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Does Anyone Else Have Involuntary Muscle Twitches While They Cataplex?
For example when I am collapsing or falling over from laughing so hard my knees get weak but my arms have almost the exact opposite affect and I like squeeze or hit things with my arms / hands. Thank you !
I experience the weak knees, and fear of falling.
Which Meds Have Worked For People On This Site? See Below For Further Details.
What success have people on this site had with the various drugs to treat narcolepsy and cateplexy
* Modafinail did NOT seem to work for me or maybe I did not give it enough time
*Sunosi worked for me somewhat, but, I did not realize it until I ran out of pills and was off of it for several days.
* My neurologist prescribed Wafix. I went to the pharmacy to pick it up and was outraged at the price! The price WITH insurance would have been $653 for 2.5 weeks!! The pharmacy tech told me that… read more
Anyone Hear Of Or On Wakix?
On a recent visit my Dr. added a new drug in addition to 30mg Ritalin 2xday because I'm so sleepy. It's called Wakix. Does anyone in this group take Wakix? If so, any problems with it? What has your experience been ? Sleepygirl4
Took it for about year or so. Nothing bad to say. For me it didn't seem to be very helpful. Then as usual, it seem to have no effect at all
NOT to discourage though! Many say it works well for them!… read more
Diet
Has anyone tried fermented foods to increase their oxerin? If so how much and when do you take it.
My son has narcolepsy 1 and our insurance has denied xywav. The company program can’t help is to pay for the drug. He is already on adhd and ssri
I am desperate to find other ways to decrease his symptoms.
I have never heard of using fermented food to increase oxerin. And that is assuming he still has some left. I eat low carb low sugar and that helps with day time sleepiness.
Is Narcollsy Reversablex
Can it be cured?
Hello, Lisasnead-
After Orexin/Hypocretin (same thing) was discovered in 1998) low levels were tied to the cause of narcolepsy. (at least for Type 1 and secondary) It was shortly found it could… read more
Strange Cataplexy
Dear members
for three years (But only in some periods) I have a strange symptom, My cataplexy has changed; in these periods it presents itself differently it is as if it were repeated many times during the day but without a valid trigger. I can't figure out if my problem is getting worse. Sleepiness is always the same. As far as I can remember I have had narcolepsy since I was 16 now I am 42. My cataplexy has always been of very short duration, I would say a fraction of a second and it involves… read more
I definitely have Cataplexy worse when I have stress!!
I’ve had Narcolepsy since I was a teen and I’m in my 60’s
Do You Ever Feel Like Life On Stimulants Is Some Sort Of Cursed Half-life?
Maybe it's because I've been on them so long they don't work as well anymore but it's like I can't really sleep (nap) but I can't necessarily function either.
Yes! So well said… cursed half-life…my body is exhausted and tired and needs sleep… I feel it in my bones, but the medication is keeping it very much awake. So I am functioning, but I’m tired with… read more
Hi Everyone! Can Someone Explain To Me How A EEG Testing Is Done?
I’m scheduled to have this procedure just wanted to know what to expect for
Hello MariaWikeValdez
I want to thank you for reaching out to inform me about the testing. Again Thank you.
How Would They Treat Sleep Paralysis Associated With Narcolepsy?
For years now I have been having symptoms of Sleep paralysis and it is getting worse.I am being put on CPAP for the upteen time I am being treated for Narcolepsy on and off diagnosed 11 years ago;presently now on treatment Treatment for depression over the last 20 years has failed.Don't know what to do with myself very frustrated to lead life like this
I agree with the stimulant comment. I've found that sleep paralysis is a lot easier to deal with during the day. I absolutely will not sleep between midnight and 6 am. Unless I have no choice. Always… read more
Does Anyone Take Sunosi To Treat Their Narolepsy. If Yea, How Does It Work For You? I Was Recently Prescribed It About Three Weeks Ago.
Not having the best results, definitely need something better. I still get quite tired by lunchtime and often have a hard time not dozing off. What do you take now and does it work? Any helpful tips… read more
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