anybody have both apnea and narcolepsy?

Yeah, like I said, scary drug. Just do a search for it and look at all the black box warnings. I know he has a number of patients on it and I don't think any of them have died, but respiratory depression/distress is a concern. They have you take it on an empty stomach several hours after eating so I guess if there's nothing in your stomach to throw up the risk of aspirating isn't that great? I really don't know, but the nurse at the pharmacy was very adamant about not eating or drinking at minimum 4 hours before taking it.

My life is completely dysfunctional and I'm failing on other treatments. I need the sleep at night the most, I don't get any deep sleep and Xyrem would give me that. I'm depressed and think about suicide too, so maybe he thinks the benefit might outweigh the risk, I mean, if I'm going to die anyway I might as well try something first.

I dunno.

Obviously this is a decision you must make for yourself. If my risks of an adverse reaction were no greater than anyone else's, and my life were as dysfunctional as you say yours is, I would certainly consider taking this medication, even if I were afraid. But that's me.

Would you feel better if someone stayed with you the first night? I bet after one night of it, you'd feel less scared. Don't you think so?

nobody wrote:I'm depressed and think about suicide too, so maybe he thinks the benefit might outweigh the risk, I mean, if I'm going to die anyway I might as well try something first.

I am pretty sure that is not his thinking. I think it's a pretty standard medication given to people with narcolepsy, especially if other treatments aren't working. My understanding is that it's the best treatment out there (was it for cataplexy, in particular? can't remember now).

Did you fill the Rx?

I'm still unconvinced that the benefits outweigh the risks - in addition to the cost and the huge PITA it is to get. like I said, I been on the fence about it for months, hoping to find something else that will be less risky, cheaper and easier to get.

nobody wrote:I'm still unconvinced that the benefits outweigh the risks - in addition to the cost and the huge PITA it is to get. like I said, I been on the fence about it for months, hoping to find something else that will be less risky, cheaper and easier to get.

If I could get it prescribed, I would try Xyrem tonight just to empirically determine if it would help me sleep better even though I don't have narcolepsy--just because I am so close to absolute despair from fatigue and tiredness.

If you are having suicidal thoughts, then do you have any other "backup plans?"

I mean, the other night I had a panic attack from not being able to sleep and was spiraling into the vortex that leads to suicidal thoughts. So I took 15mg Temazepam. It's only the 6th one I've had to take since getting it prescribed 4 years ago. Within 30 minutes I was stable.

Medicines are tools. Their appropriateness at any moment depends on the risk/reward ratio. Having suicidal levels of mental pain is very dangerous. Much, much more dangerous than Xyrem, IMHO.

Consider the history of gamma-hydroxy butyric acid (GHB):

It was sold in health food stores a few decades ago for $30 a bottle. People used it for legitimate purposes, and some abused it and may have wound up in the hospital. Then a few women got drugged with it without their consent, and date-raped. This is of course a heinous crime. The result was that GHB was banned. We ban any unregulated drug that causes a handful of emergency room visits or other incidents. Meanwhile alcohol, which has no redeeming medicinal qualities at all and is responsible for many 10000s of deaths a year, remains legal. And it still remains the date-rape drug of choice.

So the consequence for the estimated 200000 people in the USA alone with the illness of narcolepsy, is that the right to manufacture and distribute one of the most effective drugs for narcolepsy was granted by the government to Jazz Pharmaceuticals. They sell it as the sodium salt for roughly $5000 for a months supply.

The original plain old GHB was not a sodium salt, BTW, so it didn't have the high sodium drawback.

This is what the government accomplishes in its efforts to "protect us." Ruin the lives of 200000 to dubiously save a few.

But anyway, as you can imagine, since being classified a controlled narcotic and with the date-rape media coverage, propaganda against GHB became extreme.

I'm not trying to say that it is to be taken lightly. As with any depressant, it is critical to have a medical professional titrate a safe and effective dose. And anyone can have a freak reaction to anything.

As for "black box" warnings, they are a product of the regulatory system's complete inability to convey a sense of proportion to the consumer. For example, I was trained in Chemistry, and was lucky enough to have taken one of the very few chemical safety courses taught in any college chem curriculum.

We studied the material safety data sheet (MSDS) for common table salt--sodium chloride.

