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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

posted September 11, 2020
A MyNarcolepsyTeam Member

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

posted January 31, 2021 (edited)

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

posted January 8, 2021
A MyNarcolepsyTeam Member

such an issue for me too!! ive been trying to set myself up with a routine to streamline or automate the process but still in the works

posted July 29

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?

posted July 4, 2020
A MyNarcolepsyTeam Member

It really was a shock. I can reflect on my whole life and see the symptoms from my earliest memories.

posted November 22

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.

posted April 29, 2020
A MyNarcolepsyTeam Member

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 May 13, 2021

Has Anyone Else Heard About This?

Has Anyone Else Heard About This?

Looks like a new, timed-release version of Xyrem/Xywav might be available soon that will eliminate having to wake up and take a second dose.

https://investors.avadel.com/news-releases/news...

posted August 17
A MyNarcolepsyTeam Member

MichaelYJ did your 2nd dose get you to sleep? Do you eat your dinner hours before you go to bed?

Just curious if your stomach is full, you will have slow absorption. If your last meal was finished… read more

posted September 9

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?

posted April 14
A MyNarcolepsyTeam Member

Lol i still self medicate alkng with the meds so im not judging girl! But sudafed - that shit knocks me right out! I get the initial blast for about 15-20 min and then im out for 12!

posted July 12

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!”

posted March 22, 2021
A MyNarcolepsyTeam Member

i joke at least the anger keeps me awake since nothing else does haha, being misunderstood or told by others how YOUR condition is/acts is one of the most frustrating parts of this !

posted July 29

What Supplements Do You Take?

What Supplements Do You Take?

I do not take meds. To pursue the doctor route I would have to give up my license and be told I'm wrong until proven right. So I do caffiene. A lot of caffiene. I know there are others in my boat but in many casses people have said they take supplements. The caffeine is killing me. I consume on a good day 1200mg and on a bad day 3000mg of caffeine. Are there supplements I can take to take it's place or at least cut it back?

posted September 21
A MyNarcolepsyTeam Member

The doctor put me on dextroamphetamine & a anti-depressant both drugs are for my narcolepsy and 2 supplements Vitamin B-12 and Calcium both supplements also related to my narcolepsy.

posted November 25

What’s One Thing You Wish People Who Aren’t Living With Narcolepsy Could Understand?

What’s One Thing You Wish People Who Aren’t Living With Narcolepsy Could Understand?

posted August 26
A MyNarcolepsyTeam Member

I wish they could understand that it is not that I am lazy. I get tired. Also that I am not losing my mind when it comes to the cataplexy spells. They are very rough on the body.

posted October 12
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