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tle

Tue, 05/02/2006 - 15:17
Hello, I'm new to this and have never posted anywhere before, but I am completely frusted, aggrivated, tired and ready to give up. In short, I started having seizures in 2001- a granmal while my 8 month old and 2 year old were in the bath tub. Doc said stress. Head on collision in 2003- after numerous tests, MRI showed "scar tissue" in temporal lobe. Neuro said TLE. Then meds,meds, awful meds. Gran mals still about every 4-5 months, but I recovered after a day or so of confusion and lethargy. Fast forward to now. After a year, with Zonegran not allowing gran mals, another occurs at the gym. This time however, I'm not ok. This was 9 days ago and I still feel like I'm in a fog, can't think right, memory gone, derealization for the majority of the day. Blood level and EEG normal. I can't work like this (RN), now the new neuro I have says increase meds. Here we go again!!!!! Thanks for letting me vent. Any suggestions to get my head back on straight- I'm listening.

Comments

Re: tle

Submitted by Anonymous on Tue, 2006-05-02 - 15:59
Welcome and glad you took the leap and posted! You'll find plenty of helpful folks here. Sorry to hear of your situation, but glad you are seeing someone about it. Take a browse around the site and see if any of the info helps as you prepare for the doctor visits. Look at the other options for treatment as well as for testing. Sometimes when seizures change, testing to look at what's going on, from where, and how frequently helps. And don't forget to ask plenty of questions, write it all down, and take someone with you to help remember it all. Good luck and look forward to seeing you around the site! Epi_help

Hi.. As someone who had TLE

Submitted by solitude on Tue, 2006-05-02 - 16:58
Hi.. As someone who had TLE seizures all her life, except for 10 years, you appear fortunate. Yet, paradoxically, after having driven (and lost it) I now realize I was very fortunate 'not' to start seizures later in life, since after being controlled I was 'far more miserable' to lose that ability. What many neuros fail to tell you (if they even know) is that TLE is extremely difficult to control. My first recommendation would be to see an epileptologist (= a neurologist specialized in the 40+ types of epilepsy). Neurology is the science of the many problems affecting the brain & spinal cord, so it stands to reason that an epileptologist would better informed on epilepsy. Putting yourself in an epileptologist's care will ensure you get the best possible treatment for epilepsy. I had to go though most of the hospital neurologists, before my GP would recommend an epileptologist. (Before he did so, I did not know they even existed.) The epileptologist had me controlled within months on meds that at been available for years (= the neuros had failed big time). To find an epileptologist..go to epilepsy.com..top of the page..3rd in from the left. Mine is there and I'm in Canada. After 10 years my control dissolved, so I had surgery last January 12th. So far no seizures. But, after experiencing TLE all my life, I'm going to wait a few more months before I call that surgery a success. I hope!! Best of luck and welcome ~sol

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