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Narcolepsy

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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 over 1 year 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 about 1 year 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 about 1 year ago

Has Anyone Else Used Illegal Stimulants And Then Discovered Why Later Life When You Were Diagnosed With Nargosy

Has Anyone Else Used Illegal Stimulants And Then Discovered Why Later Life When You Were Diagnosed With Nargosy

Don't judge me. This coming September I will have 4 years clean and sober. Since I was 25 and I have abused methamphetamine. And it didn't really get me high it just allowed me to function and do things that everyone else was doing my age. Has anyone else found that they were literally self-medicating with stimulants?

A MyNarcolepsyTeam Member said:

So I'm a 70's child. Growing up getting high was a way of life and taking stimulants was as well. I wasn't diagnosed until Early 90's. By then I was burning through a pound to two pounds of weed a… read more

posted 11 days 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 about 1 year 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 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

Virtual Neurologist Doctor Recommendations?

Virtual Neurologist Doctor Recommendations?

I feel very limited with the doctors that are "in network" and within driving distance. Does anyone have any recommendations on a good neurologist that specializes in narcolepsy that does virtual appointments?

A MyNarcolepsyTeam Member said:

I was told that you have to go to California or New York. There is no one near me that is a good doctor. I was diagnosed by a neurologist in NC in 1983 and since then I have just kept renewing my… read more

posted 18 days ago

Anyone Deal With Or Know About Narcolepsy Going Into Remission?

Anyone Deal With Or Know About Narcolepsy Going Into Remission?

I've had since I was young. I have gone into what seems a hybernation state several times for several months to years at a time since. I'm 56 now. If this has happened to me, why can't remission be figured out so that we can put Narcolepsy in remission always?

A MyNarcolepsyTeam Member said:

I'm dealing with something similar now. You see, I'm a strange case. For thirteen long years not only was I not diagnosed, but because I was dealing with something I didn't understand and people were… read more

posted 2 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 9 months ago
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