Have you gone a day without thinking about your epilepsy?

[girlwithadog]

Do you ever go a day without thinking about your epilepsy? Do you ever forget you have it for a bit?
Since all of this started two years ago I haven't gone one day without thinking about it and OCD mixed with a physical condition like this is no good. I obsess over things and as much as I don't want it to think about it, obsessing over the diagnosis is pretty impossible to shake.
I'm in therapy trying to work on my obsessions but I just want to have one day where I forget I have epilepsy, one day where I can wake up with no concern of having a seizure that day.

I've desensitized seizures as much as I can, with a lot of reading I'm not as afraid of it as I was, but stepping on the concrete, cooking a meal, taking a shower, driving a car... Every time I do these things I fear having a seizure because of the consequences of having one at those times. I've gotten to the point where I hate showering, I get in and out as soon as possible. Got my license back two months ago and have only driven up the road three times since, I'm putting off driving. I just want to know if one day I will get to the point where I'm not so afraid and I actually go days without thinking about it. Is this possible?

 

[Crash]

I think taking anti epileptic medication morning and night ain't a great start to forgetting things,but i do know where you are coming from.I've certainly gone the most part off a day and weeks without worrying about having a seizure,but it',s usually gnawing away at the back off my head for the most part.Or pings back in when i least expect to.

But the longer you have it,the easier it is to get to grips with,therefore making the worry not near as bad.Well thats my take on it.

Although,the medication is meant to mess with your mind and memory.Unfortunately this does not seem to be the case with actually remembering epilepsy,just every bloody thing else.But shit happens,right?

 

[valeriedl]

As Crash said the only reason that I think about my epilepsy every day is because of taking my meds. I take meds 3 times a day and that's the only time I'll really be thinking about it.

The only times that I think about actually having a seizure are when something stressful or upsetting happens, which are major seizure triggers for me. When I had to put one of my cats down a few years ago we just knew that a seizure was on it's way. Sure enough two days later it was there.

One other thing is when I go a long time without having a seizure. On average I have 5 seizures a month. At least one every week or two, maybe more. If I go about 3 weeks without having a seizure we know that I'm probably going to end up having one and I always do. I hope it's not just because I'm thinking about having it though.

I've desensitized seizures as much as I can, with a lot of reading I'm not as afraid of it as I was, but stepping on the concrete, cooking a meal, taking a shower, driving a car... Every time I do these things I fear having a seizure because of the consequences of having one at those times. I've gotten to the point where I hate showering, I get in and out as soon as possible. Got my license back two months ago and have only driven up the road three times since, I'm putting off driving. I just want to know if one day I will get to the point where I'm not so afraid and I actually go days without thinking about it. Is this possible?

How long have you had epilepsy?

I've had it for 10 years. At first I used to be afraid of many of these things too, but it was more my family making me afraid because they didn't want me doing them. The only thing that I don't like to do now is use the stove or oven when I'm alone but I will do it. Everything else I have no problem doing.

I haven't gone long enough without having a seizure to be able to drive. If I were able to drive I'd probably be nervous about it at first. I don't think it would take too long though because I'd be able to I get in the car and go places by myself and do things that I want to do, which I haven't been able to do for 10 years now.

 

[girlwithadog]

Thank you for your responses, I really appreciate it. I'm not 100% sure how long I have had epilepsy. I was in an accident when I was five and some very traumatic things happened, 5 is when I started having gaps in my memory. When I was 15 I finally went to talk to the doctor about it and because of the trauma she thought it was psychological and not medical so I went into therapy and was told for the last 10 years it was a mental disorder. I had episodes where i would drop but they thought it was anxiety or fainting. when I had a tonic clonic two years ago I thought it was my first seizure and was told it was a provoked seizure and I wouldn't have another, 9 months later and I had a drop seizure, was told it was a pseudo seizure and stayed in therapy. Eventually this past march I decided to get a second opinion to be sure it was just pseudo seizures and got an EEG, the first week of April I got the results back and the neuro diagnosed me with epilepsy. Apparently he says I have simple partial seizures too but he can't give me any real details. But these simple partials happen almost every day and often numerous times and feel like the aura I got from the tonic clonic and drop, but very short post ictal phase. So I don't know what is what right now. It still feels new to me but I was diagnosed 3 months ago, I should be over it by now.

 

[valeriedl]

Are you taking any sort of medicine?

If you are having seizures every day it would be harder not to think about it than if you were having a few a month. How often do you have do you have tonic clonic ones.

Three months, that was when you first found out that you have epilepsy? That isn't a really long time to take it all in now that you know what's actually going on, so don't feel like you should be over it by now.

 

[sjconner]

I was diagnosed with seizures 7 months ago and I am still trying to wrap my head around it. I think about it everyday ... multiple times a day. I am taking lamotrigine day and night. My seizures keep changing so I don't know what to expect. I started with simple partials (Dec 2012) and now have had complex partials and one tonic clonic.

 

[masterjen]

When I'm having really good days where I'm feeling great, E. is not at the forefront of my mind at all. Even taking medication twice a day doesn't necessarily make me think about it on these good days, since I take vitamins/supplements twice a day at the same times as the medication. Thing is, though, I have seizures (nocturnal) anywhere from 1-3 times per week and the day following the seizure is a write-off due to after-effects, so I think if seizures were better controlled I would be less likely to think about the condition.

 

[Cint]

Do you ever go a day without thinking about your epilepsy? Do you ever forget you have it for a bit?
Since all of this started two years ago I haven't gone one day without thinking about

Well for starters, I have to take my meds every day to control my seizures, so I don't go a day without thinking about E. And I check out CWE almost every day. My seizures started over 30 years ago and are still with me.

I've desensitized seizures as much as I can, with a lot of reading I'm not as afraid of it as I was, but stepping on the concrete, cooking a meal, taking a shower, driving a car... Every time I do these things I fear having a seizure because of the consequences of having one at those times. I've gotten to the point where I hate showering, I get in and out as soon as possible. Got my license back two months ago and have only driven up the road three times since, I'm putting off driving. I just want to know if one day I will get to the point where I'm not so afraid and I actually go days without thinking about it. Is this possible?

Yes, it is possible, but you have to stop worrying and thinking about the "what ifs?" I cannot stop showering just because I worry that it could happen again. My very first TC seizure did happen back in 1980 while I was stepping out of the shower. When I fell as I was seizing, I fell on the hot water spout and was lying under the running HOT water long enough to suffer 2nd and 3rd degree burns on my back and arm. I was in the hospital for 2 months due to the accident. After I was out of the hospital, it took some time for me to want to shower again, but I do it now with no problem. And I live alone now, too.

I've also had long periods of time where I could not drive. Last December I had been seizure free for a year and was driving when out of the blue, a CP seizure came over me and I ran into a tree, totaling my car. Thankfully, no one was injured. So, needless to say, I couldn't drive again, but waiting to hear from my dr. But I am NOT going to let E run my life, even tho it is a part of my life, unfortunately.

Keep going to counseling and eventually you will get to that point.