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.
I'm so sorry to hear that Toby. At least she didn't say that it was all psychological.
Although the functional medicine doctor I'm seeing hasn't figured out a solution to this particular problem yet, he has helped some. You might want to consider finding a functional medicine doctor in your area. Clearly, traditional medicine isn't going to find the cause of this problem. I wish I had better advice for you (and us all). As always, I'm going to continue to monitor this thread and post anything I find out.
For now, here's a few more questions to see if there are any commonalities for anyone else with this problem. Still hoping that others will find this thread and way in:
1. Do you have a hiatal hernia?
2. Do you experience any GI problems during this vibration episodes? Upset stomach, stomach pain, reflux?
3. Do you have a sore throat or hoarse voice?
4. Do you experience any anxiety when these events occur? How long does the anxiety last?
5. Do you feel like your throat may have constricted briefly just before you wake up with vibrations?
6. Do you ever get these vibrations while awake or does it just happen during sleep or as you fall asleep?
7. Does it happen even if you fall asleep sitting up?
I do not have any of these. Tremors only when sleeping now,but tremors do not stop when I wake in middle night. The only stop if I stay awake or get up. Tremors are now focused down arms and shoulders. My stomach has been good for quite some time.
Thanks for responding. You know since this only happens when you're asleep (and since we both were originally convinced that this was central sleep apnea), I'm surprised that no doctor you've seen including the latest neuro has recommended doing another sleep study.
1. No, I do not have a hiatal hernia
2. No GI problems when having an episode; however, I did have silent reflux for awhile, but not during having an episode.
3. I do get hoarse, which may mean I still occasionally have silent reflux, or it may be a symptom of being hypothyroid.
4. No anxiety after the first few episodes
5. No sensation of my throat constricting
6. I did get them ever so slightly when awake, but hardly noticed them.
7. Yes, I would still get them when trying to sleep sitting up. The only thing that finally helped me was sleeping with a very flat pillow and stretching the back of my neck by tucking my chin towards my chest.
The Iodoral (Dr. Brownstein's recommended iodine supplement) is doing wonders for my sleep. I would really like to encourage both of you to give it a try. I am hoping and praying it will be a big part of the missing piece to this puzzle for you like it seems to be for me. I divide the 12 mg pill so that I am taking about 3 mg. daily, but you may need more or even less to start out.
My thyroid medication was reduced down from 2 1/2 pills to just 2 pills daily and I feel it is because of the iodine I am taking. I know you two are not hypothyroid, but if you are iodine deficient, which according to Dr. Brownstein, most of us are, I am hoping this just might help with your vibrations, which would help you get a full night's sleep.
It also is supposed to help keep from becoming diabetic, another wonderful plus.All I know, is it seems to be working wonders for me and I am so grateful. I order mine from Amazon.
I would be interested in hearing what you think if you decide to give it a try.
For me the answers are as follows:
6: Yes! When they were very intense I also had them occasionally when awake. That really sucked. Also, the more intense the tremors the longer it would take me to feel “right” in the morning.
7: Unknown - don't think I ever fell asleep sitting up. They would happen during naps though - even a 10 minute nap and I'd be shaking.
My tremors have been primarily in the neck and arms.
For me I can trace all of this back to GI problems that started when drinking tea purchased in China that was contaminated with something. The night after drinking it I developed an all over body rash that lasted for a week and my GI went kaput. That was 3 & 1/2 years ago and it took me until just recently to get my GI working well again.
About 3 months after the tea I began having all kinds of weirdness including the beginning of the sleep tremors. Many, many dr visits over the years for all aspects of this proved to be remarkably useless. Because I could point to a specific trigger I chose not to go down the recommended path of neurologists, MRI's etc.
Ultimately due to the GI issues I ended up with a lot of nutritional deficiencies and I'm almost positive that the tremors are a due to some type of nutritional imbalance. Unfortunately it turns out that drs don't have much useful input in this area - even naturopaths which to me was quite surprising/disappointing. My issue was never getting enough proper nutrition into me - it was an absorption problem. And unfortunately there's not much in the way of reliable testing for nutritional status. I've been researching all of this extensively on my own over the last couple of years and have found some specific things that seem to help quite a bit.
My focus has been on sodium, potassium, calcium & magnesium. Tremor can be a symptom of almost any electrolyte imbalance however for me it wasn’t as simple as just taking a few supplements. I tried supplementing each individually without too much success. Potassium seemed to be a good thing. Sodium & magnesium made no real difference. Calcium however seemed to make things worse. I tried calcium several times over a 1 year period and each time it seemed to make the tremors worse. To me that didn’t make a lot of sense because tremor can be a symptom of low calcium which is why it took me quite a while to make this connection.
Through trial and error I’ve found that supplementing magnesium (600 mg magnesium glycinate/day) eating a high potassium diet (4.7g is the recommend daily intake which takes some work to get to) and minimizing calcium intake seems to have really helped. My tremors are minimal now (more like a slight quiver) and on a good night I don’t have any at all. I used to have tremors within an hour of falling asleep and then on and off throughout the night with most intense ones in the morning. It used to take a few hours in the morning before I would feel “right” if the tremors were intense. Now all of that is pretty much resolved – just a minor tremor in the morning only that I wouldn’t notice if I hadn’t been focusing on this for so long.
My guess at this point is that I’m actually low in magnesium and since calcium is a magnesium antagonist the calcium would drive the magnesium lower? And apparently low magnesium can cause issues with potassium. Logically I struggle with that because I’ve tried magnesium numerous times over the past 3 years without much of a difference – but without paying attention to calcium/potassium intake. I’ve been taking magnesium and getting a lot of potassium for 3 months or so now but just recently (last couple of weeks) have minimized calcium. That seems to make the most immediate and noticeable difference.
All of that being said…I still can’t say for sure that this is the cause/solution. About a year and a half ago the tremors disappeared for 6 months or so. All was good…then the tremors slowly reappeared. So this could all be a coincidence however due to the noticeable increase in tremors with calcium supplementation I think this may be a real link. Time will tell.
