Xyrem/GHB

[Misfit Toy]

Not sure what a Z drug is @heapsreal

 

[Tired of being sick]

Ok @Tired of being sick -I am in your state...east coast though. Insomnia is the diagnosis. Narcolepsy, too, but from insomnia. I don't have prescription coverage. I am on SSD. I contacted SDS pharmacy and meant their criteria for getting it for $35.

Awesome!

So you are from PA eh...

Xyrem costs 36k a year,No?

I strongly believe this is the best drug out there for related "symptoms"

If I had a pain pump, Xyrem and Adderal I believe ALL of my CFS /ME symptoms would be under ideal control

Only thing better would be the RIGHT Antibiotics,

 

[Misfit Toy]

@Tired of being sick -that's assuming that you don't have a lot of side effects from all of those meds. I could not take Xyrem. Made me sick.

 

[Tired of being sick]

@Tired of being sick -that's assuming that you don't have a lot of side effects from all of those meds. I could not take Xyrem. Made me sick.

Sorry to hear that,(sad)

Since you and I are almost exactly alike on all levels, physically, mentally and socially..

Our only difference is genitalia,Lol

I'm afraid I might have the same reaction to Xyrem as well........

 

[Misfit Toy]

I didn't mean to bring on a down thought, but I had to let people know. People on here think this drug is like a miracle drug and no one has really had access to it to know. It's so complicated and it comes with so many side effects and people that complain about it. It's not something to take lightly and you probably should have someone who lives with you while you take it.

Also, you are not allowed to be on Xyrem with narcotics or any pain pump. They told me straight up.....no narcotics, patches...nothing while on it because people have died from pain meds and Xyrem being taken together. They are 2 central nervous system depressants and it's too risky.

People just go by what they read and not what they "do." I know there is a lot about it regarding fibro and CFS, but it doesn't take into account the amount of sensitivities we have. If you are a sensitive person, this med is not for you.

Plus, I have major hypoglycemia....asking me not to eat for 3 hours and then take this med is pretty hard for me and then when you take it....it causes the munchies. People take it and get up to eat and then they throw up. JESUS.

 

[Tired of being sick]

Also, you are not allowed to be on Xyrem with narcotics or any pain pump. They told me straight up.....no narcotics, patches...nothing while on it because people have died from pain meds and Xyrem being taken together. They are 2 central nervous system depressants and it's too risky.

Every time I think I might be on the right track

BOOM!,here comes a Damn wrench in my spokes!

 

[Misfit Toy]

I feel the same way @Tired of being sick. It's unreal. While it helped with my pain, it made me feel nuts. I mean....can I get a break??? Every medicine has some serious drawback. Fentanyl helps my body pain, but brings on a migraine. Prednisone made me feel great, but it would kill my adrenals. The only word describing how I feel begins with an F.

 

[heapsreal]

Thanks for sharing your experience.

I guess it has an aura around it like its a miracle drug as its hard to get prescribed and alot of hype about it doing lots of great things. Sounds like the only real hype is the cost.

I remember it being sold in bodybuilding magazines in the 1980s where one could buy a bottle for $10 and it was in a pill form. I think it worked well for some but no real miracle.

I guess its one of those meds one has to try as its an individual thing in responses to it, like everything we try i guess.

Have u tried baclofen? its mentioned as being the poor mans xyrem, as it supposedly increases growth hormone etc but its actual effects sound very different to xyrem. I think they may share a common receptor, it does help improve sleep quality. It would be good to have your opinion on baclofen to compare to xyrem??

good luck.

 

[Misfit Toy]

@heapsreal , I looked Xyrem up on a fibro site. I was thinking everyone on there would love it but NOPE. Lots of anxiety reports along with vomiting on it. One woman on that site died from taking it. I know that's not common, but if you drink with it, or take an opiate with it...it's a possibility. I am surprised actually at how many don't like it, have gone off of it...or take other meds to counteract the side effects it causes. Many love it in beginning, but it turns on them and causes worse problems and they have a really hard time going off of it. One woman had to go to rehab. Interesting....because some can just quit it and be fine. Many crave it after going off it because they miss the sleep.

A common theme is after awhile, it doesn't work the same anymore. The sleep doesn't last as long on the same dose but you can't go up too much because one could stop breathing or have even more side effects. Many with fibro initially feel good in the beginning and then the pain comes back.

