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Avatar universal

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
On the topic of getting some sleep, I recently tried a new brand of melatonin that I saw recommended on some other site.  This one seems to be noticeably better than any other melatonin I've tried.  It doesn't do anything to reduce the vibrations, but it definitely helps me to get to sleep better and helps a bit in getting back to sleep when I wake up vibrating.  If it's still early enough (like before 4 am), I sometimes take a little more to get back to sleep.  The brand is Melatonin-ND by Premier Research Labs.  It's sold by a number of online stores so google it to get the best price.  I just put 1 to 3 drops on the back of my hand and lick it off before I go to bed.  If I wake up in the middle of the night, I just use one drop.
Avatar universal
I have a long list of supplements to experiment with, but I'm going to add pyruvate to the list, and possibly also oxaloacetate (see “BenaGene”). These are both glutamate “scavengers,” and neuroprotective on a model of glutamate excitotoxicity, on account of moving glutamate from where you don’t want it building up, back to the bloodstream where it won’t lead to damaged neurons via calcium influx. According to recent literature, this approach holds promise for treating a range of familiar neurodegenerative diseases. If any of us have nocturnal reactive hypoglycemia, that could also cause glutamate excitotoxicity. Zinc being neuroprotective would also be worth combining, as would—I’m guessing—broader support of Krebs cycle enzymes.
3 Comments
Interesting.  I hadn't heard of either of those supplements.  Looking forward to hearing how they work out for you.  I take it you're trying to go the more holistic route and not try things like benzodiazepines.
As to supporting the Krebs Cycle, I'm currently taking 500mg/day of Nicotinamide Riboside which is supposed to help boost NAD+ levels. Although it may have helped with some of my fatigue issues, it hasn't done anything for the sleep vibrations.
I'm happy to go with pharma or natural so long as it is evidence-based (that said, I'm also not averse to conducting my own personal clinical trial). I will favor natural when given a choice, however. But I don't have much choice at the moment, being in a frustratingly slow process in the system here in Australia. So I don't have access to benzos just yet anyway. If/when I get prescribed more meds my approach will be to research the side effects and any alternatives before actually committing. There's some nasty stuff out there. Meanwhile, the natural route is empowering because it's at least accessible, and without the long delays I get in through the medical system.
Avatar universal
These days when I awaken in the morning my tremors (which are often full-body) are localized just below the rib cage. Anyone else?
3 Comments
Yep. That's me.  I've felt for a while that the tremors are localized in my diaphragm which is why it often feels like a breathing problem to me. In fact, sometimes (if I'm not in too much of a daze upon waking), I can put my hand on my diaphragm and it feels somewhat rigid as if it were in a spasm. I've also thought on occasion that I'm being woken up because I stopped breathing or because I suddenly inhaled as if I hiccuped. . A hiccup is a type of myoclonus of the diaphragm. Toby and I were both convinced for a while that we had central sleep apnea although nothing ever showed up during sleep studies.

I have a small hiatal hernia and I know that some practitioners believe that hiatal hernias can impinge on the vagus nerve and cause all sorts of problems. My tremors also seem to coincide with some amount of reflux.  Once again, some practitioners believe that acid reflux can irritate the vagus nerve and/or cause irritation of the phrenic nerves.

Involvement of the vagus nerve would explain a lot including why some of us feel anxiety, have heart palpitations, sweat, need to urinate, etc. during a tremor "attack" And also why I seem to be able to make the tremors go away temporarily by doing about 15 seconds of deep diaphragmatic breathing.
Something improved for me yesterday. I had come off a really bad day the day before. I can get tremoring 24/7, although there was a time when it was only evenings and sleeping/waking. The day before yesterday it was at a level of 9 or 10, causing nausea from adrenaline, and some neuralgic pain. But yesterday, 2 hours after taking Zinc in the morning, the tremors suddenly stopped, or otherwise dropped to a level of 1 or 2. That continued throughout the day, and I had a much better sleep, waking up with the localized tremor similarly at a low. Today, so far, so good.

In keeping with the general reflux/hernia model you mentioned, I was researching H. pylori overgrowth and chronic infection, which can affect ANS activity, contributing in turn to GI and heart problems. I think one mechanism there is pressure on the vagus nerve at the esophageal hiatus not only from potential hernia, but also in the case of pressure from gas against the rib cage (hence, supine position would create more pressure from the weight of the ribs--suggesting that sleeping while inclined might offer some relief). That may be what you can feel some mornings with a rigid diaphragm.

As far as I know, there's also the explanation of H. pylori depleting stomach acid, of directly irritating the vagus, and of acid directly irritating the vagus.

So I was delighted to have my doc suggest this yesterday before I mentioned it to him. I await results from the Urea breath test. I believe half the Western population has H. pylori, so I'm not sure what would be next if I'm positive: endoscopy, I guess.
Interesting.  Although treatment of H. Pylori seems to be somewhat controversial.  Some questioning whether you should even try to kill all of the H. Pylori since some amount might be considered beneficial and it's only when there's an overgrowth that problems occur (just like Candida).  I've tested negative at various times for H Pylori.

As to your other points, sleeping inclined has never helped me. I've tried raising the head of my bed as far as a could without sliding off the bottom. W/r/t vagus nerve issues, pretty much anything that irritates it can cause all sorts of problems.  One thing that occurred to me recently was that years ago after I had my bad reaction to Cipro (which I believe is the root cause of many of my health issues), I was feeling a lot better and began exercising quite a bit.  At one point, I decided to see how many sit-ups I could do and I think I overdid it.  Did I exacerbate my hiatal hernia or weaken my diaphragm in some other way that resulted in all of this?  Hard to say...  I was really pushing the exercise in the months before my tremors started.

Back to the vagus nerve thing.  There are some researchers who are even suggesting that conditions like chronic fatigue syndrome are actually a viral infection of the vagus nerve. I'm convinced there's a connection here.  Not that that does me any good as far as treatment goes.  On the other hand, I'm on an extended vacation right now and I plan to spend a lot of time doing deep-breathing exercises and getting back into the habit of meditating. Both of these are supposed to be good for increasing "vagal tone."

So your doc suggested H Pylori as a possible cause of the tremors?  Is he a traditional medical doctor?  I've never gotten anything from traditional medical doctors other than it must be something "psychological"  But I guess H. Pylori growth is inhibited by zinc/zinc carnosine so this is definitely interesting.  Maybe I'll try that out and see what happens.
Avatar universal
So for the second try.
I am still trying to develop a baseline. I am off everything for a few months now. Vibrations go up and down for mostly no apparent reason. Although, it seems as if holiday sweets may have noticed them higher. I have good trends and bad with no diet changes.

Tinnitus does fluctuate with R.E.M. sleeping. If I slept long enough to initiate vibrations, tinnitus is better. If continued waking all night ears are horrible.

I still feel strongly that central apnea is a major player. I wake a little out of breath at certain times. Sleep studies are a waste of time as they should be called try to sleep while I torture you study.

Thanks for everyone's continued work on finding a solution for this.
1 Comments
Hi Toby.  So you stopped the clonazepam as well?  I thought that was working out pretty well for you.
Avatar universal
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.
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.
12 Comments
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.
Avatar universal
Recently found out about a new hidden condition that can cause strange, difficult to diagnose health issues: dental cavitations.  These are holes left where teeth have been extracted and bone did not grow back. Evidently, this results in infection that can become systemic resulting in all kinds of issues including neurological.  Apparently, I have 3 significant cavitations resulting from having my wisdom teeth removed 30+ years ago.  Naturally, this is all very controversial.

It never ends...
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.
3 Comments
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
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.
Avatar universal
I want to throw out a thought for feedback/comment.

As I look at everything I'm obviously quite disappointed in our medical system in any number of ways.  As I did research I kept coming across the same thing - in many cases the patients know more than the drs about their specific condition.  I certainly felt that way countless times.  However, I kept searching for a dr who would have a little bit different perspective and may have an answer.  What else can you do, right?

Messages boards, various sites, blogs, etc have been tremendous resources as I tried to navigate all of this.  However, I keep coming back to the idea that there has to be a better way.  What if 10 (or 50 or 100) proactive people with a similar chronic condition got together and shared their experience, knowledge, relevant test results, etc?  Seems like the data generated - particularity if it was pulled together well - would be a very valuable resource.

Solving a problem in many cases is about knowledge and it just seems like there must be a better way of generating and utilizing condition specific knowledge.

And not just for patients trying to figure out things on their own but also for drs.  I could see a dr taking more of an interest in a group of 10 (or 50, or 100) people in a similar situation where there is extensive quality data.  1 person is a patient.  A group of 50 - that's more of a research project.  And I may be off base here but I'm guessing that data from a group of 50 would generate interest from enough 'experts' that actual progress could be made.

This is all very rough but it's a concept that I've been kicking around for a couple of years now.  I do web development so I can build a platform.  I also live in the Pacific NW so I have easy geographic access to probably the largest pool of naturopaths in the world as well as Bastyr University.

As I searched for answers for the last 6 years I just kept thinking there has to be a better way and the above is a quick brain-dump of what I've come up with.

At this point I'd like to hear any and all feedback. If all seems to make sense and there's enough interest it's something I'll move forward with.  
4 Comments
I am also a Web developer (back-end).

So what would this service look like and how would it differ from existing sites like this one? There are already sites where you can post questions and doctors can respond.  I think you're supposed to pay something when you get a response and the doctor gets a portion of that.  I don't think I've ever noticed a complementary medicine practitioner participate in one of those sites though.

What would be the value-added in what you're envisioning as compared to a combination of Google and multiple other sites?  What would be in it for the medical practitioner?

Don't get me wrong, I'm just playing devil's advocate here. I'd love some other resource where people can figure out difficult medical issues with or without the contribution of traditional and complementary medical practitioners.
I see the details getting defined as part of the natural evolution of things.  

From my standpoint what's out there is certainly of value but I think there's an opportunity for significant improvement.  

At the most basic level people are struggling with chronic conditions due to a lack of knowledge (either personal or the medical community as a whole) on how to treat/address the condition(s).

What if this was looked at as a corporate problem instead of a medical one?  How does it get addressed?  You get all of the stakeholders together, share knowledge and based on that create a plan of action.  Then the group takes the decided upon actions(s), reconvenes and reviews the situation, identifies next steps, etc.

That's basically what everyone is doing here individually. I think that process can be more effective as a group.

I know I'm not communicating this particularly well so let me try a offline example.  Let's take a group of 15 people with medical condition X.  They get together once/week for 2 hours to share information and identify next steps that need to be explored.  And maybe a dr is present at the meetings and can offer input, recommendations for other drs that will attend future meetings, etc.  So an iterative process effectively leveraging the group knowledge, resources, efforts, etc to find a solution.

So my thought is a group effort utilizing an online platform rather than face to face but similar in concept. I can't help but think that 15 people working together on a shared problem will be more effective than 15 people working individually.
Web dev here too. Maybe this condition only affects developers...

Had the same kind of idea. There are plenty of ad hoc online communities around common health issues. Even those with known diagnoses, such as Lyme, can involve a lot of self-empowerment and trial and error in the treatment phase, which in the case of Lyme can be arduous and therefore require ongoing support and encouragement. healthtap.com is worth checking out, though I would do something rather different to that myself.
That is quite a coincidence.  Maybe programmers, engineers, etc have the most analytical personalities and are more apt to keep at finding solutions to their health problems using resources like this forum.  

I didn't know about healthtap.  I took a quick look and it looks pretty impressive.  Especially the concept of a "health operating system."  I'll take a closer look later today.

Mike,  what you're describing sounds like the combination of an offline (or online) community coupled with "group treatment."  I've seen references (can't remember where) to medical practitioners offering appointments to groups of people with similar issues rather than the standard individual appointment. This is mostly for cost savings, but the information-sharing/brain-storming component would also be there.

One of the problems is that certain groups of medical practitioners believe that they've already solved these problems.  For example, functional medicine practitioners believe that their model is the solution.  However, as you've pointed out, they're all missing the "crowd-sourcing" aspect. Especially when you get highly-motivated, analytical types (like us) involved.

How many times have I want to say to my functional doc, "Well, I read this paper so couldn't it be this?"  And "shouldn't we test for that?" But my 25 minutes is usually up before I can do that.  There's very little opportunity for brain-storming even though my doc seems open to it.

Of course, all kinds of legal/privacy concerns come to mind.  But I'll bet they can be dealt with.  But I think the key is to combine some kind of crowd-sourcing with professional medical guidance probably by a functional medicine practitioner.  I don't think a traditional doc would be useful here.
Avatar universal
I'm going to take some time to think about Mike's very important points before I respond.  But first, my latest update.

Results came back from my latest set of tests from my functional doc. One was urine dysbiosis test (a subset of the full urine organic acids test) which came back completely clear.  No sign of yeast overgrowth.  The second was a stool test from a new lab my doc is now using.  This one showed a couple of parasites and some definite bacterial overgrowth.  Both the parasites and bacteria are generally considered to be non-pathogenic in people with robust immune systems.  Unfortunately, I'm not one of those people. The must striking result was that the amount of Strep bacteria in my gut is more than 100x this lab's upper limit. Strep (and other bacteria) are known to release neuro-toxins. In fact, a systemic Strep infection is thought to be the cause of PANDAS, an autism-like disorder.  So maybe this is the cause of some of my problems that seem nervous system-related.  I had started a new probiotic a couple of weeks ago after which my sleep and anxiety problems improved a bit which is another clue.

The functional doc doesn't like heavy-duty antibiotics and neither do I.  So he's recommended a multi-month GI cleanse which I plan to start in a couple of days.

Unfortunately, this may have nothing to do with why I'm immuno-compromised in the first place.  That may still be mold, Lyme, or who knows...

W/r/t the MTHFR thing, I also seemed to not respond well to SAMe. So I stopped that and switched the B12 from methylcobalamin to adenosyl/hydroxy-cobalamin. I'm also homozygous for a COMT SNP and there's a theory that that can lead to overmethylation if you take methyl B12.  The COMT SNPs might also explain my tendency towards anxiety.  Even Ben Lynch doesn't appear to be completely clear on this point.

So maybe the above is progress.

As to the mold thing, I plan to do an experiment during which I'll move out of my house for a month.  I'm hoping this will confirm whether mold is indeed at the root of my problems and whether my home is the main source of that mold.  Unfortunately, life has gotten in the way of that experiment and so I probably won't be able to move out until the end of March. So until then I've installed a few high-end air cleaners in my home and I'll be concentrating on my gut issues.
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After reading this I got to thinking on my own stuff.  Regardless of the fact that methylfolate has helped tremendously there's absolutely a GI connection.  Probiotics for example - I forgot about the positive impact those had.  And bile salts.  All was fine until my GI went kaput.  So obviously the MTHFR mutation was there all along but caused no issues until the GI dysfunction was added? Now it looks like improving either is enough to bring me back into 'balance' enough to resolve the tremors?  Those are as much questions as they are statements.

What is your plan of attack for your GI?   I'd put my GI health at adequate but I believe there's room for improvement.

I have a similar thought to everything as a whole. At this point I'd consider my overall situation to be between adequate and good but I do wonder if it could be better.  I felt like crap for so long it's tough for me to say what is 'normal' for me.  
First off, I should say that I've been feeling a bit better of late. My vibrations have lessened a bit and my anxiety is much improved. My energy is slightly better as well. I'm probably getting 5-6 (usually 6 I think) hours of sleep which is pretty good for me. I still have what I would call a "very sensitive" stomach so there's still lots of room for improvement here.  I can work a full day now without feeling like I barely have enough energy to drive home.  Could this be because I had some mold remediation work done on my house?  Who knows...

