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...
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.
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.
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.
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.
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.
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?
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.
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.
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.
For those you interested in learning more about methylation, this is a good index and starting point:
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.
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.
Just thought I'd mention that I use followthatpage.com to alert me of updates here.
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.
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.
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.
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?
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.
I too have horrible dry mouth...
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.
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.
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
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...
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.
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
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.
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.
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.
ricepeg, I'm wondering if you've started on the beta blocker yet and whether that's helped at all.
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
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.
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:
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.
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.
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.
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?
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.
Merry Christmas to everyone searching for answers. May you find them in the New Year!
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.
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.
Wow. This thread just passed the 10-year mark. Wonder if that's a record...
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.
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.
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.
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.
Frankly, this is still not much fun. Waking up with vibrations in the chest area, and also some random body-wide vibrations and fasciculations during the daytime (often a kind of tickle in the front and side of neck). When going to sleep it's usually in my legs before it starts up in the chest area (if I notice the chest at all before drifting off). Always in the chest in the morning though.
At least I don't have as much flooding with adrenaline as I used to have. And some year-long minor urinary incontinence seems to have gone away. Some of the autonomic deregulation can be re-regulated, I guess.
Some days anxiety is pretty high and it's hard to work, because I would rather procrastinate than face clients and deadlines. This may be made worse by sleep deprivation: still finding it hard to feel tired before midnight, and usually would get less than 6 hours. Can get really low energy crashes during the day too, like a cross between chronic fatigue and reactive hypoglycemia–not exactly helped by some bad eating habits.
I have so many theories, but no real answers. Have to learn to be content with it, but would love to be rid of it.
Not really complaining: just double checking others out there have something similar, and really just checking in.
On the plus side, I just noticed "Notify me of new activity on this question." That's handy.
Oh, and I did try some intermittent fasting for a few days, and really noticed some daytime improvement. An hour or so after I normally would eat breakfast, I started to suddenly feel weirdly better, though I was expecting to feel worse due to hunger. So the issue could possibly be digestive, which in theory should ease during fasting. Or possibly my sense of improvement could be related to autophagy or HGH or other fast-related changes. I plan to try again for longer stints.
Wondering how others are going, and whether you have any improvement or new insights.
Sorry things haven't improved much for you. I guess I'm in the same boat. I can sleep through the night (usually at least 7 hours) with the help of 20mg amitriptyline and 300mg gabapentin, but the mornings are not pleasant. The vibrations in the morning are pretty draining and are often accompanied by a burning sensation in my arms. The burning sensation lessens quit a bit a few minutes after I get up, but my arms are always "sensitive" during the day. I assume this is some sort of neuropathy as are the vibrations.
For me, the anxiety is pretty much under control. No major anxiety attacks like I was having about a year ago. Although I continue to have a constant low-level of anxiety (more so than the constant level of anxiety I had years ago before I got sick). I'm continuing to work with a functional medicine doctor. My most recent NutrEval test showed that all of my B vitamins are low (worse than the last test) and that this is due to some sort of malabsorption of unknown cause. I also have an overgrowth of certain non-pathogenic bacteria in my gut and so he's started me on some herbal anti-bacterials to try to address that. This is all pretty confusing since I'd been taking a pretty hefty multi-vitamin for months prior to this test and so (if the test is accurate) my malabsorption problem must be pretty severe.
Yes, the "notify me" function seems to be working again. Although it's either working sporadically or it only sends notifications for new posts as opposed to comments.
I'm sorry I can't be of more help.
How is everyone? I am doing ok. Still no tremors, but experiencing memory issues. Sometimes my mouth doesn’t seem to work right. My face feels tight. Not sure if it is related.
I just finished a book by a Dr Nemechek who has developed protocols to treat autonomic nervous system dysfunction. (I believe that the sleep vibrations are a symptom of ANS dysfunction). His book is primarily concerned with his protocol for autism, but it can also be applied to ANS dysfunction which he believes is due to systemic inflammation. The main parts of his protocol involve treating Small Intestinal Bacterial Overgrowth and lack of Omega-3 fatty acids. In certain cases he also prescribes transdermal vagus nerve stimulation. Many of the symptoms he describes resonated with me and I may look into seeing him at his clinic near Phoenix, AZ.
I highly recommend you get a copy of his book (it's a quick read) to see if anything resonates with you. Just do a search on Nemechek Protocol. You'll find his blog and a few videos. If you search hard enough, you can also find a description of his protocol. He also has a quick checkbox test to see if you fit the criteria for ANS dysfunction. I checked many of the boxes.
I have been able to confirm that hooking the back of my neck up to a TENS machine enables me to instantly kill the internal vibrations with the click of a button.
I decided to try this because, as previously related, I can achieve that effect by tapping my fingers on the same area.
I decided to go to sleep with the machine attached so I could experiment during waking up, when the diaphragm area is vibrating the strongest. I did have vibrations in my legs as I lay down to sleep, as is fairly typical, and was able to kill those with the TENS. The vibration is occurring, I start and stop the pulse, and the vibrations have completely stopped. This was also the case in the morning with the chest tremor.
I don't know the frequency (it's a cheap machine), and don't think it matters. I don't know if it's the electricity per se, or the way in which it vibrates muscles (as the finger-tapping would), in turn presumably jolting a nerve (vagus?).
Given this interesting result, I'm going to run the machine periodically in case it serves to stimulate the vagus in the manner of possibly being therapeutic.
It's also got me focused more on the ways in which my vagus nerve might have become irritated, including postural issues leading to reflux (hernia?) and also chronic pressure in my neck, which bends to the right. It may be that the thing that unites us all is irritation to the vagus nerve, even though this could occur in multiple ways. I am still struck by the fact that Toby also experienced what I did with the vibrations being triggered by listening to a certain tone. I also want to just note here that a woman on this thread got over the vibrations after discovering a slipped vertebral disc in her neck, or something along those lines.