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.
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.
Any luck with the ConcenTrace? I tried it for a while and don't really have much of an opinion either way. It may have made a bit of a difference but it had a fairly significant laxative effect for me so just kind of got away from it.
All pretty much the same here - good...but I'm still trying to figure out exactly why.
That's interesting (and good) that the ConcenTrace seemed to help.
I've been taking magnesium malate for the last couple of weeks or so and I think it's been a good thing. I'm continuing with the electrolyte mix but at lower amounts (1 packet/day or so vs 2-3) and all continues to be good. Also, my palpitations have completely resolved - didn't even realize this until I was talking to a friend yesterday and it came up. Then I realized - wow - no palpitations for a while now. Not sure if it's the magnesium malate or the electrolyte mix or both.
I have 2 different thoughts with why the electrolyte mix helps - I'm absorbing that form of magnesium better so ultimately it's a magnesium issue. My other thought is that in the mix the forms of the electrolytes are carbonate - so alkalizing. So getting into the acid/alkaline discussion.
In the past I've had a good reaction to a liquid magnesium citrate and Ive also had bad reactions to beef and other acid forming foods (I see this now in hindsight). So I can make a good case for either.
Based on all of the research magnesium glycinate should be as well - if not better absorbed - than most other forms but I tried that in large doses for long periods of time without significant results....which argues against the magnesium itself being the problem. Or maybe it's an absorption thing with mag glycinate somehow?
The Electro Mix has come available lately on some sites - seems to be available for a handful of hours then sells out. I picked up a few more boxes off of Amazon yesterday. You may want to keep an eye out - it would be very interesting to try if you could get some. I talked to the manufacturer a few weeks ago and it hasn't been discontinued but that's all the info they had. So I pick some up when it comes available.
Also, magnesium malate & alkalizing. I'd say they are both worth looking into. I still don't know exactly what the answer is but I believe it's in the above info somewhere.
I am continuing to try to narrow this down and will keep updating with any relevant thoughts.
Hang in there with the GI stuff - it will probably take a while (based on my experience) but you'll get it figured out. Candizyme is a digestive enzyme that I tried several times with pretty decent results - may be worth looking into that or similar. I tried other "standard" digestive enzymes a number of times without much in the way of results.
You may also want to get a book titled Digestive Wellness by by Elizabeth Lipski. Hands down the best GI book I read - I have the older edition. Got the new one for a friend and I didn't think it was as good. I don't have mine handy right now but I believe it's the 2nd edition. Blue/grey cover.
Thanks Mike. Got my GI results. I guess it shows some improvement, but it's still not great. My ratio of good to bad bacteria is still way off. However, all of the "other bacteria" listed as "possible pathogens" are now gone. Summary is:
- secretory IgA is now within normal range (it had been elevated)
- no bacteria listed as "possible pathogens"
- Bacterial diversity is still way off.
- Triglycerides went way high. This is surprising since I don't eat any refined sugar anymore. On the other hand, I haven't been getting much exercise.
- E. Coli is very high (above the labs upper limit) which is concerning. I'm not sure why E. Coli at this level is not considered a possible pathogen. So maybe I picked up E. Coli form somewhere and that's causing some of my problems especially since I have a somewhat comprise immune system.
Again, I'm not sure that my GI problems are the cause of my vibration/sleep problems. However, for me, there is definitely some GI upset that occurs at night when I have the vibrations. It could just be a "comorbid condition" as the docs like to say. I'll look into Candizyme and also see if I can pick up some ElectroMix.
Thanks for the advice and for continuing with this "experiment."
Met with the functional doc. Going to bring out the big probiotic guns now to try to address gut dysbiosis issues. Starting on VSL #3 and a prebiotic today. Also going to switch to a different Lyme protocol in case this really is (or part of it is) Lyme.
Just wanted to wish a Happy New Year to everyone participating in this thread. I hope the new year brings answers and well-being to everyone. Toby, I hope you're doing better and Mike, I hope you're continuing to do well.
Someone mentioned that their night tremors got worse recently after replacing Mercury amalgams?? I believe that the night tremors might be caused by mercury toxicity.
