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How Do You Guys Get The Most Out Of This Site? I See A Lot Of People Don't Come Online Frequently And I Need Support With The Functionality
This site is very awkward and frustrating to use (for me) and navigate around in, as well as having huge, empty, space filling areas of…really, nothingness. I’m sure whatever professional website… read more
My Doctor Prescribed Wakix For Me Because Of My Narcolepsy And Cataplexy. My Insurance Company Is Covering It, Thank Heaven.
Is anyone out there taking Wakix? Has it helped you? My concern are side effects, etc. Let me know what you think of it. Thanks!😴
Wondering About Any Results / Opinions Of The Medication Xyrem?
I am considering asking my doctor if/when possible I may try this medication. First wanted to find out how it has worked for anyone who has tried it.?.
I wont try it. The warnings alone scared the crap out of me.
Getting Put On Vyvanse For My Narcolepsy. What's Your Opinion On It?
Does Anyone Else Have Tachycardia Along With Narcolepsy?
I’m on modafanil & Ritalin. I had been put on a beta blocker for an arrhythmia years before. Haven’t had any problems.
Anyone Else Having Issues With The Adderall Shortage? Anyone Else Noticing A Difference With The Different Brands And Manufacturers?
Omg! Yes! Last month I got mine from Walmart because nowhere in over 109 miles had it and it was like I was taking nothing !
What Narcolepsy Symptom Do You Have That You Didn't Expect?
You are def not alone. I gained a lot of weight too,150 lbs. I've been going to the gym consistently for like 10 months now. I have lost 45 lbs. It is tough to lose weight specially as we get older. I… read more
Are There Any Resources To Afford Sleep Study Without Insurance? Has Anyone Been In Legal Trouble Due To EDS And Narcolepsy?
The university by me charges $6000 for both the nighttime and daytime sleep study. I am still paying off my neurologist appointment which was over $1000 and just reaffirmed my ADHD and checked my reflexes... 20 min, in and out. Very disappointing.
I needed the sleep study for court. I am now looking at outside areas (I live in Chapel Hill NC near Raleigh) that might offer sliding scale.
I do not want to go on disability by any means. That would hurt my court case to get my daughter home. In… read more
Hi Irene
I’m sorry your dealing with all this…
I have been misunderstood my whole LIFE, to the point my own mom got rid of me.
I’m not sure? but did the Court say you need the study
IF so… The… read more
How Many Injuries Have You Had? And Most Bizarre Behaviors
I always thought I had something wrong with my brain based on my bizarre accidental injuries, guess narcolepsy was always the cause.
Here's my list
1. Forgot which side of the road to drive on
2. Burned myself many times with clothing iron, flat iron.
3. Pinched finger badly while putting umbrella down
4. Slammed hand in folding table
5. Forgot to put car in Park multiple times
6. Broke my finger and split it down to the bone with electric hedger (finger was in half at the top)
Bizarre sleep… read more
I fall ALOT! Fallen out the bed while asleep numerous times and got hurt. Most of my falls are the result of cataplexy and sudden sleep episodes.... Fallen outside countless times busted up knees… read more
Any Advice For Coming Off Medication?
Wow! I feel that Ryan B really nailed it his response to you. While some may look at his words as negative, I understand exactly what he is saying. I was a single Mom when diagnosed, working full… read more