I’d be very interested to hear if calcium supplementation has a negative impact of anyone else’s tremors. I was taking 1,000-1,500 mg/day. I noticed an increase in tremors within a couple of days. I tried both calcium carbonate (Tums) and calcium citrate with the same reaction to both. I believe I can also tie the times of the worst tremors in the past to high yogurt consumption for my GI issues. My best guess is that it’s not a calcium problem per se but rather the intake of calcium is make an existing imbalance worse.
Thanks Mike that's really good information. I have tried magnesium and calcium and neither seem to make much difference. I will give potassium to try and keep up with the magnesium and see what happens. My trimmers seem to be predominantly in my neck and arms. I'm just curious what is your normal body temperature. Mine is usually around 97°F. If I sleep with a T-shirt on and keep my shoulders and neck warmer it seems like it helps keep the trimmers to a minimum intensity. I haven't done this long enough to validate it though.
For potassium I've been eating a lot more potassium rich foods - bananas, orange juice, coconut water, potatoes, etc. The downside is that it seems most foods that are high in potassium are also high in carbs and/or natural sugars.
In addition to the foods I've been mixing NuSalt into water along with a little salt. NuSalt is potassium chloride. I'm not sure how well absorbed it is so I tend to lean more towards foods. Plus too much potassium in the body is not a good thing. That being said, I seem to feel a bit better with more potassium rather than less - so I'm fairly liberal with the NuSalt. I'd go slow with that though to make sure you don't have any negative reactions.
Since all of this nonsense started I've had 2 things that seem to be connected but I'm not sure exactly how. Tinnitus and palpitations. I had neither before all of this fun stated and for that 6 month period without tremors I had no tinnitus and no palpitations. So there's definitely a connection. Now they are both minimal.
Since I started upping the potassium I've noticed that my tinnitus had decreased - in fact I'm using that as somewhat of a marker for my potassium levels. On a good day I'll have no tinnitus - at least for periods of time.
Body temp - not sure. A few years ago with all the GI fun I did notice it was low - no idea why - thyroid was fine. Haven't checked in a long time though - I'll dig out the thermometer and let you know.
Magnesium - what form are you taking? I've tried a number of different ones and for me glycinate in capsules (Solaray) seems to be best absorbed.
Excellent info Mike. Thanks!. Definitely some things in common with you. My problems started after a really bad reaction to an antibiotic called Cipro. And then maybe got worse after a presumptive diagnosis of Lyme by a Lyme MD who treated me with additional strong antibiotics for a month. It was supposed to be 2 months, but I quit after a month. Antibiotics destroy the good and bad bacteria in the gut and I've had some significant GI problems for many months which are just now starting to die down. I had some additional issues that seemed neurological in nature which also went away.
Just like you and Toby, I'm now left with tinnitus and the sleep vibrations. My body temp also tends to be low (97s). I also went through a couple of periods of having heart palpitations (afib). These episodes tended to coincide with some GI issues. For example, I would most often get them after dinner especially if I lay down and this would be accompanied by some reflux. I wore a Holter monitor for 48 hours which caught a number of episodes. The cardiologist I saw called it "vagally mediated afib" and said it wasn't serious. He also acknowledged that there's some connection between afib and reflux that is not well-understood. Anyway, I haven't had any afib episodes (which also tended to wake me up in the middle of the night) in a while so that's a relief.
I also take Magnesium which helps a bit, but not enough. I'm taking about 800mg of Mag Glycinate before bed. The calcium connection is interesting. Until recently, I was also pounding yogurt in order to help with the GI problems. So that's potentially lots of calcium. I haven't had any yogurt in a while because I just haven't gotten around to buying any and now that I think of it, my vibrations have reduced in intensity a bit. So that's very interesting...
I was also on a pretty low-carb diet because I was having trouble controlling my blood sugar (probably due to lack of sleep). I recently said screw it and had some potatoes so maybe the potassium also helped with the vibrations. I seem to remember Toby mentioning that his vibrations are worse when he eats sugar. Aside from being excitatory, sugar can also cause gut problems if, for example, you have some sort of yeast infection (like Candida) brewing...
The whole GI connection is very interesting. As you may know, there are lots of medical practitioners now who believe that gut health is everything. And that gut dysbiosis is the root of all sorts of diseases from IBS to auto-immune diseases and alzheimers. For a while now, I've believed that the sleep vibration thing is some sort of vagus nerve dysfunction. The vagus nerve runs from your GI system to your brain. This is why I think (at least for me), deep diaghrammatic breathing exercises stop the vibrations within about 10 seconds. It would also explain the heart palpitations which even the cardiologist referred to as "vagally-mediated". It would also explain why this often feels like a breathing problem. And it may actually be a breathing problem since autonomic nervous system functions (like breathing during sleep) are controlled via the vagus nerve.
Lastly, I just wanted to say that my symptoms are very similar to yours Mike. My vibrations are also worse early in the morning (between say 5 and 7 am). I also feel "out of sorts" in the morning and the worse the vibrations, the worse I feel and the longer it takes for that feeling to wear off. For me, this typically involves some amount of anxiety and just sort of feeling disconnected and confused. Of course, sleep deprivation itself could contribute to this and to other issues we're experiencing.
So I'm going to try boosting my potassium a bit and reducing calcium to see what happens.
Sorry the above was so disconnected. I'm writing this at work and trying to do multiple things at once with a brain that is not functioning as well as it used to.
Again, thanks for the info Mike. I think this has been the most encouraging exchange we've had since we all joined this thread.
Toby - 1 easy source of potassium I forgot to mention was low sodium V8.
Does anyone have issues with frequent urination? There seems to be a correlation between how much I'm shaking and how many time I have to get up and pee at night. Yet another thing that has pointed me towards electrolytes. I can say with some level of confidence that when I pee more I shake more and vice versa.