About a week ago, I started taking high doses of Alpha Lipoic Acid as an antioxidant, but unbeknownst to me it is also a chelator for heavy metals. Due to its short half-life and BBB permeability, it actually re distributes mercury to your brain. I've had really bad night tremors the past 3 nights and barely got any sleep.
Mind if I asked what sort of temporary treatment you used to stay asleep? I don't know if I can keep this up much longer, running on 2 hrs of sleep per night.
I've been using a half-dose (12.5 mg) of Doxylamine occasionally to eke out a couple more hours of sleep. A full dose works better, but I feel destroyed for most of the following day. Taking a half dose seems to give me a reasonable trade-off between additional sleep and being functional the next day.
I have left three lengthy messages full of detail but none would post. Seems to be working today.
I have been talking Clonazepam for the last couple months and having excellent luck. I started incremental doses .5 mg at a time. I take 3 mg before bed. Almost no side effects. Little drowsy in the morning but I sleep almost all night. It has reduced tremors to a slight feeling that I can easily go back to sleep. I have not rested this good in a very long time.
I suggest that everyone try this until we figure out the real reason for the issue.
I have been tested for every heavy metal and low in all.
Using my Fitbit things I noticed on this drug my resting heart rate went from 59 to upper 60s. Weird I know as my wake ups went from 18-25 times a night to 2-3. I take pill at 7 pm and out hard till morn. It also as said before, lightened the intensity. I have been on this long enough to validate it.
Latest variable just to confuse things further. I had my house inspected for mold. My finished basement as well as the A/C part of my HVAC system definitely tested positive for mold. My basement is finished (looks better than the rest of the house) and includes wall to wall carpet which is apparently a big no-no in basements. On much of the wood baseboards, the inspector pointed out that what I thought was dust was actually mold. There was also some mold on some furniture in the basement. None of the mold turned out to be the very deadly black mold (Stachybotris)--mostly Aspergillus (I'm allergic to Aspergillus) and Penicillium, but it can still be a problem if you're allergic to it. So we're going to have a mold remediator in to pull the carpeting and clean up the mold in the basement. We also might install a professional-grade dehumidifier in the basement which the inspector says is a must.
Does mold have anything to do with my vibrations or other health problems? Somehow I doubt it. Regardless, any level mold is a good thing to deal with. Treating mold toxicity is yet another area that seems to be at the "fringes" of medicine today.
At this point, my vibrations and GI problems are still pretty bad. I had an abdominal CT scan a few days ago that didn't turn up anything GI-related other than mild constipation. (Still deciding whether I want to go back to the gastro to talk about a colonoscopy or repeat endoscopy.) Although it did turn up some degenerative joint disease in my lumbar region. Not surprising since I'm 55 and my mother has rheumatoid and osteo arthritis. Getting the 2 pints of barium milkshake out of my system also did a number on my GI tract which I may still be recovering from.
Sorry to hear about the continuing GI stuff - that seems to be a remarkably difficult thing to get straightened out when it goes awry.
Things are pretty much the same on my end - either no or minimal tremors. Unfortunately I'm no closer to figuring out the root cause - I continue to do everything I mentioned before and it continues to basically work.
Have you ever looked into acid alkaline balance? I don't really have an opinion either way on the subject...however after dealing with all of this nonsense for so long I've learned to keep an open mind. I haven't made any specific efforts in that direction however I can make some connections (if I'm connecting the right dots) that could lend some credibility to a connection with tremors. At this point I'm enjoying eating "normally" again so I'm in no hurry to change things up but I thought I'd pass it along. A more alkaline diet would be the direction I would go in next if the tremors returned at a significant level
I can say with 100% certainty that my tremors are location independent. I did a fair bit of travel for a while and regardless of where I was the tremors were consistent. So to me that ruled out anything environmental with virtually 100% certainty.
I haven't specifically tried a more alkaline diet, but it's worth a try. I think the ACV you used for a while is supposed to help alkalize things so that might be a good start for something to try. I tried to add turmeric spice to things when I can. Although I've been shying off of spices of late because I think they might be upsetting my stomach. Hard to tell. I was also considering supplementing with curcumin which I've read good things about in terms of dealing with inflammation.
