It's been a while since I checked in but things are basically the same. Minimal to no vibrations on most nights. However what I've been doing has changed. A few months ago I tried a green juice drink that was basically juiced kale and spinach. At the time I was having moderate vibrations. That night I slept peacefully for the most part. Since then I've confirmed that for whatever reason a large amount of leafy greens is very helpful in minimizing or eliminating the vibrations. I'm not sure why this is but if I'm diligent about getting lots of leafy greens things are good. If I start slacking a bit the vibrations will return.
I mentioned the vibrations to a friend of mine a while ago and she said that she had the same thing in the past and that a higher fat diet resolved her issue. She also mentioned bone both. I haven't had much luck with a higher fat diet but I did try bone broth several times. In general it seems to help with the vibrations but it also increases my tinnitus. Maybe a histamine reaction? Because of that I don't think that bone broth is a great solution for me but it may be worth a try for others. Fat and carnitine tie together so in theory I can see a connection there.
One other update - in the past I was almost certain that calcium was causing me problems. It turns out that it's not the calcium but rather the vitamin D that I react badly to. I haven't the foggiest idea why but I react badly to supplemented vitamin D. I tried calcium citrate alone (no D) and that seems to be a good thing although not nearly as effective as the greens.
And the final thing I've been trying - vitamin e. This came about by looking at what's in the greens that may be helping. I've been a bit hit or miss with this however I think it may be beneficial. Hard to say at the moment.
Another theory to throw out to the brain trust. The vibrations are an anxiety reaction (to something unknown). At one point, Mike mentioned that the vibrations were worse after he exerted/sweated. Low Zinc has been associated with anxiety/low GABA/excess glutamate. When we sweat, we excrete Zinc. Maybe some Zinc supplementation possibly coupled with vitamin B6 would help here.
Just to be clear, I wanted to point out that although Tegretol stops (or greatly reduces) the vibrations, it doesn't stop me from waking up periodical feeling "weird." So I think this proves that, in my case, the vibrations are not the causing the spontaneous wakenings, but are probably a symptom (anxiety reaction?) of whatever is
Lots of folks have mild disc degeneration so it's hard to know whether this is really contributing to our issues.
I've been trying to get on a keto diet, but I think I'll take it a lot more seriously now.
FWIW, I read back over some of this thread and tried l-carnitine. It gave me palpitations just like Mike reported so I had to stop it. I don't know why some people have that reaction. Also not sure whether it did anything for the vibrations. The reason I started the l-carnitine was not for the vibrations, but for the neuropathy I seem to have developed in my arms which also mostly happens during sleep. Alpha lipoic acid and acetyl-l-carnitine are supposedly helpful in dealing with peripheral neuropathies. After doing some additional reading, I learned that these might actually be due to carpal tunnel syndrome. I had been waking up with numb, tingly hands for a while now, but didn't think much of it. I figured I just had my hands in a bad position. But then I realized that I also had some mild pain in the underside of my wrists. Of course, I'm a programmer so I type for a living and it wouldn't surprise me a bit if I've developed carpal tunnel. The fun never ends...
Tried posting this before, but it didn't take...
Some of you might be interested in this woman's Web site in which she recounts her son's struggle with palatal myoclonus (among many other things). Some of us have a clicking sound in the ears which is a symptoms of palatal myoclonus. She also mentions in her e-book that her son also suffered from diaphragmatic myoclonus. I've been wondering with the sleep vibrations are actually a form of this. Some of us (including me) have reported that the vibrations seem to emanate from the diaphragm area. Although from what I've read, most of (the very few) documented cases don't persist into sleep.
Anyway, this is her Web site if you're interested: http://www.sherrijonas.com/store/c1/Featured_Products.html
Just checking in. Not much change with me. I'm going to be scheduling an appointment with the gastro practice at Mass General in Boston to see if there's anything to my reflux theory of what's going on with me.
CBD oil doesn't seem to be doing anything for me.
Ricepeg, I'm wondering if you've started with the beta-blockers and how that's working out for you.