I swore i had central apnea as well. I bought an o2 sat and heart rate recorder. My o2 drops at night, but drs looked at chart and said it is not that low. Low o2 seemed to correlate with vibrations. Very confusing. Insurance covered most of Mayo. Their rates are no different than the others.
Thanks again Toby. I think one of the differences between your symptoms and mine (correct me if I'm wrong), is that when I wake up with the vibrations, I seem to be having a momentary anxiety attack which makes it feel even more like I wasn't breathing (or stopping breathing results in some anxiety). It passes quickly although it makes the wakenings even more distressing. And sometimes I'm almost aware of having gasped slightly just before I become conscious. Depending on how deeply you sleep, it might not take much of a cessation in breathing to wake you up and so your 02 wouldn't drop that much.
The problem is, I'm almost always in the middle of a dream when this happens. So I think this almost always occurs during REM sleep which is another reason I think it's central sleep apnea. Of course, the anxiety and the fact that I'm dreaming also leads some of my doctors to believe that it's "just anxiety."
When I was using my own pulse-oximeter, it was around 95 with drops to 91. And the drops didn't always correspond with my waking times. But again, CSA doesn't always result in significant 02 drops. Half the time, I feel like my problems are breathing-related and half the time not. I mean, any kind of anxiety reaction can make you feel like you were having trouble breathing.
What a bummer. Really, I was so hoping we were onto something. I am still planning on having my ferritin checked on 6 Jun. Because you managed to get some relief, I am still wondering if there isn't a connection between your thyroid and iron.
Still having issues. Cant help thinking this is not a blood flow issue. My heart rate drops to mid to upper forties in the middle of the night. Always about the same time my issue starts. The cardio said i am just healthy. I am mid forty n sit behind desk pushing 250. Not sure of his reasoning behind that. I guess i will head down that avenue. Getting discouraged. Vibrations now are radiating to hands. I seen that in earlier blogs.
I'm sorry to hear that toby. You must be very frustrated. I'm still having the vibrations. I decided to go ahead with being treated for Lyme even though my Lyme tests were just slightly positive. The antibiotics are doing a number on me which is not helping my sleep any. I've also seen another sleep neurologist to get a second opinion since I don't agree with the first one's conclusions. He is going to have me do an at-home sleep study first to test for sleep apnea and then we'll take it from there. My thyroid numbers completely turned around in my last tests to being on the low side of normal so I'm not sure what's going on there. I'll be getting another at least another TSH level done at my yearly physical in July. So unfortunately, I don't have anything new to report on the vibrations.
My vibrations are very mild now. I honestly think they began subsiding the minute I went on the anti-yeast diet...no sugar, fermented foods and very few carbs.
My diet is protein, sardines, very little fruit, but lots of steamed vegetables. Not the most exciting meals, but at least I am sleeping. As I mentioned before, I am on 100 mg Fluconozole for another year which is an anti-yeast medication. This particular doctor is the only one in this area that is knowledgeable on how to treat chronic yeast in the digestive tract. I do not have any other symptoms for yeast. Didn't even know I had it in my digestive tract.
-b are you taking some kind of probiotics while you are on such strong antibiotics for Lymes?
I have been periodically checking night O2 and heart rate for the past year. As my symptoms increase over time i am noticing my heart rate is getting lower after about 4 hours of sleep. I started at 52 bpm and now hitting 43 bpm when i am experiencing vibrations. Seems like i need to run this to ground. May still tie to lyme or thyroid as both cause bradycardia.
Thanks for the update toby. You know that you'll need to find a "Lyme Literate MD" to really be tested and/or treated for Lyme right? What part of the country do you live in?
I had an endoscopy yesterday because I was having some reflux issues and my voice was getting hoarse. Everything was normal except that they found that I had a "minor" hiatal hernia. Don't know if that could have anything to do with the vibrations (I didn't even bother asking the gastroenterologist), but just reporting it for the record. They really don't do anything to treat small hiatal hernias except to treat any symptoms such as reflux with acid blockers.
Interesting about your acid reflux. I, too, went in last year for the same reason...my voice was getting hoarse. Apparently, I have slient reflux since I have never experienced any heartburn ever. No hiatal hernia, however. I try to keep myself propped up at night with an extra pillow.This all happened before they diagnosed my thyroid problem. don't want to take acid reducers unless it becomes absolutely necessary. I am doing better with not being as hoarse.
Speaking of thyroid...the endo reduced my synthroid from 100 mcg to 88 mcg daily. I talked him into switching me on to Armour, which he did, at 60 mg. I am supposed to try this for a couple of months and then come back in for testing. I wanted Naturethyroid, but because he wasn't familiar with it, he would not try it.
How are you doing with your treatment for Lyme's? Hope Toby is surviving. It is interesting to me that all my troubles with this nerve vibration stared after I got a tick bite back in July 2011.
The saga continues. Long story short, I saw a neuro Fri. She is positive my issue is my gas exchange is too low while sleeping. I had a CO2 blood test and MRI on brain. She said that when i am getting into REM sleep my breathing is too shallow trapping CO2 in portions of my lungs.
I am so exhausted trying to figure this out. But, try this. When you have tremors stay relaxed for a while and see if they are constant. If you do nothing else but take deeper breaths, you will notice the symptom goes away. This may be why people are having the same issue with different problems. Lyme will slow your stuff.
I am an Engineer, i fix things thats what i do. I will find the answer. Possibly getting close. Try a cpl deep breaths and see if symptom goes away for a little while. Hmmmm.
That's a good theory. Is your neuros opinion based on the results of your CO2 blood test and MRI? What did they show?
Deep breathing is one of the things I do to make the vibrations go away. Then they come right back again when I drift off. But that also reinforces my GP's opinion that this is anxiety-related (which I don't believe). Did the neuro have any suggestions? Would adding O2 to your CPAP help this?
I'm also and engineer and I'm trying to be very analytical about this. Drives my GP crazy, but too bad. I'm seeing the 2nd sleep neurologist at the beginning of August and I'll tell him what your neuro said.
OK, MRI clear. CO2 came back normal but CO2 is quickly changing. Test was a waste of time as it wasnt taken when I had problem. Neuro wants to consult with sleep neuro on trying a Bipap machine. The funny part is it only takes a couple deep breaths to clear the issue. It is not anxiety when we are sleeping. Haha. They just dont get it. We were anxious months ago but not any more. We are getting close. I have some new blood test tomorrow to rule something else out. Not sure what it is. I know this is CO2. Hypoventalation i think she is thinking. I need to research.
So are you using a straight CPAP right now with constant pressure? That's what I was using for a while, but it does nothing for me now. The 2nd sleep neuro that I'm seeing seemed surprised as if that was antiquated technology. Maybe it is since I was prescribed it 6 years ago. Some more advanced CPAP machines today can actually record various events you might be having during sleep.
As for the CO2, various blood tests that I've had recently show blood CO2 slightly to the high side, but not outside the normal range. But you're right, I'm not sure how diagnostic that is since the measurement isn't taken during sleep. I'm surprised no one is suggesting that you do a second sleep study where your O2 and CO2 levels could be measured more effectively.
One question I have though. Had this new neuro you're seeing ever heard of these kinds of vibrations? Or is she just assuming from other symptoms you've described that it's hypoventilation?
I still haven't gotten the results of my home sleep study yet. Very frustrating...
Sad to say my new neuro hasn't seen exact symptoms but simular. I do have a newer cpap. It will increase pressure if it detects breathing stoppage. It records events.
I feel another sleep study coming, but have never slepped more than a cpl hours and study is a fail. I need to hit deep sleep. I had a blood draw today. I do not recall the name. It is to detect some issue with lung muscle.
I have been dropping some pounds to decrease fat around my lungs. I do have a beer gut. I have been trying to take as little amatriptalyne as tolerable. I think it helps with sensations but makes problem worse. I cant go off of it completely.
I should be back at it on Monday. I have an Alaskan fishing trip comin up mid August. Hope to have an answer by then.
Thanks for the update. The neuro I saw that was familiar with this symptom immediately said that it was anxiety. His solution is anti-anxiety meds like Klonopin. Benzodiazapines are also respiratory depressants. No thanks. Sigh...
One question about your symptoms, do you get the vibrations only when you wake from deep sleep? That's when they happen to me, but I also sometimes feel the vibrations just as I'm about to drift off.
I also think that amitryptilene helps with the symptoms for some reason. But I typically feel like crap the next day. I've been off of it for a while and my symptoms haven't changed appreciably.
It started with strange dizzy feeling once in a while. Then progressed to a little electrical sensation down my neck. Then more severe tremors. I take just 2.5 to 5 mg a night. Dry mouth sux. It just takes off the edge. If I have a real bad night it seems like I am shakey (shaky) during the day. Jitters
I am curious about your home study. Did you sleep and have symptoms?
I'm not sure I have the electrical sensation in my neck, but I definitely have the tremors which vary in severity. I take 10mg of Ami every now and then. I don't seem to suffer from dry mouth, but I feel pretty weak the next day. I also feel jittery/anxious the next day when I have a particularly bad night.
The home study thing is really pissing me off. I think I mentioned that there was a problem with the recording unit. When I woke up that morning, it was powered off. Maybe I leaned on the power button in my sleep or maybe it malfunctioned. I called the sleep center and they said the best thing to do was to turn it in so they could download the data and determine whether enough was recorded. If not, I could do the test again. I've now called them twice and haven't found out the results yet. The last time I called, they said it could take 2 weeks to get the results. 2 weeks was up this past Friday so I guess I'll call again on Monday and then call the sleep neuro if I get no joy. But to answer your question, yes I slept and I did have the symptoms. I haven't had a night without the symptoms in quite some time.
One more question. When you get the vibrations, do you feel like you're having any GI problems? Rumbling in your stomach or anything like that?
I still cant keep wondering if it is not Bradycardia. What is your heart rate while sleeping? When monitor is on and I take a deep breath my rate goes up to 70 from low 50's. It only takes a little while and it is bac in lo 50's. Where are you located?
I'm not sure what my heart rate is lately. For a while it was definitely on the lowish side. mid 50s while lying down. I'll do a another couple of nights with my pulse oximeter and let you know the results. I'm in Chelmsford, Mass. About 40 minutes northwest of Boston.
Funny my pulse ox is usually 98-95 during the day. I wonder what the dif is. I am wearing halter mon tonight to get that out of the way. I was sure hoping to get somewhere before trip to Alaska in August. Not looking promissing.
