I had a terrible time with insomnia this summer. Originally, my GP thought I was having thyroid problems. When the endo finally put me on propranolol for the tremors, within two weeks I was finally able to sleep. The propranolol is a beta blocker that slows down your sympathetic nervous system. I can't tell you that I am sleeping like I always did before this started, but I can tell you that I started sleeping 3-4 hours a night at first. There are some nights now that I sleep maybe 5 hours straight. And others where I will sleep a combined total of 5-6 hours. Fortunately, I can function just fine on that amount. I never required that much sleep anyway, but I had a hard time this summer when I would sleep 1 hour on most nights, some nights, not at all. I don't know if this would work for anyone else with insomnia, but it seems worth a try. Certainly better than the other sleeping aids that can be addictive or short-term. I have been taking it since August and the neurologist says there is no reason that I can't continue taking it as long as I need it.
I have been reading posts in a forum at www.aboutbfs.com. It seems that there are a lot of people there who have these internal vibrations. I have found a lot of connections to my symptoms there. Your might give it a try.
I am so sorry you are experiencing this. I understand how these things can affect you. Sometimes I look at other people recently and see their busness sense of sharpness, etc. and think I use to be like that...what happened? My memory has caused me missing business appts., names of co-workers, looking at menus and feeling confused for selections and sometimes when talking to business associates I feel the need to put my glasses on to hear better. I have been a leader in my field -- now days are harder.
This internal vibration is so odd. Day or night. I have mitral valve with regurgitation (mild) and sometimes in the vibration I
sense a pause then start..pause then start. It makes me wonder if this is my heart. Sometimes I feel it stronger in a body part -- including my head. No one can feel or see it.
I had alopecia areata as an adolescent, rheumatic fever as a
child and then several years ago went through a horrible time of
itching in the same spot on right forearm every night. It drove me wild the area was no larger than a 1/2 dollar then began to work up my arm. Then it started after a while on the exact same side of the other arm -- the only thing that would relieve it was ice packs to deaden the sensation. No other body part was affected. An allergist or dermatologist could not find reason. It went away and never came back after months. Topical cortizone did not help at all.
I am a very happy person -- not depressed -- very active. This
is so wierd. My truly biggest problem right now is it is so bizarre all that I am saying that I am taken seriously and not a complaint of someone crazy!
I am with you...I want to know what is the matter! Hopefully this doctor will give us some insight....thanks for your response...we will wait together to see what they have to say!
I was just reading your comments about internal vibration because I am 35 years old, have been very healthy up until recently. I exercise every day, eat well, and am a medical professional. I have been worked up as "possible MS" . I have a mildly abnormal MRI. Mild mitral valve prolapse. Normal LP, blood work, VEPs, etc. I am going to the Mayo Clinic for further testing. I have had this vibration for two weeks. Just prior to this, I had blurry vision, days-long dizzy-disorientation feeling, tingling, mental fog. I recently acquired Horner's syndrome, where one pupil stays small even in dim lighting. I have always been a sane, rational person, but this is so strange. I don't know if my doctors are taking me seriously.
Thank you for your comments. I am sorry you are having the "internal vibration" and fogginess symptoms as well. This is very bizarre. I too am healthy otherwise.
I serve in a professional industry as well and been very
active, sharp thinking and quick. I don't feel I am that way anymore and it is very sad to me. My mind gets exhausted thinking sometimes.
I have an appt. at Cleveland Clinic early November and will post after to share. Please...do the same for me. Thank you for sharing your situation. It does help to know I am not "crazy."
I am so glad to hear more about those of us suffering from these internal "tremors." It seems like there is so little out there regarding this phenomenon. I started mine about 5 months ago. You can see my archived thread that I wrote here in August titled "Internal Shaking Won't Stop" (or something like that.) I have been searching for answers since then. One of the things that I am strongly considering is that this is an autoimmune response to a virus I had in February. There is a healthboard that I have been frequenting www.braintalk.org. If you choose the General Neurology and Rare Disorders, (I think that is what it is called. It is the first link on the list.)there are many things there that I have learned. See if it helps you.
I had some weird symptoms (stiff neck, excruciating headaches, and a very sore area right behind my left ear) a couple of weeks after I got over the virus. It was shortly after that that the neurological symptoms started. I had the sensation that my left arm was weak, I felt like my arm was filled with a bag of worms crawling around, and I had myoclonus jerks at night when I tried to sleep. I then made the mistake of going ahead with a hysterectomy that was scheduled in May. Within two weeks after my surgery, my body went haywire. The tremors started, I had incredible insomnia, tremendous ADD-like behavior, senstivity to sound and light, prickly skin. My symptoms have not really gotten worse, but they have changed somewhat. I don't feel like my brain is in a fog, but more like I have the feeling of having a head cold, only without the cold. My head feels "tinny" if that makes sense.
Anyway, I can't remember if we can leave our e-mail address on these boards, so I won't leave it here. If you go to the Brain Talk website, my name there is carolmerrill. You can send messages directly to me there.
I'd really be interested in hearing from any of you that are suffering from this.
