Newly diagnosed with IH and looking for some advice
Hi everyone! I just joined, as I was recently diagnosed with IH and am i need of some advice and a community.
I am a 21 y/o female and my symptoms began at a very young age. I have been extremely fatigued what feels like my entire life, but the main turning point was when I got mono at 11 y/o. I remember being so tired for weeks that I would wake up for school, fall asleep at school, nap once i got home, wake up for dinner and go right back to bed. My middle school and high school years were a continuous cycle of this and I ended up getting mono two more times.
I finally started seeing a psychiatrist last May (2025) and she started me on Zoloft for depression and Adderall for ADD (mostly for sleepiness). The medications were working very well for me for a few months but after summer it all went downhill. I was so exhausted I was sleeping from 11pm-4pm for weeks. My primary care physician referred me to a sleep specialist and I had an appointment in October 2025 where we talked about a sleep study, but he said I needed to stop taking my medications for accurate results and I unfortunately wasn’t in a place where I felt like I could go off of the medications.
Fast forward to the beginning of this year, I began having severe pelvic pain and started seeing a holistic doctor. She put me on many supplements to repair my gut which I hoped would help my sleepiness. Simultaneously, I ended up having a laparoscopic endometriosis excision surgery February 26th where I was diagnosed with endometriosis. After recovering from surgery, I had an insomnia episode where my body felt so free and energized for the first time in my life. Unfortunately, this didn’t last long and I returned to being extremely sleepy. I ended up getting a sleep study at the end of April, however I decided to continue taking my Zoloft because I was desperate for an answer and didn’t want to wait to wean off of it. My results came back with idiopathic hypersomnia as the diagnosis. After meeting with my sleep specialist, he told me exactly what I was afraid of which was that continuing to take Zoloft for my study could be hiding narcolepsy in the results.
I am going to attach photos of my sleep study results, but has anyone else had a similar experience? How should I proceed to get the right treatment or medication? Adderall is no longer working well for me, I tried vyvanse for awhile and felt like it didn’t keep me alert enough and I am currently trying out concerta but I’m still on the staring dose and it’s not enough to help at all. I am going into my senior year of college and am feeling a lot of anxiety about the future. It’s very difficult watching my friends figure their lives out and I still can’t wake up to an alarm (or 20). Not really sure what my goal of this post is, but it would be nice to hear any advice, similar experiences, or just someone who can relate to being so damn tired! 😆😆