I'm still with you both, hoping you are going to be able to figure this thing out before much longer.
Just reporting my MRI showed a slightly bulged disc in by neck between C5 & 6. Not sure that has anything to do with anything, but will be meeting with the Neuro dr. on 15 Jul to discuss it. When you had your MRI done, did you have it done on your neck or your brain?
Still trying out the new dosage for my thyroid medicine, keeping my fingers crossed it will keep me from losing any more hair.
Yes, my vibrations will cease when I take a couple of deep breaths. I am not on a CPAP and as far as I know I believe I have sleep apnea.
Well... Halter monitor. Bradycardia, but does not seem to be a problem. Heart slow at night but dont think it would cause my symptoms. WTF
blood test for some muscle disorder normal. Lyme test tomorrow.
Cardio called and said he would like me to go to a pulmonologist next. He said heart rate of 40 when sleeping is not that uncommon. That will probably be the last stop. I have been to everyone else twice.
-b any word on your sleep study?
ieagan my MRI was on brain stem and brain. I have an air bubble that is a normal thing from birth. Everything else is normal.
Met with my Neurologist yesterday concerning my MRI...she seems to think the bulge in the disc in my neck could definitely be causing the tremors or vibrations depending on how much it is pressing on the spinal column or nerves.
Have either of you had your necks examined, either x-ray or MRI?
I will be calling a Physical Therapist she has recommended and she is requesting they set me up with a home neck traction device. Will keep you posted.
I have had xray only. I have some arthritis in my neck. That would be cool if that turns out to be the issue. I have doubts as if i do not move the vibrations stay. If i take a big breath they go away.
I had pulm func test and they found some minor issues 8 months ago. They were not concerned at the time. I think we are getting to the bottom soon. Glad we are working in parallel.
I, too, have my doubts, but it may take trying to fix everything else before we find the actual problem. An MRI would definitely give a more complete picture especially if there is a bulging disc problem.
I am doing some neck exercises for now until I can get in to see the Physical Therapist. And making sure my pillow doesn't push my neck too far forward when sleeping. In the past, I tried to prop myself up to help prevent any acid reflux and may have compounded the neck problem since I have a tendency to slide back down while sleeping.
My vibrations will also stop if I just lightly touch my neck. Not sure what that is supposed to mean.
Will be anxiously waiting to find out the results on your pulmonary test.
Latest for me is that my home sleep study showed nothing. No central sleep apneas and very few obstructive sleep apneas. Sleep neuro says that home tests are not that accurate so he's agreed to order a "real" sleep study. He's not familiar with the sleep vibration thing and doesn't seem to be to impressed by this particular symptom. He listed a bunch of sleep medications I could take, but I'm not interested. So I'm not expecting much from him. At the very least, I'm hoping for a good sleep study to assess my current level of sleep apnea if any.
FYI. After some recent googling, I ran into another medhelp thread about sleep vibrations. Maybe you've found it already. In this thread, a number of people state that they found relief from the sleep vibrations when they were taking SSRIs. It's definitely not something I want to do, but I might consider it if it fixes this problem and helps me get some sleep.
I will check out the other site.
The problem with the clinical study is you cannot sleep. I have done 3. No issues found, but never slept good enough to agrivate the condition. Seemed i was holding my own for a while, but it now has moved to the next stage. I am now vibrating all night and cannot get out of it. I feel jittery all day and am having concerns that permanant nervous system damage may happen.
I feel my options are limited. I have tried so many doctors that look cross at me because they havent had a patient with my problem. Not sure what to do at this point.
I also wonder what happened to the people that formed this thread. Where did they go?
I had actually been sleeping a bit better. I was able to fall asleep easily, but still wake up multiple times throughout the night. So I figured that if that continued, I'd sleep enough to get more data to at least diagnose whether or not I have sleep apnea. Unfortunately, my sleep has also deteriorated for the last few nights. For 2 nights, I also vibrated all night. Last night, I didn't vibrate at all, but couldn't get to sleep. Hard to tell what's going on. Phase of the moon or something? In any case, I may delay the sleep study until I think I can get enough sleep to make it worthwhile.
I'm really getting the impression that (for me at least) this is somehow tied to digestion, hiatal hernia, and the vagus nerve. Vagus nerve involvement would also explain the afib I had for a short time not too long ago. In fact, the cardiologist called it "vagally mediated afib" which means the vagus nerve was telling my heart to beat when it shouldn't have. The vagus nerve is the nerve responsible for a lot of the autonomic nervous system functions which would explain why this tends to happen during sleep. Not that this helps with a solution though...
I have seen the Physical Therapist twice now. He is helping to relax all the muscles in my neck and back. Apparently they were all very tight due to spending extended hours on the computer with my work. I have 4 exercises he wants me doing at home as well.
My tremors are very mild now and do not seem to be waking me up as often at nights. If do notice them, I adjust my head so it is level and directly above my shoulders, and then I am able to go back to sleep fairly quickly.
I had chiropractic treatments 2 yrs. ago when this first started, but I feel the physical therapy will be more helpful with the exercises to keep my muscles strengthened. Otherwise, the minute I walk out of the chiropractors, everything gets out of alignment again too quickly.
I live in the Salt Lake City, Utah area so we are not anywhere close. I do hope you both are still hanging in there. I will be going in for my thyroid tests the first part of September and will let you know how I am doing.
Just returned from Alaska. What a beautiful place. I was only sleeping 6 hrs a night and fishing all day. No tremors at all. Worked my a.. off on the boat. I too spend several hours on the computer at work every day. I will try and do exercises to strengthen shoulders and upper back.
My son wrecked his car this morn and got flown to hospital. Really amped up the stress. He is going to be ok, but broke his leg pretty bad. My ears are screaming right now.
So sorry I am so late in responding...I don't seem to be getting the email notifications. Glad to learn your son is doing so well and so glad he wasn't hurt worse. Just sorry you both had to have all this stress especially after such a wonderful vacation.
Speaking of vacations, we are leaving today for the Idaho mountains where I grew up. Will be gone a week. I am doing very well with my tremors right now. They are very mild so I am going to continue to see the physical therapist and do my neck exercises. I am watching very closely that when I am at the computer I keep my ears over my shoulders and not leaning into the computer or over the keyboard.
Haven's heard from b1218. Hope he is still with us. Keep us posted on how you and your son are doing?
I'm still here. Glad to hear your son is going to be ok Toby. Nothing new to report on my vibrations unfortunately. Should have the results of my latest sleep study in a week or so although I don't think it will tell us anything. I'm also considering seeing a PT, Chiro, or D.O. to see if some sort of manipulation will help.
Thanks for your kindness.
My tremmors are now moving in to my hands. It is better than my trunk area. I can sleap better, but jittery all day.
No word from pulminologist. Ieagin, glad ur getting some relief. Hope that pans out.
I went to see the Neurologist in Oct 2011. She wanted to do an MRI on my neck then, but I waited until now to have it done so Medicare would cover it.
They found a bulging disc in my neck between C5 & C6. I am doing the neck exercises to strengthen my neck muscles and to get the other neck muscles to relax that I use too much while on the computer.
I, too, went to the Chiropractor several times for an adjustment, which I am sure helped, but the physical therapist has helped the most. I don't know if this is going to be the answer for you or toby, but I would really encourage you both get an MRI of your necks or wherever you think you vibrations are.
That still doesn't explain why just taking a deep breathe would stop the vibrations, but all I know is I am sleeping all night now most nights. If I do wake up, it is because my neck is pushed forward in the wrong position.
Maybe the breathe helps the muscles to relax, I just don't know. I am so hoping this is the answer for all of us.
Had another treatment with the Physical Therapist today. Things just seem to be getting better so I am encouraged. Here is a website for bulging disc in the neck and/or pinched nerve. He gives some simple but effective exercises you guys could try, some of the same exercises that my PT has me doing at home.
It might help you to determine if this is the same problem for you. I am wondering if toby's vibrations in his hands now might mean a pinched nerve . My PT was quite surprised I didn't have any numbness or tingling in my hands.
He also encouraged me to sleep with only 1 pillow instead of 2. He wants my neck in a neutral position...not pushed forward at all.
Keep me posted how you both are doing when you can.
Good luck Toby. Let us know what happens. Have you ever had a head/spine MRI like ieagen? Maybe something to run by the folks at Mayo. I'm seeing the neurologist on Monday to go over my latest sleep study and I'm going to discuss that with him.
This time I hope Mayo will do an MRI of your entire spine. I am really surprised they didn't do any when you were there before.
When I first started with these vibrations, I actually felt it on the inside of my right leg in the pelvic area. That was why I thought it might be from the tick bite I received on my right thigh. The neurologist seems to think I probably had a bulged disc lower in my spine at that time and then it went up to my neck 5 months later and stayed there.
The treatments from the Physical Therapist are great and I think are helping more than just doing the exercises at home. I am really hoping and praying you both can find some relief immediately.
Met with the sleep neuro today to go over the results of my sleep study. Looks like I still have significant sleep apnea although much reduced from a few years ago. 15 episodes/hour during NREM and 30 episodes during REM (down from 60). So we're going to try CPAP again. I doubt this will do anything for the vibrations, but maybe it will help me sleep through them better. I'm doubtful, but hopeful. I asked about having a head/spine MRI and he said he would never got that past the insurance company. Not sure why when others (like ieagen) have had one. He wants me to try CPAP for a month or so and see what affect that has. I might also try to find another (more flexible) neuro to pursue the MRI thing and/or just visit a Chiro or PT. I'm also looking for a Functional Medicine doctor to try to figure out my fatigue issues which I don't think can be completely blamed on the sleep/vibrations issues.
Thats all I have for now. Hope everyone is hanging in there.
Well, just started a chiropractor . I do have arthritus in c5-6-7. Got adjusted. My gut says that this is not my answer, but I would try anything. My issue is getting more intense and now having issues during the day. I have an appointment at mayo on the 24th of November. Hope the chiropractor is the answer so i can cancel the appointment. Starting out with 3 adjustments per week. I have been taking ami every night now. I might try and suggest testing for MS. I'm not sure what else to do.
The chiropractor should definitely help, but it didn't completely solve the problem for me. However, I feel it helped to keep things from getting worse. I, too, have some arthritis, in my neck. I take a Glucosamine/Chondroitin supplement and it really helps. You can get them at the health food store or order online.