My plan is as follows:

1. Do the cleanse recommended by my functional doc. This will be for at least 2 months. I'll be suspending my mold treatment (cholestyramine) during this time.  There's no way I can do both at the same time.  I haven't decided whether I'm going to include a probiotic during this time or not. I did start taking a probiotic specifically targeted at mood (called Mood Probiotic) which may actually be helping with the anxiety part of this.

2. Probably in late March, I'm going to move out of my house for a month and restart the cholestyramine as an attempt to prove whether any of my problems are due to mold exposure and whether the source of the mold is my house. If both of those are true, then we'll probably move. I've done all the mold remediation on my home I intend to.

3. Depending on the results of the above, I may consider dental surgery to address my dental cavitations. It's thought that these can be the source of hidden infections that can cause chronic illness. One of the bacteria commonly found in dental cavitations is Strep which tested very high on my latest stool test.  This is a controversial, painful, and expensive operation which is why I'm not diving right into it.

4. If all else fails and I still believe I have gut problems, I may consider going out of the country (probably to the UK) and having a fecal microbiota transplant.

During all of this I'm still going to take some supportive supplements like B12/Folate for MTHFR and curcumin, resveratrol for general immune support.
And since we're talking about GI issues and crowd-sourcing, I just wanted to list some of my specific results here in case anyone finds this helpful in the future.

My latest stool test was through Diagnostic Solutions Laboratory in Atlanta. The anomalies were:

- Escherichia spp LOW
- Morganella spp HIGH
- Citrobacter Freundi HIGH
- Streptococcus spp HIGH

Streptococcus was around 100x higher than the max of this lab's range. Escherichia is the 'E' in E. Coli and although you might think that low is good, it actually turns out that there are some beneficial species. And when those are low, it can result in conditions like IBD with constipation.  In fact, there's even a German company that makes a probiotic consisting only of a particular strain of E Coli which has been useful in treating chronic constipation.  Unfortunately, the report doesn't list the species of Escherichia.

Strep in the gut is usually considered to be non-pathogenic unless there's an overgrowth and/or you have a compromised immune system (like I apparently do).

A couple of parasites were found: Geotrichum and Pentatrichomonas hominis. Both are considered to be non-pathogenic, but could still be causing issues for me.

My secretory IGA was low and my calprotectin was hight which is typically a sign of some sort of gut inflammation.
What was your secretory IGA? Mine was 25.1mg/dL (normal range: 51-204). I think it's safe to assume from low sIGA that normally harmless microbes may be going rogue. You could go after strep etc., but also definitely aim to boost sIGA. Not sure if you've tried Saccharomyces Boulardii, but it is fairly unique and worth looking into.
sIgA was 354 micrograms/gram (510-2010).  I had heard that S. Boulardii might raise sIgA so I'll try that again. I'm going to try to go after the strep by doing a cleanse and rotating through some natural antibacterials such as Oregano Oil, Cinnamon Oil, Allicin (Garlic).  Also by continuing with some immune system boosters like curcumin, astragalus, andrographis.  I'm really hoping to avoid pharma antibiotics.
Also, I have borderline low testosterone. This has been true for a while.  The mold practitioner I'm seeing also measured my DHEA and it's on the low side as well. Most complementary medicine docs prefer DHEA to be in the upper 25% of normal. So the mold practitioner has started me on small doses of DHEA.  

Low DHEA supposedly also contributes to low sIgA so maybe the DHEA will help address that as well.
Helpful info. Good luck.
Avatar universal
Here's an interesting piece of data to add to the puzzle.  I've been taking 1mg of Ketotifen at night before bed.  Ketotifen is a first generation H1 antihistamine and mast cell stabilizer. This is actually half the usual starting dose which is 1mg 2x/day. Many people with full-blown mast cell disorders take 2mg 3x/day. This has pretty much stopped (or at least greatly reduced) the vibrations although it hasn't stopped my wakenings during the night. I'm only doing a half-dose because it makes me too drowsy during the day although that supposedly wears off after a while. There's also some concern about long-term use of anticholinergics contributing to Alzheimers.

Now that the vibrations are lessened, I can definitely feel the underlying digestive issues.  Some gurgling and pressure and maybe some reflux.  But I can tell that this is where my vibrations would happen, but don't. Still difficult to explain exactly what it feels like.  I'm guessing that this is due to the anticholinergic effects.  This would also explain why amitriptyline works.  From healthline.com:

"Anticholinergics block acetylcholine from binding to its receptors on certain nerve cells. *They inhibit parasympathetic nerve impulses*. These nerve impulses are responsible for involuntarily muscle movements in the gastrointestinal tract, lungs, urinary tract, and other parts of your body. The nerve impulses help control functions such as salivation, digestion, urination, and mucus secretion."

Obviously, this doesn't address the root cause--only the symptoms.  But maybe this is additional evidence that the root cause is related to some type of gut dysfunction.
Avatar universal
Going down a completely different path now.  Do any of you have any sinus issues?  E.g., deviated septum, recurrent sinus infections, stuffiness especially when lying down to sleep?
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Deviated septum here, and benign nasal polyps. At the onset of this condition I also had unusual (for me) dry-ish nasal congestion, as well as extreme dry mouth of a morning (both things I attribute to some autonomic dysregulation of mucosa/salivation). At that time also the candida appeared and was quite aggressive (producing some sludge beyond a simple white tongue).

Eyes: long term blepharitis and recurrent chalazia. Ears: chronic tinnitus (ringing version), predominantly RHS. I also got that drumbeat tinnitus at night a few months ago that I read about here, but only a couple of times.

I was negative for H. pylori.

Tried niacin and thought it was helping dull the tremors (which I also get at daytime, though the real intensity is with falling asleep and waking up). Not certain. Also trying MTHF, and seeing a new doctor shortly who understands methylation issues.
Interesting. I also have a deviated septum, but not severe enough for an ENT to recommend surgery. In fact, more than one has recommended against it. There's also a connection between the autonomic nervous system and the nasal turbinates. When the turbinates swell, you get a stuffy nose which I often have.

I went down this path because dysfunction of the turbinates can cause a lack of feedback that makes you feel like you're not breathing well. People who have had turbinate surgery sometimes wind up with something called "empty nose syndrome" due to this lack of feedback and develop many problems including anxiety, sleep problems, etc. So I was wondering whether this could contribute to the feeling of not breathing I have when I wake up and the vibrations are an anxiety reaction to that. Or, as you mentioned, it's the other way around and it's all due to some kind of autonomic nervous system dysfunction the root cause of which we still haven't figured out.

Hope you find the new doctor helpful.
Avatar universal
Any luck with the Ketotifen?

Other than tinnitus I have nothing going on with ears/nose.  Tongue definitely had a thick white coating on it when things were bad. In fact, that's one of the markers I look at to determine how my GI is doing.  It's still not what I'd call a healthy, normal tongue but it's reasonably close.  I'm working a bit on GI stuff lately to see how good things can get.  No real change.  I'd put my GI at a 7 on a scale of 1-10.

As far as the tremors - things continue to be peaceful.  My best guess at this point is that whatever dysfunction MTHFR creates my body was able to handle.  Then when the GI dysfunction got added that became too much.  Still wish I knew too much of 'what'.  However, addressing either has resulted in improvements in tremors.  

One thing I have noticed with methlyfolate is that I do feel better all the way around.  It's made a fairly significant improvement.  Since I started taking it I haven't had single morning that I woke up feeling like crap for no apparent reason.

Daytime tremors really suck - had them when things were at their worst.  I had them primarily in my neck and it created issues with vision and balance.  Fortunately they only lasted for relatively short periods of time - 30 seconds to a minute.

Thinking back to those - they always happened when muscles were tense and I tried to relax them. For example, once when I was looking up then back down that triggered the neck tremors.  Same with the night tremors - in the past on a number of occasions I woke up without any tremors, lifted my head off the pillow and that was enough to cause the tremors to start.  It's seemed like the muscles just couldn't relax properly.
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Not sure about the ketotifen. It reduces the severity of the vibrations a bit and makes it easier for me to go back to sleep.  But the effect seems to wear off after a while.  I think that's true of many similar medications.  In this case, what is normally considered to be an undesirable effect that wears off is actually desirable (for me). I'm not sure if I'm going to stick with this long-term. It may have helped the facial flushing (which was thought to be due to histamine intolerance) a bit so there's that.

The muscle relaxation thing is interesting. For me, lifting my head off the pillow often stops the vibrations.

The whole MTHFR thing is so complex. I was taking methyl-B12, methyl-folate, and SAM-e.  I'm not completely sure, but I think the SAM-e might have been causing me some problems.  There was a period where I was having some significant anxiety which mostly went away.  I realized that this coincided with me running out of SAM-e.  So could I have been over-methylating. There is, of course, an easy way to find this out, but I don't know if I want to take an expensive supplement in order to provoke anxiety just to prove this. On the other hand, it would give me some additional hints as to how my body is working.

Remind me are you heterozygous or homozygous for MTHFR and was it C677T or A1298C?

Anything specific you're doing in order to take your GI system from a 7 to a 10?
Heterozygous for C677T.  I definitely reacted badly to SAMe.  In fact that's how I stumbled on niacin and then followed that thread to neurotransmittors and then to methylfolate.

GI - primarily apple cider vinegar, garlic and probiotics.  I've also been taking some MCT oil in the morning.  Primarily because it's here - don't know that it is or isn't doing anything.
Along with quite a few more blood tests, I'm now waiting on my results for C677T & A1298C. Meanwhile, I'm planning a concerted trial of primarily 5-MTHF and NAC (for glutathione).
Just listened to an interview on Chris Kresser's site about methylation and how there is now a view that some practitioners go overboard with prescribing methylation supplements. If I understood the interview correctly, it's very important to measure other markers (such as homocysteine) to determine whether someone really has a methylation issue even if the genetic tests show suspect SNPs. In my case, my homocysteine was 16 which is high on pretty much any scale.  After supplementing with methyl B12, methyl folate, SAM-e it was down to about 10.  Not sure what it is right now.  So in my case, I definitely had an issue although I can't say whether any of my other health problems were related to methylation difficulties.  And obviously, bringing down my homocysteine level didn't do anything for the vibrations.  Elevated homocysteine is one of the markers of inflammation.  So I guess elevated homocysteine could be due primarily to some source of inflammation rather than poor methylation.  I'm heterozygous only for c677t which is fairly common.

I'd be interested in hearing about your blood test results when you get them ricepeg.

Mike, I tried Brain Octane oil for a while which is supposedly like super-MCT oil.  It did nothing for me.
Homocysteine - yep, read that too.  My homocysteine was 6 or 7 - I forget which.  And my OAT tests showed all was good with methylation.  So all markers point to me having no issues however, I cannot argue with results.  

My reactions to methyfolate and niacin see to be consistent - from what I can tell - to those with demonstrable (via test results) methylation issues who take them.  

MCT oil - it seems to give me a bit more energy.  If I take it in the morning the effect is subtle.  I took it once at night and had trouble sleeping.  
That's what I find so confusing. Why do both methylfolate (a methyl donor which should address undermethylation) and niacin (a methyl consume that should address overmethylation) work for you?
I really don't know.  However, when I started taking 800mcg of methylfolate instead of 400mcg my need for niacin mostly disappeared.  

My take on all of this is that there's a lot of unknowns in this area of medicine and based on my experiences I'm fairly confident that the current testing and drs knowledge is not catching everything.
Avatar universal
Hello friends.

After the last post about 6 weeks ago, I had completely stopped all meds and supplements as tremors were completely gone. It had been years since I had felt that good.

Then my job went to hell from a new micro-manager screwing with everyone. Next my life long best friend passed with a heart failure at 47.

Not sure if this is coincidental, but welcome back tremors. Started clonazepam at 1mg. Dropped to half and have nightly tremors in upper back. I cut unnecessary sugar and it seems again to be helpful.
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Hi Toby.  Sorry to hear about the recent stressors in your life. It seems like you might benefit from trying out the niacin experiment.
Hmmm.  My last comment didn't take for some reason.  Sorry about your most recent stressors.  I wonder if doing the niacin experiment would benefit you.
OK.  It *did* take, but I only saw it after I posted this comment.  Sigh...
Hey Toby - sorry to hear about your recent challenges.  How did you get your tremors to resolve?  What helped, what didn't, etc?
Thanks guys, I don't know why they went away. I am full on now.
Avatar universal
MTHFR compound heterozygous here.

I didn't get to see functional doc yet for advice on that. Not certain what to make of it. Am taking 5-MTHF and feeling subjectively more well, but tremors persist for now.
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(Serum homocysteine normal).
The fact that your homocysteine is normal is obviously good news. Remember that just because you have certain gene SNPs, it doesn't mean that those genes are actually expressing. In other words, they may not be causing you any problems. In my case, I was heterozygous for c677t only which is typically considered less of an issue than being compound heterozygous.  Yet my homocysteine was very high. There are additional tests you can take to determine if you might have a B12 or folate deficiency.  Urine methylmalonic acid is a good and easy test (better than serum B12) to determine your B12 status.  

In general, my research has turned up that methylation issues are very difficult to diagnose and treat.  These kinds of tests are a good start, but treatment seems to be mostly trial and error. It's hard to predict how someone will respond to the typical methylation treatments of B12, Folate, SAM-e, etc.

Hopefully your functional doc is up on all this stuff and can advise you.
Thanks for this perspective. I don't have enough of a basic knowledge in this area yet. My doc wasn't available to see me for a month or so I think due to no obvious issue wrt homocysteine. At least it's something I can monitor down the track. I'll keep supplementing experimentally with B12 and 5-MTHF, and plan to try Sam-e in the near future.

I'm also wondering about a possible cause of sleep deprivation. Decades of heavy computer use (sometimes with less than 4 hrs sleep) no doubt has taken some toll. I'd probably average 6 hrs in the period leading up to my tremors starting, which is just not enough as I age. Since the tremors, I haven't really remedied this. I recently read that sleep deprivation can cause tremors until such time as the sleep deficit is repaid. This seems like kind of an obvious theory, but I wonder whether others here could confidently claim to have been chronically sleep deprived at the onset of these symptoms.
The tremors are definitely causing me to be sleep-deprived.  Whether I was sleep-deprived prior to that I don't know.  Maybe due to a few years of undiagnosed sleep apnea? I know that sleep deprivation can cause what are known as "hypnic jerks" which are not the same as the vibrations we're experiencing.  In general, sleep deprivation is thought to contribute to many conditions.  So basically, not sure whether sleep deprivation is a contributing factor to the vibrations, but it's definitely not a good thing regardless.

If you want to learn more about methylation, you might start with some of Ben Lynch's articles at mthfr.net. Of course, this isn't going to help reduce your computer time any.  ;-)
Avatar universal
For those you interested in learning more about methylation, this is a good index and starting point:

http://howirecovered.com/active-b12-therapy-faq/

If that URL got mangled, just Google " 'how i recovered' b12 faq". Some of the content is written from the point of view of someone with Chronic Fatigue Syndrome, but much of it is still generally applicable.
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.
Avatar universal
Just thought I'd mention that I use followthatpage.com to alert me of updates here.
Avatar universal
I finally saw a neurologist, after 7 months wait (Australia). He accepted all that I reported, and could even hear my tremor with a stethoscope. I await an MRI and further blood tests (one of which could take a couple of months as it gets sent to Oxford). He found my sudden onset to be of significance, since that's uncommon with tremor. It was indeed very sudden, like a viral attack leading to various strong electrical sensations, tapering away after three weeks and resolving on tremor—but I also associate it with more subtle vibrations at night 6 months prior that went away, so were it not for a triggering event I suppose my onset could have been much more gradual/insidious (and possibly I would have less daytime tremor).

