Quick Links
About MyNarcolepsyTeam
Powered By
I've Had A DX Of Narcolepsy For Over 10 Years. I've Never Just "fallen Asleep. "
Started out on Vacation 2 weeks ago and had an episode while driving on the interstate. My sister took over driving immediately. I had a more serious episode while traveling back home, I actually veered over into the other lane of traffic before I snapped out of it. And again, my sister took over driving. (We were traveling from Tennessee to Michigan. )I'm wondering if anyone else has this weird feeling/sensation in their head and eye's before they fall asleep???? That's the most important… read more
Do you mind if I ask you what medicine you take
Does Anyone Else Take 2 Pills A Day And Still Get Sleepy
For Those Diagnosed With Narcolepsy, Taking Stimulants, And Are Affected By The Weight Of EDS, How Are You Coping With The Shortage?
I find myself in a pickle that hopefully my support network can help me with. I have been plagued by the debilitating symptoms of my T1N and cataplexy for majority of my life. After trial and error, I found the best combination of to help with my severe EDS was unfortunately stimulants. For 8 years now, I have been on Adderall (both XR and IR formulations) and to be truthful, it saved my life but complications were axiom.
First, the lack of awareness and understanding within the medical… read more
Does Anyone Else Feel Like Narcolepsy Has Completely Taken Everything Away From Them?
This is exactly how I am feeling at the moment. It is slowly taking everything: socialising, driving, freedom, working, choices in life and the list goes on. I bounce between feeling like this and… read more
Do Traditional Sleep Aids Like Melatonin Help With Getting A Better Night's Sleep For Those With Narcolepsy?
I honestly have found only one thing over the counter for sleep that. Occasionally works is Aleve PM. I was taken off Belsomera for insomnia because it makes my narcolepsy worse but so does no sleep..
Does Anyone Else Have A Really Weird Taste In Their Mouth After Waking Up From A Sleep Or Nap?
Its a bit hard to describe this feeling I have after waking up. I have narcolepsy with Cataplexy and always used to feel refreshed after a sleep or nap, now when I wake up I have the strangest taste (?) or feeling in the back of my throat and it is very odd. I never used to have this and wondered if anyone else does?
Sending you all love and support <3
I've had it since before going to periodontist in 2016, to find it was periodontal disease. It was bleeding gums. When I was going it was because I was getting the free dental from NJ, but I was… read more
Xywav/xyrem, Tornadoes, And A Non-remote Job... What Do You Do?
so for the people that take xywav/xyrem, and happen to live in tornado alley, what do you do when the weather is bad overnight, and you have to work the next day? luckily, im off work right now but the way the recent storms are hitting, if i was working, it would be messing up my medicine schedule and im not lucky enough to have bosses that understand. how do these factors impact you?
As for myself xywav/xyrem was not a good idea for me. I had too many side effects.😵💫
What Is The Most Ideal Time To Take Modafinil/Provigil?
Soon as I wake up. So I can get out of bed. Second one- no later than 3:00pm
Adderall Shortage
Does anyone take adderall for their narcolepsy? I have been it it for years, taking adderall 30 XR in the morning and adderall 20 IR in the afternoon. I was informed a couple of days ago that no pharmacies around have any adderall in stock. My doctor called me in Ritalin 30 mg for me and I can’t tell that I have taken anything at all…I could go to sleep right this minute. Any info or tips would be greatly appreciated! Thanks!
Have you asked if generic and brand name are both out of stock? Short and long acting? A year or so when I went through this they actually had brand name in so my dr. had to send in a new script for… read more
Does Anyone Experience Issues With Poor Circulation?
Thank you for taking the time to tell me this. I am definitely nodding my head in agreement with all you said. I do get very cold and tired at the same time also, I will pay more attention to this.
Sign up for free today!
Continue with Facebook
Sign up with your email
Your privacy is our priority. By continuing, you accept our
Terms of Use, and our
Health Data and
Privacy policies.
