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tremors during sleep

I'm a 60 year old men, in excellent health, except for experiencing tremors during sleep that wake me up and have difficulty going  back to sleep.  As I start to fall sleep again, I feel these "rumbleling" (tremors) around my upper body.  I immediately wake up again.  These tremors last for about 10-15 seconds after I wake up.  The first time I experienced this condition was exactly two years ago.  It lasted for about four days and it simply went away.  Except for minor incidents (by "minor" I mean I experience the tremors for about two nights and go away) with no major disruptions in my sleep patters.  Last week, however, I experienced another episode which does not seem to be going away.  The first two nights I simply could not go back to sleep at all.  My body wanted to go back to sleep, but, as I mentioned above, everytime I fell sleep the tremors woke me up.  I'm on my  9th day and there seems to be no sign of letting up. I went to see my doctor on the fourth day--He prescribed Zolpidem, which I have been taken since.  Interestingly enough, even under the influence of the sleeping pill, the tremor wake me up, but they are short-lived since I go back to sleep almost immediately.  My doctor said to take the medicine for about two weeks and essencially placed me on a "wait-and-see" mode.  My concern at this point is "how long can I possobly survived on this medicine.  Does any body "out there" know anything about this condition?  As you can immagine, it is extremely debilitating.  I'm, for my age, a very atheletic man who is the right things, no vices and bikes to work every day--About
twenty miles a day.  Married with two grown children.  My job is very stress-free and very enjoyable.  Any ideas?  Thank you very much.
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Avatar universal
So, its been a few months since I have posted and I noticed Toby asking for updates on people. So I thought I would chime in. As I have said previously after hundreds of tests at Mayo Clinic. They diagnosed my tremors as benign muscular fasciculation.

Great... Now what. Well that didn't get much of an answer. It won't kill you and should eventually go away.

As a reminder mine is in the upper chest, and keeps me up all night. After extensive cardiac tests, tests for Lou Gherigs... Etc this benign muscular condition is what they seem happy with.

What I am doing now is taking.5 mg Xanax at night with Melatonin. It keeps me asleep for 6to 7 hours. I am also on cpap machine. This with a magnesium supplement has greatly reduced the tremors. They are there but not causing the anxiety... Fear... And dread I had for months. Waking up in the middle of the night in tears from lack of sleep and major tremors is gone.

I definitely think years of sleep apnea has been a big part of this. And stress adds to it.. But doesn't cause it. I went a week without the magnesium supplements definitely made things worse. So.. While I am still living with it it, it is greatly reduced and doesn't affect my life like it used to. Mayo keeps saying there research says... Eventually... This will pass. Yeah.. Thanks :)

I may try adding niacin as you guys suggested.. Can't hurt. But I swear by the magnesium (and by the way my good work should normal levels of magnesium) and my cpap machine helps. The Xanax just knocks me out.. And hopefully I can wear off that in a few months as I hate a benzo... Even.5 MG a night.

Biggest advice... This is not deadly and there are ways to lessen it. Don't give up.

Also... A sleeping ritual helps... Hot bath... With Epson salts... Herbal tea... Relaxing music... All help.

Take care guys... I'll check in more often.  
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*  Blood work showed normal levels of magnesium
Actually niacin can hurt, temporarily, so be sure to ease into it! I accidentally popped a whole capsule and had a strong flush while driving.
Blood work almost never shows low magnesium levels unless you're *really* low.  Supposedly, the red blood cell magnesium test is more accurate, but still doesn't reflect the amount of magnesium you have in your tissues.
Hey All

I am still having issues. .5mg of Clonazepam at bedtime is my crutch. I appear to be addicted now because if I quit it feels horrible during the day and sleep sux. Low stress over a period of time seems to help lessen my tremors. I am getting back to normal now. Thanks for the kind words b.
I am going to give niacin a try as suggested. Day two so I will report back.
frankieitaluan and toby1101... any updates?
Avatar universal
Quick update - things continue to go well.  Very well actually.  Since starting niacin and in particular adding methyfolate I've been sleeping peacefully.  

I also am not getting up constantly at night to use the bathroom.  More often than not I'm sleeping through the night which in and of itself is a fairly remarkable change.

At this point I'm taking methyfolate, niacin/energy shot and probiotics.  Since adding the methyfolate I've been needing much less niacin.  I've also been paying attention to my potassium intake.  I'm not doing anything specific there other than making sure I get a fair bit from my diet.

Apparently the MTHFR mutation is part of all of this.  I assumed not for any number of reasons including the dr who gave me the test and another dr who is an 'expert' in the field was completely dismissive that it could be the problem.

Clearly it's more complicated than that though because I've had varying degree of success with GI specific interventions as well.  And the electrolyte mix which I can use in lieu of niacin.
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That's good news Mike.  I did some more Googling and it seems that in addition to the whole serotonin/dopamine thing, niacin also has some GABA-ergic effects.  So maybe that's what's helping. I'll add niacin to my ever-growing drawer of supplements and see what that does for me.  My blood pressure is a bit high so it couldn't hurt.

Do you take the niacin before bad or just at some point during the day?
As needed - when I feel a bit 'off'.  Not a specific term I know but unfortunately I can't really describe it better than that.

I hear you about the supplements however I believe trial and error is the path to a solution.

This month makes 6 years that I've been dealing with all of this.  Before this I was healthy and saw a dr maybe once/yr for a physical.  When all of this started I spent a lot time going to drs with essentially nothing to show for it.  I can't tell you how many times I heard 'it's all in your head' or other 'blame the patient' nonsense.

Without an easily defined and medically recognized/acceptable disease it seems our medical system has little to offer except arrogance, condescension and a kick the patient when they are down kind of attitude.  I can't think of another industry that treats it's customers so badly.

There have been a few good drs that I dealt with but unfortunately they were the exception rather than the rule.  
Amen...
Avatar universal
Quick update - a couple of weeks ago I met with the dr who ordered the OAT test.  He was primarily focused on my low VMA and felt that was either indicative of a deficiency or COMT mutation.

His suggestions were SAMe and NAD.  I tried SAMe that night and did not respond well at all.  I took some niacin and that helped significantly.   Since then I've been taking niacin on and off.  I haven't had a lot of time but did a bit of quick research and am wondering about overmethylation.  Seems counter to everything I've either read or been told at this point but niacin in small doses definitely seems to be a good thing.  To much however is not good so it's a fine line which is consistent with what the dr said about methylation supplements.

Someone gave me a couple of bottles of 5hr Energy a while ago.  I just happened across them the other day and read the ingredients.  It had an interesting mix of a number of things I've been experimenting with recently so I decided to give it a try.  I was expecting a negative reaction however it seemed to agree with me.  Ended up buying more but Costco Kirkland brand.  It's only been a few days trying the energy shots but from what I can tell I think it will be good.  Maybe it's the niacin?

Since starting niacin sleep has been quite good.  Same with the energy shots - what I like about the shots is I don't seem to be walking such a fine like with the niacin alone.

All of this is recent and may very well change but I wanted to share.

