fermented.
Keep me posted what you find out when your results come back. I will do the same when I go in for my next thyroid checkup.
Well, my sleep study is scheduled for this Wednesday. Wish me luck. I'm currently wearing a Holter monitor because I started having some arrythmias mostly when lying down. Had quite a few last night, so I'd be surprised if the monitor didn't pick them up. I also had some blood tests done yesterday including a full thyroid panel so that should be interesting.
Sorry to learn about your arrhythmias. Not sure if this applies, but if you are low on calcium, that can also cause your heart to beat out of rhythm. I am eating a lot of steamed collards to get my calcium in addition to yogurt, etc.
I am really keeping my fingers crossed for your sleep study. No one seems to have had a successful sleep study so far with this condition. I am really hoping yours will be able to catch what is happening.
Glad to hear you had a full thyroid panel done. I will call my doctor's office again on Monday to see if they are willing to prescribe the Nature Throid. If not, then I will have to find another doctor who will. I gave them the phone no. for the Nature Throid lab so hopefully, they called them and I can get started on it right away. My reverse T3 is too high and supposedly it is from being on the T4 only prescription (Synthroid).
Hang in there!!! We will be waiting to hear back from you.
No, I won't be seeing the doctor to get my candida results until 3/19. I'll report back then. BTW, I found another excellent write-up on thyroid function at this site recently: http://nahypothyroidism.org.
Mayo did not test for lyme. They claimed i would have other issues than just at night. I am still on a small dosage of Amatriptalyne. It is working well. I am now sleeping full nights and getting stronger. My thyroid was normal. I have cut tons of sugars too. Trying to drop lbs.
Did you get a copy of your thyroid results? They kept telling me my thyroid was normal when my TSH came in at 3.05 over a year ago. Now most of the integrated medical doctors are saying a TSH reading over 2 should be treated. They waited until might got to 4.85 before they put me on the lowest dose possible.
So glad the amitripyline is helping. Are you going to stay on that or try the gabapentin?
My TSH is 2.5. My T3-T4 were at the low end.
I have an update on Mayo. My ferritan level was way high. I have iron overload. Diagnosis below. Reading about iron overload it may be my issue. I need to donate some blood to get iron levels down and see.
Iron overload messes with thyroid and adrenal glands. Also can cause issues with nerves. Hmm
HFE: C282Y: Homozygous. Two copies of the C282Y mutation. H63D: Not detected. This result confirms the diagnosis of or predisposition for hereditary hemochromatosis (HH).
Dr. DE GROEN (GI)
Start phlebotomies every week or every other week. Goal: iron sat <50; ferritin <50. Measure those after 8 and 16 phlebotomies. Before each phlebotomy measure Hb. If <11 skip a session. Once down, 4-6 maintenance per year. Close follow up with local providers recommended.
Oh yeah, that'd do it. I tested negative for both HH gene mutations a while back. That was the first thing they tested for when my ferritin started climbing. My iron numbers aside from ferritin were also OK. Well, it's great that you got that diagnosis and the treatment is easy although you do have to keep close tabs on your iron levels.
Well, my sleep study was a bust. I was barely able to get to sleep at all. I'm just to light a sleeper now and heard every noise outside my room. So I don't think this is going to shed any light on my condition. Really upset...
I know that would be my problem as well. The same thing happened years ago when my dad did his sleep study. Wish they could set it up so you could do it in your own home and in your own bed.
Your thyroid results as far as your FT3/RT3 ratio look great. If you have a previous thyroid test, you could see what direction it might be going in. I don't think you will want your TSH to drop any lower, however. My TSH kept climbing higher and higher each time.
Toby's TSH of 2.5, according to Dr. David Brownstein, ought to be treated. However, it just might improve after his ferritin levels come down.
From what I am reading, ferritin levels and the adrenal glands both can affect the thyroid. I will have my ferritin checked the next time I go in to the doctor. I had a high level years ago and I may have brought it down too low even though I was supposedly in the normal range after doing a few blood donations.
Do either of you have any hair loss? That is my biggest concern right now.
Thanks so much for posting. I am really hoping we can get this figured out.
