I honestly have no clue as to how long I will have to be on xyrem, but in my mind I’ll need to be on it until I can fully get deep sleep at night on a consistent basis of my own. I think my doctor’s mind the same thing would apply. Obviously though I am hoping that the xyrem is a temporary solution, and I’m not on it long term, but for now it is really helping me.
Of course you wouldn’t recommend just asking for the Xyrem right away, like you know something about it…
Best to probably go along with the study for a few weeks, try different things, prime the pump so to speak, maybe ask the doctor about it briefly “because you’ve heard of it.” 
just to feel him out. Go about it tactfully. Try a few other things, but then tell him you’ve read all about it, and think that maybe you’d really like to try it. And then work on it, and so on…
No??
Yea that’s basically it, but every doctor is different. First off, no sleep specialist is going to prescribe xyrem without you first having a sleep study done showing at the very least insomnia and probably lack of deep sleep. Even for how bad mine was I still had to go through a couple months of trying different stuff before he was willing to prescribe it for me. I had to go through gabapentin, which helped slightly and then ambien and a bunch of stimulant combos etc. I never took the stimulants because of how taxing and addicting they are to people, but most of the other sleep meds failed anyway. The bottom line is though some doctors are willing to prescribe it while others only will prescribe it for narcolepsy.
How is your progress going with xyrem?
Still black circles arround your eyes? 
Xyrem has been going great actually. I didn’t want to post updates everyday as to get redundant, but I know people are interested so I’ll do it as much as possible. Basically I’ve been on xyrem for a little over a week now, and a few major things have happened. First off, sexually things have turned around 180, and I’m not exagerating at all. A little over a week ago I had no ejaculate fluid coupled with weak ejaculate, diminished sex drive, dimished penile size, prostatits symptoms and just weak erections overall. In only a week that’s turned around big time. I get morning wood every morning now basically, the real strong kind, my penile size ejaculation strength and fluid has all come back full force, and my prostatits symptoms have all but disappeared. Also my testicles don;t seem swollen and dead anymore, they just feel like they are working again, and stimulation feels great again etc. I’m getting some pains from time to time in my left nut though why I have no clue. As said before sexually I wasn’t as bad as some guys on here, but i did have a good amount of ed from this stuff and things were getting worse and worse as time went on. In all honesty in only a week I feel sexually I’m 80% recovered no joke.
My bigger issue with all of this was how the shit affected me hormonally and neurologically etc with my sleep and chronic fatigue. Physically and mentally I still have a long way to go. Yes I still have dark circles under my eyes, and a cushingoid face along with fat deposits in my chest and hip area on my body etc. Energy wise though things are doing well. I have great energy throughout the day and no more bouts of fatigue where I literally couldnt function. overall my life is managable at this point which is great. I’m at my best now in the mornings, hell I can even exercise and run again which is great. Also, During the day my metabolism is way up, I don’t feel bloated, and I’ve started to drop a couple pounds as of late so hopefully more follow. The one thing is though I have been experiencing a crash at night. Whenever around 6PM rolls around the energy sort of dies off, and I get somewhat fatigued again, lose my appetite, etc. I think and this is me purely me hypothesizing, but from my months and months of sleep and hormonal trouble my cortisol is just out of whack and starts rising later in the day when it should be highest in the early morning. This would possibly explain a lot of the sleep problems along with the cushingoid symptoms some of us like me have. Anyway though, the crashes have been getting less intense as time goes on so I’m hoping everything eventually improves itself. Mentally like I said there still is a good amount of brain fog I’m dealing with, but actually I am starting to get brief moments of clarity where I feel totally like myself again. Just last night actually, I was talking to one of my buddies and was just really able to crack jokes and just be the quick witted asshole i used to be which felt great. Im hoping in time that will get better as well.
Overall, there still are things I need to get better and I have a long way to go. I still can’t do things like nap during the day which I know is a sign of raised cortisol etc. But xyrem has had a tremendous impact in only a short amount of time.
Hey bro I’m really happy that things are going so well for you, I’m thinking that there might be some things you could add to fine-tune your recovery method.
First and foremost, GHB is no walk in the park, I hope you are monitoring your dosages carefully and that you are in contact with your doctor. Last thing you need is to be addicted to this stuff, so I hope your doctor has taken this to mind and can help wean you off when the time comes.
For your cortisol problems, there are things that may help. Around the time that you “crash” you may want to consider taking some phosphatydenyl serine, primordial performance has a product called endoamp that contains this which might interest you. Siberian ginseng is also known to help with this sort of thing, and even paul waters who first mentioned GHB on this forum used it. Third on the list is the Reset AD product which was made to combat adrenal fatigue. Also taking ZMA (or the type I use called ZMK) before you go to bed might help you even further.
