I have IH as well.

Hi :)

I have so many questions I want to ask, and no idea which to ask!

Have you found anything that helps with waking up? Or I suppose it's possible that waking up isn't an issue for you!?

Hi, I'm so glad to have found a fellow victim (obviously not happy that you suffer too.) I've been on Nuvigil and Ritalin. Going through some dosage changes but still haven't gotten consistent results. It is incredibly frustrating, as I'm sure you know. Waking up is nearly impossible for me. I sleep through my alarms, am so tired I physically cannot get out of bed, and if I do happen to get on my feet, I stumble around like a drunk. That's just the beginning...How does your day start

Basically exactly the same! 6 alarms which I sleep through, my mum rings anything from 3 - 30 times (with a 95decible bell attached) both to wake me up, and make sure I haven't fallen asleep again! Recently my sister's started coming round in the mornings to wake me up - because I was telling my mum I was up (sometimes very convincingly apparently) either while asleep or sleep drunk (as I have absolutely no memory of it afterwards)

I think that's the thing I find most difficult - having no, or very little, memory of what I've said and done in the mornings!

So far I've only had modafinil (provigil) but not sure why at this point - I can take it, then find myself having a nap an hour latter! I spend most of my time at home sitting on a stool, so if I do fall asleep I start falling off and wake up again!
But going back to see specialists in September....

Feels kind of hopeless, as I'm also struggling with anxiety, so I have meds that can increase drowsiness for anxiety, and the provigil that can exacerbate anxiety!

Have you looked into IH much? (Hypersomnia foundation site has links to so many interesting studies that make me vaugley hopefully that an effective treatment might exist) And were you diagnosed the 'standard' way? (sleep diary/polysomnography/MSL)

We are soulmates!

I took Provigil in the past during one of my psychiatric inpatient visits i.e. the majority of people don't think slicing yourself open is appropriate. I'm on Nuvigil now and I have found it less helpful. I have the same situation with napping.

I'm also in the same boat as you regarding pre-existing conditions. I have major depressive disorder and anxiety. But now I can't the Klonopin cause it will knock me out.

I've seen more doctors than I can count. The frustration, anger, hopelessness, and fatigue are all consuming.

I've been researching as well. I was diagnosed the standard way.

So relieved to find this post! I've just signed up. I'm racking my brains on my hypersomnia, it's the hardest thing because no one understands, hardly anyone even believes me, everyone thinks I'm making up excuses, they think I'm just lazy and slow, I can't remember anything.... it's really taking it's toll.

Cicatrices, I have the exact same problem!! I've got depression and anxiety, I've tried Klonopin but I'm out cold for like a day afterwards. The medications to keep me awake are running riot with my anxiety. I tried Modafinil but was still so tired, then Armodafinil with Dexamphetamine but I was too anxious, I'm currently trying out Modafinil with a bit of Dexamphetamine and it's doing okaaayyy... not ideal, but better than just the Modafinil or being on the Armodafinil.

It's affecting my work something shocking, they're trying to be supportive but I've had 3 meetings with HR in the past 6 months, I've only been here for 10 months.

Sometimes I wish I could just stay awake all the time because then I wouldn't have to worry about waking up. It's so hard! Help!!

Hi I have IH as well and i was prescribed 2 diff meds and neither has worked. Doc just prescribed me Ritalin. This condition is very stressful. Feels like i am not living a good quality of life and like someone said, no one understands. They think you can just take a nap and be ok when you wake up. My brain is always foggy and i can't stay focused. I just want to feel normal.

I'm starting to struggle again. I just started a new job and am already experiencing micro sleeps at work. I can't do anything other than go to work and then straight home. I feel like the Nuvigil and Ritalin have no effect. I'm currently without insurance so I can't afford to see my neurologist. I don't know what to do. I can't spend another year suffering.

I have struggled with IH my entire life. I was finally diagnosed 14 years ago after a sleep study and multiple sleep latency tests. Although I felt strangely relieved to finally have a diagnoses, it is almost impossible for people to understand. My Doctor has me on Adderall and I still have to force myself to stay awake during the day. I anxiously await a treatment that truly works.

I too was recently diagnosed with IH based on a multiple sleep latency test. I'm not sure the diagnosis is correct. I don't sleep through multiple alarms. I do fall asleep if I am on a car trip & I usually can't make it through the day without a nap. I force myself to go to work because I'm the main income for my family. Glad to get all this off my chest!

I was recently diagnosed with it as well! While the meds the doc has put me on has helped reduce the more dangerous things (like automatic activity), I still want to sleep all day.

Has anyone figured out any sort of accommodations at work that are helpful? Mornings are terrible when trying to be even a little productive.

There's a group of us on Reddit and we also have an associated Discord server. There's also a FB group too.
We are out there and awake

Hi everyone. I was diagnosed with IH about 8 years ago maybe? I have a Cognitive Disorder so it's difficult to remember. Anyway, my IH is so bad, I often sleep all night, through the morning, and then need a nap or two or three during the day. I'm on Social Security Disability, so luckily I don't have to work, but i had begun nodding out at my desk and falling asleep while driving to and from work and having to pull over at my last job. I had no idea what was going on. I'm on Armodafinol and Adderal, and still I have lots of problems. My friends and family don't seem to understand even though i've sent them info to read. My insurance company no longer covers my armodafinol because Medicare states it's a drug for Narcolepsy, not IH. There are NO drugs for IH! It's a rare disorder, thus drug companies would not recoup their research investments, so they don't develop drugs for it. I sure would love to chat with other IH people here online!

I'm on Armodafinil and Dexedrine right now. The combination seems to have helped my symptoms, but given the opportunity I can still sleep through the day. I slept until 5pm today, but the worst part is that I don't feel like I've missed anything. I've become so alienated from everyone because I spent 2 years sleeping. My life hasn't woken up yet.

I can relate to it all! Sick of it and the lack of compassion or understanding. I feel so alone. I went from working out two hours a day 7 days a week to it takes all I got to get through 8 hours at work. Then no motivation to go or do. I just want the old me back!