I am also HLA-B27 positive, which is associated with autoimmune conditions, and I had a phase of autonomic dysregulation, especially inappropriate tachycardia, inappropriate release of adrenaline (leading to nausea, pre-syncope and one syncope), dry mouth, and gut issues.

Due to the rapid onset w/ CNS attack-like experience, the dysautonomic symptoms, and HLA-B27, he hypothesized about autoimmune damage to the nicotinic ganglionic acetylcholine receptors (cf. "myasthenis gravis" although that wasn't mentioned). So my blood test there is for autoantibodies (α3-AChR Ab), with others for anti-ganglioside, anti-neuronal, and VGKC antibodies. If others have had this sort of testing, please let me know.

Beyond that he wasn't very optimistic about figuring it out, and apologized for not having more ideas. He did think it could possibly be MS because that behaves erratically, or some essential tremor. I feel somewhat validated, because I had been sure *something* damaged my nerves, perhaps through demyelination. He doesn't think my being MTHFR compound heterozygous is related, which I take on board, but of course there are different paradigms in play (though I'm not sure I understand a causal pathway there for tremor).

Going in I had thought it potentially significant that my tremor was localized in the diaphragm region upon waking, and also for a while it was there upon falling asleep. My interest was the vagus nerve. He didn't think so, and I think I've figured out why and would agree: muscles systematically shut down upon sleeping—but not the muscles in that area, obviously because they are necessary for vital functions. As a result, body-wide tremor can only manifest there during sleep. It's obvious now that I think about it, and seems to explain why morning tremor can seem to dissipate so rapidly upon the moment of waking. Previously I had wondered about the waking cycle and serotonin, but were that a good explanation the dissipation still should have been more gradual. The muscular paradigm seems more compatible with the ability I have had to switch off tremors instantly but temporarily through tapping on my forehead or the back of the neck (at least one other person here had a similar hack). Possibly that external stimulus elicits the orientating reflex, which temporarily resets muscle activity as part of a fight-or-flight preparedness (which doesn't pan out in terms of a need to activate anything).

Anyway, that's just me. I now need to research acetylcholine more and whether there's anything I can and should do to tinker with that.
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A couple of initial thoughts...  You probably already know that being HLA-B27 positive doesn't necessarily mean that you have an autoimmune condition.

All of the symptoms you mentioned are also associated with Lyme disease which is often misdiagnosed as MS. Your MRI will obviously help shed some light here.  Although I doubt you're going to have much luck convincing a traditional medicine doc to go down the Lyme disease path especially in Australia.  In my case, I know for a fact that I was exposed to Borrelia.  But whether I have an active Lyme infection and whether it's the cause of the tremors is questionable.

If there is damage to the nicotinic ganglionic receptors, I wonder if a good experiment would be to take some nicotine (e.g., from nicotine gum for smoking cessation) and see what effect that has? Conversely, taking an anticholinergic medication would also be interesting. Note that drugs like amitryptiline (which some in this thread have had success with) and tegretol (which I had limited success with) are anticholinergics.

I also had a neurologist discount the vagus nerve/diaphragm theory for similar reasons. I think they're pretty quick to discount the vagus nerve because it's function (and how it can become dysfunctional) is not well understood.  But if the vagus nerve has been damaged in some way (infection, autoimmune disease, etc), then maybe the mechanism by which the autonomic nervous system allows the  diaphragm to continue to function during sleep (so you can breathe) is being affected resulting in muscle tremors in the diaphragm itself. You've already mentioned that you had some ANS dysfunction early on: tachycardia, hyper-adrenaline, etc. Maybe the tremors are part of that...
Thanks for these thoughts, bl218. I had the same thoughts about cautiously trying nicotine gum. I plan on seeing a lyme doc next, if nothing is confirmed in the latest tests. Whatever the cause is, it still seems active in my body as I get flareups of the neuro sensations every week or so.
No problem ricepeg.  It's good to see a neuro actually engage on this rather than just saying that it "must be anxiety." If you end up investigating the Lyme angle, I'm happy to share my thoughts (as always) having gone pretty far down that path myself.
Nicotine gum experiment: 1 x 4mg gum gradually introduced over 90 mins, just in case. Resulted in nausea and profuse sweating (symptoms associated with nicotine overdose). Curious! I don't think that's a normal reaction. (Note: I haven't ever been a smoker). Next up, whatever anticholinergic I can find.
Benadryl is a mild anticholinergic. Aside from that, the rest are all prescription meds as far as I know: amitryptilene, nortryptilene, tegretol. I'm trying out a first-generation H1 inhibitor called Ketotifen right now which is also a mast cell stabilizer. Unfortunately, recent studies show a link between anticholinergics and alzheimers.

Amitryptilene, tegretol. and ketotifen have reduced my tremors a bit for a while.  The effect tends to wear off after continued use though and the side-effects are annoying.
Yes, alzheimers as well as dementia. Unfortunately Benadryl lacks Diphenhydramine here in Australia. I think there are more natural sources; I just have to wade through this survey to see if any are obtainable: https://pdfs.semanticscholar.org/80ff/4142b0b017ead2f66b4edce31932538f7184.pdf
I still have the ironic "advantage" of daytime tremors, so can hope to get more instant feedback from any effect of such experiments. At inexplicable times in the past my tremors have abruptly stopped, sometimes for hours.
Dramamine is another anticholinergic that you can get OTC (at least in the US)
I did some research and came up with the following.  One way to decrease acetylcholine is to increase the enzyme the breaks it down, acetylcholinesterase. I found some supplements that do just that.  The most promising one is called Forskolin. I'll let you Google that.  It is sometimes combined into a "stack" that includes artichoke extract which is supposed to potentiate the effect of Forskolin. Acetyl-L-carnitine and L-Phenylalanine are often included because Forskolin can reduce dopamine levels.  You can actually buy this entire stack in a supplement called CILTEP.

http://nootropicsexpert.com/forskolin/

Haven't decided yet whether I'm going to try this.  If I do, I'll probably leave out the dopamine boosters at least to start.
Avatar universal
I don't think I mentioned this before (and I'm too lazy to go check back in this thread), but I recently tested positive for Toxoplasma.  This is the parasite that you can get from cats (and other sources) that causes toxoplasmosis. This parasite is considered a neurotoxin and causes some pretty nasty side effects.  I'm not exhibiting the worst of those (like schizophrenia and high fever).  

From what I've been able to gather, more than 1/3 of the world's population would test positive for toxoplasma.  It's just that most people's immune systems successfully keep it in check. It's only a problem for the immunocompromised (which I am a bit). The drugs of choice for this are pretty nasty and so I doubt my functional doc is going to recommend treating it.  Although there are some sources that say that there are herbal parasite cleanses that should be able to kill toxoplasma.

My gut (no pun intended) says that toxoplasma is not the underlying cause of what's wrong with me. Just throwing this out there for completeness.
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Checking in...
Been doing well here. Back to minimal and sometimes possibly no tremors.
I am down to .25mg clonazepam for about two weeks to try and not have withdrawal. I am stopping tonight. I have only been taking magnesium as it just makes sense.
My tinnitus has flared up as I think my stress increased coming off clonazepam.
I am scared to try niacin because of blood thinner reactions.
Have been laying off carbs some as it has positive effects.
Hope all is well for everyone.
Avatar universal
Brief check-in.

Started 2,000IU of Taurine per day, which definitely softens my evening tremors. Hoping that may flow on to mornings.

Diagnosed with moderate obstructive apnea; AHI=23; Age=42. Still processing that, but not surprised given what I've read here.
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Interesting.  Did you start Taurine because it's a GABA precursor?  When do you take the taurine and by "evening tremors" do you mean during sleep or just in the evening when awake? Sleep apnea does appear to be a common theme here. If you want information about my sleep apnea experiences (CPAP vs dental appliance vs UPPP operation, etc.) let me know.

Any additional information from the neurologist yet?
Sorry, just seeing this now. I'll see the neuro in a week's time and will report back.

Yes, Taurine because it's a GABA precursor (PharmaGABA was a lifesaver early on when I was getting pumped with adrenaline[?], tachycardia, and nearly fainting).

By "evening tremors" I meant those that occur more palpably in my legs when lying down for sleep, or at least while falling asleep. But also in relation to my daytime tremor, which has always tended to worsen in the evening. Taurine seems to soften whatever is causing the excitation. In fact maybe I should cautiously increase the 2,000IU to see if it helps even more.

I'll definitely ask you for more info if I think my apnea is a big problem to be treated. I was a bit put off by most treatment options, and have decided to just see what I can do more easily to reduce snoring, noting whether that helps. Using a phone app I couldn't find any episodes of stopping breathing (so that was reassuring), and I can see that my snoring varies. So that gives me the needed feedback needed to experiment. An ENT specialist once told me that fixing my deviated septum might fix snoring, so that's in the back of my mind.

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Just checking in.  It has been a few months now and still trying nothing as a baseline.  My tremors are minimal but can still feel a minor sensation once in a while.  It is like my issue has morphed into a different stage.  I don't feel the strong tingling with the tremors. The symptoms are still cycling. Sometimes it feels like they are going away and then the symptoms return.  I usually get tinnitus at the same time.  Anyone making any headway?
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Cycling here. A month ago for a few weeks I was having daytime vibrations in neck and jaw (RHS, front). This may be noteworthy because a long-term postural imbalance has created muscle over-development and compression in that area, potentially impinging upon a nerve. I am nearing recovery so I cycle in and out of that issue.

But that's gone away. I recently had a period of noticeably more body-wide fasciculations, with the daytime tremor sensations shifting to more of a sensation of linear movement (eg. along length of thigh muscle, but deep and almost as if part of circulatory system). From this, the waking tremor, which has been localized in my chest area for so long, seemed to be more of a systemic buzzing. It's not powerful, but it has that mildly awful tingly inflammation feeling.

For the longest time I could temporarily kill the internal tremor with tapping. Initially, tapping my forehead and the top of my head killed it. Then for quite some time, the lightest touch on the back of the neck would kill it—intriguingly, someone else here in the past had that, and her issue was something like disc compression in the neck, which was fixed. I do wonder about that in my case, because there seem to be discs crunching around beyond what's normal when I lay down. So I plan to have that checked out. Just in the past few weeks, it's harder to kill the daytime tremor with a tap to the neck.

Yes to tinnitus (the ringing kind). I've had mine for 9 years though, but the tremor for < 1.

My other leading theories are neurotransmitter issues (Taurine seems to help), or an amygdala-related dysfunction (as in PTSD), or low oxygenation during sleep (apnea), or else a combination of those things and the neck thing.
Have you started treatment for sleep apnea yet?
bl218, you may have missed my reply further above. No, not yet. For now I've decided to see if I can reduce snoring through more inexpensive means, taking note of whether that helps.
Sorry, I did miss your previous reply. This is not the best UI for following conversations.

Don't underestimate sleep apnea.  Oxygen deprivation can cause all sorts of problems.  And sleep apnea is not the same as snoring.  So even if you can reduce snoring, you might not have reduced your sleep apnea.  Did they tell you how severe your sleep apnea is?  This is usually reported as AHI (Apnea Hypopnea Index).
My AHI is 23, classed as Moderate Obstructive. I was told that over the phone, but am yet to receive my detailed results, so perhaps I am playing down its significance too much, having not seen graphs of whatever. I recorded my snoring with a phone app that didn't give me any signs of stopping breathing or gasping for air—but only as a sampling, and not the entire night—and my wife said she'd never heard me do that either. So that's why I have thought in my case it is more equivalent to snoring. But, I need to follow up more diligently, especially after your prompting.
I know people for whom CPAP has been life-changing with comments like: "Oh, so this is what sleep is supposed to be..."  I unfortunately was not one of those people. In my particular case, I was unable to tolerate CPAP because I got air in my stomach.  This is considered a relatively rare side effect.  So now I use a dental appliance for my mild sleep apnea.  I don't think it made a difference in the sleep vibrations, but I can tell that I'm not waking up quite as much.

I'm not sure what the insurance situation in regards to CPAP machines is in Australia, but if the cost is not too great (and maybe even if it is) I highly recommend trying out CPAP.  You have nothing to lose.

I'll get off my soapbox now...
Thanks. My neuro learned of my apnea and thinks that this is the likely explanation for my tremor. I am cleared of anything more serious in the brain and spine.

The mechanism would be the way in which adrenaline, released in the waking reflex upon airway collapse, amplifies a low-level natural tremor. A body pumped full of adrenaline and cortisol all night seems highly conducive to a night time tremor.

I would extend this proposal a little with the possibility of something like adrenal fatigue, and the exacerbation of a co-morbid anxiety disorder (whether arising from the apnea or from other causes), which could be involved in conditioning the habitual tremoring even before adrenaline causes it.

That makes good sense to me, because anxiety/adrenaline can be anticipatory in that way, and while I have not consciously dreaded sleep, my subconscious mind may well have anticipated the predictable sleep tremors generated by the trauma of apnea, and hence started pumping adrenaline before hand, bringing them on in the evenings prior to sleep. Then upon waking, bodily stress is relieved with a few decent breaths, and the mind's awareness that the apnea is over, so that the tremors quickly fade.

Since I heard some confirmation of the theory from the neurologist, I've taken more notice of my experiences. The first night I had a dream about an intruder in the house, so I experienced a rush of adrenaline, which in the quasi-sleep state felt like something liquid being flushed through my body, leading to very heightened tremor, until I realized I was dreaming and things subsided. Then the next night, something fell down in the bedroom with a soft thump, which too-easily caused an adrenaline rush and similar experience.

I'll take beta blockers when prescribed them soon. But I am already all over the antioxidants and other natural remedies proven to assist in complications from apnea. While I await my approval for funding for CPAP (could take a couple of months), I am taking up the didgeridoo, which reportedly rebuilds the throat muscles implicated in apnea, potentially to the point of cure. Also easily obtained here in Australia!
So essentially it's like PTSD, where the airway collapse is the repetitive trauma. I've often wondered why the tremor comes on when I lie down, even before I start feeling drowsy. I think that is just another big cue to the psyche that the trauma is not far away.
This sounds entirely plausible. Although I suspect that it's not the only cause. In my case I've noticed that if I start to drift off and then I awaken suddenly, I experience some vibrations.  Although those vibrations are somewhat different in that they are "lower frequency" and I can actually see my body trembling a bit. When I wake up during the night, the vibrations are higher frequency. Since this started, I also noticed that when I drift off briefly, I almost always wake up with a slight feeling of anxiety. Possibly because my airway has collapsed since I'm not wearing my dental appliance and my head has fallen forward further constricting my airway. Given all this, I'm still not convinced that I'm not suffering from central sleep apnea although no sleep study has confirmed this. Add to this a somewhat constant low to mid- level of anxiety (due to lack of sleep, adrenal fatigue, some systemic infection like Lyme, or mold exposure..who knows?) and I guess you have a recipe for some type of PTSD-like syndrome.

