Fear of seizures

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Billyboyboo

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I have my seizures under control, but I'm afraid of having more.
I also have PTSD, Depression, and I can't seem to pull out of the fear of having more seizures.

Anyone else have intrusive thinking about your seizures?

How do you cope?

Thanks, Billy
 
I know what you mean, Billyboyboo. Sometimes I feel really scared that I'll have another seizure. The siimple partials bother me less, the complex partials really upset me. The doc told me that when I'm scared about it it's a form of anxiety, which I can get from seizures or meds.
 
I don't think there are easy answers, since we tend to condition our bodies and brains to be vigilant about potential seizures. But it might help to also condition ourselves to be confident about being seizure-free. One way to do this is through positive visualization -- essentially meditating over and over on a seizure-free life. It can be as simple as taking 5 minutes every day to sit or lie down, close your eyes and picture something like this: Iimagine a dark gray box where you've put all your seizures. You close it up tight, wrap it in a million layers of duct tape, set it down behind you and start walking down the road towards ___________ (fill in the blank here with your favorite place, activity, people, color, music, etc.). You can turn and look at the gray box from time to time as it gets smaller and smaller. But you should definitely focus on the fun, bright things getting closer and closer. The next time when you meditate, the box is already closed and you're already on the road leaving it behind. Maybe one or two looks back to see it receding in the distance. And the next time you've arrived at your happy destination; the box isn't even a speck. You can write your own narrative, but you get the idea. It doesn't have to be complicated, and it doesn't have to be long. It does help to do the visualization regularly, and at the same time of day.
 
You're not alone. I feel the fear way too much. I tell myself I'm just being paranoid but still feel afraid. I'll try visualization again - use to do that for stress before I was diagnosed. Best of luck, hope we both get a handle on it!
 
Thanks for your replies.

Yes it's Anxiety.

I can't get having my next seizure out of my head :einstein:

Thanks for the tips and the feedback.

I'm not in this alone.

Billy.
 
You have Epilepsy, it doesnt have you!!

I know exactly what you mean about the aniexty that comes with having seizures! I was terrified to go into school incase I had one in class but eventually I thought, well... if it happens.. it happens!! I know its hard :( Chin up!
 
A decade ago while on dilantin, prior to switching to keppra and topamax, I used to have days where fear of seizures or anxiety was common, then would leave me alone. I wrote these occurrences in my epilepsy diary and now only need to do this rarely in comparison. I could find no way to control it. Taking lorazepam sometimes helped a bit, but did not control this. These are rare events now. They do not happen every month. Lorazepam was stopped with the change of meds. I assume my fear/anxiety was due to abnormal activity. It was not a daily occurrence.

Derealization? During some simple partial seizures at this time I would often be uncertain of where I was and whether to trust my surroundings or not. I would sometimes talk aloud to explain to anyone who might be there what was happening. I am grateful that these seizures in general, the ones involving my emotions seem to be better controlled by my new meds.
 
Wow, it took reading that a couple times to realize that it wasn't ME who posted it. I was just wondering whether to post or not. It really gives a whole new meaning to 'Did I do That?' Wow, that was weird! :huh: Nice name by the way, DayDreamer.

I used to have anxiety really bad. I'd have an anxiety attack for fear of having a seizure, then it'd get so bad, it'd cause a seizure. It was really hard to figure out what was going on. I took meds for a while to control the anxiety attacks.

The main cause of anxiety for me was being afraid of having it happen in a public place. Letting other people see, the public shame. After a while, I figured,y'know what? I've gotta put up with everybody else's crap. They can put up with some of mine. I saw how many other people weren't ashamed of things such as yelling kids, a bad hair day, the brakes on the car squealing, etc. Why should I be ashamed? That's Life. **it happens. (That sounds really mean, but it helped me.)

I've found what worked for me to help with the derealization was to try to remember the reality then, in that moment. I was questioning nearly everything later, when it was happening, and that'd give me a bit of reality to hold onto. It let me know what was really real.
 
I had a partial seizure.

I see the doctor tomm.

Thanks you guys. :shake:

I'm at a confusion with this.

Billy.
 
I go to the doctor tomm.

I'm hoping he pushes my Neuro appointment up.

I may go to the ER if I have another one.

Thanks for all your help.

Billy.
 
i completely feel you. my paranoia and fear is increased for days and weeks after i have one and i have horrible anxiety attacks. but as the time goes by and i am seizure free i tend to lose that fear, but because i have tonic clonics, if i happen to jerk my body really quickly or even go into an area where i seized it throws me right back into anxiety. the only thing i can tell you is just to remain calm. the more you fear and the more anxious you become, you can actually put yourself at risk of throwing yourself into a seizure. the brain is a very powerful thing. not sure if this is true or not, however danny glover is a person with epilepsy and he says he completely controls his seizures with his mind. so, its your choice. you can use your mind for good or bad (sounds like a cheesy superhero line, i know)
 
The seizures I hate the most are the ones that involve the emotion of fear. In comparison I do not mind bodily convulsions or familiarity. Sometimes out of the blue I become anxious of seizures for no reason at all. I assume this is a very minor seizure as I have seizures that have fear as a symptom then sometimes have automatisms with my hands and mouth and other body parts. The only time I have generalized tonic clonic seizures are at night. I have simple partial and complex partial seizures during the day and/or night. I do not usually fear them or anything else. The idea of most anything doesn't phase me. Then hu oh, I feel anxious and closer to seizures. This feeling of anxiety can last a variable length of time. I think it's due to my amygdala misbehaving. I felt badly enough in the past to go stay at the hospital. I am grateful these events are much better controlled, less severe and less frequent.
I hope all my events have a simple cause found for them and turn into a memory.
 
I'm so glad you started this string Billyboyboo, it is so helpful to hear everyone's situation/feeling about this. I know this sounds stupid, but for the last few weeks whenever that fear comes over me I recite a line from Dune - "fear is the little mind killer, I must not fear" several times. I'm not sure if it has done anything but I seem to go past it and focus on other things.
 
Yes. I have been having a problem with this too. My seizures have all been in my sleep, so I lay in bed thinking about it every night. I recently talked with a Hypnotherapist about this, she had me do an EMDR session with her just a few days ago. Too soon to really know if it is helping.................
 
Yesterday I went shopping I was so scared that someone would whisle and set me into a seizure that I was shaking all over my body. To the point you can see it. Yes I am deathly affraid of mine and fear them very much. I like the post of the duck tape boxs, I wished I read this thread before leaving my house.
 
In general I only have the anxiety at certain places or certain times. I always have them at beauty salons, so going to have my hair cut or nail done, worries me. This started even before I knew what was wrong. Now that I am on medicine, I don't always have seizures when I go, but there is still the fear. The problem I am having now is that I have many of my seizures at night and in the morning. Many happen right as I fall asleep or just after. When this happens, I end up awake, and cannot go back to sleep, because then I feel so wound up. I'm not sure why, because in general the seizure do not scare me, and I am not out in public where anyone will see me. This is something new that I have not had in the past.
 
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