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how do i get on with my life?

Wed, 05/25/2005 - 18:47
I'm 22 years old and I had my first seizure at the age of 10.  I had about 4 seizures from the time I was 10 until I was 12.  It took me forever it seems like to get over the fear of seizures.  For a while, I would go out.  All I wanted to do was sit at home.  I knew I had to fight it and get on with my life.  It took a long time for me to become myself again and about the time I was finally back to normal I had another seizure.  I couldn't believe.  I was seizure free for 10 years!  Now I'm back to where I was before.  I'm miserable.  All I ever think about is "wonder if I'll have another seizure."  Also, any uncontrollable movement on my body freaks me out wheter it's my eye twitching or whatever else.  My boyfriend is a very outgoing person but I'm not because of my seizures.  I don't know how to get my life back.  All I do is worry about it.  It's driving my crazy and making so depressed!  I know I haven't had alot of seizures in my life but they have competely turned my life around.  Please give me some advice on how to get my life back to normal.  Thanks

Comments

RE: how do i get on with my life?

Submitted by mommy2kyra on Thu, 2005-06-02 - 18:19

Hi Amanda,

I can understand your fear and anxieity. From my perspective, it doesn't matter whether you've had 5, 50, or 500 seizures in your lifetime..it's still pretty darn scary! You have every right to feel the way you do. Don't let other people make you feel guilty or ashamed of your condition (good, bad, or otherwise). As if it's not bad enough that you worry about having more seizures, you now have to worry about sounding like a wimp in here because you're not having enough seizures to complain?? That's ridiculous. Just take a deep breath, and know that most of us know exactly how you feel. And we're here to help, if we can, because we've been there.

I started having seizures at age 20, shortly after I met my now-hubby. He has been through it ALL with me. Thick and thin, thank god! I was mis-diagnosed (sort of) as having panic disorder, because I was constantly panicking and seizing (complex partials). It wasn't until I was 26, after a tonic-clonic sent me to ER that I was properly diagnosed and treated. And, that's when I began learning as much as possible about epilepsy.

 I figured out that I'd started with a seizure (or two). This scared me, and I began to panic. Then, my anxiety level got so high, it sent me into another seizure. Around and around it went for a good 3 years of me ALWAYS being scared. Seriously, day in and day out. I was too scared to work, too scared to drive, too scared to be alone. You name it! It was absolutely horrible! I saw a psychologist every week when my anxiety hit the peak (from 23-25), trying to figure out what the heck my problem was. Eventually, I learned some relaxation techniques to keep my anxiety level in check. That helped a lot, but I still had nocturnal seizures pre-menstrually and during high stress...we thought they were night panic attacks! Then, one night, I had a grand mal. That was the gate to the truth!

Tell your doctor, family, and boyfriend how you are feeling. My family and hubby have always been very helpful to me. They know "the look" I get when a seizure is coming on. They can then offer physical support (like, when I get weak) and emotional (by telling me what happened, or that I'm okay). Your doctor might also want to try a different medication, knowing that you're scared. Some AED's are also used in treating panic disorder (like mine...phenobarbital), others may make a person edgy and nervous. So, it's definitely worth mentioning to the doc. Also, try to learn some relaxation techniques to help yourself through those scary times. Hopefully, your boyfriend is as wonderful and supportive as my hubby was. Good luck to you, Amanda, I look forward to hearing more from you!

Heather :)

 

 

Hi Amanda,

I can understand your fear and anxieity. From my perspective, it doesn't matter whether you've had 5, 50, or 500 seizures in your lifetime..it's still pretty darn scary! You have every right to feel the way you do. Don't let other people make you feel guilty or ashamed of your condition (good, bad, or otherwise). As if it's not bad enough that you worry about having more seizures, you now have to worry about sounding like a wimp in here because you're not having enough seizures to complain?? That's ridiculous. Just take a deep breath, and know that most of us know exactly how you feel. And we're here to help, if we can, because we've been there.

I started having seizures at age 20, shortly after I met my now-hubby. He has been through it ALL with me. Thick and thin, thank god! I was mis-diagnosed (sort of) as having panic disorder, because I was constantly panicking and seizing (complex partials). It wasn't until I was 26, after a tonic-clonic sent me to ER that I was properly diagnosed and treated. And, that's when I began learning as much as possible about epilepsy.

 I figured out that I'd started with a seizure (or two). This scared me, and I began to panic. Then, my anxiety level got so high, it sent me into another seizure. Around and around it went for a good 3 years of me ALWAYS being scared. Seriously, day in and day out. I was too scared to work, too scared to drive, too scared to be alone. You name it! It was absolutely horrible! I saw a psychologist every week when my anxiety hit the peak (from 23-25), trying to figure out what the heck my problem was. Eventually, I learned some relaxation techniques to keep my anxiety level in check. That helped a lot, but I still had nocturnal seizures pre-menstrually and during high stress...we thought they were night panic attacks! Then, one night, I had a grand mal. That was the gate to the truth!

Tell your doctor, family, and boyfriend how you are feeling. My family and hubby have always been very helpful to me. They know "the look" I get when a seizure is coming on. They can then offer physical support (like, when I get weak) and emotional (by telling me what happened, or that I'm okay). Your doctor might also want to try a different medication, knowing that you're scared. Some AED's are also used in treating panic disorder (like mine...phenobarbital), others may make a person edgy and nervous. So, it's definitely worth mentioning to the doc. Also, try to learn some relaxation techniques to help yourself through those scary times. Hopefully, your boyfriend is as wonderful and supportive as my hubby was. Good luck to you, Amanda, I look forward to hearing more from you!

Heather :)

 

 

RE: how do i get on with my life?

Submitted by fanourios78 on Thu, 2005-06-09 - 06:22
Dear Amanda, Hmmmmn and they say epilepsy and depression are related. Look I've had my epilsepsy, for 12 years, fallen down some stairs the whole bit, it really really helps if you have someone there to be with you and comfort you during those rough times, talk to your boyfriend and work it out! NOW! dealing with this condition alone makes me want to blow my brains out. You had ten years seizure free, I'd love to have one. I think you got a good shot of beating the case as to finding youre cure, and only you can. backtrack to what your life was like during that fantastic decadeyou had, figure when it started leading to this, and change your life back to the way it was, before you end up like the rest of us. By the way little kids are taking presciptioons drugs these days, I see nervous breakdowns happening left and right. Don't feel left out everybody is enjoying life.

RE: how do i get on with my life?

Submitted by angel_lts on Sun, 2005-06-26 - 07:13

Amanda, It can be a number of things. It can be stress, anxiety, hormones, diet, ....

How is your diet and do you take vitamins? How early did your mom start peri-menopause or menopause? What meds did the doctor put you on for epilepsy? YOu said you twitch. WHat type of twitching do you have or shaking? I know my daughter has tics and we give your calcium and magnesium and a good diet when she has them really bad.

Lisa

http://health.groups.yahoo.com/group/EpilepsyApproach/

Amanda, It can be a number of things. It can be stress, anxiety, hormones, diet, ....

How is your diet and do you take vitamins? How early did your mom start peri-menopause or menopause? What meds did the doctor put you on for epilepsy? YOu said you twitch. WHat type of twitching do you have or shaking? I know my daughter has tics and we give your calcium and magnesium and a good diet when she has them really bad.

Lisa

http://health.groups.yahoo.com/group/EpilepsyApproach/

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