How do you get over the fear of having a seizure?

[Jilian]

I'm still new to all of this. I was diagnosed with epilepsy a little less than a month ago. The hardest part for me has been the fear of another seizure. The seizure that I had that led to this diagnosis left me unconscious for about 5-8 mins; luckily my husband was home to find me. I'm a stay at home mom to 3 young kids. I'm so nervous about losing consciousness when I'm home alone with my 3 year old. I'd like to start venturing out and taking walks again and doing fun stuff but the fear is holding me back. How did you all deal with the fear? I don't want to let it hold me back from enjoying life!

Last night I had one last final before I graduate and the nervousness before taking it triggered something awful. My head got fuzzy, I broke into a cold sweat, I felt dizzy and then my jaw got really stiff. It really scared the heck out of me. I'm wondering if it was a simple partial or if I just got myself worked up and had a mini panic attack. I'm on a really low dose of Vimpat while I work with a new neurologist to get a second opinion. He's thinking that it may not be epilepsy but after this episode I'm not so sure.

 

[masterjen]

Everyone's life circumstances are different, and everyone's seizures are different. But I do know fear, especially at the beginning, is very normal. The more responsibilities one has, probably the greater the fear. I live alone so in some ways my fear is less than yours. But because my seizures occur at might when no one is around, my fear in that respect might be greater than yours. But even so, after almost 3 years of having them, the fear has lessened. Three years ago I never thought I'd be saying that!

 

[Maisy]

Talking too people, my constant seizes are mostly st work I know this is due too fear I wind myself up stress myself out etc, but find just forgetting and just talking helps when in public its pretty much the same I just pretend it ain't there maybe not best way too be but it seems too work if I don't laugh it off and let ut out I wouldn't leave the house

 

[Cint]

Everyone's life circumstances are different, and everyone's seizures are different. But I do know fear, especially at the beginning, is very normal. The more responsibilities one has, probably the greater the fear. I live alone so in some ways my fear is less than yours. But because my seizures occur at might when no one is around, my fear in that respect might be greater than yours. But even so, after almost 3 years of having them, the fear has lessened. Three years ago I never thought I'd be saying that!

I also live alone now. But I've had E for 30+ years so I don't understand your reasoning that just because you live alone, fear is less. And that because your seizures are at night when no one is around, your fear is greater.
A seizure is a seizure regardless of where or when it occurs.

I can't say I'm over the 'fear' of having a seizure, but I have accepted it as part of my life, just as asthma was part of my son's life as he was growing up. We had to deal with his inhalants and the nebulizer treatments for him. I have to deal with many meds, the side effects of the meds, the VNS and all the other crap that goes with seizures: depression, more CP's and TC's anywhere & anytime of day, and I was married to a husband who traveled and lived 1000 miles from family. I have neighbors and friends I tell and who are willing to help me out. But it will always be in the back of my mind every day..... 'I hope I don't have a seizure'

 

[Jilian]

Thanks for sharing your perspective. It's comforting to know that some of you work. I'm most nervous about that. Especially the job interview part. Do you just tell people at work that you have epilepsy so they can help if needed? On one hand I don't want people to think I'm a ticking time bomb but on the other hand it's comforting to know that people know and are there to help if needed.

 

[Maisy]

Mine started at work I have no choice but after phone call I had my perspective has changed in three hours, my fear is now everyones fear I don't want people too feel like that sorry didn't mean too hijack

 

[Chaz1]

wonderful article on fear and please see past the word child, I am Mother to 27year old with E (this library has much good info)

http://www.theseeprogram.com/EParent_2005_Fear_4a.pdf

don’t let fear get the better of you, educate yourself an those around you not to fear but to manage seizures, then you will have less fear too....

hugs

 

[Jilian]

Thanks so much for that article, it was great to read!

I'm thinking that over time the fear will subside. I've already started noticing patterns and triggers and I'm doing my best to lessen them. For me, my cycle seems to trigger seizure activity in a big way but for the rest of the month I'm ok. I have a strong feeling that my hormonal imbalance is to blame here so I'm going to see a specialist and attack this from all angles.

 

[AngelwithDentedHalo]

When I had my Grand Mal, I was constantly scared of having another seizure, afraid to walk too far from home, afraid of being too far from home, worried I'd have one and end up in the hospital like the first time.

The fear does subside after awhile but the thing I do to help the fear is always have my cell phone with me away from home, make sure people know where I am going and have emergency phone numbers in my contacts.

What you can do is if you want to go for walks, go with your husband and take things slow for awhile and if he can't go, go with a friend. Tell your husband or friends or neighbors where you're going and educate your husband and kids if old enough what to do if you have a seizure. Very young kids can be taught to call 911.

When you have things like this in place, it eases the fears and gradually you learn the signs of something happening and can inform your family ahea of time so they can make calls if necessary. Telling the kids is important so they don't freak out when you do have a seizure.

I've never been officially diagnosed as to why I had my seizure so I always wonder when and if I'll have another. Since you have a diagnosis, you learn the signs, triggers and what not and that also helps ease the fears.

 

[JLogefeil]

I have been having seizures for maybe 6 years and I'm still scared of having one. I don't think I'll ever get over it. I'm sure that didn't help, but maybe your stronger then me.
Just live one day at a time.

 

[alice123]

This sounds really strange/Ungrateful but I actually want it to happen either in front of someone or when I'm aware of whats happening and then I can either be forced to get my problem sorted out or I will know for sure I have a problem and will get it sorted for my own benefit.

Every medical condition I have is not understood. I have a mild walking disability and I'm struggling to get help with it because I'm not in a wheelchair. So they don't understand I'm still in pain and if given the opportunity I would walk shorter distances.

Yes I was very scared when it happened first and second time round but then it went to the back of my mind. Now I am scared for when it happens again, but it would be reassuring if I could understand it better!!

 

[Chrisy]

overcoming fear

I struggled with this a LOT at night because that's the only time i've ever had seizures. I had to pray about it and lean on the promises God has for me even including my sleep. I just wanted you to know you are not alone for sure. It's out of our control anyways and if we stress about it, it will probably just make it worse anyway. I hope you are feeling less fearful and I will definitely pray for you!