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tremors during sleep
I'm a 60 year old men, in excellent health, except for experiencing tremors during sleep that wake me up and have difficulty going back to sleep. As I start to fall sleep again, I feel these "rumbleling" (tremors) around my upper body. I immediately wake up again. These tremors last for about 10-15 seconds after I wake up. The first time I experienced this condition was exactly two years ago. It lasted for about four days and it simply went away. Except for minor incidents (by "minor" I mean I experience the tremors for about two nights and go away) with no major disruptions in my sleep patters. Last week, however, I experienced another episode which does not seem to be going away. The first two nights I simply could not go back to sleep at all. My body wanted to go back to sleep, but, as I mentioned above, everytime I fell sleep the tremors woke me up. I'm on my 9th day and there seems to be no sign of letting up. I went to see my doctor on the fourth day--He prescribed Zolpidem, which I have been taken since. Interestingly enough, even under the influence of the sleeping pill, the tremor wake me up, but they are short-lived since I go back to sleep almost immediately. My doctor said to take the medicine for about two weeks and essencially placed me on a "wait-and-see" mode. My concern at this point is "how long can I possobly survived on this medicine. Does any body "out there" know anything about this condition? As you can immagine, it is extremely debilitating. I'm, for my age, a very atheletic man who is the right things, no vices and bikes to work every day--About
twenty miles a day. Married with two grown children. My job is very stress-free and very enjoyable. Any ideas? Thank you very much.
twenty miles a day. Married with two grown children. My job is very stress-free and very enjoyable. Any ideas? Thank you very much.
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.
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.
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 $$$ I feel that I can only count on myself to figure this out. Not a great feeling but such is life I suppose. The upside is that i seem to be finding things that help and eventually I'll either stumble into the solution that ties it all together or maybe, just maybe find a dr who can put the puzzle together. Doubtful but possible.
Often wrong but never in doubt - that's how I'd summarize the bulk of my interactions with 'medical professionals' to this point. Extraordinarily disappointing/frustrating and something I could rant for hours on but I'll leave it at that for now.
I seem to react badly to many methyl doners - SAMe for example - but well to niacin (at least in the short time I've been trying it) so based on what I understand I must be overmethylating? And if I follow that thread it could mean that I'm overproducing neurotransmittors and thus ending up with an overactive parasympathetic nervous system resulting in the sleep tremors, etc. Just speculation based on fitting all of the pieces I have to date together in a way that seems to make sense based on my understanding to this point.
Not sure what to make of any of it. I ordered a 23 and me kit yesterday so in a few months I should have more info.
For the organic acids test I had both Genova and Great Plains done and Great Plains had far more info. I'm not sure how useful the data is since the recommendation (tyrosine) did not go well at all however if I were to do an OAT again I'd go with Great Plains.
Sorry to hear that you're feeling crappy - hang in there.
Do you have the option of another dr? I've found with all of this stuff that I reach the limit of the drs knowledge rather quickly. I stuck with one for a long time and made little to no progress. Great guy which is why I stuck with him but ultimately I should have been 'dr shopping' sooner. Now I go to a dr to get info not wanting/expecting a diagnosis/treatment plan. Not ideal at all but after years of frustration and many thousands of $$$ 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.
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 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.
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.
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.
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.
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.
4 Comments
* 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.
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.
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.
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?
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.
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...
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
-b
1 Comments
I am still on the Lunesta and at the least it gives me sleep. But the vibes start the moment I get up. They have me wanting to transition to tamazapan. Mayo has run many many tests. Bi answers. Going back to Nero and another nerve test. They say that's it. If not they just treat symptoms. I still can't get over its not heart. It felt like it for so long. Definitely some kind of muscle spasms. Can't believe we all can't figure this out. Some seem to have controlled it but not one answer for all. But I keep reminding myself.. Its obviously not deadly. So I can deal. Hang in there brothers
You mentioned you've been fairly active lately. Is there any correlation between your level of activity and the vibrations?
-b
-b
1 Comments
Nope...can't make any correlations these days. Vibrations just seem to be there in the morning to one degree or another regardless of activity, food, etc.
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
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
1 Comments
I have apnea too. Do you think that my sleep apnea might be the cause of my sleep vibrations?
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.
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.
