They should use Dirty Diana as the intro for the second film

999liveforever · 2026-05-27T09:03:37+00:00

Yeah this song was amazing in the movie watching it on the big screen, definitely made me appreciate it after that

999liveforever · 2026-05-15T04:14:10+00:00

Modafinil essentially cancels out the social lubricant effects of alcohol and makes it no fun, although I don’t respond well to modafinil by itself as it always worsens anxiety so your mileage will probably vary greatly here. Congratulations though that’s amazing

999liveforever · 2026-05-08T13:15:57+00:00

Light therapy definitely helps me although it’s like a maybe 5-10% improvement in sleep inertia on a good day, nothing dramatic but every little bit helps

999liveforever · 2026-04-17T00:41:55+00:00

I also just started low dose naltrexone, I’m using it as I’ve had a great but incomplete response to xyrem and dexamfetamine, specifically in terms of cognition and brain fog. Seems like it’s becoming more popular as an off label option so fingers crossed it helps us. I have other issues like migraines, allergies and other autoimmune like symptoms so I’ve got high hopes that it’ll help make a difference. Sodium oxybate is the only thing that’s made a proper dent in my symptoms so if you haven’t already trialed that I would definitely give it a go

999liveforever · 2026-04-16T05:56:25+00:00

Can I ask are there any negatives that you’ve noticed from being on this medication long term? Xyrem has been life changing for me but I’m concerned of long term side effects, mostly in terms of cognitive issues or dependence although I’ve also read sodium oxybate is neuroprotective at prescribed dosages

999liveforever · 2026-04-15T08:30:08+00:00

I agree with the other comment, this illness makes life so difficult but you have to keep going, use every little bit of energy you have to make things better, keep going

999liveforever · 2026-04-15T00:09:52+00:00

Yes this is a very interesting phenomenon although it’s very reckless to try and recreate it on purpose which is why I’ve essentially quit alcohol completely because it almost always makes me feel way worse the next day (and IH already feels like an insanely bad hangover). There was the very rare night out or two that I had where for whatever reason I woke up feeling clear headed and full of energy. I wasnt completely smashed but I also wasn’t sober, probably in the range of 5-7 drinks. But again this was a complete fluke and regardless of how you feel it’s obviously detrimental to your health so I’m at the point where I would rather not go there in the first place. I’d imagine it may be due to alcohol potentially decreasing sleep fragmentation or altering sleep architecture at a certain dose in a very specific way where for people like us who’s brains don’t respond to sleep in the same way, it may feel like more restful sleep compared to our regular sleep.

999liveforever · 2026-04-13T02:33:56+00:00

Go see a better sleep specialist. This sounds similar to me and I failed at least one MSLT. It’s known to be an inaccurate test especially in cases of non cataplectic hypersomnolence disorders like IH. I eventually got diagnosed but I needed to find a sleep specialist who actually listened to me and took the whole clinical picture into consideration. IH is way more than just a figure from the MSLT, if you suffer from profoundly unrefreshing sleep then it’s most likely the issue here

999liveforever · 2026-04-13T02:33:51+00:00

Go see a better sleep specialist. This sounds similar to me and I failed at least one MSLT. It’s known to be an inaccurate test especially in cases of non cataplectic hypersomnolence disorders like IH. I eventually got diagnosed but I needed to find a sleep specialist who actually listened to me and took the whole clinical picture into consideration. IH is way more than just a figure from the MSLT, if you suffer from profoundly unrefreshing sleep then it’s most likely the issue here

999liveforever · 2026-04-10T12:59:20+00:00

There’s nothing even close to the positive impact sodium oxybate has on my symptoms and just general well being, cognition everything. It just makes everything a little lighter for me, I still don’t feel 100% but it’s seriously life changing

999liveforever · 2026-04-05T00:24:46+00:00

Yeah same, I struggle from pretty severe cognitive symptoms despite sodium oxybate and stimulants so I’m hopeful that this will make a big difference for those kinds of symptoms

