Fear of seizures is ruining my life

[sunchip]

I have a rare type of epilepsy called sunflower syndrome. Most doctors don't know about it, to me neurologists have been useless and I have diagnosed myself and then brought the info back to them. It is scary because of the fact that not many people know about it. What are the risks of death? Will I ever overcome it? Probably not. I had a tonic clonic when I was 16, almost ten years ago. Ever since then, and since my anxiety levels have increased, I have been TERRIFIED of having another. I mean terrified to the point where if I get less than 8 hours of sleep ill be freaking out because I know that lack of sleep can cause seizures. And if I don't get enough sleep (like last night I only got four hours, and the night before about 6) I'll be a nervous wreck and won't want to leave the house.
I actually have a question though, how much lack of sleep is considered dangerous? I've heard different things, like you should be okay unless you go a couple nights with no sleep at all, to any lack of sleep is dangerous.

 

[Nakamova]

Hi sunchip, welcome to CWE!

I actually have a question though, how much lack of sleep is considered dangerous? I've heard different things, like you should be okay unless you go a couple nights with no sleep at all, to any lack of sleep is dangerous.

Unfortunately there's no single answer and no way to predict for you -- it's different for every person. Everyone has a different seizure threshold, and that threshold can vary over time, in reaction to multiple stressors, in different environments, in response to meds, etc.

Are you on medication? Are your seizures fully-controlled? Do you get auras? Those might be factors in gauging how safe it is to push your current limits.

Another question to ask yourself: Are your anxieties about what those limits are (and about your epilepsy in general) compromising your ability to fully enjoy your life? If the answer is yes, then it's worth finding ways to deal with that anxiety. If you haven't already, you might want to look into therapeutic modes like Cognitive Behavioural Therapy, as well as stress-reducing techniques like meditation and progressive relaxation. If the fear of epilepsy is more crippling than the epilepsy itself, then that is what you need to target and treat right now.

Best,
Nakamova

 

[Sandie]

I absolutely agree with Nakamova on this. It sounds like your fear is causing you more distress than your condition. Therapy would be really beneficial to you.

 

[sunchip]

You're right, it is absolutely my anxiety that is making me miserable. It's just so easy to fear epilepsy though, at least in my case because its "the unknown". But I worry about tons of things. Like I'm going on a road trip in a month and I'm freaking out about having a seizure on the trip. Haha. It's a cycle... Because since I didn't sleep well last night due to anxiety, I'm having anxiety about not being able to sleep tonight.. Ugh

 

[Cint]

It's just so easy to fear epilepsy though, at least in my case because its "the unknown". But I worry about tons of things. Like I'm going on a road trip in a month and I'm freaking out about having a seizure on the trip. Haha. It's a cycle... Because since I didn't sleep well last night due to anxiety, I'm having anxiety about not being able to sleep tonight.. Ugh

Yes, it is easy to fear epilepsy. I've had all sorts of seizures, SP, CP, and TC. Plus I've had a failed brain surgery and now I have the VNS to help control seizures. But I also have traveled with all of this "baggage". Been on road trips and flown. I just returned from a trip. And yes, I have had a few CP's while on a few trips. Even at an airport once. So the more you worry about having a seizure, the more likely it will happen. And seizures beget seizures. Like you said, it is a vicious cycle.

And as Nakamova and Sandy both suggested, it sounds like therapy would be very beneficial for you ASAP.

 

[elis]

When I was first diagnosed with epilepsy my family doctor told my mom and dad that they would have to stop me skiing because it was too dangerous. I was 12 at the time and we skiied downhill. I was having petit mal seizures about 20 x a day and grand mal seizures about 2 or 3 times a year. My Dad said no way. He felt that if he wrapped me up in a cocoon then I would wither away. That it would be better for me to take a fall and have a seizure on the slopes than to stop doing something I loved. So we carried on and I never had a major seizure when I was skiing. I had petit mal seizures all the time so I just dealt with the ones that I had skiing just like I dealt with them when I was walking.

Then I decided I wanted to be a lawyer. At the time I was on really heavy morphine derivative drugs. My doctor told me that I could never be a lawyer because I was too drugged up and was still having seizures. I talked it over with my parents and they said that I could do anything that I wanted to. I graduated from high school, left home at 17 and lived on my own, graduated with a BA and then went onto Law School. By now I rarely have a seizure and I have been a lawyer for 25 years.

Don't let the fear stand in your way. This is a difficult condition but it is no more difficult than MS or diabetes or any of the other chronic conditions that people get saddled with. You and I are lucky because we don't often get seizures, our meds control our seizures. Sure you could have a seizure while you are on your bike and you could get hit by a car and die, but you know what, you could get hit by a car walking across the road without suffering a seizure at all. At least on your bike trip you will be doing what you love to do. Enjoy life, live with abandon and do good. Make the life that the Spirit gave you worthwhile. Experience joy! And have a fab time on that trip. I wish you happiness my friend.

 

[sunchip]

Thanks for the posts guys, really helped.

 

[gigi]

acceptance

I think the advice is great from all these brave souls that are members of CWE. I feel lucky to have found this site. We all grieve from time to time about this disorder that has been thrust upon us. After 45 years I still grieve over the losses that I have suffered from having E but I also celebrate the good that life has given me. My gratitude list is long and takes me away from self doubt although it never goes away completely. It is all relative, some are worse off than others in this life. Concentrate on being good to others and self- the rest will fall into place. Stay in touch!