1 Comments
Hello everyone. Does anyone have an update on their status? Since this is an old thread, your health evolution is valuable information two others who are experiencing sleep vibrations now. I would love to see you post health updates here, whether they are good or bad. The others reading this will also need to know whether you eventually got a firm diagnosis, and whether you ended up having an underlying health condition that was not apparent when you first posted here. Thank you so much! Personally, I have been experiencing sleep vibrations since 2020.
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
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.
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Welcome Frankie. Yes, your symptoms sound all too familiar. Sleep apnea also seems to be a thing for some of us. What was your AHI? Are you using CPAP now? I tried CPAP for a while (I have moderate sleep apnea, AHI=15), but it didn't work out for me. I'm going to see a dentist in a couple of weeks to be evaluated for a oral sleep apnea device. So does the propranolol/Lunesta combination stop the tremors or does it just let you get a bit more sleep, but you still wake up to the tremors?
My AHI was 85 so severe apnea. I would say that the combination of proponolol and the Lunesta just get me through the night. I wake-up and feel them. But at least I can sleep and function the next day. Got back from Mayo today and got a script for Elavil which seemed to have helped the original poster of this thread. So trying that tonight. It's a weird weird condition that seems to stump the best doctors. I mean the good side is it isn't deadly, the bad side is is it disrupts one life. I hope to get to the bottom of what causes it but also can deal with it if I can control the symptoms. They scheduled me for x-rays and a back mri ans well as an EMR to test the muscles. I think it is definitely muscular and a spasm of some sort. And agree with all of you that diet and stress aggravate it. But it is definitely physical and not psychosomatic I'm origin. Mine came out of the blue. I suggest you try cpap again. Both my neurologist and cardiologist feel that apnea may be the root cause of it. They know so little of the effect of apnea on the body. Hang in there. Again it's somehow reassuring to know others have this. And remember as bad as it feels... It's not cancer... Its not parkinsons... So we can get through it.
Frankie, do you have any of the other symptoms some of us have been experiencing: tinnitus, clicking sound in the ears, GI issues?
Had clicking sound in ears.. That went away. And yes on gi issues. Rumbling etc. Endoscopy found nothing
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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Thank you. So much valuable information here for people suffering. Glad it's navigable again.
P.S. If you're going to post you might want to log back in to the site first. Otherwise you will be prompted, and will have to get to the bottom of the thread a second time.
6 Comments
I did get a notification of your post so that seems to be working now, which is great. I have not posted for a long time, but wanted to let everyone know that the vibrations I felt in my bladder/pelvic area have completely disappeared since I had an infected root canal tooth redone last January.
I am planning to have an implant done but wanted the bone to regenerate that was destroyed by the infection so I don't have to do a bone graft.
What I found interesting is the meridian associated with that particular tooth is to the Kidney/Bladder area, which makes sense if that electrical pathway was being disrupted with the infection.
I don't know if anyone else has any root canal teeth or cavitations from extracted wisdom teeth, but if you do, I would highly recommend getting a cone beam scan to find out if there is any infection. It can detect hidden dental infections much better that regular dental x-rays.
My dental appointment is the 15 Sep so I will let you know how it goes.
I am planning to have an implant done but wanted the bone to regenerate that was destroyed by the infection so I don't have to do a bone graft.
What I found interesting is the meridian associated with that particular tooth is to the Kidney/Bladder area, which makes sense if that electrical pathway was being disrupted with the infection.
I don't know if anyone else has any root canal teeth or cavitations from extracted wisdom teeth, but if you do, I would highly recommend getting a cone beam scan to find out if there is any infection. It can detect hidden dental infections much better that regular dental x-rays.
My dental appointment is the 15 Sep so I will let you know how it goes.
That's fantastic! Another success story and line of investigation for others. Thanks for returning here!
ricepeg you are so welcome. I truly hope everyone will look into any hidden dental infections they might have.
The vibrations I originally felt in my neck were resolved when I went in for several physical therapy visits after a chiropractic treatment.
But the vibration in the bladder and pelvic area would come and go at various times no matter how many physical therapy treatments I did until last January when I had my root canal tooth redone. I have had to do several protocols with a certified nutritionist to try and clear up all of the infection and I am now able to fall asleep and stay asleep for 6-7 hours now. I am feeling so much better and I hope this will help everyone here as well.