How about protein? I recently came across something that talks about how protein is needed for electrolyte balance. I'm fairly active - some type of fairly intense exercise daily - and I've been told that I should probably be getting more protein than I am. I never really paid much attention to grams/day so I can't say exactly where I was at - but I agree that it was probably less than I should have been getting.
I picked-up a protein supplement (plant based to try something different) from the local health food store about a week ago. While I was in there the lady gave me a sample of a liquid magnesium.
I tried both and have noticed an improvement. Because I did both at the same time I can't say which made the difference but I'm happy to continue both for a while to see what happens. I've read and been told numerous times that magnesium can be a bit tricky from an absorption standpoint - everyone is different and some have better luck with one form over another.
Urinating is part of the fight-or-flight response of the sympathetic nervous system. I think the vibrations are a type of stress or anxiety reaction and so part of that could be increased urine output. This comes and goes for me. When the vibrations are at their worst, I tend to have to get up and pee. This is not to say that the vibrations are "just anxiety" as one neurologist said to me.
Which liquid Mag did you try? I tried one the "ionic" liquid Mags a while ago, but didn't notice much of a difference. Maybe I'll see if I still have some and try it again.
The sample I got was by Trace Minerals and just says Liquid Magnesium 300mg. From what I can tell it's magnesium citrate with a bit of chloride but it's tough to tell from the bottle. I went to buy it and they are out so I ended up trying Ionic Magnesium also by Trace Minerals. I haven't noticed a difference between the 2. I'm not sure what that means - maybe the additional 300-400mg of magnesium is what I needed (for a total with the glycinate of 1,000mg or so), I'm absorbing the liquid better or it's the protein. Once things "settle out" I'll experiment a bit and see if I can figure out what is making the difference. Could be none of the above - just random chance - wouldn't be the 1st time.
Sympathetic/parasympathetic - yeah, I've had those same conversations and am somewhat in agreement however I don't believe that to be the root cause. In my opinion something is out of balance possibly causing a sympathetic/parasympathetic imbalance. I have absolutely no feelings/signs/symptoms of anxiety with the tremors. However, I don't think that rules out some type of sympathetic/parasympathetic imbalance - I suspect that can manifest in any number of ways. But if this is the case then I keep going back to why. What is the root cause?
My trigger was GI so I keep coming back to nutritional imbalance caused by absorption issues. Or possibly dysbiosis causing who knows what reaction in the body?
I can say with almost 100% certainly that my tremors are related to my overall feeling of health. I like being physically active and tend to push myself. I do a bootcamp style workout 5 days a week and can use that as somewhat of a benchmark since the intensity is pretty consistent. Looking over the last year and a half I can say that when my tremors are minimal (or gone for that 6 month period) the bootcamps seem easier and my recovery is much better/faster. When the tremors are more significant I struggle much more.
Thanks Mike. I agree with a lot of what you say especially regarding gut dysbiosis. I've been seeing a functional medicine doctor who has run a couple of "poop tests" that show that the bacterial balance of my gut is way out of whack. Now whether those tests can be believed or are particularly diagnostic of anything I don't know. However, I *do* believe in the importance of gut health to overall physical and mental health. I've been taking probiotics and eating probiotic foods to help that. I went off the wagon a bit and ate some bad stuff not too long ago which may (or may not) be contributing to my most recent flare-up.
As to the anxiety part of this...well...I tended to be a bit stressed/anxious even before this happened so it's probably not a surprise that the vibrations and lack of sleep (and maybe gut problems) have exacerbated that.
I also like to exercise although not at the boot camp level. For me, I've thought that overdoing my exercise routine might actually cause an uptick in the intensity of my vibrations. I haven't kept track of that well enough to know for sure. Too many variables. For example, my only son just went away to college and I'm pretty anxious about that. So I upped my exercise which often helps me deal with anxiety. So did my vibrations increase because I'm more anxious or did they increase because I over-exercised? Or because I ate lots of gluteny, sugary things a week ago? Really hard to tell...
Just an update. I've been trying a liquid mag for a few days. This is Mother Earth Minerals Liquid Magnesium. I haven't noticed any difference. In fact, the Mag Glycinate might have been a bit better at helping me sleep. I was running low on Mag Glycinate and the two stores I went to were out. However one store had Mag Taurate. Taurine is a GABA precursor and supposedly has a calming effect. So I bought some of that and started with it last night. Too early to tell whether it's better than anything else, but I'll report back in a few days.
I'm very curious to see if the magnesium taurate makes a difference. Back before I gave up on drs for all of this one naturopath was thinking along the lines of GABA. He had me try Zen by Allergy Research Group but unfortunately it didn't work.
I've considered exercise as a possible trigger but have more or less dismissed that. I was paying attention to that possible connection for a while but couldn't make any type of correlation.
GI - that took me a long time to get straightened out. I think the most effective thing was 2 tablespoons of apple cider vinegar (Braggs) in water 2 or 3 times/day. Unpleasant at best...but seemingly effective. In general I never found probiotics to be terribly effective - I'd say the best was VSL 3 but even that didn't seem to do an awful lot. Lots of trial and error.
GABA is a really good guess, but difficult to treat. One class of people who seem to get the vibrations a lot are those who are going through benzodiazepine withdrawal (you've probably done all the same Google searches I have). Use of benzos is known to shut down the GABA receptors causing all sorts of neurological problems. Unfortunately, use of GABA is controversial because it also might shut down GABA receptors and many docs say that GABA supplements don't cross the blood-brain barrier anyway. I suspect that benzodiazepines would be helpful in reducing or eliminating the vibrations. But I've used them before (prior to the whole vibration thing), got addicted, and had a tough time weaning off of them. Having said that, I still might have to consider using them judiciously to get back some quality of life. It's all a trade-off.
I'll give the Braggs another try. I have another "poop test" coming up to see if there's been any improvement in my gut by that measure.