I think the discs can get inflamed, which may cause them to start bulging and pressing on the spinal cord, which then could cause the vibrations. If this progresses, then the vertebrae, which are probably out of alignment, can begin to pinch the nerves, as well, which can cause the tingling and numbness in the hands or else where. The worse case would be a ruptured disc. I shake Turmeric on most everything I eat to help with any inflammation.
The neck and back exercises are vital in order to hold the alignment of the spine after you get your treatments. I, too, was wondering about MS, but your head MRI should have shown if you had any lesions, so I am hoping that will be the case.
b- Sorry to hear your doctor doesn't feel he could get your insurance to approve a neck MRI. My doctors always tell me they have to code it in such a way that the insurance companies will cover it. Of course, mine was through Medicare.
Even if you can't get an MRI, a visit to a PT, I feel, would definitely be beneficial. They give you a treatment similar to the Chiropractor plus send you home with the very exercises that will help strengthen the muscles that hold everything in place.
Please hang in there...the only other thing I am doing is the thyroid and anti-yeast medication. Still trying to get the thyroid medications just right. When the medication is off, I have a difficult time getting to sleep and staying asleep, regardless of any vibrations I may feel.
For some reason, I didn't get email notifications for the last two posts. I've started and CPAP again (with new machine and mask) last night and it might actually have helped a bit. Still woke up a couple of times with significant vibrations and anxiety, but I think I woke up fewer times and slept later.
Ieagen, so if I went to a PT, would they do some sort of tests to determine what therapy/exercises I need? Or do I need to see a Dr first to determine what the problem actually is so that that information can be given to a PT? I mean, if I told a PT that I was having sleep vibrations I'm sure they wouldn't know what to do about that. That was one of the reasons I wanted to start out with a Chiropractor.
I'm also going to take a different avenue. I've made an appointment at Dr Mark Hyman's (you may have seen him on TV or be familiar with his books) UltraWellness Center in Lenox, MA. This will be in November. This is a center for Functional Medicine where they try to get to the root of your problem rather than just look at a bunch of standard tests that appear to be normal. They also do additional testing that most traditional MDs don't do. It's pretty expensive and most of it won't be covered by insurance. But at least for now, I'm lucky enough to be able to afford this. And I can't think of anything more important to spend my money on than my health. As always, I'll keep you informed.
My brother messaged me the other day and told me about Dr. Hyman. I read some of the posted info and am curious to fid out what you learn. Seems like it makes sense to try and treat the illness vs the symptoms.
I have tried chiro for 5 visits so far. I do not see a change yet. I am still a little skeptical. I am trying to shed a few pounds as well.
I have something to share that i found out last night. When I wake up with tremors, i have always took deep breaths or moved around to get them to stop. If I do nothing at all, the tremors will stop on there own. It takes about three or four minutes. If I move around, it starts the tremmors over in a few minutes. If I continue to stay still, they will stop. This is why I thought breathing stopped tremmors. It was because I never moved and they subsided automatically.
Try to wake up with tremmors and stay calm and not move. See if they stop. I think when I move in my sleep, it is setting off the event and wakes me up. Then I keep resetting the events by moving again.
I know this does not explain why we are having tremors. It is just another clue.
I think this is pretty much consistent with what I experience. I'll typically wake up with the tremors, breathe or sit up, then change the side I'm sleeping on and the tremors will start again a while later. One difference that I've been experiencing lately is that since I've started using CPAP again, I can sleep on my back. I *think* my sleep has changed a bit because of this. I *might* be having fewer occurrences of waking up. I'm not sure yet as I've restarted CPAP only 4 days ago.
More questions: Do any of you have any other upper-respiratory problems? I ask because I saw a thread not too long ago where some people who believed they were suffering from chronic sinus infections were reporting similar sleep problems. And I just got hit with some sort of sinus problem (not yet diagnosed) a couple of weeks ago. I've had sinus problems for a while now that I think about it. I've constantly had to change the side I'm sleeping on during the night to let one sinus or the other drain during the night. This has been true for over a year and pre-dates the whole vibration thing. I've also been suffering from fatigue for a while which I attributed to not sleeping well. But maybe it's actually due to some sort of chronic infection? I know that some sinus infections can cause all sorts of problems some of which seem neurological.
This is something I'm going to discuss with the folks at the UltraWellness center.
I, too, am having to check this thread as I am not getting the email notifications either.
I wish I could show you both my MRI with the bulging disc in my neck. The neurologist sent me to the physical therapist with a picture of my MRI requesting a home neck traction devise as well as treatment so, yes, you will probably want to go to a Dr. first.
The physical therapist wanted to see how much he could manually straighten out my neck first and has not felt the traction devise was needed. I had my last treatment last Thursday. I still have very slight tremors, and yes mine go away shortly after they start without me doing anything.
However, I have found they go away sooner and pretty much stay away if I slightly tuck my chin and straighten out my neck from behind by pulling my head back without bending it. I do believe sleeping on my back rather than on either of my sides helps to keep my neck in the right position. It's hard to stay that way all night, though, so I do turn on my sides. When I do, I make sure my head is not curled forward or down towards my chest.
Toby, hopefully, the chiropractic treatments will in time help with the numbness or tingling in your hands and arms. All I know is anything pressing on the spinal column or pinching a nerve can't be good. After my treatments, my neck and back muscles were much more relaxed and not tied in knots so much. Did your x-rays only show some arthritis in your neck or was there any kind of misalignment?
b- I have heard about Dr. Hyman and am so glad you have this opportunity. I am not aware of having any sinus problems for myself. I have noticed my voice isn't as hoarse and so I think my silent reflux is doing much better now. Could be because I am on thyroid medication now.
Glad to hear your new CPAP seems to be helping somewhat. Hopefully, you will continue to be able to sleep better and have more energy.
Wish you both could get in for your dr. appointments sooner than November. Do keep posting and I, too, will keep checking this thread often.
take a look at this neurologist's website sleep, videos and vitamin d hormone sections:
wake up tremor is caused by poor sleep and vitamin d3 deficiency or overdose and additionally in bad cases secondary deficiencies to vitamin d3 of all 8 b vitamins.
vitamin d3 is required to be between 60 and 80 ng/ml and deep sleep (i.e.slow wave sleep and rem sleep) must be of sufficient duration.
deep sleep creates chemicals that repair the whole body and that includes wake up tremor.
Thanks for the information me_a_name. I've actually seen Dr Gominak's videos before. She's considered pretty controversial. Regardless, I did notice that my Vit D was low and started supplementing. At the time that my D was in the 50s, I was still having sleep vibrations. My B12 was fine, but I haven't had my other B vitamins measured. My wife's vit D is in the 30s and she sleeps like a rock.
It certainly wouldn't hurt for everyone to check their Vit D levels and supplement if they're low (which most people are). You'll probably want to supplement with a good form of magnesium such as magnesium glycinate or citrate since Vit D metabolism uses up magnesium. Lots of good information on Vit D here: http://www.vitamindcouncil.org/ and here: http://www.grassrootshealth.net/
thank you for your mayo clinic posts.
i hope you do not have to go back in november.
did you continue with vitamin d3... maybe reduce to 5000 iu daily?
have you considered magnesium glycinate or magnesium taurate for calming effect and help with sleep?
in my case i have up to 30 random sleep interference trains and planes noise events per night and have decided not to move.
insufficient deep sleep results in wake up tremor.
dr gominak should be involved with research on deep sleep repair.
is her statement in her 2010 video that it will require 5 years for someone else to get a handle on deep sleep repair happening?
do you have any sources or information on her being controversial or on deep sleep repair?
i have supplemented vitamin d3 for 1 year (4000 iu daily) and recently magnesium glycinate (400 mg magnesium daily) at bedtime.
the vitamin d3 has resulted in less frequent and less severe wake up tremor and elimination of (non-painful) migrane (migraine).
the magnesium glycinate should have a calming effect and help with sleep.
i notice your post in 1/2014 that you supplement d3 5000 iu and magnesium glycinate 400 mg.
do you have any effects?
have you considered magnesium taurate for calming effect and help with sleep?
Here's another possible theory on what might be causing this problem (at least for some of us): laryngospams. Here's some information I found: http://www.fauquierent.net/vcd.htm. And a (fairly old) research paper on the same: http://www.scielo.br/pdf/anp/v53n1/08.pdf.
What if the vibrations are actually part of some kind of anxiety reaction to being woken up? I've definitely felt varying levels of anxiety when this happens. And maybe that breathless feeling is actually a laryngospasm? I haven't had the "jumping out of bed gasping" level, but I've definitely had some pretty bad anxiety on occasion. And I've definitely something like maybe my throat closing for just a split second before this happens. The references talk about possible causes being: GERD (which I've had), sinus problems (which I think I may still have), allergies, etc. ieagen has had some thyroid issues which can also produce sleep issues and anxiety. In the research paper they cite on case where the patient was successfully treated with Amitryptilene. I'm beginning to think that Amitryptilene can paper over a multitude of problems. My sleep issues have definitely raised my general anxiety level (many of the patients in the study were perceived to have had some level of anxiety) which was admittedly higher than average to begin with.
In other news, I haven't had any vibrations in the last two nights. Is this a result of my re-starting CPAP? I'm still not sleeping through the night, but for the last two nights when I did wake up, I didn't feel like I stopped breathing and I didn't have any anxiety.
Hi me_a_name. I don't have any references regarding Dr Gominak being controversial. I just remember some statements (possibly in the comments posted with her videos) contesting some of her findings. I don't know for a fact that she's wrong or right. I've been supplementing with various forms of Magnesium for 2 years and it hasn't helped the vibrations. Although last night I tried Magnesium Malate and maybe that had something to do with it. I stopped Vit D supplementation for a while, but maybe I'll start again. Maybe the combination of magnesium, D3, and CPAP will do the trick.
I had tried magnesium and D3 for quite a while. It did not help vibrations. I was low when I started and went all the way to the top of suggested levels with no help. I seem to be headed in a bad direction. My tremors are progressing and getting more severe. I have very little anxioty at all when sleeping. It has been so long. My tinnitus is directly tied to the quality of sleep I get. It is to the point I can predict it by morning. I am now also having issues during the day. It is even getting hard to stop the tremors. Sorry for all the I's.
Amatriptalyne is not helping much any more. The side effects are horrendous and makes for long days. It feels tiring and dries my mouth. I am at 25mg per night. It is supposedly a small dose. It does not feel that way to me.
