22 yearsold chronic fatigue/hormonal/sleeping disorder posted awhile back
- 03-08-2008, 05:04 PM
22 yearsold chronic fatigue/hormonal/sleeping disorder posted awhile back
Basically I have had a sleep disorder/chronic fatigue syndrome and have watched my life go to hell over the past year. I used to play division 1 soccer and have a very athletic build lots of energy etc, I had a bad reaction to a couple of rx medications last april and it messed me bad. Anyway, I know my adrenals are shot probably etc, and I wasnt getting deep sleep so my neuro just rxed me xyrem. anyway, i've known for awhile that ghb could be very beneficial in terms of the deep sleep and GH release it provides etc, but obviously i couldnt find it anywhere. The thing is while I think xyrem could help and will give it a try it does seem from everything that I looked into that it is much much weaker than real ghb so I'm assuming the gh release and other effects are all probably weaker. Could any clarify this for me? anyway i'll keep everyone updated on how it's going and all.
- 03-08-2008, 05:26 PM
Xyrem is pharmaceutical grade NaGHB. Please let me know how it works for you as I also have fibromyalgia and have been given the option of taking this med and I am going to do so. I've taken many other things for sleep, but Xyrem is in a class of its own for the type of sleep disorder you and I have and is already in phase III clinical trials for fibromyalgia. I believe the HPA axis disruption that is common in these fatigue and pain disorders is initiated by the lack of deep sleep that results in- and from pain as well as many the other myriad of anomalies. It's a vicious cycle that is hard to break with other meds, if not impossible.
Xyrem is already being used extensively by Narcoleptics, and for many it has been a life-saver. Because of its strict status with the FDA/DEA however, it is an orphan drug that many whose life depend on it (including you and I) would rather the general public not know about it; otherwise drug-seekers might try to get it prescribed, not for a legitimate sleep disorder, but for the recreational use that led to its restricted use in the first place.
You definitely want to get a handle on this disorder now before the rest of your life passes by. I am curious, what meds were you on that caused this?
- 03-08-2008, 06:23 PM
I was on accutane back in august of 2006 and that worked fairly well with few side effects throughout except extensive hair loss. Besides that I felt fine though and was perfectly healthy. Unfortunately, I tried propecia a few months after in april and it really messed me up. Only three weeks on the stuff and my sleep went to hell and my life has been turned upside down ever since. Funny you mention Fibro. It's not like i have searing pains throughout my body, but I have these chronic fatigue pains and lags that is very physical. I think that's the thing I've been stressing to every doctor that this isn't depression because I'm literally physically tired 24/7. Yea It just keeps getting worse as time goes on. I'll keep you updated, but from what i understand Xyrem is a very toned down version of GHB, real pure GHB may work much better, but thats just from my opinion and personal observation. But hey I guess I have to thank the FDA that the stuff costs 500 bucks a month and I'll have to pay 100 with my insurance etc. I could actually save money buying it in off the streets in the long run, probably would work better too. Too bad the stuff literally doesnt exist here anymore. I have more of a chance of finding heroin i think.
03-08-2008, 07:34 PM
Yeah, I read your other thread after finding this one. It was exactly how my affliction started in terms of your symptoms and how you described them, literally to the letter...... I was only 16 years old at the time and I had pulled my back muscles really bad lifting weights incorrectly and that evening my back was really stiff and beyond painful. I went to bed that night, and woke up the next morning exactly how you described.... and I was never the same again. The symptoms progressed into full-blown fibromyalgia. And like you, I had no idea what was happening to me. My friends even noticed something had changed about me. I remember the first time I tried to exercise or play basketball, etc., after the onset of this illness....I literally had the strength, energy, and stamina of a 90-year old, not to mention I would pull a muscle or muscles easily, and I was stiff and sore as hell all over my body afterwards.
I also went through the revolving door of doctors but at the time there was little known about fibromyalgia nor its treatment. I was put on a low-dose tricyclic antidepressant for sleep and that was pretty much it for years. It allowed me to somewhat pose as a human being and simulate a life but other than that it offered nothing in terms of a cure or remission.