Taurine rang a bell when I was replying last night and I looked through my stash of supplements and sure enough at one point in time I purchased a bottle but never opened it. It's been a while so I don't remember why I didn't give it a try - must have gotten sidetracked with something else. I'm currently having pretty good success with what I'm doing so I'm going to stick with that until things settle out and then go from there.
"Poop test" - are you doing Metametrix? That's the one that seemed to provide the most "valuable" info for me. I have "valuable" in quotes because I'm not sure that the info itself has a lot of value - it's detailed but I just don't know if what it's measuring is of true value. I did a conference call with them via my dr to better understand what I was looking at and still have mixed feelings. I was low in the "good" and relatively high in yeast/fungi but the type of yeast/fungi was unknown so "possibly/probably ingested" was the determination on that. However it was the only thing I had to go on so I followed the candida protocol for quite a while and tried nystatin, fluconazole, garlic, caprylic acid, etc along with the essentially low carb diet. Those were some tough times with lots of up and downs for no apparent reason. Let me know if this is the path you're going down and I'd be happy to share more info/thoughts. Ultimately Braggs seemed to do the trick for me but other things helped to varying degrees. It was a long process though.
Benzos or similar - I chose not to go that route. I just fundamentally didn't agree with the drs that this was an anxiety issue and I didn't want to get sidetracked trying to chase something that at every level felt wrong to me. Plus I've done a lot of Internet research and reading threads like this one convinced me that the answer wasn't going to be found in an MRI, anti-anxitey meds, etc. Between the GI fun being the beginning of this and following everyone's experiences in trying to address the tremors (I'd like to thank Toby in particular for his detailed info) I was/am convinced that the answer for me is an imbalance caused by absorption issues.
After reading about Toby's Mayo visits I was essentially 100% convinced that the answer has to be in areas where conventional medicine isn't looking. If a couple of visits to the Mayo Clinic didn't uncover the cause then what are the chances a dr around here would find something that Mayo missed - slim to none. So that why I chose to go the naturopath route but even that has been disappointing.
Following that same logic, I do believe that we are to one degree or another dealing with the same thing and I suspect/hope that when someone finds the answer that it will help everyone who is dealing with this.
I went to neuro today for a MRE. The neuro said that it is impossible for the brain to cause tremore while sleeping. I told him that I don't know for sure that I have tremors because I am sleeping. He sent me home with a prescription. I cannot read the name. Similar to Lorazepam.
He kept asking for Mayo's diagnosis. He couldn't accept that they didn't have one.
I will give the pills a try but know it's not the answer.
Toby, just because the brain is not causing this doesn't mean that it's *not* a neurological issue. And these days, what constitutes a neurological issue vs an issue with the gut seems to be debatable. The whole gut/brain connection thing is gaining lots of traction these days. I'll be interested in hearing how the benzo you've been prescribed works for you. It probably wouldn't hurt to at least give it a try. At some point, we may all have to admit that (even alternative) medicine doesn't have the answer to this one and dealing with the symptoms is the best we can do. I suspect that even if some neuro did acknowledge this problem and even if he said it was the brain causing it, and if you don't have any sort of tumor (which apparently you don't), the end result would still probably be a benzo prescription.
Mike, yes I'm doing the Genova (formerly Metametrix) GI Effects test. Mine also showed a severe imbalance between the good and bad bacteria. Whether that's really the cause of any of my problems, who knows. I will say though that most of my specific GI problems have gone away after some treatment with probiotics, diet change, etc. For a while, I couldn't eat anything at all. I'm actually scheduled to do another GI Effects test in the next few weeks. And yes, I'd be happy to hear any further thoughts you have on this. W/r/t taurine, it's supposedly a GABA precursor which might be helpful.
The other thing I'm pursuing is mercury toxicity. I think I mentioned this way back in this thread somewhere. This is yet another controversial area. Mercury toxicity is known to cause numerous issues affecting the GI and nervous system. But conventional and complementary medicine differ on what is considered toxic levels and on the appropriate course of treatment. My mercury levels as measured on 3 different tests were pretty high. Not stratospheric, but high enough that my functional doc felt that it should definitely be treated. I've done two rounds of chelation therapy. The first brought my level from 28 to 17. But after the second round it went back up to 21 which the doc said was effectively "no change." According to the tests, half of the mercury in my body came from ingesting it (I used to eat a LOT of sushi) and the other half is probably from amalgam dental fillings. The dental filling thing is yet another controversial area. So my functional doc suggested that I have my amalgam fillings removed and then try another round of chelation therapy. And so this morning I have an appointment with a "biological dentist" to talk about having that done.
There was a time when I would have thought that all of this was complete voodoo medicine. But as we've all agreed, conventional medicine doesn't have the answers to our particular problem. (I still go to my GP for a yearly physical, but I don't discuss this problem with him anymore.) And through lots of research (most of which I bet you've done as well), I believe that conventional medicine doesn't have the right answer to many problems. So is the whole gut/brain thing real? Are amalgam fillings really poisoning us? It's hard to say, but I'm more than willing to explore these avenues at this point. And for me, in the background is also the possibility that this is Lyme. Or maybe I have toxic mold in the house. All areas that are controversial and difficult to diagnose and treat.
Let's keep the discussion going guys. Thanks everyone for spending time on this.
I am taking Clonazepam.5 mg rampant to 2mg over a month. Not real fond of messing with my brain chemistry though.
I had a few days recently that I fell off the wagon on sugar intake. Have had a couple tough nights. Pretty sure that sugar pisses this condition off.
I am trying to get potassium ramped up but not seeing change yet. It takes a while to absorb though.
I was tested for heavy metals, but all well within normal range. I do have tons of amalgam fillings though.
I have had blood tests that two doctors ordered that had conflicting results taken two days apart. Not sure the accuracy is the greatest at the labs.
It is hard to believe that this blog is almost 7 years old and no one has the answer yet. Still wondering what happened to bobito. Having a doctor and a psychologist for sons was the best situation to be in.