The vibrations I originally felt in my neck were resolved when I went in for several physical therapy visits after a chiropractic treatment.
But the vibration in the bladder and pelvic area would come and go at various times no matter how many physical therapy treatments I did until last January when I had my root canal tooth redone. I have had to do several protocols with a certified nutritionist to try and clear up all of the infection and I am now able to fall asleep and stay asleep for 6-7 hours now. I am feeling so much better and I hope this will help everyone here as well.
This is to bring you up to date on my dental procedures. I had tooth no. 9, my root canal tooth, removed along with 4 other back teeth mostly on the upper jaw. I also had all 4 of my cavitations cleaned out.
I am still working with my certified nutritionist to clear up all the rest of the infection that had spread throughout my system from my hidden dental infections. She is doing this with herbal protocols.
I am sleeping 6-7 hrs. every night and no vibrations whatsoever. I am dealing with SIBO along with Hashimoto's, but am feeling so relieved to be able to sleep now.
The teeth that needed to be removed did not have any cavities...they just slowly died over the years and then had hidden infections that are much more easily detected with a cone beam scan rather than regular dental x-rays. I have always gone for my regular checkups and dental cleanings, but not to a biological dentist.
Hope others here will find this helpful, too!
I am still working with my certified nutritionist to clear up all the rest of the infection that had spread throughout my system from my hidden dental infections. She is doing this with herbal protocols.
I am sleeping 6-7 hrs. every night and no vibrations whatsoever. I am dealing with SIBO along with Hashimoto's, but am feeling so relieved to be able to sleep now.
The teeth that needed to be removed did not have any cavities...they just slowly died over the years and then had hidden infections that are much more easily detected with a cone beam scan rather than regular dental x-rays. I have always gone for my regular checkups and dental cleanings, but not to a biological dentist.
Hope others here will find this helpful, too!
Hi iegen, thanks for your post. any updates to the situation. thanks for your input
Hi specialmom, you are so welcome!
As far as an update, I am still doing herbal protocols with my nutritionist (2 yrs.) and I was able to sleep last night a full 9 hrs. I have been getting a good 6-7 hrs. each night so I am excited I was able to do 9 hrs. last night. No tremors, no having to get up and go to the bathroom.
I have not had any tremors for quite a long time now. I can't help but feel they were being caused, in my case, from these hidden dental infections, which may have also caused my Hashimoto's (autoimmune).
Hopefully, this will be helpful to you. Would love to hear how you are doing.
As far as an update, I am still doing herbal protocols with my nutritionist (2 yrs.) and I was able to sleep last night a full 9 hrs. I have been getting a good 6-7 hrs. each night so I am excited I was able to do 9 hrs. last night. No tremors, no having to get up and go to the bathroom.
I have not had any tremors for quite a long time now. I can't help but feel they were being caused, in my case, from these hidden dental infections, which may have also caused my Hashimoto's (autoimmune).
Hopefully, this will be helpful to you. Would love to hear how you are doing.
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 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 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.
5 Comments
Wow. That's exciting news ricepeg. I received my TENS unit last week, but I haven't gotten around to trying it out yet. I bought a set of ear clip electrodes and was going to try tVNS via the ear as described in the Nemechek protocol, but maybe I'll just try the normal electrodes on the back of my neck first. I definitely have neck problems (which I may or may not have mentioned before) and I've started seeing an Osteopath for that. This treatment hasn't helped all that much yet, but at least she's more open to some of my theories about the vibrations and the vagus nerve. I also purchased a traction device (which I also haven't tried yet) to see if applying mild traction to my neck might help. Just need to get over the fear of experimentation...
