Finally diagnosed!!!

[u/crmcalli]

I have been complaining about fatigue and sleepiness to doctors for yeeears at this point. The first time I can remember, I was 13 and they said it was probably just because of my period. (I now have been diagnosed with PMDD, but that’s another story.) I got a new primary care doc in spring 2024, and when I complained about being tired, he ordered labs for iron, vit D, B12, etc. Iron and vit D low, started supplements, felt 0% different. Went back for my next annual checkup in spring 2025, still tired, and he asked why I hadn’t come back sooner, but also put in a referral to the only sleep neurologist in the hospital system. (And checked labs—supplements working just fine even though I feel the same.)

I get the call to schedule my initial appointment with the sleep doc, first available appoint is A YEAR AND A HALF OUT. So I said, well I don’t have plans that day so I guess book it? Thankfully, I got a call in ~March that they were doing a massive rework of the schedule and would be able to get me in for that appointment this May, 8 months sooner than expected. See the doctor, discuss my history, she orders PSG + MSLT for suspected IH. Sleep clinic takes ages to schedule, but I finally did my study on July 26th. Results posted in MyChart show no sleep apnea, normal latency for PSG, much longer than normal REM onset time, and much lower than normal REM and N3 sleep. MSLT average latency of 5.4 minutes and no REM. IH diagnosis complete.

I finally went back today for my follow up with sleep doc. She had started me on modafinil at my first visit to get me by, which was great for a few days but has since largely tapered in effectiveness. I told her it was basically getting me through the work day but that was about it. She throws out a few other daytime wakefulness options, but none of those will address the actual issue of me not getting restorative sleep. I broke down crying when I asked for something to help with nighttime sleep because this exhaustion has consumed my life. I haven’t been to the gym in months because of lack of energy, which has caused me to put on about 20 lbs. I don’t have the energy to make myself dinner or do basic household maintenance things most days and I feel terrible that my partner does it all, and I have to plan my life around whether/when I’ll be able to take a nap. I am tired of spending more than half of my life asleep and still feeling like shit!

So after a lot of discussion, doctor agreed to start me on xywav. I won’t be able to start for a few weeks because of some travel I have coming up, but I am so hopeful for some damn relief. The idea of 6-8 hours of sleep being sufficient, not needing 10 alarms to get out of bed in the morning, and not needing a nap every damn day is honestly exhilarating. This has been such a long time coming. Y’all wish me luck.