Honestly, I do not see the end. It has been slowly progressing for over a year. I have been working as a maintenance manager at a power plant. It is getting so hard to perform. I'm hoping Mayo can come up with the answer this time. Or b comes back with a solution from Dr Hyman.
Are you doing any anti-yeast medication along with cutting out all sugar and alcohol? Yeast thrive on both of these. b is taking Nystatin and I am on 100 mg Fluconazole, both good anti-yeast products.
Have you done any detox? I have only tried the coffee enema about 3 times now. It is supposed to stimulate the liver to release any heavy metal or toxins. I don't do them very often, it causes more of my hair to fall out...probably because of all the toxins.
Have you heard of the 12 Homeopathic Cell Salts? I just started taking some of these about a month ago. I get mine at the health food store or you can order them for less at vitacost.com. I am taking the Silicea 6X for my hair and nails, and the Kali Phos 6X for stress and simple nervous tension and sleeplessness.
It is hard to tell, as my vibrations have been pretty mild for the last few months, but I believe the Kali Phos. 6X is helping as I am sleeping most of the night. If I do have a tremor, it is very mild...no anxiety, I just adjust my neck and can usually go back to sleep without too much trouble. I did just noticed today my eye lashes seem to be growing in thicker so only time will tell if the Silicea 6X will help with my hair. I am sure hoping so.
I am hoping and praying you can find some immediate relief . If you should decide you want to try the anti-yeast medications, you may want to see an integrated or alternative doctor unless you can not find a medical doctor that will work with you on this.
i have no experience with any of the laryngospams triggers. amitryptilene sounds like treating wake up tremor which is a symptom and not treating the cause of wake up tremor. according to toby1101 amitryptilene has bad effects and in the long run does not work.
wake up tremor is caused by poor sleep.
vitamin d3 assists the body make repairs during deep sleep which stops anxiety and wake up tremor. magnesium glycinate or magnesium taurate(i have not tried this) is used before bedtime for calming effect and help with sleep and since vitamin d metabolism uses up magnesium. vitamin d3 and magnesium may require a few months to show effects. too much vitamin d3 causes negative health effects. dr gominak states too much vitamin d3 causes vitamin d3 not to work.
i do not use cpap. dr gominak would say cpap allows you to get sufficient deep sleep which allows your body to make chemicals and repairs which stops anxiety and wake up tremor. dr gominak claims if you get your vitamin d3 blood levels between 60 to 80 ng/ml and you get sufficient deep sleep you may not need to use cpap.
some points from the following expert on vitamin d3 supplementation. uses a list of negative health effects to determine too much vitamin d3. greater than daily 1000 iu will probably have some negative health effect. does more good than harm.
some points from the following expert on magnesium supplementation. good absorption is required. overdose only occurs if you have kidney problems. magnesium malate is used during the day because it provides energy. magnesium glycinate or magnesium taurate is used before bedtime for calming effect and help with sleep.
Very interesting information on both Vit D and Magnesium me_a_name. Thank you! Unfortunately, I don't keep a very good health log (big mistake), but I had a sneaking intuition that some of my flare ups might have coincided with increasing my Vit D supplementation. Maybe I'll take an extended vacation and spend some time visiting my mother in Phoenix to get more sun exposure. In any case, I'm going to stop my Vit D supplementation for a while and see what happens.
The magnesium information is also very interesting. I believe at least some (or maybe most) of my problem stems from a very bad reaction I had to an antibiotic called Cipro almost 2 years ago. There is strong evidence to suggest that the fluoroquinolone class of antibiotics (aside from doing a lot of other damage) drastically depletes magnesium. I think I'm going to switch to using mag malate during the day and mag glycinate at night and see what happens.
Just one correction ieagen, I am no longer taking Nystatin as I stopped the Lyme protocol I was doing. My Lyme diagnosis was always iffy and the Lyme doctor I was seeing was somewhat "eccentric" and didn't inspire confidence.
Today we had a wellness day at work. They set up several booths. I spoke with a naturalist doctor for a long time about my issue. She set a private appointment for tomorrow. Supposedly she can bring my nutrient level in every aspect to the top so your cells go into regeneration mode and you body will fix whatever ails it. She swears I will cancel my upcoming doctor appointment in November.
At this point what the hell. I appreciate everyone's help and responses. I will report back what she tells me.
So I saw Dr. lee today. She said that I have a lot of information and my tongue is swollen. She was able to read my eyes, my skin and my face and tell what's wrong with me. She is going to analyze all the information received today and I'm to go back next week. I'm supposed to start off with Braggs vinegar three times a day and one drop of oregano oil under my tongue once a day.
I'm still a little skeptical at this point. I can't see where this can do any harm. She spent most the interview reviewing a lot of cases you have in the past with success to try to gain my confidence.
I assume you meant "inflammation." ;-) What kind of practitioner is Dr Lee? Is she a naturopath? Lots of people (especially complementary medicine professionals) swear by the positive health affects of apple cider vinegar. It's supposedly great for digestive health and many other things. Google it. Don't forget to shake the bottle before you take it. And if it's too harsh for you, just dilute it in some water and/or add a little bit of honey. Oregano oil is considered a natural antibiotic and is used a lot by naturopaths. Hope this helps.
In other news, I've been using CPAP for a couple of weeks now. My CPAP machine collects data on an SD card and I've been looking at some of that data with some open source software called SleepyHead. I need to collect a few more nights data, but so far I think I can see that my respiration rate goes way down just before I wake up. A certain number of central sleep apneas is normal during the night especially when transitioning through sleep phases. It's more a question of how long they last. Maybe I sleep too lightly or am particularly sensitive to these events and thats why I wake up. And maybe the vibrations are an anxiety reaction or a reaction to low O2. I'm going to try using my pulse-oximeter to see whether I can correlate low O2 to the waking events. I have an appointment with the sleep neuro in a couple of weeks and want to present some of this data to him.
You're describing the problem that I've had since the beginning. It seems like no one can ever find the issue though. If you spend the night at a sleep study you don't sleep good enough and your breathing never slows down to see it.
My AutoCorrect doesn't work that great sometimes. Information inflammation
I still believe the vibrations are from my neurological system not get enough O2. Anytime I wake up having issues, I just breathe deeper couple times and they go away. I have an O2 sat monitor that will record for 24 hours. I can definitely see a correlation between my O2 sat and when my event starts happening. It seems that the more nights that I have issues the harder it is to get out of them.
Yes and yes. I have not put the SD card in my computer, but have seen the results at the sleep clinic. Unfortunately it does not show respiration rate. It does show that it works good at 10 ". I Had asked about central sleep apnea. They had tested me for that and said it was not my problem.
There's free software called SleepyHead which you can use to look at the data on your SD card. It might show you more than the sleep clinic showed you. I don't know what machine you have and so it might not be compatible. But it might be worth checking it out: http://sourceforge.net/projects/sleepyhead/
Well, seemed as if I turned a corner for a while. I Have been on a Carb free diet for three weeks and lost 17 pounds. Tremors backed off and became manageable. I have been taking several vitamins that the naturalpath recomended.
It seems as if I sleep on my side, it helps. It feels as if breathing is easier and my lungs get better gas exchange.
The last few days things have been headed in the wrong direction.
Apple cider vinegar is great. I Didn't even know I had a problem feeling bloated. It makes a huge difference.
Sounds like you're making some progress Toby. Yeah, I carb-free diet will do wonders for you. Could I ask what vitamins the naturopath recommended?
I've now been using CPAP for about a month and it seems to be helping a bit. I'm still waking up multiple times during the night, but I typically don't have any vibrations when I do and no anxiety at all. So maybe my untreated sleep apnea was exacerbating the problem. I pretty much always wake up in the middle of some vivid dream. They're not particularly disturbing or active, so I'm not sure why I'm waking up. I looked at my Sleephead data and I can still see multiple events of different kinds during the night: hypopneas, flow limitations, etc. Unfortunately, it's difficult to tell from that data when I was asleep and when I was awake. These machines can supposedly report lots of false events when you're awake because the algorithms were designed for breathing patterns during sleep.
But now I've developed another problem. I'm getting head pains when I move my head a certain way. This started before I started CPAP so I don't think there's a connection. I've seen a neurologist who ordered a head and cervical spine MRI so it looks like I'm finally going to get that MRI I've been wanting anyway...
So I'm seeing the sleep neurologist next week at which time I'll go over some of the data I've been collecting. My MRI is also next week so we'll see where that leads. And then I have the appointment with the functional medicine doctor the week after that.
Here is the list from the naturalpath:
Insisted I order from Swanson supplements
Calcium powder SWV168 One scoop per day
Magnesium TL939 two caps one half hour before bedtime
D3 NWF580 two caps Per day
Stress B complex TL132 two capsules three times the day
Chromium SW922 two capsules three times a day
Had liver oil NRN011 1 tablespoon per day
C0Q10 SWV035 two capsules per day
Zinc Picolimate 50 mg per day
Pravita supplimates only
Super B 12
I had to get three weekly pillboxes and the pills barely fit into the boxes
I'm supposed to take the supplement for about 10 days to 2 weeks and then give her a call and tell her how I'm feeling. She supposed to start me on some kind of food supplements after that.
Yes, thank you for checking on me. I am so glad to learn you are on a carb-free diet. That is when I first noticed I was getting some relief from my vibrations. Hope you can keep improving. I have been on my carb-free diet now for a year and am sleeping so much better. I cheat on my diet once in awhile, but not very often. My vibrations are ever so slight now.
b- I don't hardly ever dream so I don't know what that is supposed to mean.I'm probably a lost cause...ha! So glad you are going to get an MRI. I keep thinking with my hair loss, I need to have a head MRI next. Don't know that it would show anything, but it might.
I do dream, but rarely attach them to the vibrations. Sleeping is getting better, but I too have problems staying asleep closer to morning. My issues are definitely more severe when sleeping on my stomach. I am almost convinced that the vibrations are due to improper gas exchanges while sleeping. This may be dangerous,but I purchased a bipap machine a while back that I programmed for a slight increase on inhale vs. exhale. Trying it tonight. If I don't write anymore you know why. Lol
Still kicken! Lol. The Bipap didn't make a ton of difference. I Was afraid of setting it too high.
Just had another appt with natupath. Started me on food suppliments. It is all about eating live cells. Several products from Sunrider.com. Nuplus, Quinary, Fortune Delight, sun nectar, Slimcaps, Vitalite Sunbars. Vatadolphilis.
