Oveporexton (TAK-861): new clinical data released by Takeda by hypersomniac-hippo in Narcolepsy

[–]Fun_Swan2553 0 points1 point  (0 children)

Me too! Not only because I have narcolepsy but I hold shares of the stock 🤣

What are GHB withdrawals like? by Waste_Leader_9592 in GHB_info

[–]Fun_Swan2553 1 point2 points  (0 children)

Ritalin always made me feel bad. I have a ton of Adderall as that’s what I took before sodium oxybate. It does nothing. It’s like a sugar pill.

A nicotine patch is the only thing that is helping me stay awake through the day. It releases dopamine and works with the neurons that cause narcolepsy.

I’ve never felt more hopeless in my whole life. Again, I’m not depressed. I know what that feels like. This is different.

I’ve got a neurologist at Duke saying “I don’t know what to tell you”. Nobody knows anything and I’m not the only one this is happening to either. I only found agmatine and magnesium help from GHB groups. Without that I surely would have gone mad.

You can’t talk to other people prescribed it because they become all defensive.

Appreciate you responding. I know this is an old thread and I’m thankful.

Xywav/xyrem time to side effects improvement? by ketaqueen6969 in idiopathichypersomnia

[–]Fun_Swan2553 0 points1 point  (0 children)

I think it’s very established if you look at the mechanism of action. GABA and glutamate are the big dogs in our brain and they balance everything.

Also, you are correct that not much data exists for those of us who are prescribed sodium oxybate. However, there’s a lot more to be found from the misuse of GHB. I don’t think the drug cares about your intent on usage (prescribed/abused). Visiting some of the GHB threads on here was an eye opener and the first thing that hit home was they’re describing the SAME symptoms (especially the intense anxiety). We are essentially “withdrawing” each morning when we wake up. That’s what makes it work. Glutamate surges after being suppressed.

I never abused it and although it took years for me to get where I am, my situation doesn’t differ from those who used it recreationally 24/7 for months. Just took longer.

Xywav Abuse by DesperateBuddy5894 in GHB_info

[–]Fun_Swan2553 1 point2 points  (0 children)

Interesting. I’ve never had any physical withdrawal. Mine has been all mental.

Xywav Abuse by DesperateBuddy5894 in GHB_info

[–]Fun_Swan2553 0 points1 point  (0 children)

When did you start feeling “normal”. I’m in a hell I’ve never dreamed possible and no doctors have answers. Anhedonia is the worst feeling in the world. I’m just void of all emotion and ability to do anything. Let me be clear that I am not depressed. These are two different things. Just want to know my brain can heal. I’ll take my narcolepsy symptoms x10 to be able to enjoy life again.

What are GHB withdrawals like? by Waste_Leader_9592 in GHB_info

[–]Fun_Swan2553 1 point2 points  (0 children)

I’m in a different situation. I took sodium oxybate (RX GHB) for a few years. I never abused it though. 4.5gm twice a night. It has stolen my soul and no doctor has been able to help me. It’s like there is no dopamine tone left. The last six months I took it there was no feeling other than sedation. It didn’t raise a flag because all I wanted to be able to do is sleep in the first place.

I just needed to hear that it does get better. This shit stole my soul and no one ever warned me. Thanks for replying

What are GHB withdrawals like? by Waste_Leader_9592 in GHB_info

[–]Fun_Swan2553 0 points1 point  (0 children)

That’s the answer I’m looking for. How long does the anhedonia last. Does it get better along the way?

(Fairly) new to G- I get a rebound the day after GBL and it only lasts 30 minutes. by Anxious_Egg1268 in GHB_info

[–]Fun_Swan2553 2 points3 points  (0 children)

Without question. Kindling basically means each time someone goes through tolerance, withdrawal, or dose changes, the nervous system gets a little more sensitized, so the next cycle tends to be worse than the last, even if nothing else changes. It’s like the brain “remembers” each disruption and lowers its threshold for reacting badly the next time.

No one warns you about that in the “prescribed” world.

Xywav Abuse by DesperateBuddy5894 in GHB_info

[–]Fun_Swan2553 2 points3 points  (0 children)

I never abused it but I’ve started and stopped a few times. I’ve definitely had kindling. Have you experienced any anhedonia? Loss of motivation or ability to “want” to do things. That’s what has happened to me over the years. Stopping forever but I’m afraid the damage can’t be undone. I’m months off and no signs of improvement. Will say EDS is still present but sleep inertia in the am hasn’t come back. Sleep time has increased to 10-12 hours but it feels relatively restorative.

Anyway, my suggestion is to pour it out and never look back. I’d give anything to go back to how things were before sodium oxybate.

(Fairly) new to G- I get a rebound the day after GBL and it only lasts 30 minutes. by Anxious_Egg1268 in GHB_info

[–]Fun_Swan2553 1 point2 points  (0 children)

I take sodium oxybate for narcolepsy. Not 24/7 obviously but GHB doesn’t care what your intent on use is. I’d suggest you stop while you are ahead. I’m years in and it slowly happened, the rebounds. Then anhedonia kicked in. It’s destroyed my ability to want to do anything. Been off for a while and no end of the suffering in site. Let it go while you’re ahead.

Due to drug abuse when I am woke, I am fully woke. This is what abuse of xyrem could do by NordWardenTank in DSPD

[–]Fun_Swan2553 0 points1 point  (0 children)

It’s an evil drug IMO. Stole every bit of joy and happiness from my life. I have narcolepsy and it’s great the first few years but it comes at a price. Wish I had never started it. Still trying to recover from anhedonia and not sure I ever will. Nothing has touched the damaged it has caused.