The only doctor who had ever heard of this symptom was the chief of neuro at a local hospital who told me that it was "just anxiety" and wanted to prescribe benzodiazepines which I refused.  I hate to admit it, but he was probably at least partially correct in his diagnosis although getting to the root cause of the anxiety (where anxiety is just a symptom of some other condition(s)) should be the real goal.

This all reminds me that I wanted to try some adaptogens (like rhodiola and ashwaganda) to see what that does for me. I had tried this years ago, but I'm not sure I stuck with them for long enough.

And maybe I'll invest in a didgeridoo as well! ;-)

Are you being prescribed beta blockers because they're useful in masking some of the symptoms of anxiety?  I know that actors and public speakers sometimes take them for that purpose since they tend to reduce heart rate.  In any case, I hope you'll share your experience with them after you've taken them for a while.

Thanks as always for continuing the discussion.
So I have been very consistent with minor tremors for some time. I had only been on Xarelto with fish oil and magnesium for a very long time.  I have noticed that my heart beat was fluttering at times.  It appears that magnesium if too high can cause this.  I have been on 500mg daily for several months.  I stopped taking them and my tremors have kicked up a notch.  

I will experiment with magnesium for a while.  I bought a lower dose of 200mg that has D3 200mg and calcium 200mg.  After stopping for a couple weeks I will restart at a lower dosage.

I haven't experienced the severity of tremors like this in quite some time.  

As far as sleep apnea, I was diagnosed with severe apnea and have successfully been religiously using my machine for a few years.  I felt a great improvement in quality of sleep but this had no effect on my tremors.  I checked this off as one thing found along the way.  

Tinnitus for me is now predictable.  If I sleep uninterrupted when first going to bed for at least 4 hours things are quiet.  If I wake for any reason it is horrible.  I need deep sleep or it will be a bad day.  If I nap it turns up the ring instantly.
I agree it's more than anxiety. My onset came with a rapid virus-like attack on my CNS. I fainted, had rogue candida, many neuro symptoms for 2 weeks, slept a lot (fatigue), tachycardia, nausea, gut issues. GABA helped bigtime, and things resolved into more or less what I read on this forum.

However I can point to a history of stress/anxiety, including around sleep. My wife had insomnia from anxiety, and would constantly toss and turn (affecting my sleep), and wake me even as my snoring woke her. So I think I developed an anxiety-based waking reflex at that time, not merely because of apnea. Now that I know about my apnea, I can put two and two together there. My psychology was such that I felt I shouldn't be sleeping at certain times. As a result of poor sleep I would sleep in in the mornings and sometimes in the afternoon, so I would wake with a start knowing that I'd be met with my wife's disapproval for those things. In short, I can see a pattern of anxiety around my sleeping, and I also at times abused caffeine in order to seek more normalcy during waking.

This was driven home to me last night. I tried a vaporizer for the first time, but it was too noisy and kept waking me up so that I had to switch it off. I'm pretty sure that being constantly woken this way produced greater adrenaline/anxiety and tremor. So I have augmented the apnea theory in this general way: the repetitive trauma of apnea is exacerbated by various responses to it, including the mere anticipation of airway collapse, including the possible anxious response to snoring itself. I've also become more self-distractible the past couple of years, making it hard to focus on work. For example, if I feel hungry, I won't finish the sentence I'm typing, but will just stand up and go eat. It's possible that this is a daytime echo of the self-checking mechanism during sleep ("Am I snoring yet? Is my airway collapsed yet? Does my wife need me to wake up yet?")

The good news is that the snore app shows a decided reduction in that hour or so using the vaporizer. So I'm in the market for a quiet humidifier. Quite possibly an underlying condition affects mucus in my airways. Before my onset stage, there is one symptom I'd noticed that could be relevant, and in fact now seems increasingly so. Dry mouth. I'd never had it before, that I know of. My dentist pointed it out, and then it started getting worse. I know there is a tendency in all this to be hypochondriacal, but I don't think that's in play here. It really was significant enough to prompt investigation. Now I may be no more than a result of apnea, except that it would come on in the evenings before bed, so maybe it's more of a cause.

And that casts my mind back to the time that I was wondering if I had Sjögren's syndrome, due to dry skin while not on gluten-free, and noticeable salivory gland changes when switching between gluten and non-gluten. Just thinking out loud really. I need to try gluten-free again.

Oh, the beta blockers are intended for blocking the effects of adrenaline, due to apnea. Will definitely share any interesting results.
Avatar universal
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
I too have horrible dry mouth...
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Based on some of Mike's experimentation, I tried a new sleep supplement from bulletproof.com called Sleep Mode.  It contains l-ornithine, melatonin, and brain octane (MCT) oil. This helped me sleep a bit better and had only a minor effect on my vibrations.  I also started on a high-grade CBD oil.  I think it's too early to tell on that.
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Just checking in.  Not much change with me. I'm going to be scheduling an appointment with the gastro practice at Mass General in Boston to see if there's anything to my reflux theory of what's going on with me.

CBD oil doesn't seem to be doing anything for me.

Ricepeg, I'm wondering if you've started with the beta-blockers and how that's working out for you.
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Not yet, as the doc wanted to first check my breathing in case of an allergic reaction to beta blockers. Slow system here. Expensive process. I've been taking various supplements that may have helped, except that I can't be sure, so have to start over. At least I still have things to try while I wait.
Ok. I imagine you haven't started CPAP yet either?  And which supplements do you think helped? Your experience should give some of us Americans pause as the debate over single-payer healthcare becomes louder...
We have the choice between private and public healthcare. In theory, private is faster and more expensive, and though I can't afford it I chose that route out of a sense of urgency. I think that may have been a mistake, and I'm now contemplating how to move back through the public system, which is relatively cheap and in many instances free. The private system specialists are not necessarily any better than the public, and often the same people work in both systems. Pros and cons to both.

Off and on at the moment I'm trying ashwagandha (for one thing, a natural beta blocker), glycine, taurine, theanine, mthfr, B2, 6 and 12, magnesium, astaxanthin in case of brain inflammation (people with OCD have 30% higher, so I figure it can't hurt to consider that for a tremor that seems like an anxiety response), echinacea for nasal passage in relation to apnea (it may have helped but 10,000mg led to nausea), and zinc. Plus more standard stuff like C, D, E and Omega3.

No CPAP yet. I am speculating that I have hypopnea more than apnea (pick up my actual sleep report soon), and that this has continued in daytime. I noticed my shallow breathing for the past year or so.

My general theory at the moment is that general stress, anxiety, poor diet and lifestyle eventually caught up with me, and that in conjunction with apnea the release of adrenaline, etc. malfunctions, leaving me with a PTSD-like tremor that waxes and wanes with general health and sleep quality, stress levels, emotional/psychological states, etc.
Thanks for the info. I still have a theory that much of this (aside from sleep apnea) is related to vagus nerve issues. Here's an experiment you might want to try. If you're a shower person, try taking as cold a shower as you can for as long as you can at the end of your shower. This supposedly has positive effects on the vagus nerve in addition to being a cheap form of "cold thermogenesis" which is also supposed to have positive effects on overall health.  I've been doing this for the last few days and I definitely feel better and less anxious after doing it.  It hasn't affected my sleep vibrations all that much (yet) and I don't know what effects it's having on my overall health, but some alternative health practitioners swear by this. Some people actually take ice baths.  I'm not that brave...

This has led to the latest health fad (at least in the U.S.) which is "cryo-saunas" which I was also thinking of  trying.
Avatar universal
Tried posting this before, but it didn't take...

Some of you might be interested in this woman's Web site in which she recounts her son's struggle with palatal myoclonus (among many other things). Some of us have a clicking sound in the ears which is a symptoms of palatal myoclonus. She also mentions in her e-book that her son also suffered from diaphragmatic myoclonus. I've been wondering with the sleep vibrations are actually a form of this.  Some of us (including me) have reported that the vibrations seem to emanate from the diaphragm area. Although from what I've read, most of (the very few) documented cases don't persist into sleep.

Anyway, this is her Web site if you're interested: http://www.sherrijonas.com/store/c1/Featured_Products.html
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Hey friends.  I have quit all meds and supplements for a long time now.  At first it seemed like tremors got worse, then it felt as if they were on a normal cycle that had confused me for the last couple of years.  They would get better and worse as if they were reacting to something that was changed in diet or sleep patterns.  That never changed for some time.  Now I have been carb free for the last couple months.  I have almost lost 30 pounds and the tremors have been gone for almost three weeks strait.  I cannot remember the last time it has gone on that long.  I am doing carb free to lose weight but seem to be getting better the same.  This may point to b's continual search for gut issues.  
I have been eating nothing but lean meats and vegitable carbs.  Also have been keeping well hydrated as to not get the gout issue stirred up.  

Hope everyone else is well.. I will report back later with more results.  
Interesting.  Have you cut out sugar as well? If so, I wonder if you're in ketosis.  Ketogenic diets are often used to address neuro issues. In any case, congratulations and keep it up!
Yes, interesting, and thanks!

Gluten could be a cause here (I'm assuming that was cut out).

I'd be very interested in seeing if I could replicate the experiment, so would also appreciate any further details about the diet (whether it's ketogenic, etc.)

By way of update, an MRI revealed that I have perineural cysts somewhere on my spine. These are often not symptomatic, but in a few more months I'll have a follow-up to see whether they've enlarged. Where they are most commonly located, they can compress nerves leading to digestive dysfunction, etc., so in my mind it counts among my several hypotheses.
Yes.  And on a cervical MRI I have some mild disc degeneration in a couple of places which, according to the report, were "unremarkable."  So who knows...?
I started off at first just cutting out all sugars, starches and breads. Then after a while I decided to go on a ketogenic diet. I have tried the gluten-free diet in the past with no success.

Funny I also have a perineural cyst  found on an MRI in my brainstem. They said it would be no symptoms and that it is fairly common to find one.

I also have some mild disc degeneration in a couple places in my neck. Suspecting this in the past, a doctor tried a shot of Cortizone to see if it makes any difference again with no success.
Avatar universal
Lots of folks have mild disc degeneration so it's hard to know whether this is really contributing to our issues.

I've been trying to get on a keto diet, but I think I'll take it a lot more seriously now.

FWIW, I read back over some of this thread and tried l-carnitine.  It gave me palpitations just like Mike reported so I had to stop it.  I don't know why some people have that reaction. Also not sure whether it did anything for the vibrations. The reason I started the l-carnitine was not for the vibrations, but for the neuropathy I seem to have developed in my arms which also mostly happens during sleep.  Alpha lipoic acid and acetyl-l-carnitine are supposedly helpful in dealing with peripheral neuropathies.  After doing some additional reading, I learned that these might actually be due to carpal tunnel syndrome.  I had been waking up with numb, tingly hands for a while now, but didn't think much of it.  I figured I just had my hands in a bad position.  But then I realized that I also had some mild pain in the underside of my wrists.  Of course, I'm a programmer so I type for a living and it wouldn't surprise me a bit if I've developed carpal tunnel.  The fun never ends...
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.
Avatar universal
Just to be clear, I wanted to point out that although Tegretol stops (or greatly reduces) the vibrations, it doesn't stop me from waking up periodical feeling "weird."  So I think this proves that, in my case, the vibrations are not the causing the spontaneous wakenings, but are probably a symptom (anxiety reaction?) of whatever is
Avatar universal
Another theory to throw out to the brain trust. The vibrations are an anxiety reaction (to something unknown).  At one point, Mike mentioned that the vibrations were worse after he exerted/sweated. Low Zinc has been associated with anxiety/low GABA/excess glutamate.  When we sweat, we excrete Zinc. Maybe some Zinc supplementation possibly coupled with vitamin B6 would help here.
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I've tried zinc and countless experiments with the various B vitamins in almost all forms.  I never had any luck with zinc or B6 - in fact they seemed to make things worse.  However it's not easy to determine cause and effect.  I was convinced for a long time that calcium was a problem but it turns out it was the D in the calcium supplement that I was reacting to.  So I hesitate to say anything with any level of certainly anymore.  Time tends to prove me wrong more often than not ;-(
Avatar universal
It's been a while since I checked in but things are basically the same.  Minimal to no vibrations on most nights.  However what I've been doing has changed.  A few months ago I tried a green juice drink that was basically juiced kale and spinach.  At the time I was having moderate vibrations.  That night I slept peacefully for the most part.  Since then I've confirmed that for whatever reason a large amount of leafy greens is very helpful in minimizing or eliminating the vibrations.  I'm not sure why this is but if I'm diligent about getting lots of leafy greens things are good.  If I start slacking a bit the vibrations will return.

I mentioned the vibrations to a friend of mine a while ago and she said that she had the same thing in the past and that a higher fat diet resolved her issue.  She also mentioned bone both.  I haven't had much luck with a higher fat diet but I did try bone broth several times.  In general it seems to help with the vibrations but it also increases my tinnitus.  Maybe a histamine reaction?  Because of that I don't think that bone broth is a great solution for me but it may be worth a try for others.  Fat and carnitine tie together so in theory I can see a connection there.

One other update - in the past I was almost certain that calcium was causing me problems.  It turns out that it's not the calcium but rather the vitamin D that I react badly to.  I haven't the foggiest idea why but I react badly to supplemented vitamin D.  I tried calcium citrate alone (no D) and that seems to be a good thing although not nearly as effective as the greens.

And the final thing I've been trying - vitamin e.  This came about by looking at what's in the greens that may be helping.  I've been a bit hit or miss with this however I think it may be beneficial.  Hard to say at the moment.
  
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Just shooting in the dark here. Vitamin E is known to have some anti-anxiety properties (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3512361/). Supplementing with vitamin D can reduce magnesium (https://www.vitamindwiki.com/Overview+Magnesium+and+vitamin+D). Increased exercise and also use up magnesium.
Avatar universal
Surely that morning feeling in the body—it's like a dull ache for me, and feels "yuck"—is either cortisol or adrenaline. Surely the condition is somehow related to otherwise normal sleep-induced changes/cycles, such as that of cortisol.
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Yes, I suppose that's the way I would describe it.  That "dull ache" I associate with anxiety and/or depression the severity of which is proportional to how bad a night I've had. I'm trying my CPAP machine again to at least see if I can use it to record any breathing events that might occur just prior to my waking up with vibrations. I have an appointment with the last sleep neuro I saw  in a few weeks and I hope some of this data might be helpful. Still wondering whether this is due to untreated sleep disordered breathing in the past and/or insufficiently treated SDB now.
Avatar universal
ricepeg, I'm wondering if you've started on the beta blocker yet and whether that's helped at all.
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I unfortunately failed an asthma test designed to qualify me for safely taking beta blockers, so I don't have them. I'm supposed to see a lung specialist to determine whether I still can.