Also, I'm still talking the probiotics which are definitely a good thing however on the probitoics alone I still had some low level of sleep disturbance.  More probiotics seemed to equal better sleep but not 100% peaceful.  Then I came across niacin/energy shots and while I've found a number of things that have helped to various degrees this seems to be the most effective.
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Yeah, the whole methylation thing is pretty confusing.  I'm heterozygous for MTHFR c677t (I think we've discussed that before). When I first started seeing the functional medicine doc, my homocysteine level was very high at 16. He put me on SAM-e, methylated B12, and methyl folate. Then I think he went to a talk by Amy Yasko where she discussed over-methylation in people with COMT SNPs and he changed to methyl B12 to another form.  I'm homozygous for two different COMT SNPs (which explains a lot about my personality). I stopped the SAM-e a while back because I didn't think it was doing any good and may actually have been causing me problems.  Plus, it's fairly expensive. So maybe that's more of the over methylation thing at work.  Taking the methylation supplements did drop my homocysteine to 10 in a few months, so that's good.

BTW, you can easily test for COMT through 23andme. Even Labcorp offers a methylation profile that includes MTHFR and COMT which (if your doc doesn't want to order it) you can order yourself through services like LifeExtension.

I'm still having a pretty rough time.  Worsening of my symptoms (vibrations and gastro) seems to have coincided with when I started taking the low dose naltrexone. It also coincided with my not being very careful about what I ate during Xmas.  Lots of bread, sugary things, and wine. I wonder if I exacerbated a Candida overgrowth that may have been lurking for a while.

There's some thought that LDN can up-regulate your immune system and if you have some sort of active yeast infection, you'll start getting symptoms. This could explain my increased stomach problems and sky-high anxiety in the morning.

Sorry. I know the LDN thing doesn't help anyone else.  I'm just venting because I'm feeling pretty bad right now.
I should also mention that my functional medicine doc ordered another stool and organic acids urine test which should help to determine whether I do have a candida overgrowth or not.  As usual, I won't be seeing those results for another couple of weeks.
I had my homocystine tested a while ago - was 6.  Dr had no comment/insight other than 'it's normal'.  My understanding is that means I'm methylating properly in spite of being heterogeneous for MTHFR C77?  I really have no idea.

I seem to react badly to many methyl doners - SAMe for example - but well to niacin (at least in the short time I've been trying it) so based on what I understand I must be overmethylating?  And if I follow that thread it could mean that I'm overproducing neurotransmittors and thus ending up with an overactive parasympathetic nervous system resulting in the sleep tremors, etc.  Just speculation based on fitting all of the pieces I have to date together in a way that seems to make sense based on my understanding to this point.

Not sure what to make of any of it. I ordered a 23 and me kit yesterday so in a few months I should have more info.

For the organic acids test I had both Genova and Great Plains done and Great Plains had far more info.  I'm not sure how useful the data is since the recommendation (tyrosine) did not go well at all however if I were to do an OAT again I'd go with Great Plains.

Sorry to hear that you're feeling crappy - hang in there.

Do you have the option of another dr?  I've found with all of this stuff that I reach the limit of the drs knowledge rather quickly.  I stuck with one for a long time and made little to no progress.  Great guy which is why I stuck with him but ultimately I should have been 'dr shopping' sooner.  Now I go to a dr to get info not wanting/expecting a diagnosis/treatment plan.  Not ideal at all but after years of frustration and many thousands of $$$ I feel that I can only count on myself to figure this out.  Not a great feeling but such is life I suppose. The upside is that i seem to be finding things that help and eventually I'll either stumble into the solution that ties it all together or maybe, just maybe find a dr who can put the puzzle together.  Doubtful but possible.

Often wrong but never in doubt - that's how I'd summarize the bulk of my interactions with 'medical professionals' to this point.  Extraordinarily disappointing/frustrating and something I could rant for hours on but I'll leave it at that for now.
Which is why I'm so grateful for this thread (and others) which may be the only way to figure out complex issues like this--at least anecdotally.

Thanks for the advice. Yes, I've been thinking for a while that the functional doc and I are probably at the end of the road.  I'll see what the results of my latest tests are and take it from there.  I'll probably continue with the mold practitioner I'm seeing since I really do have some markers and symptoms that indicate some level of mold toxicity.  Besides, she's a nice lady and will order tests for me at my request.

As to the niacin thing.  If I understand correctly, niacin will cause a net decrease in dopamine (and maybe adrenaline) and an increase in serotonin. So again, if you're COMT deficient resulting in too much dopamine, this could explain the beneficial effects of niacin you're seeing. I haven't tried niacin, but i have tried nicotinamide riboside (another NAD precursor).  Not sure how that affects dopamine or serotonin though.

Did you ever try 5-htp or tryptophan? These should increase serotonin and decrease dopamine.
b-  I weaned off Clonazepam. I had been off it for a long while, but just restarted 1mg. I way overdid sweets over the holidays. It definitely is the go to bridge to get across elevated symptoms.

I am curious to try niacin.

I also wonder if the energy drink is using up daytime energy and causing deeper sleep at night. I would have bet a paycheck that it would have adverse effects on our health issues. Hmm

It is weird that my vibrations and tremors have changed in feel over the last few years. Now it feels like an in sync 2-3Hz both hands and upper back. You could calibrate a clock with it.

There is no anxiety at all. It is moving to fascination. Therefore sleep is no longer affected. I wish people that posted years ago would send updates. Curious if they have stopped tremors or just gave up trying.
I haven't tried either 5htp or tryptophan.  I have 5htp here so I'll probably give it a try at some point.

Since I seem to react badly to methyl donors I watched some videos by Dr Ben Lynch to refresh my memory on all of the MTHFR stuff. In one of them he talks about dairy possibly blocking folate receptors.  I thought that was very interesting since eating a lot of yogurt tended to make things worse (few years ago).  I've had minimal dairy for quite a while now but that always struck me as odd since ultimately I was trying the heal my gut and yogurt was supposed to be good.

At any rate, I decided to add some methylfolate to see what happens.  It doesn't seem to be a bad thing and may possibly be helping.  Tough to say.

I've been taking 400mcg of  methyfolate and someplace around 25mg - 50mg of niacin (breaking apart a tablet and taking a bit as 'needed').  At least for the moment this seems to be a nice balance for me.

It sounds like this may be unique to me but in general I can tell during the day what kind of a night I'm going to have.  I feel a bit crappy if things aren't 'right' and that generally translates to a rough night.

Lately I've found that if I'm feeling a bit 'crappy/off' niacin seems to resolve it and rather quickly - within an hour or so.

