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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 abcfruman on Tue, 2012-02-28 - 21:22
Hi Tara, Epilepsy can get worse over time, yet can get better. My seizures are the same, as well as how many I have. What seizures do is kill brain cells. And the medication ( what-ever one is on ) can slow ones brain down and also kill brain cells.. Memory problems, ect ect..Lets just say I had an I.Q of 125 and now 96.My doc. once told me having a tonic-clonic seizure kills as much brain cells as meds over time..But I do take a lot. I dont know how long " over time means"..Is it a year or a month..And all of us are different. It stinks but it could be worse..I try to tell myself that every day. Good luck to you

Re: Does Epilepsy Get Worse With Aging?

Submitted by Brian3D on Wed, 2010-03-24 - 19:25

 In my personal experience epilepsy got better then worse. I first had seizures when I was 12, took meds that controlled them until I was 20. I went off meds and seemed to have a little trouble only at night but that was it. When I was in my mid 40's they came back with a vengence. After waking up late one morning on the floor, with my face against the bed post-I looked like a looser in a boxing match- I knew it was time to get back on meds (duh!). I've had about every type seizure (mostly at night), but the absence type that come out of the blue during the day scared me out of even trying to keep my drivers license. At 53 I'm taking a pile of carbamazipine every day, which sortof controls things.

 It's different with everybody, I pray that it only gets better with you.

Brian.

 In my personal experience epilepsy got better then worse. I first had seizures when I was 12, took meds that controlled them until I was 20. I went off meds and seemed to have a little trouble only at night but that was it. When I was in my mid 40's they came back with a vengence. After waking up late one morning on the floor, with my face against the bed post-I looked like a looser in a boxing match- I knew it was time to get back on meds (duh!). I've had about every type seizure (mostly at night), but the absence type that come out of the blue during the day scared me out of even trying to keep my drivers license. At 53 I'm taking a pile of carbamazipine every day, which sortof controls things.

 It's different with everybody, I pray that it only gets better with you.

Brian.

Re: Does Epilepsy Get Worse With Aging?

Submitted by tara michelucci on Wed, 2010-03-24 - 22:21
Thanks for sharing your story with me Brian. I'm hoping it gets better too - maybe it just got worse for being off my meds for a few months...don't know. All the best, Tara

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