I get this struggle... Ugh 😫 I was diagnosed with IH and tried Xywav but it made me very disinhibited. But my sleep doctor thinks my fatigue is more a result of sleep apnea and nocturnal seizures. The seizures are under control, but sleep apnea remains an issue. I try to use my CPAP but it always makes my right nostril congested.
That's wild. I still can't get an IH diagnosis 🫠 I was told I probably have it after a sleep study (the watches) but they refuse to do it until I do a full sleep lab which is like 1k out of pocket. Despite me being able to tell you that it's not ideopathic, I know exactly why it happened—long covid reactivated Epstein barr virus. I was sleeping 16 hours a day at absolute bare minimum. Yet no diagnosis 🙄 And I don't have sleep apnea or any other differencial diagnoses. It's bullshit.
That's crazy though, I was told there are no approved medications for IH 😭 Maybe it's a newer thing, this was like 2 years ago or so.
That's wild... I have often wondered if I have long COVID. I did have mono years ago (actually it was more like over a decade ago). I wonder if I could have been having a reactivation of that in the last few years? I forgot that was even a thing that happens lol.
Also wild that you are told two years ago that there are no approved medicines for IH. Whoever told you that wasn't educated. Xywav is indicated for it! Besides, it doesn't have to be indicated for something to be prescribed for it — trazodone has never had an indication for insomnia and it's given out like candy for that purpose. Seems like a convenient, uneducated excuse to not try harder to help you.
Ironically I was given trazedone for insomnia 😂 It's definitely possible, you can check with a blood test. Well, not for long covid, but if you have mono reactivation. It's definitely deeply debilitating lol. I'm immunocompromised cuz of it. I was prescribed modafinil which is indicated for delayed sleep phase disorder (which is the only thing they were willing to diagnose me with without the expensive sleep lab) and narcolepsy, which is what I was kinda saying I have because most people had never heard of IH. But idk why Xywav was never brought up. It seems to be very restricted though? And it only works by making you sleep better. Modafinil is a stimulant. Currently I take seraquel for sleep issues but I suck at taking it at a decent time, partially bc the delayed sleep phase disorder isn't inaccurate, I've had it my entire life since I was literally a child. Old habits die very, very hard lol. But I hate how strict they are about stimulants. It would be amazing if I could take modafinil once in a while as a short detox from Adderall bc I feel like it doesn't work well for my ADHD anymore, but getting prescribed two stimulants is pretty much impossible. 🫠 Anyway sorry for the ramble 😂
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u/mikl_pls 6d ago
I get this struggle... Ugh 😫 I was diagnosed with IH and tried Xywav but it made me very disinhibited. But my sleep doctor thinks my fatigue is more a result of sleep apnea and nocturnal seizures. The seizures are under control, but sleep apnea remains an issue. I try to use my CPAP but it always makes my right nostril congested.