My tremors also continue regardless of location. But that doesn't mean that it's not something environmental. For example, if mold exposure results in symptoms more severe than a mild allergic reaction, the symptoms typically don't resolve for some time even if you move away from the source of the mold. Again, my intuition tells me that my problem is not due to mold.
Like you, I think I may be having a problem digesting meat (or maybe all proteins). 2 nights ago, all I had for dinner was some stir-fried bok choy. That night, I still had some vibrations, but not much in the way of GI problems and my sleep was a bit better. Last night, I had a home-made cabbage soup with chorizo and a piece of leftover pork loin. I had a pretty bad night with lots of vibrations and GI discomfort. So was it the meat? The chorizo being too spicy? It's always difficult to tell because my symptoms seem to be so variable. Anyway, I'm now keeping a very detailed food/supplement log so maybe I'll finally be able to find some pattern.
At this point, I think I have no choice but to see the gastroenterologist again. Even though my CT scan didn't turn up anything, it doesn't mean that I *don't* have gastritis or colitis or something else that might be uncovered by a colonoscopy or endoscopy or some other annoyingly invasive gastro procedure. I figure I should at least rule out some of the more obvious mainstream things.
Have any of you had problems with low body temperature?
I have for some weeks measured my temperature and at no time does it exceed
a temperature of 96.4 F.
My tremors at night is also very similar to cold chills - but I am not cold or freezing.
I have hypothyroidism but since I am in treatment my temperature should not be so low.
Another strange thing - I shake incidentally also when I yawn.
What a life :-)
Best regards to all
My temp tends to run on the low side. Typically in the mid-97s. Every now and then it gets back up to the 98s. I don't check it that frequently though. My thyroid numbers are all fine, so I don't think hypothyroidism is my problem. Have you had your thyroid hormones checked recently? Even if you're undergoing treatment, thyroid medication frequently has to be adjusted over time.
Are they only checking TSH? Many practitioners today believe that you need to have a full set of thyroid hormones checked including free T3 and free T4. Just checking TSH is not sufficient. Regardless, with a TSH of 0.8, the chances are pretty slim that you're hypothyroid.
I wanted to check-in and see how everyone is doing.
I've had some ups and downs since my last post. I got a bit lazy about was working for me - focusing on potassium in particular. Last night was a fairly rough night and the only thing I did differently yesterday was spend some time in a steam room. Same thing earlier in the week as well. I think I mentioned this before - I can correlate with almost 100% certainty activities that cause a lot of sweating with an increase in tremors. This has been a consistent, repeating pattern.
To me the only thing that makes any kind of sense is electrolytes. But I can't figure out why. Prior to all of this I never had any problems at all with intense activities, etc. Now it seems like my electrolyte balance is quite fragile and easily upset. I'm at a loss to explain it any other way.
This is pretty much the point I've gotten to before - feeling that it's electrolytes but having no idea where to go from here.
Hi. I'm afraid I don't have much to offer. My vibrations are still here and supplementing with electrolytes doesn't seem to have had any affect. I decided to try once more to see if a sleep neurologist could help. I've had one appointment and I'm not very optimistic. Some of my symptoms (especially the ear clicking) implied that I'm having some kind of muscle spasms. So the neuro wants me to try low doses of Flexeril which is a muscle relaxant. I've been on it for a few days and so far no improvement. Although I do believe I'm having some muscle spasms, I don't believe that these are the cause of the vibrations. In other news, I'm looking into mold toxicity as a possible cause. We just had our house tested and there was definitely some mold. Whether I'm actually suffering from mold toxicity is another question entirely. This seems to be another one of those fringe areas like Lyme and diagnosis is tricky. In happier news my GI problems have gotten better although I still have a ways to go.
As to your sweating/electrolytes hypotheses, I really don't know. I have found that overdoing it on exercise has exacerbated some of my symptoms on occasion. Although I can't say that it's adversely affected my vibrations specifically.
