Living With Cataplexy and Narcolepsy
I sleep most of the time, and I also dream in the day. I fall to the floor anywhere if I laugh or start sleeping while I’m talking to you! BBC Video Nation Documentary 3mins
Tags: Living, sleep, bbc, documentary, Narcolepsy
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ah nice to see someone who knows what theyre talking about for a change! most people seem to think cataplexy IS narcolepsy and it drives me mad! i was trying to explain to people at work that its called cataplexy and is just a symptom of narcolepsy but no one believed me!
same when i tried to explain that schizophrenics dont have split personalities, no one listens ot me =(
lol
i am dave, i have narcolepsy , the doctors have given me a drug called vivactil. man does it take care of the cataplexy. it wa getting worse but they added alil more and it does its job with me. i know what youi feel. good luck
Hey im 18 and have just found out that i have cataplxy i have lived with it for years now but i have only just been diagnosed! it scares me as to what the future holds but it is really helpful hearing others stories! thankyou and i hope you are well.
amen!
@SANDMANCASTHISSPELL u must be a fool. imagine what would happen if he fell asleep in a wheelchair going down a hill towards a road, do you think that would really solve his problem. think.
That took a lot of courage to post!!!
God bless both of you. Remember Revelations 21:4 And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away.”
Lots of love!
godbless. <3
Thanks for sharing! Im a person with the same disorder and know what its like. Im not afraid of dying, i think the worst thing is the social handicap it gives me. Cant count the number of times ive been thrown out of clubs just because they think im drunk beyond.
thanks God I am healthy, you deserve all my respects, it is not easy to talk about this illness when most people don’t even know this exists. Hope you’ll ok. Take care :)
Get a whelchair and strop yourself in by the chest. Dont get why dont u use one
Daud, thanks for sharing….very insightful.
Respect and everything man, but i laughed so loud at the last bit, I dont want to sound mean or anything. I really do feel for you man, and all the best of luck.
It IS very hard to live with this illness. My cataplexy is not as pronounced as it has been in the past. My husband and my teenage boys can tell when I’m starting to ‘lose it’, they catch me before I can fall or hold my head up so I won’t hurt my neck. My fear is one day my head will fall back when no one is around, and I won’t be able to breathe. Good luck to you, and thank you for posting this. It’s such a misunderstood disorder, even by many doctors, as I’ve discovered.
Thanks for you comment. I used to wear one around my neck but the times I needed help, the doctors and nurses didn’t know what narcolepsy was, When I ended up in hospital once my carer came in and was trying to explain that I had narcolepsy, and was in a cataplectic attack, but nobody seemed to understand what she was saying. When I did wake up they really seemed shocked and suprized. there are still a lot of people that have never hurd of it.
Wear a medic alert braclet or similar that states CATAPLEXY -
I was recently diagnoist with narcolepsy a few months back i dont have cateplexy nor do i fall asleep suddenly i just can sleep for long hours with out my medication. Have you asked your doctor about a medication named Xyrem its supposed to help with and prevent cateplexy I am on that medication so it will prevent me from getting it later on since I am only 18. But i wonder if Xyrem would help you. Take care.
Son 24 has unDx cataplexy 9+ years. Unable to leave the house unless someone is with him.Its been a while how are you doing.
I don’t know if people have said this, but in America, we have MEDIC ALERT bracelets for people who have important medical issues. The info is on the bracelet, so that medical responders/police know what to do. If you have something like this in your country, you should get one, or maybe you could give your info and pic to police stations/hospitals etc. so they know who you are and stop torturing you.
Hi - I am an A&E nurse. Ambulance crews and medical staff may inflict slight slight pain in someone who is not alert or responding to voice. This is for the glasgow coma scoring system we use. I recommend you wear a medi-alert SOS bracelet or necklace with your condition written on it. Paramedics and nurses in A&E look for these clues when we care for you. Doing this will alert us to what the problem is and then we can ensure we tailor our care to your medical condition. All the best mate.
Thank you for posting this. I am a third year medical student learning about sleep disorders. It is such a help to be able to see an actual case of narcolepsy. Best of luck to you and the man in the video. Has he been receiving stimulant therapy and is it helpful? Also, does he have hypnogogic or hypnopompic hallucinations?
that sucks. i feel bad for him
It must be very hard to live with this illness. I have epilepsy, and I experience grand mal seizures. To lose control of my body and mind is terrifying. You will be in my thoughts. Peace & Love
poor guy
Karen should get a best human award.
I’m researching narcolepsy for a story I’m writing and I feel this video is going to be helpful, so thanks for that. Good luck to you, and I’m glad you have someone to be there for you and help you out.