I was just recently diagnosed with Narcolepsy. I'm confused and wondering what it all means for me, but also relieved to have a diagnosis finally that fits the symptoms I've been living with for years.
I am curious about how my experience compares to others.
Some of my symptoms -hallucinations, sleep paralysis, insomnia, automatic behavior- have been going on for as long as I can remember. I had just taken those things as part of my life. It wasn't until about 5 years ago that I developed any kind of noticeable cataplexy, my left side would just kind of give out or get weirdly clumsy. I tripped over myself all the time and fell down stairs. Over the years I just got more and more exhausted, until it became intractable. This past year I stopped being able to wake up, it's like I cant shake the sleep from my brain, and I just have to sleep at seemingly like random times or "space out". But for all the tiredness in the world I can't actually sleep and get rest. Can't exercise, can't work, can barely even think. A few weeks ago I just full on collapsed on my dog (thank goodness for slow fat dogs) while I was doing dishes... which is the event that led to my diagnosis.
That's it in a nutshell for me, I'd really like to hear about what is in other peoples nutshells... and how you cope. I'm basically dysfunctional right now, and it is hard- desperately hard- for me to be hopeful. Does anyone else experience cataplexy during exercise, or other things that make you happy? Running, bike riding, hiking, skating, dancing, I love these things but.. I'm like a fainting goat now.
Don't loose hope. Hope is the little thing we can hold onto as narcoleptics. Don't know if you keep up with the center of narcolepsy but they have already found out that narcolepsy is caused by the immune system which takes the chemical we need to be awake and live a good life. They are working on a complete cure; medication helps i havent had medication for 2 months.. can't get help. can't find help, cant get the energy to get help. The hardest thing about having narcolepsy for me is that I'm only up once and a while. and i feel like i use my whole brain to stay awake to a point where i lost all the time i had to get any help. I do not have cataplexy though so I can't really relate. but I have learned from a lot of narcoleptics that every case is different. Its good to know your diagnosis, and if it makes u feel any better i collapsed running with my husky on the road. and my husky howls... so i woke up to my husky howling in the emt. now that was after my diagnosis ;( but, it helped knowing i had a problem. ill talk to you if you ever want to. its nice to have someone with the same problem to talk to every now and then. i know i could use some more friends :)
I used to get prolonged hypnopompic hallucinations. Mine weren't frightening after I got used to seeing people I didn't know or being in places I knew I wasn't. I did become bored and annoyed, then discouraged because I didn't like this lengthy phase that made getting up very hard. C-PAP along with meds and improved night sleep did help.
I take naps and hypnogogic hallucinations occur before I actually sleep. Since naps are usually refreshing for me I don't mind those.
I have a howling husky as well! If I collapse somewhere she yaps and chews(affectionately) on my head, the golden retriever steals my socks and eats them. I'd really like to be able to talk. It is more difficult than I thought it would be to describe to others, it is a physical ailment but much of the experience is ephemeral. doxatomic said:
Don't loose hope. Hope is the little thing we can hold onto as narcoleptics. Don't know if you keep up with the center of narcolepsy but they have already found out that narcolepsy is caused by the immune system which takes the chemical we need to be awake and live a good life. They are working on a complete cure; medication helps i havent had medication for 2 months.. can't get help. can't find help, cant get the energy to get help. The hardest thing about having narcolepsy for me is that I'm only up once and a while. and i feel like i use my whole brain to stay awake to a point where i lost all the time i had to get any help. I do not have cataplexy though so I can't really relate. but I have learned from a lot of narcoleptics that every case is different. Its good to know your diagnosis, and if it makes u feel any better i collapsed running with my husky on the road. and my husky howls... so i woke up to my husky howling in the emt. now that was after my diagnosis ;( but, it helped knowing i had a problem. ill talk to you if you ever want to. its nice to have someone with the same problem to talk to every now and then. i know i could use some more friends :)
I am hoping meds will help me get some actual sleep, or beneficial naps... so far no luck on that front. As far as transitional states my husband has banned me from watching Hannibal(one of my favorite "i don't feel good shows"), since I have the disturbing (disturbing for him since I don't really remember) habit of falling asleep with my eyes open and carrying on conversations while watching it. I've always done that to some extent, and I am sure that is how I got through high school and most social engagements, but I turn into quite the disturbed little philosopher if I happen to fall into that state during that show. Carol said:
I used to get prolonged hypnopompic hallucinations. Mine weren't frightening after I got used to seeing people I didn't know or being in places I knew I wasn't. I did become bored and annoyed, then discouraged because I didn't like this lengthy phase that made getting up very hard. C-PAP along with meds and improved night sleep did help.
I take naps and hypnogogic hallucinations occur before I actually sleep. Since naps are usually refreshing for me I don't mind those.
some of my hallucinations are very scary. My family has seen me “awaken” as someone else like a car racer from my dream. I even become violent at times. a good deal of my hallucinations are about the same house and even when I wake up I think I am there.
this group helped me not feel so alone.
I am lucky I have five dogs. Two of them have become my therapy dogs. our pit bull will lay his head on my knee and not move if I am about to have a bad spell. the two of them walk on both sides of me if I am having a hard day.