Since my last post I had 1 somewhat rough night - tremors right after I fell asleep and then throughout the night and into the morning. I looked at what I did differently that day and I did slack off a bit on the magnesium/potassium but I really struggle with the idea that I'm that sensitive to minor electrolyte intake fluctuations.
When I looked at everything the one thing I did realize is that my sodium intake has been low for a while and very low for a few days before that. I know the tremors are not caused directly by sodium because I was unable to impact them by changing sodium intake a while ago when I was looking at that specifically. However, I do wonder about electrolyte balance.
Based on the discussion about magnesium taurate I did look into taurine again and there's a connection between taurine and electrolytes so I decided to try it...and I do believe it has had a positive impact. It's only been a 3 days but 2 of those 3 nights have been essentially tremor-free and my overnight recovery from exercise has improved (interesting and completely unexpected).
Based on those positives I decided to dig a bit more into taurine and see what I could find. From what I can tell it helps keep magnesium & potassium in the cells and has some relationship with calcium. I also came across a few articles that talk about bacterial/fungal infections causing a loss of taurine - candida was mentioned in particular. Here's a quote from wisgeek - "Some bacterial and fungal infections, such as candida, interfere with the body's taurine-producing complexes". Here's one from bodyecology - "If you have this systemic fungal infection [candida], it produces an amino acid, beta-alanine, which competes with taurine for reabsorption in the kidney."
While I'm a fairly skeptical person by nature and in particular when it comes to things like this I do find it interesting that there appears to possibly be a GI unhappiness/taurine connection.
I also came across some info on taurine and tinnitus.
Then of course taurine & GABA which in and of itself could be important.
It's so difficult with the tremors to try to determine cause and effect so I really have no idea if there's anything here with taurine but as with most everything I've looked at over the last couple of years, if there's no real downside I'll generally give something a try if it seems to make logical sense.
Have you noticed any difference with the magnesium taurate?
As far as GI info goes - most of my time was spent on the assumption that the yeast/fungal overgrowth needed to be controlled - so I have a lot more thoughts on "killing" rather than rebuilding. I didn't see much in the way of results from probiotics and I tried a lot of different ones. Nancy's probbiotic yogurt definitely seemed to help - it can be a bit tough to find depending on where you live. Sauerkraut also helped - started with Bubbies and then made my own. All that being said, Bragg's & water seemed to be the most effective - since I did that for a couple of months everything seems to be much happier and I've almost completely slacked off on probitoics/sauerkraut, etc without any problems. Also, my diet went from carb restricted to "normal" to get more natural potassium. So OJ, potatos, bananas, etc and no GI problems. I don't know if the low carb, etc was necessary or if my GI is finally to the point that things are balanced and the added carbs are getting processed "normally" now vs possibly causing issues before.
I was also tested several items for heavy metals - I tested slightly high for nickel but that was it. And only 1 filling - so I don't believe mercury is involved for me.
Prior to all of this nonsense I generally knew that our medical system wasn't great but assumed that if I really needed it to work that enough determination would yield satisfactory results. After many, many disappointments I've come to realize that while straightforward things may be handled well (strep) anything more complex seems to be a real problem. And I've found that drs are shockingly quick to "blame the patient" - it's all in your head (stress/anxiety), malingering, etc. You'd think they'd be ashamed to collect $$$$ for that type awful service - worse than Comcast (who even knew that was possible). I could rant on for hours about this but I'll leave it there.
Toby, if sugar exacerbates this problem, then it could be some sort of reactive hypoglycemia. Your blood sugar level spikes after eating sugar and then dives while you're asleep. I guess that would depend on how long before bedtime you ate the sugar. Hard to say. How is the Clonazepam working out for you so far?
Mike, I think I've noticed a better effect from the Mag Taurate then from the Mag Glycinate. When I say better effect, I just mean my sleep is a bit better and my anxiety is lower. Nothing I've tried seems to significantly reduce the vibrations (which are highly variable in intensity anyway). The night before last I had a particularly bad night and a pretty bad day following that (anxiety higher, tinnitus louder, etc.). I ate a bunch of popcorn at the movies (something I rarely do these days) so was that a contributing factor? I also used Mag Glycinate instead of taurate that night.
I'll try to find Nancy's yogurt. I had been eating a good quality sheep's milk yogurt from a local company, but I stopped that for a while thinking that even the sheep milk might be giving me problems. I'm also eating Bubbie's sauerkraut which I love. All of these things plus probiotics plus laying off sugar I believe have helped my GI problems. It'll be interesting to see whether my next GI Effects test shows progress as well.
Couldn't agree with you more about the current state of medicine. I stopped talking to my GP about this a while ago. He was also very quick to say that he wasn't going to be able to diagnose or treat this problem and it was probably "just anxiety." And he's actually said to me on occasion while trying to get me to take some drug, "my drug company rep says this is a very good drug." So now our doctors are getting treatment advice from salesmen?
I'm glad that there are functional medicine doctors around who take a more holistic view of things. But although I'm lucky enough to be able to afford to see one of these doctors, most people are not. I hope that the functional medicine movement makes headway. I think that an approach somewhere between functional medicine and current traditional medicine is the way to go. For now, we just have to become educated, use doctors as "advisors", and be responsible for our own healthcare.
A good read is Thinking Outside the Pill Box by Ty Vincent MD. It's a long book but very interesting. He talks a lot about the drug companies impact on how medicine is taught/practiced. He also talks in detail about actual data from various studies vs what is "common knowledge" from those studies and how those are often very different. Lots of good general health info and condition specific info as well.
b12 - anyone see a connection? I was getting weekly b shots a couple of years ago and somewhere around then is when things got to be pretty good. Not sure of the exact timeline but I remembered that this morning and wanted to throw it out there. I've also been talking low dose methyl folate and methyl b12 for the last few months and the tremors have been better than they have been at most points in time since all of this nonsense started. My focus has been on electrolytes for a number of reasons but maybe there's something with b12?
