Hi everyone. I'm 48yo and was diagnosed with narcolepsy with cataplexy about 3 months ago. I almost feel guilty for saying this but I'm doing great! I was started on xyrem and nuvigil and it has changed my life. I feel like my old self again. I have never slept well but there was a definite onset of the daytime issues about 5years ago. I had a hard time convincing the medical community that I was sleepy not fatigued. There's a difference. But when I started falling asleep in there offices they took notice. Anyway the meds are working great and I'm living life again. I have the most wonderful husband in t he world and our relationship is better than ever. We actually went to the planetarium last week and I was able to enjoy the show instead of struggling to stay awake. At first I was really bummed out because all the stuff I was reading on this and other support sites made it sound like this diagnosis was a death sentence but I don't feel that way any more. Life is good and I'm going to get back to living it with my eyes open!
never feel sorry or guilty for feeling good! medications react to everyone's body chemistry differently. what works for one, might not work for another. I am so happy you found something that works well for you! Please keep us updated on how things are going. We are here for you!
Awww thanks! Today was the first time I thought to myself "I've got my edge back again" this was a really great day and nothing unusual happened. I just felt great.!!
Your post gave me hope! Thank you. I was diagnosed about 8 months ago and it sure feels like a death sentence. My life is so "hard". I trudge through it half in a daze its horrible. I want to feel like you do which is the old me. Oddly enough after my hysterectomy is when my narc. became apparent. So tell me why it took so long for them to diagnose you? For me it was because I suffered from such severe anemia that the exhaustion was always explained "its the anemia" but after my hysterectomy which did fix the anemia I felt like death and never recovered. Ive lost 3 years of my life b/c of that stupid decision to have a hysterectomy.....I cant get those years back but I want to feel like Im human again not the walking dead. Im afraid of the Xerym medication can you tell me how it makes you feel, how it helps and how bad it is? Im a single parent, Im afraid to take anything that is going to put me out like that in case my child needs me. Any help would be appreciated!!!!!!!!
It took so long because of other medical issues. I have hypothyroidism and rheumatoid arthritis so the doctors wanted to blame the fatigue on that. I couldn't make them understand that sleepy isn't the same as fatigue. It wasn't until I started complaining of falling asleep while driving that they took me seriously. Even then it took a year of telling my doc about it before he referred me to a sleep medicine specialist. The xyrem is a little scary. I don't know if I could do it if I had young children because you are really out. There are nights that I sleep through the alarm for the second dose. I think you will need to let your doc know that you want to go very slowly with the dose titration. Explain your concerns about your child. But honestly the xyrem makes me feel great. I wake up feeling rested which was a new thing for me. The drug is metabolized very fast so even if I'm still groggy when I get up it wears off quickly. Best of luck to you. Please let us know how your doing.