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Can't Take Short Naps
I find it very difficult,and seldom am able to nap for just 20 minutes to half hour. Once I start an afternoon nap it is at least an hour, sometimes two. Anyone else have this problem? Any tips on making it work?
I struggle with this, although sometimes when I have a severe sleep attack I can sleep for 14-18 hours. It scares my family.
What's A Difficult Topic Or Conversation To Have With Your Doctor?
@A MyNarcolepsyTeam Member Yes, they may be the wrong doctor, but sometimes you have no choice in your doctor. Insurance as it is and finances of the patient will often dictate the type of care a… read more
What Advice Do You Have For Others About Managing Fatigue?
Alright I do have some for driving that I forgot. When I get tired my breathing gets shallow. What I do is take 3 deep breaths and hold my breath as long as I can. Then let it out. That gets the heart… read more
Has Anyone Used A Health Tracker To Monitor Narcolepsy Symptoms?
I’m thinking of buying a health tracker to monitor my narcolepsy symptoms, but am not sure if they work for people with narcolepsy. I had been looking specifically at Muse, Oura, and FitBit. Has anyone used any of these successfully?
I have a watch that monitors my sleep, oxygen levels, sugar levels, temperature and my blood pressure! Love this! I don’t have a Cpap anymore as the company took it away! I missed some nights wearing… read more
With Narcolepsy Being Autoimmune, I'm Curious What Other Issues/conditions People Have Going On..
I have the following autoimmune diseases …..hypothyroidism, Sjögren’s syndrome, and Narcolepsy 1with cataplexy. My non autoimmune health issue is sleep apnea. have a few
Are There Any Resources To Afford Sleep Study Without Insurance? Has Anyone Been In Legal Trouble Due To EDS And Narcolepsy?
The university by me charges $6000 for both the nighttime and daytime sleep study. I am still paying off my neurologist appointment which was over $1000 and just reaffirmed my ADHD and checked my reflexes... 20 min, in and out. Very disappointing.
I needed the sleep study for court. I am now looking at outside areas (I live in Chapel Hill NC near Raleigh) that might offer sliding scale.
I do not want to go on disability by any means. That would hurt my court case to get my daughter home. In… read more
Hi Irene
I’m sorry your dealing with all this…
I have been misunderstood my whole LIFE, to the point my own mom got rid of me.
I’m not sure? but did the Court say you need the study
IF so… The… read more
What Is 'team Building' For? Do I Need To Do This?
I don't know - selecting people for my "team" seems playing favorites with people I don't know. That seems weird to me.
I regret your negative experience Lisa. CBD can be purchased locally (my home in sw La.). My online purchase came from Able Farms. They have a "CBD Sleep Dropper". My current prescription sleep… read more
How Do Most Cope With Others Perception Of The Disabling Effects Of Narcolepsy?
I struggle with saying the truth to why I don't get certain things done because I feel as if people judge me when I say "I was to tired" as laziness. But I struggle even more with forgetfulness and how people perceive my struggles. "I forgot" is an unexcusable term in today's insensitive world. But brain fog will have you forget more than most expect.
When I feel judged or misunderstood I refer people to Google to educate and inform themselves about narcolepsy and its symptoms. Years ago while I was still working I printed narcolepsy information… read more
When I'm Extremely Tired, I Get A Sensation That I Can Only Describe As Skin Crawling. Has Anyone Experienced A Skin Crawling Sensation?
I recently had an experience where my skin was crawling all over my entire body. This had never happened before. Typically my skin crawls in my face and scalp. Sometimes in my legs and occasionally on… read more
What's The Most Important Thing You Learned About Living With Narcolepsy This Past Year?
Listening to my body is a daily practice. Routines are important! Compassion is necessary. Perfection is not the goal. There are so many options for treatment/ management. Take advantage of what… read more
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