Congrats and good luck!
Thanks man. I never got around to really talking to you at all through all of this, but from what I understand you’re around my age and in college too etc. It’s gotta be tough to be robbed of the 4 years from this shit, i mean just this one year is tough enough for me. Anyway, yea basically my doctor is monitoring the dose, and they have someone from the xyrem program call you every 10 days or so to check in on you etc. I don’t feel as though I’m addicted to the stuff at all or will be in the future, but I do realize it must be respected. Anyway, I’ve tried taking some PS actually around the time of the crash and it seems to help a bit. I may try siberian ginseng. To be honest I’m a bit weary of using products such as reset ad just because I don’t know how much they will really help. I mean by all means it could, but I will have to look into more testimonials and such before I decide to buy it as none of these things are cheap, and I’ve gone through so much money through all of this already. I appreciate the advice though.
Anyway, a slight update on my situation. I’m having a bit of a setback the past couple days. Basically, I’ve been having some trouble with waking up from the first dose from this stuff and then having to take the 2nd and get back to sleep. It’s more or less a situation where my overall sleep is better, but I’m just not getting enough of it at all, and it’s catching up with my body a bit. For some reason the level of sleep I’m getting on the second dose is no where as deep as the first and thus I feel this has led to more fatigue and brain fog throughout the day. The fatigue isn’t as intense and all, but overall I just feel like I’m in a daze of sorts at times. I’m hoping that as time goes on and I find the two nightly doses that are ideal for me this will subside. Otherwise though, the good news is that sexually I continue to improve, and am even having more random erections throughout the day. I’ll continue to keep you guys updated on the situation.
I’m sorry if I missed you already explaining this in the thread, but do you think that maybe you should talk to your doctor about only taking one dose before you go to bed?
I mean you don’t exactly suffer from the average narcolepsy case, and I’m thinking maybe the interruption in sleep is counter-productive.
the way xyrem works is that it puts you into a deep sleep and has such a short half life that you wake up usually around 4 hours later, thus two doses nightly are usually needed. I have taken one and gone as long as 6 hours before waking up to take the next one though. Basically though it’s damn near impossible to get a full 8 hours sleep from one dose. I think it’s more of a sort give and take situation where I have to find the two best nightly doses that work for me. So for now it’s a trial and error process.
well i increased my dose to 3.75g last night and it actually seems to be working quite well. I find myself going back to sleep a lot quicker during the second dose and also getting better sleep etc. Two things though and I dont know whether to interupt this as good or bad. You know how I’ve and others on here have complained about being emotionally numb etc. Well guess what emotions are starting to come back, and while this may seem like a good thing in some ways there’s a lot of anger and sadness with it. As I said before I haven’t cried throughout all of this really there were times where I was close but I was numb I couldn’t cry or get angry etc. Well today I bawled my eyes out, no lie just broke down while i was going off at my parents (fyi who still don’t believe a lot of what i have to say even with all my medical proof). I know I sound like a nut job right now believe me I think I am myself, but with all the physical changes that have happened to me it’s just extremely hard to deal with. It’s like I’m getting a glimpse of what my life could be like perfectly healthy again yet it’s still far away.
Oh and in other news, I wasn’t an idiot when I started this whole xyrem thing, I got blood work doen literally the day before I started it. Guess what high normal progesterone, low testosterone, low DHT, high normal cortisol (which I think the blood testing is extremely inaccurate for), and high normal antibodies to candida. I don’t know but as I said in my blood work post if I can fully recover with xyrem perhaps it can convince other doctors to try and use it to help you guys out there etc.
Yeah I know the feeling with parents not believing you. Although I have bloodwork to prove things are not right, my doc told my father that as there are other similar cases as mine, he believes fin is behind this (duh!), my mother blames ME for this and guess why? Because when I went to the gym I used protein powder for increasing protein intake, she is determined that there were some kind of hormones mixed in that powder (which I bought from a local food chain). It just makes you feel bad when you know others have had similar problems with this drug and already feel suicidally depressed with these physical things going on and then to be blamed for this whole mess is just something…
Hang in there, we’ll get through this.
ithappens, it’s great to hear your emotions are returning… nice to hear you’re feeling better with this xyrem treatment.
On the subject of parents and others not understanding/believing the problem, I know I’m in a similar boat. Mine seem to believe that just because I can go out with a friend (who understands me a bit better), that I must be relatively alright, and am bringing this on myself. I luckily have an appointment soon so once I have my hormones examined, I’m sure things will be easier to understand.