I'm another with the internal tremors. Unfortunately, mine has lasted over a year and I don't see any end to it. It's like my entire nervous system is on overdrive. When I should be calm and relaxed, the buzzing creates a feeling of anxiousness. If I'm actually nervous, tired, or try physical activity (other than walking), I feel completely shaky. I also have the cognitive problems - when I'm trying to remember something, it feels almost painful when I can't. I can't have a peaceful night's rest, because I move about (generally without even knowing it), and don't go into a deep sleep. Consequently, I take a low dose of Klonopin every night. I also take Tegretol twice a day, which seems to help the vibration feeling somewhat. These are the main complaints, although there are also other symptoms. The neurologist doesn't say much, just that he doesn't think it's anything bad. The thing is, that when the doctors don't know what it is, they just get tired of seeing you, because they don't have anything else to say! It's basically just "wait and see". It's not very reassuring, but I'm trying to live with it because I have no choice. At least my symptoms are alot better when I'm not in a state of panic.
Thank you for your post! This is amazing. I too searched all over for information regarding this sensation and minimal is posted.
I do know there was a dividing line in my life when I did not have this and now I do. It is very noticeable to me.
I think if we continue to talk about this and share the doctors will take note at something we say that may bring about
answers or link issues together...
Thanks! Keep posting here if you get any answers too please!
I hope to find an answer soon at CCF.
I just wanted to let you know that I've read your posting along with the others. I suppose that all we can so is see the medical professionals and live as best we can.
Thanks for the posts! I am very glad to be able to communicate.
I did read the August post prior to me posting regarding "Internal shakes" and thought wow..somebody else is talking about this. I went to BrainTalk and can't post because I can't remember my password...ugh.... I will e-mail when I get back from being away this week. I was able to read though. I noticed radrhatr you are from Kansas.
I agree that we have to do the best we can for now until someone figures out what this is...I'm going to continue searching!
This is EXACTLY what happened to me. My body felt like it was in a hyper state constantly. It wouldn't shut down enough to let me relax. I couldn't sleep at all. I was feeling extremely anxious. And of course my neurologist wrote off a lot of it to anxiety. But there is something PHYSIOLOGICAL that is causing this. It is not all due to anxiety. I am taking propranolol which does not do much for the tremors, but it has allowed my body to slow down some.
This summer I was not in any state to be accepting of this in any way. As time has gone on, I now want to seek medications to relieve my symptoms as best I can with a minimal amount of side effects. I am not sure I will ever figure out what is wrong with me or what caused this, but I don't think I will ever give up trying.
josie55: let us know if you find out anything at CCF. I have an EEG scheduled in a couple of weeks and an appointment with a new neuro. am not holding out much hope for a quick diagnosis, but I can't give up trying. I also find it interesting that we both had hysterectomies about the time of these symptoms. Any connection there do you think? I am not on HRT as I still have one of my ovaries.
Everyone: does anyone have muscle pains associated with these symptomes? I have these pointed pains in the same place in my back, my left bicep, my left elbow muscle, and my left tricep. It doesn't happen all the time, just certain times when I use my muscles in a particular way. I also have the sensation that my left arm/wrist is weak, but I know I have strength. I can lift and I don't ever drop anything.
By the way, my name is Caroline.
Hi Caroline, I do also have muscle pains, but not constantly. For example, when I do any type of exercise where my muscles tire, then I'm hurting for days afterwards, and all my symptoms are exacerbated. Also, when I press firmly on the muscles, such as in my forearm, they feel sore. My exercise intolerance didn't start appearing until month 6 - until then I was physically active.
Did anyone notice that their symptoms came on after recuperation from a virus? Or after a surgery? These are the two connections I keep coming back to and wonder if there is something there that could help us.
I am new to this forum and wanted to respond to the last question re: onset of vibration sensations. Last March I became very sick with a virus I contracted from my 1year old son. He was sick with a fever and a rash that traveled around his body. This virus hit me pretty hard. Since then I have experienced slight numbness down the back left side of body. This has cleared however, I am now left with these vibrations that start at my feet and travel up towards my pelvis. I too find that they are worse in the evening when I am winding down. So far I have had 3 MRI's and blood work, all coming back normal. This waiting game is more debilitating than the simptoms. I have not been able to post a question. I greatly appreciate everyones respones!
Hi Caroline- funny you should mention a hormonal connection- I am also experiencing these "hummings" and painful elbow area and calf on my right leg- I started taking Tamoxifen as breast cancer preventive (strong family history) and all of this started since then-as Tamoxifen stops your etrogen production i am wondering if a connection to hormonal issues- if you look on the breast cancer forum I have seen a lot of women comment on Tamoxifen usage and joint problems- anyone else experiencing this connect?? thanx !
