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Mentally & Emotionally Scarred From Seizure Episodes

Wed, 04/22/2015 - 16:48

Hello all.  I've started a few threads here, and responded to some questions.  I am fairly new to all of this madness.  Anyhow, as many have probably read, I had three, possibly more, grand mal seizures late last year, whereby I didn't regain consciousness until after the third or fourth day in the ICU.  Some of it was probably the anesthetics, and the remainder was probably how my body was super tired after the seizures.  It was a terrible experience, to say the least.  I still feel tired, and my body is completely out of whack.

Anyhow, since then, I feel like I am mentally and emotionally scarred from this.  Something like severe stress, maybe PTSD.  I've always been the type to always push the envelope with things, and now everytime that I do something, the possibility of seizures is always lingering in the back of my mind.  Take walking down long escalators, crossing busy streets, being by myself, one happening at work, one happening in public, etc.  Geeze, I can't do basic things like taking a bath or swimming anymore.  The worst fear is of having one in public, or at work, and urinating in my pants while at it.  That's a double whammy. Seizing and peeing in pants.  

So considering all of this, and knowing that some of you have had the really bad convulsive seizures, how did you guys overcome all this fear?  I'd like to know, because I'm still scared as hell.  

And I really do not believe in psychotherapy.  Doctors would not understand, unless they have had to deal with it personally.  I feel a better connection to the folks here than speaking to a doctor who has never had first hand experience.  

And lastly, it seems that the only folks who really understand are the ones who have walked in these shoes.  My regular doctor told me to dismiss it and that it wouldn't happen again if I were to continue taking the AED medication.  From what I have read, it seems like folks who have had multiple seizures have had more, even with taking the medication.  I can't just dismiss it that easily, like it never happened.  My first one landed me in the ICU for just short a week, with tubes everywhere.  I have to acknowledge the fact that there is a strong possibility that it can happen again, given that my last eeg still showed seizure activity..  

If it happened only once, then I would probably be able to easily dismiss it, but it happened to me a few times in a row without regaining consciousness, and I had to be hospitalized for it.  Maybe the fear is from not knowing why it originally happened.  

I am having an MRI done tomorrow, so I am hopeful that that will be able to shed some light on my situation.  This really sucks. How did you all cope with all of this additional stress?  Thanks!

All the best.  

Comments

Well Pyro a part of your

Submitted by just_joe on Thu, 2015-04-23 - 16:41
Well Pyro a part of your issue could be the need to accept the fact that you have epilepsy. Just because you had theses seizures does not mean you will have more grand mal seizures, I treat seizures like they are blips in time. Sure you could have one while crossing a street. But then you could get hit by a car without having a seizure. Nothing in this life is guaranteed.  The first seizure I had that I knew of was a grand mal. Oh and it wasn't at home. I was in school waiting on the bells to ring before classes. I found out what I did while in it. I also know that they are very tiring. That is because in a grand mal seizure your muscles are jerking with al the strength they have, As for having another grand mal I haven't. However I have had seizures that look just like them. In my Focal Motor seizures that generalized I would go into a convulsion. At times chit happens and yes pants do get wet. Did I let that control me or did I just accept the facts that there is a possibility that I might have one at some point in my life?  I had three, possibly more, grand mal seizures late last year  You can let epilepsy control you and stop doing things like everybody else. Or you can control your epilepsy and do things like you were doing before. Hey I take a shower and have been for 50+ years. I do swim and did 50 years ago but I had people watching out and friends swimming next to me. OI have never driven but I do know how to drive. It that's using common sense and controlling epilepsy. It isn't hard to do if you let epilepsy control you.

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