There’s certainly something to be said about a drug which can inhibit the function of the amygdala, unintentionally.
moved up to the highest dose of 4.5g 2x a night, and i think i found my sweet spot. it knocked me on my ass within about a half hour to the point where i couldnt even move which was kinda scary, but at least i know it’s working. woke up in around 6 hours and took the second dose and no problems this time, right back to sleep. felt great this morning still brain fog, but there’s brief moments where some clarity comes back. I find if i struggle getting to sleep with the second dose im in a bit of a fog and tired the next day. I also have been trying to exercise, but taking it easy in the process just doing some jogging every other day. Being an athlete all of my life i’m so used to exercising intensely that it’s a bit hard to adjust to this, beacause i just want to get out there and go out all again, but its gonna be a long process and all. great news though is after my run this morning i feel great. im more energized and all it’s unreal. i swear from where i was a 3-4 weeks ago to now is amazing to me. I honestly as im typing this feel amazing, this is far and away the best day i’ve had in a year and there’s definetly light at the end of the tunnel. more good news is i stepped on the scale today and i’m down 10lbs. in less than a month i’ve gone from a little over 170lbs(twenty pounds over my weight before fin) to a little over 160lbs, no joke. I still have a lot of fat where there should be lean muscle etc, but im hoping in time that will improve as well.
hey. how are you now?
Curious to know.
i’m doing ok actually. I’ve been able to stay in school and take two classes and finish up during the summer etc. Energy level is good during the day, but I still can’t go to sleep on my own for the life of me. Xyrem really has been helping, but i’ve been doing some other things to fine tune everything like eatting a good diet, and and taking a lot of vitamins and digestive enzymes etc. I also have been taking nystatin but im stopping for now because i want to wait till i have a pro-biotic before i takie it. I tried the hydrocortisone I had laying around the other day and got some interesting results. the brain fog really cleared up and I felt great for about 5 hours. Unfortunately after that I was hit with a fatigue spell so I’ve held off on it for awhile. I have been experimenting with progesterone cream 5mg daily but im not sure if its doing anything. other than that physically i still have a lot of symptoms my eyes are sunken in body is a mess etc etc, but i would say my face is looking slightly better. either way i want to start trying to sleep on my own at night, but it’s gonna be a work in progress so i’ll let everyone know how it goes and all. Im just glad right now that i dont feel like i’m dieing anymore, but I still got a long way to go. oh and sexually things are getting better i am fully confident i could have sex again and perform decently no problem.
Hey Guys,
I wanted to add my 2 cents in on this thread. First of all, I am a big advocate of xyrem to help with this syndrome. A couple of weeks ago, I did in fact obtain a prescription for Xyrem after a sleep study and hunting around for a doctor who was open to it. Unfortunately, I’m experiencing pretty terrible and rare side effects from the drug. I’ve taken it for 4 nights, and I’ve had head pain, tinnitus, anxiety, depression (the previous anxiety and depression were in check before this), tooth pain, muscle spasms, nausea, and generally terrible feelings (something happened on separate nights, that felt like a brief, albeit one second long, seizure…). Believe me, nobody wants to stick this out more than me, but I don’t think this medication works for me. I could definitely handle some of this stuff for a bit… but, I really don’t feel like I’m responding properly, and have decided to stop. I DEFINITELY don’t want this post to deter any of you from trying to obtain a Xyrem prescription, I just wanted to share my experience. Now that this isn’t looking like an option for me, I am moving forward to other treatments.
If you want to try to get a prescription for Xyrem, I would recommend a clinic in Cincinnati called “Tri State Sleep Disorders Clinic” (tristatesleep.com) They participated in the Fibromyalgia study with Xyrem, and the two lead doctors there, who are very very qualified (Berkowitz esp) have been studying GHB since the 1980’s. I didn’t do my sleep study there, but that’s where I went with my sleep study and obtained a prescription. So, if you’ve done a sleep study and been told Xyrem is not an option, consider going there (or you can get one done there). I had to travel to get there…
Ithappens is doing great on this and I think it is a GREAT GREAT way to get better from ALL of this shit IF the drug agrees with you. I am definitely in the minority according to the nurse that I spoke to.
Anyway, now I move forward! The things I see being very important in light of not being able to shut down my body artificially are…
- Progesterone Cream along with proper amino acid supplementation (i.e. Edge Effect)… This could take a while. I would hope the progesterone cream could help with the sleep/adrenal issue, as sleep is a necessity.
- Adrenal/Pituitary/Hypothalamus/Thyroid/Gonad Glandulars (Standard Process is a must) in proper ratio.
- A proper diet that avoids food allergies/sugar etc (obvious).
- Major major detoxing/parasite/fungi control. This has to be treated similarly to Chronic Fatigue Syndrome… Enemas… Liver Flushes… All should be considered. Talk to a good Naturopath (MD’s don’t understand this… Shippen acts like a Naturopath with me, prescribing weird little mineral supplements like cobalt and stuff) and get a stool sample done.