I have some hair loss, but nothing unusual for a 53 year-old male. In fact, I have less hair loss than most of the males in my family at this age. Yes, my FT3/RT3 ratio looks fine although both numbers are high. And my TSH is fine too except for the fact that it was pretty much rock steady 1.5-ish for years until it dropped to 0.8-ish recently. Both ferritin and thyroid hormones can be markers for some other inflammatory condition. I happen to be seeing an endocrinologist at the end of the month for a separate issue, so I'll ask him about all this.
In the meantime, I'm going to continue with the amitryptilene which at least allows me to get some sleep.
Glad to hear you are not experiencing a lot of excessive hair loss. Mine slowed down slightly after being on my thyroid medication but seems to be starting up again.
I am doing a detox for bio unavailable copper for yeast and will have to slow down a little as it may be contributing to the hair loss as well. I will be getting my ferritin level checked hopefully in June when I met with my endo dr.
Glad to know you are also able to get some sleep with the amitriptyline. Has your heart arrhythmia's slowed down any?
Arrythmias have lessened a little bit. Not sure why. The 48-hour holter monitor report just came back and I have "supraventricular ectopic hearbeats with periods of afib/aflutter." My GP wants me to start taking a daily aspirin and will consult with a cardiologist tomorrow to determine next steps.
I am 45 yo male. Same hair loss as you described. I see a blood dr on fri to start iron reg. my ferritin is 750. Norm is below 50. Mayo wants me to bring down to 11 and back off. My iron lev was fine too. I am hoping this has something to do with tremor issue. Amitriptyline is my friend.
My tremor issues are cyclic. Three good days with no tremors then two on. I also have tinnitus on a cyclic pattern as well. Not the same cycle though.
I am sleeping!
From my mother's experience with Amitriptyline, her cardiologist wanted her off of it since one of the supposed side effects is arrhythmias, which she was diagnosed as having.
Also it can cause the elderly to fall if they get up too suddenly. I guess that is why my neurologist preferred the Gabapentin over Amitriptyline. As usual, there are pros and cons to everything and the possible side effects of any drug are always scary.
Glad your heart monitor picked up what was happening and hope the cardiologist can help with all this. With Mom, they put her on blood pressure medicine to try and help with her arrhythmias.
Will be anxiously waiting to get the results on your yeast test.
I think the normal range for ferritin is a bit higher than that. From one lab, the range was 30-400. From another lab, the range was 16-287. So I'm surprised that in the absence of high iron numbers (including Iron, TIBC, Transferrin) they want to bring your ferritin level so low. But maybe that's because they expect it to rise again. My ferritin level is 500 and my doctor doesn't seem too concerned. Maybe I should see a blood specialist too.
I hadn't taken Amitryptiline for weeks at the time I started having arrythmias and since I started taking it again, I haven't had any. Go figure... Yes, they'll probably want to put me on a Beta-blocker or something as my BP is also a bit high. Hyperthyroidism can also cause arrythmias and insomnia. So if my thyroid numbers indicate hyperthyroid, that could be part of the puzzle.
I had my appointment with the cardiologist. The arrhythmias were infrequent enough and short-lived enough not to be a big concern. This was reinforced by the fact that I haven't had a reoccurrence in more than 5 days. The cause is still unknown. The cardiologist said that they can't always determine what causes this types of episodes. He also mentioned that they call these type of events "vagally mediated" meaning that the vagus nerve has something to do with stimulating the heart. Very interesting since these events seemed to occur just after some GI symptoms and vagus nerve is involved in a significant portion of the digestive tract. I found a whole other forum thread about vagus nerve/heart palpitations in which people were complaining of symptoms very similar to mine. Just like the sleep vibrations thing, doctors seem to be clueless about this phenomena. The cardiologist (who was really pretty terrific) gave me a prescription for a low-dose beta-blocker (Metropolol) to help with the palps should they reoccur. And he put me at ease by telling me that I don't have a heard condition other than the mild mitral valve prolapse I already knew about.
I'm wondering now whether the vagus nerve could be involved in my sleep problems, especially the vibrations. Unfortunately, for such a big important nerve very little seems to be known about it.
Other than that, my SIBO test came back negative. The results of the Candida test have not come back yet. My GI problems are much improved lately. I have an appointment with a Endocrinologist on Tuesday where I'll discuss my thyroid numbers.