I also have the energy shots that I've been using as well - generally just sip a bit as needed - same concept as niacin above.  Although since I added the methyfolate I seem to be needing less niacin.  It's all very interesting.
Are you experiencing any side effects from the niacin like flushing?
No, nothing.
mike, I too was trying to heal my gut when I got a sudden onset of neuro and GI symptoms for a few weeks, which resolved in the lasting vibrations. I was having yogurt, sure, but also I had introduced probiotics and lots of ferments. My theory is that I was kind of succeeding, which upset the balance in the gut and caused something nasty to seek out another place to reside—the CNS. I certainly got a bad case of candida at onset, but there are a range of pathogens it could be. To this day I get recurring sensations as if I have a CNS virus, such as tingles in the neck and face with associated sore gums/teeth.
Sounds just like me except that I haven't succeeded in healing my gut yet
The specific carbohydrate diet (SCD) is proving successful for certain GI issues, if you're able to try something stringent:

https://www.sciencedaily.com/releases/2016/12/161228171130.htm

Talk of "remission" for Chron's & UC is pretty neat.
Thanks ricepeg.  I've been on a moderate protein, moderate fat, low carb diet for a while now including making my own yogurt using the Bravo probiotic.  But nothing as "specific" as the SCD.  Probably worth a try though.
Hi do you guys have any updates? I’ve been on 1000mcg Folinic acid for about three months now and while my symptoms are not gone they are much better. Sleep vibrations have not happened in weeks. I had very low folate high homocysteine, after I found this out I did some research and found the sleep tremors are common among people suffering from anemia, folate deficiency causing megaloblastic anemia.
updates please?
Avatar universal
You mentioned you've been fairly active lately.  Is there any correlation between your level of activity and the vibrations?

-b
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Nope...can't make any correlations these days.  Vibrations just seem to be there in the morning to one degree or another regardless of activity, food, etc.
Avatar universal
So in other words, you're saying the "tremors" are actually real physical rhythmic motions whereas the vibrations are more of a neurological thing that you can feel, but that can't be observed?  Is that right?  I used to have something that felt more like a lower-frequency tremor that my wife could actually feel if she touched me.  Those seemed to happen if I got woken out of sleep suddenly. I figured it was some kind of anxiety reaction.  I haven't had those for a while.

The "vibrations" are higher-frequency and feel more like a light to medium electric current.  For me, the vibrations are controlled by the Tegretol although I sometimes have some break-through vibrations (also around 4:30-5:00 am). However, even though the vibrations are mostly controlled, I'm still waking up multiple times a night with some sort of GI issue that usually included reflux.

A reminder that I have sleep apnea.  I was recently fitted with a dental appliance since CPAP was not working out for me.  The sleep dentist I'm seeing pointed out that sleep apnea can sometimes cause reflux since you create a negative pressure in your esophagus that actually ***** up stomach fluids (sorry for the TMI). I believe that my sleep apnea and definitely reflux and maybe some additional GI issues are part of the problem.

I'll write more later.

-b
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I have apnea too. Do you think that my sleep apnea might be the cause of my sleep vibrations?
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Thank you. So much valuable information here for people suffering. Glad it's navigable again.
Avatar universal
P.S. If you're going to post you might want to log back in to the site first. Otherwise you will be prompted, and will have to get to the bottom of the thread a second time.
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I did get a notification of your post so that seems to be working now, which is great.  I have not posted for a long time, but wanted to let everyone know that the vibrations I felt in my bladder/pelvic area have completely disappeared since I had an infected root canal tooth redone last January.  
I am planning to have an implant done but wanted the bone to regenerate that was destroyed by the infection so I don't have to do a bone graft.  
What I found interesting is the meridian associated with that particular tooth is to the Kidney/Bladder area, which makes sense if that electrical pathway was being disrupted with the infection.
I don't know if anyone else has any root canal teeth or cavitations from extracted wisdom teeth, but if you do, I would highly recommend getting a cone beam scan to find out if there is any infection.  It can detect hidden dental infections much better that regular dental x-rays.
My dental appointment is the 15 Sep so I will let you know how it goes.
That's fantastic! Another success story and line of investigation for others. Thanks for returning here!
ricepeg you are so welcome.  I truly hope everyone will look into any hidden dental infections they might have.  
The vibrations I originally felt in my neck were resolved when I went in for several physical therapy visits after a chiropractic treatment.  
But the vibration in the bladder and pelvic area would come and go at various times no matter how many physical therapy treatments I did until last January when I had my root canal tooth redone.  I have had to do several protocols with a certified nutritionist to try and clear up all of the infection and I am now able to fall asleep and stay asleep for 6-7 hours now.  I am feeling so much better and I hope this will help everyone here as well.  
This is to bring you up to date on my dental procedures.  I had tooth no. 9, my root canal tooth, removed along with 4 other back teeth mostly on the upper jaw.  I also had all 4 of my cavitations cleaned out.  
I am still working with my certified nutritionist to clear up all the rest of the infection that had spread throughout my system from my hidden dental infections.  She is doing this with herbal protocols.
I am sleeping 6-7 hrs. every night and no vibrations whatsoever.  I am dealing with SIBO along with Hashimoto's, but am feeling so relieved to be able to sleep now.
The teeth that needed to be removed did not have any cavities...they just slowly died over the years and then had hidden infections that are much more easily detected with a cone beam scan rather than regular dental x-rays. I have always gone for my regular checkups and dental cleanings, but not to a biological dentist.
Hope others here will find this helpful, too!
Hi iegen, thanks for your post. any updates to the situation.  thanks for your input
Hi specialmom, you are so welcome!

As far as an update, I am still doing herbal protocols with my nutritionist (2 yrs.) and I was able to sleep last night a full 9 hrs.  I have been getting a good 6-7 hrs. each night so I am excited I was able to do 9 hrs. last night. No tremors, no having to get up and go to the bathroom.

I have not had any tremors for quite a long time now.  I can't help but feel they were being caused, in my case, from these hidden dental infections, which may have also caused my Hashimoto's (autoimmune).

Hopefully, this will be helpful to you. Would love to hear how you are doing.  

more updates please? x
have you been ok with implants?
Avatar universal
Well, this is a first. I can induce my vibrations by listening to certain low-frequency tones in earphones. It takes about a second or two to start, and stops immediately as I stop the sound. I can feel it in my face and neck quite palpably, and also down through the chest.

This one, for example:

https://www.youtube.com/watch?v=UQLyBj2TCuc

One audio clip that does the same for me says its tone is 1.8hz, which is in the theta range related to light sleep. But I really don't know what to make of it yet, and haven't had time to research. I suspect it's not brainwave entrainment, although I am very open to sleep deprivation as a cause. It could easily be a dysfunction of the ear (My tinnitus is not pulsatile, however. It's of the ringing kind.) Weird though.
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Very interesting. Do you need to be lying down trying to sleep to get this effect.  Or does it happen regardless of your position?  I just tried it at work while standing at my standing desk and didn't get any vibrations although it might have made me feel a little uneasy.
BTW, a quick Google says that delta waves are between 0.5 and 2 Hz and theta waves are between 6-10 Hz. Delta waves are associated with deep sleep (a/k/a slow wave sleep or stages N3-4). Theta waves are associated with lighter sleep (stages N1-N2). So it seems like what you've been listening to are Delta waves associated with deep sleep.
This happens when I am sitting upright, so doesn't require me to be lying down, no. Another frequency gave me what I think is a more moderate version of the same thing: less frequent facial muscle fasciculations (1-2 per second).

I don't consciously feel anxious when I hear the sound. And I don't think it represents a sudden, loud sound that triggers PTSD sufferers. Perhaps, though, it's a dysfunction of that reflexive hammer designed to close the eardrum to sudden loud sounds. Years ago I wondered about that because I had hyperacusis, but it has mostly resolved. On one occasion I did hear that pulsatile tinnitus talked about here, while I was hypnogogic, so it's just possible that I have it while sleeping without being aware, and that it is perceived as a traumatic event during sleep, leading to a PTSD-like response. I did listen to a recording of my snoring in case that induced my tremor, but it didn't (but of course my actual snoring is also an internal vibration).

