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New here.. Not sure of diagnosis.
Fri, 02/16/2007 - 14:15Topic: New to Epilepsy.com
Hi everyone,
On January 29th, 2007 my husband found me having a tonic clonic seizure before he left for work. I had been sleeping and I woke up to him telling me that we had to go to the ER and that I had had a seizure. I thought he was crazy. I finally snapped out of it and realized I had bit my tounge and my whole body ached.
Other then having 2 febrile seizures when I was younger, this is the first seizure I have had since (im 29).
So far the CT and MRI scans came back normal. According to the neourologist, the EEG came back as abnormal showing epileptic spikes. Does this mean it is a diagnosis of epilepsy? I know its a dumb question but I was shocked that the EEG came back abnormal and I didnt ask. So I honesly dont know if I have epilepsy. I feel weird calling the doctors office to ask but I know I eventually will.
What do you guys think? is one seizure and an abnormal EEG enough to diagnose eplilepsy?
Other then that things have started off rough. I ended up with the Lamictal (seizure medicine) rash. It was pretty bad. So they have now changed me to Keppra. So far so good on that one.
Well, I guess that is it. The only thing im nervous about is having another seizure and being home alone with my kids (11,5 and 2). Not being able to drive for 3 months insnt too much fun either.
Thanks
Heather
Comments
Re: Re: New here.. Not sure of diagnosis.
Submitted by phoebea on Mon, 2007-02-26 - 15:03
Hi,
I've also been diagnosed as PROBABLY having seizures-- is that unsatisfying or what! I felt sick like I was going to throw up or pass out, and thought the latter had happened because I woke up on the floor but my fiance said I had a seizure. And I got whisked off to the ER-- do they always load people up with dialantin? I felt horrible. My MRI, EEG, and CAT are all normal, but I did loose consciousness and my bladder. Its happened 2 or 3 times before but I was alone and thought I'd fainted. My fiance said that this time my arms got stiff and I made these noises and the doctor thinks that they're likely seizures. So I've lost my right to drive for 6mo. and he's started me on Keppra which makes me feel tired, sad, and a little nauseous-- I don't really know if its the meds or just the realization that my life has changed.
I feel like a definate diagnosis would be easier to accept. I'm having a hard time accepting that its true, that the medicine is a good idea, and what to tell people-- how long can you pretend that your car is in the shop? Loosing your license means loosing your privacy. If I lie then I feel shitty, like I have something to hide but I don't want to share this with everybody.
My fiance, family, work and the friends I have told have all been great but I'm still searching for peace of mind. I'm having my family physician refer me to another neurologist for a second opinion, its all I can think to do. Any ideas?
Re: Re: Re: New here.. Not sure of diagnosis.
Submitted by Emeria on Mon, 2007-02-26 - 19:35
"I don't really know if its the meds or just the realization that my life has changed."
I know just how that feels... its a hard pill to swallow. I'm 3 years in and still coming to terms with it.
It sounds like being referred to a neurologist is definitely the right thing to do. Depending on the severity of your case, and how well you stay controlled on your meds, you could definitely be driving again before too long. Just gotta check the rules for your state. I live in California, and I was unable to drive for awhile when I was first being tested and diagnosed, but the DMV returned my priveleges to me after making me do a driving test (which I thought was pretty ridiculous... it wasn't like I'd forgotten how to drive, the issue was just whether or not I could stay conscious).
As far as sharing with others... if you don't want to, then don't. I'm pretty open about it now, but at first I felt just like you. Of course, I'm always sure to tell folks who need to know - such as employers or co-workers who may need to know how to handle things if I do take a fall. But still, the attention you get can be weird. Just remember that for the most part, people really do care and want to understand and help. And if you can't drive for awhile, I'm sure they will understand that as well, and most likely try to help if they can.
Re: New here.. Not sure of diagnosis.
Submitted by Emeria on Mon, 2007-02-26 - 12:42
I'm new here also, but I had to reply to your story because it really hit home, and its nice to read that other people have gone through things virtually identical to my own story. I had my first seizure about 3 years ago (at a wedding of all places, while having my picture taken with the bride!). It was scary and embarrassing, but I was so sure it was just a one-time thing. But still, I was referred to a neuro and given all the tests - CT scan, MRI, EEG. My CT scan and MRI came back normal, which is exactly what I was expecting of the EEG, but instead my doctor said there was epileptic spikes from the temporal lobes. After that he ordered another EEG, this time sleep-deprived (not so fun), and they put these needles in my cheeks to better focus on activity from the temporal lobes. Again.... abnormal. I was shocked. I was 24 years old.... I just felt like I had already been determined to be healthy... this epilepsy stuff couldn't be happening to me. A couple months after that I finally did have a second grand mal seizure. I was alone at the time and woke up very very confused, very sore, and terrified. But it made me accept things. I take tegretol XR now, 800mg daily, and I've been pretty stable for a long time. I have occassional auras (or simle partial seizures) still, but as time has gone on, I've just gotten better and better at recognizing them. Bottom line, I know I am lucky. I know I could be much much worse. I hate that I got this diagnosis, and that I have to take all this medication and always be a little bit scared of blacking out. But its better to know and take care of yourself.