Seizures

[cog]

Is there anyone out there like me?
This is my first post in this forum. This is very hard for me to do. I am frightened and scared.

*possible Trigger*

I have been diagnosed with Non-Epileptic Seizures (NES). In the past they have called these pseudo-seizures, or psychogenic seizures. I have had all imaginable (and unimaginable) tests and procedures done to me. They all indicate that I have a "normal" brain. But my psychological profile is not normal. It is indicative of a person who has been sexually abused.

My sa started at an early age of 6 by my older brother, when he forced me to perform oral sex on him and his friend. This continued with my brother and it didn't stop until I tried to kill myself 10 years later. I felt so much shame, and guilt at the time that it is impossible to express.
I am now 35. When I was recently diagnosed with NES my world came crashing down all around me. When they explained to me that it was due to the long term sa, I was numb at first and oblivious to what they were saying. When it sunk in, I wanted to die. I didn't want to relive it all over again, and I knew that I would have to. Such misery.
Shortly after I was diagnosed with NES I started therapy. 6 months later I am still in therapy. My therapist specializes in neuropsychology and he has been very helpful in reducing the seizure events.
My wife has also been extremely supportive. My wife is awesome. She is my strength. I literally couldn't have made it this far without her.
Even with all the help and support, I am so lost. I am so emotional. I have developed new symptoms of anxiety attacks, and horrible, horrible depression. I started to take some medication to treat it. After 3 weeks the medication was helping to lift the horrible cloud of doom, but this medication started to trigger the seizures again. The seizures would not relent -- it was very devastating and I had no choice but to take myself gently off of this medication. I have to wait a few more days before considering an alternative medication.
I am still in therapy.
I suffer.
I hurt.
I feel.
I hate.
I fear.
I cry.
I distrust.
I dread.
I tremble.
I shake.
I grieve.
I sicken.
I rage.

I am overpowered by my own emotions. I think they have been turned off for so long, that now that they have "woken up" they are now taking me over. I am overwhelmed. I know many of you have been through this sa, but I feel so alone. I am terrified of what is happening to me physically and emotionally now. It is taking it's toll.
It seems now that the seizures have reduced (they still occur, but not as intensely), I cry more often. I have anxiety attacks. I don't know who I am anymore. I am intelligent and logical (or at least I thought I was), but I feel that I am going crazy. I feel that because of my brother I am psychologically damaged. This is so real and hideous. The horrors of incest are unspeakable. I so much want to feel "normal."

My question is, have any of you dealt with NES? If so have you had any success? What has worked? Is there hope?

 

[brian-z]

I feel.

That is the first step.

There is always hope.

http://hazzland.virtualave.net/survivor/Ordinary_World.wma

No this is image is not mine I took it from the NASA website.

 

[The Dean]

Hi Cog,

I have had three seizures in my llife and the reason for them was clear--two followed a head injury and one was as I was being in withdrawl from a prescription drug. I barely remember them, the ones after the head injury happened when I was unconscious.

Working on your SA is difficult, sure, but it is freeing. I think it helps a lot to know that thousands of men have had the same thing happen to them. The circumstances can be different, but sodomy is sodomy and oral sex is oral sex. If we are not inclined to express our sexuality in those ways they are embarassing and they make us feel some very strange feelings.

Trust your neurotherapist--and be willing to put up with the crummy feelings, and then eventually you will have a day when you will feel some freedom and feel that you have taken away the perps victories. I have not yet had the relly happy sunshiney days, but many guys have.

Bob

 

[blaidd]

Cog, the answer to your opening question is YES...

I did go through a period in which I was having epileptic like convulsions/seizures. It was extremely distressing so I can imagine how it might be for you. I can only relate to you, what happened to me, and I'm just saying here and now that what you are going may be completely different, I don't know, but thought I'd share it with you.

I wasn't aware there was a medical term for it now, as this happened to me around 1995. I think it's great that you've been checked out thoroughly to rule out any organic or medical cause. That's an important thing to have done.

The trigger for me was when I started having my first intimate/sexual relationship as an adult with my then partner. I was 27 and had not let anyone touch me since I was a kid.

