I've treated by sleep doctors at Henry Ford ever since I told my psychiatrist " gee I lie down for a nap and it's kind of cool that I start dreaming immediately" Not to mention falling asleep etc. a lot. 2 sleep tests. Henry Ford is serious about sleep disorders and didn't trust the first test. Yup. Narcolepsy. My first neurologist was great. After he retired they assigned me to a pulmonary idiot. Now I'm back with a neurologist again.
For 20 years I have taken Xyrem but switched to xywav because I have hypertension. Even though I'm on the verge of skinny and active. I laughed when the drug insurance woman began to suggest yoga. Look lady. I am 5'8" and weigh 133 pounds. You think I need the salt? Yoga! That cracked me up. I walk but my spine is fused from L2-S2. Yoga my ass. But I can 10,000 steps. And yes I see a real live cardiologist. Another neurologist for migraines. I also take 400 mg of Modafinil. At about 5 am. And I see an endocrinologist for osteoporosis. My neurosurgeon would like the 12 screws to stay put. I have no complaints really. This was winter of getting a tune up. I'm sick of doctors. But I'm intrigued by how only now the comorbid conditions are coming to light. Orexin/ hypocretin. What does it do? A special little sleep job. Oh no. It does more than that as it turns out. Plus if you have narcolepsy your blood pressure doesn't behave so well at night. I stopped reading stuff but lately I'm becoming curious all over again. I've lived with it for 50 years. But the symptoms have changed as I've aged. Morphed. That doesn't surprise me one bit. I am fortunate that my doctors talk to each other in the sense that they try very hard not to screw up. And my neurologist is likewise becoming fascinated with the other stuff that comes with this apparently autoimmune (with a gene here or there) disease. The brain is a very weird place to snoop around in. No tidy little rooms marked sleep. The hypertension on the next floor. Migraines are outside around the temporal lobes. Oh no that's not right. Start over. Shall we look for manic depression in the attic. Oh that one decided to retire. But narcolepsy is the bitchy star thumbing her nose at everyone. Can't touch her. Unless I guess you're a lab rat. She's a blood brain barrier warrior in high heels. Bitch.