She keeps talking about their food containing 60 MHZ of energy. I tried to tell her that MHZ is speed and not energy. She said it is different. I do not see this anywhere on web. Hmm.
Got results of the MRI. No problems with brain were detected. The general comments from my cervical spine MRI were:
+ Mild left C3-C4 degenerative facet disease without joint
effusion. Otherwise, unremarkable craniocervical junction.
+ Mild C6-C7 greater than C5-C6 degenerative disc disease
without canal compromise or nerve root impingement.
According to my GP, this is not abnormal for someone my age.
My sleep is about the same although the vibrations have started again. I don't know whether I mentioned this before, but for a while I was taking an SSRI called Effexor XR. I was taking the smallest pill possible (37.5 mg). I stopped this a couple of weeks ago because I really don't like taking psyche drugs. But I wonder whether this was stopping the vibrations? The sleep neurologist I'm seeing believes that the vibrations are a nervous system reaction to some type of event during sleep (could be apnea, could be something else), but he's not sure. He's says that the fact that I'm dreaming more is a good sign since it shows that I'm more often in REM slee. I'm considering whether or not to start the Effexor again. It didn't increase my sleep although it certainly increased my dreaming.
I've also had my first appointment at the UltraWellness center and I was very impressed. I spend 4 1/2 hours their between meeting with the doctor, nurses, having labs done, and speaking with a nutritionist. The doctor wasn't familiar with the vibration problem specifically, but I believe that they can help get to the root of my fatigue and some other problems. I think that the vibrations are a symptoms of something and not the cause. So maybe when they figure out the cause (and hopefully treat it), the vibrations will go away as well.
The one thing I'm pretty sure of is that the magnesium definitely gives me better sleep. I tried not taking it on a couple of occasions and I had bad nights.
Good point, i have asked several different times to just try supplemental o2 of any form. They have no interest in prescribing it. I thought it would be another thing to check off the list. If it is a CO2 issue, it may make it worse,but at least it would help lead to the answer.
I was happy to learn your MRI was normal, but also disappointed it didn't show any bulging discs. Do either of you have any idea where your vibrations start up? I just knew when I touched my neck, it would make them go away.
However, as I mentioned before, when my vibrations first started, they were in my pelvic area and I was having a difficult time sitting at my computer. The dr. seemed to think I may have had a bulging disc in my lower back as well as in my neck causing the pelvic vibration and pain. I never had any pain with my neck, just the vibrations.
I feel I may have been exposed to something that caused the discs in my spine to get inflamed. Either that, or yeast toxins finally reached a level that it set off a chain reaction. The pelvic pain and vibrations started clearing up right away as soon as I went off sugar. I thought I was getting better until I got woke up suddenly with the vibrations in my neck.
Is an MRI the only way they can tell if you might have a bulging disc anywhere else in your spine? There are probably several different things that could cause the same symptoms and vibrations in one person could be caused by something entirely different in someone else. I hope not, though. I was so hopeful my diagnosis would be the same for both of you so you could get some relief.
All I know is I am not having the vibrations now and I am sleeping 6-7 hours every night. My quality of sleep seems to be more connected with my thyroid medication.
That is great news. I am curious if you had weight loss with vibration relief. I am doing much better. I Have lost 26 pounds so far. It is almost evident to me that my belly fat is causing restrictions on my chest. Sleeping on my side aides in removing some restrictions and helps lower the severity of the vibs. I Go back to Mayo on Monday. Hopefully knowing what I have learned over the last months will help get to the solution. -b, did you get your test results back yet?
I probably won't see my test results until around 12/22 when I see the Dr again. In fact, I haven't even finished all of the tests yet! The last one is a saliva DHEA/cortisol test and then I'm all done at least for now.
Interesting comment about sleeping on your side vs your back. I think (not quite sure) that my vibrations are better when I sleep on my side. Regardless, even when I wasn't having the vibrations (while I was taking Effexor) I was still waking up multiple times throughout the night.
Interesting article here given to me by the functional medicine doctor I'm seeing. Note the relationship between CO2 concentrations and panic disorders. What if the vibrations are really an anxiety reaction (without necessarily feeling anxious) to high concentrations of CO2 that could occur during sleep especially with some sort of breathing disorder...Toby, are you getting much exercise these days? It might help.
That is an interesting article. I am definitely lacking in the exercise department.
Well it looks like I'm on my own again. Mayo seems to be stumped with my issues. There is a test that will detect CO2 in your blood while you're sleeping. Unfortunately mayo only does that with juvenile patients right now. The doctor is supposed to be checking into using me for a test patient. I don't feel real confident then he's going to make that happen.
He seems pretty determined to try to treat my symptoms versus finding the group cause of the problem. He just prescribed me some gabapentin to try. I tried explaining to him and taking these types of drugs ends up making the problem worse in the long run. The more I cover up the symptoms the more severe the symptoms become. He went on to say that usually people with CO2 problems develop 02 problems first. I repeated back to him usually!
Set a follow up in three months. I do feel I'm onto something with losing my belly fat and potential he starting an exercise plan. I feel I'm starting to get on the other side of the eight ball.
I am starting to lose ground again. Last night pretty much sucked. I tried another experiment to try and make sense of what was learned at Mayo. Sleeping with the oximeter, I noticed my heart rate is usually in the upper 40s or lower 50s when in trouble. Usually taking 3-4 deep breaths makes the tremors stop. It also makes your heart rate shoot up to almost 70. This may be the culprit instead of O2 or CO2 issues.
I sent a letter to the doctor at Mayo last night after I was having problems. Last time he replied right away with an answer. I plan on pursuing this avenue for a little while to see what I can find out. There is no reason my heart rate low in the first place.
Do you know what you're her radius wall you're having the tremors?
I'm not sure what my heart rate is at the time that I'm having tremors. I do know that it can go into the 40s/50s during sleep (as measured during my sleep study) which is still considered within normal range. I haven't measured it myself lately, but I should. Still having reflux and some mild stomach pain during these events. I'm still thinking that this is related to some sort of vagus nerve problem. Not that that helps address the problem...
BTW, I think it'd be worth it for you to at least try the gabapentin to see if it provides any relief. It would at least be another data point even if you don't end up taking it long-term. At some point, we're going to have to admit that doctors won't be able to get to the root of this problem. At that point, it's learn to live with it or figure out what medications might help and weigh the trade-offs. I haven't quite reached that point yet.
Also, the fact that deep breathing seems to help this could also point to a vagus nerve issue. It's thought that the calming effect of diaphragmatic breathing is due to expansion of the diaphragm which soothes the vagus nerve. Again, even if I'm right I don't think it's going to help us get any relief.
Just FYI. I reported the fact that we're not getting email notifications and this is what the HelpDesk responded:
"I'm sorry this is happening. This is a site-wide issue, and our engineers are aware of it. They have found it to be a much larger issue than originally thought, so we don't have a timeline for a fix at this time."
Some more information supporting the whole vagus nerve thing. I've found many references to vagus-nerve-related problems. They mostly have to do with people who have hiatal hernias and/or GERD (I have both). It's possible to have a hiatal hernia without knowing it. It's also possible to have reflux (called silent reflux) without noticing it. Toby, you mentioned that you're overweight and weight definitely seems to be a factor in this. Lots of references to vagus nerve dysfunction effects on breathing and heart rate. "vibrations" are also mentioned. Of course, these problems are not well understood by traditional medicine. I haven't found any references to treatment other than a chiropractic manipulation that supposedly fixes a hiatal hernia and the use of benzodiazepines. Toby, you might want to mention the vagus nerve connection to your doctor at Mayo and see what he says. I'm also going to mention it to the functional medicine doc when I next see him.
"The role of the vagus nerve has never been well established in previous studies. Some authors have observed that gastric secretory response to insulin-induced hypoglycemia, a vagal-cholinergic stimulus, is impaired in some patients7,8 and that approximately 40% of patients with reflux disease have abnormal parasympathetic cardiovascular reflexes."
and "abnormalities of cardiovascular reflex function" in 40% of reflux patients.
and problems with your parasympathetic nervous system may even be the cause of your reflux:
"Disturbances of the parasympathetic branch of the autonomic nervous system in patients with gastroesophageal reflux disease (GERD) estimated by short-term heart rate variability recordings."
I emailed the sleep neuro at Mayo about the heart rate discovery. He set up an appointment on the 17th with a cardiologist to run it to ground. It is strange that my heart rate is so slow. Even when I work out on occasion it is hard to get over 140. I Used to have to back down to stay under 150.
May as well knock out everything since I reached my max out of pocket and everything is free till end of year. Woohoo
My ferritin within normal range last time I checked about two months ago. It was about 175. The doctor monitoring these levels indicated that he would like me to do two more phlebotomies and drive it lower. I told him to hold off for a little while and give it a couple of months because I wasn't feeling very good at the time. I have done 11 phlebotomies so far.
That's a good number (especially given what it was) although I do understand that they want to get it a bit lower to give you some additional "headroom." Have they also been monitoring your iron levels? I wonder if you're not feeling so well because you're a bit anemic.
My ferritin is still pretty elevated (high 400s) and function doc is concentrating on figuring out what the source of the inflammation is. At this point one test has come back indicating Lyme and another test shows that I might have GI yeast infection. Either or both of those could be the source of the inflammation. Not all test results are back yet so we'll see...
Back home again. I ran the cardio gauntlet. It takes an hour to tell the story to a new doctor. This guy is really digging in. I have several tests results on the way. All the metals, lyme, and exotic type blood tests. Also, endocrine, stress and tilt test. The cardio agreed that my heart rate is slow. He has a hard time believing that is the cause,but can't deny they seem related. He is going to set up a two night stay to try and capture data while being monitored. At least he is taking things seriously.
My ferritin is 89 now, but my iron is 150 which is high.
Had my follow-up appointment with the functional medicine doc yesterday. Nothing conclusive. Additional Lyme tests were contradictory. One showed positive for Borrelia, the other one for Lyme-related antigens was negative. So he's confused. Some tests showed some gut dysfunction and he wants me to start on a different probiotic to address this. Some tests showed possible heavy metals (like mercury) toxicity. He wants to run additional tests for this. Some genomic tests indicate that I might have problems removing toxins from my body which could explain the heavy metals. As to the sleep vibrations, he doesn't know. He recognizes that symptom as a symptom of Lyme disease, but it confused by my test results and lack of more serious Lyme-related symptoms. Although he does acknowledge the fatigue is also a Lyme symptom. Anyway, he's running a couple of other tests and wants to confer with some of he's colleagues. I guess I'm not surprised that he doesn't have any answers.
