Is anyone afraid to go to sleep due to sleep paralysis? I have the full gamut of hallucinations, and I get several upon awakening and sleeping every night. It is pure torture. I have tried amitriptyline, but gained 50 pounds, then went off it. The weight came off after. It is ruining my life. Anyone have any success stories?
On another note, I am very tired of people who don’t have narcolepsy who continue to tell me to remember these hallucinations “aren’t real”. Well, of course they aren’t real, but, for example, when you are paralyzed, hearing your 6 year old daughter screaming in the next room for help, the first instinct is not to ignore or disbelieve the cries for help. But, imagine these types of instances several times a night? Does anyone have this experience? How do you deal?
Thank you for your support. <3
I've had all five symptoms of Narcolepsy since age 6, not diagnosed until age 42. Now, nearing 63. Anti-depressants may help, but the only thing I know of that actually improves sleep architecture, is Xyrem. It's not a cure, but it's a big help. The rest is coping skills, built up over time. It's extremely difficult, but I survived for 36 years without knowing what it was. I wouldn't wish that on anyone. Believe me, I DO understand! If you decide to try Xyrem, you must get a prescription from a specially licensed physician. You can contact Caring Voice Coalition for financial help to pay for it.
Nosferatu, thank you so much for mentioning Caring Voice, as I had not heard of this organization before. Here is a link to their financial assistance page: http://www.caringvoice.org/2011/09/financial-assistance/
Another wonderful organisation!
I can only sympathize. It must be exhausting, and maddening. Some people mustn’t get that in a scarey hallucination, there’s no time to think real/not real! This disorder adds more fatigue to raising kids. I hope you and your doctor can find a good solution for you soon.
I have had probably 10- 15 full body sleep paralysis episodes and lately I have had 6 partial body sleep paralysis episodes. The first few times I had the full body ones, I was in my early teens, after that I had some in my early 20's and I thought for sure I was being possessed by demons or something. I was so scared when I couldn't move. I would break out in a cold sweat because I was panicking, not being able to move, scream for help, and I would see what i thought was an invisible cat or something coming towards me as I saw impressions on the bed slowly moving towards my face. After about 20 min, i could finally stop shaking and move but I would be drenched in sweat and weak. I did not know how to describe the events and with thinking that I was being possessed, there was no way I was going to tell my doctor and end up being placed in a psych unit. It wasnt until about a month ago that I was filling out paperwork to get my sleep study done because I was getting off the Ambien (WHOLE SEPARATE HORROR STORY) and it asked questions about what I had been experiencing... It blew my mind so I asked the Dr. And told her my story. That right there made all the difference!!! She was willing to listen and to help educate me after I had 3 conclusive tests that confirmed I had Narcolepsy and Cataplexy. My last episode was while I was sitting in church 2 weeks ago and I had a "sleep attack" but upon waking from it I could not talk or move my arms. Luckily my mother was sitting with me and I had started crying while my face was berried on her shoulder. She was able to calm me down and help me keep it mostly hidden to the rest of the people in the room. I was so embarrassed that I have not been back to church yet. Do they happen at random for other people? Does anyone else have full and partial attacks? I want to learn more so I can better prepare myself and family to help me out.