I had to put this out there, in hopes that it may help somebody someday.
About 3 years ago I went to my family doctor. My symptoms were
- Excessive daytime sleepiness (think 12-20 hours)
- Vivid, terrifying nightmares
- Random sleep spells, that caused me to drop wherever I was
- Horrible short term memory issues
Sounds like narcolepsy right? During this time I also had severe mental illness. Severe depression, severe PTSD, bulimia. I was told that depression was common in narcolepsy and that narcolepsy caused an exaggerated startle response, because of constant sleepiness and that the same chemical responsible for sleep also was responsible for food cravings. I was given an MSLT, while on Effexor (I was unable to come off of it). I "passed" it with flying colors, except I never exhibited any REM during naps. It was thought that the effexor caused the lack of REM during naps.
Two years went by I had been on every stimulant you can think of and I'm just getting worse and finally they decide to start xyrem. As the warning label says, it ended up causing psychosis. It took me three months, two of which was spent in a psychiatric ward, to pull out of it. While I was dealing with it I was put on anti psychotics. Suddenly the "cataplexy" episodes stopped. Entirely. And I could pick my head up.
Of course none of my doctors were like "what the heck"? But I was. Anti psychotics should have been making me more tired, but instead they were helping, dramatically. Even the dreaded seroquel that causes most patients to knock out for hours on end made me perk up. While going through the intense treatment I started to talk about voices that existed inside my head. My doctors started to freak out. They labeled me schizoaffective. But I knew that I wasn't schizoaffective. Because these voices weren't abnormal. I didn't even know that I was supposed to talk about them and I had seen many professionals prior to this. I thought everyone had them. I didn't know what they were, but I knew they weren't hallucinations.
I finally started to dive into my PTSD diagnosis and went to a specialized program for it where I was diagnosed with dissociative identity disorder. I took this from the DID source book, and it describes what was happening with me and why it would have appeared that I had narcolepsy.
Cindy wants to kill herself every time she has memories of her childhood abuse. Sometimes the memories appear as pictures in her mind, and at other times she feels intense sadness and fear, but something keeps her from hurting herself. She cannot fully explain why this happens. All Cindy knows is that she goes into a kind of a trance and does not have the energy to hurt herself. Typically she falls asleep, and wakes up a few hours later capable of dealing with life again. What she does not know is that she has an inside part who's job it is to keep her alive.
My psychiatrist explained to me that different parts can be really powerful. As I started to piece things together it made a lot of sense. And the striking similarities between the two disorders made me suddenly realize how a doctor could have possibly misdiagnosed. People with DID will have horrible nightmares, insomnia, terrible short term memory issues, and can fall asleep fast so parts can end up avoiding different stimuli. On my good days I was sleeping around 17 hours a day.
The reason the anti psychotics aided in helping me, was because it lessened my anxiety, which caused less "switching" to occur, which made me able to stay awake. (switching causes so much sleepiness) I don't do well off anti psychotics these days. If I start to get tired, I now know that I have been switching too frequently and I end up taking a benzo to keep me awake and to prevent me from switching so rapidly.
I know that DID is a controversial illness and that some people don't even believe in it. That's fine. If it was narcolepsy, then I guess narcolepsy treatment would have helped me. But narcolepsy treatment doesn't help me. The treatment used for DID helps me. I sleep around 10 hours now and even got my license back! I was so miserable for so long. Even previous to the narcolepsy diagnosis. I am glad to be on the right path now.
I Was Misdiagnosed With Narcolepsy
1 reply to this topic
Posted 16 April 2012 - 12:11 AM
I am glad to be on the right path now.
I'm glad you are, too! I often wonder how many things I've been misdiagnosed with (I've heard doctors say plenty of times, "It seems like you have this..." when I don't exactly fit the textbook definition for something, almost as if they're trying to convince themselves), but in the end, all I want to do is feel better. Thanks for sharing your story so others may potentially benefit from it!