Struggling With New Diagnosis

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ekalina

ekalina

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Hi everybody, I'm new to this site. I have a new diagnosis, "primary generalized epilepsy". I'm 28 years old and have been having misc seizures since about 2 years old. In my teens I was told I had JME after my first grand mal. I had lots of tests, meds, and all that. I've been on Lamictal since I was 15.

A few months ago, for the first time in 13 years I had another grand mal. We don't know why, maybe because I was on the generic for a couple of years. Anyway, I'm going through all the tests again. (which induced yet another grand mal)

I feel as if I'm going through this for the first time. I don't know if it has to do with age or what. I'm not as interested in the physical aspects of this illness as I am the emotional effects. I don't know anyone else with epilepsy or seizures. The closest support group is two hours away.

I don't think I'm handling this thing very well. I can't seem to get a grasp. I don't know if I need advice or just to vent, but there it is.
 
Well, you're in the right place. We all know what you're going through, and i think a vent is always good for a person :p

I was diagnosed about 3 years ago and i'm still struggling with it. Anyway, welcome to the site, there's a lot of people who are good to talk to, and very knowledgable on here :banana:
 
I'm very sorry to hear that your seizures have returned.

I think children and teenagers are alot more resilient than adults ... I was diagnosed when I was 17, and although I found it upsetting, I soldiered on, whereas I think if I were to be newly diagnosed now or have a seizure after a long break, I would be extremely upset. Maybe it's because we understand the consequences more as an adult. I completely take my hat off to anyone whose epilepsy isn't fully controlled yet - it must be a nightmare.

Be good to yourself, maybe you might find out that there is a new trigger (e.g. v. stressful situation) that you hadn't experienced before.

I hope you will feel better soon
 
It must have been a shock to have another grand mal after having them under control for so long. It's one thing to know that having another grand mal is always a possibility, but it's another thing to actually have it happen. Hang in there! There are lots of caring people here who understand.
 
You're all very sweet and thoughtful! Thanks for your comments, it helps!
 
Welcome ekalina!

I'm sure it must be tough to have to deal with seizures after a 13-year break. You end up asking a lot of questions -- "Why? Why now?" -- and not necessarily getting answers. I hope you do get a measure of peace soon, but CWE is here for you either way.

Just a thought -- the breakthrough seizure might be due to hormonal changes? Lamictal and estrogen tend to interact, so a shift in one might affect the other.

Best,
Nakamova
 
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