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Narcolepsy Or Dissociation?

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#1 Sleeepy



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Posted 04 February 2011 - 11:26 PM

I am so confused and can't decide what this is. I have been diagnosed with Narcolepsy. Based that I have cataplexy attacks and that I have EDS. My REM was to be off key because I was on high levels of Effexor when I did the sleep study. I first went to my sleep specialist after many years of being tired, thought to be caused by my PTSD and the depression that accompanied it. Then one day a few years ago I just collapsed right down after getting upset with someone and required stitches in my head. That's when I had to stop blanking out so much. They took my license away. And disabled me. But now I'm so confused because I'm facing a diagnosis of a dissociative disorder to accompany my Narcolepsy and I'm wondering if to begin with I was facing what's the new term for hysteria? Or if it was narcolepsy? Because how do you define a cataplexy attack? Everyone describes them differently. Mine start from the top and run down my body. My head, eyelids drop. Then my shoulders and arms. Then my back arches over If I'm sitting. And sometimes my legs give out if I'm standing, not always though. I feel it pays to be hyperextended, because they lock easily.

I do have other symptoms of narcolepsy that can't really be explained by something like hysteria. Like major interrupted sleep, night is day and day is night, hypnagogic hallucinations, excessive, excessive daytime sleepiness, past what depression would cause, extreme muscle weakness on certain days I can't control. And doing things like dropping things. For example I may pick up a glass, it may move in my hand, I get scared I'll drop it, and then I drop it from being scared, because I've lost muscle function in my arms and hands. Does that stuff happen to anyone else? But mainly what worries me, is that before I go into a cataplexy attack I can sometimes catch it. Or other people can notice. I start staring off into nothingness. And people will say "Chelsea... you're tired." It feels like I've completely lost reality at this point. And then I'll either have a sleep attack or a cataplexy attack. But I know staring off is a sign of dissociative disorders. And they say you're not supposed to be able to catch it.

I'm guess I'm just really concerned and questioning that if it's not rare enough to Narcolepsy with 1/2000, then I must have hit one hell of a crappy jack pot getting two rare disorders that are pretty close in symptoms. =/ It's not impossible. But questionable.

Any thoughts for me?

#2 guimauve



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Posted 05 February 2011 - 11:18 AM

Hi Sleeepy. I'm sorry to hear you're having such a worrying time.

Your experience sounds very much like N and C to me.

When people call you out for staring into space, I would guess that you are experiencing microsleeps. This is where your brain slips into sleep for a few secs or a few mins. You usually look awake during such episodes but have no awareness. Some people carry on with whatever they are doing at the time (automatic behavior).

When I'm heading for a sleep attack it's very obvious by my face. I go pale and I look exhausted, and other people comment. I also have that feeling of losing reality. So it sounds 'normal' to me!

As for others being able to tell when you're about to have cataplexy... I saw a documentary about a teenage girl with cataplexy and her mother knew when she was going to have an episode, she said you could tell by her eyes. In the film she even said to her daugher 'you're going to have one now aren't you'... the daughter said no (in a typical grumpy teenage way!) and sure enough a few seconds later she went over. It was on Discovery - I think you can find it on youtube (title was something about waking up in a morgue...)

I can stop cataplexy if it is due to anger, as long as I am quick enough... I make myself think of something else, then the attack limits itself to wobbling rather than falling. From laughing I just fall.

I've heard people say that people who fall with hysteria rarely hurt themselves because they still have the natural reaction to put their arms out to break their fall... whereas with cataplexy you just go down, there's not much you can do to help yourself because your muscles are too limp. Incidentally cataplexy is sometimes described by doctors as descending paralysis and indeed when I have a full body collapse it seems to start at the head and work down, the fall feels kinda slow. So again I can empathize with your experience.

Good luck and keep talking

#3 Sleeepy



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Posted 05 February 2011 - 03:28 PM

It's funny you said that about the documentary and the mom. It's always my mom who says it too. And my sister in law(who's a mom). But mostly my mom. They say my eyes get glassy. My mom knows when to follow me into grocery stores, and I'm standing there wanting to pull my hair out, because she's stalking me around the corner to make sure I haven't fallen, because I insist that I'm really just fine and if I fall I'll just get up and if someone finds me then I have a medical ID bracelet and it won't be the end of the world. I empathize with that teenager. :D

But yes... maybe it would help me to understand what hysteria is like. I haven't really done much if any research on it. Like understanding about the instinct to catch oneself, etc. I just don't want to go treating things that don't exist. I'm starting xyrem soon. The last thing someone who actually has hysteria from a dissociative disorder needs is xyrem. And since the only test that can semi prove narcolepsy is the MSLT and mine will forever be off as long as I am on effexor. Unfortunately... that will be forever. My body is so addicted to effexor it's pathetic. A horrible doctor had me on 600mg at one point. I tried to titrate off for the MSLT and I was on the ICU for a week and half. :wacko: I know they do some test, like a spinal tap or something for patients with cataplexy background. But those aren't even always certain.

#4 guimauve



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Posted 05 February 2011 - 05:13 PM

Yup, it's definately a mom thing... mine's the same!

Goodness, it sounds like you had a really rough ride with the Effexor. The MSLT isn't a great test anyway. As far as I know the spinal tap and HLA test are the only other options, and like you say, they're not certain either. And I guess even if you did get some kind of positive test for Narcolepsy, it wouldn't necessarily mean you didn't have dissociative disorder anyway... :S

I guess what you need to look at is the risks of xyrem for someone with dissociation problems, weighed up against how much your n and c is affecting your life, and perhaps most importantly what your support network is like. If you have a good personal and medical support network and you're living around people you trust, this might be a safe time to give xyrem a try, slowly and carefully. If that support isn't there, maybe this isn't the right time for you. That's not to say you can't try it at a later date... a no now is not a no forever.

