Have either of you received any physical therapy? I would think they would have offered that for toby along with the cortisone shot. Are either of you doing any thyroid medication, yet? It takes being on it for 4-6 weeks before you can tell if it might be helping.
I did 3 coffee enemas over a 6 month period to try and detox. I am drinking alkaline water, ph 8, and I am sprinkling Turmeric on my food as an anti-inflammatory. What blood type are the two of you? I am A- and am trying to follow "Eat Right For Your Type". Can't do the soy, however. I believe soy has a pretty negative effect on thyroid.
You both sound exhausted. Please check out the physical therapy as soon as you can and you may need to insist on a low dose of thyroid meds just to see if it might help.
I am still hoping what you both have is the same as what I had and with the right treatments you will be able to get some relief. I am praying for both of you. Once I started my thyroid meds, I did not seem to have any more silent acid reflux. Interestingly, I had to give up my greek yogert, or I would be hoarse by bedtime.
Thank you for your support ieagen and for staying with us even though your symptoms have resolved.
Yes, I'm pretty exhausted. Although in some respects, the fatigue part of this has improved a bit. I can now work a full day without losing it by 3:30. So that's progress. Like I've said, I don't think the vibrations are the root of the problem. Just one of the symptoms. And I think there are a number of conditions that can cause the vibrations. So to be honest, I'm less concerned with the vibrations than the fact that my sleep is poor. Without sleep, it's difficult to get healthy. So are the vibrations causing my sleep issues or is the same thing that's causing my sleep issues causing the vibrations, fatigue, GI problems, etc?
For the last few weeks, my GI problems have sort of trumped everything else: stomach pain, bloating, reflux. However, today those problems seem to be much better. That's been the pattern with me. My symptoms seem to cycle without any apparent pattern.
One common thing that I see with the 3 of us is some sort of hormonal imbalance. With ieagen, it's thyroid. With toby and me, it's testosterone. It's hard for me to remember exactly, but I *think* that I didn't have the vibrations while I was on testosterone replacement therapy. Not surprisingly, I felt much better in general during the time I was on TRT. So (and I think I've said this before) maybe trying TRT again would be worthwhile. But I still don't want to do this until I've gone a bit further with the treatment prescribed by the functional medicine doc. Toby, what's your status with doing TRT? Did you decide to try a cream rather than do injections?
To answer ieagen's questions:
Yes, I did some PT and it helped my neck and head pains quite a bit. But it didn't do anything for the vibrations. My blood type is O+. I'm aware of the blood type diet theories, but I haven't looked into it much. Right now, I'm on a fairly strict diet since I seem to be severely insulin resistant. I'm also trying a low-histamine diet (see below). My thyroid numbers (including TSH, free T3, T4, and reverse T3) are very good even by alternative medicine standards which typically uses much narrower ranges for normal.
And now my latest theory. Many of my symptoms are consistent with histamine intolerance or what they are now calling Mast Cell Activation Disease (MCAD). This can be due to your body not processing histamine correctly or producing too much histamine. It would account for my chronically stuffy nose and recent food sensitivities/GI problems. I realize that it seems like I'm just chasing one far-fetched diagnosis after another, but this one actually makes a lot of sense. And MCAD can be triggered by some other event like and infection or Lyme. It's another one of those difficult-to-diagnose conditions that many doctors (even alternative doctors) are only now becoming aware of. I recently tried modifying my diet to a lower histamine diet. This meant giving up all fermented food including yogurt and kefir. I also started taking Quercetin (a natural mast cell stabilizer) and Histame (a supplement that contains DAO which is an enzyme involved in the conversion of histamine). It might be a coincidence, but my GI problems are much better now. Even my stuffy nose seems to be a bit better. But once again, this didn't touch my sleep problems.
Anyway, just writing all of this has tired me out a bit.
Thanks again ieagen for your thoughts and continued good luck to everyone.
I had done some physical therapy in the past. The spine doctor basically said physical therapy wouldn't help my condition. I haven't tried testosterone yet because I am on blood thinners from a previous blood clot.I have appointment in a few weeks that I may ask about testosterone cream. It seems when I eat low-carb I have less issues. My vibrations have gotten more intense and start a lot earlier in the night. I have learned to live with this issue. I can get some decent sleep most nights.
I’ve been following this thread for a couple of years now dealing with basically the exact same thing that others have described here. I still don’t have a good understanding of what the root cause is but I believe I’ve uncovered a few different triggers that wanted to share with the group. It seems that if I avoid these triggers then I can almost eliminate the tremors.