Here's some more interesting reading:
https://www.sciencedaily.com/releases/2019/02/190213142700.htm
-b
Here's some more interesting reading:
https://www.sciencedaily.com/releases/2019/02/190213142700.htm
-b
Thank you for sharing that! I absolutely think this has something to do with vagus nerve and/or diaphagm and/or stomach/hiatal hernia issues. I had bad gastritis (I assume that's what it is) last week and the vibrations really kicked into high gear during that time, jolting me out of sleep worse than I'd experienced in months. I also get increased tremors when I take Vitamin B12 supplements, so now I'd like to figure out what B12 has to do with vagus nerve and stomach stuff.
skboren, I believe that my reflux/hernia problem was brought on by way too much sitting at the computer. I realized that I also had a chronically tight psoas while standing up, so the other day, throughout the day I consciously tried to let this go, and let my stomach hang out all the way. I think I had long been subconsciously pulling my stomach in, for aesthetic reasons and just believing that this was healthy. In any case, letting it all hang out led to a bunch of sudden “proto-coughs” or gasps that I associate with a hernia sliding back down. I did this knowing that I had had a few days of worse reflux and was being taken to a smorgasbord restaurant for my birthday. Despite all the food, I had a 100% reprieve from reflux that day, which surprised me and made me determine to keep working on this technique and improving posture.
On B12, the vagus aids in digesting B12 from food by stimulating the stomach to secrete intrinsic factor, so a malfunctioning (or severed) vagus can lead to B12 deficiency. This is a wild guess, but it may be that if your supplements aren't being so absorbed, they may end up causing irritation to further exacerbate the tremor. I think I may get a similar exacerbation from eatings lots of carbs (as you earlier mentioned), and B12 is needed for metabolising those, so there could be something to the B12 deficiency thing. Perhaps sublingual B12 could help, per this person's experience from another forum: "Since taking daily sublingual B12 my lifelong inherited symptoms of heartburn, bloating, constipation have all disappeared and also my breathing, swallowing and anxiety issues have all but gone. I tried coming off B12 for 2 weeks and all my problems returned. I am now taking 2500mcg liquid B12 twice daily. I think all my symptoms are linked to the vagus nerve. My sister gets 3 monthly injections but her symptoms return before her next jab. I am ifab negative with first B12 level 164 and second 236, doctors are not treating me for B12 deficiency as my levels are 'normal'. I have to sleep with 2 homemade sleeves to stop me wakening with numb hands (it works) and hoping that my nerves will someday repair. I have lots of other b12 related symptoms."
On B12, the vagus aids in digesting B12 from food by stimulating the stomach to secrete intrinsic factor, so a malfunctioning (or severed) vagus can lead to B12 deficiency. This is a wild guess, but it may be that if your supplements aren't being so absorbed, they may end up causing irritation to further exacerbate the tremor. I think I may get a similar exacerbation from eatings lots of carbs (as you earlier mentioned), and B12 is needed for metabolising those, so there could be something to the B12 deficiency thing. Perhaps sublingual B12 could help, per this person's experience from another forum: "Since taking daily sublingual B12 my lifelong inherited symptoms of heartburn, bloating, constipation have all disappeared and also my breathing, swallowing and anxiety issues have all but gone. I tried coming off B12 for 2 weeks and all my problems returned. I am now taking 2500mcg liquid B12 twice daily. I think all my symptoms are linked to the vagus nerve. My sister gets 3 monthly injections but her symptoms return before her next jab. I am ifab negative with first B12 level 164 and second 236, doctors are not treating me for B12 deficiency as my levels are 'normal'. I have to sleep with 2 homemade sleeves to stop me wakening with numb hands (it works) and hoping that my nerves will someday repair. I have lots of other b12 related symptoms."
b, thanks for the link. Interesting. It's good to know that "active 20V nVNS positioned directly over the carotid artery results in electric field penetrance that activates the vagus nerve." I've read elsewhere that the carotid should be avoided with TENS (along with the heart), so it would be worth proceeding with caution. Their max voltage was 24V. Their sham position of "far lateral" seems to be closer to my experiment, either side of the back of the neck. Not sure of my voltage, but it was lowest setting of a cheap TENS machine. I figure that while this works in this position to cut the tremor like an off switch, active therapeutic stimulation would need to be done cautiously over the carotid. By the way my method to secure the TENS was to remove the gel pads and use kinesiotape directly over the metal electrode clips. This can be more painful as the charge isn't spread out over the gel, but it is guaranteed to stay in place through the night. In hindsight I could probably tape on the gel pads.
A few things come to mind (in no particular order):
- There are some theories that if you're deficient in B12 (and other B vitamins) and you start supplementing, you could have some nervous system issues when you're nerves "wake back up."
- Sitting at the computer: I'm the same and so I now have an adjustable standing desk at work that I can use both while sitting and standing. I make sure to switch between the 2 positions periodically during the day. I also get up and go for a short walk about every 30 minutes.