B-12...maybe. Have you read about the whole methylation cycle thing and the MTHFR gene? Short story is that many people have a mutation in the MTHFR gene which makes them "poor methylators" which means among other things that they have difficulty clearing toxins. I have that gene mutation. It's pretty involved so I'll let you read about it if you want. Short story is my functional doc also had me on methyl B12 and methyl folate supplements. Because of some recent research he became aware of, he switched me to another form of B-12 called adenosyl/hydroxy-cobalamin. I admit that I haven't been taking either of the B-12 supplements consistently and that's probably a mistake. So yeah, a deficiency in B-12 and methylation problems are often implicated in various health issues these days. Unfortunately, I don't have anything solid to tell you about whether they helped me or not.
For what it's worth, one thing that gives me some slight relief is Doxylamine. I may have mentioned it in this thread a while back. Anyway, it definitely helps me get to sleep and may help me get 1 or 2 hours additional sleep. It doesn't stop the vibrations, but I think it helps me fall back to sleep when I wake up with them. I also feel like the anxiety is not quite as great in the morning when I've taken a Doxylamine. This and the fact that some have had some success with Amitriptyline still leads me to believe that some sort of histamine/mast cell disorder is involved here. And that this is really an anxiety reaction to some other disorder. But that could just be specific to me. I have symptoms that the rest of you don't have.
I've heard good things about a dr in the area so I finally decided to go and see him today. My tremors continue to be minimal these days however they are still there so I decided to give the whole dr thing 1 more shot.
I had an hour + visit with him so we covered a lot of ground but even then we ran out of time before everything had been discussed (lot of history/things done already). I ended up steering the discussion towards electrolytes so that we would have enough time to cover that. He's going to order a RBC magnesium test, a RBC zinc and possibly a calcium test that he wanted to research a bit..
He also recommended that I try something for adrenals. I have Gaia Adrenal Health here and he felt that was fine. So I'm going to give that a try. He's looking at the adrenal/electrolyte connection.
I have a follow-up scheduled in 2 weeks. I expect I'll have the labs back before that.
Personally I like this dr and he indicated several times that he likes to roll up his sleeves and get to the bottom of things. So...at this point I'm optimistic which is very unusual after a dr visit.
Wow, that sounds great. Is this a functional/naturopathic doc or a "traditional" doc. Finding a traditional doc that will spend 1+ hours with you and says that he likes to "roll up his sleeves and get to the bottom of things" is exceptional!
What part of the country are you in? Please keep us updated.
I'm in the Northwest. It's a naturopathic dr - I wouldn't even consider a "traditional" dr for this. This is the 3rd naturopath I've been to who has assured me that he has the ability/will to get to the bottom of what's going on. For whatever reason it seems the assumption is that something simple has been overlooked and they will find it. When that proves not to be the case, "I don't know" follows shortly. This guy's knowledge seems to be a bit broader and deeper so I'm somewhat optimistic. For example he wanted to check zinc levels - I find that interesting. I've wondered about zinc/copper on and off throughout all of this nonsense. With a previous dr I requested a test of zinc & copper. Zinc was right at the very low end of the range but the dr was so totally and completely dismissive of it that I didn't pursue it. It was also serum zinc which is apparently less accurate than the RBC zinc. I did try supplementing zinc in the past and it seemed to make things worse - but then again maybe it was another variable I wasn't controlling for.
4 days ago I started ConcenTrace - it's primarily magnesium with a bunch of other trace minerals. My thought was to try a different form of magnesium (in addition to the glycinate) plus the idea of additional trace minerals is interesting. Last couple of nights have been really good - nothing else has changed (at least not what I'm paying attention to) so I'm going to stick with it and see what happens.
Thanks for the update Mike. Well, the Northwest is definitely the area to be in for complementary medicine. Washington and California seem to embrace alternative practitioners a lot more than the Northeast (where I live) where naturopaths are very limited in what they can do.
I continue to believe this is some sort of vagus nerve issue that may or may not be caused by some digestive issues. Last night--although I ate very healthy--I ate too much and had a pretty bad night. As is often the case, the vibrations seemed to be accompanied by some stomach discomfort/rumbling and maybe some reflux. Of course, vagus nerve dysfunction could cause digestive issues. So even if I'm close to right about all this, it's still difficult to figure out what the root cause is.
When you say your night was "really good", does that mean no vibrations? few vibrations? you were able to sleep through the night?
Yeah...the Northeast is tough for naturopaths or similar. As is a lot of the country for that matter. I think a lot of it is state licensing issues which to me is crazy. Even outside of health issues I think there's huge benefit to the naturopathic approach to things - making sure the "basics" are in place - good nutrition, good gut health, etc. If those things are lacking then there will be problems at some point down the road.
Have you considered that a food or foods may be the trigger? At various points in time I've felt that I was able to connect certain foods to an increase in tremor intensity. Beef is one that comes to mind. In fact now that things have gotten better I'm going to be trying beef again to see what happens.
"Really good" - for the last few months my tremors have diminished significantly in intensity, frequency and duration. When things were bad I'd have strong tremors that would happen throughout the night and also if I took a nap. With a few exceptions for the last couple of months or so I've had them only in the morning and intensity and duration has been decreasing. For the last few days they have been pretty close to non-existent. Because I'm trying various things I'm paying close attention (as close as I can when I am sleeping) to the tremors and trying to make connections. And the last few days - if I wasn't expecting tremors in the morning I wouldn't have noticed. This morning there may have been the slightest vibration but that was it.
Yes, I've considered that certain foods might be the trigger. Especially since I think this might be GI-related. I eat a pretty healthy diet (no sugar, no simple carbs, etc). All of the meats I eat are either from Whole Foods or from a meat CSA I belong to. So all organic/grass fed. I've cut out the usual "reflux foods" like onions and tomatoes. Maybe I'll try going vegetarian for a while to see what happens.
