Just an update to end this thread: My doctor didn't want to do the MSLT, because he said my last sleep study showed no signs or narcolepsy and he didn't feel my symptoms exactly fit. Instead, he started me on Sunosi, for "sleep apnea related excessive drowsiness" so I'm starting that today. Hope it ...

There are some overlaps between your story and my son's, it is anecdotal but perhaps some of his experiences might be of help. ... Good luck! Thank you so much for all your advice. Yes, I will be meeting my deductible and can push for the MSLT. I do have back pain related to Marfan's (dural ectasia...

Janknitz wrote: ↑

Wed Jun 17, 2020 1:44 pm

How are your iron levels on supplementation???

Just fine now. My iron levels were never actually low, only my iron absorption dropped low because of the heartburn meds. Both are now testing normal.

I hope you are napping WITH your machine, not just at night. Otherwise, the stress of sleeping even a little bit without the machine could be messing you up. I try to NOT nap during the day. Usually I'm working and can't, but even on weekends, I try to avoid napping so I can sleep better at night. ...

EDIT: Here's my sleep study results: https://imgur.com/a/9dmZIMz I haven't started any new medications or made any lifestyle changes in over a year. I'm currently taking: birth control Fexofenadine for seasonal allergies (which I do stop in the winter, but I've had the same symptoms both off and on....

I have an appointment with my sleep doctor (a pulmonologist) on Thursday and since the only appointments I can get are months apart, I want to make it count and need some advice. Let me know if any of this is confusing, I had to write it in multiple short bursts. In the last two years, I've been exh...