Xyrem

[Cort]

Xyrem is a kind of fairly new sleep medication that's hitting the ME/CFS population now. A study presented at the IACFS/ME conference a few months ago touted its effects and I just talked to someone who thinks its wonderful. It's purportedly able to stop those delta intrusions that are commonly found in ME/CFS. Has anyone tried it?

I have a page on the website on Xyrem. Check it out here.

 

[Stuart]

Xyrem aka GHB

Xyrem is a replacement (pharmaceutical) for a OTC supplement that was as common and cheaper than tryptophan (before that was off the market due to a bad batch).

An endogenous substance gammahydroxybutyrate (GHB) was sold in health food stores as a sleep aid. One of its metabolytes is a growth hormone, body builders began taking large quantities of it, it was noticed that in high doses would have an anesthetic effect. Due to claims of abuse, but without any supportive data took it off the market.

It can be manufactured, even by accident, a Chinese toy bead was coated with a substance that metabolized into GHB.

Xyrem (sodium oxybate), as a pharmaceutical cost around $500 a month. Large bottles of GHB in health food stores used to be 1/100 the price (gotta love the industry mark up). My FM specialist said it is the only known way to guarantee stage 3/4 restorative sleep, very important in ME/CFS and FM patients.

She would not rx it to me due to my Orthostatic Intolerance (OI) and Postural Orthostatic Tachycardia Syndrome (POTS). Without a sleep study she didn't know if I had Sleep Apnea. All contraindications. Since it suppresses the CNS and she did want me to stop breathing or to get so bradycardic that I arrested.

Still if there was cheap low dose GHB available, I would try it, chronic inability to get sleep or unrefreshed sleep when it does come makes one feel like a zombie and disconnected from the world - bad enough that one can feel life is pointless.

 

[Cort]

$500 a month (another dream dies!). Frigging Pharma. No wonder this country is going bankrupt due to medical costs.

I just saw my dentist - he reattached a bridge that fell out; 15 minutes - $150...I felt like smacking him. Its a frigging crime.

I just heard on NPR that Big Pharma is being given a free ride on the Obama health reform. There will be no government bargaining for drug prices to bring them down. I just don't get it.

 

[Stuart]

Devin Starlanyl on being a Xyrem Lab Rat!

Cort, very good article on Xyrem. This is from a FM, CMP perspective, but there is so much overlap and similar dysfunctions with ME/CFS. (I tried to upload it but got message: Xyrem.pdf: Your file of 114.1 KB bytes exceeds the forum's limit of 19.5 KB for this filetype.) Here is the link http://www.sover.net/~devstar/Xyrem.pdf

She mentions some geloid masses and TrP's that sound like what you have dicussed as well, some very good insight on them and how Xyrem worked on them.

Also a very good discussion on the build up of toxins and various compounds (pathogens?) in tissues and cells from trauma (disease) and specifically in the tissue called the "ground substance."

It seems that Xyrem which is to get you restorative stage 3/4 sleep also seems to be performing a detox reaction. It seems from her article she went through a type of Herx reaction, but eventually has made remarkable improvements.

Might be interesting to get a group to do as through a "lab rat" testing of it on ME/CFS patients. Maybe add it into Michael's protocol for those who have severe sleep problems still?

 

[August59]

I was on Xyrem 4.5 ml 2 times per night for 6 months and took my 3rd sleep study while on it. The only differences in my study from my previous 2 studys was that I was able to get 8 minutes of Stage 3 and 4 sleep as opposed to 5 minutes without it. My studies based on length of sleep determined that I should have been getting between 80 and 90 minutes of Stage 3 & 4 sleep. I also had 4 incidents of central apnea while on the Xyrem, which I had never had before.
I actually had my 4th sleep study about a montha ago and this time they added the MSLT study the following day. Between the 2 studies I scored an almost perfect narcolepsy diagnosis. I entered REM sleep in 30 sec. on one of my nap test.
The only thing that I can say about price is that when I first started taking it I got enough for 4.5 ml's 2x per night for $30 a month through BCBS. I changed jobs and had to go with Cigna and it went to $100 a month. Obviously quit taking it at this point, plus the central apnes bothered me a little bit.

 

[August59]

Just an addition - The 4.5 ml 2x /night dose is a heavy sodium load. I was told by my sleep doctor that had gone on an actual plant tour, that the FDA required them to add the large amount of sodium. Without the sodium it is pure "date rape" drug and the Xyrem is the most controlled drug that I've ever encountered. I don't believe a pharmacy is allowed to carry it. It has to come directly from Xyrem manufacture.

 

[CrazyDaisy]

Xyrem facts

Hi All,

I haven't gotten around to introducing myself as yet, still reading up on everyone else's posts. I will do up a concise intro soon but I read this thread and OMG... I just had to reply.