Toby, it sounds like your cardio is testing you for some type of dysautonomia. Did he mention that at all? I would also guess that your slow heart rate is not the cause, but a related symptom. Things that affect the vagus nerve can affect heart-rate, blood-pressure maintenance, breathing during sleep, and a host of other things. And I believe that some docs believe that some forms of dysautonomia are related to vagus nerve dysfunction. More layman's theories from me...
No mention of dysautonomia. I got the final test results back. Everything came out swimmingly. Too swimmingly though. My stress test numbers were twice as good as they should be for a 45yo guy. Crazy as I get very little exercise. This confused the cardiologist.
I am gathering more data on my own. I am experimenting with the pulse oximeter. It has an alarm so i set it to alarm at 49 bpm. I slept for 3-4 hrs with no issues. After waking and relaximg to retun to sleep, I started feeling the tremors and then the alarm went off. This happened twice. I plan on moving the alarm up a couple to see if it keeps tremor free for a night.
Do you know how low your heart rate gets when you sleep? It just seems directly tied.
My heart rate tends to get pretty low during sleep. I haven't measured it in a while, but I'll also run a few experiments and let you know. I really think that the low heart rate is not the cause, but just another symptom. Low heart rate can result from stimulation of the vagus nerve. Also, an HR in the 40s during sleep is not considered abnormal. So your doctors are probably not going to be too concerned about this. Anyway, I'll try my own experiments an let you know. A few questions:
So did the new cardiologist at Mayo cut you loose or is he going to investigate further? Did he have any ideas at all on how to address this problem?
You mentioned a while back that when you went on your trip to Alaska, you didn't have any episodes. I think most doctors would point to something psychological because of that, but I'm wondering if sleeping differently (different bed, different time zone) had an affect. Also, were you using your CPAP during that vacation and are you using it regularly otherwise?
Thanks for continuing to help me brainstorm through this.
I have another appointment set up at Mayo on March 2. That is when they are going to observe me for two days. The thought process behind this is that I will eventually have to sleepand they will be able to capture an event.
While I was in Alaska are sleeping schedule was much different. We fished all day and didn't get to sleep till late. Our roomsor set up with two twin beds and my roommate was an early riser. He woke up at 4 AM every morning to get ready and pretty much didn't allow me to sleep.although I was so tired from fishing all day the sleep that I did get was pretty good.
Unfortunately the ride to mayo clinic is about six hours for me. During the last ride back my father drove most the way. I was kind of tired not it off for quite a few miles.now my left leg is burning much as it did when I had a blood clot a few years back. I'm gonna have to go to the emergency room today I have a checked out.
Christiansro, thank you for your encouraging comment. This is frustrating for everyone. Hopefully will be able to figure something out eventually.
I ran a test last night using my pulse oximeter. My spO2 was pretty good with an average of 97.6 and only a couple of short-lived drops to 93. This is a lot better than it was before I started using CPAP again. My average heart rate was 52.2 with a low of 45. I'm not sure that the few lows correlated to when I woke up with vibrations though. I take a lot of magnesium and so I wonder if that lowers my HR a bit.
That is iteresting. You are pretty slow too. I would love to see what others do in comparison. A friend of mine is a nurse and rarely ever sees anyone in 40s when sleeping. They are concerned if it happens. I know it is said to not be uncommon though.
I have another appointment in March at Mayo. Any interest in going with me? We could compare results of tests and at least convince someone that I am not the only person with this ailment. There is power in numbers. Lol. As far as that goes, I open the invite to anyone sharing the same symptoms.
I should put a website together. It would be nice to put a comparitive spreadsheet together to gather more data. Can you attach a form on this sites mail? We could pass it around and grow the sheet.
At this point, I'm pretty convinced that my problems are digestive in origin. So I think I'm going to stick with working with the functional doctor for a while to see where that goes. Traditional Western medicine is notoriously bad at dealing with digestive issues.
I'm not sure if you can attach a form on this site. But you could always create a Google Doc or Google Spreadsheet and post the link here. A separate web site would be an even better idea.
Just some late-breaking info (which I don't expect to shed any light on the vibrations thing). The functional medicine doc I've been seeing ordered a Glucose Tolerance Test (GTT). This is where you drink some glucose and your blood glucose levels are measured over the course of 2 or 3 hours (mine was 2 hours). My fasting blood glucose has been on the high-side for a while (mid- to high-90s). This is still considered within normal range by most labs, but functional docs want to see it lower. My fasting insulin levels were OK as well. However, during the GTT, my insulin shot way up above normal and continued to rise over the course of the 2 hours. This is extremely abnormal. The sugar crash at about the 3 hour mark was not pleasant. I almost passed out. That + high ferritin + some other markers = significant metabolic issues.
I get copied on the lab results directly so I haven't spoken with the functional doc about this yet. Just more pieces of the puzzle.
electrical current / internal tremors you are experiencing is because of a drop in your hormone levels. It is not directly caused by your thyroid hormone levels, but abnormal thyroid hormones can cause a drop in your other hormones, when then leads to the internal tremor. It is NOT fatal, but it can be very scary. The tremors can be more noticable with added stress or upoon waking, going to sleep or resting.
Women make progesterone in their ovaries until peri-menopause which occurs around age 40 to 45. Men and women make progesterone in their adrenal glands. Progesterone converts to another hormone, allopregnanolone which activates the brain’s Xanax receptor, the GABA receptor.
Progesterone deficiency causes increased electrical current throughout the brain and body – thus any electrical pain signal, for example, a pinched sciatic nerve, will be amplified before it comes into the brain and after it enters the brain.
Hormone levels in the body can be affected by all sorts of things from stress, to disease to menopause. When your hormone levels are disrupted, these tremors can appear in both women and men.
You need to go see a doctor who specializes in BIO-IDENTICAL hormone replacement (or HRT). You don't want to mess with anything else besides the bio-identical hormones. Once I got on progesterone and got my levels up, the internal shaking and tremors completely stopped. I have talked to many other women and men who have had the same results once their hormone levels are under control.
I am actually a 34 year-old woman and not menopausal yet but I do have other health issues that have caused my pituiatry not send out the right signals for correct hormone production. I have no more issues with the internal tremors though now that I am doing HRT.
Also, consider switching to Armour for your thyroid.
Read some more about this and I guess it doesn't just apply to females. Although it's yet another controversial area. I've had my cortisol, DHEA, thyroid and testosterone levels checked and everything is fine except for testosterone. This has been true for a while. I was on testosterone replacement therapy for a while and stopped it because I was concerned about some of the potential side effects. I don't know whether that has anything to do with the vibrations, but I guess it's certainly not helping my overall health. Have you had your hormone levels checked Toby?
I have not done a lot of hormone tests. I did a cortisol test that showed there was an issue with my adrenal gland a while back. My thyroid has always been within the normal band. My T4 was on the boarder.
I talked to a Bioidentical Hormone Therapy dr today and she of course thinks they can help. It is not covered of course by insurance. Looking at a grand to get kicked off. I Basically got nothing to lose. Hormones relate to about every issue including bradycardia.
I know that it will most likely end in disappointment. Wouldn't it be great to rub a little progesterone on your belly and make this all go away? There will be a party at my place if it is the case!
You should really have your testosterone, estradiol, and DHEA tested to determine if there's a problem before you start hormone therapy. Any doctor can order those tests (in which case they should be covered by insurance) or you can order them yourself via one of the online lab companies. What kind of therapy was this doctor suggesting? Testosterone? Progesterone?
You might also want to do more research on progesterone. Here's a thread from ************ (http://www.************.org/forum/index.php?topic=36868.0) that talks about it's affect on GABA. There are additional links to research papers in this thread. So taking progesterone appears to have a similar affect on the GABA receptors as benzodiazepines. Likewise, it seems to have a significant risk of withdrawal symptoms. So I imagine that you could probably address the vibrations by taking benzos OR progesterone, but you're looking at the possibility of a nasty withdrawal down the road using either.
Just checking with you guys to see how you are both doing. Thanks for asking about me. I am still doing great ever since I had the physical therapy for my neck.
I finished taking my anti-yeast medication in Dec. I was on it for 1 yr. and 2 mos. I still limit my sugar and carbs as I don't want the yeast to come back. Every time I cheat and eat something with too much sugar or carbs, I lose even more hair.
I have had several hair analysis done. No mercury, but I did have some cadmium, aluminum and arsenic. Green drinks are supposed to help detox heavy metals so that is what I am doing.
I will keep checking back to see what is happening with both of you and to let you know if anything changes for me.
Thanks for checking in ieagen. What anti-yeast medication were you taking? The functional medicine doc told me that there's a good chance that I have an intestinal yeast infection based on some tests he ran. This would explain my GI problems of late. I'm taking a supplement he perscribed for that right now and have cut out all sugar, fruit, complex carbs, etc.
Never mind ieagan. I read back in the thread and saw that you're taking Fluconazole. I'm thinking of asking the functional doc about that or Nystatin (which I happen to still have a prescription for from the Lyme doc). He had also ordered some tests designed to see the level of heavy metals I have and a test that is supposed to help diagnose "leaky gut" which can often happen as the result of a yeast infection. I should have the results of these tests by the end of this month.
Latest for me is that functional doc has diagnosed me with Lyme and mercury toxicity. Either of these can cause neurological, digestive (which I have) and other problems. Admittedly, if I do have Lyme, my symptoms are relatively mild. So he's treating me for Lyme with a protocol based on Chinese medicine called "The Zhang Protocol" invented by a Chinese medical doctor in New York. You can google it for more information. I like this idea a lot better than taking heavy-duty antibiotics.
For the mercury toxicity he's starting me on a chelation protocol that will last for 3 months.
Doing both of these at the same time should be challenging. I'll post updates here occasionally.
A Glucose Tolerance Test also shows that I'm severely insulin resistant. Doc says that this could be due to gut dysbiosis and/or lack of sleep.
Does any of the above have anything to do with my sleep vibrations? No way to tell until I do the treatments for a while.
I should also point out that the characteristics of my sleep issues have changed a bit. I no longer feel like I stopped breathing. Maybe this is because I started CPAP again. I still wake up a few times during the night typically starting around 3:30/4:00 AM. Most, but not all episodes are accompanied by the vibrations and some tummy upset. So I guess this is progress on some level.