Here's the detailed summary of my experience with vibrations:

A year or so before my onset of this problem, I was going through a period of stress and anxiety, and I noticed infrequent electrical vibrations while falling asleep, and a bit of neuralgia on top of my head and on my face. It passed. When the present condition came on, I initially fainted (very likely a vagal response) and experienced a rapid and overwhelming onset period for a few weeks, where my CNS felt like it was plugged into a car battery; this moved progressively to different locations of my body each day and was more pronounced when lying down for sure, until it resolved to a much more bearable level, roughly where I'm still at a year later. During that period I also had inappropriate tachycardia, and in combination with high nausea it got so bad on one occasion that I went to hospital. Both could be explained by autonomic dysfunction, and the nausea could also be explained by the adrenal fatigue theory.

My daytime tremor/vibration is at a subtle 5-10% level in the mornings. Around mid-afternoon it goes to about 20-30%, and then in the evenings around 50%. If it jumps higher I will tend to rapidly tap the back of my neck with my fingers and it will cut out entirely, until shortly creeping back in. I used to be able to tap my forehead, but this isn't sufficient anymore. I can also feel nauseous in keeping with the level of tremor, and it gets worse with caffeine. I found an OTC anticholinergic that seems to cut the tremor, although I need to complete my testing of that to be sure (if I can successfully cut the tremor that way I'll also then experiment with the sound and with being horizontal, to learn more).

As far as I can tell, my sudden onset experience and my daytime vibrations differ from everyone here, although one or more here mentioned daytime vibrations early on for them. But my pre-onset phase, which went away, shows me that I could have ended up here gradually even if I didn't have the dramatic onset experience.

On top of all that, I have what you all seem to describe, in terms of a phenomenon lying down and falling asleep, and then during waking up, which quickly dissipates. In the mornings the activity is localized in my diaphragm area, although I feel tingly neuro issues all over as an effect. While falling asleep, it used to be in my upper body but now it's commonly in my lower legs most noticeably. (I also have restless leg.)
Yes.  What you've described is definitely more complicated than my situation. However, it does seem that everyone started with some sort of physical/emotional stressor. I wonder if a *short* treatment with a benzodiazepine might break some sort of cycle with all this. Maybe that's part of what helped Toby.  What is the OTC anticholinergic you tried?
It's Travacalm, which contains both Dimenhydrinate (50mg) and Hyocine Hydrobromide (0.2mg).
Ah OK.  Similar to Dramamine.
Avatar universal
Here is a completely different idea based on ricepeg's neuro's hypothesis that the vibrations are a symptom of some sort of PTSD. There is something called Dynamic Neural Retraining which is supposed to help you re-wire your limbic system to, among other things, deal with the symptoms of PTSD. I'm looking into this now.  Google it if you want to know more.  Attending the program is a bit expensive, but you can also get the program on DVD. Just a thought on a different line of attach.
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I have looked into something similar from Ashok Gupta. It's on my list of things to try, and I can see it possibly helping.
Avatar universal
Update:  I had some Tegretol (Carbamazepine) left over from the last time I tried it so decided to try it again. At just 200mg (which is a very low dose), my vibrations completely disappeared.  However, I'm still waking up a few times during the night, but without the vibrations and accompanying anxiety. Tegretol is an anticholinergic and a mood stabilizer so both of these properties could be helping me. This says to me that the vibrations are a symptom, but not the cause.  No surprise there. I don't like these types of drugs, but IMO it's better than a benzo and again, this is a very low dose.

I've also been continuing with the alpha lipoic acid so maybe this is helping as well.

I've been reading a lot lately about the psychological/neurological effects of sleep disordered breathing (e.g. sleep apnea) and I can easily see how untreated or insufficiently treated SDB could produce the type of symptoms we're experiencing. Some of what I've read supports the PTSD hypotheses that ricepeg's neuro came up with.  I'm going to try CPAP again in addition to my dental appliance to see what happens.  I'm also going to visit the sleep neuro I saw a while back to see if she might have any additional insights/suggestions. I'm not very hopeful on that front.

Regarding the acetyl-l-carnitine (ALCAR) and palpitations.  I found a couple of posts where people were complaining about this.  One person said that she realized that what was really happening was that the ALCAR was causing reflux.  Reflux/GERD can result in heart palpitations (as it did with me a few years ago).  She took an OTC acid reducer and the problem went away and she was able to continue taking ALCAR. I suppose it's also possible that the acid suppressor was interfering with metabolizing the ALCAR. I've long wondered whether my reflux issues could actually be causing the vibrations (or at least the wakenings that cause the vibrations) as well.  So this all seems to fit...sort of.  I may start taking a PPI (although I don't like those medications either) for a short while to see what happens. Note that some forms of SDB can actually cause reflux by creating a vacuum that sucks up stomach acids.
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Wow, that's great. I'd be very interested to know if you've continued to have success with Tegretol. I plan to try natural anticholinergics if I can find any. Regarding the mood stabilizer effect, I have definitely had a change in my emotional regulation that I associate with this condition. I will shed tears while watching television, etc., where I wouldn't do so before. It could easily just be the drain of the condition, but I also wonder whether it could be causal.
I don't think it's causal.  This condition is very draining.  In general, when I've had a bad night, I'm a wreck the next day.
I agree 100% with feeling like a wreck the next day.  Generally, the worse the vibrations the worse I'll feel the next day.  For me the vibrations are more than a sleep disruption - they seem to be a symptom of some else that's going on.
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I haven't checked in for a while because I haven't had anything new to add until recently.  My tremors have been minimal to moderate and only in the last 2-3 hours of sleep.  So basically what they have been for quite some time now.

I followed the methylation thread to every possible end and in summary methylfolate is a good thing.  Same with folinic acid however pretty much anything else that is a methyl donor doesn't agree with me.  

After several false starts looking at other things I focused again on ammonia.  Yucca has consistently been a good thing.  A while ago I added L-ornithine and that was a good thing.  Then a couple of weeks ago I added carnitine fumarate.  L-carnitine resolved my tremors but gave me wicked palpitations.  I was hoping the fumarate version would be better and it seems to be.  Resolved what little tremors were left but I did get minimal palpitations.

GI bacteria are one of the causes of ammonia (which would explain the GI connection) so I decided to try adding FOS and VSL3 (probiotic).  I tried VSL3 before with minimal results but with FOS this seems to be a very good combination for me.  My tinnitus is 1/4 of what it's been and I've had no tremors at all that I'm aware of in spite of slacking a bit on the ornithine/carnitine/yucca.  To me the decrease in tinnitus is as telling as the tremors themselves since the 2 are definitely related for me.
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Quick update - to test my theory of ammonia, FOS & VSL I didn't take anything else yesterday (yucca, etc) and this morning woke up with moderate tremors.  So FOS and VSL on their own aren't enough.  I'm taking yucca, ornithine and carnitine fumarate again today so it will be interesting to see what the next couple of mornings are like.
Quick update - to test my theory of ammonia, FOS & VSL I didn't take anything else yesterday (yucca, etc) and this morning woke up with moderate tremors.  So FOS and VSL on their own aren't enough.  I'm taking yucca, ornithine and carnitine fumarate again today so it will be interesting to see what the next couple of mornings are like.
Avatar universal
Things continue to go well.  Sleep is peaceful.  I've upped the amount of methylfolate to 800 mcg from 400 mcg. At the 800mcg level I haven't had the need for niacin or anything else.  So it's looking more and more like MTHFR is the root cause of things.