Well from the MSDS you would have no way of gaining an intuitive sense of the true relative danger of table salt vs. plutonium. The MSDS of salt sounded like it was one of the most toxic and hazardous substances known. Because the MSDS deals with the context of industrial scale spills, where a dust cloud may be produced that is dense enough to suffocate you. Context matters. And "safety information" is often written by "cover your ass" legal groups who only care about minimizing liability by scaring people into taking maximum safety precautions, even for table salt. But the result is that if you are simply holding a can of Morton's Iodized Salt in your hand, you get no sense of proportion of the actual danger. In that case, not very much, unless you try to eat a large portion--but unless you are seriously mentally ill the objectionable signals from your taste buds would dissuade you from continuing to eat it long before you reached a fatal overdose.

To summarize, basically if 1 in 1000000 people have some suicidal thoughts or wind up in the hospital with an adverse reaction to a medication, even if the incident is not for certain caused by the particular medication, (ie., they may have taken other drugs, or there are undiagnosed contraindicating medical problems) a black box warning may result.

Have a look at this:

http://www.biopsychiatry.com/ghb/authentic.html

I hope you find an effective and safe treatment which leads you to improved health.

I'm already well aware of the history, Jazz's monopoly, various websites, arguments for/against and such regarding GHB. Still don't think it's safe for me. The only other way to make GHB that I'm aware of is with potassium which can be harmful if you get too much.

This has been an interesting thread for me. I've been on CPAP for 6+ years .. the apnea episodes with CPAP are statistically insignificant .. I'm very compliant with CPAP .. but have a lot of daytime sleepiness. What makes teh daytime sleepiness intersing is I'm prescribed 250 mg of nuvigil. I can take that at 7:00 am and nap at 9:00 am. I did a MLST 4 days ago. The hospital sleep center called and said my test was 'abnormal' and the sleep doc wanted to see me. That's next week some time.

Funny thing is .. I was asked a handful of times if I had cataplexy but no one gave me a thorough explanation of what cataplexy was - perhaps a few example but I'm sure it's more than that. I had looked it up on my own from several sources and I'm still not sure I know.Understand I'm an obsessive snot who doesn't like vague in definitions. That and I'm cursed with a slightly higher than normal blood level of skepticism. I do know my head flops down every now and again .. is that cataplexy? falling asleep briefly? or just something that p*sses my boss off?

I've tried cleaning defining the differences between narcolepsy and idiopathic hypo somnolence. That was a LITTLE easier than doing the cataplexy definition thing.

One thing I'm confident of .. it's possible to have apnea + another sleep disorder. My family doc and endocrinologist have sent all the usual suspects home that fall under their domains.

One last thing .. for those who have had a multi latency sleep test, is that about one of the dullest things you've ever done? i had a harder time staying awake when I was out of the bed than when they let me get in it for my 15 minute nap. I wasn't supposed to sleep between scheduled naps. I tried reading .. that made me sleepy. Dittos with web surfing. maybe if they installed a bowling alley ....

Cataplexy comes in quite a range. You will find it hard to pin down an exact diagnosis of all but the most severe/obvious cases. It's a disorder of REM. It (REM sleep) basically intrudes into your wakefulness when you experience emotion. It can range from slight muscle weakness to full out collapse. You are awake but you cannot move. And it's not always the same. Sometimes you may laugh hard and nothing happens, other times maybe your head droops a bit or your eyes close and other times you collapse to the floor. And other times just the thought of something funny causes it. Some people only ever experience a few episodes and for others it's near constant and everything inbetween. It's an elusive spectrum.

Yes, I have both narcolepsy and sleep apnea.

Narcolepsy fascinates me.

I've known people to take only 5-10 mg of dexamphetamine and it's changed their life.

Some people have straight out narcolepsy - 4 REM periods in their MSLT - and only need 5 mg of dexamphetamine to keep them awake.

Sgt_Pepper wrote:I do know my head flops down every now and again .. is that cataplexy? falling asleep briefly? or just something that p*sses my boss off?

that sounds more like narcolepsy.

Sgt_Pepper wrote: One last thing .. for those who have had a multi latency sleep test, is that about one of the dullest things you've ever done? i had a harder time staying awake when I was out of the bed than when they let me get in it for my 15 minute nap. I wasn't supposed to sleep between scheduled naps. I tried reading .. that made me sleepy. Dittos with web surfing. maybe if they installed a bowling alley ....

Yeah it is a long, dull test isn't it. I haven't had an MSLT myself, but I've monitored many of them. Did you let the techs know when you were close to dozing off during the breaks?

Don't know if it's narcolepsy, but I fall asleep at some of the weirdest times, like while having a conversation, driving down the road, sitting at a stoplight, writing a report (45 pages of whatever letter I had down when I went out) etc. It was the falling asleep while driving episodes (fell asleep once, missed a turn and woke up 20 miles off course, woke up in the ditch once at 65 MPH) that finally got me to do a sleep study.