Living in Fear

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New Member

Date Joined Apr 2012
Total Posts : 4
   Posted 4/4/2012 11:25 AM (GMT -7)   
I've had TLE since I was 3, but never properly diagnosed 'til 13 and only put on medicine regularly since I was 21, over 30 years.

It never really bothered me; I knew when a seizure was coming and could make adjustments. I had partial seizures, where I'd space out, mostly during "that time of month" and grand mal ONLY after periods of great difficulty...terrible stress and/or sleep deprivation.

Keppra was wonderful for me. First time in my life the top part of my head didn't feel in space. I lived in NYC, so didn't worry about driving; walked, took subway. Never had anything injure me. Very independent: graduated magna cum laude, went on to become a medical writer!

In 2010 all changed. I love to cook and never had problems. Apparently passed out over a griddle and severely (3rd degree) burned hand. One finger partally amputated, chronic pain, hand crippled. And now I'm constantly having small seizures w/o warning. For first time in my life, I'm afraid...and I hate it.

I'm afraid to cook anymore; my husband tells me I passed out in kitchen again, but he was there to catch me. But what if he weren't there, or I fell face first into the cacciatore I was making? Am I supposed to live on frozen foods when he's not home--which is almost every night?

What about walking, or traveling alone? I worried about these things happening when I was elderly. I'm in my 50s, but don't think I'm dead yet.

Doctors have fiddled w/my meds all my life. Every time they adjust I tend to have more seizures, at least initially. That's how the hand accident happened. Doc's prescribed gaba to add to my Keppra; thinks maybe it will prevent breakthroughs, but mostly for chronic pain of hand.

Never been afraid before. Appreciate advice, handholding, encouragement, ideas for independence. Thanks! cry

New Member

Date Joined May 2012
Total Posts : 3
   Posted 5/12/2012 4:52 PM (GMT -7)   
Omgoodness I'm so sad to read this story. I'm 26 and just been diagnosed with epilepsy, and the more im trying to cope with it in my life the more I'm fearing it! I'm becoming more scared by it and sad to be loosing my independance because I have had to give up my career and come back home to live with my parents. Im scared to go to sleep at night for having a seizure when I wake up, Im scared of being left on my own. I can understand how you are feeling and I hope for both of us we can see the positive side of life as we go and that things become easier to cope with. I'm trying to give myself goals and confidence boosts as I go along. You have spent your whole life dealing with this, I am sure you have developed wonderful techniques to beat it... look inside yourself at you and dont let the ugly E beat you. Your husband sounds like he loves you and all I hope is that as I get older that someone can take care of me when I have bad days too. ((hug))

New Member

Date Joined Jan 2012
Total Posts : 18
   Posted 5/13/2012 6:04 PM (GMT -7)   
cry you are not alone....i am going through it also everyday. i wont call it fear but anger, frustration. because now my drivers license has been taken away and i am dependent on my husband for everything. my memory has virtually disappeared from my one day to the next --- so he can tell me what he wants and i cant remember the difference. if i want to do something and he doesn't, i am screwed. too bad for me. i can't go anywhere unless it is his decision and he thinks we should spend the money. i can do nothing for me alone or the kids. he is selfish as he was raised as a single child and it has always been about him......getting the point? i can't work anymore because my memory is gone so i get a sort of blame for money issues its just one problem after another ......believe me i know what you mean. i am in my early 40s and my seizures have been getting worse and my meds dont get fixed by the meds.....they dont work. i average between 2 and 3 complex partial sx a day ----those are the ones seen by my kids and husbands b/c i dont know when i have them. yeah i have a lot of fear about getting old too. what am i going to turn into? a nursing home dumped by my family? shakehead

New Member

Date Joined Jul 2012
Total Posts : 3
   Posted 7/12/2012 4:52 AM (GMT -7)   
I too have TLE and until recently lived in a constant state of being red alert. I would shut myself away for days not wanting to see anyone or do anything. A few years ago due to budget cuts at my GP surgery I was put on Lamotrogine and taken off Lamictal. I went to hell and back on this generic version and became very depressed even to the point where I thought I would be better off dead. However, I rang the Epilepsy Helpline (I live in England) and explained to them what was happening and they said under NICE guidelines epileptics can have branded meds instead of generics. I went back to my GP and insisted that she give me Lamictal and not Lamotrogine. I had three absences during the first 3 days of taking them but I am now going about 4 - 5 weeks totally free. I also take magneium supplements currently 500mg a day which has really helped. I am not on a constant state of red alert anymore, only when I have had an absence seizure when I have rubbed my face for about a minute my husband says. I still get extremely tired after an absence but I do feel slightly more confident and I am not depressed anymore. My depression was caused over my constant fear of having an absence in public. Things are getting better. My husband knows when I'm tired when I tell him 'my brain has fried today'. Never give up on going back to your Doctor, they're the ones who can help. Keep a diary and show it to them. My memory is poor but I can cope with that I just write notes in my iphone now. I know a couple of days before I am going to have a few absences as my speech ends up muddle up. I have to think first about what I am going to say but I know when this starts to happen I have to be careful and try to relax and get plenty of sleep. Hope this helps.

Regular Member

Date Joined Jul 2012
Total Posts : 80
   Posted 7/12/2012 7:33 PM (GMT -7)   
I know the fear. My fear isn't so much of having a seizure. But having a seizure in front of someone that can't cope emotionally with, not only seeing someone have a seizure, but also not moving objects out of the way that the person could injure themselves on.

Brain Aneurysm, Hydrocephalus, Epilepsy

New Member

Date Joined Jul 2015
Total Posts : 3
   Posted 7/7/2015 8:39 AM (GMT -7)   
im so afraid to go to sleep at night because i recently had a seizure and i dont want to go through that again, i shake and i feel tremors in my body (seizure like symptoms) and i freak out. it gets to the point where i go to my mother and ask her to give me this pill my neurologist prescribed me (seizure preventative that also helps me sleep) i am so scared that i will have another seizure , this is me seeking advice on how to sleep without fear of having another seizure. it is affecting everyone around me and it is scaring me pls help with advice and opinions thankyou

New Member

Date Joined Jul 2015
Total Posts : 3
   Posted 7/7/2015 8:41 AM (GMT -7)   
sorry i didnt mean to send the last post it sent twice

New Member

Date Joined Oct 2015
Total Posts : 13
   Posted 10/24/2015 1:14 AM (GMT -7)   
My wife burned her hand 5 years ago and I still remember the feeling of OMG. I just want to scream from the rooftops if you have Epilepsy cook on the back burners. It reduces the chance of being burned by 90%. She is doing well and we still take turns watching her cook just in case... Be safe...
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