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Does Epilepsy Get Worse With Aging?

Fri, 03/19/2010 - 01:29
Hi All, First, I should explain that I have been diagnosed nearly twenty years ago with JME, and that it originates in my Occipital Lobe. I experience tonic-clonic, myoclonic jerks, as well as absence seizures. I stopped taking my medications regularly in October last year - and about a month ago - actually, yes - exactly a month ago, had a tonic-clonic. I will not be skipping out on meds because they're expensive anymore. Since I've recovered, and by now my meds are up to level - I am still having myoclonic jerks as well as some issues with my eyes (my doc, who is one of the best - thinks they are likely myoclonic jerks in my eyes due to the occipital lobe origin of my epilepsy). So we've upped the ante and I'm now taking an extra dose of the meds. I went from taking 100mg Zonisamide + .5mg Klonopin in morning and at bedtime (worked like a charm for YEARS) - to now having to add a midday dose of 100mg Zonisamide. It's only been two days of the extra dose. Today, I experienced my first myoclonic jerk in my right hand ever (and they've been happening there the better part of the day) - they always happen on the left. Then in the afternoon, I had a weird visualization (like when you rub your eyes and see bright floaters) of bright lines and shapes - all the while smelling something yucky. I couldn't shake the vision and at the same time I was aware of my surroundings - but having my eyes open was "painful". I'm just wondering if this was a seizure? And why the hell am I having more now than ever? I used to be a serious party girl - you would think I would have had them then?! Does anyone know - as we age can/should we expect our epilepsy to get worse/decline - seizures to escalate or move to other parts of the brain? Thanks for any stories/info you can share! Tara

Comments

Re: Does Epilepsy Get Worse With Aging?

Submitted by tara michelucci on Wed, 2010-03-24 - 00:59
Heard back from my doc - apparently, it can get worse with aging; but it's generally a long-term process. I'm not sure what that means specifically, since I'm 31, and I've had symptoms since 11yo. He did say he assumes the explanation for the new symptoms (smells and hallucinations) mean that my seizure pathway has changed course for some reason or other and entered the realm of my frontal and/or temporal lobes. Terrific. If that's not getting worse with aging - I'm not sure what is? Tara (OP)

Re: Does Epilepsy Get Worse With Aging?

Submitted by jubatum on Fri, 2010-03-26 - 15:41

that sounds like it is getting worse to me??!

I dunno

Is he/she going to send you for tests?

that sounds like it is getting worse to me??!

I dunno

Is he/she going to send you for tests?

Re: Does Epilepsy Get Worse With Aging?

Submitted by tara michelucci on Fri, 2010-03-26 - 21:14
It's pretty complicated. I have no insurance, and my doctor is answering my questions via phone calls/emails. I live in another state, and can't go in for a visit so that he can do a standard check. One of his long-time resident fellows will be heading up the epilepsy dept. at the hospital close to where i live in july - i'm hoping to see that doctor and get help regardless of insurance at that point. I just can't understand people who do not want to socialize health care. Tara

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