Recovering from a traumatic experience: fear of having another seizure

Posted by Zeke @ehowey18, Feb 19 8:48pm

A few years ago I started having seizures. We couldn’t figure out why I was having them, and they put me through every single epilepsy medication. None of the medications helped, and The seizures became more violent and more frequent. I was pretty much incapable of thinking at this point, and I was just worried about survival. My parents were taking care of me but it all seemed hopeless. Every day, all day I would just think about when I would have my next seizure. It almost became relieving to a certain extent because it temporarily halted the overwhelming anxiety about when the next seizure would occur. About three years ago, my dad was online trying to figure out why I was having these seizures when he stumbled across a solution. He found a doctor who created special contacts that filter out red light. We drove eight hours to meet the doctor, and I received the contacts. Since that day I have not had a single seizure. I feel normal again physically. My brain never changed though. Every day all I can think about is when I will have another seizure even though it is unlikely that I will ever have another. I also struggle when someone near me has a seizure, one time I lost my vision completely for a short period of time because someone had one when I was nearby. I haven’t told anyone about this and I’ve been hoping that I can solve this without having to see a therapist or doctor. This is affecting my social life along with my life at school and my relationship with my family. I’m not sure what the clinical name for what I’m going through is, but I figured that it is probably similar to PTSD. I don’t want the rest of my life to be like this. I just want to go back to thinking as I used too: not having to worry about the next time that I’ll have a seizure. Hopefully, someone can help me find a solution. Thanks in advance!

Hello @ehowey18 and welcome to Mayo Connect!

I'm happy to hear that you have found a cure for your seizures but I also understand your fear of their returning. Once you've had a serious health problem, it is hard not to worry that it will return. Those of us who have had cancer treatment face that same fear on a regular basis.

You said in your post, "but I figured that it is probably similar to PTSD," that certainly might be true. Have you considered talking with a trained counselor regarding these fears? It may be a good option for you. You articulate your feelings quite well and that is a good basis for counseling.

Will you give it some thought?

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@hopeful33250

Hello @ehowey18 and welcome to Mayo Connect!

I'm happy to hear that you have found a cure for your seizures but I also understand your fear of their returning. Once you've had a serious health problem, it is hard not to worry that it will return. Those of us who have had cancer treatment face that same fear on a regular basis.

You said in your post, "but I figured that it is probably similar to PTSD," that certainly might be true. Have you considered talking with a trained counselor regarding these fears? It may be a good option for you. You articulate your feelings quite well and that is a good basis for counseling.

Will you give it some thought?

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Yeah, I probably should see a counselor about this. I'm just hesitant because I'm the only person who knows about it, so I would need to first tell my parents. I'll look into counseling. Thanks for the advice!

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You are a brave person it will be a scary incident to go through for anyone at the same time you are lucky also for having such a caring parent who did not leave the your ailment un attended but kept on trying to find a solution to the problem and definitely delivered now coming back to the recent development in my opinion it is quite natural for you to feel this way you have come out of a very difficult time your parents are your strength but you need to be as strong in your belief that the worse patch of your life is over talk to your parents about your fears be open about it talking to your loved ones help a lot then you can also find out about people who have had similar experiences and try to learn from them but at the end of the day it’s only your strength can overcome this fear

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Hi, @ehowey18 – other members on Mayo Clinic Connect who have experienced seizures can tell you better than I, but I don't think that fear of having a seizure is unusual. Please meet @jakedduck1 @jenfossbru @jdernburg @lynette1975 @davidinvegas.

I know that as a mom, I'd want to know if my son was experiencing post-traumatic stress disorder (PTSD) or similar. How do you feel your parents will receive the information that fear of a having a seizure is causing you significant trouble?

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Yes, so my son suddenly started having seizures at 17yrs and took a few months for epilepsy diagnosis. He had a lot of worrying & fears about next one. We did go to therapist and it helped give him tools to use to be social & live life again. It is so important to address! As a parent, I did not want his life to be isolating & full of worry/sadness. We did on line research on bio pages to find a good fit. Best of luck! Jennifer

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Hi @ehowey18
I completely understand your fear. I have extreme anxiety about having another seizure. I was seizure free (controlled with meds) for 16 years and then I had a grand mal out of the blue. I have an appointment with an epileptologist on Tuesday to try and figure out things. I have been taking an anxiety medication that helps short term. Once we get things somewhat controlled I will start visiting a counselor if I can get a ride lol. Make sure to do some research about the counselor. You need one that specializes in this area. Maybe ask your neurologist for a referral. I'm glad you have some persistant parents. Best wishes to you! 💜

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@ehowey18

Yeah, I probably should see a counselor about this. I'm just hesitant because I'm the only person who knows about it, so I would need to first tell my parents. I'll look into counseling. Thanks for the advice!

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@ehowey18 Zeke, it sounds like your parents have been a part of your support system from the beginning. You owe it to yourself to build on that support, and they would certainly want to know your fears. They may already have an inkling that you have hesitations for "normal" life, but have been waiting for you to come to them. Let them continue to part of your journey, and I hi hope you will let us know how things turn out for you.
Ginger

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