I have not tried baclofen. @minkeygirl said it's like being on speed. I am not wanting to feel like I am on speed! I need energy but normal energy. I will look into it, but if I makes me feel speedy which is the same thing as anxious.....ugh.

 

[minkeygirl]

@Misfit Toy, most people don't feel like they are on speed. I do and I have that response to a lot of things. I took Ambien and slept then the next day I was running around and speeding like an idiot. You just have to try it.

 

[minkeygirl]

@Misfit Toy Z drugs are Zmbien and Zopiclone which is sort of like Ambien in the UK and OZ. They are just as bad as Benzos to get off, sometimes harder so they're not something you want to use every day. I think Lunesta too. But they are for sleep not pain.

I learned from @heapsreal that the key is to alternate so you don't build tolerance or have dependency issues.

 

[Misfit Toy]

I used to sleep on Ambien. Lunesta never worked. Ambien worked some of the time.

 

[heapsreal]

I dont think any sleep med works continuously, as minkey has said, i alternate the crapper out of a few things which help me keep my med doses down and try to avoid any tolerance.
XYREM sounds like something to use once or twice a week maybe????

 

[Misfit Toy]

@heapsreal -I have been debating. Here's the thing....I took it Saturday night and I still feel anxious. Last night, the night after taking it...I could not sleep at all. I was wired all day yesterday except for in AM. If I take it...Jazz Pharm wants me to take 2.5 mg X 2. I would get not much sleep because each Mg is an hour of sleep. I would get 4 hours or 5 and then be awake.

I don't want to feel so anxious again. Right now, it's that time of the month, also contributing to anxiety.

I would have to wait until I am more stable and in a better place. I am not sure if trying it once or twice a week is a normal thing to do or how it could affect the brain. ????

I have Restoril, Klonopin, Valium, Ativan, Zanaflex, Benadryl.....all that I can try for sleep and alternate. I think I may have ambien somewhere......

I am just not too sure on how it would make me feel again and I could try it one more time. SCARED.

 

[minkeygirl]

@Misfit Toy I can't advise you about the Xyrem but what I can say is doctors and pharmacist may not understand how our brains function or don't function so using that, or anything a few times a week may not be THEIR protocol but that doesn't mean it won't work, IF you can tolerate it and that's up to you.

If you want to try it when you're not on your period, then do it and then if it works don't use it then.

@heapsreal advised I alternate between several things a night. Sleep initiators, sleep sustainers and I still wake up depending on what I take.

Last night I woke 3 or 4 times and each time I wake I take something else that is short acting to get me back to sleep for at least 3 more hours. I use stuff with short half life so I"m not drugged and I think I metabolize stuff fast.

The nights I take Halcion I only wake once but I only take that once a night every other day. I am looking into Serax which is another short acting benzo.

You just have to pick a night when you feel ok, can afford to feel like crap the next do and go for it. We all have done that. It's what we just have to do.

 

[john66]

Hi MT, I took it and I think it is the best sleep drug out there. Aside from the horribly disgusting salt overload, it works better than any other med. I got denied disalbility and it is $90.00 a month, which is just too much for me at this time.

Give it time, and dont panic. I was really freaked out for the first few days, then I got used to it. It is a pain to get it and going into the city for the appts along with the med, are just too expensive for me right now. I even lost wieght, with out trying. It boosts HGH

 

[minkeygirl]

@john66 I don't know how it works with Xyrem but many pharmaceutical companies have programs for people who can't afford meds. Depending on your income there could be various levels of copays if any. Have you looked into that?

 

[Misfit Toy]

@john66 -I had horrible anxiety on it from the med. Plus, I could not stop urinating. I was going every 2 minutes. I was told to take a smaller dose. The problem is...my doc knows nothing about this med so I am basically having to figure this out....solo and not sure of what I am doing.

 

[Misfit Toy]

@john66 I don't know how it works with Xyrem but many pharmaceutical companies have programs for people who can't afford meds. Depending on your income there could be various levels of copays if any. Have you looked into that?

Mink, the med is about $1,000 to $1,700 so I think that is his copay-possibly. It's so expensive. I applied for the assistance program and got it. $35.00.

 

[minkeygirl]

With some meds you can still get assistance even with insurance. Lyrica has a program where it's either a $25 a month copay or free.

Years ago I got name brand Klonopin free.