There are many frustrations with Narcolepsy, but not being able to THINK is the most important complication of this condition for me from a quality of life standpoint. Can anyone relate to this and share their experiences (describe your "brain fog" sensation, what makes it better/worse, conversations/responses from doctors) and what medications/doses work best for you (prescribed or the desired dose)? Any lifestyle changes?
I’m glad Adderall made a difference for you!
I totally agree on the THINKING part. Before I went on stimulants, I really thought I had the beginning stages of Dementia. I'm not exaggerating. When I started the Adderall, I knew immediately that I did not have Dementia because when Adderall is really working for me, I can think at levels that are amazing! It's absolutely wonderful!
I thank God for a great doctor and the invention of stimulants. Adderall doesn't always work, but my life is so much better!
I find I'm easily distracted and have trouble concentrating, where once those were strong points for me. And I'm never sure if memory problems are due to age or my narcolepsy.
My brain fog has gotten worse recently since I switched off Sunosi. I describe it as a decrease in mental acuity: my processing speed is reduced, I notice fewer details, and I make blatant mistakes. For me, it's a bit separate from sleepiness since I can have brain fog without needing a nap (i.e. in the first hour of work in the morning). I haven't found any good solutions yet. Best suggestion is to make it through the day and hope for a better tomorrow.
I agree that it's one of the most important symptoms. Incredibly demeaning for me internally when I mess up basic math or make elementary school grammar errors. Makes me feel like less of a person than I was before.
HEY - For me and my ... life ... Narcolepsy is the Most Debilitating illness/disorder/syndrome/condition I have ever experienced! I.E.
Organizations to which I belonged:
Arts Council of Imperial Calcasieu (5 parishes [counties]) - resigned; season ticket to my college Alma Mata's football home games - stopped going; Local photo club - quit going; Local art gallery member - no longer as active, then - dropped out. The list goes on. Nighttime meetings would require my wife or friend to take me to the meetings & retrieve me at the meeting's end.
If I sat still for 4 minutes +/- I would fall asleep, and friends - I SNORE LOUD. I fell asleep at a college football game while the crowd was yelling b/c our team scored. I feared I would fall out of my seat, hit the person in front of me, knock that person out of his/her seat ... and dominos all over again! Not only would that be Really embarrassing for me, but also the people affected could get hurt ... some seriously hurt!
So - yes, very disruptive, not only for me, but this disrupts the whole family routine(s). I have a whole bunch of illnesses, syndromes, etc. that render me "disabled". I keep waiting for improvements ... just adding more maladies.
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