Hi All--

I was diagnosed with restless legs and periodic limb movement disorder almost 20 years ago via sleep study. The periodic limb movement disorder is getting worse, but my docs don't seem to know what to do. They say it's a sleep issue, but neurologically based. I've been on clonazepam 17 years.

A few years ago, I suddenly started having hypersomnia episodes, sleeping up to three days without waking. My sleep episodes aren't so long now, but they're more frequent. I fall asleep at work or if I sit down at home in the evening, I go to sleep without even realizing I'm going to sleep.

Is there anyone on the sleep forum with either periodic limb movement disorder or hypersomnia? I'm not only concerned I'll lose my job, but I never really know if I'm going to wake up when I go to sleep.

Any information or suggestions would be so welcome...Thanks. ~~Allie

I am sorry you are going threw what you are.
It sounds like a sleep disorder, I would go to sleep clinic and have a study done Along with seeing a neuro if that is possible for the 2 doc to work together. I do not have periodic limb movement disorder or hypersomnia. But maybe someone else here dose and can help you. I can send you my warm wishes for you to find answers and getting relief. It sounds really hard to deal with ..just sleepin for 3 days. Hugs to you Allie. I wish I could help with some answers . Maybe tell your bosses what you have may help.
Peace Peace
BMW

hi allie too and welcome.


my hubby has plmd. he was rx'ed Requip but refused to take it. it has some really bad side effects. he tried quinine. it didn't help. was even told by his dr to try drinking club soda before bed. nope..did nada.

it doesn't seem to bother him. it bothers me. my hubby has been a body builder for over 25 years. it is not fun to be hit repeatedly by his heavy limbs. he can left and lower a leg over 100x. make facial grimaces over and over for hours. just to name a few things. all in his sleep.

the only thing that has helped even the slightest is extra magnesium and calcium.

he is a very active person. active all day long. we own a health club. the second he gets home and sits down. it's like a button in his rear got pushed. his eyes close.

i don't think i'm much help. so far we haven't found anything to "cure" this. he also snores something fiece, but does not apnea.

did i mention i sleep in my office?

I had the same in the past - though not as bad. You're just catching up with the sleep you lost when you couldn't sleep properly. As long as you sleep longer at night to catch up, you eventually get over it.

.....by enough, I mean more than you normally would - maybe 10 or 11 hours per night. Having 7 or 8 hours per night would leave you just as you are.

I had a few weeks of 14-15 hours sleep per night before I got back to normal.

Certain sleep deficits can be overcome, however sleep movement disorders and chronic hypersomnia are not just things that pass. They are indicators of serious neurological problems.

A sleep specialist may be able to help you, but I suggest getting tested for gluten sensitivity first. I have 3 friends with RLS who went into remisssion on a gluten free diet and every time they cheat it comes back the next day. PMLB is a related disorder.
I cured my lifelong narcolepsy/hypersomnia the same way.

Anyhow, I wrote a paper on it, if you're interested.
http://www.lindborglabs.com/LessTechnical.htm

Best wishes,
Heidi

Thanks so much for the article....and suggestions. I've been gluten free for almost 7 years now, though the tests for celiac were negative twice (both were evaluated at Mayo Clinic). I do have a gluten sensitivity, though, which is why I stay strictly GF. I also have a primary immune deficiency (IgG) and I'm in a research study through the NIH. Though I have numerous bacterial infections every year, my biggest problem seems to be viral infections. My infectious disease doc is concerned that reactivation of EBV will eventually damage my central nervous system and cause neurological problems, which I think is already happening. I just don't know the best place to go to get a good workup on PLMD and my hypersomnia issue. Thanks, again! ~~Allie

Oh Allie,
I was so sure, and you have it even worse than me!

Have you gotten the full food allergy panel(ALISA)? Maybe there is something else making antibodies.
I don't know how strict you are, this article mentions soy and oats as gluten mimics. I know I was eating very little gluten and my symptoms still progressed rapidly, maybe a little bit of soy is keeping you sick?
http://www.healthnowmedical.com/info/gluten_foods.html

You may want to check out Cara's site, The gluten file. She has tons of info on neurological effects. She also posts up in the gluten sensitivity forum here, you may want to ask up there if anyone has an experience like yours.

As far as doctors go.... gosh, I can't recommend any. Mine were worthless.

Good Luck!!
Heidi

Directory of Sleep Centers

Heidi--

A strange thing happened on my way to NC to see my great niece for the first time! On one leg of my flight out to NC, I sat next to a woman a bit younger than me. I was rereading the article you gave me the link to that you'd written on narcolepsy and Parkinson's - the woman next to me mentioned that she had the same article! Her mother has been dx'd with Lewy Body Dementia. We didn't get into many details about why I had the article, but she told me quite a lot about her mother.

I can't help but think that there has to be researchers/physicians somewhere who can help me sort out this PLMD - neuro or sleep related. I'm inclined to think it's neuro-based, but my insurance is not conducive to experimenting with a number of tests to be sure.

Just wanted you to know that I met another person who'd read your article and how interesting that was to me...and to her! Oh, yes, and I wanted to ask about the person you thanked for information on the blood-brain barrier information - I might know him. Email me privately at AllieMGill@gmail.com - I'll give you this person's last name and you can tell me if it is, indeed, the person I know.

Best wishes,
Allie