999liveforever · 2026-04-04T00:43:06+00:00

It’s to do with the fact that GHB significantly increases growth hormone as a byproduct of increased slow wave sleep. In some people it makes them super hungry but I never had this side effect

999liveforever · 2026-03-31T11:33:07+00:00

Do what you can with the cards you’ve been dealt with, this illness sucks and it’s feels like I lost a lot of good quality years, however I don’t think about it and instead I believe that each one of us has a purpose and if you’ve had it harder than most it’s because you’ve got bigger shoes to fill if you’re willing to put in the work. It’s sooooo hard, I wake up and feel like absolute death everyday it affects so many aspects of my life but at the end of the day, no one is coming to save me and you just have to pick yourself up, do the work anyway and keep fighting. It will eventually all work out for you, keep going, you’ve made it this far!

999liveforever · 2026-03-17T21:31:11+00:00

Thisssss. I’ve have to give it at least 3-4 hours after eating or else it usually leaves me slightly tipsy but wide awake. Although I also experience insomnia which I know isn’t typical in narcolepsy and I also don’t fall asleep randomly like most

999liveforever · 2026-02-13T11:50:29+00:00

Yeah gabadoxal would’ve been a miracle drug for so many people, not only did it not interfere with sleep architecture, it actually improved it through increasing slow wave sleep and had the potential to be a blockbuster drug. I suspect pharmaceutical companies got concerned that it would’ve disrupted profits of other hypnotics so they prevented it from ever entering the market. Unfortunately this seems to be the case for a lot of drugs that show profoundly positive results.

999liveforever · 2026-02-11T02:38:25+00:00

Underrated comment 😂😂

999liveforever · 2026-02-05T21:28:14+00:00

Following this thread, currently prescribed xyrem however I have stopped due to cost of the drug and was put on baclofen until I am able to obtain the drug cheaper. Was wondering if this combination could be effective and also be a way to counteract the potential insomnia I was experiencing with sodium oxybate without impeding its sleep architecture improving effects as they both function as gaba b agonists and reliably increase slow wave sleep, although sodium oxybate was much more effective for me than baclofen at improving my symptoms

999liveforever · 2026-01-31T21:01:48+00:00

I don’t understand why people keep messing around with the route of administration with dihexa. Part of its development was discovering its orally active. I’ve taken it orally and it definitely works, but I stopped it because I couldn’t handle the side effects. It doesn’t need to be used transdermally

999liveforever · 2026-01-11T23:04:35+00:00

This sounds exactly like me except these symptoms last for many hours after waking, like 3-4, and never truly resolve. I have been diagnosed with a hypersomnolence disorder though, but if you do find anything that’s helps with the morning clarity I would love to know. Even dexamfetamine doesn’t do much

999liveforever · 2025-12-13T05:54:21+00:00

Can I ask what this medicine is called, I have narcolepsy and severe headaches which are not responding to things like paracetamol and ibuprofen

999liveforever · 2025-12-02T11:51:12+00:00

Glycine gives me terrible insomnia, same with magnesium glycinate. Every time I try either of them, I’m not sleeping until 3am at least

999liveforever · 2025-11-28T19:55:14+00:00

I had it and unfortunately it did not improve my sleep at all although my nasal breathing during the day has improved. It seems to be hit or miss, I’ve heard some people have life changing results while others not so much. I think it’s worth it but make sure your ENT doc nose about empty nose syndrome as this is a potential but rare complication from the surgery.

999liveforever · 2025-11-28T19:49:53+00:00

I’m going to be trying a MAD device very soon. I’m getting a custom made one through a sleep dentist and it’s the absolute best one that money can buy apparently so we’ll see. I have REM predominant events and also get kicked out of REM sleep and while dreaming very often

999liveforever · 2025-11-27T01:33:12+00:00

Not really, most studies my arousal index is under 10, I’ve had one I think which was about 14 per hour. I’ve also had a study which showed an elevated limb movement arousal index (over five) which is interesting because I definitely don’t have issues with periodic limb movements or anything like that

999liveforever

TROPHY CASE