Is xyrem worth the RISK

[allright]

Seriously. many countries frown on the use of drugs USA uses on its people.
This one looks headed for failure.
Are you guys really happy with the side effects long term. Its a nightmare for the general population and the druggies not the average user love its ability to stone them.

What is xyrem really doing for you to justify the risk.

Provigil has failed and its now used by truckies

Drugs are bad and must be used carefully and I don't like what I am reading from members taking xyrem on this board.

[yawningdog]

Is Xyrem worth the risks? Odd question. Not everyone is having a problems with Xyrem and the majority of the Xyrem side effects are not direct effects of Xyrem. They are caused by the over load of deep sleep that one gets from Xyrem. Having been sleep deprived for decades, deep sleep came as a shock to my system and it took time to adjust to it. I used exercise and vitamin supplements to aid my body in that adjustment.

What 'risks' are you specifically worried about?

There is no comparison to life on and off Xyrem. Without it I will sleep 10 to 12 hours at night and need a 1-2 hour nap, everyday. I will spend all day tired and yawning. If I need to run to the store, I will have to do it before 11am. I feel that I am not safe to drive, un-medicated, in the afternoons and evenings. (that would definitely mean that my kids quit baseball) I will be able to do very little and spend most of my waking hours lying down.

Even medicated, I got up at 7am, took a ritalin, took another at 11 and one at 3. I was able to drive throughout the day but, I still needed a nap. I would still go to bed between 8 and 9pm to get up at 7am.

Xyrem is the only medicine that treats the underlying cause of narcoleptic symptoms. I sleep for 8 hours, I don't yawn, I don't nap, I don't use caffeine on a regular basis. I am for the first time in my life not overweight. I run a business from my home, which I did on ritalin as well but, now I am starting to reclaim my farm into a working farm. None of this would be possible without Xyrem.

[Willow2007]

Ah, you've been reading all the websites with horror stories, I bet. Anything can be abused, however, Xyrem has done wonders for me. I've lost 75 pounds, I was just about ready to try disability because I was unable to stay awake and alert as a nurse. I can now work 24 hours a week, get my lawn moved, clean my house occasionally, bought a Kindle so I am actually reading. I don't have any side effects from Xyrem, unless you include losing 75 pounds that I needed to lose.

If I don't go to bed soon enough after taking xyrem, I may wake up 4 hours later on the couch. I get up at 445 am on work days, without a problem. By the time I get out of the shower, i am ready to go to work. I work 12 hour shifts, taking care of 39 elderly people, giving them meds and treatments, dealing with doctors and pharmacies. And i can do it, and I am no more forgetful or tired at the end of the shift as anybody else. I pay for it the next day, as I also have fibromyalgia.

Quit reading the websites of horror. They don't know what they are talking about. My body is making enough HGH to lose this weight that I have fought for most of my adult life. Xyrem used to be sold in health food stores for pennies a dose, before they found out it is good at making deep sleep for PWN. the date rape stories are possibly true, although anyone risking putting xyrem in someone's alcoholic drink is risking a murder charge.

W

[Quinn]

Answer: yes. It is worth the risk.

It has not been an entirely smooth ride for me and yet: how much better it is than it was! I was approved for disability the same day as I started Xyrem. I suspect that within 9 months, I won't need it. (I do have standing tolerance issues and muscle fatigue, and so I do need to continue PT to make improvements) But I am now NOT using any stimulants AND I nap AT MOST once a day and am alert and not feeling like every step is hopeless and pointless and in quick sand. Yes, that is worth a few bumps while figuring out my proper titration schedule. Oh, hell yes!

[dcullins]

It is absolutely, unequivocally, and totally worth the risk (if there is risk). I'm a pharmacy tech, and I'm doing some research for you here...

Check this out:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2725257/
Approximately 26,000 patients worldwide received sodium oxybate from first market introduction in 2002 through March 2008. Of those 26,000 patients, 0.2% reported ≥ 1 of the events studied. These included 10 cases (0.039%) meeting DSM-IV abuse criteria, 4 cases (0.016%) meeting DSM-IV dependence criteria, 8 cases (0.031%, including 3 of the previous 4) with withdrawal symptoms reported after discontinuation of sodium oxybate, 2 confirmed cases (0.008%) of sodium oxybate–facilitated sexual assault, 8 cases (0.031%) of overdose with suicidal intent, 21 deaths (0.08%) in patients receiving sodium oxybate treatment with 1 death known to be related to sodium oxybate, and 3 cases (0.01%) of traffic accidents involving drivers taking sodium oxybate. During this period, approximately 600,000 bottles of sodium oxybate were distributed...

So, Xyrem doesn't cause dependence except for, what - .04% of people?