I do really think that a beta blocker could help, as I'm leaning towards an adrenal malfunction. I do have the sensation on occasion of adrenaline/cortisol flooding my body. It makes sense that it is a cause of tremor. Those stress hormones cause the vagus to signal release of acetylcholine, which has been on your radar. Don't know. Would be nice to know.
Have you ever had your morning cortisol measured? Mine has always been on the high side not surprisingly. You can do a blood test for this.  You can also do the "diurnal cortisol test" which functional docs use to diagnose adrenal fatigue. You collect 4 saliva samples over the course of the day and send them into a lab. In the States at least, this can be ordered by the patient.  Don't know what the rules are in Australia.
Avatar universal
FWIW, I just did some blood tests for B vitamins since they are involved in methylation, stress, anxiety, etc.  I was very surprised to find out that my serum B6 is 2x the upper limit. I had done some light supplementing with B6 prior to that, but very little.  One site I found indicated that high serum levels could actually result from a *deficiency*. B6 is known to be a stress mediator.  Both too little and too much B6 can cause significant problems. Also something that is not recognized by mainstream medicine. http://www.easy-immune-health.com/vitamin-b6-toxicity.html
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Thank you. Very useful information, because counter-intuitive. According to the article, the fix is to take bioavailable B6 & B12 in particular; something I can try. I'm MTHFR compound heterozygous, normal B12 and unknown B6. Might put B6 testing down on the to do list.
Exactly, I started supplementing with B6 because I thought it might be exactly what I needed.  But I think it backfired on me because all of a sudden I started getting terrible anxiety.  I'm not 100% certain that it was due to B6 toxicity though.  In any case, I've stopped the B6 and I plan to measure my levels again in a few weeks. I was taking both the pyridoxine form and the P5P form and so I guess it's still possible that I have functional deficiency and maybe I need to take the P5P form only. I'm MTHFR heterozygous for c677t only and my homocysteine is at the very high end of the normal range according to conventional levels and definitely high according to functional medicine levels. I'm still holding off an continuing with B12/folate supplementation until I measure my B6 and B12 levels again. You might also want to Google "pyroluria" to see if you fit that description.  Yet another potential rathole to  go down...
You're right about yet another rathole, but I appreciate the reminder, as I meant to follow up on pyroluria again (first time dismissed as fringe, second time intrigued by the similarities... now I'm open to just about anything!)

From memory my homocysteine wasn't high comparable to yours. I am stopping my pyridoxine B6 and will order P5P next round and hopefully get a test for it.
Warning: supplementing with Zinc/B6 backfired on me big-time. It without a doubt caused significant anxiety/depression.  I don't know whether it was the Zinc or B6 or both. I've found some mention of this while researching pyroluria. One theory is that since Zinc is a Copper antagonist, it might cause copper to be "dumped" into  the blood stream resulting in some of these psych symptoms. My plan is to do the pyroluria urine test to see if I can confirm that I even have this condition.  Then I might try supplementing again at much lower dosages.  And yes, I realize this whole thing is diverging from the whole sleep vibrations issue, but who knows whether this could be a contributing factor?
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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
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
Status report.  This unfortunately may not apply to you depending on where you live.  I recently obtained my medical marijuana card (I live in Massachusetts) and have been trying out some things.  It's still early days, but I've been taking a CBD tincture before bed which has a 2:1 ratio of CBD to THC.  I am not getting 7-8 hours of sleep and wake up with only minor vibrations. I'm planning to try some tinctures with even higher CBD/THC ratios to see what happens.  I had tried a pure CBD oil from hemp previously which didn't do anything for me.  So I'm guessing that at least some amount of THC is needed.
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Quick update.  I saw a gastroenterologist today about my possible GERD issues (which I think may be related to the vibrations). I mentioned the vibration symptom to him and held my breath waiting for usual eye-roll or blank stare.  Instead he said, "Oh, yeah I've seen a lot of that particular symptom."  I almost cried. He was actually surprised when I told him that most doctors I've seen have never heard of this symptom and that I was told it was "just anxiety." He believes this can be caused by a hypersensitivity to the acid reflux or just the hiatal hernia causing some kind of autonomic nervous system effect. This is similar to one of my theories. In any case, I have to do an annoying pH study where they put a sensor into your esophagus for 24 hours to measure how much acid is hitting the esophagus. If his theory is correct, then the standard treatment is either PPIs (which I've already told him I don't want to take since I believe I've had adverse reactions) or a "neuro-modulator" such as low doses of Gabapentin. I'm not thrilled with the Gabapentin idea either, but the nurse assured me that they've prescribed that a lot and she's never had a patient react badly to it or have difficulty tapering off when the time comes.
Great! I found PharmaGABA (which also allegedly goes to the brain) very effective in the early days when I was having daytime adrenaline surges. Been meaning to try it again, but have gone with Taurine for now, which I think still helps somewhat.

My reflux symptoms are less lately. And I was getting relief from bicarbonate of soda. I also did a technique where you drink water and then jump in order to coax the hernia down with gravity (not sure if it helped).

And I'm on a ketosis diet which has done wonders for brain fog, fluctuating energy levels, and perhaps anxiety.

Oh, and I tried the Wim Hof breathing method (basically controlled hyperventilation), and after 15 or so breaths I had induced a tremor in my head and neck, which isn't supposed to happen, and is almost certainly set off by adrenaline. I am still convinced of a role for adrenaline during sleep in my case, likely set off by the apnea. I've been tracking my snoring and have had random successes where I can't figure out the reason (yet). Possibly sinus massage. I've noticed that my snoring patterns represent shallow but rapid breathing, and I figure that it's a form of hyperventilation that triggers adrenaline and tremor, as I feel with the Wim Hof thing. It's going to be noticeable in the chest by morning because that's where the muscular action is.
Unfortunately, none of the forms of GABA or taurine ever did anything for me.
Avatar universal
So just a quick update.  

I had been doing well for quite some time without vibration.  Falling off the wagon with the Ketogenic diet, I put back on a few pounds and started experiencing issues again.  I have started on low sugar again and the issues are going away.

Down deep it feels like my problem is breething.  During a lung test it was identified that there may have been an issue that was never ran to ground because it seemed like a rat hole that was not related.  I monitored my O2 with a pulse ox recorder and noticed my O2 dropped off several times during deep sleep stages.  By loosing weight it helps removing the labor to breath.  

At this point I am not really sure about anything.  I am still going forward with no supplements without sugars.  

Oh,  I tried the 1.8HZ tone and immediately felt vibrations in my hands and back of neck.  Just sitting on couch with headphones.  Really do not know what that means.  

Toby
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That 1.8 Hz tone thing is really interesting.  I tried a bunch of different 1.8 Hz tones, but they didn't produce any vibrations.  Although, I do think it made me feel slightly uneasy... Definitely something to the ketogenic diet though.
Avatar universal
I got one of those biostrap things which also measures oxygen saturation.  Not quite as accurate as a real pulse oximeter and it only samples every 10 minutes.  However, I was able to see that my average O2 is in the mid to high 90s as it should be.  However, it drops to around 90 every now and then.  Based on some data I had collected from my CPAP machine a while back, I think this might be because my breathing becomes shallow periodically during sleep.  I don't know whether any of these events correlate with the vibrations though.  Right now, I can usually get a solid 6 hours of sleep before I wake up with vibrations.  This is probably due to the combination of supplements I'm taking.

My anxiety during the day has been at an all-time high which is really upsetting.

Did I ever mention that this whole thing feels like some sort of diaphragmatic paralysis?
Avatar universal

Just checking in. Toby, I am glad to have a fellow "toner" so I know I'm not crazy. It's not a pleasant sound, but I don't think it's any kind of anxiety response. It feels much more like brain entrainment. You mentioned how immediately the vibrations start, and what I find extra puzzling is that the vibration stops even more immediately upon stopping the sound. I'm not actively exploring this right now but will come back to it.

I too have fallen off keto and believe that this led to a rise in vibrations. Also, the more sugar/carbs I have, the worse I snore. On keto, I definitely have better mental focus and more stable energy.


bl218, sorry to hear of your high anxiety. When I struggled more with that (it got so bad I would get a sudden electric shock when an unwanted email came in) I learned to manage it with mindfulness, i.e. by more awareness early on of my triggers and anxious states, and the new practice of pulling my attention/focus out of those distracting states, and actively putting it back where it was beforehand. I had to stop multitasking and using multiple monitors with computer work, and start valuing the state of being single-minded.

"Did I ever mention that this whole thing feels like some sort of diaphragmatic paralysis?"

During the daytime when I sit, for me it feels lower, as a kind of stomach spasm. I'm sitting here for half an hour symptom free, which is rare. I tend to tune out the sensation, but it is unmistakable when it suddenly stops. Naturally, I try to figure out if I've done anything to cause it to abate, and I usually conclude that I have been bearing down internally, somewhat leaning to the left.

I may have mentioned my posture issues here before. Long story short, my internal organs and core musculature almost always sits up higher than it should, rather than sink down into the pelvic cavity. Too much long-term sitting. As a result, I figure that my stomach may be distended, or I'd have various other issues of stretching and pulling that are not posturally ideal (eg. causing reflux). There are various exercises that I can do to straighten up, where it takes a good half hour or more for gravity to pull things into place. I had an usually effective session of that before bed last night, which may account for the relief I'm getting right now, the next morning. I'm going to pursue it. Maybe it's as simple as having a hiatus hernia and it slipping back into place, causing my autonomic system to cut the vibrations (in keeping with what your gastroenterologist offered). Or it could be that something that is out of place internally is putting pressure on a nerve. Regardless, during sleep the musculature obviously mostly relaxes, and this process may possibly cause my night/morning spasm. There seems to be both spasm and vibration. Spasm may be a localized amplification of the vibration.

Here's something mikexxyyzz said a couple of years back:

"One other interesting relationship that I think exists (but am not 100% sure) is shaking during exercise & tremors.  For example - holding a plank until failure.  On some days I'll be shaking all over the place almost from the start while others I'll hardly shake at all.  And on days when I'm shakier on plank I believe the night before I had more tremors."

This is me. I will shake immediately upon plank. Although I would expect to have pathetic core muscles given my lifestyle, I don't think that I would have tremored like that before I got this health condition. What it tells me is that certain core muscles are fatigued due to my long-term postural issues. This is the so-called "neurogenic tremor" that is deliberately induced by postural fatiguing exercises, in a certain therapy for PTSD and other emotional trauma (it supposedly has natural benefits up into the brain). So I tend to think this core instability is part of my problem. Again, the physical configuration of core muscles would relax during supine posture, etc., and even sleep while sitting upright, so that the theory here would involve fatigued and spasming core muscles, which spasm/tremor is amplified when not suppressed through tension. The psoas muscle has long been associated with storage of emotional trauma/stress, so I'll just throw that out there.
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Thanks for the update ricepeg. For me, I'm convinced that I'm being attacked by one or more pathogens: Lyme, mold, parasites, who knows... At the very least, I can prove this via some lab work that my mold practitioner has been doing which shows significant levels of inflammation.  Whether the vibrations are due to a separate disease process, I can't say. Anyway, I'm seeing a different functional medicine doctor who is running a few more tests so we'll see if they uncover anything. I do know that the start of my severe anxiety coincided with certain of those inflammation markers increasing.  So I think I encountered some sort of pathogen that kicked this off and also made my vibrations even worse which probably feeds into my anxiety.  A vicious cycle. For me, there is no trigger (that I've been able to uncover) for my anxiety. I get up in the morning after a not-so-great night. I go about my morning business feeling a little shaky, but not too bad.  Then I notice that my hands are shaking, and then a short while later the near panic-level anxiety starts.  This has been going on since late August. In scouring the InterWebs for natural anxiety remedies, I stumbled upon niacinamide which actually seems to be helping.  That plus a sublingual form of GABA at least allows me to function. I also suspect low Lithium levels.  A couple of years back, the first functional doc I saw ran a urine essential elements test which uncovered very low levels of Lithium. Amy Yasko (one of the MTHFR gurus) says that she finds that Lithium is often low in many patients she sees with genetic profiles (SNPs) similar to mine. I've also read numerous reports about folks having good luck supplementing with Lithium Orotate to address their anxiety.  I haven't tried that yet, because I'm going to be doing a NutrEval test in a week or so and I'm supposed to limit supplements.

As far as the whole diaphragm/postural thing goes, I have a convertible standing desk at work. So I always spend part of the time sitting and part standing.  But I never get the vibrations during the day so my situation is definitely different than yours.  On the other hand, I may have kicked off this latest bout of symptoms by over-exercising.  So maybe that caused more oxidative stress than I could handle or maybe I distressed some musculature or nerves.

Still deciding whether I'm going to travel to do the DNRS training (in Austin, TX) next month. And I haven't looked at the Gupta stuff yet, but I really should.
Ricepeg. I may have said this before, but your symptoms seem to be so multifactorial that it might benefit you to see a functional medicine doctor.  And maybe one who is mold and Lyme literate.  I think there is more going on with you than can be uncovered by a "traditional" MD.
Avatar universal
Merry Christmas to everyone searching for answers. May you find them in the New Year!
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Yes, Merry Christmas.

I may have found a partial answer, or at least an important clue. With the use of an app (SnoreLab) to record and analyze snoring, I've been able to greatly understand my significant snoring levels, patterns and durations (basically all night long), which I'm told has gone on for years—and reduce them to zero for the past two weeks. Literally, from levels beyond 100 on this app, to a consistent 0.

I raised my bedhead high. I know that you've also done that, and perhaps others here, but if I wasn't also recording my snoring, I would have quickly concluded that it achieved nothing, given my goal of eliminating the vibrations.

But because the effect was so immediate and dramatic, I can only conclude that I've had a significant nocturnal problem with reflux for years that I wasn't aware of, and that it caused collapsing airways (probably via some connection to asthma, which I had as a child and was recently told I still have).

What is significant about all this from my point of view is that I now have apparently stopped my apneic events. You know, the things that likely cause nocturnal adrenaline storms, which likely causes my vibrations. Or perhaps the adrenaline is from adrenal fatigue and causes the reflux, which irritates the vagus nerve, which reacts in tremor and further fight-or-flight responses.

I've inferred from past snoring patterns that the apnea occurred when I would abruptly go from loud to quiet, many times a night (and basically wake up with the adrenaline reflex, and roll over). The very first night I raised my behead, however, I had a novel snoring pattern that was starkly constant, with no high-low iterations at all. From the second night I was just suddenly not even a snorer anymore. Snoring only returned moderately on one occasion, after eating a double serve of lasagne for dinner, which only confirms the acid reflux theory.

Meanwhile, just prior to all that I had experienced more waking events where I felt flooded with adrenaline. I had a daytime sleep and somebody innocently opened the door which shocked me awake, and, boom—hello tremor.

So my working theory is that in my case, a stress-related sleep disorder, akin to adrenal fatigue has arisen in response to many years of reflux-driven apnea and poor quality sleep. As a kind of conditioning, I would not expect immediate recovery just by stopping the apnea. But I would anticipate a gradual improvement from that point on, due to finding an exist point from what had been a vicious cycle. Time will tell.

In case I'm mistaken about the raised bedhead, I just want to note here that I still know what I did the same night to end up a non-snorer. In that case it will have been some major massage release work I did under the sternum. It was sore the next day and feels improved to this day. Apparently hiatus hernias can be fixed in this way. But I think it's the bedhead.

Being more aware of this issue has made me more attuned to a general reflux feeling during daytime. I am therefore going to see if I can improve that also. But I suspect adrenal fatigue underlying that, so I'm attending to that too. If I can come by the funds, I'll probably go with an alternative practitioner there.

I know this all isn't exactly sharp and to the point, but I would impress upon others that the snoring fix has been dramatic, and tantalizes me by suggesting a clearer pathway to possible recovery. Perhaps my situation is not unlike others here, so even if you're on top of your apnea via CPAP, you might wish to raise your bedhead, avoid tomatoes like the plague, grab a snoring app, etc.
I will add that I recall reading here that at least one of us didn't recover from vibrations after having successful CPAP, so I guess my point is that it's possible that in this syndrome the vibrations are yet perpetuated by the reflux, not the awakening reflex per se.
Excellent information.  You and I both seem to be centering in on reflux as at least one of the causes of this problem.