I guess I'll post also. I as well had that buzzing feeling. I also had my left leg, then left arm and then the left side of my face go numb or tingly. I felt weaker but could still function. Had head MRI-normal (I thank God for that), labs and neuro exam-normal also. This weird buzzing continued for quite a while and then slowly disappeared. The vibration was internal. No one else could feel it. I described it to my doc as a vibration like you get in your feet after roller blading or driving a lawn mower. It is better now but I can still awaken with my legs, arms hands or whatever alseep.If I reposition, the feeling comes back. I also get tingles down my back at various times. My muscles are sore and painful to touch. My neck is tight and cracks when I turn it. The scariest thing that happens to me is that at infrequent times like when I am lying in bed, I will get a tremendous burst of sensation up to my head and down my back and I feel an impending black out like I will pass out or go into a seizure. I have only done this once while driving. I did not pass out but I felt close to it. I rolled down the windows and began to try to move around in the car. That's the worst for me. I can go weeks or even months and not have that happen and then it just happens. I am now gluten free and drink only raw goat milk. I also take vitamins and mineral.. I drink lots of water and stay clear of pop and sugar. I do consume sugar at times but I wish I did not. I also pray alot for God to help me. And He has. I am better and I appreciate that. I think that my neck is off and my tight muscles trap my nerves. The tremor and vibration came on me after surgery also. I thought that when I was knocked out, I was moved around even if only slightly but enough to misalign my spine enough to cause nerve trouble. I felt unnervered all the way home from the procedure. I have not been "right" since. Better but not usual. God bless......
I had my FSH checked when I visited an endocrinologist. It was normal. I don't have any other typical hormonal symptoms, but I am more thinking that this was related to the surgery itself as opposed to the hormone complications from a hysterectomy. There are so many directions to go with this that I sometimes feel overwhelmed at trying to rule out/try out everything.
I have read several places that dental work can cause these symptoms. Also a virus. thyroid disorders. We can't believe the Lyme tests that we get. The B12 malabsorption. Bacterial infections. Antibiotics. The list seems to go on and on. I have been at this 5 months and don't even feel like I have made a dent in trying to single out the cause so that I can get rid of this **** stuff!
To kwag: Sounds very similar. I just don't have that burst of sensation you were talking about. I have read also that gluten intolerance can do funky things. What are the things that you need to avoid in order to be gluten free?
I avoid all wheat, barley, rye and oats. These all contain the gluten in them. I don't know what that burst of sensation is either. It is soooo strange. I does not last long maybe about 5-10 seconds. I move around and it goes away. I was concerned about MS for a while but now I concentrate on NOT worrying. Stress is a killer. I want to avoid it. I sometimes get that vibration in just my arch of one foot or both. It changes. I have learned to live with what happens each day. When I sit and constantly think about what I am feeling, I am miserable. I just try to go on. If anyone finds out what this is, please post it!!!!!
The feelings you describe, pins and needles, vibrations, etc. are indicative of neurological Lyme disease. I have it and went through the same thing. If all of your other tests have come back normal, consider seeing a Lyme specialist. No other doctor, specialist or 'ologist will due when it comes to Lyme. To find one, go to www.LymeNet.org or www.ilads.org.
Here's some info to get you started...(pay particular attention to the symptoms listed under neurological.) You may want to print this and use it as a check list. Email me for more info. ***@****
Head, Face, Neck
Unexplained hair loss
Headaches, mild or severe
Twitching of facial or other muscles
Facial paralysis (Bell's Palsy)
Tingling of nose, cheek or face
Stiff or painful neck or creaking
Jaw pain or stiffness
This is my first time here. I didn't understand a lot of your medical terminology, however what intrigued me was your comment: "continual internal vibration -- slight buzzing throughout my body. Sometimes it feels like the lower half of my face & chin is vibrating - almost to a tickle feeling but really annoying."
I've the same except it always occurs while sleeping and throughout entire body. At times during the day you'd think the calf of my legs enclosed snakes. I'm 52 on disability since age 45 with inner ear disorder, fistula on round window. Just recently been losing feeling in toes & bottom of feet, some on right hand, probably due to mild inflammation of myelin. I have chronic head pains for years lasting only a few seconds here and there but never ending. Vision problems occur with static in the field of vision, in addition to blurriness when concentrating, such as on speed limit signs. Other symptoms are dizziness, loss of stamina for living, driving, etc. yet I'm a very strong Bowflexer.
This all started 12 years ago with an body infection lasting 1.5 years due to cotton placed in a root canal, in the bloodstream. I wouldn't be surprised if a lot of undiagnosable cases here are the result of compromising the natural human neurological barrier. Although I get physically stronger by choice each year, the stamina for leading a normal life decreases; I lie down a lot during the day. It seems like I've had some kind of neurological disruption, and if it's going to kill me with 10 years, I'd just like to know that. So would you.
Are any of you having problems with trembling or jerking at night? It may or may not wake you up. My husband tells me about it. I hate it that I can't get away from this even when I'm sleeping. I'm going to see a rheumatologist next week. I'd really like to keep in touch with all of you, to see if any answers appear. Can anyone suggest an appropriate forum, either at aboutbfs.com or at brain.hastypastry.net/forums/? I think keeping our group together (which will soon disappear here) may be helpful to all of us! I'd really like to hear the results of various doctors' opinions. I'll be happy to share mine.
Yes, I have the clonic jerking also. Like when I am falling asleep. I can have it at other times as well. It's not real big but you can see it. My hopes are that you get well real soon.