- Growth Hormone shots may be helpful… not sure… GH definitely has something to do with 5AR (hence necessity for sleep)
- Cortisol lowering adaptigens… Thinking of trying PS 100 cream… but it’s from soy which I feel should be avoided (at least by me).
- Emotional work. There are a lot of different techniques out there that work on subconscious belief systems. The subconscious is 10 times more powerful than your conscious mind and has more control over your physical system than your conscious mind. It sounds a little nuts but I’ve been doing a technique called Theta Healing that has been really really helpful for me. I’m able to talk my way out of anything, so psychotherapy doesn’t work and is very boring, whereas Theta Healing is more direct and you are more clearly accomplishing something (it uses subconscious muscle responses to gauge your subconscious belief patterns… ). AFT, EFT… Some others to consider.
- Acupuncture/Chinese Medicine… Very helpful adjunct therapy.
So, now that I’m not going to do Xyrem, I’m on a different path. I wish everyone well with this. Today I called the FDA and Merck to discuss this situation and they were pretty alarmed and had never heard of this. It’s our obligation to get this information out there more (I know many of you have tried…). It really bothers me to see new people registered everyday on this forum. If this has been going on since the inception of this drug as a hairloss medication… Well, that’s injustice that at least the prescribing information remains untouched. Anybody with the predisposition is going to be slammed by this medication, as we all were. We all have to make sure to file reports with the FDA and follow up on them.
In health.
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quick update to everyone. i think i reached a point with xyrem where im starting to actually not need it. basically, xyrem was great for taking me out of the fight flight mode, no more chronic fatigue, no more racing thoughts, better sexually etc etc. Anyway, what was killing me with it was the fact that i had to wake up every 4 hours or so and take it again and there were days where i was only getting around 4-6 hours of sleep, granted it was deep though, where i started to feel out of it and tired etc. So I started to simply wean myself off of it and so far i’ve been able to fall asleep and stay asleep on my own the past two nights. I still have trouble falling asleep at a decent hour say before 1AM, but the sleep I’m getting is no longer horrible and is deep and refreshing again. Better yet, after the past two nights of sleeping on my own, I managed to sleep for a straight 8 hours and not wake up at all. Also, my facial features are starting to improve. Literally after only two days of sleeping on my own my skin has softened back up, my face isnt as run down looking, and overall im starting to look more and more like myself except it is still a slow process with a long way to go. Sexually, I can perform no problem, and a lot has improved in terms of size etc. my libido is still somewhat shakey as in im not that horny really, but i think in time that may return. either way though things are progressing well all be it slowly. oh and also i still plan on taking xyrem, but perhaps not every night now.
quick update. i’m starting to get a good amount of sex drive back and things continue to slowly improve as they have been. I feel more connected with the world again etc. Anyway, just a side note thats strange because i know that a lot of guys such as myself had problems with digestion and bloating so this may sound interesting when I say that I’m at a point now where my metabolism is through the roof. I’m seriously hungry all the time, and there’s no bloating at all. more so whatever i eat just seems to go right through me, and the thing is even when I was healthy doing soccer in top shape I don’t remember my digestion/metabolism being this fast. could it possibly be surging testosterone levels? I’ve noticed as my sex drive continues coming back my metabolism has increased and keeps getting faster.
well, I daresay any other approach to curing our issues would not see as much success as you have seen with xyrem. I reckon this strongly implies that Propecia interfered and imbalanced your mental function, lasting long after quittng. Also, if its restoring your sexual function and other sexual issues, perhaps this may be one of the primary reasons for our sexual dysfunction post-finasteride.
what do you think ithappens?
HELLO EVERYBODY,I’M WRITING FROM ITALY… SAME PROBLEMS OF U ALL… 1 YEAR & 6 MOUTH ON PROPECIA… I QUIT 2 YEARS AGO BUT STILL HAVE LIBIDO AND FATIQUE ISSUES.
I’M FOLLOWING ITHAPPENS’S PROGRESSES AND I’M INTERESTED TAKING GHB.I’VE NEVER AKE NOTHING,JUST SOME TESTOGEL FOR 3 MOUTH BUT IT DIDN’T CHANGE MY PROBLEMS.
ITHAPPENS,WOULD U RACCOMEND GHB TO ME AND PEOPLE LIKE US? I’M REALLY AFRAID…
AND DO U THINK I WOULD GET A SLEEP TEST TO GET GHB? DID U TALK ABOUT PROPECIA TO GET IT?
I HOPE U’LL GO BACK TO NORMAL,I REALLY HOPE.
THANK YOU EVRYONE FOR THIS FORUM,U GIVE ME HOPE.
BYE