GHB has been banned since about 1990, but precursors to it were widely available through the 1990's as OTC sleep aids until they were banned. Some of the precursors are still around because they are used as industrial solvents, and that is what is likely to be found on the streets unless someone with knowledge of chemistry converts it. Recreational users have said the precursors have stronger effects, but that is neither here nor there for why you need it. It's just too bad I never knew about it back then because I would have likely tried it for my sleep disorder. It's a shame an $8 bottle of OTC GHB is now $500. But I am still thankful it is even available as a prescription, because it really has helped people with
How did you end up seeing a neurologist for this disorder?
03-09-2008, 08:11 AM
I was seeing a ton of endocrinologists for the whole figuring it was all down to some hormonal imbalance, but yea my sleep was what onset the whole thing. Anyway. I finally had endo that sent me to a neuro for the issue, and my sleep study revealed what I already knew that I wasn't getting any stage 3 or 4 sleep, none what so ever. Also my whole pattern of entering and leaving REM was off so the stuff really messed up my brain chemistry no doubt. I knew xyrem was the best drug out there to improve deep sleep so i suggested that right away, but the guy wanted me to try a bunch of other stuff first to cover his ass for insurance purposes etc. What it comes down to is I haven't really slept in a whole year, and I've watched my body break down mentally, but more so physically because of it. Some people go through this for years so the only thing I'm hoping for is that I caught this early enough to hopefully recover from it one day. From what I know about xyrem it's sodium oxybate which isn't GHB, it is but it isn't real GHB that they used to sell. It's the salt crystals of GHB basically, and from what I understand it's far less powerful, but in turn has less side effects etc, whether it works as well is the main issue. I've been looking for this stuff for a year, and have had no luck. I know GBL is still very much legal in europe and thought about ordering it a few times, but the last thing I need right now are the feds tearing my door. As for the xyrem though hopefully I will have it by next week sometime, but there is a whole bunch of red tape that I have to go through I'm sure so we'll see.
03-10-2008, 07:01 PM
I know what you mean by breaking down emotionally. I was so tired at the onset because I was still fully immersed in all the activities that I had enjoyed or otherwise endured easily (like a job) before the onset. The only thing that helped me survive was that I was able to perform many previously learned tasks on autopilot and in a sense bypass the inability to concentrate. I remember at the time right when my adrenals kicked in at full output to try and compensate, as I always felt wired but tired, literally like I was hitting the brakes and the gas pedal at the same time. That worked for about 3 years until I finally just collapsed into what I can only describe as a mental breakdown. Unlike you however, no one suggested a sleep study for me. I had just about every other in-depth physical and lab test completed, but no suggestion whatsoever that my sleep might be disturbed.
When are you expected to receive your shipment of Xyrem?
03-10-2008, 11:12 PM
I talke to the people who distribute it over the phone today, and gave them all of my insurance information. Basically, I'm assigned a personal representitive for the stuff who will contact my insurance company, and then contact me with what they're willing to cover within 48 hours. My insurance plan should leave me with a copay no higher than 100 bucks for it so I should be able to afford it. After paying for the stuff they send you a ton of information on it that you have to read through. Then within another day or two after that they call you to verify you have gone through the material and understand all you need to know about the drug. After that the drug is finally shipped out to you. In a perfect world the stuff would be here by this friday or saturday. However, obviously that probably won't happen so probably sometime in a couple weeks.
As for getting a sleep study yea I would highly suggest it. I mean since all my problems started I have saying, "this all started with my sleep and it's going to end with my sleep". People with fibro lack deep stage 3 and 4 sleep hence why xyrem is being used to treat it, and why so many other conditions overlap with it. Also, the whole ordeal about your adrenals giving out, feeling like you're going with the brakes and gas on at the same time, and doing your normal tasks until you collapsed all perfectly relate to what im going through and my experience thus far. When this all first happened I was still able to push myself through and get by with soccer, school, life in general etc. However, as time has gone on over the past year it got tougher and tougher to the point where my body is just about breaking down. It seriously feels as if I'm literally about to die at times, and if you try to explain it to someone who has never gone through it it's almost impossible. I'm hoping that the xyrem is able to turn things around with deep sleep etc and none of the mental and physical effects are permanent, but we'll see.
03-12-2008, 12:20 AM
So are you excited about starting it? I am a little apprehensive because so much of my faith is being put into it as a successful medicine. Plus, all the hype that surrounded its banning.
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