My doctor told me I have E.

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It started a month and a half ago when I went to urgent care with arm and head jerking and now the nuerologist has confirmed that I have partial epilipsy. He did this with my description of my siezures and my wifes description, and a mri, and eeg, and a cat scan. The eeg showed no epilitcal curve(?) but was abnormal since I have brain damage from an accident 40 years ago. I am now 54 and I really believed that epilipsy was a scaring monster I dodged years ago. The doctor told me I had 25% of getting it. I don't think he also counted in the chance of getting it over time. But now I have it. Talking to the nuerolgist broke down my last little bit of denial, I really was hoping to go in there and have him say I was faking it or something like that, but no he confirmed my fears. I am glad to share on this forum, it is another step of acceptance for me, one more tool to put to use when I need it. I would like to thank all the people who write on these forums, it was of great beneifit for me the last 6 weeks and will continue to be so.

Comments

Re: My doctor told me I have E.

Submitted by tina2 on Fri, 2006-08-11 - 17:33

Kevin, I am 46 and hav had a stabile life for several months now. You will feel much better with it after the initial scare is over. Learn to live as normal as possible. Don't dwell on it. This bothers my family that I am so non-schalant about having it but I want to be normal and i find this is the best thing. I am religious about taking the medicine (tegretol) and follow the doctors orders. Every 6 months I remind him that I need a Tegretol (blood test) level to make sure I stay within the tolerance. I'm doing great. I will say a prayer for you and I hope you feel better soon. :)

Re: Re: My doctor told me I have E.

Submitted by Kevin on Fri, 2006-08-11 - 19:08

Thanks for all the great comments. I am starting to calm down some and am starting to feel better. It is like for at least that the bark is worst than the bite. I am on tegertol and find I am improving in other areas than just the lack of S's. It is good to read about others here and there coping skills. One thing that has surprised me is the total lack of compansion from my nuerologist. Not that he is uncaring or anything like that, just the matter of factly type of attitude. O well I still think he could done a good job, and I am not having more siezures, which is a big plus!!

Re: Re: Re: My doctor told me I have E.

Submitted by gretchen1 on Sun, 2006-08-13 - 19:00

Hi Kevin - This always gets me but I read it, experience it myself constantly, and that's the way neuro's treat us. My big beef, and I've been to several neuro's from moving, is how much they don't tell us. If I hadn't of joined an E forum? I'd know next to nothing about this except what I've read. Then I'd wonder what haven't I read I should know. I raised a son who had E since he was 7 weeks old and NOW it scares me spitless how little I knew about it. I have an excellent epileptologist. He's really been through it with me but he's too far away to see as often as I have to see a neuro. So, I see a local neuro, so far my most favorite of the ones I've seen, and the two of them coordinate my care - which works. But he is SO calm sometimes I want to shake him awake. We're going to have a confrontation when I see him on the 16th. I have had 14 AED trials with just horrible side effects. Some of them have put me in the hospital. One put me on a stupid mental health unit because I was hallucinating so badly. He STILL wants me to try another one and frankly I'm not emotionally up to it. Literature states if you try 3 and have as bad side effects as I do, none should be tried after that and he wants me to try number 15? I have the script filled but so far I just can't make myself go through this again. So we ARE going to talk. Like you said how can he not HEAR me or SEE what these things do to me? On the other hand he knows how much fluorescent lights bother me and without saying a word I always go in the same exam room because he bought a regular lamp to put in there - just for me (smile). You'll have your ups and downs and to me? I see in me and others it's normal. I now am normally pretty ok with my life but then something new comes up or something worsens or my epilepsy morphs and I have to go through the fear/anger/depression thing again but I do know now, I always come out the other side too. It helps me immensely to be on a forum. I don'tk now where else I'd get such support. I do go to a support group but it's not as open as a forum. Gretchen