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Narcolepsy

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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.
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Ok Was It A Shocker Being A Adult Finding Out You Had Narcolepsy?

Ok Was It A Shocker Being A Adult Finding Out You Had Narcolepsy?

I was dynose for Narcolepsy at a young age. I had to deal with it and on my own learned how to help myself. When in my 40tys I found out What I had and got on med. I would say being young in some ways coping was a learn g thing not saying it's easy young or older , but for some reason I would think it would be crazy finding out older. What you think - the ones that got it later in the years?

A MyNarcolepsyTeam Member said:

I was in my 40's when diagnosed. I kept telling my Dr. Something is wrong with me because I'd wake up while driving and be an inch away from hitting a parked car. This would happen so often. Then I… read more

posted 4 days ago

What Analogy Would You Use To Help Someone Understand What It’s Like To Live With Narcolepsy?

What Analogy Would You Use To Help Someone Understand What It’s Like To Live With Narcolepsy?

A MyNarcolepsyTeam Member said:

A lot of well meaning people will tell me I dont exercise enough, adapt a healthier life style. Did all that but then I became overwhelmed with life events recently. I used to fall a lot cataplexy, I… read more

posted 3 days ago

Do Stimulants Help?

Do Stimulants Help?

When I was first diagnosed beginning of high school, my doctor had me try a couple different treatments. One of them was Ritalin, but I was wary of pills and didn't want to go that route. College has really been testing my limits, and I'm starting to fall behind. Do stimulants help any of you guys? Which kinds help the most? Do side effects outweigh the pros? Thank you!

A MyNarcolepsyTeam Member said:

Nothing has worked for me!

posted 8 days ago

Did Anyone Else “diagnose” Themselves First?

Did Anyone Else “diagnose” Themselves First?

Has anyone else figured out that they had narcolepsy before their doctors? I always have trouble getting my doctors to truly listen to what I’m saying, and for them to not say that EVERYTHING wrong with me is because of my anxiety/mental health. No one would listen, so I talked to my psychiatrist and told HIM I was pretty sure I had it, told him my symptoms... HE referred me to a sleep specialist, I did the studies, and now it’s confirmed. I’m 32. I’ve been having symptoms since I was a kid. 8th… read more

A MyNarcolepsyTeam Member said:

I self-diagnosed myself when I was in 6th grade. I remember not being able to stay awake during any of my classes. My friends and the kids that I went to school with had made fun of me for… read more

posted 6 months ago

I Get Stuck In My Sleep. It Scares Me!

I Get Stuck In My Sleep. It Scares Me!

I get stuck in my sleep. I can open my eyes and I can see around the room but it's like I'm being held down and my breath is being taken from me! I try to move my body, sometimes I think I am! when my friend stayed over I was trying to kick her cuz I couldn't wake up even though my eyes were open and I could see the room I was being held down and my brother was being taken it was hard to breathe the hardest part to say, I'm going to see right now. sometimes it feels like I'm being held down… read more

A MyNarcolepsyTeam Member said:

Wow.. so similar to my experiences, down to details.. it's crazy! If I didn't know better I would think i wrote this post myself lol on my page you'll see my post about pretty much the same thing… read more

posted 5 months ago

Best Days

Best Days

I want to know about one of your best days you have had with your narcolepsy. Tell me how you felt, who you were with , everything.

A MyNarcolepsyTeam Member said:

I hate to answer this question because my BEST DAY is Thursday is my first day off I sleep the whole 24 hours my children are grown I have a dog I do take her out a couple times but I do not get out… read more

posted about 1 year ago

How Does Narcolepsy Impact You Emotionally?

How Does Narcolepsy Impact You Emotionally?

A MyNarcolepsyTeam Member said:

Lately it seems like my Narc has gotten worse since I was diagnosed with ADHD. I am on my fifth ADHD med and I am stable there. However, I doze off a LOT more than before so I guess here we go again… read more

posted 6 days ago

How Well Does Modefil Or Provigil Work For EDS And /or Cateplexy?

How Well Does Modefil Or Provigil Work For EDS And /or Cateplexy?

A MyNarcolepsyTeam Member said:

I wish you the best of luck with med school. I worked 7pm-7am for 30 years as a nurse & never felt rested. I wasn’t diagnosed until I had been on days for 5 years. For nurses in the hospital, taking a… read more

posted 3 days ago

Does Anyone Here With Diagnosed Narcolepsy Also Have Fibromyalgia? What About Adult ADHD?

Does Anyone Here With Diagnosed Narcolepsy Also Have Fibromyalgia? What About Adult ADHD?

A MyNarcolepsyTeam Member said:

I have fibromyalgia, chronic fatigue syndrome, Graves’ disease, depression and lot of other stuff wrong with me! Take lot of meds for everything! Have sleep apnea. Use Cpap and oxygen at night . But… read more

posted about 1 year ago

Does Anyone Else Deal With People Who Don't Believe Narcolepsy Is A Real Disease?

Does Anyone Else Deal With People Who Don't Believe Narcolepsy Is A Real Disease?

I have been diagnosed for almost 3 years now and I still have family members that believe I'm just lazy. On my bad days I can sleep 19 hours a day or more. If I'm cold I go into hibernation mode and can't wake up til I warm up and some of my family act like I chose to sleep. Luckily my husband isn't like that. If y'all had similar experience how did u deal with it?

A MyNarcolepsyTeam Member said:

Absolutely! In fact about 2 months ago I could feel an episode coming on then it came on much faster than any other time so I had to pull off the freeway into the emergency Lane. Mind you I did not… read more

posted 3 months ago
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