I'm not sure what I did. Some of my GI problems *might* have been due to trying a probiotic that was too strong for me. I tried VSL#3 which is about the strongest probiotic you can get. My GI system might be too sensitive for that right now. I stopped the VSL#3 a while back and things seemed to improve. Not perfect, but definitely improved. I haven't taken any probiotics (including fermented foods) for a while now. I'm going to go ahead with an endoscopy and/or colonoscopy just to rule some things out and for some peace of mind. I don't expect either to uncover anything.
Here's another question about some symptoms I've noticed:
- Getting burning sensation in my arms and chest occasionally when I wake up with vibrations. These sometimes (but rarely) continue into the day.
- My face (especially my nose) turns red really easily. This can happen when I exercise or when I'm in the sun even for a short while. Even taking a short drive on a sunny day can do this. It isn't a sunburn because it disappears pretty quickly.
I'm still thinking that these symptoms could mean some sort of histamine intolerance. This can happen when your gut is screwed up.
Guys, it has been a few months now on Clonazepam. I take 3.5 mg before bed. I sleep every night like a baby. Tremors seems to be slowly dissipating. I only feel it in my hands. The only side effect is a little groggy before and after bed. I recommend trying for a while until we find out what the actual answer is.
I am getting AC ready for summer. They were full of mold. I am going to sell my house and move anyway. I will seek what happens.
Good news Toby. Glad to hear the Clonazepam is working for you. You should definitely speak to your doctor about this, but you might want to consider taking periodic "drug vacations" from the Clonazpepam to see what happens. As you know, Clonazepam is is highly addictive.
Here's an alternative theory to your sweating theory. It wasn't the sweating that caused an increase in your symptoms, it was the heat. Saunas are used as detox therapy because they heat up your body making it less hospitable for things like undesirable bacteria. Maybe you haven't quite gotten rid of whatever baddies got into you from drinking that tea. The sauna caused a die-off reaction which exacerbated your symptoms. Even immediately drinking water and replacing electrolytes might not have been enough to avoid the detox reaction. Just a theory...
Well it's nice to find a thread with similar symptoms to mine, and also disappointing that so few have had good results. My tremors or spasms began 3 months ago. Happens about 10 min after lying down. Either to sleep or a nap. Keeps me up all night. Tremors center in my chest and back. Fingers tingle as well. Very similar to all others here I have gone through every test around. Cardio ok. Endo ok. Neurology ok. Gastro ok. Only thing they discovered was severe sleep apnea. Been going to mayo . On propranolol and Lunesta for sleep. That helps somewhat . Tried herbal supplements as well. I am surprised with all this time on this subject there are so few answers.
Had some wine and some of my wife's dessert with dinner last night and had one of the worst nights in a while. Vibrations, stomach pain, anxiety off the charts. Tinnitus is much louder today and I feel terrible. I guess alchohol is off-limits for good. You think I would've learned by now.
I have vibrations still, but they no longer bother me. Mostly in my hands. It does not feel that the medication is addictive. I have no urges to take the meds. Totally changed the vibration feeling to something desensitized.
It's not actually addictive, but you can build a dependency on it. Those are not the same things. For example, you probably won't develop drug-seeking behavior. Just know that you absolutely can't stop this med cold-turkey. If you want to stop it or reduce your dosage, you need to do it very gradually. Clonazepam is a respiratory depressant (as are most sedating meds) and if I were you, I'd ask for another sleep study at some point to see how you're doing. You could also just use your pulse-oximeter for now to see how your heart-rate and oxygen are doing during sleep.
Initial experience with Tegretol looks promising. I took 1 200mg pill last night before bed. I didn't sleep all that well, but aside from a couple of light vibrations when I first went to bed, I had no vibrations at all. Of course, this could be because I didn't get into deep sleep, but I did wake up from a dream a few times which is when I almost always have vibrations. And when I got up this morning I had no anxiety and didn't feel like I had been punched in the stomach, so that's all good.
I'm still not too thrilled to be taking this drug. It's primarily used for people with epilepsy and/or bipolar disorder. And it comes with lots of warnings. It's not a benzodiazepine, but it's still a GABA agonist so I'm concerned about developing a dependency on it. But like I said earlier, I felt like I needed to do something even if only temporarily to address my quality of life.
