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Re: important question

Posted by ExhaustedMom on January 31, 2002 at 06:14:00:

In Reply to: important question posted by Safrin on January 31, 2002 at 04:12:18:

Hi Safrin. No, you're not going nuts. There are varying degrees of symptoms for everyone's own personal N. I, for one, am very thankful to be one who never falls asleep clear out of the blue. I have fair warning of the oncoming need to sleep, and I can combat it long enough to get to a safe point in what I'm doing, then crash for a while. Or, I can continue to struggle to stay awake, if I'm really needing to concentrate on what's going on. I find it easier to stay more functional having a job(part-time) that keeps me in constant motion. Don't ask me to go to an all-day seminar, though, I've been known to lay my head on the table and drool! :o) I don't have the cataplexy symptom myself, but experience some really strange HH's and occasional SP. When I'm super-tired, last night for one, I can't spit out the right words, either. I asked my husband to hand me my t-shirt, but it came out TV! And he insists that I asked him to hand me my teeth before I asked for my t-shirt! We had a good laugh about that. With medication- I take Ritalin SR 20 mg, 1 in the AM, and one sometime between 12-2PM, I lead a fairly functional life. I have 3 kids, 10, almost 7, and 3, I work PT as a nurse in dialysis(keeps me moving), and I do volunteer stuff with the girls' dance academy. I still have my days where I'm too exhausted to cook, but, hey, that's what pizza delivery is for, right? I pick my battles, and if I can't do it today, I don't get upset about it. The program you saw gave you the extreme Narcoleptic patient with severe symptoms. Except for the people with the severe cataplexy, you may never know outwardly who has N or not. The only way to know for sure is to go in for your sleep study with the MSLT. From there, the doc will know how to treat you. Who cares what they label it? As long as they can help. For the record, my doc diagnoses me as ideopathic hypersomnia only due to the fact that I don't have cataplexy, and he said why label it N without cataplexy unless you have the full blown N? He realizes all the things that can come along with the full blown N diagnosis for me, driver's license problems, the question of my nursing license, etc. He said to me "Why label it any further and chance anything, when we can treat you the same way and not jeopardize changing your life?" I fully agree. Just help me, doc! Be patient. I feel a million times better now that I have the Ritalin SR. Don't worry about which label they give you, just make sure no matter what they call it that they will help you feel better. Finding what works best for you takes some time and effort. It won't be instant, but trust me, it will be worth it. You're not going nuts. We all felt that way before help. Try to relax until you see the specialist, I know stress makes my EDS worse! Hang in there, and keep us posted!

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