I have a theory that reflux (whether silent or not) does affect the vagus nerve. Or at least what causes reflux can affect the vagus nerve. Strangely, it appears that very little is known about the vagus nerve given how important a nerve it is.
Keeping my fingers crossed for you. Wouldn't it be great if everything resolved after you lower your ferritin? Now I'm wondering if my ferritin level has anything to do with my problems. I don't have hemochromatosis, but who knows...
I know I for one am going to have my ferritin checked in June as well as my adrenal gland hormones. Will probably have to go to an alternative doctor for the adrenal gland check up. Hope toby1101 is feeling better even though it will probably take a little longer.
b1218 - have you received your candida yeast test results, yet?
Endo agreed that my thyroid numbers are tending towards hyperthyroid and has ordered a radioactive iodine uptake test and thyroid ultrasound. Those will happen next week and the week after. It irks me no end that if I had not ordered (and paid for) those thyroid tests myself, these tests would not be happening. Endo was still not concerned about my ferritin level since I tested negative for hemochromatosis. I won't be seeing the holistic MD until 4/9 for the results of my candida test.
I am just glad they finally caught this before it gets any worse; and yes, it is extremely frustrating the doctors don't check better for this.
You might want to read what Dr. David Brownstein has to say about an alternative way to treat hyperthyroidism. He is not too keen on the radioactive iodine and feels it should be used only as a last resort. I realize this is just a test at this point, but Dr. Brownstein's website is: www.drbrownstein.com if you should decide to check it out.
Did they check for thyroid antibodies in case it might be an autoimmune problem? You also might want to have the doctor check first for a Mycoplasma infection and see if you need Minocycline, an antibiotic, to treat it. Dr. Brownstein reports he has been able to treat successfully several of his hyperthroid patients so they did not have to rely on the radioactive iodine.
I still have a sneaky feeling yeast is at the bottom of a lot of this, even the ferritin level. I read in "Prescription for Nutritional Healing" that "excess zinc and iron should be avoided because zinc promotes growth of Candida and iron cannot be absorbed until the candidiasis is healed." I am just wondering since iron can't be absorbed, is it possibly stored as ferritin? Don't know if even the doctors know for sure. There could possibly be other causes of hemochromatosis than a possible gene.
I will be waiting to hear whatever you decide to do and praying we can all get the care we need. I am taking fluconazole 100mg once a day and the medical doctor, not an alternative doctor, wants me on it for another year. I have been on it now for almost 6 months and my tremors are much more mild. Don't know if it is the fluconazole or the thyroid medication or both, but I am doing better...not 100% but better.
Have they said what is taking your yeast test results so long?
I don't think the candida test is actually taking that long. For all I know, the test results are in now. It's just that this particular doctor doesn't like to give out/discuss test results over the phone and 4/9 is the next time I can get in to see him.
My GI issues are much improved of late so (assuming I ever did have candidiasis) maybe the candida diet and herbal remedies helped.
Sleep problems/vibrations haven't changed much.
I also wonder how much my ferritin level is playing into this. No doctor I've seen so far seems particularly concerned and I'm not sure why. High certainly doesn't seem to be a good thing even if I've tested negative for the hemochromatosis gene. And yes, I think there are other causes of hemochromatosis. I haven't gotten it straight through surfing the Web whether elevated ferritin (mine is about 500 now) itself is considered hemochromatosis by definition and whether it always warrants therapeutic phlebotomy or chelation. Toby (if you're still monitoring this thread), maybe you could ask your hematologist about this next time you see him/her.
The article I read years ago about ferritin levels came from the Oct 1995 Reader's Digest, entitled "Is Iron Making You Sick?" According to this article "men and postmenopausal women need to have their ferritin levels between 70 and 150." Apparently, they have linked high ferritin levels with higher risks for heart disease.
Candida test was negative. However, the mycology report showed "scant amounts" of some other fungus that even this holistic MD who specializes in this kind of stuff has never heard of. So he's going to research that while I do yet another more sensitive test. Any decision on treatment for Lyme is on hold pending the results of my thyroid testing which I'll get on 4/16. In the meantime, I'll just have to continue to deal with little sleep and lots of vibrations...
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