XYREM for alpha-intrusion - any suggestions?

tbrown1 · Post by **tbrown1** » Mon Jan 29, 2007 1:19 pm

I have posted about his drug before but wanted to update. I was diagnosed back in October with OSA at my titration sleep appt they discovered Alpha intrusion all night. I was put on 1mg ativan 2 hours before bed + 15 mgs regular Ambien. Obviously no problem falling asleep - problem is staying asleep and feeling like I have been to hell and back when I wake up. After a couple weeks I called the doctor back and told them what was going on, he suggested some of the first generation anti-depressants to which I said NO WAY. I have been on that road for 2 years prior to my diagnosis and all I had to show for it was an extra 25+ pounds of body fat. I did not want to further aggravate OSA problem with more weight gain. He finally agreed that Xyrem would help would be the most beneficial in treating the Alpha intrusion but warned that getting insurance to pay for it would not be easy. ( BTW and FYI it is $667.00 per month) He wrote the prescription for Excessive Daytime Sleepiness, which at first Cigna said no to. He went back to them on appeal and they approved it. I am apprehensive and excited at the same time about starting the drug. I so badly want it to work. I have read posts in this forum about restored energy, deep sleep, waking refreshed and an overall feeling of well being. I also don't want to backslide. Anyone out there withe any first hand experience with this drug.... bring it on... I want all the informed opinions I can get before I decide to go down this road. Thanks

skirk · Post by **skirk** » Mon Jan 29, 2007 1:45 pm

I have no experience but am interested in hearing others experience. During my initial sleep study I had 0% Stage 3 or 4 slow wave sleep. During my titration, it was .1%. So my architecture was not good. When I had my consult with the Sleep clinic they never mentioned this to me, I had to read it myself after requesting a copy of my sleep studies.

I have read that Xyrem can improve/stimulate stage 3 and 4 sleep. Anyone use it for that purpose?

Thanks, Steve

Snoredog · Post by **Snoredog** » Mon Jan 29, 2007 2:48 pm

my understanding having Alpha intrusions don't cause arousals they are just "there".

If you don't have Narcolepsy and experiencing Cataplexy, then why are you taking drugs like Xyrem?

It has some nasty side effects:
6. Is Xyrem classified as a controlled substance?

Yes, Xyrem for proper medical use is controlled under Schedule III of the Controlled Substances Act (CSA). Illicit use of Xyrem will be subject to penalties under Schedule I, the most restrictive schedule of the CSA. This means that anyone who sells, distributes, or gives Xyrem to anyone else, or who uses Xyrem for purposes other than what it is prescribed for, may be punished under Federal and state law by jail and fines.

7. What are some possible side effects of taking GHB?

Xyrem can cause serious side effects including:

* trouble breathing while asleep
* confusion
* abnormal thinking
* depression
* loss of consciousness.

Abuse of Xyrem could also lead to dependence, craving for the medicine, and severe withdrawal symptoms

Why do you want to take a drug that is known to cause breathing difficulties with sleep?

If your doctor is just pumping you full of drugs to pacify you maybe it is time to consider seeing another doctor. If I were in your position, I'd ask myself the following questions:

1. Do I want to be labeled as having Narcolepsy or Cataplexy? Kiss your drivers license goodbye, don't let your heath coverage lapse and and good luck with any employer.

2. Do I want to take a controlled substance drug like GHB/Xyrem the rest of my life?

While there is not a lot known about the alpha intrusions, it could very well be the drug itself or another one you may be taking.

I used to go to a pharmacy once a month with a shoebox to get prescriptions refilled, just the copays were $250 a month. Best thing I ever did was say screw that, including the Plavix to prevent a 3rd stroke. Now all I take is a daily Ecotrin 325mg aspirin, a multivitamin and a 3mg melatonin at night. Never felt better. I keep an eye on my hypertension which is pretty much controlled with cpap, but on occasion I take a Lisinopril if it creeps up.

My suggestion:

I would go over to sleepapnea.org and post your alpha intrusion question there for SleepyDave. I'd also do every thing I can to get off of the Xyrem and find a new doctor if you are still seeing the one that prescribed it. Try 3mg of melatonin for a week, I bet it would work as good if not better and has no side effects other than sleep.

snoozeandlose · Post by **snoozeandlose** » Mon Jan 29, 2007 7:02 pm

Whoa--hold the Xyrem bashing. I have just started Xyrem, but if it works shy not try it. So far I am feeling much better. I am only sleeping 6 hours, but even so my brain fog has improved, I am multitasking and remembering details at work much, much better. I feel less depressed as sleep deprivation can cause or exacerbate depression. My doc says many people with treatment resistant depression have alpha wave intrusion and often no longer need the antidepressants in tha amount previously prescribed.

I have Cigna and I didn't think they would pay, but they do. Martin Scharf in Cincinnati has been prescribing this drug for 20 + years with ne problems. He discovered that most people with fibromyalgia have alpha wave intrusion and has been treating it successfully. Many studies show efficacy of Xyrem's use. He founded Tristate Sleep Disorders Center in Cincinnati. Google him.

I lost one job because of memory problems and being too tired to function at work. I am a widow and professional health care worker. I have to support myself so if this works it will save my professional life and give me my personal life back. As it is now I have no life, because I am exhausted. Give it a go and phooey on the naysayers.

tbrown1 · Post by **tbrown1** » Mon Jan 29, 2007 8:09 pm

SNOOZEANDLOOSE - thanks for you INFORMED opinion. That was the original text of my post. Looking for someone who is ACTUALLY taking XYREM not being bashed and reprimanded by someone who has never actually used the drug. My sleep doc is very conservative also a friend of my primary care doc and knows my history which is the reason he reluctantly agreed to Xyrem. I know all drugs pose risks but aside from the ativan and ambien I am currently using I have no health issues other than OSA/excessive daytime sleepiness. I have normal blood sugar, normal blood pressure - a little plump at the moment but since I have started CPAP that too seems to be resolving itself. Thanks for your encouraging words and INFORMED opinion. I know this is a public forum and anyone who wants can post what ever they feel I opened myself up to that when I posted the question. Thank you again for sharing your thoughts and experience. I will take it into consideration while i am making my decision as to whether xyrem is the drug for me. Anyone else who is taking xyrem please feel free to share your experience.

Mask