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older adults with epilepsy

Thu, 06/01/2006 - 20:12
To anyone over say, my age of 25. I have been having seizures for about 4 and a half years now and I was wondering, are there any long term effects for those of you that have stayed on medication? The Drs think the surgery could help but I am not too eager. So I am curious to see if there is a debilitating difference on your mind/life for those of you with complex/simple partial seizures that have lasted through the course of your adulthood WITHOUT having surgery- or even any permanent affects from the medication. This personal touch of knowing how your thoughts are really coming out of your head 'normally' or not normal enough is what the drs seem to not be telling me enough about. But i suppose normalcy is just boring eh? ;)

Comments

Re: older adults with epilepsy

Submitted by Anonymous on Fri, 2006-06-02 - 10:46
You have touched on a big question and people may have different opinions both ways. While some may say not to worry about ongoing seizures, research is showing that people with persistent research can lead to further problems with thinking, remembering, mood problems, social problems, injuries and other physical problems for example. Not everyone will develop these problems - some people do great, but some can have long-term health problems. The big question, that needs to be answered individually, is who is at risk for developing problems? While long term data is not available on all meds, some of the older meds for which we do have data do show possible long term problems. For example, the medications like dilantin, tegretol, phenobarbital or mysoline can have long term effects on thinning of the bones, and lead to osteoporosis. Take a look around the information section...and look up long-term issues in the search for research articles. I hope this helps give food for thought as people talk to their doctors about individual situations. Epi_help

Hi Epi... re "research is

Submitted by solis on Fri, 2006-06-02 - 11:34
Hi Epi... re "research is showing that people with persistent research can lead to further problems" I assume you meant 'persisant seizures', but I thought it best to ask rather than assume. And no worries, I'm the queen of typos, so please don't take my question as showing disrespect. ty ~sol

Over the age of 25years,

Submitted by solis on Sat, 2006-06-03 - 11:29
Over the age of 25years, eh? Well, given that I'm 52, have had simple and complex partial seizures since I was three (= 49 years), and had surgery less than 5 months ago, I trust I'm qualified. Thoughought my life I was never controlled by any neurologist. It wasn't until I was 39 years old I was sent to an epileptologist (= a neurologist that has further specialized and focuses on patients with the over 40 types of epilepsy) Before this time I had no idea epileptologists existed, and for somone who'd never led a normal (= non seizure) life, it was difficult to complain/explain to neurologists. I didn't need to explain to the epileptologist..she understood exactly what I was experiencing and was amazed I'd never been put on a drug for hard to control patients. After doing the MRI, I saw her again and went on Frisium (along with my Tegretol)and suddenly ..no seizures. I was controlled for over 10 years when, unknown to me, my body became tolerant to the medicaton and I had a 'nice' car crash. Fortunately physically I was ok (and no one else was hurt) but mentally I was a mess. After 10 years seizure free I didn't even realize the cause of the accident..until a few days later my husband told me I'd had a seizure. After being on ten or so seizure meds during my life, when I saw my epileptologist after the accident I told her I'd never trust another medication to drive again. At this point we began testing for possible surgery. Soon after that I saw my family psysician only to learn I had osteoporosis... now known to be caused by many AEDs, but that wasn't known until recently. So, soon I was on osteoporosis meds, but the AEDs I was/am taking contribute towards osteoporosis. Made no sense as both encouraged an opposite reaction. For the AEDs to be most effective I needed off AEDs = another surgery pro I also have tinnitus (permament ringing in my ears) the result of decades on anti-seizure meds. Another sugery pro. Since my surgery I have had no seizures. June 12th will be my 5 month anniversary. Via the surgeon, I've since learned that all my life... I had gangliogloma .. a rare, benign, slow-growing tumor that caused my epilepsy http://www.childrenshospital.org/az/Site938/mainpageS938P0.html The surgeon, who also teaches at the university here, believes I won't have any more seizures now that the gangliglioma is removed. Me? I'm taking it slow as I realize not all surgerys are successful. However, surgery is a chance that few epileptics have..so rather than just deal with meds (which you still might have to do if surgery doesn't work) I'd highly recommed you take the chance. Who knows what they'll discover the meds can also cause? Epilepsy surgery is so much better now than when I was your age. It would have made an enormous difference in my life had I been able to have surgery when I was younger. IMO it is definitely worth the effort to have the surgery as you just might be among the 70%+ that is controlled. IMO, as the odds were in my favour, I'd be crazy not to take the chance. (Good thing I did, as the gangliogloma would only have continued to grow & gotten worse) But, as epi said, the decison is yours to make. Know you have my best wishes whatever you decide. ~sol

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