The Narcoleptic Blog

I am a full time college student who suffers from Narcolepsy with Cataplexy. This blog is to bring awareness to the disorder as well as other sleep disorders

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interesting TED talk about the science of sleep...

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It has been confirmed that narcolepsy is in fact an autoimmune disorder..

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Sleep Disorders | Dr. Ravi Aysola - UCLA Health System

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When were you diagnosed? Did you continue to get worse after finding out you had narcolepsy? I'm 17 and was diagnosed this past summer. Suddenly everything I dealt with for around 4 years made sense, but it's really frustrating. I've been on 5 different meds in the past 4 months, and I'm still getting attacks. Sleep paralysis, hallucinations, cataplexy, all that. I even have automatic behavior going on. It's getting pretty difficult to deal with bc no one understands. So, how do you manage?

I was diagnosed when I was 23 while in the Air Force. I was in the dark for many years about cataplexy, hallucinations, and Automatic behavior. It wasn't until 2 yrs ago that my narcolepsy symptoms progressed into full cataplexy episodes and frightening hallucinations. I think the first thing that helped me to manage my symptoms was that I had to recognize narcolepsy as something I couldn't control. You should push yourself to breaking points to see what you can tolerate and what you can't. Allow yourself a learning curve to explore the new you. You will fall down but you will also get back up. The biggest thing is to give yourself a break. It's okay to fall and it's okay to see ufos and monsters at the end of the bed because this is the world of most narcoleptics. Also never forget that you're not alone and there are people who love and understand you. So welcome to the club if you need other resources please feel free message me.

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Hi, my finance aged 24 had unfortunately been diagnosed with both narcolpepsy and cataplexy this year, have have a 6 month old little girl and he is struggling gto deal with his condition and the fact that he will have to learn to live with it. I would love to hear back from you on how deal with your narcolepsy and catplexy, he has become extremely depressed as he was a very active outgoing person previously, I am struggling to comfort him as he has become very distant and angry. Please help

The best insight I can give you is this… Narcolepsy is probably one of the most isolating disorders. You go from being an adult to a baby again learning how to survive. When I first started getting serious cataplexy symptoms I felt like I had to explain myself to my friends and new people I met. I lived from minute to minute in shell shock trying to stay in control of myself which often meant to push everything that could cause symptoms away. You don’t feel safe in your own skin anymore and simple task like cooking a meal or taking a shower can be deadly.  Just so you know the anger isn’t directed at you and its not directed at your relationship. Its an inner anger of years developing feelings thoughts and actions only to find you have been sent back to square one to become a different person. Also even though we may seem like we sleep well PWN ( people with narcolepsy) often are very sleep deprived and very cranky.

There will be some things that will be unavoidable. The “looks” in public when he has a cataplexy attack. You will find you will know more about Narcolepsy symptoms then most doctors. People will ask you crazy questions. You will miss some social gatherings or be forced to go alone because of sleep attacks or cataplexy days. He will have days where he will bite your head off at the smallest thing because of exhaustion. You will lose friends and some family wont understand.There is no text book Narcoleptic and symptoms can come and go. Medication will be a trial and error and will take awhile to find the right meds.

You as the loving future wife and caregiver have the daunting task of walking a fine line of wanting to be supportive to being too supportive but there is hope and support out there for you and your family.  I would start by getting him into a therapist to talk about his depression. there are a wide range of medicine that you can start trying that might make symptoms less severe.  It will take some time for your man to become comfortable with himself again and the best thing he can do is surround himself with people he trust and let the narcolepsy and cataplexy symptoms happen. Help him to regain his self confidence by letting him know that its okay to have attacks and that you accept him for the person he is cataplexy and all.  Also get some counseling for yourself. I hope this has helped and you and your finance are always welcome  to drop me a message anytime! I try to not to stay away too long.

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S.O.U.N.D. (Sufferers of Unique Narcolepsy Disorder) is a support group for parents whose children were diagnosed with narcolepsy after taking the Swine Flu vaccine Pandemrix in 2009. This is a word from them to others out there who may be in a similar situation. http://www.neartv.ie https://twitter.com/#!/NearTV http://www.facebook.com/neartv

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Sen Whelan speaking on commitment to support families affected by Narcolepsy from vaccinations

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Fun read about the extremes of sleepwalking...

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Check out Julie Flygare and friends as they show their support for Narcolepsy awareness

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I will be attending this year and I am very excited! I will be sending you guys pictures and possibly video. Will anyone else be attending?

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A short video dealing with night terrors and sleep walking

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Check out this discussion group describing issues of maintaining a correct body temperature.