Does anyone have Narcolepsy?

denicejo

I was wondering if anyone else in this group has Narcolepsy ? I was formally diagnosed as an adult. My doctor says it’s hard to diagnose in children. It is usually diagnosed in your teens or early 20’s. The reason I’m asking is because he told me that obesity and sleep apnea can be signs of Narcolepsy, but are usually over looked as an indication. I was diagnosed with Narcolepsy after I had an MSLT test. That came about because I was still dog tired after 8 hours of CPAP sleep on the highest pressure. I was put on stimulants to help. As the weight came off the pressure was lowered. My doctor finally took me off of CPAP because I stopped snoring. Also even on a low pressure my CPAP was causing me not to sleep. She cut back on my stimulants as well. In the mean time I moved out of state and got off the stimulants because I didn’t have insurance. I wasn’t working for 6 months so I had an erratic sleep schedule. I didn’t notice anything different. But when I got a job and had to have a normal schedule that’s when things went really wrong. Extreme insomnia followed by crippling fatigue . I found a new amazing Doctor who specializes in Nacrolepsy, my old one although a Nuerologist as well dealt mainly with Apnea. My new doc explained how obesity is usually an indicator of Narcolepsy especially in children. He explained that narcoleptics get sleep signals crossed with eat signals. You’re body wants energy so it tells you to eat to stay awake. I noticed that even after my sleeve I was always hungry. I never lost the hunger. I figured I just wasn’t the lucky ones who never feel hunger again. I’m on a new mediation that allows me to sleep and OMG the difference it has made. My medication has curbed my appetite in a huge way. I now only eat when I am hungry. Although I was still losing I just couldn’t stop eating. I actually thought at one point that I had stretch my pouch

seaghdha1072

I have severe sleep apnea and have used bipap for almost a year. Since losing almost 80lbs I'm not sure if my apnea will resolve but I have my doubts. I think mine might be genetic. My mom and her sister have apnea and are not overweight at all. I don't think I have narcolepsy but do have restless leg syndrome too. Very interesting post. I am one of the hungrier sleeve patients. A lot of ppl sleeved say they're rarely hungry and have trouble getting in their daily calories, that has never been me. I have trouble NOT going over my daily calories. Happy for you this medicine is working. In the first year I was diagnosed with OSA and got Bipap instead of cpap, got a good mask and generally just got used to the whole new sleeping arrangement, I would doze off at meetings at work, or even at stop lights driving I felt I could fall asleep. It wreaks havoc on your body.

seaghdha1072

Ooops, just realized I meant to say I've used bipap for ten years not one!