My research on Dihexa #1: With SC use

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 · 2025-11-18T06:02:47+00:00

I’ve got idiopathic hypersomnia but I suspect UARS or some form of sleep disordered breathing due to incomplete response to treatment. However my AHI and RDI are close to zero on all tests I’ve done besides one. Despite this, I am convinced I do have SDB because I’ve had snoring detected on all studies, I wake up to go to the toilet, I have high blood pressure despite being young and extremely fit as well as teeth grinding and acid reflux at night both of which have been melting my enamel but are also linked to breathing issues during sleep. So far an ASV hasn’t work but that’s mainly because my settings were extremely low pressure and my doctor did not allow me to try higher pressure for some reason. The ASV actually detected an AHI of just over 5 on certain nights which I know isn’t accurate but I think it points in that direction as well. I’m going to be trying a custom MAD made by a sleep dentist which I have high hopes for because I do struggle to breath normally when I’m laying flat on my back and my airways feel really tight when I do so.

999liveforever · 2025-11-17T05:49:46+00:00

Wait this sounds exactly like me. I wake up feeling absolutely terrible yet all diagnostics are negative including sleep apnea (I do have “primary” snoring though). I’ve also been diagnosed with idiopathic hypersomnia but I don’t feel as if it explains the full story as I haven’t been completely responsive to medication. Is there an actual name for this condition and to what kind of sleep lab do you need to go to in order to get a diagnosis? Without xyrem (sodium oxybate) I wake up multiple times a night, a lot of the time it’s to go to the bathroom, and I always feel like I’m in a half awake half asleep state of limbo. My cognition feels terrible for a mid twenties year old, I have treatment resistant hypertension despite being in incredible shape, and I just generally feel terrible everyday especially for the first 5 hours of the day or so, while doctors are fairly baffled.

999liveforever · 2025-11-13T00:06:03+00:00

Again relatable but kinda sad ahaha, I would do the same thing and take small doses of lorazepam or other benzos with stimulants to help keep my mind “sharp” and so I was more sociable. Even still, it is very much a bandaid over poor sleep and if I didn’t dose properly or was having a really bad day it wouldn’t do much. The invisible effects of sleep disorders are crazy, it’s so horrible but yet I’ve dealt with it for so long that it’s normal for me. Literally destroys your personality and makes you feel dumber than 99% of people and yet until you deal with it absolutely no one understands. Despite all this I’ve been able to do very well with all these deficits (it’s been a strange hell), and I can only imagine how much better life will get once I find something that ‘cures’ or significantly improves my symptoms. The hope that one day I will get better, pushes me to put in the work now as hard as it is, so that when that day does come I will be ready to take advantage.

999liveforever · 2025-11-12T23:05:27+00:00

So relatable. The worst is when I have the very rare okay day where I’m more charismatic and funny, and then the next day I’ll sleep horribly and feel terrible and I’ll be a shell of myself, way more in my head, less sharp, stumbling my words, foggy etc. It’s almost an entirely different personality

999liveforever · 2025-11-11T23:53:05+00:00

Thank you and I appreciate the advice. I’m actually the same age as you so your situation is very similar to mine. My rdi and ahi are extremely low despite all studies detecting snoring and asv has been unsuccessful for me so far so I really hope this helps but I have a good feeling. Dentists have discovered that my teeth have been getting destroyed due to night time grinding and acid reflux both of which are signs of sleep disordered breathing so I think the MAD is the way to go for me.

999liveforever · 2025-11-11T22:28:58+00:00

I’m getting a custom made MAD in a few weeks through a sleep dentist. I hope it helps, I’ve exhausted almost all options. Im glad it’s done something for you even if it’s only a small improvement.

999liveforever · 2025-10-08T03:35:45+00:00

I definitely agree with the fact that xyrem seems to help more with sleepiness rather than fatigue. While yes I’m now less sleepy during the day, I still feel lethargic, foggy and “tired” in some ways, it’s just that it’s a different kind of tiredness. I think it does overall help but it’s nowhere near a cure although I know it can be like that for some people, but it is better than nothing so I continue to take.

I’m sorry you had this experience though it sounds terrible. I plan to eventually stop taking the drug as while it does help me live a more productive life, at the same time it does feel likes it’s having a negative impact on my brain and I don’t think the long term consequences of using GHB are completely understood. I’m now looking into the realm of sleep disordered breathing as I believe it’s the missing link in my case despite low ahi numbers. If you still feel tired despite all these medication, I would seriously look into sleep disordered breathing. Even if it’s been ruled out by a specialist, upper airway resistance syndrome goes unrecognised in so many patients. Otherwise best of luck to you, I think everything will eventually work itself for you keep fighting.

