I was diagnosed with narcolepsy prior my DID diagnosis and I was wondering if it happened to anyone else?

I fell asleep at the drop of a dime. Hey I passed the daytime sleepiness (MSLT) test with flying colors.

I would fall asleep at red lights, so I lost my license. I also fell asleep in my doctors office, so that was the last straw that I couldn't have my license.

As I became more coconscious things came through in my dreams. So I had horrible nightmares.

I had episodes similar to seizures, where I would drop my head and not respond. This apparently happens to some people when they switch. I was told it was cataplexy episodes.

So basically my entire DID diagnosis was explained away by narcolepsy. When my inpatient doctor, who specializes in DID looked further into it and collaborated with my neurologist, they found out that it was highly unlikely I had narcolepsy and that the sleepiness is a response to constant switching.

The one thing that proved this is not being on anti psychotics. We couldn't figure out why being on anti psychotics made me LESS tired and produced far less "cataplexy" episodes. Almost none. When usually they're supposed to make you more tired. But the anti psychotics lessened my terrible anxiety, which lessened me switching so dramatically. Valium gave me so much energy and well now I know why.

My doctor said that this will sometimes happen with people with DID and seizure disorders. That they will be told they are having seizures, and without an EEG will be diagnosed so, only to find out that these supposed petit mal seizures are actually a switch.

I think back to my worst time with cataplexy. I had over 30 cataplexy episodes a day. Only to find out that I dramatically switched 30 times a day. NO WONDER I was tired! I felt like I was never awake.

Stimulants also wouldn't help me, they made me worse. Obviously, because they raised my already high anxiety. They were miserable. They kept me awake for maybe an hour or two, but they left this overhang of constant anxiety.

They also tried use GHB, under the name "Xyrem" to treat my narcolepsy. It made me psychotic. Which was a crappy time for me as well. I spent most of my summer in a psych ward trying to get out of it.

I laughed with my DID specialist after she told me "You mean they used GHB to treat my DID? They used a date rape drug to treat my DID?" She laughed with me. It was a funny moment. But a "well finally this makes sense now". I mean what could I do but laugh? I can't go back and fix it.

[bluestate]

Wow! You have been living a nightmare!

I am sure it is difficult to keep working on this, but you appear to be doind a wonderful job. Keep on keeping on. And keep telling us how you are doing.

I care and I am sure others here do too.

[Nsgirl]

[QUOTE=LydiaB;2289139]I was diagnosed with narcolepsy prior my DID diagnosis and I was wondering if it happened to anyone else?

We have some similarities. I was diagnoses with seizures 22 years ago, and BP2 with anxiety disorder, and Narcolepsy 2 years ago. I also was on xyrem but it helped me. It just makes it hard to find the right psych meds because they tend to cause sleepiness and can't with xyrem. So many also claim that they increase the chance of seizures. The doctors for each problems never seem to comunicate so they are all changing meds continually which just makes me feel worse. I understand the frustration of having this weird combo of problems. By the way what is "switching" and DID? I'm a newby here and don't know all the lingo yet.

[quote=Nsgirl;2334607]

Originally Posted by LydiaB

I was diagnosed with narcolepsy prior my DID diagnosis and I was wondering if it happened to anyone else?

We have some similarities. I was diagnoses with seizures 22 years ago, and BP2 with anxiety disorder, and Narcolepsy 2 years ago. I also was on xyrem but it helped me. It just makes it hard to find the right psych meds because they tend to cause sleepiness and can't with xyrem. So many also claim that they increase the chance of seizures. The doctors for each problems never seem to comunicate so they are all changing meds continually which just makes me feel worse. I understand the frustration of having this weird combo of problems. By the way what is "switching" and DID? I'm a newby here and don't know all the lingo yet.

DID is dissociative identity disorder, aka multiple personality disorder and switching is what happens when you switch between alters.

[Nammu]

No idea if there is a connection but I was diagnosed w/ epilepsy before DID and I used to have a backward affect from drugs. Like what you are talking about Valium would give me energy and drugs that were supposed to help me sleep would "wake me up" or "speed" me up. Now that I have been integrated drugs have there normal affect and I have no signs of any epilepsy. Although I still have a problem sleeping. I'm not sure I will ever feel safe when I'm not conscious even though I know I'm safe.

Originally Posted by sidestepper

No idea if there is a connection but I was diagnosed w/ epilepsy before DID and I used to have a backward affect from drugs. Like what you are talking about Valium would give me energy and drugs that were supposed to help me sleep would "wake me up" or "speed" me up. Now that I have been integrated drugs have there normal affect and I have no signs of any epilepsy. Although I still have a problem sleeping. I'm not sure I will ever feel safe when I'm not conscious even though I know I'm safe.

Yes on the backward affect... it drives me up the wall. And it's not like I can drink coffee to go to sleep, because the only reason it works it because it makes my anxiety SO high that I pass out. And that's not fun. And the only reason benzos wake me up is because they get rid of the anxiety that is wearing me out. So if I'm tired because of finals or something, I'm not going to take benzos, that will make me pass out. I only take them if I am tired due to anxiety. I have nothing to take to keep me awake like the average joe. Energy drinks would knock me to the floor in ten minutes straight.

