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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 Spike. on Sat, 2010-03-20 - 00:02

Tara, what you're currently experiencing is most likely your body trying to adjust to that added midday dose of Zonisamide.

And Kay, some of those "other factors" can be the amount of medication in the body staying in the body for a longer period of time as we grow older. So an increase of seizure frequency or epilepsy appearing to be getting worse, might be side effects from the medication staying in the body for a longer of time.

Bruce. *I'm not a doctor, but the information I share is what I've learned and experienced due to having epilepsy myself.

Tara, what you're currently experiencing is most likely your body trying to adjust to that added midday dose of Zonisamide.

And Kay, some of those "other factors" can be the amount of medication in the body staying in the body for a longer period of time as we grow older. So an increase of seizure frequency or epilepsy appearing to be getting worse, might be side effects from the medication staying in the body for a longer of time.

Bruce. *I'm not a doctor, but the information I share is what I've learned and experienced due to having epilepsy myself.

Re: Does Epilepsy Get Worse With Aging?

Submitted by tara michelucci on Sat, 2010-03-20 - 00:16
Thanks to you both. I appreciate your input and hope there are others who can share further insights. I'm fairly well-versed in med side effects; but the meds (even with the new dose) aren't completely working as well as they used to (100% effective before) - and now, I'm having other kinds of seizures (the smelling things, the visual hallucinations, etc.) Thanks again - I also wrote my Neuro because I always err on the side of caution and trust his opinion. One of the best epileptologists in the field...unfortunately, i now live in another state - so...

Re: Does Epilepsy Get Worse With Aging?

Submitted by Kathy781 on Sat, 2010-03-20 - 10:27
Tara, I can speak from experience that menopause improved my seizures. I went through medications after medications and all of them were just like drinking water. They never improved my seizures. I was always the type that hormones played a part in how many and how severe my seizures were. I couldn't take any type of hormone or any pills with hormones in them. I could always tell when it was "that time of the month" because my seizures would become more frequent and more severe. Once I started into menopuase, my seizures started improving without any medications. Now that I am through it, they have improved so much. Menopuase did for me what medications never did. I told my husband if I had known this, I would have had my "plumbing jerked out" years ago. I never thought that I would enjoy "getting old" but I sure have. Hope you have this good Luck also!

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