Returning after finding the truth

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latwife

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Hi, I joined months ago, with a diagnosis of epilepsy, seizures were not categorized. So with that and 2 MRI's and 2 EEG's returning normal readings as well as the only thing the neurologist felt could be done was increase medication on top of an already large dose, I decided to totally disregard this particular neurologist's finding and wean myself off of the meds (Keppra) and use vitamins to build up my gray matter and hopefully stop the 'seizures' that I was having. It worked for awhile until I found that I had developed cervical cancer. I was also able to find a part time job. I was doing fair well until this happened. But I did continue to have what appears to be psychic seizures. My seizures would happen at anytime and under any circumstances. I at first thought it occurred if I am stressed but I could be just relaxing. What happens (according to my brother) is that I would mention a bad taste in my mouth and fidget with my hands and I began to talk about things that have nothing to with the conversation that I may have been having. What I experience is becoming dizzy, then nauseous and finally not in touch with whatever is going on around me. I have noticed that when it happens if I am driving I am able to focus more on what I am doing that if I was just sitting doing nothing. I am sure that I seem to be just rambling but that is somewhat why I have come back. I have had that surgery for the cancer and that is gone with no radiation or chemo to have to be taken, but I still cannot get back to my old self (the self I was before the epilepsy diagnosis). The scary part is that as much as I denied having epilepsy by turning away from treatment, I am now sure that I do have epilepsy. I am on my third neurologist and the last one says seizures happen from time to time in women my age (54). But I am becoming more and more convinced that this is not associated with my age. I will after the first of the year be returning to this neurologist with hopes that he will get a little more in depth with defining my condition.
 
Sorry that you had to return, but I hope you can find some answers that work for you here. At least we are here for support as you become proactive in your care. Ignoring what is happening only makes matters worse, IMO.

Perhaps there are lifestyle changes that you can consider in the meantime.
Nutritional changes have helped many.

Glad to hear that your surgery was successful.
 
Latwife..........I am 53 and was just diagnosed a few months ago so you aren't the only one! My seizures were a little subtle like yours and I think I had them for years and managed to always explain them away somehow. So I don't think being my age caused the seizures to start but I do think they got a little worse as I got older which made it impossible for me to ignore them. They found a small bit of scar tissue on an MRI located on the right side caused most likely from the use of forceps at my birth or a childhood injury or illness -- we may never know for sure. From what I've read here and other places, temporal lobe seizures (TLE) can be kind of vague in some cases. I have always been a big health food eater -- lots of vitamins, organic food, disgusting vegetable drinks made in my vita-mix blender, etc., etc. and, while I think that has helped as my seizures are pretty infrequent, it unfortunately hasn't been a cure. The Depakote my neurologist put me on has helped me feel better than I have felt in years as the dizzy spells I was having frequently (which I now think are simple seizures) along with migraine headaches are gone. I'm glad you're going back to a neurologist you feel good about. Please keep us updated................Blessings.
 
Thanks for your post. Hopefully I will find out more in the coming weeks
 
... What happens (according to my brother) is that I would mention a bad taste in my mouth and fidget with my hands and I began to talk about things that have nothing to with the conversation that I may have been having. What I experience is becoming dizzy, then nauseous and finally not in touch with whatever is going on around me. ...

The bad taste sounds like an aura/simple partial seizure. The following loss of consiousness sounds like the simple partial seizure generalizing into a complex partial seizure. Have you discussed this with your neuro(s)?

... I will after the first of the year be returning to this neurologist with hopes that he will get a little more in depth with defining my condition.

I hope further testing provides better answers than your first round. It definitely sounds to me like you are experiencing seizure activity.
 
Keep us updated. I sincerely hope you get some answers. Sometimes knowing is better than not knowing even if it's not what you really wanted to have happen...........

Roxie
 
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