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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 Jos on Fri, 2010-03-26 - 10:11

I am a caregiver for my cousin who is now 43 years old - His nuerologist never really showed us or explained much to us over the years - My cousin who had lived with his mother until now was given a "Cocktail of Drugs" w/o doctor supervision - they never made appt to see him and one drug we found out "Keppra" causes extreme behavori aggitation etc. The reason I am explaining this is b/c my cousins seizures increased to where he refused to go out of the house - he was stuck in an induced drug state - I took him out of  his environment and started to get our community involved - regulated his meds and we are currenly looking into better treatment - we still at this time do not have all the answers - but what i've learned is please continue to investigate new drugs - this epilepsy forum is great! I believe your siezures can get worse in time if you stay stuck and become afraid to leave your  house. My cousin has been suffering with this for over 32 years! Will fall up to ten times a day everyday.

 

 

 

Lennox-Gastaut Syndrome

I am a caregiver for my cousin who is now 43 years old - His nuerologist never really showed us or explained much to us over the years - My cousin who had lived with his mother until now was given a "Cocktail of Drugs" w/o doctor supervision - they never made appt to see him and one drug we found out "Keppra" causes extreme behavori aggitation etc. The reason I am explaining this is b/c my cousins seizures increased to where he refused to go out of the house - he was stuck in an induced drug state - I took him out of  his environment and started to get our community involved - regulated his meds and we are currenly looking into better treatment - we still at this time do not have all the answers - but what i've learned is please continue to investigate new drugs - this epilepsy forum is great! I believe your siezures can get worse in time if you stay stuck and become afraid to leave your  house. My cousin has been suffering with this for over 32 years! Will fall up to ten times a day everyday.

 

 

 

Lennox-Gastaut Syndrome

Re: Does Epilepsy Get Worse With Aging?

Submitted by tara michelucci on Fri, 2010-03-26 - 13:33
That's great that you've taken over your cousin's condition. Keppra is the worst drug I ever tried. After a week I told my doc I was going off. I have a very very good doctor - he is in my opinion, and that of the community, one of the best. I don't stay stuck inside for fear of seizures - but I am now limited in terms of my parenting style. I won't go out alone with my two year old daughter in case something happens. That's just practical, though. Thanks for your input and response. Best, Tara

Re: Does Epilepsy Get Worse With Aging?

Submitted by jubatum on Fri, 2010-03-26 - 15:37

I'm experiencing the same thing as you!!! Mine is getting worse NOT better!

I've also experienced the weird visial distortions when I wake up in the morning.. bright lines/bright spots. My scar tissue from a brain injury is in my occipital lobe.  Usually my auras are flashy lights on the left side but these bright lines are WEIRD!

I've had to switch drugs last nov and up doses and just mess around all together.  I was also wondering the same thing is epilepsy got worse with aging,  I used to be sooo controlled.. stay up late drink like a fish. Now I do none of that for fear it will mess with me.

i'm really glad you posted :)

Heather

I'm experiencing the same thing as you!!! Mine is getting worse NOT better!

I've also experienced the weird visial distortions when I wake up in the morning.. bright lines/bright spots. My scar tissue from a brain injury is in my occipital lobe.  Usually my auras are flashy lights on the left side but these bright lines are WEIRD!

I've had to switch drugs last nov and up doses and just mess around all together.  I was also wondering the same thing is epilepsy got worse with aging,  I used to be sooo controlled.. stay up late drink like a fish. Now I do none of that for fear it will mess with me.

i'm really glad you posted :)

Heather

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