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.

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Sleep Disorders
/ Narcolepsy Support Group

newly diagnosed with narcolepsy

emma.keller
emma.keller

Hi everyone! 


I was diagnosed with type 1 narcolepsy about 6 months ago and have been struggling a lot. I have always had excessive daytime sleepiness, terrible mental fog, always forget where I put things, and now I am starting to forget conversations. I will have some good days then really bad days. There is no consistency with narcolepsy which is starting to impact my social life and school. I have tried a few medications and have settled on Sunosi for now. I still feel as though my symptoms are increasing and my doctor says that the next medication would be Xyrem. I have heard both good and bad things about it and I am very hesitant to start Xyrem. Very few people (if any) are educated about narcolepsy and how controlling it is. I feel very alone in my struggles and do not know how to deal with my symptoms. 


I was hesitant to join a support group but I think it can be helpful to know I am not alone in this. If anyone has any suggestions about medications or lifestyle changes I am all ears. 

Secouya
Secouya
Hi Emma, I was diagnosed with severe sleep apnea over a year ago. I suspect that I have narcolepsy because even with the CPAP I nod of all day and have brain fog and memory issues as well. My doctor prescribed modifinil but it really doesn’t work well for me. I am afraid to drive if I can’t stay awake.

I hope that you can find a solution that works for you. Best Wishes.
MaryContrary
MaryContrary
My Mom is just like you two. But I cannot get any medical people to listen.
brianwolfe
brianwolfe
Narcolepsy is a lifelong health disorder, but it does not usually worsen as the person ages. Symptoms can partially improve over time, but they will never disappear completely. The most typical symptoms are excessive daytime sleepiness, cataplexy, sleep paralysis, and hallucinations.
jellenc
jellenc
brianwolfe, although it is commonly said that narcolepsy is not progressive, any narcoleptic that has had the disorder for more than a few years will typically disagree. Symptoms do sometimes change over time, but rarely do they improve, unfortunately.
specter
specter
Hi Emma,
I was diagnosed with narcolepsy at 47 in 3/21 and have had symptoms since I was 14. I joined a support group through Wakeup Narcolepsy (Hey Peers) and it has been a huge part of my support system.

Xyrem is high in sodium, which can increase heart problems. XYwav is in the same group and has less sodium so that may be an alternative? My doctor prescribed me this, this week and I'm hoping for a miracle.

I take 36.5 mg wakix and 250 mg armodafinil in a.m. Wakix is interesting because it addresses histamine levels in the brain, which promote wakefulness. I take trazadone at night and wear CPAP for sleep apnea.


I've taken depression meds for years and was treating that to the point of hhopelessness, so narco diagnosis had been a huge eye opener.

Best of luck in your jjourneyf my friend
daBee
daBee
Just as a note, cataplexy is NT1, not NT2. The latter is less known than the first. I'm currently undergoing tests for NT2, which I think I've had for over 45 years. It's truly strange, but you gotta fight through it. I'm thinking stress/anxiety plays a role.
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