adjustment to seizures

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hello! I am Ken and I started having status epilepticus 1 year after brain surgery. My first one happened 6 years ago and i awoke in the ICU.
I have had 6 in the last several years.
Dilantin and lamictal seem to control them (none in 3 years). Unfortunately I think about having another one every day.
Is this typical?
 
Hi Ken - Welcome to CWE.
I am not one of the surgery experts here. My daughter is not interested in discussing this.
What I have learned though in our short stint with seizures, and learning more about the brain, nothing is typical.

May I ask what your surgery was for?
 
I hope you get better, and there are periods of our lives when we are thinking about a seizure coming, when I was 20 I used to have one every three monthes, and when the "third month" was coming I was afraid of the next one. Now I do not.
 
thanks

great to hear from all of you. i tried to start an epilepsy/seizure disorder support group here in the eastern panhandle of west virginia-no luck.
this forum will be a great help to me.
in answer to the question of what type of surgery-i had a craniotomy (sounds like frankenstein or dracula) in order to remove a benign growth deep in my brain. as i mentioned, the operation was a success but i started having these ultra-horrendous seizures (each lasts more than 30 minutes).
i think about this all the time even though i have no warning and am unconscious during the seizure.
i have tried therapy and anti-depressants but whenever i am out in public i think about it. i am not embarassed about it but just fearful. i don't understand it because i am in no pain and don't remember anything.
any thoughts?
 
This is what happens to my daughter. She also has no warning, but she has only had one status seizure.

She is currently seeing great results with neurofeedback. I have read that it can even help with those that have brain injuries. It helps to stabilize the brain, and teaches it how to function better.

http://www.eeginfo.com/research/headinjury_main.html
 
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Hi Ken, welcome to the forum. :hello:

I think everyone has to come to terms with the fact that they may not have as much control over their mind/body/life as they think. Losing that illusion can be unsettling.
 
thanks

robin and bernard-your responses about my condition were very helpful.
It is amazing how soothing and encouraging it is to be able to speak with others who are totally familiar with seizures.
thanks again,
ken
 
Welcome to CWE, Ken!

Honestly, I think we all (at least I do) as ep patients (or caregivers) worry about when the next seizure's going to strike. It does constantly weigh on my mind, too, I'll tell you. My very life is controlled by E. It's depressing sometimes.........:ponder::rock:
 
kr9943 said:
robin and bernard-your responses about my condition were very helpful.
It is amazing how soothing and encouraging it is to be able to speak with others who are totally familiar with seizures.
thanks again,
ken
Click to expand...
I use to send Rebecca off to school wondering if that was going to be a day that I would be called. Back when they were happening three times a week, I was always on guard.

Now since neurofeedback, I see her walk away and I breath a sigh of relief. I know for most days she is fine. I still make sure when she is going to be in unknown territory, to make sure she has her medical bracelet on. I just don't feel the need to discuss with everyone what to do IF...

I think we all need to take each 15 minutes, of every day, and make them the best that they can be, knowing that there will be bumps in the road.

Perhaps if you keep a journal each day, it might give you some tell tale signs as to what you do or think prior to a seizure. There might be some similarities (or there might not), but it is worth a try. Then you would have something to work with, to change the direction of the "patterns". Believing is half the battle.
 
Hi Ken! Welcome to CWE. I have tonic clonic seizures. And, until recently, they hadn't been under as good a control as I would like. :) So I was having anxiety too. So is anxiety about "what if I have a seizure" normal? I think it depends on each person. Some people have their seizures completely controlled (using meds or other alternative treatments) (That was me for 9 years...) While others don't. So, I decided to do something, instead of just sitting and worrying. (Not good to worry....stress can trigger seizures. That and it's not good for my hubby's emotional well being either.) I started finding out about alternative treatments and decided to try using vitamim supplements to help my meds be more effective. Now it's been about 2 months since the last seizure. (Which is good...) I think it might help if you decide to take charge and do something. It might be starting an exercise program, changing your diet, or checking out alternative treatments to complement your meds. The thing is, you need to start taking charge. You are not your seizures, and they should not define you.
 
outlook

i agree with what many of you said. we don't have to be defined by our having a seizure disorder. it is hard for me to keep that in mind especially since i won't be driving for 6 more months (due to my seizure).

i disagree with a comment one of you made about medication. my understanding is that meds are not a certainty in controlling seizures.
they obviously make a tremendous difference but there is no guarantee.
i am real good about taking my meds, getting enough sleep, not drinking, etc.
all the things that could lower the seizure threshold.
i am rambling somewhat but it is amazing to chat with others who know what i am talking about first hand.

again, people are puzzled about my dread of another one. "you are not in pain" or "you don't remember anything". How can you explain to them?
i have been advised to apply for social security disability. i recently retired and put in my papers for regular social security but several friends suggested that i ought to file for social security disability. I think i am the oldest member here-however, i am young at heart.
by for now,
ken
 
kr9943 said:
i disagree with a comment one of you made about medication. my understanding is that meds are not a certainty in controlling seizures.
they obviously make a tremendous difference but there is no guarantee.
Click to expand...