My doc at Holtorf Medical Group gave me this Rx but I never got it filled. It is now $1500 per month's supply. Yes $1500. Insurance will only cover it if your Dx is narcolepsy with daytime sleepiness and cataplexy. It is distributed from a central govt pharmacy. There is a subsidized plan where the cost is $0 if you income qualify...

Around the time all this was happening (I hadn't had real sleep in about 2 months at that point) the combination of trazodone, ambien, xanax, my pain meds (oxycontin and tramadol), 20-30 mg amytriptyline and 5HTP finally allowed me to sleep. Coincident (not) that it happened the night we had just adopted two new dogs to fill our aching hearts...

I was initially very upset about the xyrem... geez, a bioidentical neurotranmitter that helps one enter Stage 3/4 sleep and induces growth hormone release, just what I need (and just what the doctor ordered!). But the DEA wins again, unfortunately. It is easy to mix up in your tub, but I would never try that since there's no at home way to QC the batches and I am not interested in poisoning myself further. Plenty of info on the web if anyone is feeling lucky ;-)

I still use the cocktail listed above but am bringing down the dosages. I do not know whether I am getting deep sleep or if the alpha wave intrusion is still a problem. I assume it is, and this 'chemical' sleep is not refreshing. The only thing I can say for sure is that I am out from 5-6 hrs, which is a nice vacation from my symptoms.

 

[CrazyDaisy]

Oops, I take so much at night it is easy to forget... I also take 12mg sublingual melatonin. I've tried many herbals to no effect, well upset stomach actually. I think it is the valerian in the combo herbal sleep remedies.

 

[August59]

CrazyDaisy have you had a sleep study or the main test for narcolepsy is the Multiple Sleep Latency Test - MSLT. It's the study that is done during the day. Every 2 hours they put you to bed for 30 minutes to see if, how long, how quick you feel asleep and what stages of sleep you may have entered. They do this for at least 4, and sometimes 5 naps. According to neurologist, that ordered and read mine, that most people will take at least 15 mins. to fall asleep and most will not sleep at all on at leat 2 off the naps.
With my chronic fatigue I knew what was going to happen before she gave it. I slept on all 4 naps, avg. sleep latency (or time it took to fall asleep) for me was 3.6 mins, I entered REM sleep on all 4 naps and most of the time it was within 4 mins. of falling asleep. My worst nap was 1.6 mins to sleep ans .5 mins (30 sec.) until I entered REM sleep. Had Alpha intrusion on 2 naps as well on the over night study and it coincided perfectly with the about the time my pain med wears off at night and my sleep goes down hill quick from there.
I would be willing to bet that most people with CFS would perform as I did on my test and she gave me a "Severe Narcoleptic Diagnosis" and put me on 60 mg. of Adderall and said if that doesn't work we will move up to what does. It works 90% of the time, but the other 10% is a lost cause because when it hits I'm down. I have no cataplexy at all and I tested negative for the "Bio Marker" that is 96.7% (? - sarcastic) accurate. I'm hoping the narcolepsy diagnosis along with my severe cervical stenosis (my spinal canal is down to 5 -6 cm depending on who's reading it)diagnosis will help me with disability. I would much rather work though if I can stick it out for 5 more years would be good.
If you could get the study and the diagnosis then your Xyrem would be much cheaper. My sleep doctor got it for me based on Excessive Daytime Sleepines about 3 years ago and I only had my study done 3 months ago. Might be worth a try and I wish you the very best and hope thst it works if you do get to try it.

 

[Finch]

Nobody ever thought of giving me a sleep study test. I asked one of my doctors about it once, and he just told me he already knows what they'd find, so why bother? Also, with my type of sleep disorder, I don't know that I'd ever fall asleep and give them anything to do the study on!

My current specialist offered me Xyrem, and I was tempted, but it scared my husband, so I declined. Reading some of the above regarding orthostatic intolerance and sleep apnea being contraindications, I'm glad I declined. I've felt all my life that I may have a slight central sleep apnea problem. My current cocktail seems to be working to at least make me feel as though I'm sleeping, although I'm sure the quality is not good.

 

[August59]

I used the Xyrem even when I was on narcotic pain medication, but the doctor just decreased the dosage accordingly. With it being a liguid it's very easy to finely adjust the dosage. In some ways it's better than say Ambien or Lunesta because it's not addictive at all and you may have one bad night after discontinuation, but that's it.
The best sleep that I've gotten so far was taking 4.5 ml of the Xyrem along with Ambien CR 12.5 mg. Quick to fall asleep and would sleep for a good 6 to 7 hours. Bear in mind this was under close supervision with my sleep doctor. It's just that Xyrem is so expensive and the sodium load caused me some minor problems due to a little edema inthe calves and I have Vertigo and the sodium made me a little dizzy waking up some days. Trazadone worked pretty well, but I have a mild allergy to it or something. My sleep doctor uses it a good bit and has been part of some studies on it. His experience is that most doctors don't tell their patience that it has to be taken 2-3 hours before bedtime for it's half-life to coincide with your typical sleep cycle into the deep sleep periods ????? Beyond me. Hope you get things figured out!