[Nammu]

You are very smart! I tried to use coffee way back when I was 19--8 or 9 years before I got my official diagnosis. I slept for more than a day. I thought I was late for work, only to find out I had missed work, school, a whole day! Thank goodness I had never done anything wrong before so I was just given a warning and my supervisor thought it was because I was going to both work and school full-time so I was just exhausted.

Originally Posted by sidestepper

You are very smart! I tried to use coffee way back when I was 19--8 or 9 years before I got my official diagnosis. I slept for more than a day. I thought I was late for work, only to find out I had missed work, school, a whole day! Thank goodness I had never done anything wrong before so I was just given a warning and my supervisor thought it was because I was going to both work and school full-time so I was just exhausted.

Yea side stepper I've had a lot of experimenting with this, because I was given the narcolepsy diagnosis and consequently I was given every stimulant known, adderall, concerta, nuvigal, provigal, etc, etc, etc because nothing worked and they made me way way more sick. I came to figure out that they were increasing my anxiety, which was increasing me switching and I'll quote the DID source book when I put this down

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.

this is what happens to me, the trance. I also get extremely tired, easily when I switch a lot. I mean that's a lot of work.

[Molly alter]

Originally Posted by sidestepper

No idea if there is a connection but I was diagnosed w/ epilepsy before DID and I used to have a backward affect from drugs. Like what you are talking about Valium would give me energy and drugs that were supposed to help me sleep would "wake me up" or "speed" me up. Now that I have been integrated drugs have there normal affect and I have no signs of any epilepsy. Although I still have a problem sleeping. I'm not sure I will ever feel safe when I'm not conscious even though I know I'm safe.

I was diagnosed with Partial Complex Epilepsy ( Temporal Lobe) about 17 years prior to my DID diagnosis. The connection makes sense in a way. I would trance out, change my voice and appear very confused and disoriented. My diagnosis is new and I am frankly not even certain that it makes sense. I do know I have played different characters, very different. I just chalked it up to creativity and coping. I really can't say that I have awareness of alters specifically. But i know I have gone by the name "Molly" a playful and resiliet Southern Belle. Complete with different story of my life and an excellent southern accent. I do things I forget... big things... My T believes my trances could be switching and I am in therapy and seeing a neurologist...

[PurpleFlyingMonkeys]

i'm in a similar boat, it's funny I was trying to write a post about DID and seizures before even seeing this but my phone wouldn't let me...

I just started having seizures. The first was a grand mal while under the influence (and honestly this was the first and only time, lesson learned) of a hallucinagenic (mushrooms). Two weeks ago I was doing nothing (controlled or medicated) early in the morning on the way to work. I started to feel anxious and was thinking "there is no way I can go into work like this" next thing I know we are far down the road and my fiance is holding me up telling me I had a seizure (not sure of the technical term for this one but where you go blank and motionless and collapse, I fell into his lap. When he picked me up I went stiff) it lasted a couple minutes before collapsing again and coming out of it.

My therapist (first appointment was yesterday) is relatively convinced that the DID and seizures are connected, he specializes in DID so he may be onto something. Either way though, my last thought before going into that one was "There is no way I can go to work feeling like this". Typically when I either say "I can't handle this" or feel that way, I black out. So I avoid doing so, it was early and I didn't even think much of the comment but it probably was what set it off...

I also noticed the connection that the same day as the second seizure, was the same day an old abuser returned to my town. And I've been forced to sit face to face with him on more than one occassion since and I knew that would happen.

I don't know what the connection is but since you are the first and only person I've ever seen other than myself link these connections, I thought I would share my experience with you as well. I'm going to look up cataplexy episodes now and see if that's similar to what I've been feeling.

It goes back and forth with some doctors, some say it's seizures even though the blackouts can last a full year, others say it's DID. My t was the first I've ever heard say it could be both. It's a new look and it's been 20 (since developing DID) years of not knowing so I'm open to anything and everything that could get me better.

You can always pm me, I think it would be nice. These seizures terrify me, to talk to someone who experiences something similar is nice. I used to fall asleep all the time in McDonalds drive throughs, even while driving on numerous occassions. After the first seizure they suspended my license for 3 years but I already had stopped driving due to the sleep issue.

Please pm me if you need anything, you're most definately not alone.
Add- My fiance used to laugh and take pictures of me. I would drink a mountain dew and within 20 minutes, sometimes less I was passed out on the couch. I've fallen asleep with mountain dew in my hands so many times. It seems to make me tired after the first small jolt. But I've learned that even non caffinated sodas give me that jolt, it's the carbonation. But once the carbonation wears off, I'm more tired than I was to begin with. I stopped caffeine a few weeks ago because of its effects with my anxiety, and somehow not drinking it, I'm more awake and alert. Strange lol