Do you still plan to try CPAP? Some people experience a reduction in reflux because the pressure helps keep the reflux down.

You might want to see a gastroenterologist to do a manometry and pH study to look at how your lower esophageal sphincter is functioning and to get a better idea of when the reflux events occur. This is what I just did. In my case, there was no correlation between reflux events and vibration events during the night. However, the report did mention that overall, the total number of reflux events was "high normal" over the course of the 24 hour study. The manometry test also showed a well-functioning LES. However, the gastro still thinks that this is a "classic" case of "visceral hypersensitivity" which I assume means that even though the reflux didn't go far enough up my esophagus to hit the sensor, some amount of reflux could still be irritating something below that (once again, perhaps the vagus nerve). Reminder that I have a hiatal hernia and a lower esophageal ring which could be part of the problem. The treatment for this according to the gastro is some combination of cognitive behavioral therapy (I don't see how this could possibly work), low-dosage acid suppressors, low-dosage neuromodulation drugs such as gabapentin. I'm not thrilled with either of the drug therapies, but I'll probably try it anyway for additional data points if nothing else. My follow-up appointment is at the end of January and I'll report back on that.

Additional info:

I also tried raising the head of my bed, but it didn't do much for me.  Maybe I'll try that again.

I'm even more convinced that reflux/gastro issues are at the root of this problem.  I overindulged on Christmas eve and had one of my worst nights ever.

I failed CPAP therapy (and now use an oral dental appliance) because I was getting air in my stomach. My theory on that is that the hypersensitivity was causing me to involuntarily swallow during the night which caused me to swallow the additionally-pressurized air. I recently bought a different CPAP mask and I might try this again setting my CPAP machine to a lower max pressure.

I'm seeing a new functional medicine doc who is actually local (and accepts insurance!).  He is familiar with mold toxicity and wanted to run an additional urine mycotoxin test which came back highly positive.  This confirms the mold toxicity diagnosis I already had from another practitioner.  On top of that, it appears that I have high levels of lead. Both mold and toxic metals can cause all kinds of neurological issues including the bout of extreme anxiety I had been going through over the last couple of months. Thankfully, this has now died down quite a bit and I only have some minor "aftershocks" from time to time. This could have been due to either the lead or maybe I took a mold hit or encountered some VOCs from some painting I was doing. Overall, the lack of sleep and the vibrations make me even more susceptible to anxiety.

I see the functional doc tomorrow to talk about what we're going to do about the lead.  I'll post more information when I have it.
Avatar universal
Interesting post here regarding "false dyspnea" (the feeling that you aren't getting a full breath) and its connection to reflux. I've often felt like I wasn't getting a full breath during sleep and sometimes when awake, but lying down.  And I've never felt that sensation during exercise.

http://www.hannasaadah.com/blog/medical/false-shortness-of-breaht-pseudo-dyspnea-december-12/
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Wondering if anyone is still monitoring this thread and how you're doing?  I'm still pursuing treatment for heavy metals and mold.  Not much improvement at this point though.
Avatar universal
I had given up and tried to just take a break from trying. I went carb free for a while and saw excellent results. Now I started having issues with gout and put carbs back in and have problems again. I even started having issues with brain cloud during the day. There’s got to be a happy medium to revert to. I was tested for metals a couple times. Never found anything significant.
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Hi Toby. Good to hear from you again though sorry about your relapse. So interesting that carbs seem to be the trigger for you.  Wish I knew more about biochemistry. At least that's something to concentrate on.  On thing I recently learned (through the new functional doc I'm seeing) is that I'm low to extremely low in many of the B vitamins any of which can cause neurological problems. In order to address the mold diagnosis I've actually been living in a hotel (brand-new, very clean) for the last month to see if things improve.  Unfortunately, not much improvement.  Don't know if I posted about this before (too lazy to look back in this thread), but I saw a gastroenterologist who had actually heard of this symptom and though it was something called "visceral hypersensitivity" which occurs due to even a little bit of stomach acid reaching the esophagus.  He prescribed low-dose gabapentin.  That seems to take the edge off a bit, but it's not solving the problem.  I also feel like the symptoms are worse depending on what I eat, but nothing as obvious as your experience with carbs.  But I wonder whether this is indeed a digestive problem as opposed to a biochemical problem.

When I tried going very low carb I got into ketosis (as confirmed by some blood tests), but ended up having panic attacks.  I don't know whether the panic attacks were due to being in ketosis (I found at least one case study showing that some people react to very low carb diets this way), my vitamin/nutrient status, or a combination.

Anyway, nice to hear from you even under the circumstances.

-b
Avatar universal
Wow.  This thread just passed the 10-year mark.  Wonder if that's a record...
Avatar universal
Progress report: I've been taking 20mg amitriptilene and 200 mg gabapentin which is greatly reducing the vibrations and allowing me to sleep a bit better with only mild side-effects such as a little bit of a hangover the next morning.  I suspect that if I upped the dose of either drug, it would help even more, but I'm trying to avoid that.  Those are both relatively low doses for each of those drugs.  200mg of gabapentin is an extremely low dose when you consider that fibromyalgia patients are given up to 3,200mg.  I also find that making sure that I don't eat too much or too late for dinner helps.  This reinforces the theory that this is some sort of digestive issue (visceral hypersensitivity).  In any case, either due to the reduced vibrations or the drugs themselves, my anxiety level is much lower.
Avatar universal
Thank you for posting about your experiences, and for updating. I am experiencing these tremors with falling asleep and waking, also, and it interferes with my ability to sleep. I am being evaluated for the gene for mold illness susceptibility as well as MSH levels by my functional medicine doctor. I am experiencing also hightened anxiety and lots of cognitive dysfunction. In the past when I've had these tremors I noticed a connection where eating more carbs in a given day would make me more likely to have the tremors that night, but now I get them regardless of carb intake. I also think my B vitamin levels are off, and I may be deficient in one or more, as my homocysteine levels are high. I get negative reactions to several B vitamins, and have been playing around supplementing different amounts of different ones attempting to fix any deficiencies. I'm scheduled for a sleep study in a few weeks.

I do hope that you are able to make further progress toward finding a root cause, and are able to eventually wean off the drugs, since I know you were reluctant to start those.
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Hi skboren.

I'm sorry you've joined this club. Interesting that you also initially found a correlation between eating carbs and the sleep vibrations.

Your homocysteine levels could be high due to methylation (B12 and folate-related) issues and other types of inflammation. I'm glad you're seeing a functional medicine doctor who will know what to test for.  Typically, checking your MTHFR gene status (including some other genes) and testing for heavy metals would be done. I also had some issues when I first started taking some B vitamin supplements.  I don't know which ones affected me the most, but I suspect that B6 and/or folate were the culprits.  I've found lots of reports on the Web of people having difficulties with these vitamins.  Anxiety is often reported which is something I experienced.  In my case, I think this was exacerbated by inadvertently going into ketosis (I went a little overboard on the low-carb diet).

One thing I learned is that vitamin B2 is absolutely essential to many processes. When B2 is low, really bad things can happen especially if you try to increase other B vitamins (B12 and folate) without first making sure you have adequate B2.  Increasing B12 and folate will deplete your B2 even further.  If your functional doc doesn't suggest it, you might want to ask about doing the NutrEval test which tests your vitamin status among other things.  Through that test, I found out that I was low to severely low in just about all of the B vitamins.

If you want to learn more about vitamin metabolism yourself, I'd highly recommend poking around phoenixrising.me on the Web.  This is a site which is mostly devoted to people with Chronic Fatigue Syndrome.  Many of the people on the forums there have become very knowledgeable about B vitamins and there are numerous threads about methylation.  This is where I started to learn about the importance of B2 and was put in touch with a Biochemist who is selling is own transdermal B vitamins.  I had some very long discussions with him about building up B2 stores before trying to supplement with B12 or folate.  I'll see if I can distill some of that information and post it here.

I also think it's great that you're being tested for mold toxicity.

If you have any questions about anything at all, please feel free to post here.  It looks like email notifications are actually working again on this site.  Regardless, I tend to check this thread at least once a week.

-b
bl218, thanks much for the reply.

Yes, my functional medicine doc is focusing on leaky gut and methylation right now. I've been tested for heavy metals and it seems I'm aok in that department. Interesting that you've also had negative reactions to B vitamins and ketosis. B6 in more than small doses gives me neuropathy in fingers and toes, and makes blood pool in my legs. Folate or B12 in any form in more than tiny doses triggers extreme anxiety, like you mention. I'm currently doing tiny doses of those, and experimenting with higher doses of B2 and B3.

I would be very interested in any and all information you'd be willing to share re B2 stores. I have frequent migraines and megadoses of B2 are a known treatment, so I've been cautiously increasing it hoping it might help not just with migraines but with the tremors surrounding sleep, my inability to downregulate my fight-or-flight response, and my worst symptom of all, cognitive decline and memory loss (I am in my mid-30s). The transdermal B vitamins sound very interesting. I've read parts of the Phoenix Rising "B2 I love you" thread.

Trying a keto diet was what initially triggered my spiral into severe health issues in 2010 that I have been dealing with ever since. Keto fixed my IBS but it seemed to create new and far more severe problems, so keto is not my friend. Although I do poorly on a high carb diet, too, obviously.

Something odd I've noted is that I primarily get the sleep tremors when I nap during the day, lately, and not so much at night. I have been taking 500mg l-tryptophan before bed, and I wonder if that makes tremors less likely (maybe due to the boost in serotonin). I try to nap every day in the early afternoon when my toddler naps, to try to make up for lost nighttime sleep. I'll take tryptophan in the early afternoon for a few days and see what that does for the tremors, and report back.
Also, thank you for mentioning NutrEval. I have it now on my list of items to discuss next time I see my functional med doc.
Welcome, skboren.

For what it's worth guys I have been in ketosis for 5 months without incident, and the previous time also didn't seem to exacerbate the tremors for me either. As you know initially there can be "keto flu" symptoms, which subside. In our condition, I wonder if slipping into keto is another trigger for fight-or-flight activity that is already hyperactive. So maybe your negative symptoms aren't arising from being in the ketogenic state per se (or from not being in the non-ketogenic state), but rather from the crisis/starvation-mode of first switching over. At any rate, I am soon to switch out, so I'll be tracking whether doing so leads to increased tremor in my case.

I shall have to try building up B2, as when I was experimenting with various supplements something I took worked in a noticeable way (I had/have daytime vibrations as well, and they could very occasionally suddenly stop with a thud, and stay that way for hours). It may have been methylfolate or B12, but I could never verify because it wasn't consistent. But perhaps there's a reason, B2. I also plan to get some Betaine because I was taking HCL with betaine and pepsin, and noticing that having an effect (eg. very dry skin instantly became oily, digestion seemed to improve).  But then I got supplements without betaine and I don't notice any effect from them. Apparently betaine helps maintains a proper level of pH in the digestive tract and protects the stomach against bacteria, so in theory it could assist with any visceral hypersensitivity or bacteria-related issues (neurotransmitter production?).

Also skboren, what seemed to bring this on for me was not quite keto in relation to IBS, but I very much was focusing on my diet in relation to my gut, specifically to try to improve my gut health in relation to candida. I was introducing various probiotics such as keffir and kimchi, making my own yoghurt, etc, and may have overdone it in terms of diversity. I also took an NSAID three days in a row probably on an empty stomach (in ignorance, as I hadn't taken them much before), and I feel that was the triggering event, having to do with my gut lining. I actually got quickly nauseated and fainted. Then for a few weeks I had lots of excess adrenal symptoms and a lots of electrical-style symptoms ultimately resolving in this tremor.
I'll try to pull together some information on B2. Lots more info on B2 on phoenixrising in addition to the "B2 I Love You" thread.  I tried to post the entirety of my email discussion with Greg from B12oils *******, but I guess there's a size limit on comments on this site. I'll condense it and try again.  I've done some research on keto and there definitely appears to be a subset of people who can't tolerate it.  Many end up with anxiety that lasts a while. I suspect this is due to some sort of nutrient deficiency.  In my case, my B vitamins were already low and so I think the anxiety and certain other symptoms happened because I effectively became malnourished.  Once I confirm that I've gotten my vitamin status corrected, I might try a keto diet again.
Here are some snippets from my email conversation with Greg, the b12oils guy.  In this conversation, he listed some multivitamin supplements he recommends.  Sites like this typically don't like posting links to products, so if you're interested in the list, please private message me. You'll note that he has some pretty strong opinions about certain things...

"You can have functional B2 deficiency due to a number of things.
We have found that many people are low on Iodine (lack of iodized salt, don't eat seafood or don't eat Iodine fortified bread).
They are often low on both Selenium and Molybdenum due to where the wheat that they are eating comes from or due to being gluten free.
We recommend
150-300 ug/day Iodine
55-200 ug/day Selenium (but as selenite NOT as selenomethionine).
100-300 ug/day Molybdenum.
You can get all of this in one supplement, several of which I will list below:

[List redacted]"

"Yes, the gluten free is a common problem as people get gut issues and without a skin test go gluten free.

Your experience with the methylB12, 5MTHF is very typical of B2 deficiency. You have to fix this first before you can get the B12 to work, and I have lots and lots of examples in which people didn't get the B2 deficiency fixed, and their OAT data basically didn't change.

On the surface it looks like you probably would be Iodine deficient, and the gluten free may have made you now B1/Se/Mo deficient. NutrEval isn't very good at picking them up, as they all affect B2 levels, and so would track together.

My suggestion would be to try one of the supplements that I will list below. Start with a low dose and build up to a full dose over a month.
You probably would be better with one of the powders, but it is possible to cut the tablets into 4 and use that to obtain a lower dose. After that, introduce the oils at a very low dose to start.
Curiously, not one of the GURU professors that I talk to in B12, has ever experience people "going off" with methyl B12, but then again one sometimes wonders at what they do do.

[List redacted]"

I asked: "Another question that's been bugging me. I have 3 homozygous COMT SNPs and heterozygous for MTHFR 677t.  Supposedly, the COMT SNPS make me sensitive to methyl donors and could be responsible for "overmethylating" and might explain (in addition to low B2) the reaction I had to methylated B12 and folate.  I believe this is a Yasko theory.  Do you subscribe to this theory?  If so, how am I ever going to raise my folate levels if I'm sensitive to methyl folate?"

Greg responded: "No I don't.
Yasko totally disregarded your absolute need for methylation in so many other reactions, energy production being one, but formation of iron sulphur proteins being arguably more important. The chemistry though is complex.
Overmethylation is a rubbish concept.
If you are sensitive to 5MTHF or methyl B12 or any of I/Se/Mo?B, you are functionally deficient in the active forms of B2, which means that you are low in any or all of I/Se/Mo/B2.
When you then start to make SAM from 5MTHF or MeB12 you turn on a massive dose of adrenalin and all the symptoms that that brings."