Multivitamins is probably the single biggest one for me. I’ve tried many different multivitamins and react badly to all of them. I had a GI problem a few years ago and had some absorption problems so I was taking various vitamins/minerals – it took quite a while to make the connection between the multi and sleep tremors. I’ve taken various single vitamin/mineral supplements and some are fine while others seem to cause problems. B complex, B1 and CoQ10 seem to be problems and zinc is suspect. Calcium, magnesium, copper, B6 and B12 all appear to be fine. I don’t have enough info on any other to say either way.
I was tested for MTHFR and am heterogeneous for the 677 mutation. I have been taking methylfolate, methyl B12 and P-5-P (active form of B6). This seemed to have helped.
I also suspect a few different food triggers with beef being at the top of the list. Quite a few other foods fall into the suspect category including cheese/dairy.
It’s tough to determine specific cause and effect but I believe the above info to be correct enough that I wanted to share it in the hopes that it may help someone else.
With all of that said, I believe there’s a still unidentified underlying issue that is causing the problems. Vitamin B1, CoQ10, zinc, etc should not cause any negative reactions but they seem to. So my next step is to try to dig into this aspect of things more.
Thanks for your input. I don't have the same reaction to vitamin supplements. It is so hard to tie anything to this frustrating problem because it is so cyclic. Every time I think it's a trigger, a bad week occurred changing my mind. The only trigger that is confirmed for me is sugar.
When behavior is good and eating lower sugar, it decreases tremmors.
I am also heterozygous for the MTHFR 677 SNP and am taking supplements with methylated forms of B vitamins and CoQ10 plus some other supplements. I think I'm going to do an experiment and go off of my supplements for a while to see if anything improves. Then I'll add them back slowly one by one to see if anything changes. I also agree that eating poorly can affect this. I've been trying to eat pretty clean and when I don't I think the vibrations get worse. Difficult to say, but I wouldn't be a bit surprised that sugar exacerbates this condition. Sugar in general is bad...
I doubt that the MTHFR mutation itself is the culprit as apparently a significant minority of people have at least one of the MTHFR mutations. Although reduced methylation could account for some sort of additional toxic load/inflammatory condition that results in some neurological problems one of which is the sleep vibrations
I got an expensive organic latex mattress a few years back. Not sure if that's what you mean by a foam mattress. And if I remember correctly, we got it because I was already having sleep problems. But I'm not sure how closely getting the mattress correlates with the vibrations starting.
I'm still about the same as well.
One question I don't remember asking. Can you nap at all? Does the same thing happen to you when you try to nap as when you go to sleep at night? It does for me.
For me it is impossible to take a nap. The internal tremors starts as soon as I start to relax.
Funny enough I can sleep for 3-4 hours every night before I wake up with the tremors but in the day time is
is impossible to doze for a few minutes. I have found out that the tremors are mainly situated in my left side
in the back and front of the chest and in both arms.
My tremor severity seems to cycle, but overall they keep progressing. I have no more anxiety over them. It is hard to get them to stop at this point. I have exhausted every resource. Any new ideas or approach from anyone?
Sugar and alcohol are definitely triggers. Because of the cyclical behavior its real easy to relate things inadvertently with symptoms.
Could it be an idea to try to recapitulate.
What sex we are?
How old we are?
When did the tremors start?
Have we any history of hypothyreose?
It started 4 years ago
4 years of known hypothyreose
Tremmors in back arms and sometimes face after sleep little while
5' 9" 245lbs
Had a lot of stress
Traveled to Mexico
Bought a hot tub
Just checking in to see how everyone is doing. Wanted to let you know the end of May I had what I thought was a Ganglion cyst removed from my lower leg only to find out it was a Schwannoma instead. This is a benign tumor that grows on nerve fibers and can occur anywhere in the body. There is some suspicion it might come from being exposed to too much radiation. I don't think this had anything to do with my vibrations, but found it interesting since it affects the nerves.
I have added Iodoral, an iodine supplement, to my hypothyroid medication and am sleeping all night. However, I am only taking 3 mg daily rather than the recommended 12 mg (Dr. David Brownstein). It seems to have slowed down my hair loss as well. My vibrations are gone. If I do get one, it is very mild and hardly noticeable at all.
I am female and 66 yrs. old, diagnosed as hypothyroid last year. My vibrations started 7 Sep 2011 and ended earlier this year after physical therapy on the bulging disc in my neck. I had to switch to a very flat pillow to keep my neck in alignment while sleeping.
I don't know if any of this will be helpful to you, but I am certainly hoping you can find some relief. The sooner the better.
Thanks so much for sticking with us even after you're feeling better ieagen. I had done some physical therapy on my neck during the time I was having significant neck pains. That fixed the neck pains, but not the vibrations. I'm still wrestling with whether or not I want to see a chiropractor. Aside from taking some nasty drugs (which I refuse to do), I think it's the only thing I haven't tried so far. I've heard that many people have successful outcomes, but I've also heard some horror stories. Of course, that's probably true with "traditional" medicine as well.
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.
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