Out of curiously I bought some TMG (betaine) because I'm still trying to figure out why the betaine HCl helped.  Betaine is a methyl donor and based on my negative reactions to other methyl donors (SAME in particular) the HCl should not have been a good thing.  But it was. The TMG agreed with me however since things are pretty good these days I can't make much of a judgement.  But it definitely wasn't a bad thing.  

It's been almost a month since I started taking methylfolate so a this point I believe this is the solution for me.  I also feel better all the way around.
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So, while I'm certainly not saying that we're all suffering from a panic disorder, I did recently run into this statement in a post about panic disorders:

"One line of current thought is that people who are prone to panic attacks are hypersensitive to small changes in their bodies’ biochemical milieu. An example of this is the way in which people respond to carbon dioxide (CO2) in their environment. Everyone’s brain monitors CO2 levels (subconsciously) to detect levels that are high enough to indicate the potential for suffocation.* Researchers have shown that in normal people, there must be a sizeable change in CO2 levels to set off this suffocation response; in people with panic disorder, however, even an insignificant rise in CO2 levels can trigger a full-blown panic attack"

So what if there were something else that caused hypersensitivity to CO2 changes?  This would account for the feeling that some of us have that we've stopped breathing or are breathing poorly.
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BTW, I should have mentioned that that statement was from an article on the use of 5-HTP to treat panic/anxiety disorders. So I'm going to try some 5-HTP and see what happens.
I really like this line of thought. I am currently reading a book called "The Oxygen Advantage" that says most people are chronically overbreathing, and that results in poor oxygen delivery to tissues throughout the body, including the brain. It causes anxiety and a chronic fight-or-flight response in the body. It has to do with the body's ability to tolerate high levels of CO2. The higher levels of CO2 tolerated, the better for oxygen delivery. The book gives exercises to increase one's oxygen delivering capacity. I've not reached that chapter, yet, but I believe this may be important for at least some of us, because I do have a feeling of frequent brain hypoxia, like, I can't even blow on my kids' hot food without feeling like passing out. And it's not from being overweight or out of shape, I don't think, because I'm thin, and because I can do aerobic and other exercises and not have any feeling of near syncope or difficulty breathing. You can see if this is your problem by assessing your "BOLT score", which is done by holding your breath after a normal exhalation (so essentially not breathing when there's no air inside you) and counting how many seconds until your body reflexively makes muscle movements to try to get air, or until you are really feeling the need to breathe again. My BOLT score is 12. Average is 20. Healthy is 40. I'll do the exercises in the book and report if it helps the tremors.
Very interesting. My score was 22.  Yes, please report back and let us know whether the exercises help you.
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I have an interesting and somewhat surprising update.  As I stated in my last post I wanted to get back on an 'even keel' after my trip before trying anything to do with neurotransmitters.  As part of that I started taking a probiotic that I had leftover from a couple of years ago when I was focused on my GI.  

I stopped the licorice root which was the only thing I was taking.  Stopping the licorice resulted in the vibrations returning at a light to moderate level (my 'normal' at this point in time I believe).  However, once I started the probiotic the vibrations diminished to the point of being barely noticeable.  I believe I can correlate the vibration intensity with the amount of probiotic I take.  For example if I take the probitoic 2x per day my vibrations seem to be more noticeable than if I take probiotic 4 or 5x per day.  This wasn't part of an experiment - just life getting in the way of taking the probiotic as planned.

It's only been a week so there's still plenty of time for this "solution" to fizzle out but I wanted to share the info.  I'm using a 12 strain, 20 billion/capsule probiotic.
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Just prior to onset I had been taking probiotics from multiple sources and comsuming new fermented foods. I then had intense lyme-like neuro symptoms for a few weeks, which resolved in the ongoing vibrations. One theory is that I had upset my gut biome, and released a CNS-loving pathogen via a leaky gut. I certainly got candida bad the same day as the neuro symptoms started (so, there must be some correlation).

I'm starting to introduce probiotics again. Why product or strains have been helpful so far?
*which
Avatar universal
Hmmm.  The whole 4-5am thing is interesting too.  In various other Googling I've done, that seems to be the magic timeframe for people who have sleep problems.  Maybe that's just when we start to cycle out of deep sleep more frequently.  Everyone wakes up periodically during the night.  Maybe we just notice it more because of the vibrations which then tend to keep us from going back into deeper sleep.

-b
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I am still on the Lunesta and at the least it gives me sleep. But the vibes start the moment I get up.  They have me wanting to transition to tamazapan.  Mayo has run many many tests. Bi answers. Going back to Nero and another nerve test. They say that's it.  If not they just treat symptoms.  I still can't get over its not heart.  It felt like it for so long. Definitely some kind of muscle spasms. Can't believe we all can't figure this out. Some seem to have controlled it but not one answer for all. But I keep reminding myself.. Its obviously not deadly. So I can deal. Hang in there brothers
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Wanted to check-in, provide an update and see how everyone else is doing.

About a week after my last post I started getting mild vibrations starting around 5AM or so and lasting until I got up.  Mildly annoying at worst.

Prior to starting the HCl I was having tremors - to me those are significantly different.  I define tremor as a rhythmic motion.  Those were significantly more intense and the more intense the tremor the worse I would feel for the 1st few hours of the day.  Longer if the tremors were intense.  A hangover is the best way I can describe it - the intensity of the "hangover" being directly correlated to the intensity of the tremors.

With the vibrations I always wake up feeling fine.  So to me while the shaking part may be somewhat similar they do seem to be quite different animals.

As far as I can tell nothing changed between sleep being peaceful and the start of the vibrations.  They started very slight - wasn't sure if I was having any type of motion or not - and got a bit more intense.  I can now clearly notice them but outside of being a bit annoying I'm not having any type of issues.

That being said, it's obviously not "normal" and I have to assume that my body still isn't 100% happy with something.

I still believe it to be nutritionally related.  I believe the addition of the HCl allowed for better absorption which eliminated the tremors.  Why the vibrations started is beyond me.  Maybe the addition of the HCl favors absorption of something at the expense of something else?  That's my best guess.

I'm paying attention to things but am not being strict in any respect.  To this point I cannot correlate the vibrations to anything diet or lifestyle related.  

I've continued with the HCl as described before and that's pretty much it.  I've experimented a bit with some of the other things I have here but without any real success.

