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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 kay69 on Fri, 2010-03-19 - 20:01

Hi Tara,

I admit I really don't know the answer, and I'm pretty sure doctors don't either, there's just no rules with ep.Given how sensitive brains are, there's always the possibility that your time of meds may have changed things.

The one thing I do know about is the hormone issue with females- again no set rules, but the impression I get from a lot of reading and forum boards is menopause can make seizures better, worse, or stay the same because of changes in hormone levels.

I asked my neuro this a few weeks ago, "can seizures cause more szs", ie are they going to get worse since they've been uncontrolled for so many years. He's pretty adament that isn't the case, but I'm not completely sure I believe him. Mine have definately got worse overall in the last few years but there may be other factors at play there.

So sadly it really is a waiting game for us.

kay

Hi Tara,

I admit I really don't know the answer, and I'm pretty sure doctors don't either, there's just no rules with ep.Given how sensitive brains are, there's always the possibility that your time of meds may have changed things.

The one thing I do know about is the hormone issue with females- again no set rules, but the impression I get from a lot of reading and forum boards is menopause can make seizures better, worse, or stay the same because of changes in hormone levels.

I asked my neuro this a few weeks ago, "can seizures cause more szs", ie are they going to get worse since they've been uncontrolled for so many years. He's pretty adament that isn't the case, but I'm not completely sure I believe him. Mine have definately got worse overall in the last few years but there may be other factors at play there.

So sadly it really is a waiting game for us.

kay

Re: Does Epilepsy Get Worse With Aging?

Submitted by wd123 on Wed, 2012-02-29 - 13:47
I am often wondering about this too. I never had epilepsy when I was younger and it did not start until late 20's. I am now getting more of them and the intensity is worse. I have an old brain injury that is causing issues too. I don't know myself and often wonder if it can get more intense or worse with age. It seems here a lot are saying yes.

Re: Does Epilepsy Get Worse With Aging?

Submitted by El Diablo on Wed, 2012-02-29 - 14:54
I also have JME. I started having myoclonic jerks at about 15 but I didnt know thats what they were. My older sister was diagnosed with JME at the age of seventeen. I had my first and only tonic clonic seizure three years ago at the age of 37. I dislocated both of my shoulders and fractured my left scapula. I was put on dilantin and then switched to depakote. The myoclonic jerks that I had previous to my tonic clonic seizure were pretty severe but I did not have them that often. Since I had my breakthrough seizure as my neuro calls it my myoclonic jerks are daily but less severe. I have them many times a day and in different extremities. For me my epilepsy has gotten worse with age.

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