- I've been trying a transdermal multivitamin patch from a company called PatchMD. I haven't had any tests in a while so I don't know precisely how the patches have affected my vitamin status.
- Recently, I started exercising more (mostly because it's now warmer in the NorthEast US) and my vibrations and sleep in general have gotten worse. Maybe I've irritated my vagus nerve by exacerbating my hiatal hernia or my neck problems? I'm now once again having feelings like I'm experiencing central sleep apnea. This gets me to start obsessing over whether this is indeed central sleep apnea caused by some vagus nerve dysfunction.
- I did a TENS treatment on my neck muscles a couple of days ago, but didn't see any affects on my sleep one way or the other. I haven't tried this *while* I'm having the vibrations yet. I also haven't tried tVNS via the ear yet.
- There are some theories that if you're deficient in B12 (and other B vitamins) and you start supplementing, you could have some nervous system issues when you're nerves "wake back up."
- Sitting at the computer: I'm the same and so I now have an adjustable standing desk at work that I can use both while sitting and standing. I make sure to switch between the 2 positions periodically during the day. I also get up and go for a short walk about every 30 minutes.
- I've been trying a transdermal multivitamin patch from a company called PatchMD. I haven't had any tests in a while so I don't know precisely how the patches have affected my vitamin status.
- Recently, I started exercising more (mostly because it's now warmer in the NorthEast US) and my vibrations and sleep in general have gotten worse. Maybe I've irritated my vagus nerve by exacerbating my hiatal hernia or my neck problems? I'm now once again having feelings like I'm experiencing central sleep apnea. This gets me to start obsessing over whether this is indeed central sleep apnea caused by some vagus nerve dysfunction.
- I did a TENS treatment on my neck muscles a couple of days ago, but didn't see any affects on my sleep one way or the other. I haven't tried this *while* I'm having the vibrations yet. I also haven't tried tVNS via the ear yet.
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 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.
9 Comments
Thanks. I have actually watched and read some Nemechek stuff, also. I can't do fish oil, it gives me bad histamine intolerance reactions. But the vagal nerve stimulator device he uses looked really interesting. If you go to AZ and pursue that, please do report back! I agree that we seem to have some autonomic dysfunction going on.
Nemechek feels that most histamine reactions to fish oil are due to "bad" fish oil. The histamine reactions are actually due to the histamine produced by bacteria in the fish oil as opposed to the fish oil itself.
Has anyone had their glycene level checked?
Helpful, thanks b. Early on, I was diagnosed with ANS dysfunction by a cardiologist (at that time I had spontaneous tachycardia), and with SIBO by a naturopath. I continue to experience the sense of very active production of intestinal/stomach gases (leading to belching and reflux). This is one symptom that clearly arrived with my sudden onset, and has stayed with me. If you recall, I had been gung-ho with various probiotics and ferments, thinking I was combating candida, and I had stupidly just taken an NSAID on an empty stomach (I'd hardly ever taken those so was ignorant in that regard, and this was the third day in a row of my three-day test). I was intending for this to combat perceived inflammation. Essentially I felt an issue in my gut and soon fainted. After that, the candida went rogue into my mouth and genitals, and I believe probably other pathogenic gut bacteria also went rogue, giving me SIBO (and possibly set up shop wherever else it could get to). A couple of weeks of adrenaline spikes and weird electrical sensations ensued, before resolving into something more on the level that is commonly described here. Incidentally, although I trace my issues to this dramatic onset, I also had experienced some of the similar buzzing while falling asleep about a year prior, during times of stress. Likely, whatever I had then at a low level suddenly got a whole lot worse, and then somewhat improved but never went away.
Just rehashing this because yes, in my case as well, the Nemechek model would make perfect sense. Something "active" in my gut is clearly involved, and I have certainly had symptoms of autonomic dysregulation. I'm off to get me some good fish oil and some Nemecheck info.
Just rehashing this because yes, in my case as well, the Nemechek model would make perfect sense. Something "active" in my gut is clearly involved, and I have certainly had symptoms of autonomic dysregulation. I'm off to get me some good fish oil and some Nemecheck info.
