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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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Has Anyone Tried The Shock Clock 3 Or Other "electric Shock" Type Devices?

Has Anyone Tried The Shock Clock 3 Or Other "electric Shock" Type Devices?

posted December 18, 2022
A MyNarcolepsyTeam Member

Tried hooking myself up to 2 tens units while driving from Arizona to Louisiana.
Not as good as you may think

posted December 25, 2022

Should I Get A CPAP To Help Me Sleep On My Back?

Should I Get A CPAP To Help Me Sleep On My Back?

I have mild sleep apnea in additional to type 2 narcolepsy, so my sleep doc suggested positional therapy to help me sleep on my sides. However I also have chronic pain in my shoulders and neck and hips which makes it painful to sleep on my sides. Sometimes it's so bad (like last week) that the pain makes me nauseous. I was in bed all day and kept throwing up. It would greatly help my pain problems if I could sleep on my back, but I can't because of the sleep apnea. I know many CPAP users don't… read more

posted December 14, 2022
A MyNarcolepsyTeam Member

If I didn't have my cpap I would probably be dead by now. I can't sleep on my side or back any longer without additional support to relieve the stress it places on my spine, shoulders, neck, and hips… read more

posted December 30, 2022

Has Anyone Experienced Really Negative Reactions To Stimulates After Being On Wakix That Lasts Even After You Stop Taking It?

Has Anyone Experienced Really Negative Reactions To Stimulates After Being On Wakix That Lasts Even After You Stop Taking It?

I don't know what is going on with me, after trying wakix for the 3rd or 4th time with different combinations, only to have negative side effects 2+ months after starting I've given up trying to make it work.

This issue is after each try those negative side effects last far longer then I think they should, what happens is any type of stimulant (Adderall, nuvigil, focalin even caffeine) causes negative side effects to my body I feel like I have sinus pressure and my neck and abdomen are… read more

posted December 13, 2022
A MyNarcolepsyTeam Member

I use Sunosi. I am not on any other medication that causes any sleepiness.

My Dr and I eliminated drugs with side effects that could interfere with one another.

Personally, I don't believe piling… read more

posted January 19

(edited) Has Anyone Tried Light Therapy Glasses?

(edited) Has Anyone Tried Light Therapy Glasses?

I'm going to purchase luminette 3 glasses to help with my EDS. (Edit: I removed "blue" from my question since I noticed I may have misnamed them.)

posted December 7, 2022 (edited)
A MyNarcolepsyTeam Member

Here's the wording from the Luminette 3 website
Luminette® emits a safe blue-enriched white light peaked at 468 nm. This wavelength is proven to be the most effective at triggering the body's… read more

posted December 12, 2022

Has Anybody Had Better Results With WAKIX Vs. Combination Of SUNOSI And XYWAV?

Has Anybody Had Better Results With WAKIX Vs. Combination Of SUNOSI And XYWAV?

I am currently taking SUNOSI during the day and tried to switch to WAKIX because of my cataplexy and sleep paralysis. My insurance would not approve WAKIX until I tried XYWAV so I started XYWAV. I find it almost ridiculous that XYWAV is twice nightly dosing! My anxiety is worse and affecting my overall sleep because half the time I can't get that second dose accomplished between 1-2 am.

posted December 6, 2022
A MyNarcolepsyTeam Member

I know the feeling but xywav changed my life completely!! That being said I created an automated system to make sure I took my second dose, basically it starts the timer as soon as I take the first… read more

posted December 6, 2022

Has Anyone Else Done Mouth Taping To Get Off Their CPAP Machines? Several Of Us Are Doing It And No More Cpaps! Lots Of Info On YouTube.

Has Anyone Else Done Mouth Taping To Get Off Their CPAP Machines? Several Of Us Are Doing It And No More Cpaps! Lots Of Info On YouTube.

posted December 6, 2022
A MyNarcolepsyTeam Member

I'm not a mouth breather so this taping would not allow me to discontinue cpap therapy. I think I may be the only person who has never had any issue using cpap. The only time I've ever not used it was… read more

posted December 30, 2022

Why Does Negative Air Ion Therapy Works To Some Degree For Epileptics

Why Does Negative Air Ion Therapy Works To Some Degree For Epileptics

it has some influence in everybody you only have to go to a rough sea or waterfall to feel it so why can it over ride the sleep urge of epileptics which has an entirely different orign

posted December 4, 2022

Is It Possible To Have Evening Sleepiness And It Still Be Narcolepsy

Is It Possible To Have Evening Sleepiness And It Still Be Narcolepsy

posted December 3, 2022
A MyNarcolepsyTeam Member

I am not a medical person. I am a male person who has narcolepsy.

Questions - Do you take a med to keep you awake during daylight hours? If yes, is that med completely out of your system by… read more

posted December 10, 2022

What Is "John 3.16" All About ?

What Is "John 3.16" All About ?

posted November 30, 2022
A MyNarcolepsyTeam Member

I don't think it has much of anything to do with narcolepsy.

posted January 6
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