 

[Wayne]

Xyrem - Alpha Stim - Saunas

Hi All,

I'm not sure if this is the best place to post this. It may be a bit off topic from Xyrem, but would be on topic for possible ways to improve sleep. I've posted before that I use micro-current therapy (alpha-stim) and that one of the benefits (of many) is somewhat improved sleep. This has been pretty dependable for the last year or so.

I then started doing regular far infrared (FIR) saunas in June. At first I noticed improved sleep, but it was fairly sporadic. One good night, followed by regular disrupted sleep for several nights. As I kept up the FIR saunas, the good sleeps became ever so gradually more frequent. Then about a week ago or so, I began getting greatly improved sleep almost nightly.

I'm currently feeling like I'm in the beginning of a process of making up for a very long-term deep sleep deficit. From what I've heard this can take as long as several weeks to accomplish. But I'm feeling somewhat optimistic at this time that I may be able to make some more progress in this regard. It seems pretty clear that the FIR saunas have been the catalyst for these recent improvements.

Best of sleep to all.

Wayne

 

[Finch]

Hey Wayne!

Do you do the FIR saunas at home, or do you go somewhere that has it? What is it like? My sister, who does not have ME/CFS but does have tons of stress and other mysterious health issues, does FIR and really thinks it's great. I've been curious about it for awhile!

Sorry, this is getting off topic, but I'm curious.

 

[andreamarie]

I tried Xrem about eight years ago. My insurance covered it 100%. I have good insurance and a sleep specialist who's a psychopharm and knows how to code. It didn't put me to sleep. I called the company and the pharmacist said to up the dose slightly. It still didn't work. It gave me that awful drowsy feeling that is between sleep and wakefulness. I did not take it with other sleep meds but did continue the Neurontin I take. I had a sleep study fifteen years ago and slept nine minutes. I'm allergic to adhesive (the only allergy I have) and broke out in hives. Also, I couldn't sleep wearing so many clothes. My sleep specialist says it's done better now but neither of us are enthused about repeating it.

 

[cfidsurfer]

My xyrem experience

I took it for 3 weeks 4.5 x2. It took 2 hours to kick in but wouldn't put me under. I just felt unpleasantly drunk w/ heavy limbs and also experienced muscle pains. Maybe it didn't work for me because my doc stopped 100% ambien & 50% klonopin. But congratulations for all those who it helps!

 

[Sasha]

Anybody know quotable Xyrem/CFS sleep deficit studies?

Hi all - I have managed to get a referral to a sleep clinic after reading that PWC may have alpha intrusions on their sleep EEGs and lack of Stage III & IV sleep, and that this may be the cause of the sleep being non-refreshing. I'd like to be able to send print-offs in advance to the clinic of any published scientific papers that demonstrate this and also the results of any completed clinical trials of Xyrem (or anything else that may increase Stage III/IV sleep in PWC).

All I've found so far is this protocol of a trial of Xyrem on PWC by Dr Natelson that is marked as completed (but I can't find any results on the net); Cort's mention of two studies of Xyrem for fibromyalgia (thanks, Cort!); and a summary by Cort (thanks again!) of a paper by Hone et al. of a trial of Xyrem on CFS patients given at the IACFS/ME conference this year.

The latter study in particular would be good to have solid, quantitative details of so that I could send them to the clinic. Does anyone know if any of this stuff is published anywhere, with quantitative results? I'd like the sleep clinic to be ready to do the right test and to consider the best medication and I want to be sure to send them the best info I can - trial results published in a science journal, preferably, but even a conference abstract would be better than nothing.

Many thanks in advance!

 

[Sasha]

Xyrem - not available on the NHS in the UK

Since I posted the above message I have been seeing an NHS consultant at the sleep clinic. I asked him about Xyrem and he said that it can't be prescribed on the NHS because of the expense and because it isn't licensed for insomnia in the UK. I thought this might be useful for other people in the UK to know.

 

[garcia]

Since I posted the above message I have been seeing an NHS consultant at the sleep clinic. I asked him about Xyrem and he said that it can't be prescribed on the NHS because of the expense and because it isn't licensed for insomnia in the UK. I thought this might be useful for other people in the UK to know.

Thanks for the heads-up Sasha. I was pretty sure this was the case, but its good to have confirmation. I think it might be prescribed for narcolepsy.