Not a certainty in my daughters case. I believe they increased seizure activity. They made a tremendous difference in a very negative way. Of course we had to go through the hell to see that truth.

i am real good about taking my meds, getting enough sleep, not drinking, etc. all the things that could lower the seizure threshold.
i am talking about first hand.

ken
Click to expand...

This is great, and will always serve you well.
Are you aware of nutritional changes that are also helpful?
 
Ken,

Thinking (or worrying) daily about having seizures is not uncommon. I attribute my concerns to uncertainty. What is going to happen this time when I'm out in public? What will I do? Will someone help me? What will they think? Will I be safe? Will I hurt myself or end up in the hospital?

While I am a very social person, I also like the "safety" of my home and my support system.

Because I have daily seizures (praise God no longer grand mals), I carry thoughts of epilepsy with me everywhere I go.

Thinking outloud (or over the internet) is good...it helps to see what's on your mind right there in front of you!

Take care of yourself! -Julie :)
 
thoughts

well i used to think about having seizures but i got so used to people around me thinking when im gonna have a seizure for me. someimes looking at me , asking me if im ok and every time they ask me i get so aggrivated and ask them "are you ok cuz im fine" it just really pisses me off even though their intentions are good . so i decided just to forget about worrying about it so i can try to lead an at least a half normal life.
 
I have frequent absence seizures which I have never worried about until recently. When I visited my neurologist at the beginning of the year, (fed up of them after 20 years) I asked if I would ever get to the point where they would be controlled??? she answered something like - I really do not know what else we can try, we have tried several medications and none of them have worked, they seem to be resistant to meds, which could mean because absence's are a generalised seizure the possibility is there for me to have a tonic clonic and this now plays on my mind everyday, as I have never had one and do not know what it is like. So now I am paranoid, thanks Mrs neurologist I was ok before that visit. You are not alone in your everyday worries, I think it is fairly normal.
 
kr9943 said:
hello! I am Ken and I started having status epilepticus 1 year after brain surgery. My first one happened 6 years ago and i awoke in the ICU.
I have had 6 in the last several years.
Dilantin and lamictal seem to control them (none in 3 years). Unfortunately I think about having another one every day.
Is this typical?
Click to expand...

It is perfectly normal for a responsible person to worry about something as life altering as this. Try to identify and eliminate triggers and consider wearing a Medic-Alert bracelet or carry a card in your wallet.
 
Hello Ken!
Welcome to CWE. I hope you feel at home and comfortable. Sorry to hear about your situation. I had the brain surgery on May 22nd of this year. No seizures so far. It all started at age 3. I really hope to not have anymore but who knows. I just try to stay positive. I wish you the best Ken.
 
Hey Ken

:cheers:

Sorry, I haven't welcomed you sooner. I must have missed your original post. Anyhow, welcome now and I hope you enjoy CWE.

I have had E for 27 years and I describe it as a spring winding up. Right now, I am at almost 5 years since a seizure. Before that, I never made it past a little more than 2 years with lots of auras in between.

It always seems like the longer I go without a seizure, my head feels like a spring that is getting tighter and tighter, waiting for that next tonic-clonic. Even though the seizures are horrible events, I do get a short period of relief when I start to recover like the tension has been released and the pressure is gone. You can probalbly imagine how I am feeling now coming up on 5 years without a T/C.

This site has helped release some of the stress of that tightening spring and wondering when it is going to snap again.

In short - what you are feeling is experienced by many others.

:cheers:
 
Crazy Monkey said:
I have frequent absence seizures which I have never worried about until recently. ... she answered something like - I really do not know what else we can try, we have tried several medications and none of them have worked, ...
Click to expand...

EEG neurofeedback. It worked for my wife. She used to have multiple daily absence seizures but hasn't had one in over 10 years now thanks to neurofeedback.
 
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