severe sleeping "disorder"

[joanie]

I read several week ago in a post that someone participated in a Xyrem study (the drug used for narcolepsy.) Has anyone tried this for severe sleep deprivation associated with POTS? thanks.

[Sunfish]

hi joanie-

i don't have the answer to your question but don't think we've "met" before so just wanted to say hello. i'm actually seeing a sleep specialist on thursday for the first time & was curious about your post but didn't recall reading one about this med earlier. i couldn't find it in a search either. did you read about it on this forum or elsewhere?

i hope someone else has some info for you!

melissa

[Sophia3]

Hi

I was in a GHB study years ago prior to my POTS or ANS dysfunction dx. so the sleep doctor had no idea about that stuff. Just knew I had horrible chronic fatigue.

Xyrem is GHB. I had severe INSOMNIA that the sleep doc hadn't seen the likes of and alpha-delta disorder. I get very little 'refreshing sleep' when I do sleep. It also didn't help my fatigue or fibromyalgia. a few in the study had outstandiing results.

Also the drug refused to put me to sleep some nights and it got so I had to take Klonopin with it. Also you have to take a second dose 4 hrs after the first to sleep thru the night.

But we now know with ANS problems, depending where are catecholamines are, the same drug can hit us differently.

I drank the medicine in compounded form..you were supposed to get into bed and drink it it was so 'powerful'. I was often awake 90 minutes after taking it.

But many labs around the country allegedly are still using it for studies.

Good luck if you get a chance to try it.

[joanie]

Thanks to you both. It is my 16 year old daughter who has POTS. Besides being on the DYNA website, I have been looking in at yours for a while. What a great group you all are!! (as are the DYNA parents.) For some reason, I couldn't post on here, but I finally bothered Michelle about it and she set me straight. (Michelle, you may not remember but we met several summers ago at the DYNA chill. I kind of lost it at one point when I realized just how sick Lindz could get..you helped a lot. ) Well, we are there, folks- pretty sick. But- to the Xyrem. Sophie, I had never seen this mentioned anywhere else, so it brought me out of "hiding." When Lindz got her POTS diagnosis at Mayo almost 2 years ago now, she really didn't seem to sleep at all. No difference with day or night. We kept getting blown off about this- but we knew that she really couldn't sleep. Mayo did pay attention on the second visit. They put an actigraph on her wrist for two weeks to measure movement- they can tell with this, they think, if she sleeps or not. (THe dr. recognized that an overnight sleep study wouldn't do it, because she probably wouldn't sleep.) When they contacted me with the results- they said this was a very unusual and extreme situation- that she wasn't getting any significant sleep at all. Well, we knew that. I asked them if they could fix it (MY gold standard at the time- now I know that helping it would have been plenty..) and they said they didn't know what "it" was. We didn't return, because she was trying to start her soph year in high school, and it wouldn't have been a quick trip. Well, she made it 2 days, and hasn't been back since.(She should be a junior.)

ANYWAY- one of our ancillary dr's suggested she had a sleep disorder at the route of the POTS "outbreak"- seemed like as good a theory as any. He finally put her on Xyrem. It is a liquid- highly controlled (it's the date rape drug) and was deveolped for narcolepsy.I'm told that narcoleptics fall asleep during the day becase their sleep at night is not deep enough.I t tastes bad, causes her to twitch around, you have to play with the dose, give it every 4 hours, if the dose is too low, you won't go to sleep, upsets her stomach so badly that she has to take zofran before to keep it down, etc. etc. I guess with sleep disorders other than narcolepsy, you can go way up on the dose. (the nausea is supposed to subside after a while, but with some it never does.) When she is out, she is out. She wouldn't wake up for anything (a little scary) and if she gets out of bed and falls asleep elsewhere, I can't get her up to move her. HAving said all that, it DOES regulate her days and nights. She is basically up during the day, and sleeps at night. (It seems to be a constant, changing battle to get the dose high enough to sleep, but not so high that she feels drugged and sick to her stomach during the day. Of course, with POTS, its' hard to tell where that day time feeling is coming from.) SO, I guess she is better off on it (she reluctantly agrees. You don't have to take it every night, and when she takes a few days off, she is begging to go back on it.) BUT- i really haven't seen amy improvement in the POTS symptoms- in fact, they are getting worse. What I don't know is if they would be even worse still, at her age, if she wasn't on it. The Dr had hoped she wouln'dt need it after 6 months or so- but that hasn't proved to be the case. Two of her other POTS dr's say they have not seen sleep this bad even with other POTS patients..I don't know about that, I have spoken with a few other moms who say their girls are just as bad...And yes, Sophie, we did have to add a tranquilizer into the mix, to quiet her thrashing that happens before she actually goes out.

