I was diagnosed with Narcolepsy shortly after my first son was born in 2008. Before I was diagnosed I struggled for years with sleep paralysis,cataplexy and the constant daytime sleepiness. I could barely function in school I was always falling in and out of sleep in class. This made my teachers and my parents think I was just lazy and a trouble maker rather then try and figure out what was going on I was put in to special ed classes. Still had no idea what was going on with me.I wish more people had been aware of Narcolepsy when I was in school it would have changed my life. Rather then drop out of school I might have finished . I have come to terms with my narcolepsy I still struggle with my symptoms but at least now I know what it is and that I'm not going crazy. I only wish people with Narcolepsy got the same understanding as anyone else with a rare disease. I am currently not on any medication I hope to be soon just got a new neurologist. I was on dextroamphetamine, Provigil ,Nuvigil I hated provigil and nuvigil the cost of the medication was high and i didn't get any relief from my symtoms and the dextroamphetamine made me feel jittery witch wasn't that bad it worked better then the other two medications. Thanks for letting me share
Thanks for sharing your story, James. I'm glad you are here.
Hello James and welcome!! I didn’t like provigil or nuvigil either. Didn’t do much for me either. I’m now taking adderrall and it helps but my hair has thinned and my face is now oily…but without it I don’t think I would be able to work.
Welcome James Thanks for sharing your story.
Welcome, James! I read a little about the group almost daily, and feel supported by the kindness and shared experiences here. Hope you’ll like that, too.
Welcome James. I agree that Provigil sucks- it made me feel like a animated corpse. I was awake, but not functioning or feeling. Nuvigil had better effects for a bit. Now I take Ritalin which keeps me awake but my neurologist has referred me to a Psychiatrist because he feels I need a higher dose because I also am very ADD.
No one seems to mention "Venlafaxine" it's a anti-depressant but the side affects are they help with a lot of the Narcoleptic symptoms as well as the Cataplectic . I've tried everything including a trial on Xyrem (which was fantastic but can't get funding) . This Still gives me all the symptoms but only when I'm really tired . Provigil gave me migraine not good at all .
When i was first diagnosed they had me on wellbutran (not sure of the spelling) and dextroamphetamine one for day and one for night as my doctor put it then they changed from wellbutran to busebar I was on dextroamphetamine for 3 years and it was great they he changed it to provigul then to nuvigul haven't been on any meds for almost 2 years, I have a new neurologist and wants me to go threw the whole process of being diagnosed again I don't get it but he is the doctor and he's also giving me a genetic test to see if i'm genetically predisposed to having narcolepsy I also have cataplexy which hasn't been to bad as of late.
My diagnoses was at the age of 32 , and after as I said , I've tried everything available lol . This is the only thing I can get so guess I'm stuck with it . The system is a little different over here so unless I inherit or win the Lotto I'm in a daily guess at what sort of day I'm gonna have .
James I tried to switch Dr early this year and the new sleep Dr that I found wanted to do the same thing to me, take me back to step one and do a sleep study on me again He also wanted to stop all my meds at once and told me I should just overdose on caffeine. I sat there and thought about all I had been through and how I bad I felt before the meds and I told that Dr that I don’t have time for that and he was crazy if he thought I was going back down that road and stopping my meds and I walked out that office and went back to my old Dr. The reason why I was seeking another Dr in the first place is because I felt like my Dr was to busy and never had time to see me when I was having problems. But after I spoke with my Dr and told him how I felt I have his full attention now and he always makes sure I’m OK thank God. Good luck to you with your new Dr, and I’m also on dextroamphetamine twice daily, I’ve been on it for 4 months now and so far so good.
I wish i didn't have to go threw all of it again. I just moved back down to Florida from Michigan and my last neurologist past away last June so i think aside from the notes and the test results he might have wanted to talk to my previous doctor about my condition. Since I'm going threw it again maybe they can see if anything has changed.Does anyone know of any support groups in Florida cant seem to find any online. would like to meet others with Narcolepsy I see some other states have them.
I can’t find any spey groups here in Georgia where I am either, but I will say joining this chat had really helped me alot being able to talk with people who truly understand what I’m going through because my family don’t even understand alot of the time how difficult it is for me on a daily basis battling this disease.