Finally! A diagnosis that makes sense...

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N

Nd2sng

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Hey All...

I was diagnosed with TLE in January. I woke up at 3am to my husband gathering clothes and talking to me very gently. He told me that we were going to the hospital because I had a seizure. I remember noticing that the bed was wet, and he was gently guiding me into my clothes. I remember only flashes of the car ride, though I was giving my husband directions to the hospital throughout. I remember being helped into a wheel chair and then I don't remember anything else for several hours when I found myself in a hospital bed.

I was in the hospital for three days, mostly because I was pregnant and they needed to be sure it wasn't a pregnancy complication. After several EEG's and a CT scan, I was diagnosed with TLE, and given a prescription for Tegretol and the name of a neurologist.

Good morning and what??? I was in shock to say the least. I have now been on 4 different medications and getting ready to start a fifth. After discussing things with my neurologist and doing a lot of research, I can see that I have had symptoms and seizures since I was a teen. I have always known that something was not right. I have been treated for migraine, but my aura was actually a seizure. The neurologist I saw as a teen did not catch it. In college I had many episodes of dizziness, fainting and waking dream-like states. The doctors told me I was a hypochondriac and depressed. When I was pregnant with my boys, they told me that my migraines would get better...they got worse and the symptoms were not always truly migraine like. I was told I was depressed.

Now at the age of 32, I have seen scores of doctors, been on a variety of anti-depressants and been misdiagnosed a dozen times. The only thing worse than being called a hypochondriac is being told I have epilepsy, and it actually making sense of my life. So I finally have a diagnosis, why don't I feel better?

I am happy to have found this forum as I don't have many people that I can talk to about my condition or how I am coping with it. So thank you for this really great place!
 
My daughter was told she had Epilepsy, so we tried two meds. Then she was told it was psychological and we took her off meds. Then she was told she has Epilepsy tried two more meds. Life spiraled out of control so... now she is getting better by being careful with her nutrition (and she is not medicated)

Go figure...

Welcome to CWE. I know you will find many here that are very supportive.
 
Nd,

Welcome!

I felt the way you did when I was diagnosed. Finally - a diagnosis that fit! I had this crazy list of symptoms that made me feel like I was literally crazy. I had doctor after doctor misdiagnose me. Then I was referred to an an epi who told me I had temporal lobe epilepsy. I read a description and it fit my symptoms exactly. I was relieved to finally know what it was, and I was stunned.

I thought, "the good news is that I have epilepsy. And the bad news is that I have epilepsy. Now what the heck are we going to do?"

I'm still struggling. I'm so happy to have the seizures relatively under control now. I'm down from 2-3 a day to 1 every week or two. But the side effects of the medication are, for me, devestating. (They aren't for most people, so take heart) Where I am now is hovering between what is worse - seizures or the meds?.
 
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i am with ya

That is me too! The meds are very hard for me to handle. They make me very sick. I can no longer work.
 
I was in our hospital's video EEG lab when I was diagnosed. Shortly after, one of the neurologists stopped by my room to chat for a few minutes. We talked a bit about what had happened and how life would have to change. On his way out, he called back to me, "this is a good thing!"

I'll admit, I wondered how the heck having epilepsy could be a good thing. But then I realized that wasn't what he meant.

You can't begin to fix a problem until you know what the problem is. Finally having a diagnosis, to me, is a great thing. For one thing, it means I won't ever have to question myself again when people accuse me of imagining things or just being crazy. For another, it means we can finally get to work in figuring out how to deal with this beast. For a third, next time I have a seizure at the store and take out an entire shelf of breakables...well, scratch that. At least now I know to keep at a safe distance from breakables.

I'm really weird about the AEDs that were offered to me. Maybe a little afraid, even. I was taking Zonegran and thought everything was fine. But that's the scariest part about it...I was absolutely psychotic and I thought everything was fine. I don't ever want to have to experience that again. I was at the same place, I think, asking myself which would be more difficult to manage; the seizures or the side effects? I'm still pondering that. I discontinued the Zonegran and I'm taking some time to think before I try Lamictal.

I guess what I'm getting at, albeit by rambling, is that you're not alone. It's good to have people who understand available while we work through these things. Good luck in finding what works best for you.
 
same here, I always thought my aura's were migraine related, but my neurologist found out they were seizures.
 
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