Xyrem/GHB

[Misfit Toy]

@minkeygirl I meant to tell you....yes, I did try Lyrica and I could not talk on it....or sleep. I felt doped. Same thing with neurontin. Neurontin made me very very depressed and I had to stop it because I started contemplating suicide all of the time.

 

[minkeygirl]

@Misfit Toy And that explains how we have to try things. I like 50 mgs of Lyrica to get me past a bad mood but if I took it all the time I'd weigh 300 pounds. (I haven't stopped eating today) Same with Neurontin. I took 3200 mgs in 98. It really helped for awhile until I started hallucinating and gained 60 lbs.

The moral is you have to try stuff and figure it out for yourself.

 

[Gingergrrl]

@Misfit Toy I am sorry to hear about your nightmare experience with Xyrem. I have never taken it but have some familiarity with it from my old job (before I was disabled by CFS.)

I worked with a patient with true narcolepsy/cataplexy and this was a great med for him. In other patients w/pain, insomnia, depression, etc, but not narcolepsy this med ultimately had too many side effects or difficulties and most had to stop. Granted they did not have CFS so that adds another whole dimension.

 

[Misfit Toy]

Agreed. I am finding that, too. Even those with narcolepsy have problems. I read this website about fibro. This doc offers it. He says...."all the meds I prescribe...except Xyrem, are low in side effects." I thought that was kind of funny and right on!

 

[Tired of being sick]

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.

Have you had your endocrine system tested?

especially the pituitary gland?

I am beginning to think proper sleep will not help GHD...

Our immune system loves to attack our own tissue,glands,lymph nodes,organs,bones,CNS,ETC.......

 

[Tired of being sick]

@Misfit Toy

Ya know, when I 1st saw your avatar/name..
I had an instant chuckle.......

It brought a vivid memory back to me..

It was in 1992 when I was working but late everyday and absent at least 3 days per month..
Boss/owner would not fire me no matter what because he was intelligent enough to recognize
I had health issues.."more so than I had recognized myself at the time"

So you can just imagine how I was alienated by fellow employees

I can remember how I would let them believe that I was doing it on purpose just to piss them off even further..

And at the Christmas party of 92..

I distinctively said,I am from the land of misfits and Santa better pick my ass up this year!!

 

[Misfit Toy]

@Tired of being sick -yes, I feel as though I am from the land of misfit toys! Many of us may feel that way.

So, I had pituitary testing years ago. Not recently. I don't want to go back to an endocrinologist. I've had the worst luck with them. They are not into CFS.

I am in perimenopause. I had PCOS. I know my HPA axis is off....most with CFS are.

I have idiopathic CD4 lymphopenia. And CVID...too major immune disorders. Low IgA....Celiac. My immune system is not working right at all.

Ps) you had a nice boss!

 

[john66]

I dont want to sound like Xyrem, was a god send for me, I would say it was the best of the worst. For me the worst part of it was the salty taste. I was up to the max dose 4.5 gm x2 per night and I think that amount of salt will make you urinate or vomit as well as cause anxiety. It did all three to me, but sleeping vs no sleep is a difficult call. I also tried Seroquel (sugar cravings and massive weight gain), Ambien (only kept me asleep for 2 hrs, the reload), valium (doesnt initiate sleep), remeron (sugar cravings, weight gain), Doxepin (hallucinations, sugar cravings , weight gain). All of the above mixed with Valerian, Melatonin, GABA, praying, begging etc.

 

[Misfit Toy]

Yes, I peed incessantly, had zero appetite and felt nuts and had horrible sweating, which is also a huge side effect. Good times!