I was under a great deal of stress and the intimacy/sex was pressing buttons related to what happened to me as a kid. It usually happened in bed with my partner, and I found myself beginning to shake uncontrollably. It would quickly develop into full on convulsing, or "fitting", as it is sometimes called, just like someone with epilepsy. I was aware of my partner, I was conscious, I could not talk, and my body was doing it's own thing which I felt I had no control over. After it would stop I'd be exhausted and acheing all over, often ending up in tears.

One time it lasted for 40 minutes and my partner called an ambulance. Luckily, the person on the phone was well informed and asked a few questions. When my partner said I was a survivor the person said that it was probably a panic attack, and suggested the best way to bring me out of it was to talk calmly and to ground me in the present. It worked and I came out of it. I have had a long history of anxiety.

Unlike someone with epilepsy, I remained fully conscious and that was the factor that lead to the discovery or judgement by doctors that it was not a medical condition.

I was prescribed Xanax by a doctor, which is an anti-depressant as well as an anxiety reducing drug, however it made things worse. If anything it heighted my depression and anxiety and the siezures were worse. I saw a very good psychiatrist who immediately told me to stop taking the drug.

The whole experience was terribly unnerving and I was convinced I was going mad. It wasn't until I was referred by a psychologist, to a specialist SA therapist that I gained a clearer understanding as to what was happening. This therapist explained to me that trauma can be stored in the body. Sometimes survivors can get triggered and the result is that the memory of the trauma is released in a physical form. Different people react in differing ways.

The therapist used a technique she called "body-work", and unfortunately I can't remember the more scientific name for the therapy. It involved touching with the use if cushions in order to trigger the body memory and was very confronting and upsetting. But the thing was it actually helped me to release a lot of emotional and physical stuff that had built up in my head and in my body. The outcome for me was that I stopped having these seizures and have not been plagued with them since.

Anyway, that is my experience, as brief as I could explain it to you.

It is extremely traumatic to go through this and I am sorry that you have been experiencing them. You are not mad as there are very good reasons as to why this is happening to you, in the sense that it relates to the SA. Hang in there, don't give up you can get through this.

take care

blaidd

 

[cog]

Today has been not so good for me.
I would like to say however that it is reassurring to have support from all of you. I am at least grateful for that.
Blaidd, I have felt very alone and crazy in dealing with this. You have no idea what it is like to know that I am not an island as I have always believed. I guess hearing from you actually was somewhat releasing. To this day I have not spoken with anyone who has had these experiences. Thank you for sharing that part of your life with me.

 

[andrew-almost52]

Hi Cog, Wow! yes, I did have similar problems many years ago. I am 52 yo now. But back about 25-30 years ago, I was diagnosed with idiopathic epilepsy. And quite frankly, I never associated it with sexual abuse. I had seizures during times and periods of my life that were highly stressful in terms of emotional and psychological growth. Interestingly, they were times when I was being challenged to reveal the SA I went through. When I was about 20 years old I tried to commit suicide. I was put into a mental hospital. After several weeks, a very very good shrink started to help me. It was during this time that I developed seizure activity. I had what is called grand mal seizures. My body would be wracked with spasms and my head would be smashing into the floor or concrete. I felt everything and felt nothing. It was a very dangerous and scary time for me. I had very little will to live in those days. The doctors were concerned about a physical causation because it was well documented that I had been badly beaten with baseball bats, lacrosse sticks or whatever came into my mother's hands. So they searched long and hard for brain scar tissue or other evidence of brain abnormalities. There were none. At least nothing physical. But the mind works in funny ways. Among other things, I was a high functioning MPD. One of my selves had a terrible speech defect. He was around for many years. Yet another was a runner. (I was always truant from school and often took off for days at a time when I was a kid). And yet another, probably one of the original and core personalities (a very angry and sick personality) endured idiopathic epilepsy. Luckily, the latter guy didn't stick around for too long, maybe because seizures didn't work too well with the other selves. It sounds complicated and messed up. But its what kept me alive. Fortunately, years of psychoanalysis and luck (I met a lot of great people) helped me find a life and bring together my fractured selves. But I do remember how scary those seizures were. I remember the aura before they hit .... and a strange sense of relief from tension when they were over. Anyhow, I don't think I've been of much help, but at least you know you aren't completely alone in this experience. Peace, Andrew