Living with Narcolepsy.

Usually I don't bother to talk about my condition because from what I can gather, people just don't understand. However, having recently put my blog out there in the googlesphere, I figured I'd make the effort to reach out and see if there are any other diagnosed Narcoleptics or Idiopathic Hypersomnolence sufferers out there who know what I am going through. 

I was diagnosed with/started medication for IH come Narcolepsy almost 5 years ago (around the time of my 18th birthday) and am presently weaning myself off the meds with permission from my doctor. My doctor is curious to see whether my condition has improved and if the meds are the underlying cause for numerous different problems that I've been having. 

These problems/possible side effects include: pins and needles in my fingers and toes at random times throughout the day, random numbness in all different parts of my body (I can't sit still for more than 30 seconds at a time), brittle fingernails that aren't caused by a calcium deficiency, ingrown fingernails and a tendency to pick and chew at the skin around my fingernails, extremely weak/tired arms and legs throughout the day from the moment I wake up to the moment I go to sleep, headaches, migraines, deterioration of vision, gritty and tired dry eyes, feeling "hungover" upon wakening, nausea and dizziness throughout the day, lock jaw, and what bothers me the most, impaired thought processes and speech. :(

It would be lovely to chat with someone who has or is still experiencing some of these side effects, or who has previously tried/succeeded in weaning themselves off their Narcolepsy medication in the past. 

What ended up happening? What can I expect?


  1. i don't have it, but good luck! i hope it works out for you and everything goes good :)

    1. Thanks love, I hope so too! :)

      - Felicity. x

  2. I hope you improve soon. I just wanted to let you know that I've experienced a lot of those symptoms lately (I'd say almost all) and I have no link with any kind of narcolepsy or sleep disorder. Best wishes x


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