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New to this....

Posted by kelley_asher on August 04, 2003 at 01:26:18:

Hello, I have just found your wonderful forum and I think it is great! I have just recently been diagnosed with narcalepsy (June 20?) although I realize I have had it for about 15 to 16 years. I'm 29 now. I have so meny questions but there doesn't seem to be a whole lot out there. So please bear with me if I ramble.

My sleep doc has put me on a combo of provigil and ritilin and told me to play with the dosages until I found a good range for myself. I think he got tired of my fustration when the provigil would work great and then seem to quit after about a week. My body builds up tolerance to most everything very quickly. I have found that taking 400 mg of provigial in the morning with 40 mg of ritilin works pretty good as long as there are no major upsets and I don't overwork myself. Are these dosages safe? What should I NOT mix with these? I already found out that Benydrill is very bad to mix with this combo! Do I need to worry about building up a tolerance to these to?

Does narcalepsy get worse as you get older? It seems like every year, for me, it has gotton progressively worse. But then, I did not know that I had it and it was untreated. Even with medication and good sleep I sometimes still get rubber limbs and just feel too tired to do anything. I hate that. I feel like I'm lazy. I feel guilty that I can not keep up with the house and kids and work. I know that I am not superwoman but I should at least be able to keep up with the basics.

Is depression normal? I was diagnosed with that alonge with dyslexia about 12 to 13 years ago. Does it tie into that?

Is confusion normal? It gets to the point where it gets hard to speak sometimes because I have problems trying to put a sentence together. Or when I'm driving I'll get lost for like a minute or two.

Is having no memory normal? Both long term and short? I will forget entire events that happens only yesterday. Sometimes they will be vauge recollections.

I did have car accident a year ago, before I was diagnosed, because I fell asleep at the wheel and hit two trees. About 6 months after that I got hit by someone else who fell asleep at the wheel (yes I found that pretty ironic). Could some of these symptoms be head trama or is my narcalepsy getting worse? I hate to ask a loaded question but, how much worse could it get?

The more I look at my family the more that I can see that narcalepsy runs in it. I'm fairly certain my brother, sister and father have it though the are untreated and refuse to treat it. Are my children going to be narcaleptic? I already had 2 of them in to get a sleep study and they both had apnea. The other two I know have it to. Could they get both and have a double whammy?

(sigh) wow. what a introduction. I'm sorry to ramble on but after searching so my and only finding fuzzy and vague answers I am at a lose on what else to do.

Thank you for putting up with my rant. Any information that you might have would be greatly appreciated.

Thanks

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Archived Narcolepsy Forum23 viewing only. To post a new topic go to the Narcolepsy Forum Homepage

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  • Sleep Deprivation due to Sleep Apnea and insufficient sleep are common and can present as insomnia, narcolepsy, or idiopathic hypersomnia. In infants and children sleep problems commonly present themselves as ADD or ADHD.


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