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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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Do You Feel Like Your Narcolepsy Gets Worse If You Do Too Much One Day?
A MyNarcolepsyTeam Member asked a question 💭

I know with chronic fatigue syndrome, you can push yourself too hard and then have consequences of that in the following days. Do you feel the same thing with narcolepsy?

posted April 25
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A MyNarcolepsyTeam Member

I notice the same @A MyNarcolepsyTeam Member

posted May 17
Something I've Noticed About Sleep Paralysis...
A MyNarcolepsyTeam Member asked a question 💭

It's always bad but it's usually about the same intensity. I mean we can start to move a little with enormous effort, or we can make a little noise by trying to scream or we can blink or move our eyes and hopefully a spouse notices and will shake you to wake u up. Even prayer when we see the "demonic" entity. We can see that our struggles are starting to work. We are breaking free. Then when we wake up we feel a little better and a little less afraid of the next encounter. BUT (I suspect many of… read more

posted April 23
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A MyNarcolepsyTeam Member

Absolutely keep searching for a sleep specialist who will help you!!! Because of my medication tolerance situation I had been prescribed everything available (at the time 1990's) I went (thank God) on… read more

posted May 4
Is It Normal To Lose Body Control After A Narcolepsy Episode?
A MyNarcolepsyTeam Member asked a question 💭

The other day I had fallen asleep because I had forgotten to take my medicine. When I woke up I stood then took a step and my whole body crumpled beneath me. I couldn't even reach out my arms to stop the fall. This has never happened to me before but I also have never gotten right up after an episode. Normally I gather myself together mentally and then move. So I didn't know if this was something I should worry about.

posted April 21
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A MyNarcolepsyTeam Member

No to the Zyrem, my Dr has me on Modafinil and I have low blood blood pressure as normal readings, or did till the chronic pain. But I've never felt anything like that before.

posted May 5
Does Anyone Have ADHD And Narcolepsy?
A MyNarcolepsyTeam Member asked a question 💭

I went to my doctor and explain to them that I thought I might have ADHD however, it is not being effectively treated because I was told that the medication for ADHD had the opposite effect in people who had narcolepsy and that’s why it worked. However, if you have ADHD and narcolepsy, does it work for one and not the other? How are you treated for both conditions?

posted April 18
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A MyNarcolepsyTeam Member

I take Adderall XR bid and Ritalin

posted May 1
In What Ways, If Any, Has Your Narcolepsy Affected How You Consume Alcohol?
A MyNarcolepsyTeam Member asked a question 💭
posted April 17
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A MyNarcolepsyTeam Member

I still drink but not like I used to. In a way that's good. I've had a lot of friends who died of alcohol related symptoms. I still drink when I cook sometimes or with friends. When I'm cooking it's… read more

posted May 11
When I'm Extremely Tired, I Get A Sensation That I Can Only Describe As Skin Crawling. Has Anyone Experienced A Skin Crawling Sensation?
A MyNarcolepsyTeam Member asked a question 💭
posted April 13
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A MyNarcolepsyTeam Member

I haven't found anything to help either. It's almost like my tired brain is short firing the nerves on top of the skin. Only thing I know to do is lay down and allow my body the space to fall in and… read more

posted April 30
I'd Like To Hear From Those Of You Who Go Through Sleep Paralysis
A MyNarcolepsyTeam Member asked a question 💭

If you suffer from sleep paralysis and it started before the age of smart phones and google, how did you react? How long did you go without knowing what was happening?

posted April 12
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A MyNarcolepsyTeam Member

I originally just thought I was scared of suffocating. Like I thought I would suffocate if I was underneath the covers and the paralysis was just me panicking so I would hold my breath to try to wake… read more

posted May 17
New To Forum / Anybody Experience With A Drug Called Xyrem?
A MyNarcolepsyTeam Member asked a question 💭

I was diagnosed with narcolepsy in 2006. My wife and I are expecting a baby so I once again saw a sleep specialist here in the US (I moved from Europe). They are suggesting a drug called Xyrem; can anybody share their experience with it?

For context: I have been taking other (not very helpful) medications for the past 10+ years. The doctor's description of Xyrem was a bit odd (e.g., having to wake up during the night to take a second dose?), so was curious to see if anybody has tried this and… read more

posted April 10
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A MyNarcolepsyTeam Member

I am on Xywav which is basically the same thing with a lower amount of sodium. It has been life changing. I have been on it for three weeks. They have a nurse call you and go over all of the… read more

posted May 1
Is Anyone Taking "2" 200mg Brand Name Provigil Daily? .
A MyNarcolepsyTeam Member asked a question 💭

And on the 2 / 200mg name brand Provigil daily. What time span between doses and on the second dose is there a cut off time? Based on if you take it any later you wouldn't be able to fall asleep. Or what?

posted April 6
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A MyNarcolepsyTeam Member

I took it for a while, and it did not help me at all, and gave me major headaches.

posted April 18
What Medication Seems To Work The Best For The Majority Of People
A MyNarcolepsyTeam Member asked a question 💭
posted April 2
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A MyNarcolepsyTeam Member

I take 50 mg. of Vyvanse every morning. It is pricey, but keeps me awake for up to 12 hrs. The only downside that I have is one out of four nights I may have trouble sleeping. But I've learned to… read more

posted April 8
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