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How Do You Manage Triggers That Worsen Narcolepsy Symptoms?

MyNarcolepsyTeam asked a question 💭
San Francisco, CA
April 26, 2023
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Answer Summary

Members shared a variety of personal strategies for managing narcolepsy triggers, with many finding relief through quick physical... Read more

Members shared a variety of personal strategies for managing narcolepsy triggers, with many finding relief through quick physical interventions like cold water exposure, getting fresh air and sunlight, or using ice plunges to snap out of brain fog and reinvigorate themselves. Several members described success with cannabis products, including CBD oil and THC-infused energy pills, reporting improved brain function, fewer sleep attacks, and reduced reliance on excessive caffeine, though some noted the need to monitor whether their bodies adjust over time. A recurring theme was the importance of distraction techniques such as breathing exercises, singing, or mental games, alongside grounding practices from DBT workbooks and giving oneself grace when symptoms feel overwhelming or uncontrollable.

A MyNarcolepsyTeam Member

One thing that helps me is going outside and getting fresh air and sunlight if I’m feeling like a drag/fog.
I have also started using a cane for balance issues. It feels weird, but I made it mine by adorning it with stickers.

April 26, 2023
A MyNarcolepsyTeam Member

A Canabis Sativa joint is an experience beyond any other when a sleep attack is lingering has got me past it and confidentally and happily get on with my day. Miraculous really.
Cannabis has by far been the most improvement to my body and has adjusted my system that I truely appreciate every day.
CBD oil has also been a consistant addition to my life over the last 7 years and has improved my brain function and attacks and lifestyle has be improved.

I still have all of my symptoms guys that hasn't changed but the quality of life I have with Cannabis is the best thing I have ever taken.
Another tip:
Top Quality Home Made Coffee, brewed from real beans....

Raspberry jam on toast in the morning is by far one of the most buzzing for the brain and body.

A Cold Shower to reinvigorate your immune system and stimulate you again. Works.

May 1, 2023
A MyNarcolepsyTeam Member

I try to find a way to distract myself. Going outside is good, but hard to do sometimes. Breathing, candy crush, whatever can get my mind on another place.

April 30, 2023
A MyNarcolepsyTeam Member

It invigorates me and snaps me out of the feeling for a bit.

June 13, 2023
A MyNarcolepsyTeam Member

Since weed is now legal in my state. I've tried a cbd/thc energy pill. I've also lost a lot of weight. When I lost the weight my seizures got worst and concentrated. I was up to 45 cups of coffee a day and it was horrible. Since I've started taking the pills it's closer to 4 cups. i still get the seizures but I can push back and not lose consciousness but something in between. They last for a second and I can break the cycle with a distraction. Just started so I still need to see what my body does to adjust. I've been estatic about other treatments only to have my body eliminate the effects. So far so good.

May 11, 2023

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