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Avatar universal

Narcolepsy AND Insomnia. Xyrem ruined my life.

About a year and a half ago I did a sleep study and was diagnosed with narcolepsy. First, they advised me to try several different stimulants, but each one made me go insane. I shook constantly, I went from smoking a little less than a pack a day to 2 full packs a day, I talked constantly, I was panicky, etc. Then, my doctor suggested Xyrem. Here's where things got bad. I took it as prescribed, slowly building up my dosage, until I got addicted to the feeling it gave me before I fell asleep. Not only that, but it made me throw up every morning at least once, and the only way to make the nausea go away was to take another dose and go back to sleep. I was only on Xyrem for 3 1/2 months, because at the end I was taking 5-6 doses a day, and sleeping my life away. Once I stopped taking it, it became impossible for me to sleep. I've tried every drug out there and they all either work for some time and then stop because my tolerance builds or don't work at all. I am now taking 2 mg of klonapins and 100 mg of seroquel. I NEED to nap almost every day. When it gets to the middle of the day, I can't keep my eyes open. But in order to actually fall asleep, I have to take some kpins. I can take 2 kpins in the middle of the day and nap for an hour, and it only takes about 20 mins to fall asleep. At night, I take 2 mg and 100 of seroquel and it takes anywhere from 1-3 hours for me to fall asleep. I can't sleep without taking some kind of prescription medication. None of the drug store sleeping pills do anything at all. I believe that my Xyrem abuse really messed up my head. I don't want to have to be this medicated for the rest of my life, or worry about running out of my prescriptions early because I need to take extra sometimes for the rest of my life. I just want to be able to sleep normally again. I've tried 6 different doctors and no one can help me. When I try to sleep without medicine, I get anxious, sweaty, I can lay still, and I lay there for hours and honestly it feels like torture. Please, someone help me. I have tried everything, and it's getting to the point that I frequently have suicidal thoughts because I don't want to live like this forever. Please help me.
2 Responses
535822 tn?1443980380
As a fellow insomniac I sympathise Have you told the Doc you wish to be weaned off all the meds ?Getting anxious is not nice I know but after a few nights that may stop, you do need some help in weaning off them..have you looked up online details how its done ?
Avatar universal
Xyrem in specific didn't ruin your life. Taking psychotropic drugs will always result in tolerance developing. This is basic biology. Continuing to up your dose just accelerated it.

You have admitted to sleeping your day away, so there's another issue: not regulating your daily activities and scheduling.

Taking benzodiazepines is also going to work against the deep sleep you need, compounding the problems for which you were prescribed the Xyrem.

If you're on antidepressants, those are another chemical strike against acquiring deep sleep and changing your body's normal processing.

Society has dramatically swung toward trying to cover symptoms rather than treating causes. Sleep disorders are at epidemic levels, but are characterized as nonexistent because "a lack of sleep never killed anyone", which is false (lack of sleep kills, even if not in the short-term).

The first thing people do when they have sleep problems? Drug themselves into stage one sleep (and likely drugging themselves against stage 3). Or they take stimulants during the day. Or both! Depressants at night and stimulants in the morning. Consider this incongruity: Caffeine is the only socially celebrated addiction.

Drugs just modify normal body chemistry. Far fewer people have "defective" bodies than the more common problem: lifestyle and culture are ruining sleep and sanity. Drugs block people's bodies from doing what they're built to do. No questionably-indicated (and usually mechanism unknown) psychotropic drug is going to "fix" the normal and natural processes of the human body that developed over millions of years. Culture and social expectations are the problem, not the human body.
I believe a lot of what you said. I took doxepin for years and at one time also took a  sleeping med. They were easy to quit which I did every year or so since they didn't seem to work after a while,

I have read a few insomnia solution books and found a solution to calm my mind from my version of their techniques. I meditate on my favorite indoor wall climbing route and yawn to convince myself I really am tired beforehand. I am usually asleep before I have climbed very far in my mind.
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