I am curious how they tested you for the Lyme and mercury toxicity? And what kind of a chelation therapy are they doing for the mercury?
In the back of my mind, I keep questioning my negative Lyme test as I understand one needs to have it done right away..the longer you wait, the harder it is to detect. As I've said previously all my symptoms started 2 months after I got a tick bite in Idaho. Granted Idaho is not known for high Lyme risk, but neither did I ever have any of the obvious symptoms so it is really hard to know.
Did they discover the insulin resistance with the A1c test or some other way? My last A1c was 5.6 and I was told that was okay. However, I still do not do well with high carbs. I am wearing a wig now.
Thanks for posting what they have found for you and will look forward to learning how you do on their protocol. I did google Zhang and it sounds like it is getting pretty good reviews. We will keep our fingers crossed and our prayers going.
Hope Toby1101 is doing okay in the meantime while he has to wait for his March appointment with Mayo. Any more thought about doing a website?
The functional medicine practice I'm going to pretty much tests everyone for heavy metal toxicity. This was done initially using the Hair Toxic and Essential Elements test from Doctor's Data. They also ran a Urine Toxic Metals Test (also from Doctor's Data) in which they give you a chelating agent to see how much of the toxic elements are excreted in your urine. I registered pretty high for mercury (although the doc said he's seen much higher) on both tests. Based on these results, he also ordered the Mercury Tri-test from Quicksilver which tests hair, urine, and blood and compares those values to see what your overall toxic mercury load is and how well your body is getting rid of the mercury. I registered high again for the overall load and slightly below normal for my relative ability to get rid of the mercury.
For the Lyme tests, I originally did tests through a Lyme Literate doc. These were the Lyme Multi-Peptide IgG ELISA Assay and the Western Blot from ImmunoScience Labs in L.A. On this test I was borderline positive for B. Burgdorferi and Bartonella. The functional doc ordered the Polyclonal Borrelia Culture from Advanced Laboratory Service in PA which came back positive. However, the iSpot test from Pharmasan Labs in WI came back negative. So the results are confusing (but maybe typical for Lyme tests). Regardless, the function doc thought that the positive tests together with some of my symptoms (fatigue, insomnia, and of course, vibrations) were enough to treat me for Lyme. I have no problem with this especially since we're using an herbal protocol as opposed to antibiotics.
As to Lyme disease in Idaho, it's suspected that Lyme disease is a lot wider-spread than originally thought. Also, there are tic-born diseases other than Lyme that can cause significant health problems.
The first indication of insulin resistance was my a1c which was 6.1. This was a surprise because I had been keeping it between 5.1 and 5.6 for quite a while. My LDL cholesterol and triglycerides were also elevated after a long period of them being normal. But the real test was a 2-hour Glucose Tolerance Test. This is where they give you a glucose drink and measure your blood glucose and insulin levels every 1/2 hour or 1 hour over the course of 2 hours. It's considered the gold standard for diagnosing insulin resistance. This came back severely abnormal. My blood glucose levels were pretty high although still with in normal range for that lab (but still too high according to the function medicine doc). My insulin levels were extremely high and didn't come back down during the course of the 2-hour test. Even worse, my blood glucose must have finally plummeted because I had a severe hypoglycemic event driving home and I almost didn't make it. Not surprising given how much insulin I was pumping out. My wife met me at the door with a glass of OJ and I was better after 15 minutes. If you ever have to do the GTT, I highly recommend you bring some OJ or a cereal bar to eat when you're done. The functional docs current theory is that this is being caused by gut dysbiosis (too much bad bacteria and too little good bacteria in the gut.
The chelation therapy consists of a chelating agent called DMSA which I have to get from a compounding pharmacy. It's not necessarily FDA approved for this purpose. In addition I'm taking sodium alginate, liposomal glutathione, and liver support supplement all of which are supposed to help in removing toxins from the body. He also suggested spending some time in a sauna (preferably infrared) 3-4 days/week. That one is going to be difficult to manage since there aren't many infrared saunas around and I'd have difficulty making the time for this. So exercise and epsom salt baths might have to do. Anything that helps you sweat...
As to your issues ieagen, losing your hair really sounds like a thyroid issue. As I'm sure you know, it's often difficult to get thyroid meds just right. Functional medicine docs are usually really good at thyroid stuff and are fine with prescribing whatever thyroid medication works.
I am glad to hear that you have a path chosen to go down. Although, I have pretty much lost faith in everything. It is tiring to have to convince every doctor that you have something real and are not some lunatic with anxiety issues.
My tremors have again progressed. They are every night and can no longer be stopped by rapid breathing. I did discover that sleeping on my side in the neutral position, the symptoms are much lighter. Also, losing weight is helping. I Thought it was carbs, but it is just the weight.
The tremors are getting different. The frequency is slower and in both hands and neck. I am sleeping better as it has become part of my normal life.
I made an appointment with a spine specialist to run ieagen's theory to ground. There is some arthritis in my neck. What if a nerve was getting compression while you are sleeping causing this condition? It only happens when I sleep for a period of time. It gets severe when sleeping on my stomach. My appointment is on the 24th for this.
I had two blood tests for lyme both negative. Now I wonder. If things change for b I will have to explore this.
Not sure why but my hair is falling out as well.
I developed gout from a high protein diet. What next.
I will research a website again. Kinda fell off the list.
Sorry, Toby, to learn your vibrations seem to be getting worse and that you have gout as well as experiencing hair loss. You sound really discouraged. I am truly hoping and praying your appointment tomorrow will find something that will give you some relief and encouragement.
b- I am definitely going in and having my A1c checked again. As far as the detox for the liver, the herbal formulas will cause my hair to fall out even more. I can only take about 1/4 of whatever they recommend. Thank you for giving us such a detailed protocol of what they are doing for you. Sorry you had such a crash after your glucose tolerance test. Just glad you made it home safely. You would think the doctor would have made you aware of that possibility.
I am assuming your insurance is not going to cover much, if any, of this. I may have to request the Lyme tests you did as a last resort. Keep us posted.
My appointment was interesting today. The doctor took 5 shots of my neck. He immediately asked if I had ever been in a serious accident in the past. Which there has been a couple. My C5 disk is bulged and out of position. My C6 is damaged as well. I have arthritis that is fairly progressed. Going for an MRI tomorrow to see if my spinal cord is getting touched.
His was surprised that I am not having more issues. Sounds simular to ieagan. Hmm.
On another note my insulin level is high. 22.2 uIU/ml. 19.5 is high limit.
All thyroid tests are low but within normal range.
I had 65 blood tests all in normal range.
Those are interesting results toby. The results of your MRI should be even more enlightening.
I assume those were fasting insulin levels? Most complementary medicine practitioners would consider those numbers very high even though many labs have higher ranges. The functional medicine doc I'm seeing says that they like to see fasting insulin levels be lower than 10 and ideally lower than 5. Your numbers suggest some amount of insulin resistance. If you're overweight, there's a good chance that you're insulin resistant. The definitive test for this the oral glucose tolerance test I mentioned. Unfortunately, most traditional docs don't do this test.
Would you mind posting your thyroid numbers? Low-ish thyroid numbers (even if standard labs consider them in the normal range) can still cause problems for some people.
To answer ieagen's question, most of these charges were not covered. A small amount of the office visits are covered as out-of-network. Most of the "standard" lab tests are fully covered as long as I have them done at LabCorp or Qwest. The doctor will just write up an order for me that I can take to any of those labs. However, if I have the blood drawn at the doctor's office, it's considered out-of-network and only a percentage is covered. Very few of what would be considered "non-standard" tests were covered. So that includes the Lyme tests, some of the GI studies, some of the mercury tests, etc. It's conceivable that I could argue those and get some small amount reimbursed, but I just don't have the energy for that right now.
Those thyroid numbers are about the same as mine and look fine. Looking forward to hearing about your MRI results. Your fasting insulin is well within the normal range that most labs use, but still higher than integrative/functional docs like to see. If your fasting blood glucose and/or HbA1c are OK, I doubt any traditional doc will look into that any further.
Hi. I was wondering if you folks would like to participate in a short poll (one question only). If you have a moment, go to the front page (hit the back to community button at the top of this page) and locate the poll about sleep topics. I would love to have your feedback. Thanks, H.
MRI was not as bad as the xray. No spinal cord damage, but bulging C5-6 disk pushing on nerve roots. Doctor wants to shoot this area with cortisone to see the effects on my systems. If it makes a noticeable improvement, then we can discuss treatment strategy.
Toby, Wow! Finally! I am so glad they finally found what is probably causing the vibrations. Did you do the cortisone, yet? I hope they will have you do physical therapy, rather just rely on the cortisone.
Just had my A1c checked. It came back at 5.7, which I feel is getting too high. I didn't understand the readings you two were talking about as far as glucose levels. My fasting glucose level was 89, which isn't too bad, but my daily average from the A1c was 117.
That is so weird to me as I have really cut back on sugar and carbs. Maybe I am eating too much fat in all the Almond Butter I like to eat and I definitely sit at the computer too long. I am going to get up and exercise every couple of hours, even if it is just walking around.
That sounds very promising toby. Can't wait to hear the results of your treatment. Ieagen, even traditional medical doctors are coming around to the idea the sugar is bad...period. Healthy fats (like the fats you get from nuts and nut butters) are fine and are probably not contributing to your a1c. Stop eating sugar entirely and you should see a significant drop in your a1c and the chances are good that you'll feel better too.
I am definitely cutting out sugar. I am trying to follow the "Eat Right 4 Your Type." We'll see how I do. Because I am blood type A, I am supposed to be vegetarian with only an occasional chicken or turkey. No red meat.
Did you mention what they want you to do for your insulin resistance? I am supposed to drink 70 oz. of water, eat several small meals through out the day, exercise at least 2 1/2 hr. a week, low fat low cholesterol, and do not go without eating.
One of the supplements I'm taking, Chromium Piccolinate, is supposed to help address insulin resistance. Beyond that, I'm not exactly sure. We discussed a lot of things during my last appointment and I didn't have time to have all of my questions answered. According to the doc, insulin resistance can be caused by many things including gut dysbiosis and lack of sleep (both of which I have in spades). Given this, it's not surprising that my a1c and lipids (cholesterol, trglycerides, etc) seem to swing all over the place from month to month. To be honest, I'm a little confused about why we're not concentrating more on my gut at this point. I think the answer is that he's more concerned about addressing my high mercury levels and Lyme at this point. This is the #1 question I plan to bring up at my next appointment in a couple of weeks.
