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Greetings:
The following is the summary of the many responses I received regarding my
questions about myoclonic jerking during sleep and/or falling asleep,
neuromuscular twitching and breathing hypopneas (gasping). My twitching
also started occuring in the daytime.
First I need to thank everyone who responded. I have tried to just
summarize the responses of actual celiacs, however; I had several responses
from celiacs who have a spouse with sleep disorder jerking, etc. I want to
thank those people too because all of the information was educational.
This is probably going to be considered too lengthy for one post so I will
break it into three "parts".
Next I'd like to say that I have personally opted for the "low magnesium,
high calcium" theory as my mag/cal ratio imbalance probably created the
symptoms I have described. I am just now working on adjusting the ratio -
so far thru a mag. iv. last week and beginning to take an oral mag.
supplement. Also currently staying away from dairy products (even tho I'm
not lactose intolerant) that made up a majority of my diet (one blood test
showed high calcium, I'm having other bloodwork and tests done). My
osteopath is supportive but unfortunately out of town alot this summer.
*Its important to get the right kind of magnesium supplements should you be
considering any. Its complicated and a bit confusing.
There is also the issue of what kind of sleeping drug to take. A few
different ones are mentioned. I am attempting to solve the problem that
causes the symptoms tho so that I can alleviate the need for sleeping aids.
Which is something that was not properly addressed by my sleep study dr.
- but I write that off to having celiac disease which is generally
misunderstood - so much so, that unfortunately this kind of problem as well
as having problems with B vitamins, etc. is something that celiacs usually
need to figure out for themselves for the most part. There really doesn't
seem to be a good celiac styled dialogue between gastroenterologists,
nutritionists, neurologists, osteopaths, ETC. Obviously a celiac
specialist would be the best choice - but I don't have that option.
I must say that having access to this ListServ is a major positive factor
in this situation. I am doing much better since instituting the measures
described above. It may be too early to know for sure if I'll get
completely better permanently or not - this is just a snapshot of how I
feel now and an effort to summarize.
I am more than willing to continue communicating on this issue. I am new
to the particular problem and am only beginning to learn about it. One
noble ListServ person in particular has helped me out alot despite serious
health problems of her own. That is the true "spirit" of this ListServ.
Doing Internet research on Magnesium Deficiency (hypomagnesemia) is
advisable - plenty of stuff out there on it.
Here are edited responses to my original question:
*I don't know if I have the information you want, but I've been diagnosed with
nocturnal myoclonus and take 1 mg Klonopin each night - works like a charm.
It's doubtful that any studies were done re: calcium/magnesium intake, but I
take both and still have severe myoclonus. I don't know if it's related to
the celiac or not
*I don't know if what I have is related, but when I was at my lowest my body
began to twitch all over even my tongue was slapping the roof of my mouth.
This was prior to my diagnosis of Celiac. I know take Klonopin for this
because the nerve damage was permanent. This was caused by the depleted
levels of calcium and magnesium. Klonopin completely controls this.
*I am the celiac, not my husband, who also has the myoclonic jerks which
are really small seisures. Most nights he would jerk so bad that he would
wake himself up. My husband's mother had the same jerking, so I would tend
to think that it could be hereditary, but none of the children have this,
so who knows? ...basically the neurologist said to live with it or be
drugged up. And since my husband has suffered with this all his life, he
figured he may as well continue to do just that. I personally think that
this condition is a short circuit somewhere in the brain.
*Several years ago when I said that my husband had low calcium levels, this
was true, but the blood test not only showed that, but also low phosphorus
levels. The doctor put him on Superabsorbeeze, everything is back to
normal there, and his horrendous leg cramps that he suffered from for
years and years are a thing of the past. Now, if he could just get rid
of the jerking.
*Been there - done that. Have you had your electrolytes checked? Most
Dr.'s will check calcium levels, but the symptoms you are having sound more
like magnesium. I was observed "jerking" during a stay at the Cleveland
Clinic. The kept giving me more and more Os-Cal (which was not gf at the
time) and I kept getting worse. Finally an Irish Dr. who was familiar with
celiac had my mag levels checked. I was given infusions and then SlowMag.
*I did have cardiac arrhythmias and twitching and "absences". My doctor
put me on Neurontin, which was originally prescribed for epilepsy, but he
said it calmed the nerve fibers and also inflammation. I've been taking it
for the last 2 years. At first it put me in a trance, but I quickly
adapted to it.
*I also take Restoril (temazepan) which helps me sleep and also quiets the
urinary tract during the night. I've been taking it for so long, I don't
even know if it actually works any more, but I find it hard to get to sleep
without it
*I had the same symptoms that improved remarkably after I went GF. I was
apparently an undiagnosed celiac for a long time, and I always had severe
sleeping problems accompanied with myoclonic spasms (PC for jerks),
tingling, numbness and other neurophysiological symptoms.
*You are right to key on vitamin and mineral deficiencies, but be
careful. Different supplements I take are: Calcium Magnesium Zinc Selenium
Molybedenum in addition to a high-potency multi-vitamin and multi-mineral.
*What you describe may be due to a Calcium/Mag imbalance. If you are using
supplements, you need to take both as Ca will not be metabolized without
Mg.
*It is more likely that you have a problem of chronic sleep deprivation. Just
a suggestion-see you MD and ask for a 2 week supply of Xanax 0.5 or 1 mg.
Take one about 30 min before bedtime. In some cases, once the cycle of sleep
deprivation is broken, you will return to normal sleep patterns. This is not
to say that the problem won't surface again, but if the regimen helps you it
is a good diagnostic indicator of what the problem is.
*I had sleep problems for years (most of my life), with the tonic and
myoclonic jerks (of my fingers). Now I don't - and why? I follow a gluten
free, dairy free, sugar free diet (low carbo also). It's changed my life!
*I get nervous system reactions such as jerking and twitching in bed at
night after I've eaten too much sugar or fruit.
*I have had this lately and discovered it is the 'grass fed' ground beef I
have been eating. The cow must have eaten gluten because I had other gluten
ingestion symptoms along with the jerking: itchiness, gas, diarrhea,
nausea, feeling 'off'. I stopped eating it and feel like new!
*Have you by any chance had any nerve damage due to trauma or too much vit
B6 or something like that? The muscles in my forearms and calves twitch
constantly: looks like the belly of a pregnant cat about to start labor.
And when I lie down, my feet often jerk slightly from side to side. Mine
is due to three back operations and such.
*In January of this year someone mentioned vaso-active amines (you can
find it in the archives). I left them out, and especially sugar. sugar will
do this twitching and nervousness in my legs as well as those vaso-active
amines. (But I am getting similar reactions when ingesting gluten).
*I don't know if I had the same type of sleep disorder. I couldn't sleep
for months and had pains in my arms and legs. I was seeing an
acupuncturist (for pain) and mentioned I couldn't sleep. He said he would
treat that and he placed extra needles in me, and I haven't had the
problem since.
*I also had a sleep study that showed numerous problems (many hypopneas,
tonic/clonic jerks, some apnea episodes) which I believe have resolved
totally when I stay away from gluten, dairy, sugar.
*I was diagnosed with Celiac over 13 years ago, I often wake up gasping for
breath, and also jump/jerk/twitch whatever you want to call it (only when
sleeping), I also grind my teeth a lot while sleeping. I went to the doctor
a few years back for the 'apnea' but was told not to worry about it, that it
was not life threatening, I had not connected this to being a Celiac or to
a deficiency.
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