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New seizure diagnosis
Thu, 01/05/2006 - 17:19Topic: New to Epilepsy.com
Hello all
After undergoing testing for the last several months, I have now been diagnosed with a simple partial seizure disorder. I experience very strong, unpleasant odors that nobody else smells, along with a few other strange symptoms. My neurologist called these "uncal fits" or "uncinate seizures," originating in the uncus of the brain.
My problem now is that I don't want to take medication. I am a nurse, and I work in neurology...go figure! I know how nasty some of the antiseizure meds can be, and I am just not willing to start down that road. My doctor informed me that I am taking a big risk because there is a chance that the seizures could progress into a more generalized type. Because my MRI and EEG were normal, I am having a hard time with the idea of taking a tough medication for something I MIGHT have, since it can't be 100% proven.
The doctor wants me to take Keppra, but I have read that it causes extreme fatigue in many people who use it, along with behavioral changes. I can't afford to be tired and feel crappy all day.
Any ideas, advice, suggestions?? I am feeling really frustrated and worried over this whole mess.
Jaimee
Comments
Re: New seizure diagnosis
Submitted by ralphlake on Tue, 2006-01-31 - 20:30
I have a diagnosis like yours but so far no confirmation. I had the EEG today but won't get the results until next week. My experiences sound like yours--smells and strange feelings--though not all of them unpleasant. I too do not want to take the meds and may be willing to give up driving as a compromise In other words not driving is less important (though actually it would mean quite a change to my life) than feeling odd or fatigued). I don't know if it's a certainty that Simple Partial progresses to Generalized. I can't and won't tell you what you should do--but it's a problem I'm thinking about too. I'm not too happy about taking medication. Good luck to us
Re: New seizure diagnosis
Submitted by S Austin on Fri, 2006-02-10 - 19:07
I first started on keppra which didn't work. Next went to depekote which worked but I was fatigued all the time. Now I'm on neurontin
and I feel much better. That is what is working for me.
Re: New seizure diagnosis
Submitted by kayakmom on Thu, 2006-01-05 - 19:44
Jaimie, I am sorry you have had this going on, but it is good you have some answers at least. It can be hard to start meds when you are not really too impacted by your seizures yet. How much do they interfere with daily life? Do they impair you in work or driving? It is a concern that you will not know if they will generalize further and become more of a problem. There are many seizure meds, as you probably know, and they all have some side effects. Some people tolerate Keppra well, while others do have problems. I hope you can find answers. I know my son's seizures grew far worse and tougher to control when he was not treated. We are still fighting for any control now. Best wishes.