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.
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.
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.
Hmmm. The whole 4-5am thing is interesting too. In various other Googling I've done, that seems to be the magic timeframe for people who have sleep problems. Maybe that's just when we start to cycle out of deep sleep more frequently. Everyone wakes up periodically during the night. Maybe we just notice it more because of the vibrations which then tend to keep us from going back into deeper sleep.
-b
You mentioned you've been fairly active lately. Is there any correlation between your level of activity and the vibrations?
-b
So in other words, you're saying the "tremors" are actually real physical rhythmic motions whereas the vibrations are more of a neurological thing that you can feel, but that can't be observed? Is that right? I used to have something that felt more like a lower-frequency tremor that my wife could actually feel if she touched me. Those seemed to happen if I got woken out of sleep suddenly. I figured it was some kind of anxiety reaction. I haven't had those for a while.
The "vibrations" are higher-frequency and feel more like a light to medium electric current. For me, the vibrations are controlled by the Tegretol although I sometimes have some break-through vibrations (also around 4:30-5:00 am). However, even though the vibrations are mostly controlled, I'm still waking up multiple times a night with some sort of GI issue that usually included reflux.
A reminder that I have sleep apnea. I was recently fitted with a dental appliance since CPAP was not working out for me. The sleep dentist I'm seeing pointed out that sleep apnea can sometimes cause reflux since you create a negative pressure in your esophagus that actually ***** up stomach fluids (sorry for the TMI). I believe that my sleep apnea and definitely reflux and maybe some additional GI issues are part of the problem.
I'll write more later.
-b
Wanted to check-in, provide an update and see how everyone else is doing.
About a week after my last post I started getting mild vibrations starting around 5AM or so and lasting until I got up. Mildly annoying at worst.
Prior to starting the HCl I was having tremors - to me those are significantly different. I define tremor as a rhythmic motion. Those were significantly more intense and the more intense the tremor the worse I would feel for the 1st few hours of the day. Longer if the tremors were intense. A hangover is the best way I can describe it - the intensity of the "hangover" being directly correlated to the intensity of the tremors.
With the vibrations I always wake up feeling fine. So to me while the shaking part may be somewhat similar they do seem to be quite different animals.
As far as I can tell nothing changed between sleep being peaceful and the start of the vibrations. They started very slight - wasn't sure if I was having any type of motion or not - and got a bit more intense. I can now clearly notice them but outside of being a bit annoying I'm not having any type of issues.
That being said, it's obviously not "normal" and I have to assume that my body still isn't 100% happy with something.
I still believe it to be nutritionally related. I believe the addition of the HCl allowed for better absorption which eliminated the tremors. Why the vibrations started is beyond me. Maybe the addition of the HCl favors absorption of something at the expense of something else? That's my best guess.
I'm paying attention to things but am not being strict in any respect. To this point I cannot correlate the vibrations to anything diet or lifestyle related.
I've continued with the HCl as described before and that's pretty much it. I've experimented a bit with some of the other things I have here but without any real success.
As I write this I'm wondering if reducing the amount of HCl may make a difference. Too much somehow creating a different imbalance or "over-correcting"? I'll give it a try and post results.
Great info as always Mike. Maybe I'll give the copper a try and see what happens.
One thing that continues to be different in my case is that I'm still clearly having some GI issues. Pretty much without fail, when I'm woken up during the night I feel like I'm having some kind of heartburn. I had a pretty bad bout of this a few days ago and I thought maybe I was overdoing it on the HCL supplements, but it also could have been something I ate. I had a sort of big lunch that day that contained breaded pork which may have disagreed with me for some reason. I remember a few years ago the first time I had a massive GI problem was just after I ate some store-bought fried chicken (which I love). I was in pain for days after that... So maybe it's a gluten thing although I've fairly careful (except for that one lunch recently) about staying away from gluten.
Thanks once again for sticking with this Mike even after you're feeling better.
-b
Well it's nice to find a thread with similar symptoms to mine, and also disappointing that so few have had good results. My tremors or spasms began 3 months ago. Happens about 10 min after lying down. Either to sleep or a nap. Keeps me up all night. Tremors center in my chest and back. Fingers tingle as well. Very similar to all others here I have gone through every test around. Cardio ok. Endo ok. Neurology ok. Gastro ok. Only thing they discovered was severe sleep apnea. Been going to mayo . On propranolol and Lunesta for sleep. That helps somewhat . Tried herbal supplements as well. I am surprised with all this time on this subject there are so few answers.
Glad the clonazepam is giving you some relief Toby.
So I have been on clarazapam for a couple weeks now. It doesn't fix tremors but looking at my Fitbit sleep I went from waking or agitated sleep 15-25 times to one 3-5. I still tremor but now not near as many times. Very little side effects. I like the confidence enhanced feeling too. Not sure how long my liver will like it though. I am only on 2 mg per night. Once you take the pill you have about 1-2 hours then it is bed time.
Hello to all our members who have participated in this long thread. We've added a feature to help navigate it. To place a new answer, just hit 'answer question' and it will be the very last post on the thread. To comment on that, You can now toggle within the thread. You can go to oldest, and it will sort the thread by the very first answer given. Or you can click newest and it will take you to the most recent answer or comment and you can scroll that way from bottom to top or top to bottom. We hope this helps as it gives better control on such a long thread.
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I would like to see this thread resurrected. Some of us may be have further insights to share with others.
I am not sure if anyone will see this, but I have found a practical way to get to the end of this long thread without having to manually click through each page. Here's what works for me, at least in Chrome browser on a desktop computer. I simply type CTRL+F to search within the page, and search on the phrase "have an answer". This jumps to the bottom of the page, which automatically keeps triggering the page loading script until the thread is fully loaded. It takes a couple of minutes, but you don't have to watch it and can switch to other browser tabs. At that point the site functions normally without issue. If you're seeing this at all now, you're probably someone who has already clicked on "Notify me of new activity..."
Instead of "have an answer," alternatives that work are "notify," "respond," and "new activity."
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.
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.
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.
Hi ricepeg,
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.
-b
Wondering how others are going, and whether you have any improvement or new insights.
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.
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.
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.
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.
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.