As I write this I'm wondering if reducing the amount of HCl may make a difference.  Too much somehow creating a different imbalance or "over-correcting"?  I'll give it a try and post results.
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Hello everyone. Does anyone have an update on their status? Since this is an old thread, your health evolution is valuable information two others who are experiencing sleep vibrations now. I would love to see you post health updates here, whether they are good or bad. The others reading this will also need to know whether you eventually got a firm diagnosis, and whether you ended up having an underlying health condition that was not apparent when you first posted here. Thank you so much! Personally, I have been experiencing sleep vibrations since 2020.
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Great info as always Mike. Maybe I'll give the copper a try and see what happens.

One thing that continues to be different in my case is that I'm still clearly having some GI issues. Pretty much without fail, when I'm woken up during the night I feel like I'm having some kind of heartburn. I had a pretty bad bout of this a few days ago and I thought maybe I was overdoing it on the HCL supplements, but it also could have been something I ate. I had a sort of big lunch that day that contained breaded pork which may have disagreed with me for some reason. I remember a few years ago the first time I had a massive GI problem was just after I ate some store-bought fried chicken (which I love).  I was in pain for days after that...  So maybe it's a gluten thing although I've fairly careful (except for that one lunch recently) about staying away from gluten.

Thanks once again for sticking with this Mike even after you're feeling better.

-b


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Well it's nice to find a thread with similar symptoms to mine,  and also disappointing that so few have had good results.  My tremors or spasms began 3 months ago.  Happens about 10 min after lying down.  Either to sleep or a nap.  Keeps me up all night. Tremors center in my chest and back.  Fingers tingle as well.  Very similar to all others here I have gone through every test around.  Cardio ok.  Endo ok.  Neurology ok.  Gastro ok.  Only thing they discovered was severe sleep apnea. Been going to mayo .  On propranolol and Lunesta for sleep.  That helps somewhat .  Tried herbal supplements as well.  I am surprised with all this time on this subject there are so few answers.
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Welcome Frankie.  Yes, your symptoms sound all too familiar.  Sleep apnea also seems to be a thing for some of us.  What was your AHI?  Are you using CPAP now? I tried CPAP for a while (I have moderate sleep apnea, AHI=15), but it didn't work out for me. I'm going to see a dentist in a couple of weeks to be evaluated for a oral sleep apnea device. So does the propranolol/Lunesta combination stop the tremors or does it just let you get a bit more sleep, but you still wake up to the tremors?
My AHI was 85 so severe apnea.  I would say that the combination of proponolol and the Lunesta just get me through the night.  I wake-up and feel them. But at least I can sleep and function the next day.  Got back from Mayo today and got a script for Elavil which seemed to have helped the original poster of this thread. So trying that tonight.  It's a weird weird condition that seems to stump the best doctors.  I mean the good side is it isn't deadly,  the bad side is is it disrupts one life.  I hope to get to the bottom of what causes it but also can deal with it if I can control the symptoms. They scheduled me for x-rays and a back mri ans well as an EMR to test the muscles.  I think it is definitely muscular and a spasm of some sort. And agree with all of you that diet and stress aggravate it.  But it is definitely physical and not psychosomatic I'm origin.  Mine came out of the blue.  I suggest you try cpap again.  Both my neurologist and cardiologist feel that apnea may be the root cause of it. They know so little of the effect of apnea on the body.  Hang in there. Again it's somehow reassuring to know others have this. And remember as bad as it feels... It's not cancer... Its not parkinsons... So we can get through it.  
Frankie, do you have any of the other symptoms some of us have been experiencing: tinnitus, clicking sound in the ears, GI issues?
Had clicking sound in ears.. That went away.  And yes on gi issues. Rumbling etc.  Endoscopy found nothing
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Glad the clonazepam is giving you some relief Toby.
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So I have been on clarazapam for a couple weeks now. It doesn't fix tremors but looking at my Fitbit sleep I went from waking or agitated sleep 15-25 times to one 3-5. I still tremor but now not near as many times. Very little side effects. I like the confidence enhanced feeling too. Not sure how long my liver will like it though. I am only on 2 mg per night. Once you take the pill you have about 1-2 hours then it is bed time.
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I would like to see this thread resurrected. Some of us may be have further insights to share with others.

I am not sure if anyone will see this, but I have found a practical way to get to the end of this long thread without having to manually click through each page. Here's what works for me, at least in Chrome browser on a desktop computer. I simply type CTRL+F to search within the page, and search on the phrase "have an answer". This jumps to the bottom of the page, which automatically keeps triggering the page loading script until the thread is fully loaded. It takes a couple of minutes, but you don't have to watch it and can switch to other browser tabs. At that point the site functions normally without issue. If you're seeing this at all now, you're probably someone who has already clicked on "Notify me of new activity..."

Instead of "have an answer," alternatives that work are "notify," "respond," and "new activity."
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I have been able to confirm that hooking the back of my neck up to a TENS machine enables me to instantly kill the internal vibrations with the click of a button.

I decided to try this because, as previously related, I can achieve that effect by tapping my fingers on the same area.

I decided to go to sleep with the machine attached so I could experiment during waking up, when the diaphragm area is vibrating the strongest. I did have vibrations in my legs as I lay down to sleep, as is fairly typical, and was able to kill those with the TENS. The vibration is occurring, I start and stop the pulse, and the vibrations have completely stopped. This was also the case in the morning with the chest tremor.

I don't know the frequency (it's a cheap machine), and don't think it matters.  I don't know if it's the electricity per se, or the way in which it vibrates muscles (as the finger-tapping would), in turn presumably jolting a nerve (vagus?).

Given this interesting result, I'm going to run the machine periodically in case it serves to stimulate the vagus in the manner of possibly being therapeutic.

It's also got me focused more on the ways in which my vagus nerve might have become irritated, including postural issues leading to reflux (hernia?) and also chronic pressure in my neck, which bends to the right. It may be that the thing that unites us all is irritation to the vagus nerve, even though this could occur in multiple ways. I am still struck by the fact that Toby also experienced what I did with the vibrations being triggered by listening to a certain tone. I also want to just note here that a woman on this thread got over the vibrations after discovering a slipped vertebral disc in her neck, or something along those lines.
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Wow.  That's exciting news ricepeg. I received my TENS unit last week, but I haven't gotten around to trying it out yet.  I bought a set of ear clip electrodes and was going to try tVNS via the ear as described in the Nemechek protocol, but maybe I'll just try the normal electrodes on the back of my neck first.  I definitely have neck problems (which I may or may not have mentioned before) and I've started seeing an Osteopath for that.  This treatment hasn't helped all that much yet, but at least she's more open to some of my theories about the vibrations and the vagus nerve.  I also purchased a  traction device (which I also haven't tried yet) to see if applying mild traction to my neck might help.  Just need to get over the fear of experimentation...