This all "fits" ricepeg. Probiotics and ferments can be exactly what you *don't* want depending on what is actually wrong with your gut. Although whether probiotics (and probiotic foods) are contraindicated with SIBO seems to be a matter of some debate. Which seems to be typical for just about anything having to do with the gut these days. I think that one of us (maybe it was you ricepeg) saw a neurologist who wondered whether this was some type of PTSD. I wonder whether these kinds of significant health "events" have caused some kind of PTSD which can also be associated with dysautonomia.
Beyond that SIBO and Candida can cause malabsorption which can lead to vitamin deficiencies (which I apparently have) which can lead to all kinds of neurological issues.
Now for the bad news. I started on a good brand of high DHA fish oil at high dosage and it may have kicked off some significant anxiety. It's always hard to tell with me. But I have seen posts from a number of people and one case study that indicate that some people have a problem with fish oil. It's never easy...
I see my functional medicine doc next week and I'm going to ask him if he's willing to prescribe a course of Rifaximin without making test for SIBO. Although I was also once diagnosed with SIBO, I'm not sure that the tests are accurate. At this point I feel like I just need to try things based on hunches rather than testing. It's going to be an expensive experiment as Rifaximin is not covered by insurance and will probably run me over $500 for a 10-day course.
Beyond that SIBO and Candida can cause malabsorption which can lead to vitamin deficiencies (which I apparently have) which can lead to all kinds of neurological issues.
Now for the bad news. I started on a good brand of high DHA fish oil at high dosage and it may have kicked off some significant anxiety. It's always hard to tell with me. But I have seen posts from a number of people and one case study that indicate that some people have a problem with fish oil. It's never easy...
I see my functional medicine doc next week and I'm going to ask him if he's willing to prescribe a course of Rifaximin without making test for SIBO. Although I was also once diagnosed with SIBO, I'm not sure that the tests are accurate. At this point I feel like I just need to try things based on hunches rather than testing. It's going to be an expensive experiment as Rifaximin is not covered by insurance and will probably run me over $500 for a 10-day course.
Have looked into Dr. Nemechek some more and am further encouraged to pursue it. His model accounts for the GERD-like symptoms as well.
My experience with being able to stop my vibrations abruptly with a tap to the head or back of the neck, and with the vibrations able to be induced any time of day by listening to a certain musical tone, strongly implies an autonomic dysfunction to do with the brain and vagal nerve signalling.
So I'm starting on the olive oil and quality fish oil (after understanding and accepting the reasoning for both), and am sourcing some Inulin while also planning to seek a prescription of Rifaximin (a unique antibiotic able to target SIBO, routinely prescribed also for treatment of traveler's diarrhea, including in advance of travelling abroad just in case it's needed–I do travel so I think this shouldn't be too hard to request). I'll probably just hold off for a few weeks on the Rifaximin however, which seems more of a nuclear option on the SIBO. Would like to give the other elements more of a chance to lay the groundwork. Once taken, though, I would hope to see a reduction in GERD symptoms. Then if the SIBO is in the causal pathway of the vibrations, then I suppose there would be some new hope that they might resolve. Dr. Nemecheck mentioned that around the age of 40-45 is when the scales seem to tip towards needing the vagal device to help in recovery. I'm 44, so have no real sense of that either way. Since in all our cases the vibrations seem to be able to improve, even completely in Toby's case, then perhaps the stimulation device wouldn't be needed by any of us (assuming that Nemecheck is on to something in our case).
My experience with being able to stop my vibrations abruptly with a tap to the head or back of the neck, and with the vibrations able to be induced any time of day by listening to a certain musical tone, strongly implies an autonomic dysfunction to do with the brain and vagal nerve signalling.
So I'm starting on the olive oil and quality fish oil (after understanding and accepting the reasoning for both), and am sourcing some Inulin while also planning to seek a prescription of Rifaximin (a unique antibiotic able to target SIBO, routinely prescribed also for treatment of traveler's diarrhea, including in advance of travelling abroad just in case it's needed–I do travel so I think this shouldn't be too hard to request). I'll probably just hold off for a few weeks on the Rifaximin however, which seems more of a nuclear option on the SIBO. Would like to give the other elements more of a chance to lay the groundwork. Once taken, though, I would hope to see a reduction in GERD symptoms. Then if the SIBO is in the causal pathway of the vibrations, then I suppose there would be some new hope that they might resolve. Dr. Nemecheck mentioned that around the age of 40-45 is when the scales seem to tip towards needing the vagal device to help in recovery. I'm 44, so have no real sense of that either way. Since in all our cases the vibrations seem to be able to improve, even completely in Toby's case, then perhaps the stimulation device wouldn't be needed by any of us (assuming that Nemecheck is on to something in our case).
