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At What Age Were You Diagnosed With Narcolepsy?

  1. At nine years old my mother went to doctor, I had CT scann and EEG and blood test but they found nothing wrong at least roled out epilepsy. When a was a teen I complainet about beeing falling a sleep during the day; the answer was 'its normal for teens to be tired. Year later I went again to the doctor and told him that this cant be normal there wasnt a day at school /coolage I could stay a wake the whole day. He send me to neurologist it took that doctor just a short interview to find out what the thing was. Ofcourse he asked for all the sleep test and yes it confirmed that I had Narcolepsi I was 17 y.

    1. I was 5 years old. It started with my kindergarten teacher noticing that I was falling asleep a lot and hard to wake up after nap time. I’d also have hard time doing math as it would make me extremely exhausted. They actually thought I had Muscular dystrophy because of my cataplexy I and now 26

      1. Hi , wow, thanks for sharing! Many members in the community have also shared that they were incorrectly diagnosed before finally being diagnosed with narcolepsy. Best, Allison (Team Member)

    2. 17 the same year i had to take my a level exams. I used to be an A* student and found school relatively easy but now I feel so far behind my piers and Im currently taking my a level exams and struggling a lot to revise and complete my exams in time even with rest breaks :/

      1. Hi , I'm so sorry to hear that you're feeling behind. You are definitely not alone as a lot of people in our community have also shared that narcolepsy really affected their schoolwork. Here's a forum thread you may find helpful: https://narcolepsy.sleep-disorders.net/forums/school. Best, Allison (Team Member)

    3. I was diagnosed in 2017. I am currently 56 years old. I have had a few sleep studies done in my 30's and 40's and had been diagnosed with various maladies to explain away my frequent "falls" and was diagnosed with excessive daytime sleepiness and circadian rhythm disorder, but nothing else. I had been to physical therapy for balance and strengthening my legs, had MRI's and CT's to rule out brain tumors, MS and many other serious diseases. They always came up negative until FINALLY a sleep study and NAP study read by a sleep specialist who was willing to dig deep, diagnosed me with narcolepsy type 1. I had experienced symptoms since I was in my late teens but never put the symptoms together. I had tried a few medications for the EDS in the past but they weren't very effective. After my official diagnosis, I was prescribed Sunosi, which seemed to help. I started on the lower dose and have since had my dose bumped up. I had trouble getting my medication filled on time and there was always an issue that caused a delay in getting it filled. I would go weeks without my medication and this made my periods of insomnia horrible. I would go for months of only sleeping a couple of interrupted hours a night, at best. It affected everything including my mood, cataplexy symptoms and my blood pressure. I now have high blood pressure and my sleep doctor and the hospitalist I saw believe it is related to my narcolepsy. I have since changed pharmacy's and haven't had those problems of getting my meds on time. After a follow up appointment and melt down at my primary care doctor's office, I got put on a combination of an antidepressant, Sunosi and BP meds. IT seems to be working and I am sleeping through the night but still feel tired when I wake up until I take the Sunosi.
      My cataplexy is triggered by negative emotions, so all the stress and anxiety from not sleeping regularly sent my symptoms into overdrive. I would doze off in the middle of conversations for a brief second and falls were very frequent. I was afraid to drive and often found myself pulling over to take a nap, even being close to home. It was a horrible period of time. I am hopeful my current medications will work as long as possible and I will have minimal symptoms for as long as possible.

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