Anyone here with narcolepsy or idiopathic hypersomnia?

My wife got an IH diagnosis about three years ago, and has been taking modafinil off-label in the mornings for wakefulness and trazodone at night to help maintain a productive sleep-wake cycle. Since taking it, life for her has been much more normal: she's no longer nodding off at random times throughout the day and is generally much more awake and aware. No more falling asleep during video games after work! (Despite how funny that could sometimes be!)

Prior to the diagnosis and medication, sporadic daytime naps were common and often unproductive, as you've said. But perhaps most significantly, it had a huge impact on her memory: there are loads of events over the past decade that should be significant enough to be remembered, but are either a haze or complete blank for her. That's seen substantial improvement thanks to the treatment.

If you had any other questions, I can always ask her or just bug her to sign up for an account on here!

Yep, me too. I do love that there is a fancy Latin medical term that translates to "you're really sleepy, idk why".

I was seeing a doctor who was iterating through stimulants to see if any of them would help, but stopped due to temporary insurance issues, and never got around to rescheduling after I got them fixed. (I am also severely lacking in executive function but I think that's unrelated.)

So I just take lots of naps, which is ineffective but at least relaxing. Caffeine takes it from "literally cannot keep my eyes open" to "would rather be napping now". Sometimes I just sleep until 19:00, if I don't have any urgent reasons to get out of bed that day. Perhaps I should try the doctor thing again.

(I wish we'd get over our societal fear of drugs. I can iterate through stimulants just fine on my own, but I can't legally buy them.)

...huh. Yes, I have idiopathic hypersomnia, and I've very rarely run into anyone who even knows what it is, let alone being diagnosed with it.

Daily torture is a good description, and something I've found particularly tricky is making most people - people already familiar with poor sleep quality in their own lives, but at a different level - understand how much it can truly damage someone. They're often coming from a good place, trying to relate and sympathise, but I've had a lot of conversations analogous to this.

The incredibly good news, news I absolutely wouldn't have believed if someone told me it was possible even a year ago, is that after many, many (mis)diagnoses and ineffective attempts at treatment over literally 15 years I do seem to have found something that works for me: lisdexamfetamine (brand name Vyvanse/Elvanse, depending where you are, but they're both the same chemical from the same manufacturer).

For context: I'm 35, and have been actively in the mental health system since my early 20s. Almost every specialist I've seen has looked at my Venn diagram of symptoms and believed I was suffering from the condition they primarily work with, and so started treatment accordingly. Eight or nine different psychiatric medications, each tried over months or sometimes years, had no effect at all - not that they didn't help, but they were literally imperceptible even after ramping up to the maximum human safe doses. One did have an effect, which was to hospitalise me. Therapy of all the various flavours seemed to hit an impasse at "well yes, by definition I'm ok enough to have this conversation now, but I'm worried about the next time my brain randomly betrays me in a way beyond my control and I'm not sure how talking will help that part".

Four or so years ago I was diagnosed with IH after a sleep study, and from that point I tried pregabalin (unsuccessfully), before losing two years to pandemic-related waiting lists. For whatever reason I had more faith in the IH diagnosis than any of the others I'd received over the years - maybe because it was the only one that came with a brainwave scan they could point to. Not sure if that's an unhelpful bias on my part or a useful preference for hard evidence, but I mention it because really we still can't know if IH is causing all the other symptoms or if I just won the mental health condition sweepstakes and also have one or more of the other diagnoses too.

It was pure coincidence that an ADHD diagnosis happened to come along for me last year - I'd been on a waiting list for multiple years (yay adult ADHD shortage), had basically forgotten about it, and was focusing on the sleep question anyway. The first sleep specialist was uncertain about stimulants as an option, quite reasonably wanting to focus on improving sleep and worrying they'd do the exact opposite. By the time they did decide I had ADHD, I'd already tried and given up taking enough other drugs that there was a definite increase in willingness to try anything, on my part and theirs.

And it worked. In the space of a month, I was comfortably sleeping 7-8 hours and feeling well rested. I've literally never experienced that in my life before. Mood swings are all but gone, baseline happiness is up an incredible amount, physical health is the best it's been since I was 22, and I'm juuust getting to the point now it's been long enough that I more or less believe it's not all just going away one day. Don't know if I have ADHD, IH, or both. I'm inclined to trust the IH diagnosis based on the sleep study data, but I can believe it's not the only thing going on in there. Whatever the ultimate truth is, I'm better in a way that I had long since given up hope on.

I've still got my share of general problems, but I'm going back to therapy next month, and it feels like that'll actually be something I can make proper use of this time.

I guess I could google this, but what is idiopathic hypersomnia? How does it manifest itself in your life?

Narcolepsy seems like a cake walk compared to IH. Narcolepsy has a lot of management options and even without them, quick naps can give a burst of normalcy.

I have narcolepsy!

Wow is this how doctors feel when someone faints on a plane?

I have cataplexy, too, and I've been on and quite a lot of the heavy meds. I'm excited to have such a niche community I love show up here!

I'll have to come back tomorrow to write about my experience, it's too late tonight but I'd like to contribute! I suspect this group understands :') IH and narcolepsy are both absolute bastards.

I never recieved a diagnosis but had hypersomnia in my early twenties that nearly ruined my life. Sleeping for twelve plus hours with inability to meaningfully wake up, derealization, depersonalization. I was so useless that I couldn't motivate myself to get in front of the right doctors to get looked at. Almost lost my job and destroyed a budding career as everyone thought I was just being lazy or abusing drugs, luckily I was part of a union and the local rep convinced me to get seen by a Psychiatrist who got me off work for eight months on long term disability.

It was humiliating, I was being shuttled to the Psychiatrist by my mom's boyfriend. I was largely infantilized and hopeless. Slowly I got better and was able to return to work but I would still suffer from attacks for years, slowly the episodes would get shorter in duration and severity until they largely ceased in my early thirties.

Years and years later I found out about Kleine-Levin Syndrome, unfortunately it was way too late to get any sort of diagnosis but I am so sure this is what was affecting me. It was great to finally have an "answer" to what was going on but I wish everyone around me during that time understood. There are some people, thankfully not in my life anymore, who probably think I'm complete trash based on my behavior at the time. There were also people in my life who were so gentle and so helpful to me at that time