Sounds like a plan ricepeg. My functional medicine doc agreed to prescribe Rifaximin as an empirical test for SIBO. In the US, Rifaximin is pretty expensive and health insurance typically won't cover it unless you have IBS-D, which I don't have. So I'll have to pay for it out of pocket. But I'm willing to do that and go for the "nuclear option" at this point. I still have some lingering digestive issues (including malabsorption as diagnosed by my functional doc) so this seems worth it at this point.
I'm still toying with the idea of going to see Dr Nemechek, but I'm going to try the above first. I'm seeing 3 different practitioners right now not including my GP and even though my interactions with the alternative medicine practitioners have been pretty positive, I'm just so tired of it all...
BTW, you can find instructions online for making your own transcutaneous vagus nerve stimulator including some mention of the settings Dr Nemechek uses. Search for "make your own vagus nerve stimulator healthrising" and/or "make your own vagus nerve stimulator phoenixrising"
Please report back on how you're doing on this protocol. I'll do the same after I do my course of Rifaximin.
I'm still toying with the idea of going to see Dr Nemechek, but I'm going to try the above first. I'm seeing 3 different practitioners right now not including my GP and even though my interactions with the alternative medicine practitioners have been pretty positive, I'm just so tired of it all...
BTW, you can find instructions online for making your own transcutaneous vagus nerve stimulator including some mention of the settings Dr Nemechek uses. Search for "make your own vagus nerve stimulator healthrising" and/or "make your own vagus nerve stimulator phoenixrising"
Please report back on how you're doing on this protocol. I'll do the same after I do my course of Rifaximin.
More info on vagus nerve stimulation and PTSD
Oops. I had meant to include a link in my comment of Feb 17. Now I can't remember which link that was. Sorry...
How is everyone? I am doing ok. Still no tremors, but experiencing memory issues. Sometimes my mouth doesn’t seem to work right. My face feels tight. Not sure if it is related.
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I'm glad you are ok. I'm sorry about the memory issues and mouth and face. I can relate to memory issues, those began for me maybe two years ago. Mouth not working right I can also relate to, as I feel like when I chew food, my chewing is uncoordinated. It feels as though I'm about to bite my tongue. And in fact I do bite my tongue more often. I also feel a lack of coordination descending stairs. I'm not sure about the face feeling tight. You mean the skin of your face? Or the muscles?
I have not posted in some time. I still get the tremors, though if I keep carbs low they improve. Too bad I cant keep carbs low and maintain energy! The other surprising factor that affects tremors that I've discovered is vitamin B12! If I take a B12 supplement, or eat something particularly high in B12 like beef liver or kidney, I get bad tremoring for the next day or two during sleep. I cannot fathom why, but it's very consistent.
I have not posted in some time. I still get the tremors, though if I keep carbs low they improve. Too bad I cant keep carbs low and maintain energy! The other surprising factor that affects tremors that I've discovered is vitamin B12! If I take a B12 supplement, or eat something particularly high in B12 like beef liver or kidney, I get bad tremoring for the next day or two during sleep. I cannot fathom why, but it's very consistent.
The B12 connection is interesting. I'm not sure whether I've experienced that or not. B12 can certainly be stimulating so I wonder if we're all just very sensitive to any kind of stimulant which results in increased tremors. If you poke around phoenixrising.me a bit you'll see some theories that supplementing with B12 when you've been low in B12 can ramp up methylation to a point where some people experience symptoms (neuropathies, anxiety, etc) due to sudden increased energy production. You might try supplementing with vitamin B2. I can't explain that carb connection unless this too has to do with sudden increased energy production.
