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Real members of MyNarcolepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

How Do You Know You're Still Too Tired?

How Do You Know You're Still Too Tired?

Hello everyone
After reading so many stories, it seems no one ever really feels awake even with medication. Medication helps, but it never seems like enough
I am frustrated, probably like many of you, with my medication. I know it's better. I am not having sleep attacks as often I used to. I realized that early on in taking the meds. I was still falling asleep around 11:30 though so I started taking a second dose at 12 (so I could have another 2-3 hours) and I just feel so frustrated. I'm out… read more

posted May 30, 2021
A MyNarcolepsyTeam Member

Yes...struggle you may...find some sport or exercise to get your blood moving...What you consume effects everything...When you feel sleepy..walk around...When U was working I used to excuse myself to the bathroom..until the sttackpast..The super thought my bathroom breaks were to long...I just kept doing it until zi lost the job. Dr Amen has studied the brain in depth..You can take a Spect Scan
(this shows where the blood is going and...if there is no blood the brain is out of touch....It can not function without blood....
...

posted September 8, 2021
A MyNarcolepsyTeam Member

I was diagnosed over 30 years ago and have been on several different medications. The one thing that all of my doctors
over the years have said it that the medications aren’t meant to take the place of naps, but to help keep you alert between them. I used to feel embarrassed when I needed a nap. I used to sneak off so no one would know. Now I have accepted that this is part of who I am and I have to live with it. It is frustrating to always feel tired and not feel like the meds do enough. You are not over exaggerating…you have a legitimate disease and you are doing the best you can to learn how to live with it. Beat of luck to you.

posted June 6, 2021
A MyNarcolepsyTeam Member

I highly recommend you see you primary physician for normal ailments and seek a neurologist for your NARCOLEPSY! I remember when I finally was diagnosed, my neurologist said I was a classic textbook case... it normally takes 10 years to get a diagnosis. He explained that in med school the chapter on narcolepsy is very small. So general doctors knowledge base is equally small. Regarding your medications, if you're nit getting what you need (wakefulness) then they're not working for you. Don't be afraid to tell your doctor that. Neurologist focus on the brain and the diseases/disorders tgat affect the brain. They're far more knowledgeable in the medications to prescribe for this disorder.

posted June 10
A MyNarcolepsyTeam Member

You are not alone. My medication barely works.

posted May 23
A MyNarcolepsyTeam Member

I wouldn't be too shy about talking to my Dr. If they don't understand
You find one that does. It's work but it's worth it. Please don't worry too much about what others think. You
have walked a mile in your shoes, they haven't. Love Ya Buddy, hang in there!

posted June 8, 2021

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