#5 kiragrace



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Posted 07 February 2011 - 10:19 PM

I am not a doctor, but in my own personal opinion, "hysteria" is somewhat of an outdated and probably overused diagnosis for when people have symptoms that cannot otherwise be explained. I don't doubt that people have it, I just think that its probably more rare than even narcolepsy.

I can't say whether you have it or not. But I just hope you aren't being diagnosed with it because you've had problems with PTSD and depression, mixed in with narcolepsy. I'm sure with those things combined it could look a lot like hysteria, but it could just very well be narcolepsy with cataplexy and depression/ptsd........not hysteria.

I believe there was a post either on this site or another sleep disorder sight about a young girl that doctors were thinking it was dissociative disorder and it ended up being narcolepsy with cataplexy.

and someone did mention testing reflexes during a cataplexy event because (I think, but not sure) that a person with narcolepsy doesn't have normal reflexes during an event, but a person with hysteria would.

#6 sleepy zzz

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Posted 08 February 2011 - 04:22 AM

My daughter was diagnosed with dissociation (conversion) please see pass thread and after a very long journey we have discovered it was narcolepsy all along. Dissociation is a terrible disorder and I would not wish it on any one. But the treatment plan for it will not work on someone with narcolepsy. (As we discovered you just get worse). We had two MSLT tests before it showed up positive for us the first one was mucked up because of medication withdrawal. The second test was a true test and it finally showed what we had been searching for years.... Answers .....

I hope this helps you a little and know you are not alone.

#7 mika



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Posted 08 February 2011 - 12:24 PM

You mentioned PTSD. Are you a veteran? If so, the VA has been prone to misdiagnosing through DSM-IV (Diagnostic and Statistical Manual of Mental Disorders). Is the diagnosis of dissociative disorder based on the symptoms you discuss here? To me these symptoms are typical of N & C. Is it safe to assume that the diagnosis Dissociative Disorder is from a psychiatrist, as opposed to another professional in the mental health field?

Dissociation is a partial or complete disruption of the normal integration of a person’s conscious or psychological functioning. Dissociation can be a response to trauma or drugs and perhaps allows the mind to distance itself from experiences that are too much for the psyche to process at that time. Dissociative disruptions can affect any aspect of a person’s functioning. To me this is just another word for PTSD.

I know how unsettling this can all be. I've had N & C since returning from Desert Storm. Symptoms appeared within a year of my return. Your hypnagogic hallucinations & excessive daytime sleepiness are characteristic of N. When you couple that with depression, it becomes that much worse. Also, much harder for a true diagnosis of other signs & symptoms you may be presenting.

And doing things like dropping things. For example I may pick up a glass, it may move in my hand, I get scared I'll drop it, and then I drop it from being scared, because I've lost muscle function in my arms and hands. Does that stuff happen to anyone else? Yes, this has happened to me as well. My C is confined to my left hand and arm, as well as my drooping lip. Posted Image

I do there staring off in to nothingness as well. Micro sleep hits while I am doing something and it can happen. I was bending down to pick something up my grandson dropped and didn't get up right away. My mouth was open Posted Image and I was just staring. My daughter tapped my shoulder and asked if I was okay. I came out of it and stood up. Freaky stuff but for PWN it is all part of the day to day world (at least for me-can't speak for everyone).

Can you have 2 major disorders occur at the same time? Absolutely. But I know staring off is a sign of dissociative disorders. And they say you're not supposed to be able to catch it. What do you mean by this? I know this is overwhelming. Knowing you are not alone may or may not help. As hard as it may be to believe, you will be okay in the long run. It's just getting there that is rough. Posted Image Let me know what you think. Take care.

#8 Sleeepy



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Posted 09 February 2011 - 10:14 AM

Thanks for all the replies.

I am not diagnosed with hysteria, I was just hoping that it wasn't true. (Or maybe hoping it was? Idk whichever is easier to deal with :) ) And the dissociative disorder is pending.

From what I've read from all of you is that PTSD (and Dissociative disorders) are often mixed up with Narcolepsy. And I can see why this would be and it makes a lot of sense. I am not a veteran. I think I'm the only one in my family who isn't. I started getting both the PTSD symptoms and Narcolepsy symptoms at the same time. Age 16 or so. I am now 23. I have PTSD from "repressed memories of childhood abuse". Which could very well be true. But I also had an eating disorder. (Bulimia. I binge ate constantly, but I was a dancer at the time and couldn't afford to gain weight). If I'm not mistaken narcoleptics are known to be binge eaters? And from the symptoms I experienced I was honestly fed a lot of lines about childhood sexual abuse and it's prevalence with eating disorders.

This is the basics.

Symptoms of PTSD

Dissociating (Loosing time, not being aware, not feeling present).
*Extreme Social Anxiety
*Other extreme, unwarranted phobias
Easily startled
Eating disorder

Symptoms of Narcolepsy

Eating Disorder
Extreme Daytime sleepiness
Disrupted Sleep
Micro Sleeps
Automatic behavior

Another thing that is warranted to point out is that unfortunately before the narcolepsy was caught I spent a good bit of time on psych units for my eating disorder and depression. I haven't seen one of those places for 3 years. But the two that I have stared didn't show up until after those ordeals were over. 15 or so of them, because they couldn't fix my everlasting depression. And when I tried to refuse all the meds they pumped into me they court ordered me, strapped me to beds and injected it instead.