"...your major need for methylation is actually the production of creatine, your emergency back up energy supply is creatine phosphate. 40% of methylation goes to that.
Most mutations in enzymes such as COMT make them less active, and so they need more SAM not less.
In methyl B12 deficiency, your adrenal glands down-regulate the production of SAM, regardless of SNP.
The so called over-methylation reaction is actually turning on a huge production of adrenalin, which you can't control if you are functionally deficient in vitamin B2, which is why I emphasize it sooooooo, much. The deficiency in FAD means that you have defective MAO, which is what has to degrade adrenalin. No MAO then the adrenalin response is way over the top."
ricepeg, thanks much. I definitely wonder if transitioning to keto more gradually would've prevented all the madness that followed. I'll be interested to hear how going off keto affects your tremors, as well as your experiences with B2. Awesome that you've been able to make keto work for a long period.

Interesting, ricepeg, your experiences with Betaine. I take Betaine HCl with every meal. I've needed it since 2010 when I apparently wrecked my health with high protein, high fat, low carb. Without it, food sits like a rock in my gut, and eventually emerges looking much like it went in (sorry, TMI). I'll play around with dosage on that and see if it affects anything.

Interesting, too, your observation that neuro symptoms emerged with the addition of ferments. I also had added fermented foods and was trying to eat large amounts, when my neuro issues started. I wonder if the high amounts of glutamine and histamine in fermented foods (and in my case, the significant increase in total dietary amines from eating far more protein than I'd ever eaten before) caused increased intestinal permeability, via the gut microbiome or another mechanism. That dietary change for me also marked the onset of migraine, multiple per week, when prior to that I'd never had a migraine in my life. And B2 megadoses have been shown in literature to be effective for migraine...hmmm...

bl218, thanks for posting the dialogue between you and Greg from b12 oils. Your theory that keto can cause problems due to nutrient deficiency seems probable, because I see quite often now that people who are on keto and having problems will resolve some of them with mineral supplementation. Nobody was talking about a possible need to supplement extra minerals when I did keto in 2010...I wonder if that might've helped. I learned months after trying the diet that I was quite deficient in magnesium. Seems plausible that if it increases adrenal stress (which it seemed to do in my case where it caused extreme fatigue, severe bodywide joint pain, insomnia and neuro symptoms) it could deplete B vitamins as well as minerals.

I've got 2 heterozygous COMT snps and I'm homozygous MAO-A (for the version that makes the enzyme degrade catecholamines more slowly). Greg's comments make me want to keep at it with the B2 and maybe keep B12 and folate low for a while and see if that helps. Maybe I'll get some of the activated B2 (FMN or R5P) as now I'm just taking regular riboflavin, because in theory that should prevent any depletion of cofactors or need for cofactors that the body doesn't have (Selenium, Iodine, Molybdenum, Manganese?). My adrenaline is out of control to the point that lately I've been afraid of having to be institutionalized if I can't get that, and the memory loss/cognitive decline under control. The tiniest things now have me reeling, even going to a store can be too much. I've cut off almost all socialization outside my family, it's pretty sad. Last night I had the tremors all night, and hypnic jerks or myoclonus, and adrenaline surges, and couldn't fall asleep until 5:30. My neurologist thinks sleep deprivation and anxiety may be causing the cognitive/memory issues. Thing is, when my intestines are totally empty, like after a coffee enema or a Vitamin C flush, my anxiety just disappears, completely GONE. So this is absolutely gut-related. I've got a sleep study scheduled for a few weeks from now. I'm sorry I'm kind of all over the place here, and please forgive me if I repeat myself, my formerly perfect memory is so poor.

I was looking over my old notes on symptoms and supplements last night and noted that whenever I've had the tremors in the past it's been when I've been on either high doses of Vitamin C or iron supplements, or both. Vitamin C I believe increases iron absorption. Could be coincidence. But this most recent return of tremors happened after I added really big doses of Vitamin C (because they seemed to help my cognition be a little clearer, brain fog a little less), I mean huge like 30-40 grams/day. Maybe I'm depositing iron in my brain and it causes tremors because it is oxidative, or because it messes with dopamine? Or experiencing herxheimer effects from killing some type of Lyme or other pathogen? Or maybe high dose Vitamin C by increasing conversion of dopamine to norepinephrine is causing tremors somehow? People with Parkinson's I think can get these tremors, and we know they have dopamine issues.

I might agree with Greg re overmethylation. I never could make my experience match what should theoretically happen with methyl donors and methyl-using supplements. I tolerate some methyl donors in huge amounts just fine and others send me over the top with just a sprinkle.

So glad you guys are interested in pursuing solutions to this and making ourselves into guinea pigs.

Hi skboren,

A lot of what you describe sounds very familiar. I also believe the gut is involved in this whole mess.  If you've read this entire thread, you'll see that I also think there's a connection to acid reflux/hiatal hernias.  My vibrations seem to increase a bit if I've eaten too close to bedtime.

Even though it'll be difficult with cognitive issues, try to read everything you can on phoenixrising.  Lots of discussions from people with SNPs like yours including MAO-A. MAO-A is a rough one. You're probably already doing this, but make sure that your functional medicine doc is aware of all of these symptoms and the connections you've made between certain supplements and exacerbation of your symptoms.  I assume your 30-40 grams of Vit C was by IV?  I don't think anyone could survive taking that orally. Also, have you done iron blood tests recently?

I had hypnic jerks for quite a while.  Even before the vibrations started. Sleep deprivation can definitely cause that as can over-exercising.  Magnesium before bed can often help with this although I bet you've already tried this.  If you can't get enough Magnesium orally, you could also try Epsom salt baths.

I hope you're functional medicine doc likes to dig in and solve mysteries.  I've found that even functional docs are not necessarily all that well-versed in methylation.  Not surprising though.  As you'll see by reading phoenixrising and my conversation with Greg, it's still a controversial area.  My current functional doc admitted to me that he's definitely not an expert.

You mentioned the possibility that this could be due to a Lyme herx.  Have you been tested for Lyme?  Which tests did  you do? All of my Lyme tests (including the specialty labs) have come back negative. And I don't really have enough symptoms that are consistent with Lyme.

I'm going to PM you with a list of Greg's recommended multi vitamins.  You can decide for yourself whether any of them sound like something you'd like to try and/or run them by your functional doc.
Really appreciative of recent info here guys. I would characterize my experience as very much tied to excess adrenaline, so I am now officially on B2.
I've been reading through the thread...I'm about 1/3 of the way through, haha. I'm making notes of any things that are mentioned repeatedly, clues/hints as to causes of this and possible solutions. Reflux does come up again and again. If I have reflux I don't notice it, but I've long suspected a hiatal hernia in myself.

I watched a video on YouTube where someone connected riboflavin to MAO-A and reported that taking the active form made him a lot more calm, as if it were helping to break down catecholamines. It also allowed him to take much higher doses of folate than he could prior. He'd been reacting to 100-200mcg folate and after riboflavin was able to tolerate 800+mcg. I've added in molybdenum after reading that the B12 oils guy said iodine, selenium, and molybdenum were factors needed to utilize riboflavin (if I remember right). I was already supplementing iodine and selenium, but I stopped molybdenum a few years ago after having been on it for several years, and the timeline actually makes it possible that removal of molybdenum could've been part of why my tremoring started in the first place, as well as the cognitive decline. It seems like a long shot, but naturally I've added it back in and am terribly hopeful. 250mcg 2x/day so 500mcg total/day.

My 30-40g Vitamin C is oral, believe it or not. I buffer the ascorbic acid with sodium bicarbonate (baking soda) and potassium bicarbonate, add water, let it fizz, and drink it down in 5g doses several times per day. When I take the dose down (because man I'll be honest, it causes bad gas, and it also seems to be corroding my teeth...I can feel this film on them that I hope isn't the enamel wearing away!) I get foggier. I can't correlate the Vitamin C to the tremoring, however.

Iron blood tests, yep. Normal reference range in parentheses:

Ferritin (ng/mL) 68 (13~150)
Iron (ug/dL) 81 (37~145 )
UIBC (µg/dL) 283 (112~347)
TIBC (µg/dL) 364 (149~492 )
Transferrin (mg/dL) 294 (203~362)
Transferrin Saturation (%) 22 (12~45)

My functional med doc is the smartest person I've ever seen for my health stuff since it all started in 2010, so I have high hopes in him. You may be right that he doesn't know tons about methylation, but he's at least looking at my SNPs trying to figure out why I'm not tolerating the vitamins that should be bringing down my homocysteine.

I was tested for Lyme in I believe 2012, negative through the regular doc Western Blot, but had some positive bands through Igenex, however, the overall test was still interpreted as negative. I guess there are a lot of shades of gray. I don't think I have/had Lyme. Maybe some other infection...maybe a coinfection. I got the results back from the HLA testing for mold and I do have one of the haplotypes that indicates mold illness susceptibility, so I'm part of that 24% who are genetically susceptible. However, he also tested my MSH levels which are low in 95% of mold-sick patients, and my level is actually high. So that kinda sounds like nay on the mold theory.

ricepeg, great...it will be interesting to compare notes with riboflavin. I did 33mg 3x/day last week, and this week I hope to tolerate 100mg 3x/day.
A few things come to mind:

MSH is not always low in mold patients. You might want to have him run some of the other tests like c4a and c3a.  See the full list here: https://www.survivingmold.com/diagnosis/lab-tests. Unfortunately, it's become difficult to get the c4a test done correctly.  Shoemaker wants it done only at National Jewish Labs.  Quest used to do this test and send the blood to NJL, but they stopped a while back because the prep was difficult.  The blood has to be frozen immediately and shipped in dry ice.  I don't know where you're located, but I've heard that some Quest labs in California will still do this test.  The TGFBeta1 test is also pretty important.  This can be done through Labcorp.

Your iron numbers look fine.

It's pretty easy to get checked out for a hiatal hernia.  Just see a gastroenterologist and have an upper endoscopy.  My father had a hiatal hernia and a lower esophageal ring (also called a Shotsky ring) which is believed to be due to reflux.  I also have a Shotsky ring.  However my father never suffered from reflux. There is supposedly such a thing as "silent reflux."

If you're concerned about what oral vitamin C is doing to you, you might want to consider finding a practitioner that does IV therapy.  My functional doc does this.  I did a few rounds of high-dose vitamin C (35 grams) plus glutathione.  This didn't help my vibrations at all, but I also didn't get a cold or the flu this winter when all of my co-workers were dropping like flies. And for a while, this seemed to help my energy levels although that seemed to taper off after a while.

For B-2, you might want to try a sublingual active form of B2.  I used Source Naturals Co-Enzymated B-2 for a while before attempting B12/Folate again. Greg fomr b12oils recommends taking enough so that your urine consistently stays a  green/bright yellow color.

I should also mention that Greg was clear that you also need to take the precursors for B-2 like iodine, molybdenum, etc.
bl218, thanks much. I'll ask my functional med guy about running the other mold illness labs. Fortunately, he is versed in the whole Shoemaker thing and I trust him.

I had a HIDA scan not long ago (for liver/gallbladder area pain and itching) which came back normal and primary care doc said I could see a gastroenterologist if I wanted. I wasn't going to, but now I'm considering it because you've made me want to explore possible hiatal hernia and/or reflux. Last night I had zero tremoring! What was different? Two things. One, I've laid off the super high dose Vitamin C over the past couple days; I only took about 7 grams yesterday instead of the normal 30-something, and so the usual ridiculous amount of stomach rumbling, bloating, and gas was significantly reduced. And two, yesterday evening I had only a small bowl of sweet potato for dinner, earlier than we usually eat, around 6pm. We typically eat around 7-7:30 and usually protein/carb/veg together which is a lot more taxing on the digestive system. I'm liking how you're thinking here with the digestive stuff (hiatal hernia, reflux). Possible irritation of the vagal nerve by digestive disturbances, which is maybe overly sensitive due to elevated catecholamines?...

I would love to do IV Vitamin C.

I'm taking those B2 cofactors (iodine, selenium, molybdenum). I was getting some pretty bad depression taking 100mg of regular riboflavin several times a day, so I dropped it back to 25mg 3x/day and am doing much better. Possibly B2's ability to help break down catecholamines was making my serotonin and/or dopamine too low...but that's just a guess. I've exhausted June's budget for health-related stuff so I have to wait until July to order my active B2, but it's on my list.
I'm still reading through older comments in this thread. I should mention that, like others, I can also make the tremors stop by taking deep breaths...as if they are due to a problem with poor oxygenation. How that is related, if at all, to the digestive probable causes like hiatal hernia and reflux, I don't know.
Quick update. Recent comments are very helpful. I've had very significant relief for a few days straight. Things were getting worse just prior, such that the switch feels profound. The reason is either going off keto, or going on B2/selenium/molybdenum. I think the latter. I will probably go back on keto soon for 1 week before vacation, so that might be instructive. Funnily enough, I was taking B2 for a few days, and thought I'd better swing back around to experimenting with NAC, as NAC was among the contenders for what might have helped me in the past. I experienced the aforementioned relief, attributing it to the NAC more than the B2. So I got to thinking–Is there anything else in this product (Doctor's Best NAC Detox Regulators)? Lo and behold, the NAC is stacked with Selenium and Molybdenum. These meant nothing to me prior to their recent mention here, but now, considering that and my apparent relief, they sure have got my attention!
skboren, my theory on the deep-breath thing is that it's not an oxygenation issue. The deep breathing is soothing the vagus nerve in some way.  Maybe by moving the diaphragm sufficiently to take pressure off of whatever is irritating the vagus nerve. I've also noticed some emotional issues with B2.  For example, on occasion I think it's made me fatigued maybe bordering on depression.  There is no doubt in my mind that this thing is at least partially due to digestive issues.  If I overeat or eat too late in the evening, the vibrations are worse and more frequent.  If I eat sugary things, I get the same result.  Unfortunately, nothing I do so far has completely relieved the vibrations.

Anyway, couple the digestive issues with some sort of hypersensitivity (maybe due to a nutritional imbalance) and voila.
ricepeg, So great that you've gotten improvement, either from keto or from B2/Se/Mo. I'll look forward to hearing more and hope that the significant relief continues! Really interesting, your experience with the NAC/Se/Mo combo and the connection you made that it might have been one of the minerals rather than the NAC that helped before.

This is kind of Twilight Zone in it's serendipity, but I was looking through my (8 years of) old notes of symptoms and supplements, etc., and discovered that when my cognition improved for part of last summer, I had assumed it was because I was taking pretty large doses of Vitamin C, but the other thing that changed during that time was that I was taking the exact same combo NAC/Se/Mo, and when the bottle ran out, I didn't reorder, because I didn't make any connection at the time that it may have been helping. I was not experiencing the sleep tremors during that time, either. I was also taking a different isolated Molybdenum during the couple of years from 2013-early 2015 when I was doing better in general, health wise. I stopped shortly before the sleep tremors initially began in fall of 2015. And my cognitive issues got severe in winter 2015, also after I'd stopped molybdenum. More recently I've been taking selenium for months without improvement, but the addition of the Mo and B2 has really been helping at least the cognition...though I still have the tremors.