My current symptoms are what you experienced when things were bad. At the end of the day, the only red flag that I can see is a severely abnormal GI Effects test. Maybe the key here is that you've been working longer on repairing your gut than I have?
I haven't gone too far down this path. However, some thoughts:
My problems started after a really bad reaction to Cipro. Cipro is in a class of antibiotics (fluoroquinolones) that are known to cause mitochondrial damage. Both a naturopath that I had seen a while back and the functional doc I'm seeing believe that I have some level of mitochondrial dysfunction. I'm taking a couple of supplements for that although I'm not sure they've helped all that much. They may have helped with my fatigue, but not the sleep vibrations.
I've been thinking for a while that the vibrations are some sort of myoclonus and I know that myoclonus and dystonia are related (not quite sure how though). Why do I think this is a form of myoclonus? Because I've also been suffering from myoclonic jerks during sleep and at sleep onset. I had this pretty bad a couple of years ago when all of this started. My body would jerk just as I drifted off to sleep and wake me back up. I attributed this at the time to clonazepam withdrawal (and that still may be the case). This went away after a while. Lately, I'm pretty sure that I've started having some myoclonus of the neck or tongue or throat or soft palate or diaphragm (a hiccup is myoclonus of the diaphragm) or all of the above. This also happens just as I drift off to sleep and *may* be happening during sleep. This (as opposed to the vibrations) might be what wakes me up. It would also explain why this sometimes feels like I haven't been breathing correctly when I wake up. And it might explain why the vibrations feel like they're coming from my diaphragm or in your case, from your neck or head. I couldn't put my finger on this until recently when I actually was in light enough sleep to experience it. There were a couple of times when my mouth actually closed suddenly and involuntarily. This only happens when I'm about to drift off to sleep.
I did some Googling and found out about something called "palatal myoclonus" I'll let you Google it for yourself. This seems much more severe and constant than what I have, but seemingly related. Could be due to many things. They list MS, infections, neurological damage as possibilities. I've also found a few references correlating palatal myoclonus with Lyme.
Anyway, that's just the dystonia angle. I'm not sure about the mitochondria angle. From the little I understand about mitochondrial dysfunction, it could cause a host of symptoms.
What does this doctor think about the gut dysbiosis angle? This is something you and I seem to have in common in that we both may have/had possibly pathogenic bacteria in our gut. This can interfere with the production of neurotransmitters (including GABA) and, I believe, can also cause mitochondrial dysfunction.
He told me he's a "gut guy" when we 1st stated talking and asked some questions about the GI stuff. Since my GI is good at this point we didn't really spend any time on that.
I did some research on dystonia and found some stuff on paroxysmal nocturnal dystonia - that's the closest match from what I can tell. There's not a ton of info on it and based on what I read I have more questions than anything else.
A few years ago when things were at their worst I took a video of myself sleeping and although I felt like I was shaking all over the place when I woke up none of that showed up in the video. I was sleeping peacefully then woke up and although I had intense tremors it wasn't something that was visible on video. I was looking for sleep apnea or anything weird in my sleep that would cause the tremors. Nothing - just peaceful looking sleep.
From what I can tell dystonia is a different type of movement - something that would be visible. Same with nocturnal epilepsy - although there are other reasons why I don't think that is a good fit.
Mitochondria - I haven't had a chance to look into this too much but from what I've seen so far this looks to be an involved topic. This is a completely new area of investigation for me. A GI connection would be very interesting.
All of the above being said, I'm still somewhat stuck on electrolytes. I know it seems like I'm beating a dead horse (and then some) but as I look back in time it seems to fit. And that's the one thing I've really focused on for the last 4 months or so and my tremors are minimal at this point - just a bit in the morning. I cook almost everything from scratch so I need to make a conscious effort to get enough sodium. And several times over the last couple of months my tremors have gotten a bit worse and I realize I was not getting much sodium for the few days prior. I'm almost 100% certain it's not a sodium issue but I suspect its throwing other things out of whack. When I focus on getting more sodium things go back to my "new normal" - minimal tremors in the morning.
Actually just started. As I read through the list of ingredients, they are not the most absorbable form of things but can't hurt to try.
I also ponder why the morning seem to be worse - what changes towards morning? Cortisol for sure. If I remember correctly from getting labs done testosterone and zinc are time sensitive - higher in the morning (I believe - going off memory). For zinc for sure if the serum level is higher in the morning then it has to come from somewhere since zinc cannot be made in the body - so I have to assume there's some movement from intercelluar to serum in the morning.
I imagine there's a fairly long list of things that change like that. For the purpose of this line of thinking it makes sense to me that something is more in balance than it used to be when I got tremors throughout the night. So as things get more "normalized" I'm only getting the tremors during the morning when "things" (whatever that may be) are adjusting within the body to start a new day.
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.
Not much new here. The electrolyte mix (Electro-Mix by Alacer) that I've been using seems to help but I really don't understand why - it doesn't have the most absorbable forms of things but it does seem to be effective. I've noticed this several times over the last few years and in looking back to that six month or so period when I had no tremors - I was doing a lot of biking and was using this daily. In part it's why I've been so focused on electrolytes. That being said, I've tried supplementing each of the items individually with the more absorbable forms and that hasn't been the answer so I'm a bit stumped. Unfortunately this has become hard to find lately - I have a bad feeling that the manufacturer has discontinued it. I'm now heading down the path of trying the specific forms used to see if I can duplicate the results.
Unfortunately, I'm not doing too well lately. I continue to wake up feeing like I stopped breathing. The vibrations are about the same. My tinnitus is also about the same although I've also noticed that in addition to the slight "whooshing" sound, I sometimes hear a light clicking sound. Some Googling reveals that this could be some sort of myoclonus of the middle ear or eustachian tube dysfunction. The myoclonus thing correlates with my feeling the my sleep disturbance is some sort of myoclonus of the diaphragm or throat or soft palate. This is why I think the vibrations we're all experience are not due to the same root cause. I found some references to something called "palatal myoclonus." One mother of a child suffering from that started a blog about it. Her child has had multiple issues including palatal myoclonus and after years of various treatments has made the connection to Lyme.
