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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.

Need Reassurance

A MyNarcolepsyTeam Member asked a question 💭
Oklahoma City, OK

I was diagnosed in January. I'm having a hard time understanding how this happened. My anxiety tells me that it's not narcolepsy at all and something far worse. My doctor did the extensive and expensive sleep test on me in Dec. 2021 but I just still don't understand. Also, I was reading that having narcolepsy can make you wake up all the time during your sleep at night, I don't have that problem AT ALL. Once I'm asleep for the night, I'm OUT. Which is concerning because I have two small… read more

August 17, 2022
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A MyNarcolepsyTeam Member

Excuse me, (FollowingFiveStar) but I feel like your comment was completely unnecessary. We are not here to determine who is struggling more than the others. We are here to vent and find others who may be struggling with the same things and find comfort in one another. If I wasn't as stronge in my faith as i am, that comment would have made me feel bad about the way that I perceive things and the way I feel about my diagnosis.

September 7, 2022 (edited)
A MyNarcolepsyTeam Member

FollowingFiveStar, but in your original comment, you said nothing to help me? You basically said that I'm not as bad off as you so I shouldn't be complaining. Again, that is not necessary to say. If you have USEFUL information that may help me in my life, than I would love to hear it. I like that you said there are in person groups for narcolepsy, I will have to look them up and see if there are any in my area.
Hope you have a great weekend!

September 10, 2022
A MyNarcolepsyTeam Member

Yes, they tested me for sleep apnea twice and that wasn't the problem. My dad has sleep apnea so I knew that wasn't the problem when starting this journey. Lol

September 7, 2022
A MyNarcolepsyTeam Member

Narcolepsy is not normal but I realized that it could have been caused from a lifetime of sleep apnea not being taken care of. I went till 48 years old without my bipap machine. I honestly don't know how I survived that long without it. Have you also been tested for sleep apnea?

September 7, 2022
A MyNarcolepsyTeam Member

Normal? Probably not, but how fortunate you are to know what you have before you have set career goals or are into upper level executive positions. Holding it together with young children who will become teens is challenging enough!

If you want to have something more serious...many of us feel their is no bigger or worse illness or condition than Narcolepsy, because it is so completely life- altering!

September 7, 2022

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