.....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