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.
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