So, after my first visit with a real "sleep doctor" he was positive the problem was N after talking to me for about 5 minutes. EDS, HH, SP, not remembering how I got places, etc. So he ordered a sleep study.
I was SO ANXIOUS about the sleep study. It was really hard for me to be off my meds for two weeks (adderrall.) My husband had to take a week and a half off of work to be with our kids because I was such a mess. When I tried to go to sleep that night, I had worked myself into a minor panic that I wouldn't be able to sleep. It took me about 20 minutes to fall asleep. (It usually takes me MAYBE 3 minutes, often less.) The sleep study does show elevated heart rate. I slept like crap and then woke up at 2, with that feeling that someone was watching me. And the tech happened to be in the room to tell me to turn over and let me tell you, that was scared me so badly that I couldn't calm down for two hours. So, yeah, even more messed up sleep.
The next day for the MSLT, I was in a panic. I felt like I had "failed" the PSG. I felt like everything was riding on these damn naps. I fall asleep at the salan. I fall alseep talking. I fall asleep driving. That day, I couldn't fall asleep AT ALL. Again, the test shows elevated heart rate. It didn't help that (here in sunny LA) something was wrong with the room and it was COLD. The tech kept having to put a sweater on when she came into the room. She turned on the heat at one point and still nothing happened. And of course, she wouldn't let me stay in bed. So I got to crawl into a COLD bed, wiggle around trying to get warm, panic because it was taking so long, panic because I wasn't alseep. All, of course, while listening to doors slam, people talk, etc etc.
I went in today to talk about the results. I started off telling the dr that it was NOT an accurate representation of my sleep. His conclusion is that I "don't sleep well." Maybe I can try sleep better, more like a log. I explained normally I DO sleep like a log. Sometimes my husband can't wake me up. I walk half asleep into objects. (I currently have bruise the size of a cantaloupe as evidence.) His solution: More Adderall. Come back in a month.
I got home and looked at the sleep study. Some things that jumped out at me:
N1 sleep 19.7%
PLM index 15.4/hr.
Snore Arousals 9.0/hr, LM Arousals 8.4/hr, Spont Arousals 6.8/hr.
My sleep graph is a mess. I had one REM period, around 4:45. (It happened about 30 minutes after I finally managed to get back asleep after being scared out of my wits.)
Any thoughts on my next move? A neurologist? Fight with current doctor? If I dont' have N, that's okay. I am not pushing for something I dont' have. I just want this problem solved, not bandaged over. I just don't know how I can even plan a move nto knowing how much of this data I should keep and how much I should toss out.
Thanks for any words of wisdom.