Hypersomnolence from hypothalamic dysfunction. Do meds work?

Posted by zachary777 @zachary777, Aug 20 9:10pm

Hi everyone. I am 20 years old, and most of my doctors agree that I have hypothalamic dysfunction from damage caused by malignant lesions over the years. For the past hear, I have had absolutely terrible fatigue. This summer when not in school I sleep from 10pm to 9am, take a 3 hour nap starting at 12pm, begrudgingly get through the afternoon, take a 2 hour nap at 6pm, and sleep through the night like a baby. It’s definitely not normal. I’m starting college soon and last year was so hard to get through. I had a home sleep study that showed no apnea so no answer. I was wondering if anyone else had this and what if any thing helped. I read about drugs like modafinil and pitolisant. Do they work? I’m trying to see a sleep specialist soon but don’t even know what I would say or push for. I’m already on low dose adderall for energy. Thanks!

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celia16 | @celia16 | Aug 20 9:56pm

Have they checked your thyroid?

zachary777 | @zachary777 | Aug 22 2:53pm

In reply to @celia16 "Have they checked your thyroid?" + (show)

@celia16 yes, and it was fine. It was at that point that my endocrinologist just put her hands up and said “it’s hypothalamic, sucks to be you!” Didn’t actually say that but it’s basically what came across.

celia16 | @celia16 | Aug 22 5:15pm

In reply to @zachary777 "@celia16 yes, and it was fine. It was at that point that my endocrinologist just put..." + (show)

@zachary777 , i don’t have any advice, but I think the sleep specialist might be a good resource. It’s unfortunate the endo has no advice. Maybe, a second opinion?

I know that once a certain sleep pattern gets established, it’s difficult to break. I recall back during a particularly hectic year in college I was staying awake a lot studying for exams. I had also worked parttime. After my last exam, I crawled in bed and slept almost constantly for over a week. I got up at 8 and got breakfast, fell asleep on the couch by 10, slept until 6 when my fiance got home, had dinner, then went to bed by 9. Slept til 8, repeat…… It was a struggle to get out of that routine.

I’ll also add that checking for vitamin deficiencies, especially B12, might be good. Also, exercise gives me more energy so working out is important. Good luck with everything!

zachary777 | @zachary777 | Aug 22 9:57pm

In reply to @celia16 "@zachary777 , i don’t have any advice, but I think the sleep specialist might be a..." + (show)

@celia16 Thanks for sharing your story! I’ll try and get a new endo and a sleep specialist earlier. I’ll also ask if they can test for vitamins. Thanks for the advice!