Connect with others who understand.

sign up log in
About MyNarcolepsyTeam

Narcolepsy

Questions + Answers

Don't see your question? ask question
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.
View:

I Just Have To Let You Guys Knows This'

I Just Have To Let You Guys Knows This'

I am so sorry for all of us with Narcolepsy plus a lot of us come with many other health issues. I think we have gone through a lot and if only the ones that don't get it would only go a day in our shoes. My friends here I would like to say I am proud of you getting by and doing what you have to to complete your days. This is our life and we have to except how difficult some days can be. Do you know we don't no how strong we are until we have to be. So fell good inside because I know you guys… read more

A MyNarcolepsyTeam Member said:

I am thankful that after being diagnosed with NwC, I got educated and made changes to be able to function. Thankfully, I'm a fighter and I am no stranger to God's love ❤️ for us all. After many… read more

edited, originally posted 10 months ago

I Just Started On Provigil/modofinal After Being Off Of It Several Years. It Has Helped.

I Just Started On Provigil/modofinal After Being Off Of It Several Years. It Has Helped.

A MyNarcolepsyTeam Member said:

I take Cymbalta for my depression. Not only does it act like a stimulant, it also reduced my fibromyalgia pain by about 90%. I do need to take propanol, a blood pressure med, to stop my racing heat… read more

posted 7 months ago

Possible To Have Insomnia With Narcolepsy???

Possible To Have Insomnia With Narcolepsy???

This past year I have come to realize that I have such a hard time getting myself in that mind frame to “go to bed”. Don’t get me wrong, it takes me only minutes to fall asleep, it’s just a matter of settling down to go to bed. I have tried no caffeine after a certain time, to no cell phone/computer use but I just have a hard time settling down. I have read where insomnia can occur. Does anyone else have this issue and if so, what medications (if any) can help this??? I do plan on talking to my… read more

A MyNarcolepsyTeam Member said:

My mind resists going to bed. I usually am up until 1 or later. It seems silly, just go to bed, but I resist consciously or not or or get downright panicky if I have had a really bad dream the night… read more

posted 7 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

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

Do Any Of You Have Bad Automatic Behavior, And How Do You Deal With It ? What Combats It ?

Do Any Of You Have Bad Automatic Behavior, And How Do You Deal With It ? What Combats It ?

Automatic behavior is when your doing something and go into REM for a period ,when you come out, you can’t remember what you did, even though you still keep walking and talking. And no one can tell that no one is home unless you do something really stupid. It can last seconds or several minutes to like an hour. It’s just like sleep walking. It can happen once, or 100 times a day. You think it’s because your memory is bad, but it’s little black outs while you’ve slid into REM. I can’t find much… read more

A MyNarcolepsyTeam Member said:

I had something similar or it was what you are explaining it came at a time in my life when stress was high my sleep schedule was not being followed then the problem in my life was resolved and this… read more

posted 2 months ago

Being Angry With People That Don’t Understand

Being Angry With People That Don’t Understand

Having narcolepsy, does it make u angry or just a little upset when other people that really don’t understand you say “I wish that I could sleep like that” or is it just me? I’m saying “I wish that I could stay awake like u!”

A MyNarcolepsyTeam Member said:

Love the punctuation.,...lol

posted 7 months ago

Would You Say You Have Good Days And Bad Days With Narcolepsy?

Would You Say You Have Good Days And Bad Days With Narcolepsy?

I have been on Modafinil for over a year. My doctor finally sent me to a sleep specialist and I will have my sleep study and mslt in a couple weeks. I never feel fully rested, but there are some days that I can’t go more than 2-3 hours without a nap. I get very drowsy and my eyelids get heavy. On my bad days, this happens every 2-3hrs all day long.

A MyNarcolepsyTeam Member said:

Pulmonary

posted 10 months ago

How Can You Find Out If You Have Narcolepsy?

How Can You Find Out If You Have Narcolepsy?

I suffer from Major Depressive Disorder. But for many months I've been extremely tired to the point I feel like I can pass out if I don't lay down. I can sleep heavy for hours.

A MyNarcolepsyTeam Member said:

Definitely get a sleep study done. They just monitor your sleep nothing painful. I have done an all day one & 2 night ones. They said I sleep like I’m in a coma😳 very scary but good to know. I’ve… read more

posted 9 months ago
Already a Member? Log in