Here's some more interesting reading:

https://www.sciencedaily.com/releases/2019/02/190213142700.htm

-b
Thank you for sharing that! I absolutely think this has something to do with vagus nerve and/or diaphagm and/or stomach/hiatal hernia issues. I had bad gastritis (I assume that's what it is) last week and the vibrations really kicked into high gear during that time, jolting me out of sleep worse than I'd experienced in months. I also get increased tremors when I take Vitamin B12 supplements, so now I'd like to figure out what B12 has to do with vagus nerve and stomach stuff.
skboren, I believe that my reflux/hernia problem was brought on by way too much sitting at the computer. I realized that I also had a chronically tight psoas while standing up, so the other day, throughout the day I consciously tried to let this go, and let my stomach hang out all the way. I think I had long been subconsciously pulling my stomach in, for aesthetic reasons and just believing that this was healthy. In any case, letting it all hang out led to a bunch of sudden “proto-coughs” or gasps that I associate with a hernia sliding back down. I did this knowing that I had had a few days of worse reflux and was being taken to a smorgasbord restaurant for my birthday. Despite all the food, I had a 100% reprieve from reflux that day, which surprised me and made me determine to keep working on this technique and improving posture.

On B12, the vagus aids in digesting B12 from food by stimulating the stomach to secrete intrinsic factor, so a malfunctioning (or severed) vagus can lead to B12 deficiency. This is a wild guess, but it may be that if your supplements aren't being so absorbed, they may end up causing irritation to further exacerbate the tremor. I think I may get a similar exacerbation from eatings lots of carbs (as you earlier mentioned), and B12 is needed for metabolising those, so there could be something to the B12 deficiency thing. Perhaps sublingual B12 could help, per this person's experience from another forum: "Since taking daily sublingual B12 my lifelong inherited symptoms of heartburn, bloating, constipation have all disappeared and also my breathing, swallowing and anxiety issues have all but gone. I tried coming off B12 for 2 weeks and all my problems returned. I am now taking 2500mcg liquid B12 twice daily. I think all my symptoms are linked to the vagus nerve. My sister gets 3 monthly injections but her symptoms return before her next jab. I am ifab negative with first B12 level 164 and second 236, doctors are not treating me for B12 deficiency as my levels are 'normal'. I have to sleep with 2 homemade sleeves to stop me wakening with numb hands (it works) and hoping that my nerves will someday repair. I have lots of other b12 related symptoms."
b, thanks for the link. Interesting. It's good to know that "active 20V nVNS positioned directly over the carotid artery results in electric field penetrance that activates the vagus nerve." I've read elsewhere that the carotid should be avoided with TENS (along with the heart), so it would be worth proceeding with caution. Their max voltage was 24V. Their sham position of "far lateral" seems to be closer to my experiment, either side of the back of the neck. Not sure of my voltage, but it was lowest setting of a cheap TENS machine. I figure that while this works in this position to cut the tremor like an off switch, active therapeutic stimulation would need to be done cautiously over the carotid. By the way my method to secure the TENS was to remove the gel pads and use kinesiotape directly over the metal electrode clips. This can be more painful as the charge isn't spread out over the gel, but it is guaranteed to stay in place through the night. In hindsight I could probably tape on the gel pads.
A few things come to mind (in no particular order):

- There are some theories that if you're deficient in B12 (and other B vitamins) and you start supplementing, you could have some nervous system issues when you're nerves "wake back up."

- Sitting at the computer:  I'm the same and so I now have an adjustable standing desk at work that I can use both while sitting and standing.  I make sure to switch between the 2 positions periodically during the day.  I also get up and go for a short walk about every 30 minutes.

- I've been trying a transdermal multivitamin patch from a company called PatchMD.  I haven't had any tests in a while so I don't know precisely how the patches have affected my vitamin status.

- Recently, I started exercising more (mostly because it's now warmer in the NorthEast US) and my vibrations and sleep in general have gotten worse.  Maybe I've irritated my vagus nerve by exacerbating my hiatal hernia or my neck problems? I'm now once again having feelings like I'm experiencing central sleep apnea. This gets me to start obsessing over whether this is indeed central sleep apnea caused by some vagus nerve dysfunction.

- I did a TENS treatment on my neck muscles a couple of days ago, but didn't see any affects on my sleep one way or the other.  I haven't tried this *while* I'm having the vibrations yet.  I also haven't tried tVNS via the ear yet.

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I just finished a book by a Dr Nemechek who has developed protocols to treat autonomic nervous system dysfunction. (I believe that the sleep vibrations are a symptom of ANS dysfunction). His book is primarily concerned with his protocol for autism, but it can also be applied to ANS dysfunction which he believes is due to systemic inflammation. The main parts of his protocol involve treating Small Intestinal Bacterial Overgrowth and lack of Omega-3 fatty acids. In certain cases he also prescribes transdermal vagus nerve stimulation. Many of the symptoms he describes resonated with me and I may look into seeing him at his clinic near Phoenix, AZ.  

I highly recommend you get a copy of his book (it's a quick read) to see if anything resonates with you.  Just do a search on Nemechek Protocol.  You'll find his blog and a few videos.  If you search hard enough, you can also find a description of his protocol. He also has a quick checkbox test to see if you fit the criteria for ANS dysfunction.  I checked many of the boxes.
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Thanks. I have actually watched and read some Nemechek stuff, also. I can't do fish oil, it gives me bad histamine intolerance reactions. But the vagal nerve stimulator device he uses looked really interesting. If you go to AZ and pursue that, please do report back! I agree that we seem to have some autonomic dysfunction going on.
Nemechek feels that most histamine reactions to fish oil are due to "bad" fish oil. The histamine reactions are actually due to the histamine produced by bacteria in the fish oil as opposed to the fish oil itself.
Has anyone had their glycene level checked?
Helpful, thanks b. Early on, I was diagnosed with ANS dysfunction by a cardiologist (at that time I had spontaneous tachycardia), and with SIBO by a naturopath. I continue to experience the sense of very active production of intestinal/stomach gases (leading to belching and reflux). This is one symptom that clearly arrived with my sudden onset, and has stayed with me. If you recall, I had been gung-ho with various probiotics and ferments, thinking I was combating candida, and I had stupidly just taken an NSAID on an empty stomach (I'd hardly ever taken those so was ignorant in that regard, and this was the third day in a row of my three-day test). I was intending for this to combat perceived inflammation. Essentially I felt an issue in my gut and soon fainted. After that, the candida went rogue into my mouth and genitals, and I believe probably other pathogenic gut bacteria also went rogue, giving me SIBO (and possibly set up shop wherever else it could get to). A couple of weeks of adrenaline spikes and weird electrical sensations ensued, before resolving into something more on the level that is commonly described here. Incidentally, although I trace my issues to this dramatic onset, I also had experienced some of the similar buzzing while falling asleep about a year prior, during times of stress. Likely, whatever I had then at a low level suddenly got a whole lot worse, and then somewhat improved but never went away.

Just rehashing this because yes, in my case as well, the Nemechek model would make perfect sense. Something "active" in my gut is clearly involved, and I have certainly had symptoms of autonomic dysregulation. I'm off to get me some good fish oil and some Nemecheck info.
This all "fits" ricepeg.  Probiotics and ferments can be exactly what you *don't* want depending on what is actually wrong with your gut.  Although whether probiotics (and probiotic foods) are contraindicated with SIBO seems to be a matter of some debate.  Which seems to be typical for just about anything having to do with the gut these days.  I think that one of us (maybe it was you ricepeg) saw a neurologist who wondered whether this was some type of PTSD.  I wonder whether these kinds of significant health "events" have caused some kind of PTSD which can also be associated with dysautonomia.