I know this is a REALLY long introduction - but this is what I know about Xyrem, and I would appreciate it if anyone has any more info or ideas (Should we go for a week long sleep study- would they be able to offer any other helpful meds?) etc. etc. Thanks for being there. Joanie

[Sophia3]

A week long sleep study is absurb at this point.

Has she had an overnight study?

The GHB I drank was just a mild salty, flavorless mis. IT IS VERY SAFE to take and has no residuals left in the body.

Your daughter is a complicated case but you can NOT TELL about the brain when sleeping unless you have a sleep study with electrodes hooked up. Has she had that done?

This article mentions a study by my ex sleep doc but my study was in the mid 1990's.

http://www.fibromyalgiasupport.com/fibromyalgia.cfm/id/4850

[joanie]

Yes, one of the local dr's did insist on a sleep study with the electrodes- but she didn't go to sleep all night. They didn't know what to do with that. She also had an MRI of the brain- said it was OK. .I know that the GHB is not supposed to have residual effects, but, with her, I think it is . When she comes off of it for a few days, her appetite is much better. (She is losing weight like crazy.) Thanks for the study...Joan

[Michelle Sawicki]

Yes, I do remember you. I sent you a PM.

Welcome to the forum.

Michelle

[Sophia3]

joanie

when I mentioned GHB has no residual affects, I meant in the body...or so science used to say. Used to be the drug didn't show up in autopsy. Years ago it was used as an anesthetic in Europe I think.

As far as your daughters reaction, anything is possible with this illness and meds. I used to have some weird reactions to the GHB and other times it would make me sleepy...other times fed the wired/groggy sensation. The weirdness would be like my muscles would act strangely as I walked around the house. I forget what that was called but it's been 10 years since I was in this government study for the medicine. I hope your daughter gets help. I was a complicated case myself.

Also before taking the second dose, many people experience 'the dawning' effect about 3-4 hours after the first dose. The drug has a short half life. Some would wake up and be clear headed. Many people would take advantage of this and do some paperwork. I remember once waking up with details of a recipe of some dessert I had made a few years before. .. My sleep doctor found that interesting. Also I would double check my check book before going back to sleep. I was on the study for months. It was weird but interesting and I was grateful for the opportunity to try it.

[joanie]

Thank you so much for your interest and info, and concern. We will keep at it...Joanie

[Sophia3]

Joanie

I stumbled across this site as I thought it may mention my ex sleep doc, Martin Scharf, PhD. But the site is so LONG I haven't come across it yet., lol Anyway, it's interesting and talks about the controversial hype of GHB and the good aspects.

http://www.ceri.com/report.htm

CBS evening news did a story on my doctor back in the 90's how GHB was CHANGING THE LIVES OF NARCOLEPTIC PATIENTS. I was on the study for fibro and insomnia (odd a medicine can help narcolepsy and insomnia)

CBS twisted the positive story by starting and ending the segment with a father over his comatose daughter. The daughter had gone to a rave club and taken the "home made street version of GHB" as opposed to the very safe pharmaceutical version. Though my then doc looked sincere and intelligent and narcolepsy sufferers were GRATEFUL to be able to function from the drug, CBS left the unenlightened with the impression Dr. Scharf was trying to legalize a 'date rape' drug. It really made us all angry but that's the media for you. Distort the facts.

But one patient with Fibro had walked with a cane for years and the GHB helped her walk within two weeks and wash her car and even go horseback riding a month after use. Sadly, I had "no such miracle" so we are all different. What helps one, does'nt help another.

I also think the more autonomic severity we have, the tougher it is to get help from drugs because our own body chemistry can vary from moment to moment. Its all complicated but we all have to try diet, exercise and or medications that we deem safe for our own personal situation. Good luck. But after 15 years and many meds, some of us are cynical I am afraid.