I've made an appointment at another sleep service in the neurology department of Brigham and Women's Hospital in Boston. One of the top hospital's in the area. Given Toby's experiences at Mayo I'm not expecting much, but I thought I'd at least try out my myoclonus theory on them. Unfortunately, even if I'm right the only treatment for this sort of thing is benzodiazepines or other anti-convulsant drugs, none of which I really want to take.
And of course, this could still be Lyme Disease which a couple of alternative practitioners think I have. My joint and muscle pain kicked up for a couple of weeks and then subsided again which might reinforce the Lyme diagnosis. I'm not going to mention that at my appointment at The Brigham though...
Anyway, I'm still hanging in there (what choice do I have?) and am glad to hear that you're doing well Mike and that Toby has found some relief with clonazepam. I'm also going to look into the electrolyte thing as it's something I haven't tried yet. You're right that the electrolyte mix you're using may have gone off the market. There appear to be a number of similar products and I plan to see whether Whole Foods or my local health food store sells something similar.
I saw my dr yesterday for a physical (all looks good) and asked him about the ElectroMix. He felt it was a pretty decent (if not better) all the way around. When I told him that it appeared to be discontinued he mentioned TriSalt. It's magnesium carbonate, potassium bicarbnate and calcium carbonate. I looked at it on Amazon and read the reviews and a number are mentioning alkalizing. That to me is interesting if only because it puts a totally different spin on electrolytes and why the electrolyte mix seems to work better than other forms of the same minerals.
I remember at one point in time I came across something that got me thinking about acid balance but I don't remember what. I don't think I went very far down that path. I have no idea if there is anything to this but when I read the TriSales reviews (alkalizing) and then look at the ElectroMix ingredients it makes me curious. Almost everything in the ElectroMix is an antacid/alkalizer.
I received my order of magnesium carbonate yesterday - I'll give it a try and post feedback in a few days.
One other thing the dr mentioned yesterday was a sleep study with EEG to rule out any type of seizure disorder. I don't know if EEG is typical for a sleep study or if this would be a specialized version. Conceptually I think that idea makes a lot of sense but I'm personally not going to go down that route at this point but I wanted to pass it along.
It makes logical sense that a sleep study would be a fantastic diagnostic tool for obvious reasons however all of the posts that I've seen talking about sleep studies seem to indicate otherwise.
You mentioned a clicking sound in your ear - that's interesting because when I lay down to go to sleep I will tend to hear something similar. And I can correlate that clicking to tremors - if I hear more clicking then I'll have more significant tremors that night and vice versa. Some nights - like last night - it was quiet...and last night was a peaceful night.
To me it sounds like a muscle spasm of some sort related to the workings in the ear somewhere. So again...I look to electrolytes ;-) I'm 100% certain of the inner ear "clicking" and tremor relationship.
One other interesting relationship that I think exists (but am not 100% sure) is shaking during exercise & tremors. For example - holding a plank until failure. On some days I'll be shaking all over the place almost from the start while others I'll hardly shake at all. And on days when I'm shakier on plank I believe the night before I had more tremors.
Things are pretty good on my end at this point. I don't think I've had any tremors for the last week or so - maybe a bit longer. The closest I've come is waking up feeling some tightness in my neck from the muscles not being entirely relaxed - but no tremors as far as I can tell. So not perfect but a significant improvement.
There's something with the electrolyte mix that I respond to. Still not sure why. As far as I can tell it's not the magnesium carbonate. I'm now trying magnesium malate because of the malic acid in the mix. I'll back off the electrolyte mix in the next couple of days and see what happens.
If it's not the malic acid then I'm drawing a blank as to why it helps which is concerning since I don't have too much left and it's not available anywhere as far as I can tell.
Not sure if I mentioned it before but in the last few weeks I've added maganese and zinc. Maganese because it's one of the ingredients and zinc because it's something that logically makes sense and I tested on the low side in the past. I don't think either of those made any difference and I've started to slack off on taking them but I did want to mention it in case anyone can make a connection to either.
I haven't changed anything else so as far as I can tell the answer is in that electrolyte packet. Doesn't seem like it should be that hard to figure it out from here.
That's great news Mike. So just to be clear, are you now sleeping through the night? Also, has your urinary frequency died down too? I was thinking that frequent urination could be one cause of losing electrolytes.
Yes, sleeping through the night and if I have the opportunity to sleep in I can without any problems. Only times I wake up are to pee...and the frequency is possibly a bit better. Tough to say since I really don't pay attention to it too closely. More than I should would be my best answer. Talked with a couple of drs about it and they ran some tests (blood & urine) and all looks fine. I've found in my own research where imbalances and/or deficiencies can cause frequent urination. Off the top of my head I believe I've seen it for sodium, calcium & magnesium - not sure about potassium.
plus a list of minerals in trace amounts. They have a very informative website at dubdubdub dot traceminerals ******* if you want to know more specifics. I'm going to start mixing this into my water today and we'll see what happens.
My status hasn't been great over the past few days. Still having lots of myoclonic jerks while drifting off to sleep and the vibrations have stayed about the same and my anxiety level is pretty high.
It occurred to me that things seemed to get a bit worse after I had my mercury fillings replaced recently. Maybe my body felt that that was traumatic or maybe I ingested more mercury despite all the precautions the dentist took. Who knows. It's so easy to pull causal relationships out of thin air when you're desperate.
So for now, I'm taking 1 OTC doxylamine periodically to help me get to sleep. This seems to make me drowsy enough to get passed the initial jerks and vibrations so that I can get about 5 hours of sleep before my first wake up with vibrations. It's not optimal, but that amount of sleep at least reduces my anxiety levels and helps me be more functional during the day.
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