I joined the group in September and I am just getting the energy to introduce myself. I have had N since 1981 and went to the sleep lab in 1994 where I was officially diagnosed. I was in the provigil drug study for about six months and dropped out because I felt horrible. I tried Provigil twice since it has been on the market and just can't take it. I fall asleep every two hours so my life is very limited. I am self employed so at least I can make a living. I hate having to isolate myself so much, but it is the way I cope. I live in New orleans and survived Katrina. I stayed during the hurricane, but my life has never been the same. I was diagnosed with sleep apnea in the July after Katrina which was a surprise to both me and my neurologist. I definitely don't fit the profile. I am a very thin 52 (almost 53) year old female. I also developed insomnia since Katrina and never had problem falling asleep before. So the new me is..a narcoleptic with insomnia and sleep apnea!! But, I love to share stories and experiences with other PWN because then I don't feel so islolated. So thank you all ahead of time for sharing a little of your life with me!
welcome to the board - you will find people here to talk to that may not have been through quite as much as you but are more than willing to listen and chat with you
this is one of the best forums for people with narcolepsy, others on this board have sleep apnea you just have to search them out ... or they'll come and find you ... that was not meant to sound quite so threatening.
when i was younger i had insomnia quite badly but i have to say that has for the most that has gone with my narcolepsy though everyone is different
glad you have found us
Aha, thanks for catching the misconception that narcoleptics are ALWAYS on the verge of sleep. Insomnia is very normal for narcoleptics, because of how N works...it is not an overwhelming force of sleepiness, it is an inability to balance the sleep/wake cycle. Hypocretin is a sleep/wake regulator and basically stops and allows the flows of other chemicals to control alertness. As we lack hypocretin, the chemicals are all pretty much flowing together and whichever is winning out at any given point determines our alertness. I'll see if I can get my sleep doctor's power point slides on this...I've been meaning to.
And if working in the sleep clinic with my doctor has taught me anything, it is that anyone can get apnea, there is no true "picture" of an apnea patient.
My neurologist said she is seeing sleep apnea in post menapausal women. Which is one explantion of why after many sleep studies this was the first time it showed up. Wow!! it would be great if you could share the power point presentation!!!