I don't know if any of this will help address my sleep vibrations, but maybe it will help with my overall health and my vibrations indirectly.
Hormone specialist said I am low T and adrenal is bad. Wanting me to start testosterone injections and adrenaline supliments. She don't think it has anything to do with tremors. She wants me to try soft neck support while sleeping. She claims that if it was hormones it would cause tremor in whole body.
Interesting. Did you mean "adrenal" supplements? I've never heard of supplementing with actual adrenaline. I was doing T injections for a while as well. Still considering whether I should start that again although functional doc says that my T levels are not quite low enough for that. My GP would probably disagree. After a while, I learned how to give myself the injections. It's easy, more convenient, and less expensive than having to go to a Dr's office every week or every other week for the injections. Would you mind telling me what your T levels were and what dosage of T (I assume it's T cypionate) she's recommending? I wouldn't be surprised if adrenal fatigue and a hormone imbalance are contributing to the tremors. Addressing adrenal fatigue would be a good thing to do regardless. Surprisingly, my tests show that I don't suffer from adrenal problems.
Yes on adrenal supliments. Pure Calm. My T levels are total-324 ng/dl free-67.3 pg/ml bioavailable-138.3 ng/dl globulin-17. She is consulting colleagues on how to handle injection. I had a blood clot before and heard T may cause issues with that. I plan on self injection.
So those are "low normal" values, just like mine. Yes, I definitely had some benefits from the T. More energy, increased libido, put on some muscle and lost some fat, etc. I stopped taking it because I became concerned about some of the side effects and the fact that I didn't think my GP knew what he was doing. For example, along with the T, you should have your estradiol levels measured to ensure that not too much of the T is being converted to estrogen. I was also taking 200mg every other week which caused lots of highs and lows and so 100mg every week might have been a better choice, but he didn't want to do that. In general, you're going to get some peaks and valleys if you do injections. The other option is the creams which you use every day which obviously results in a more constant T level over time. But it's a lot less convenient and more expensive than doing the injections. I'm still considering whether or not to go back on it, but am waiting to see what progress I make with the mercury and Lyme treatments before starting on anything else.
Tremors have gotten a bit worse again. I'm not sure why. I'm done with the mercury protocol next month (3 more rounds to go) and I'm going to re-start the Lyme protocol in a couple of weeks after I get back from a college visit with my son. Sigh...this really *****.
Tremors have been consistent here. I am back to Mayo in a week for another sleep study and polysomnogram. The Doctor does not want to take a chance with Testosterone unless a coagulation study is performed.
I never dreamed this would be so tough to figure out.
Just discovered this thread today. I also have had progressing night tremors for a year and a half. I have had various MRIs, PT, blood tests, etc. But just wanted to say that I have had some relief from drugs prescribed by neuro and sleep doctors.
I am on small doses of clonAZEpam (.5 mg) and Gabapentin (600 mg) and these have provided some relief. For a while, the clonAZEpam totally stopped the tremors. After a while, the period of relief shortened to just a few hours per night. The Sleep people put me on the Gabapentin which seems to mute the tremors without really stopping them.
These are no long term solution since either the effectiveness of the drug diminishes over time or my tremor situation continues to worsen. But thought I would mention it.
Thanks Bob for the information. I Just returned from Mayo and had a test to prove that it was not CO2 building up. It appears that this too is not the issue. He suggested trying clonazepam, but I can not take the side effects.
Just checking in to see how everyone is doing. It has been awhile since we have heard from b1218. Have you started on the Lyme protocol, yet?
I am doing fine still. Just hope all of you can find some relief soon. I am thinking if the spine could be pulled and straightened if that might help. Toby, what are they doing for your neck? Did the cortisone shots help?
Have either of you received any physical therapy? I would think they would have offered that for toby along with the cortisone shot. Are either of you doing any thyroid medication, yet? It takes being on it for 4-6 weeks before you can tell if it might be helping.
I did 3 coffee enemas over a 6 month period to try and detox. I am drinking alkaline water, ph 8, and I am sprinkling Turmeric on my food as an anti-inflammatory. What blood type are the two of you? I am A- and am trying to follow "Eat Right For Your Type". Can't do the soy, however. I believe soy has a pretty negative effect on thyroid.
You both sound exhausted. Please check out the physical therapy as soon as you can and you may need to insist on a low dose of thyroid meds just to see if it might help.
I am still hoping what you both have is the same as what I had and with the right treatments you will be able to get some relief. I am praying for both of you. Once I started my thyroid meds, I did not seem to have any more silent acid reflux. Interestingly, I had to give up my greek yogert, or I would be hoarse by bedtime.
Thank you for your support ieagen and for staying with us even though your symptoms have resolved.
Yes, I'm pretty exhausted. Although in some respects, the fatigue part of this has improved a bit. I can now work a full day without losing it by 3:30. So that's progress. Like I've said, I don't think the vibrations are the root of the problem. Just one of the symptoms. And I think there are a number of conditions that can cause the vibrations. So to be honest, I'm less concerned with the vibrations than the fact that my sleep is poor. Without sleep, it's difficult to get healthy. So are the vibrations causing my sleep issues or is the same thing that's causing my sleep issues causing the vibrations, fatigue, GI problems, etc?
For the last few weeks, my GI problems have sort of trumped everything else: stomach pain, bloating, reflux. However, today those problems seem to be much better. That's been the pattern with me. My symptoms seem to cycle without any apparent pattern.
One common thing that I see with the 3 of us is some sort of hormonal imbalance. With ieagen, it's thyroid. With toby and me, it's testosterone. It's hard for me to remember exactly, but I *think* that I didn't have the vibrations while I was on testosterone replacement therapy. Not surprisingly, I felt much better in general during the time I was on TRT. So (and I think I've said this before) maybe trying TRT again would be worthwhile. But I still don't want to do this until I've gone a bit further with the treatment prescribed by the functional medicine doc. Toby, what's your status with doing TRT? Did you decide to try a cream rather than do injections?
To answer ieagen's questions:
Yes, I did some PT and it helped my neck and head pains quite a bit. But it didn't do anything for the vibrations. My blood type is O+. I'm aware of the blood type diet theories, but I haven't looked into it much. Right now, I'm on a fairly strict diet since I seem to be severely insulin resistant. I'm also trying a low-histamine diet (see below). My thyroid numbers (including TSH, free T3, T4, and reverse T3) are very good even by alternative medicine standards which typically uses much narrower ranges for normal.
And now my latest theory. Many of my symptoms are consistent with histamine intolerance or what they are now calling Mast Cell Activation Disease (MCAD). This can be due to your body not processing histamine correctly or producing too much histamine. It would account for my chronically stuffy nose and recent food sensitivities/GI problems. I realize that it seems like I'm just chasing one far-fetched diagnosis after another, but this one actually makes a lot of sense. And MCAD can be triggered by some other event like and infection or Lyme. It's another one of those difficult-to-diagnose conditions that many doctors (even alternative doctors) are only now becoming aware of. I recently tried modifying my diet to a lower histamine diet. This meant giving up all fermented food including yogurt and kefir. I also started taking Quercetin (a natural mast cell stabilizer) and Histame (a supplement that contains DAO which is an enzyme involved in the conversion of histamine). It might be a coincidence, but my GI problems are much better now. Even my stuffy nose seems to be a bit better. But once again, this didn't touch my sleep problems.
Anyway, just writing all of this has tired me out a bit.
Thanks again ieagen for your thoughts and continued good luck to everyone.
I had done some physical therapy in the past. The spine doctor basically said physical therapy wouldn't help my condition. I haven't tried testosterone yet because I am on blood thinners from a previous blood clot.I have appointment in a few weeks that I may ask about testosterone cream. It seems when I eat low-carb I have less issues. My vibrations have gotten more intense and start a lot earlier in the night. I have learned to live with this issue. I can get some decent sleep most nights.
I’ve been following this thread for a couple of years now dealing with basically the exact same thing that others have described here. I still don’t have a good understanding of what the root cause is but I believe I’ve uncovered a few different triggers that wanted to share with the group. It seems that if I avoid these triggers then I can almost eliminate the tremors.
Multivitamins is probably the single biggest one for me. I’ve tried many different multivitamins and react badly to all of them. I had a GI problem a few years ago and had some absorption problems so I was taking various vitamins/minerals – it took quite a while to make the connection between the multi and sleep tremors. I’ve taken various single vitamin/mineral supplements and some are fine while others seem to cause problems. B complex, B1 and CoQ10 seem to be problems and zinc is suspect. Calcium, magnesium, copper, B6 and B12 all appear to be fine. I don’t have enough info on any other to say either way.
I was tested for MTHFR and am heterogeneous for the 677 mutation. I have been taking methylfolate, methyl B12 and P-5-P (active form of B6). This seemed to have helped.
I also suspect a few different food triggers with beef being at the top of the list. Quite a few other foods fall into the suspect category including cheese/dairy.
It’s tough to determine specific cause and effect but I believe the above info to be correct enough that I wanted to share it in the hopes that it may help someone else.
With all of that said, I believe there’s a still unidentified underlying issue that is causing the problems. Vitamin B1, CoQ10, zinc, etc should not cause any negative reactions but they seem to. So my next step is to try to dig into this aspect of things more.
Thanks for your input. I don't have the same reaction to vitamin supplements. It is so hard to tie anything to this frustrating problem because it is so cyclic. Every time I think it's a trigger, a bad week occurred changing my mind. The only trigger that is confirmed for me is sugar.
When behavior is good and eating lower sugar, it decreases tremmors.
I am also heterozygous for the MTHFR 677 SNP and am taking supplements with methylated forms of B vitamins and CoQ10 plus some other supplements. I think I'm going to do an experiment and go off of my supplements for a while to see if anything improves. Then I'll add them back slowly one by one to see if anything changes. I also agree that eating poorly can affect this. I've been trying to eat pretty clean and when I don't I think the vibrations get worse. Difficult to say, but I wouldn't be a bit surprised that sugar exacerbates this condition. Sugar in general is bad...
I doubt that the MTHFR mutation itself is the culprit as apparently a significant minority of people have at least one of the MTHFR mutations. Although reduced methylation could account for some sort of additional toxic load/inflammatory condition that results in some neurological problems one of which is the sleep vibrations
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