I've recently joined a group on Facebook for people healing from vitamin B6 toxicity. I've made myself B6 toxic a couple of times (because I'm stupid like that) by supplementing pyridoxine. It's a bit tricky because B6 deficiency and toxicity symptoms are basically the same. Some sources say toxicity of B6 is actually paradoxical deficiency where the B6 builds up in the bloodstream (often when people have been supplementing the inactive form of B6, pyridoxine) because the cofactors for the enzymes needed to use B6 in the body are missing or levels are insufficient (among them, B2 and it's mineral cofactors!). I don't know whether that's true, and I've been too scared to take the P5P (active B6) that I bought for fear of making myself worse. I recently realized that my progressing limb muscle weakness  and paresthesias, as well as the sleep tremors, may well be from my trying to force B6 (pyridoxine) over the past couple months in order to lower my homocysteine. It's a slow condition to heal so it'll be months before I can report whether discontinuing the B6 has had any effect. B6 does so many things in the body, and it plays a significant role in nerve function, so it doesn't seem too crazy to think that it (or it's lack) could disrupt vagus nerve function or cause reflux.  But here's the thing: LOTS Of people in the B6 toxicity group have these sleep tremors. It's eerie. But people are taking months to years in order to heal, so it's not the type of thing you can just say, "Ok, I won't take B6 for a month and if the sleep tremors persist, then supplemental B6 wasn't the issue.) What is really unclear is the role of P5P, specifically whether P5P can cause or cure the B6 toxicity (or paradoxical deficiency?). Some people claim to have become toxic on P5P, but others claim P5P can't cause the toxicity issues. I'm just not brave enough quite yet to make myself a guinea pig, although I'm SOOO very curious. For now I'm just continuing B2/Se/Mo and not taking any B6.
I should also report that B2 seems to have allowed me to take small amounts of folate and B12 without my usual negative reaction.  This is very exciting to me. (Maybe I've already said that...if so I apologise.)

My sleep tremors were super bad night before last after I'd eaten a lot more carbs than usual the previous evening. I ate a whole package of Trader Joe's rice mochi snacks which I'm afraid to look at how many carbs it has, lol. I also had a dream where I was drowning in a swimming pool and woke up with the suffocating feeling, gasping for air.

Just for data purposes, I am a female in my mid-thirties and weigh 120 lbs. I have Ehlers Danlos syndrome (diagnosed in 2016) which means my connective tissues are too lax, and I have craniocervical instability on MRI where the dens of my C2 vertebrae transiently compresses my brain stem and spinal cord (due to lax spinal cord ligaments), so it's possible I have apnea due to brainstem  compression, or due to throat muscle weakness from spinal cord damage. My blood pressure runs low, generally, and has all my life. My sleep tremors first started in 2012, but they started being a chronic, debilitating issue during the second half of a pregnancy in 2015, which is also when I accrued some mild spinal cord damage due, I think, to a combo of craniocervical instability and B6 toxicity. So I have mild muscle weakness in all four limbs and in my tongue/throat/soft palate, but it's not something that's noticeable to others around me...only to me. I went for many months without the sleep tremors in 2016 through early 2018. They only started back up again a few months ago. I used to think they went away because I adjusted my bed so that I sleep on a slight incline (and that does actually seem to help some, generally), but they returned all while I've slept on the same bed in the same position...so there is another factor at play.

bl218, you're making sense, saying that it's not an oxygenation issue but a vagus nerve issue. Re the Vitamin B2 causing fatigue/depression...I have that exact reaction to it, also, when my doses is too high. I think when the dose is too high it breaks down catecholamines too rapidly. I am taking 25mg of regular cheap riboflavin 3 times a day with meals. If I go up even just to 33mg per meal, I get the fatigue/depression. How much are you taking and how often, and which form?

I should also report that in the couple of weeks since adding B2 and friends, I have not had a single migraine! I usually average 2 migraines per week. I have in the past taken more than four times this dose, but only once per day, and had no such positive effects. So if anyone out there gets migraines, it might be a clue as to need for B2 etc.

You guys are gonna have me kicked off here for making too long of replies!
Don't worry about the length of your replies.  Lots of good information there.  A few things (in no particular order):

I had also overdosed on B6 when I took loads of the stuff to address some peripheral neuropathies in my arms. (Note that my vibrations started years before I started supplementing with B6 so B6 toxicity is definitely not the cause.  Although I suppose B6 *deficiency* could still be a contributing factor.) It ended up making it worse and may also have kicked off my anxiety attacks which lasted for months. I had my B6 levels tested via blood tests and they were twice the upper limit.  I was also taking a lot of pyridoxine which clearly wasn't being converted to P5P.  It wasn't until many months later that I did the NutrEval and found out that just about all of my B vitamins were low to extremely low.

The only B6 I take right now is in the Life Extension Mix Powder. One scoop contains about 35mg of P5P and a small amount of pyridoxine.  I take 1-2 scoops per day so that's 35-70ish mg of P5P/day. Note that before I started on the mix powder, I was taking 18mg of FMN (co-enzymated form of B2) sublingually for a few weeks.  I had not yet started taking any of the co-factors which may have been a mistake.  So you might want to consider taking the co-enzymated form to see what happens.

Unfortunately, nothing I've done yet has had an effect on the vibrations. But as you've learned in your FB group, it could take a long time.

I can't stress enough that without a test like the NutrEval, you're shooting in the dark as to what your nutritional deficiencies might be.  I think I mentioned that I'm going to do another NutrEval test in September. My functional doc and I agreed that it would be a fine idea for me to take some "time off" from IVs and tests and such.  So I'm going to take the summer off. I'm going to try to be somewhat consistent about supplementation with the LE Mix Powder and my diet.  Unfortunately, I'm finding it difficult to stay on a healthy diet because the Amitriptylene really makes you crave carbs...

Definitely a link between carbs and increased vibrations for me.  Maybe we're not digesting carbs well for some reason which causes additional reflux which causes the vibrations?

If the vibrations are caused by some kind of visceral hypersensitivity, I suspect that this kind of "overactive nervous system" is brought on by any number of root causes.  My guess is that we all don't have the same condition.
Oh yeah, forgot to mention. The waking up breathless could of course be due to sleep apnea.  But you also may have seen a post of mine a while back about "psuedo-dyspnea."  This practitioner thinks that it's possible that one of the causes is hypersensitivity due to acid reflux. https://www.hannasaadah.com/blog/medical/false-shortness-of-breaht-pseudo-dyspnea-december-12/  Not sure this is particularly helpful.  But it is interesting
Avatar universal
It's been quite a while since I've posted.  For the most part things have been good for me with consistent minimal tremors.  Not so much that they interfere with sleep but enough for me to know that they are there.  Particularly if I get woken up suddenly - such as a phone call, alarm, etc.  Just recently however the tremors have almost completely resolved.  Once a week or so I'll wake up feeling crappy for no apparent reason - a hangover is the best way to describe it.  This has been going on for a long time.  A while ago I started looking closely at my diet (which is healthy) to see if I could pinpoint any food intolerances.  I also spent a lot of time looking into histamine intolerance/mast cell issues.  

As far as I can tell the combination of eliminating some foods I may have been reacting to and taking some different probiotics that are supposed to help with histamine issues seems to be of benefit.  Taking a yucca supplement also seems to make a difference - I have no idea why.  I originally thought that yucca helped due to ammonia issues (since that's what it seems to help with) but as far as I can tell that isn't the case .  Vitamin E seems to be a good thing as well.

For a while I was taking calcium citrate and that seemed to help but I've since stopped and noticed little difference.  If I'm remembering correctly calcium has a role in stabilizing mast cells so that may be the connection.  

Yogurt, keifer, etc has always made my tremors significantly worse and since I started the histamine research I found out that one of the primary cultures used in making yogurt, etc - Lactobacillus casei - promotes histamine.  

Ultimately I think the root cause is in the GI and the histamine/mast cell aspect seems to logically fit with most of what I've experienced/learned to date.  

I think there's a connection with tinnitus as well since I can notice a difference in tinnitus levels after eating certain foods.  I cannot correlate tinnitus levels with the tremor levels (I don't think) however I didn't have tinnitus before all of the GI stuff started years ago and the handful of times over the years my GI was good the tinnitus and tremors were either non-existent or minimal.  One of those times was when I was taking large amounts of HCl.  I recently tried HCl again but cannot tolerate even small amounts now.  I believe it's the betaine (methyl donor) that's causing the issue. I'm on the over methylated side of things and don't react  well to methyl donors in general.  However, a few years ago some methyl donors seemed to really help - weird.  

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All fermented and aged products are high histamine.

Lately, I've read quite a few things that relate histamine to issues including Alzheimers,  digestive issues, tinnitus, anxiety. It might be that it's not really the histamine itself, but some inflammatory process that causes additional histamine production (just a theory of mine). Having said that, I clearly have high histamine issues even though blood tests don't seem to indicate that.  My blood histamine levels are  always low which is confusing. A few months ago my face started feeling like it was burning and was red (flushing) almost all of the time.  I realized that in the preceding weeks, I had started eating a lot of a new vegetable-based yogurt. I was also drinking a bit more wine than I usually do and eating a lot of oysters (which are medium-high in histamine).  I stopped all of these and the facial flushing stopped.  Didn't have much of an effect on the vibrations, but I do believe that it reduced the level of my tinnitus a bit.  

Maybe I'll try one of the natural histamine lowering/mast-cell stabilizing supplements (like Neuroprotek) for a while to see what happens.  I've recently gotten my list of supplements down to reasonable levels (they all fit in a shoebox now) and I'm not really anxious to add another one back in.

As to the whole digestive/microbiome issue:  I really wish the US in general was more forward-thinking about this sort of thing.  I would definitely try a fecal microbiota transplant at this point. As it stands now, I'd either have to figure out how to do this myself (no thanks) or travel out of the country. My wife and I were thinking of going to the UK next year so maybe I'll look into that...

// Maybe I'll try one of the natural histamine lowering/mast-cell stabilizing supplements (like Neuroprotek) for a while to see what happens. //

bl218, just for your recall, in Feb 2017 you reported that 1mg of Ketofin before bed "pretty much stopped (or at least greatly reduced) the vibrations."

I appreciate the report Mike, and will circle back around to investigate this more. I had been having kefir, yoghurts and probiotics before my major onset, so that part makes sense. I've been looking for models with greater explanatory power. In particular, to explain excessive adrenaline and some relation to sleep, and then ideally also things like tinnitus and GERD. I've just twigged that excess adrenaline could be the body's response to high histamine, and been reminded that histamine regulates sleep. Interesting.
Histamine is a very interesting and involved topic with lots of unknowns.  Based on my research my thoughts are focused on histamine in the GI and the H2 receptors.  GI histamine is apparently related to HCl production and several years ago I had good results with taking betaine HCl.  Looking back I now am wondering if it was because of the betaine HCL somehow moderated the GI histamine production?

Methylation is also part of the histamine cycle - it is part of the process that breaks down histamine.  So in hindsight I wonder if that's why I responded well to methyfolate, methyl B12, etc.  Now I get negative reactions pretty much across the board from anything that increases methylation.  I'm assuming that is because my system has 'normalized' (for me) and by default I believe I tend towards overmethylation.  

Ben Lynch has a post out there on histamine and suggests creatine and phosphatidylcholine - http://mthfr.net/histamine-intolerance-mthfr-and-methylation/2015/06/11/.  I recently tried creatine again and had negative reactions - but it was fine in the past.  I didn't try phosphatidylcholine.  

I've tried quercetin several times with no noticeable difference.  I've tried several of the strains of probiotics that are supposed to lower histamine with I believe positive results -  those for me seem to work over days/weeks vs hours with some of the other things.  

At any rate, looking at everything histamine seems to be something that ties a number of seemingly unrelated things together for me.  

I think there's a lot more tied to the GI microbiome than is realized today.  Who would have ever guessed that a significant insult to my GI would have caused years of all kinds of seemingly unrelated problems.  But it would appear to be the case.  

bl218 - based on everything I've read over the years I think the idea of fecal transplant is very interesting.  If I were in the same situation I was several years ago I would probably be pursuing that - actually if I had access to that right now I'd give it some very serious thought.  Outside of the yuk factor the upsides seem to outweigh the downsides.
ricepeg, yes I recall the Ketotifen experiment.  It's not a natural supplement, but it is a strong anti-histamine/mast cell stabilizer.  I'm not sure it helped the vibrations as much as amitriptyline does though.  Of course amitriptyline is also a much stronger anticholinergic. And amitriptyline is also considered to be a "neuromodulator" where Ketotifien isn't. From what I've read, it can take a while for natural mast cell stabilizers to have an effect.  I'm not sure whether that's really true or whether it's something the supplement companies say to keep you on the hook.  But thanks for the reminder.  This has gone on so long and I've posted so much about it that I often forget what I've tried.

Mike, yeah...like anything else I've tried I guess it all depends on how desperate I get. Right now, my symptoms are being managed well enough so that I don't feel it's critical to try something like a fecal transplant. For me, the "yuck factor" is not an issue.  It's more the cost and inconvenience of having to go out of the country to have this done.
Although I can't really afford it, I'm thinking of getting some cutting-edge gut microbiome analysis done. This is newly available to me via a local Australian startup, microba.com.

While I'm talking myself into it or out of it, I'd like to know if anyone here has had the same kind of sequencing done already, and/or if you have any thoughts helpful to assessing the value of doing this in pursuit of diagnosing my/our condition. I was told the following:

// Companies that offer less expensive microbiome profiles use a method called 16S rRNA gene sequencing to analyse the microbiome. This method only sequences a small portion of a single gene from bacteria, which acts as a “fingerprint” to identify groups of bacteria. The amount sequenced is about 0.03% of the bacterial genome, or genetic material. Microba uses a method called metagenomics, which sequences all the genes from the microorganisms present, or about 95% of the genetic material. This results in a massive amount of data, which allows us to provide a high resolution (species-level) view of the bacteria, archaea, and even fungi and protists present in the sample. It also allows us to provide information on what these microorganisms may be doing in your gut, such as their ability to digest carbohydrates, protein and fat or to produce essential vitamins. The sequencing costs to generate this data and subsequent data analysis required are much greater than that required for 16S sequencing. Just a few years ago, it would have cost over $1000 to provide a metagenomic analysis of the gut microbiome. We are able to provide this high-resolution test at $350 because the costs of sequencing have come down considerably due to advances in sequencing technology. //

I don't know anything about microba, but I'll look into them.  

I did a microbiome test through Ubiome.  The report I got back was interesting, but nothing I would consider actionable (also see the additional story below). Even if all of the flora in your gut could be identified, I'm not sure that current science knows enough about how the various species affect your health to be able to make substantive recommendations.  On the other hand, it's possible that they could find 1 or more pathogenic species that might lead you to some treatment.  That's assuming you can either treat yourself or find a practitioner willing to act based on that report.  It's really hard to say.  I don't remember whether you are currently seeing a functional medicine doctor.  If so, it might be worth checking with him/her on what they think.

Additional story about my experience with uBiome:

They were offering a "special" through a practitioner that I was seeing in which I would pay nothing for 6 kits and they would bill my insurance company.  They would take the risk of my insurance company rejecting the claim or offering less than the claimed amount.  They sent me 6 kits which I was to use over time and I sent in the first one. uBiome charged my insurance company close to $3,000US and my insurance company inexplicably paid 80% of that (the amount they would cover for an out-of-network lab).  I was amazed and pretty annoyed given their refusal to cover some fairly standard lab tests (like homocysteine).  The amount uBiome would charge if you ordered a kit directly from them is $399. I don't know why my insurance company paid the ridiculous amount, but I didn't want to alert them to anything.  Health insurance in the US is pretty weird. Needless to say, I didn't submit the 5 additional kits.  
Avatar universal
An interesting blog post about stool testing and the microbiome. https://ngmedicine.com/the-benefits-of-comprehensive-stool-testing/. This particular blogger is primarily interested in the microbiome and gut health.
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