As for the side effects, 9% of people in the Xyrem trials discontinued the drug due to side effects...
Effexor (an anti-depressant) had an 18% discontinue rate.
Neurontin (commonly used multi-use drug) had a 16% discontinue rate.
Celebrex (arthritis drug) had an 7% discontinue rate.
Lamictal (epilepsy or mental illness) had a 11% discontinue rate.
A 9% side effect discontinuation rate is looking pretty normal now, right?

The bottom line here is ALL drugs have side effects, but so do the diseases that they treat. In the end, it is all about finding balance and quality of life.

[yawningdog]

I bet those numbers on people quitting due to side effects are down thanks to us on TAS. People come here to get help from the people actually taking the stuff! I found help here when I was told by both my doctor and by the pharmacists that Xyrem didn't effect blood pressure.

[sleepymoon]

You can always stop it if you don't like it. I had all sorts of side effects, but they all went away over time, with supplements and drinking more water..

[allright]

I am impressed

Has there been times you may have had been sleep walking eg cooking, doing activities that a sleeping person would not normally do.

Have you woken up with an arm or leg numb because you slept on it. Some are suggesting xyrem knocks you out too much for your body to react or roll into a better position

Like Ambien there is a question of duration of treatment. Weird side effects like zombie walking, driving etc onset after 3 months of treatment.

Your results are all fantastic

Tell me - how close to normal do you think this drug brings you too.

Early twenties or mid twenties
Being a 10
You before Xyrem 2
0 means asleep most of the day every day

[allright]

Yawningdog

Without it I will sleep 10 to 12 hours at night and need a 1-2 hour nap,

Narcolepsy has a strong nocturnal sleep problem so how is it you sleep so well. Allergies do that particular to yeast.

[Willow2007]

After self medicating with cigarettes and caffeine for years, I quit smoking and gave up caffeine for Lent. I began sleeping 16-20 hours a day on the days I did not work. on working days, I slept until an hour before work, going back to sleep right away when i got home. If I had to do laundry, I had to carve out an hour awake during the day to go. The first morning I woke up after taking Xyrem the night before, I was actually awake all day long! I didn't take a nap for about two years. i occasionally take a nap while watching TV but I don't have to. I've been on Xyrem for about 4 years. I worried about starting Xyrem because I live alone, worried about burglars, fires, etc. I work at the hospital 3 blocks from my house, and when the Med evac helicopter goes over, i wake up and wonder for a minute who's leaving. then right back to sleep. I potty trained a puppy by taking him out when he whined at night, although I have to take care going outside and looking up (hint: you fall over) lol.

I can turn in my sleep, I wake up to let my puppy get under the covers, I can wake up to a text message after the first hour or so. I will occasionally wake up to a thunderstorm, but the nice thing is going back to sleep within minutes. My dog knows when the xyrem is wearing off, because he doesn't bother to wake me in the first couple of hours, but if he has to go, its always right before the second one is due, which means I wake up easier. When I get up, I am up. I am awake. Xyrem is definitely my drug of choice. I was probably 20% before Xyrem, even on the stimulants. I am probably 80% now. I have some lazy times, I also have fibromyalgia. but I can do the dishes, vacuum, take care of my dogs, mow the lawn, etc.

[sleepykitty]

A troll in sheep's clothing is still a troll.

[allright]

That is incredible. Really incredible. Its almost a miracle. 4 years with a flawless record from side effects. Ambien has a horrible history.

What I don't get here. What is xyrem doing. Because nocturnal sleep doesn't help a person with N. Yes I know poor nocturnal sleep can make N worse but in of its self doesn't make that much difference.

I don't want to wash through all the websites to get to the truth. Some say it is used to reduce Cataplexy but what you are experiencing is much more. Almost a cure of N.

[alzika]

allright, I'm not quite sure I understand your true intentions over your posts. You trash xyrem and provigil, and then you post another thread basically saying that alcohol and oxycontin can effectively "cure" cataplexy?

What are you trying to accomplish?

[Guest]

removed

[allright]

alzika
No its to understand Xyrem the so called evil GHB of the drug world.

Provigil was destroyed or its credibility was by N sites and message board.

If I just look at complaints about Xyrem then I get a bias view but if I ask the question is it worth the risk then a broader answer is gained.

dejavu

I don't have to tell people about the benefits of alcohol. I can't there is none. Its poison and has trillions of people wasting their money, destroying families, ruining lives, killing people on the roads and in other ways. Its the drug of worst conscequence that is legal.

Oxycontin is the most addictive, most sort after drug by heroin addicts to inject. Its pure addictive giving better results then the heroin high. Its almost thought it was created to make Billions. More addictive then heroin why would you take it for Cataplexy