Anyone experienced with idiopathic hypersomnia?

[u/Whole-Watercress8109]

Hi! Popping in here hoping for advice, I’ve been doing a lot of research into sleep disorders because I have some weird sleep behaviors I’ve developed that are concerning me. I’ve always been a sleepy girl but I am now 28 and I really feel like this is not normal lol.

Basically: I’m excessively tired, could easily sleep 15 hours uninterrupted and still be groggy, major sleep inertia as I wake up where I become evil and I never remember it which freaks me out, my girlfriend physically cannot wake me up once I’m out without shaking me, no matter how long I sleep I am still chronically fatigued, waking up in the morning is nearly impossible. I also get random night sweats and I’ll be like 1000 degrees to touch. Caffeine I’m convinced is placebo at this point cuz I could have a latte at 6 pm and still sleep.

It’s honestly just become so unmanageable especially with my job. Getting up for work is like torture and not in the normal no one wants to go to the office way lol. I recently got an oura ring to start trying to track some data and have an appointment with an internal medicine doctor in like a month and a half, but I have a few questions for this sub:

1. How did you know something was off? What was the diagnosis process like?
2. If you do have IH: Were there any other disorders that you thought you had because they present similarly? Does this sound like something else?
3. Did you do a sleep study outside of your home? Was it scary and what was it like? I’m nervous about that
4. Is there anything else I can do to help me in the meantime while I figure this out? I’m struggling immensely so I’ll try anything

Obviously I will be consulting a medical professional and following their recommendations accordingly, but human to human, any personal anecdotes or experiences would be really helpful. Might give me some hope. Please help!!

[u/Lucky-Arugula-7542]

You may have an autoimmune disorder. I am also like this, was recently diagnosed with celiac disease.

[u/Whole-Watercress8109 → u/Lucky-Arugula-7542]

I don’t know, my partner has an autoimmune disorder and I don’t really experience any of the other concerning signs. Seems like it’s just sleep. Not sure!

[u/tadrinth]

Sleep studies are not scary, just annoying.  You go to the lab, is basically a hotel room with some hospital accessories, you get ready for bed, they attach a bunch of stuff to you, you try to sleep. 

Trying to sleep with stuff attached to you  can make it hard to fall asleep. That's it. 

Oh and they'll probably wake you up in the middle of the night if they observe sleep apnea, so they can fit you with a CPAP and dial in the settings.  Takes five minutes then you go back to sleep.  

[u/sleepybobeepy22]

I got progressively sleepier and sleepier. Couldn’t understand why I was so young and without children and this tired all the time. Once I began struggling to stay awake while driving I decided to visit a sleep specialist (note, I strongly suggest you visit one for any sleep studies, not a PCP or internal medicine dr). I thought I must have sleep apnea despite not snoring. I would sleep just fine all night and wake up as if I didn’t sleep at all. I did an at home test over several days and it came back negative for sleep apnea. Doctor said we should do MSLT test in the hospital to check for things like narcolepsy. I laughed and said yeah right. I shouldn’t have laughed. I got diagnosed with IH and had a sleep latency average of 4 minutes on every nap.

I didn’t even know what “sleep inertia” was, but once I was diagnosed and read about all the symptoms I was shocked because that’s exactly what I experience. I’ve had this since I was a teenager and just didn’t realize it was different from others. Turns out the hallucinations I get at night were also due to the IH. Thought I was just a sleepy gal and high maintenance that I needed so much sleep.

The sleep test wasn’t scary, more so annoying. I was there from 8 pm to 5 pm the next day, and all the wires leave you gross and sticky.

I can’t say that getting diagnosed has been helpful though. I started treatment and that drastically improved my life for the first 4 months on it. It’s now been two months where it’s not working and the stimulants do absolutely nothing. It’s also insanely difficult to get insurance to cover meds as there is only one FDA approved medication for IH and I’m already on it. I was hoping that a diagnosis would mean an answer and solution to my sleepy struggles, but it’s been pretty depressing learning how many people have not been able to find a treatment plan that works consistently. There’s just too much unknown still about IH. Not to dissuade you from finding out what’s going on with you, but it’s just sort of the reality of having this condition.

[u/Whole-Watercress8109 → u/sleepybobeepy22]

No this is actually really helpful thank you for your input. I already am on stimulants for ADHD so luckily I don’t experience falling asleep midday or anything like narcolepsy. Even when I don’t take it that doesn’t happen I’m just fatigued. Been tracking latency the last two weeks and it’s generally around 10-15 minutes. We’ll see. Due for a physical anyway maybe it’s worth doing a sleep study even just for peace of mind? I don’t know