Beyond that SIBO and Candida can cause malabsorption which can lead to vitamin deficiencies (which I apparently have) which can lead to all kinds of neurological issues.

Now for the bad news.  I started on a good brand of high DHA fish oil at high dosage and it may have kicked off some significant anxiety. It's always hard to tell with me.  But I have seen posts from a number of people and one case study that indicate that some people have a problem with fish oil.  It's never easy...

I see my functional medicine doc next week and I'm going to ask him if he's willing to prescribe  a course of Rifaximin without making test for SIBO.  Although I was also once diagnosed with SIBO, I'm not sure that the tests are accurate.  At this point I feel like I just need to try things based on hunches rather than testing. It's going to be an expensive experiment as Rifaximin is not covered by insurance and will probably run me over $500 for a 10-day course.
Have looked into Dr. Nemechek some more and am further encouraged to pursue it. His model accounts for the GERD-like symptoms as well.

My experience with being able to stop my vibrations abruptly with a tap to the head or back of the neck, and with the vibrations able to be induced any time of day by listening to a certain musical tone, strongly implies an autonomic dysfunction to do with the brain and vagal nerve signalling.

So I'm starting on the olive oil and quality fish oil (after understanding and accepting the reasoning for both), and am sourcing some Inulin while also planning to seek a prescription of Rifaximin (a unique antibiotic able to target SIBO, routinely prescribed also for treatment of traveler's diarrhea, including in advance of travelling abroad just in case it's needed–I do travel so I think this shouldn't be too hard to request). I'll probably just hold off for a few weeks on the Rifaximin however, which seems more of a nuclear option on the SIBO. Would like to give the other elements more of a chance to lay the groundwork. Once taken, though, I would hope to see a reduction in GERD symptoms. Then if the SIBO is in the causal pathway of the vibrations, then I suppose there would be some new hope that they might resolve. Dr. Nemecheck mentioned that around the age of 40-45 is when the scales seem to tip towards needing the vagal device to help in recovery.  I'm 44, so have no real sense of that either way. Since in all our cases the vibrations seem to be able to improve, even completely in Toby's case, then perhaps the stimulation device wouldn't be needed by any of us (assuming that Nemecheck is on to something in our case).
Sounds like a plan ricepeg.  My functional medicine doc agreed to prescribe Rifaximin as an empirical test for SIBO.  In the US, Rifaximin is pretty expensive and health insurance typically won't cover it unless you have IBS-D, which I don't have.  So I'll have to pay for it out of pocket. But I'm willing to do that and go for the "nuclear option" at this point.  I still have some lingering digestive issues (including malabsorption as diagnosed by my functional doc) so this seems worth it at this point.  

I'm still toying with the idea of going to see Dr Nemechek, but I'm going to try the above first.  I'm seeing 3 different practitioners right now not including my GP and even though my interactions with the alternative medicine practitioners have been pretty positive, I'm just so tired of it all...

BTW, you can find instructions online for making your own transcutaneous vagus nerve stimulator including some mention of the settings Dr Nemechek uses.  Search for "make your own vagus nerve stimulator healthrising" and/or "make your own vagus nerve stimulator phoenixrising"

Please report back on how you're doing on this protocol.  I'll do the same after I do my course of Rifaximin.
More info on vagus nerve stimulation and PTSD
Oops.  I had meant to include a link in my comment of Feb 17.  Now I can't remember which link that was.  Sorry...
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How is everyone?  I am doing ok. Still no tremors, but experiencing memory issues. Sometimes my mouth doesn’t seem to work right. My face feels tight. Not sure if it is related.
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I'm glad you are ok. I'm sorry about the memory issues and mouth and face. I can relate to memory issues, those began for me maybe two years ago. Mouth not working right I can also relate to, as I feel like when I chew food, my chewing is uncoordinated. It feels as though I'm about to bite my tongue. And in fact I do bite my tongue more often. I also feel a lack of coordination descending stairs. I'm not sure about the face feeling tight.  You mean the skin of your face? Or the muscles?

I have not posted in some time. I still get the tremors, though if I keep carbs low they improve. Too bad I cant keep carbs low and maintain energy! The other surprising factor that affects tremors that I've discovered is vitamin B12! If I take a B12 supplement, or eat something particularly high in B12 like beef liver or kidney, I get bad tremoring for the next day or two during sleep. I cannot fathom why, but it's very consistent.
The B12 connection is interesting.  I'm not sure whether I've experienced that or not.  B12 can certainly be stimulating so I wonder if we're all just very sensitive to any kind of stimulant which results in increased tremors. If you poke around phoenixrising.me a bit you'll see some theories that supplementing with B12 when you've been low in B12 can ramp up methylation to a point where some people experience symptoms (neuropathies, anxiety, etc) due to sudden increased energy production.  You might try supplementing with vitamin B2.  I can't explain that carb connection unless this too has to do with sudden increased energy production.
Thanks. I actually do take B2, three times a day, 25mg, for migraines, and it helps hugely. I've been doing that for a long time, now. It doesn't seem to help me tolerate B12 any better. I am experimenting with lithium orotate, since lithium is supposed to help with B12 utilization, and I've done hair mineral tests that always show undetectable levels of lithium, indicating that I need it. Too early to report results on that. I'm glad you've got  no tremors....that's something! I can sure relate to the memory issues, and I'm only in my mid 30s. Super frustrating. I do believe we can heal from all of this. The solutions are out there.
My face on one side is chronically tight, both in the jaw muscles and further around towards the nostril, where I believe it affects sinus drainage. I do periodically bite the inside of my mouth (mostly left). This is all because my jaw is lopsided, and hence I have right-side ear pain and TMJ (and tinnitus). And that's because my head is lopsided, with a lot of right-side neck tightness and some shoulder issues. And so the compensations keep going downwards, affecting the positioning of my rib cage, breathing muscles, pelvis, etc. I do wonder whether this situation has compressed an important nerve, such as the vagus nerve in the neck area. One would think that constant/frequent pressure/impingement could create a dysfunction. At the very least, my postural distortion (and associated pain and lack of mobility) have contributed to higher levels of systemic stress. I might not be a stretch to call it mild trauma, which raises the possibility of mechanisms of PTSD. My cardiologist suggested I may have that, as my symptoms sounded similar to a PTSD patient of his.
sorry for my writing and spelling i'm not much for writing and can't figure out to even edit the spelling
I have same face tension and other symptoms like the shaking in my head and body as i'm trying to fall a sleep i also have Toby1101 high blood count they said it can be caused by a slow growing blood cancer called polycythaemia vera treatment is where they drain blood from you i have not seen the blood doctor yet for this i also have gastroparesis (food sits in stomach) also acid reflux and they say i have fibromyalgia snf snxiety but it all seems food or digestion related some other symptoms i have is burning eyes and mouth,leg and arm weakness,short of breath,left ear ringing, get hot in the face,burning in lega and arms like lava running threw my veins feels like some bad hang over or something, light white tongue, numb tingly hands, back feels like i been beat with a base ball bat, shoulder pain, brain fog, thristy and tired after eating sometimes and so much more high dose vitamin d worked to help me for 4 years not it not working been going threw this for 5 years like to hear back from you
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