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Narcolepsy

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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 also thinking wow our am getting old but I am so energetic but I fell asleep on escalators and I was in a terrible car accident because I fell asleep! My doctor told me there’s no way I had… read more

posted 6 months 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:

Before I was actually diagnosed, I can remember being at work and having the feeling so strongly that I needed to shut my eyes for a little bit (take a nap.) I thought they were blowing something in… 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:

Try to get a sleep study anyway. I had insurance and they would not pay for it approve an MSLT which is the two studies to determine if you have narcolepsy or some other sleep disorder. They kept… read more

posted 4 months 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:

Self medication is the only thing that works for me. My Doctors won't prescribe anything but Armodafinil.
Its a joke.

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 6 months 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:

Hi fellow Narcolepsy sufferers. I've been known to have a few prior to driving,7 before I was diagnosed with this disorder. Hard to stay in my lane....lve since given up the drinking and my Dr. took… read more

posted 5 months 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 6 months 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:

Yes my husband doesn't believe l have it .Even do l was diagnosed with narcolepsy he thinks l am just resting and being lazy

posted 10 months ago

Treatment For Narcolepsy Without Diagnosis

Treatment For Narcolepsy Without Diagnosis

Has anyone ever in the past been told by a doctor they think you have narcolepsy and put you on meds for narcolepsy. This happened to me years ago. Just wondering if anyone has ever been diagnosed with narcolepsy with a physicitrist when you told them all of your chronic health issues . Mine ask alot of questions about all my disorders and concluded that I did have narcolepsy in his judgment because as a child the mental issues I had up until adulthood was linked to narcolepsy. Physicitrist if… read more

A MyNarcolepsyTeam Member said:

Big..Get the diet straight..Some foods bring on attacks..If that is the case check with an allergist.

posted 3 months ago

What Is 'team Building' For? Do I Need To Do This?

What Is 'team Building' For? Do I Need To Do This?

I don't know - selecting people for my "team" seems playing favorites with people I don't know. That seems weird to me.

A MyNarcolepsyTeam Member said:

Hi @A MyNarcolepsyTeam Member! I'm a Community Manager on the MyNarcolepsyTeam Support team. While I don't have narcolepsy myself, I'm available if you ever have any questions about how to use the… read more

posted over 1 year ago
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