Narcolepsy Support Group
A sleep disorder (somnipathy) is a disorder in the sleep patterns of a person or animal. Some sleep disorders can interfere with mental and emotional function. If you are having trouble falling asleep or having some other kind of sleep disturbance, this group is for you.
So.. I was almost dreading meeting my new sleep doc.. they had a cancellation, so I was able to get in t 2 1/2 weeks early. And lemme tell ya.. hes awesome! NOTHING like my last idiot! yay!
So I don't have the "official" diagnosis of N, because my last sleep study was borderline (likely because I slept 26 hours the day/night before) and my last sleep doc had a lot of very wrong preconceived notions about what N is (naps are always refreshing etc).
After one detailed conversation with new guy, He told me I have narcolepsy and that while we do have to repeat the sleep study for 'insurance purposes" - he is putting in his note that I do have N. He actually LISTENED to me!.. it was amazing. He didn't look at me like I was making this crap up, he seemed genuinely interested too. ... after I told him about how much Desipramine helps, he looked it up and read up on it and said it makes TOTAL since that it helps because of how it suppresses REM, and that it was actually one of the very first drugs used to treat N.
He said I need to be off Desipramine as long as possible before the study, and to really shoot for 1-2 weeks. And about 4-6 days off stimulants He said "Aim for at least a week... we want that narcolepsy to really show up!" I also don't live alone anymore and live back in town where friends/family are, so I'll have people who can try their hardest to keep me awake enough b4 the study (no sleeping 26 hrs again damnit)
He took me off Adderall (side effects too much now) and gave me a script for Nuvigil... however, my insurance wants prior authorization.. ugh. So now i get to wait a few weeks while i pray he is gunna be convincing.
heh He also was very worried about me driving home after the appt (i worked all night the night before and was literally falling asleep before he walked in) - he offered me coffee and suggested i take one of my adderalls Lol.
whew sorry this is so long..I'm just a bit excited about it all =) (except for having to go off desipramine/stimulants again and having another sleep study lol).
YAY FOR AWESOME PORTLAND LEGACY SLEEP DOC! =-)
So I don't have the "official" diagnosis of N, because my last sleep study was borderline (likely because I slept 26 hours the day/night before) and my last sleep doc had a lot of very wrong preconceived notions about what N is (naps are always refreshing etc).
After one detailed conversation with new guy, He told me I have narcolepsy and that while we do have to repeat the sleep study for 'insurance purposes" - he is putting in his note that I do have N. He actually LISTENED to me!.. it was amazing. He didn't look at me like I was making this crap up, he seemed genuinely interested too. ... after I told him about how much Desipramine helps, he looked it up and read up on it and said it makes TOTAL since that it helps because of how it suppresses REM, and that it was actually one of the very first drugs used to treat N.
He said I need to be off Desipramine as long as possible before the study, and to really shoot for 1-2 weeks. And about 4-6 days off stimulants He said "Aim for at least a week... we want that narcolepsy to really show up!" I also don't live alone anymore and live back in town where friends/family are, so I'll have people who can try their hardest to keep me awake enough b4 the study (no sleeping 26 hrs again damnit)
He took me off Adderall (side effects too much now) and gave me a script for Nuvigil... however, my insurance wants prior authorization.. ugh. So now i get to wait a few weeks while i pray he is gunna be convincing.
heh He also was very worried about me driving home after the appt (i worked all night the night before and was literally falling asleep before he walked in) - he offered me coffee and suggested i take one of my adderalls Lol.
whew sorry this is so long..I'm just a bit excited about it all =) (except for having to go off desipramine/stimulants again and having another sleep study lol).
YAY FOR AWESOME PORTLAND LEGACY SLEEP DOC! =-)
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
Best of luck to you with your new doc, keep us posted how your study goes and what your treatment plan will be. Hugs
Well insurance approved Nuvigil.. but my copay is $124... I printed off the thingy that some folks on here told someone about on the website so I got the first month free.. but my copay will still be pretty high... I've taken it twice and i don't notice a big difference.. or its a short lived difference... he started me on 150mg so that may be why? I work this weekend so that'll be a big test... esp with my 12 hour shifts.. I think I'll be calling the office on Monday and asking for a suggestion cuz Im pretty sure I'm gunna be need more.
It's the Caring Voice Coalition and they help PWN pay for their medications. You have to fill out an online app, it was very short and easy. Within a matter of days I had a decision and I pay nothing for my Xyrem. I bet they will help. They are a great organization!!!!