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Narcolepsy

Questions + Answers

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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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When Adderall Wears Off.

When Adderall Wears Off.

Has anyone experienced falling asleep between doses of Adderall? When my Adderall is in its highest effectiveness time it works. But my narcoleptic symptoms have become worse at other times. My psychiatrist says this is a clue pointing t word diagnosis.
I uncontrollably fall asleep.

A MyNarcolepsyTeam Member said:

I tired Adderall and it was a bad experience made me feel worse by far

posted 3 days ago

Advocacy Work

Advocacy Work

Interested in advocating for better social awareness, medication/care access, and research on conditions. Anyone with any tips on how/where to get started?

A MyNarcolepsyTeam Member said:

Check with your local ARC Association Retarded Citizens; they are in constant need of direct support staff

posted 12 days ago

Brain Fog

Brain Fog

There are many frustrations with Narcolepsy, but not being able to THINK is the most important complication of this condition for me from a quality of life standpoint. Can anyone relate to this and share their experiences (describe your "brain fog" sensation, what makes it better/worse, conversations/responses from doctors) and what medications/doses work best for you (prescribed or the desired dose)? Any lifestyle changes?

A MyNarcolepsyTeam Member said:

I’m glad Adderall made a difference for you!

posted 3 days ago

What Creative Life Hacks, Tips, Or Tricks Do You Have, Big Or Small, That Make Your Everyday Life Easier?

What Creative Life Hacks, Tips, Or Tricks Do You Have, Big Or Small, That Make Your Everyday Life Easier?

A MyNarcolepsyTeam Member said:

I used to have a screensaver: "I woke up with aches and pains, but I woke up. I don't have everything I want, but I have everything I need. My life is NOT perfect, but I am blessed." A positive… read more

posted about 20 hours ago

Who Or What Source Of Information On Narcolepsy Has Been Most Helpful To You?

Who Or What Source Of Information On Narcolepsy Has Been Most Helpful To You?

A MyNarcolepsyTeam Member said:

To be quite frank, my own body has been the best source of information. For many years, I had no idea what I was dealing with, but somehow my body gave me cues to do things that once diagnosed turned… read more

posted 3 days ago

Fitbits, Smart Watches, Etc. - How Accurate Are They?

Fitbits, Smart Watches, Etc. - How Accurate Are They?

I've been keeping a sleep journal for a couple of weeks now. The journal includes Fitbit readings (for what they're worth) of sleep cycles. One thing struck me as odd: most of the articles that I have read on sleep cycles mention that people cycle into REM within 90 minutes *on average*, then they become more frequent in the second half of the night. Mine seem to be a bit haywire. I usually fall asleep about 8:05 p.m. and up about 4:30 to 4:45 a.m. Again, for what the readings are worth… read more

A MyNarcolepsyTeam Member said:

I recently learned that delayed REM can be caused by taking anti-depressants. I'm on two of them plus another one for anxiety. When I wasn't taking them I was usually hitting REM immediately.

posted 2 days ago

Can Someone Please Help Me Understand Why Narcolepsy Takes So Long To Diagnose? What's Wrong With Our Society?

Can Someone Please Help Me Understand Why Narcolepsy Takes So Long To Diagnose? What's Wrong With Our Society?

Why on earth does narcolepsy take so long to diagnose? I've been trying hard to find some sort of logical, rational explanation, some sort of justification, but I can't find it. I know it's not a well-known disease, I know we can't expect people to know there's some sort of neurological issue with lack of orexin and an autoimmune reaction behind our symptoms, but although friends, family, doctors may not know the exact cause of the symptoms, I think they know and can see we are not well and are… read more

A MyNarcolepsyTeam Member said:

I have a new psychiatrist after being diagnosed with treatment resistant depression. That should be a red flag. She put me on Adderall. It worked really well at first. I told her I can actually stay… read more

posted 21 days ago

Does Anyone Nap At Work?

Does Anyone Nap At Work?

I currently live close enough to work that I can come home to nap if needed (1-3 times daily), but will be moving soon and will live over 1 hour from the office. Has anyone worked out a sleeping arrangement in the office? If so, what did your setup look like?

A MyNarcolepsyTeam Member said:

I nap for half hour at lunch.

posted 8 days ago
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