Thanks. I actually do take B2, three times a day, 25mg, for migraines, and it helps hugely. I've been doing that for a long time, now. It doesn't seem to help me tolerate B12 any better. I am experimenting with lithium orotate, since lithium is supposed to help with B12 utilization, and I've done hair mineral tests that always show undetectable levels of lithium, indicating that I need it. Too early to report results on that. I'm glad you've got no tremors....that's something! I can sure relate to the memory issues, and I'm only in my mid 30s. Super frustrating. I do believe we can heal from all of this. The solutions are out there.
My face on one side is chronically tight, both in the jaw muscles and further around towards the nostril, where I believe it affects sinus drainage. I do periodically bite the inside of my mouth (mostly left). This is all because my jaw is lopsided, and hence I have right-side ear pain and TMJ (and tinnitus). And that's because my head is lopsided, with a lot of right-side neck tightness and some shoulder issues. And so the compensations keep going downwards, affecting the positioning of my rib cage, breathing muscles, pelvis, etc. I do wonder whether this situation has compressed an important nerve, such as the vagus nerve in the neck area. One would think that constant/frequent pressure/impingement could create a dysfunction. At the very least, my postural distortion (and associated pain and lack of mobility) have contributed to higher levels of systemic stress. I might not be a stretch to call it mild trauma, which raises the possibility of mechanisms of PTSD. My cardiologist suggested I may have that, as my symptoms sounded similar to a PTSD patient of his.
sorry for my writing and spelling i'm not much for writing and can't figure out to even edit the spelling
I have same face tension and other symptoms like the shaking in my head and body as i'm trying to fall a sleep i also have Toby1101 high blood count they said it can be caused by a slow growing blood cancer called polycythaemia vera treatment is where they drain blood from you i have not seen the blood doctor yet for this i also have gastroparesis (food sits in stomach) also acid reflux and they say i have fibromyalgia snf snxiety but it all seems food or digestion related some other symptoms i have is burning eyes and mouth,leg and arm weakness,short of breath,left ear ringing, get hot in the face,burning in lega and arms like lava running threw my veins feels like some bad hang over or something, light white tongue, numb tingly hands, back feels like i been beat with a base ball bat, shoulder pain, brain fog, thristy and tired after eating sometimes and so much more high dose vitamin d worked to help me for 4 years not it not working been going threw this for 5 years like to hear back from you
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
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
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That's helpful enough, thanks b. I've had those arms, though not for a long stretch I don't think. Maybe I should try to have my B levels checked. I've lost track of all that.
OK, so it looks like we're now getting notifications on new comments as well which is very helpful!
If you do get your B levels checked, remember that blood levels don't tell the whole story. You can have perfectly fine (even high) blood levels of the B vitamins and still be functionally deficient. In other words, the vitamins are not getting into your cells. This is not a view shared by most conventional doctors. However, if you're blood levels of B vitamins are low, then you're definitely deficient. You can probably search for "B vitamins functional deficiency" for more information.
At the very least, if more of us "vibrators" could do tests like this, we could try to determine additional commonalities.
BTW, I seem to remember that you were diagnosed with sleep apnea and were going to start on CPAP or playing the digeridoo. What's the latest on that?
If you do get your B levels checked, remember that blood levels don't tell the whole story. You can have perfectly fine (even high) blood levels of the B vitamins and still be functionally deficient. In other words, the vitamins are not getting into your cells. This is not a view shared by most conventional doctors. However, if you're blood levels of B vitamins are low, then you're definitely deficient. You can probably search for "B vitamins functional deficiency" for more information.
At the very least, if more of us "vibrators" could do tests like this, we could try to determine additional commonalities.
BTW, I seem to remember that you were diagnosed with sleep apnea and were going to start on CPAP or playing the digeridoo. What's the latest on that?
haha, oh yes, I already sold the didgeridoo. Partly since I didn't realize that it requires wax on the mouthpiece to work well, but that's another story. In my case the sleep apnea was apparently caused by reflux. At least, I was able to virtually eradicate my significant snoring by raising my bedhead. When I travel and stay in hotels I usually pull out a drawer and put it under the mattress. I still need to do another sleep test to prove that the apnea has resolved. That seems advisable, because if I have a car accident I could become liable on the basis that the last test says I have apnea.
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.
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.
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.
6 Comments
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...
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.
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.
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.
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. //
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.
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.
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.
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.
20 Comments
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
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.
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.
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."
"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.
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.
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.
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.
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 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.
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.
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!
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.
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
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.
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