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#325169 - 03/14/10 10:15 AM PTSD and nonepileptic seizures (PNES)
DMCarrollG Offline


Registered: 06/08/08
Posts: 22
Loc: Brooklyn, NY United States
HI,

On December 28th of 2009 I began having severe and very frequent seizures that have been diagnosed as nonepileptic. I've actually had them since I was 20, but they used to only happen when I was "upset" and I wrote them off as "flashbacks" or "body memories." Come to find out that is not quite the case.

I'm posting on here to see if anyone else has experienced these symptoms as a part of their PTSD. I'm currently involved in a clinical trial for treatment of the seizures because right now there is no known successful treatment that has been studied. As seizures, but nonepileptic, these fall right in the crack between neurology and psychiatry. For someone having them- they put me in a whirlwind of a new life condition that has been very difficult. My seizure rate has steadily fallen since the first three week's very high frequency, to post hospitalization's 14-18 per week, to now floating around 4 per week.

I would like to reach out and see who else has experienced this, and ask that you contact me directly or post, as I would love to find some support and perhaps be a part of support for this somewhat rare condition.

Best to all,
David

_________________________
http://davidfmartinez.posterous.com/

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#325201 - 03/14/10 06:46 PM Re: PTSD and nonepileptic seizures (PNES) [Re: DMCarrollG]
Anomalous Offline
Greeter Coordinator
MaleSurvivor
Registered: 03/07/10
Posts: 1341
Hi DMCarrollG,

I used to have "seizure - like" activity before going to sleep.

I never knew there was a specific name for what was happening.

They used to happen daily. For how long, I do not remember.

My therapist at the time said they were seizures caused by severe anxiety.

Before I told him about this happening I had been diagnosed with PTSD.

After doing a lot of hard work in therapy did they diminish.

Actually, they stopped.

I don't remember how long it took.

I just hope they don't come back now that I am starting to work on the SA.


Hope you feel better soon.


Anomalous

_________________________
Acceptance on someone else's terms is worse than rejection.

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#325206 - 03/14/10 07:31 PM Re: PTSD and nonepileptic seizures (PNES) [Re: Anomalous]
Gus Bierer Offline
Junior Member

Registered: 09/16/05
Posts: 160
DMCarrollG


I used to get seizures or tremors in my eyes when people made eye contact with me. It was PTSD, and I am doing much better since i have been on klonopin. I don't take very much because it makes a person sleepy and who wants to drag through the day feeling medicated. So i take .25mg twice a day, and no more eye tremors.

It sounds like fear, nervous disorder, you might try and find out if there is a trigger to the seizures.


Gus

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My Story

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#325218 - 03/14/10 11:10 PM Re: PTSD and nonepileptic seizures (PNES) [Re: Gus Bierer]
DMCarrollG Offline


Registered: 06/08/08
Posts: 22
Loc: Brooklyn, NY United States
To all who replied,

First thank you all so much for your encouragement. I've been very lucky to find an amazing doctor (actually with the first name of Siddhartha!) after spending time in a general psych unit where they told me honestly they knew OF what I had, but had no idea what to do for me - they upped my Klonopin because it is also an anticonvulsant. My new doctor was familiar with them and was a great guide. He also encouraged me to see Dr. Curt LaFrance, who is currently the only researcher of treatment plans for nonepileptic seizures. My count has steadily decreased from the original 15+ a day, to many weeks of 12-14, and recently down to 3-5 a week. I'm doing much better, I'm a part of a 12-week clinical trial for treatment methods (the CBT leg of the trial actually).

I mainly wanted to post to see if others shared having had some seizures. Mine were undeniably large and violent and, well as I've learned, non-epileptic seizures can present themselves in all the various ways as epileptic, from small shakes to grand mal-like.

It's interesting to me now to get the replies, and see that truly this is an under-understood phenomena. It actually is related to stress, but in cases of PTSD the idea is that it falls in the category of a conversion disorder: a psychological distress is presenting itself through neurological symptoms. Well, that is the case even without PTSD, but with PTSD and especially childhood sexual abuse, the pathways and wire-crossings can be...

Well, its a journey. It's a powerful one and phenomenal addition that has really both sped up and in some ways slowed down my recovery.

I suppose some of my posting is to advocate for information about PNES-es and their possible presence. Certainly to offer any validation to someone with sort of "unexplained" symptoms or if they are labeled as "anxiety" or "panic" based, as mine initially were.

The doctor I'm doing the trial with is hoping to write the first ever manual on them which will help. They can come for people in car accidents, later in life with seemingly no trigger, for people with abuse histories, or often without.

Thanks so much for your responses and I'm happy to be back on the forum, and am trying to attend the retreat in New York for one day this weekend. It would be great to become more involved in the community of survivors.

Best wishes,

David

_________________________
http://davidfmartinez.posterous.com/

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