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Challenging meds situation

Thu, 06/14/2018 - 01:02
I'm 64 years old. I had my first tonic-clonic at 22, but my seizures have always been at long intervals--mostly many years apart. I've tried dilantin (so dizzy I couldn't stand) tegretol (worst headache of my life for ten days) depakote (jaundice) keppra (psychosis) and lamictal, which I tolerated but which didn't change the frequency of my seizures, and which was hellish to withdraw from. Eventually I found that my seizures were clustered around my menstrual cycle, and took progesterone, which decreased the frequency. Then I reached menopause and with one exception, my seizures were all the result of abrupt medication changes. I have carried Ativan to use in case of a seizure aura and that's worked well for me. I hadn't had one in 5.5 years until last Saturday. I had been recovering from having a stent placed in my heart, and it had been much harder on me than expected. I don't have any memory of an aura. I woke up with a bloody mouth, and amnesia. The life I created for myself is dependent on driving, so I need to find an effective AED that doesn't have horrible side effects. I'm especially worried about ones that impact mood and concentration. I'm a writer and my livelihood depends on my ability to think clearly and have emotional access to my art. I'm feeling pretty overwhelmed. I know there are new medications since last I tried one, but that doesn't mean they're more benign. I'm going to have to push hard to get a referral out of my rural plan to an epileptologist, because this isn't a simple case. And I have a bunch of other conditions that now need to be taken into account. I know every body is different, but I'd be interested in hearing if anyone has an AED they tolerate really well.

Comments

I'm 52 and I've now tried 16

Submitted by birdman on Thu, 2018-06-14 - 21:15
I'm 52 and I've now tried 16 different medications for my seizure.  People who witness the seizures only can wonder why you wouldn't take every medication possible to stop those scary events.  But the effects those drugs have upon the mind and thinking are bad.  It seems for me that the better a drug works to control the seizures the more aggressive I become.  But let me live on the edge of having seizures and I feel so good and feel no irritability.  I've read how temporal lobe epilepsy can produce what some call Geschwind's Syndrome.  Two of the symptoms of Geschwind's are hypergraphia and aggression.  It sounds like you have tapped into one of the "strengths" that temporal lobe epilepsy can produce, hypergraphia. or improved writing ability.  It's too bad that the medications you need to control the seizures also diminish you writing ability. I also have "cluster seizures", or seizures which come at regular intervals.  No one can explain why mine occur at such regular intervals.  I have long wondered if it would be possible to just take more medication when the clusters can be expected but that option doesn't seem too practical. I am now pursuing treatment through Responsive Nerve Stimulation or RNS.  Since it is "responsive" and only treats when seizure activity is detected my hope is that I will be able to make due with less medication and their awful effects.  Talk to your doctor about alternative treatments like RNS or VNS.

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