What Aspect Of Narcolepsy Worries You The Most? | MyNarcolepsyTeam

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What Aspect Of Narcolepsy Worries You The Most?
A MyNarcolepsyTeam Member asked a question 💭
posted August 19, 2022
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A MyNarcolepsyTeam Member

As I read all of your answers there are tears in my eyes because I can so relate to everyone. I have given up driving all together. Which really sucks. I maintain my drivers license just in case ... holding on to hope I guess, but I won't drive until I know I can do so safely again. I fall asleep at the drop of pin anytime anywhere regardless of what I'm doing. I try little things to keep myself awake, but sometimes it's just a losing battle when narcolepsy decides it's time to sleep I sleep. The thing is I have severe insomnia and the second my head hits the actual pillow I'm wide awake which is irritating to say the least and if I do actually fall asleep then there there's the sleep apnea and REM sleep disorder to worry about and wake feeling worse than I did if I just didn't sleep at all. So, I feel like I cannot win. I'm constantly walking into things and falling. Someone said narcolepsy is not supposed to get worse, but I agree with them that it does as I know mine is much worse as I've gotten older. Cognitive decline is a thing, injuries are awful at my age I don't heal like I used to and they seem to hurt worse. I work at home as I have my own business (this a plus for me) but it's difficult to stay focused, alert, and awake as I work on the computer and I often crash face down into my keyboard or desktop several times during my work time. I wear glasses and have cut my face from doing this from the lenses. Not to mention it just hurts hitting your face that way. No one understands and everyone laughs at me which I'm a good sport. I'll laugh along because what the hell else am I gonna do. If you can't laugh at yourself then what's left (laughing is a release)? Crying and complaining which I refuse to go there all the time. I try to stay positive, but I have other things going on with my health and I'm in chronic pain all the time so it's really challenging sometimes to stay positive and not really being able to talk to anyone about it so here I am dumping and venting in a forum of strangers that get it. Wishing you all peace and good health! God bless!

posted August 25, 2022
A MyNarcolepsyTeam Member

Ok so the best answer i can give you is to learn how to give dictation to your reports. This way you hold a mic and can pace while you dictate. If need be dictate to notepad and copy and paste into the document

posted August 20, 2022
A MyNarcolepsyTeam Member

watch your breathing. Driving is hypnotic. try deep breathing and singing full out to bring in more air. You should be able to go longer. I drive 300 miles a day. I wrecked 7 cars horribly including flipping 2 where I shouldn't have lived. When I fell asleep on my motorcycle I started paying attention to how I feel before I fall asleep and got off the road before doing so. A lot of close calls. Then I realized my breathing was slowing and my brain was in neutral.

posted August 20, 2022
A MyNarcolepsyTeam Member

Medications constantly becoming ineffective

posted February 27
A MyNarcolepsyTeam Member

But I have a neurologist that say down with me about two years ago. And this what we did. It take generic and provigil the Ritalin is more for alertness and the provigil is for focus. Works wonders 200mg of provigil and 30 mg of Ritalin in the morning between 9 and 10 5 to 6 hours later 30 more milligram of Ritalin between 1 and 2. If the generic of any drug once worked for you but no longer does push your doctor for name brand instead of upping the dose . It does matter

posted January 22, 2023

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