I've been taking between 4 and 6 of the 650mg capsules per meal depending on the size of the meal. In the past I had higher potency ones (1 gram) and could take 6-8 or those without discomfort. That's a huge amount of HCl so apparently that means I'm lacking to a significant degree?
So what I'm taking now is just what "seems right" without being "excessive".
That 6 month or so period with no tremors when all was good - I'm almost positive I was taking HCl then. I really wish I would have documented things better - I suspect it would have made this unpleasant journey quite a bit shorter.
To me it makes logical sense - the whole digestive process starts in the stomach with HCl - seems to follow that if the 1st step isn't working correctly that it will cause downstream problems - malabsorption, dysbiosis, etc.
The next step of course will be to figure out why I'm low in HCl but that's a project for down the road - for now I'm going to continue on as is and hope that all continues on this improved path.
One of the reason I'm fairly confident is that over the last 2 weeks I've done lots of things that should have caused rough nights but I slept peacefully. Some minor muscle tightness at worst.
From all of my research and conversations w/ drs, bringing up vitamin & mineral levels takes time - months in most cases.
Prior to starting the HCl most nights were basically fine - not peaceful but not bad either. So a long way from when things were bad. I believe that my focus on electrolytes for the past 6+ months has brought the levels up from where they were and minimized the tremors. And the HCl is now allowing me to absorb more efficiently so I'm continuing to chip away at whatever is deficient/out of balance.
If indeed HCl is the answer then hopefully you'll see improvements as your vitamin/mineral levels balance out. Great news about the GI improvements - I suspect that's a huge 1st step in the right direction!
I try to get protein with every meal however for example today for breakfast I had oatmeal. Relatively low protein but I still took 4 HCl. I did 4 because it was a smaller portion size than lunch or dinner where I may take 5 or 6. Not a particularly precise approach but it seems to be working well enough.
The way it was explained to me way back when by the dr was that I should take increasing amounts of HCl with a typical meal until I felt some stomach discomfort then back off by 1. That would then be my "standard" amount of HCl for a typical meal. I've always viewed it as a relationship between HCl and portion size not HCl and protein content. To me that's an accurate reflection of what I assume the natural process is.
Right now I'm using Solaray but I don't think brand matters much in this case. I also used Thorne (1 gram) in the past. I'll probably go back to Thorne going forward just because I can get the same amount of HCl with less capsules.
Great info as always Mike. Maybe I'll give the copper a try and see what happens.
One thing that continues to be different in my case is that I'm still clearly having some GI issues. Pretty much without fail, when I'm woken up during the night I feel like I'm having some kind of heartburn. I had a pretty bad bout of this a few days ago and I thought maybe I was overdoing it on the HCL supplements, but it also could have been something I ate. I had a sort of big lunch that day that contained breaded pork which may have disagreed with me for some reason. I remember a few years ago the first time I had a massive GI problem was just after I ate some store-bought fried chicken (which I love). I was in pain for days after that... So maybe it's a gluten thing although I've fairly careful (except for that one lunch recently) about staying away from gluten.
Thanks once again for sticking with this Mike even after you're feeling better.
I've continued with the Tegretol for want of a better solution and until I see the Neuro to discuss other possibilities. It definitely suppresses the vibrations but, as I think I've said before, I suspect that any GABA agonist (benzos, Z drugs, etc.) would do that. One of the side effects was pretty significant fatigue, but that may have been amplified by the fact that I was also taking some Chinese herbs for sleep. I've stopped that and I feel a bit better so we'll see how that goes.
Not having the vibrations has made it pretty clear that the vibrations themselves were not the direct cause of my sleep problems. I definitely have some GI issues (most notably reflux) which I think are the main cause. Whether I'm just having garden variety reflux or whether I'm having some sort of muscle spasms that involve my throat, stomach, and/or diaphragm I can't say at this point. I know that I'm having some kind of muscle spasms because that's what the ear-clicking is. Are the spasms just amplified during sleep?
Could Mike also have been having (silent) reflux which is why taking HCL resolved his vibrations? Is this why Toby's vibrations are worse when he doesn't eat well?
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