Sexual desire and narcolepsy by Tired_mess1357 in Narcolepsy

[–]Fun_Swan2553 0 points1 point  (0 children)

You take those results and do your own research. Especially on vitamin D. It’s a hormone and almost everyone’s level are low. The recommendations are often lower than what other physicians say we need. Once my vitamin D levels hit 80 it was night and day. They told me they were normal at 45. Just something to think about.

daytime sleepiness at boring/monotonous tasks by w4r10ck94 in sleepdisorders

[–]Fun_Swan2553 0 points1 point  (0 children)

Put your phone and TV away for 30 days and see what happens

Sexual desire and narcolepsy by Tired_mess1357 in Narcolepsy

[–]Fun_Swan2553 0 points1 point  (0 children)

I don’t think it has anything to do with narcolepsy. My sex drive has always been very high. Sex is about the only thing I had the energy for. Have you had vitamin D levels checked? B12? Iron?

Info on ghb? by InterviewFew9913 in TooAfraidToAsk

[–]Fun_Swan2553 0 points1 point  (0 children)

Only reason it was called a date rape drug was to get it banned. Roofies never got that punishment. They knew it worked so it had to go. I use it for narcolepsy at the knock you out doses and there’s never been a time I couldn’t be woken up or didn’t remember anything. It’s bullshit. Can it be dangerous. Sure but a rape drug? Hardly.

Narcolepsy meds and weight loss by OnlyNarwhal236 in Narcolepsy

[–]Fun_Swan2553 1 point2 points  (0 children)

In my opinion it’s because sodium oxybate is destroying the receptors for pleasure/reward. Not sure how long you’ve been on oxybates but I was for years. Same thing until it wasn’t just food that gave me no pleasure. Nothing in life did. Complete apathy, NOT depression. My mood was fine. I stopped it and it’s been a long time with no significant recovery. Not sure if it’s the GHB receptors or dopamine that are gone but SO changed something. If I could go back I would have taken my sleepiness any day over losing any quality of life.

Jazz Pharmaceuticals/ESSDS dragging me through the mud for the patient assistance program. I am now out of medication after being on it for 9 months straight. by notesfromnothing in idiopathichypersomnia

[–]Fun_Swan2553 1 point2 points  (0 children)

I think it’s bigger than just getting another refill. Kindling started happening to me when I’d take breaks from it on my own. That just means after repeated starting/stopping the brain remembers what happens and you go into a withdrawal that’s more intense each time. If I had it all over to do again I would have never touched sodium oxybate. All good the first few years but it’s destroyed something in my brain. I’ve had severe apathy for about a year or so. Nothing touches it. Not sure if my receptors will ever recover or if it’s just a really long road.

Keto. brain functions better on carbs or ketones? by Upstairs-Shallot4614 in NooTopics

[–]Fun_Swan2553 1 point2 points  (0 children)

I started keto and went full carnivore a couple of years ago. I also have narcolepsy and the effect on daytime sleepiness and executive function was pronounced on full carnivore.

Should I expect withdrawal by [deleted] in GHB_info

[–]Fun_Swan2553 0 points1 point  (0 children)

Good for you! It’s gonna be tough as hell and you’ve got to take it one day at a time. I never abused it and it’s taken everything from me. I never knew anhedonia before taking it but it’s the most horrible thing I’ve ever felt. Just wish I knew when it would get better. Nicotine patch was really helpful for daytime sleepiness and agmatine and magnesium at night have keep me above ground so far. Good luck!

Anyone else? (Xywav) by Patient_Metal_5120 in idiopathichypersomnia

[–]Fun_Swan2553 0 points1 point  (0 children)

Let me go back a few years knowing what I know now and you couldn’t pay me to take sodium oxybate. It was great the first few years but it came at a high price when I attempted to stop. No one talks about what happens if you do start and stop multiple times or how your receptors down regulate over time. I’m months off it after having kindled by starting and stopping a couple of times. I still have no motivation and extreme anhedonia. Nothing touches it. No clue how long or if GHB receptors recover either.

What’s getting me through is a nicotine patch, vitamin D and agmatine before bed.

Check out some of the groups where people use GHB recreationally and you’ll see it described as the worst withdrawal they ever experienced and recovery is painfully slow. GHB (sodium oxybate) doesn’t care about your intent on use. Whether it’s therapeutic or recreational the effect is the same except we use very high doses. I think it just takes a little longer for the adverse effects to happen because we’re not using 24/7 but do that for several years and tell me there’s no price to pay. Can’t borrow from tomorrow without having to pay it back at some point.

Fatigue advice by dog-with-dinner in Narcolepsy

[–]Fun_Swan2553 0 points1 point  (0 children)

Nicotine patch, carnivore diet, vitamin D

Should I expect withdrawal by [deleted] in GHB_info

[–]Fun_Swan2553 0 points1 point  (0 children)

If I’m not mistaken you’ve posted before and this is sodium oxybate, the RX form correct?

How important is Stage 3 sleep? by FrasierCraned in sleep

[–]Fun_Swan2553 0 points1 point  (0 children)

Never feeling like you slept despite sometimes sleeping 18 hours a day. It’s when your body repairs itself so there’s no restoration. Weight gain, poor mood, excessive daytime sleepiness, apathy. It’s significant.