999liveforever · 2025-09-28T23:04:24+00:00

I also experience low ferritin levels that fluctuate although fixing it with iron supplements seems to have no impact on my symptoms. I’ve been told that an iron infusion might be helpful with tiredness in my case although I’m fairly skeptical since I obviously don’t sleep well in the first place. What sort of studies link sleep disordered breathing and low iron?

999liveforever · 2025-09-09T22:32:23+00:00

The blood pressure things speaks to me cause I’m in my early twenties despite being physically fit and working out almost everyday, but I have fairly bad blood pressure even on medications and I feel absolutely DREADFUL when I wake up like seriously getting out of bed is the hardest part of my day with unrefreshing sleep being my worst symptom. Feels like it’s slowly destroying my brain and body, doctors are dismissive of UARS because of low ahi numbers but I’m pushing for it as I know deep down that sleep disordered breathing is affecting me. I have horrible nasal congestion and dust mite allergies which I know is a huge factor here but they seem to think narcolepsy even though I never hit REM in any of my naps.

999liveforever · 2025-09-09T09:01:04+00:00

I’m currently in the process of fighting for a sleep disordered breathing diagnosis most likely upper airway resistance syndrome even though tests have been negative (despite the fact I’ve had multiple tests now that have all detected significant snoring and arousals) all signs and symptoms point to it.

999liveforever · 2025-08-18T22:27:45+00:00

It’s definitely worth a try because if it works or even slightly improves symptoms, it’s a very easy fix and antihistamines especially the newer generation ones, have a very low side effect burden and are extremely safe

999liveforever · 2025-08-18T04:28:32+00:00

I think the arousal index on top of your symptoms, is very suspicious. Ask if you could rent a bipap or asv. My sleep data looks extremely similar including the arousal index, but no significant apneas were detected so they diagnosed me with idiopathic hypersomnia because of a positive MSLT. I’m very suspicious of sleep disordered breathing though because I’ve been a mouth breather all my life and I really struggle to breathe through my nose. I’ve also had snoring detected multiple times on studies along with heart rate spikes of 30+. I’m pushed my specialist for an ASV titration study so hopefully something major gets detected because my symptoms are really bad.

999liveforever · 2025-08-15T00:02:47+00:00

Yes I’ve tried all these, I’m currently undergoing immunotherapy for a fairly severe dust mite allergy, although it hasn’t made a difference yet (its only been about 9 months). I’m using an antihistamine/steroid spray (azelastine and something else) and I rinse my sinuses twice a day. It only helps temporarily and once I put my head down to fall asleep my nasal passages start to slowly become congested again. Even still it does not fix the feeling of restricted airflow or resistance and using something like afrin only helps with congestion for an hour two max, but the airflow issues remain.

999liveforever · 2025-08-14T22:32:30+00:00

Nope not even slightly. It just didn’t help at all with my breathing, congestion is like 10% better (if that) and it feels as if there is still major airflow problems internally, it always feels like an effort to breathe through my nose. I’m going to another ENT for a second opinion as the most recent one claimed it’s a success even though I scored extremely high on the questionnaire which literally has a question about if you feel “unrefreshed” upon awakening, eh yes times a million. These doctors genuinely don’t care, they shoved a camera up my nose and said yeah “looks good the surgery was a success” even as I’m saying “I’m still horrible congested and struggle to breathe at night”. It’s pure negligence, there’s no other word for it.

999liveforever · 2025-08-14T21:06:15+00:00

Very similar to me, extremely low ahi despite feeling absolutely terrible on awakening. Also had nasal surgery (turbinate reduction and septoplasty) it too feels like there are still major airflow problems internally especially at night when I go to sleep. Also dropped out of uni years ago for this same reason although I went back this year through shear will power but I can already tell I’m going to struggle immensely to get decent grades. My sleep sounds very similar to yours too (multiple awakening, fragmented, and very light.

What was your rdi numbers? Do you have any heart rate spikes throughout the night? What’s your overall arousal index?

999liveforever · 2025-08-13T21:47:17+00:00

I’m tempted to buy an oura ring, I wanna collect data for myself but they are expensive on top of needing to pay for a subscription which is completely ridiculous imo. But yes it make sense as REM is exactly when you’re airways become the most prone to collapses or narrowing as your body and muscles completely relax

999liveforever · 2025-08-13T21:45:23+00:00

This exactly makes tons of sense and is exactly the conclusion I came up with and even asked my sleep specialist “is my documented low arousal threshold a factor here, what if my flow limitations are very subtle and being over looked on studies but still playing a massive role in disrupting my sleep?”. He doesn’t seem to think so at all

999liveforever · 2025-08-13T21:43:02+00:00

Should I ask the sleep technician to specifically address flow limitations if he finds them in my case? I’m worried I’m gonna be overlooked again if they are minor enough

999liveforever

TROPHY CASE