Narcolepsy Support Group

I'm new to this whole Narcolepsy thing and I'm reading as much as possible about the disease since my diagnosis 4 months ago. Ive read so many personal stories and it saddens me how much i can relate to them. I'm over my denial about this,but all the things Narcolepsy is connected to is starting. The worst for me,besides the exhaustion, are the headaches and memory loss,its scary how one thing can mess with your whole life. I guess my question for you all is medication...what has helped you long term? I'm currently on Ritalin 60mgs daily and i cant take Nuvigil,I've tried it twice and both times it makes me feel bad,bad bad,my throught feels like someone is pushing on it and i just feel awful! My doctor wants me off the Ritalin and on something more permanent so any advice will be appreciated,even if it's not about medicine...I'm kinda desperate to be "normal". Yes i know that's next to impossible with this disease but i need to NOT be sleepy/crabby for my kids! I desperately want to be a better mom to them...thanks for any advice you have for me,Kim

I am undergoing further testing for narcolepsy. I am 43 and have a 3 1/2 year old and a 1 year old. I have been searching for answers for over 15 years. After doing research, I think I am on the right path to a correct diagnosis...finally! So for me, it'a a positive thing. The good thing is most of the time it can be managed...and it's not life threatening! I have done a ton of research and I would encourage you to do the same. Lifestyle changes and diet changes can help. I hear what you are saying. I have been so cranky with my kids because I haven't had the energy to cope. Keep trying different medications and research the lifestyle changes that can help. Enlist family and friends to help you out. Keep a positive attitude and remember to grateful for all the positive things in your life. I wish you luck and hope you will be able to manage your symptoms. Oh...and I don't know if Provigil is the same as Nuvigil, but I think it is similar. I am taking the generic version of Provigil and on the 2nd day of the meds I feel like a different person. I was able to go home last night after work and actually enjoy my chilren instead of being all anxiety ridden from being so tired.

Post edited by: tiredmommy43, at: 06/08/2012 11:54 AM

I was diagnosed 15 months ago. I was initially prescribed dexamthetamine 5mg 3 times daily this was increased to 5mg 5 times daily. The dex got me through the day but i crashed everyday immediately it left my system around 6pm. I had my meds changed 5 weeks ago to modafinil 200mg morning and 200mg around 12.30pm. Modafinil is definitely the correct med for me. It has changed my life. I initially had difficulty with the change over of meds but the past 2-3 weeks have been life changing. I have slept better than ever before. I can think clearer. Modafinil has allowed me to feel like I am control of things. It has enabled me to clearly plan and become self aware. I still take naps, one around lunch time and one around 5-6pm, both for 20 minutes which I rigidly set with an alarm. I have now made changes to my life so my life suits my condition. Prior to now I have never understood why I did things I was barely aware of most things around me. I felt like each day was a race to get to the end with out collapsing with exhaution, I finally feel like the race is over. I am 50 years old. I only just realised 2 days ago the reason why I never can remember words of songs is because I have never noticed what the words of the songs are about. I had the radio on and I stopped to listen to the words of the song. I sudddenly realised that I had never done that in all my life. I have a very extensive cd collection, ask me of what I can't tell you, ask me what any of the songs are about I can't tell you, I always knew I couldn't remember the words but I had never realised I never even listened to them, only to the tune. I am under no illusions, I know I will probably still never be able to remember the words but I now finally know why. This is just one examply of how my life is currently unfolding. I have also experienced quite emotional times when memories which I didn't know I had have started to come back. Life is suddenly so easy now, simple things which used to stress me out are just a breeze, thing is I didn't even know why everything was hard, its only when things have become easy that I can't believe how I have struggled to exist and got to now.

Hope I have not bored you too much. I have tried to explain how I feel to a couple of work collegues who I am sure are genuinely pleased for me but I can see they just don't get it. If I had been blind and I was saying I can now see I am sure they could understand that but no one can truely understand the level of continual haze that took over my whole adult life.

Best wishes. Carole