Thursday, July 29, 2010

[epilepsy] Re:questions

 

Hi Amelia,

My daughter Megan is also 21 and has epilepsy. You both like martial arts, too, so I thought you might enjoy chatting with each other. As it happens, Megan is also on Topiramate, an add-on AED for her as well. She had been on Lamictal, but it did not work well for her, so she is now back on Depakote with the Topiramate.

Megan has not had very noticeable side effects from the Topiramate, and her seizures seem to be under complete control with this medicine combination. That said, Topiramate is the generic name for Topamax and Topamax has gained the nick-name "Dopamax" because of all the memory problems it can cause. You can see the list of possible side effects and other infomation on the drug at the link below, but I'll mention here that it can cause "speech problems, confusion, memory problems, trouble thinking, and loss of coordination."

http://www.nlm.nih.gov/medlineplus/druginfo/meds/a697012.html#brand-names

I would give the drug until you see your neurologist to see if the side effects subside or remain a problem. He or she can prescribe a different add-on AED if the side effects continue to be severe for you. Drugs affect each person differently, so what works for one person may be awful for someone else. It can take some time and trying a few medications before you find the most effective drug(s) for you.

You didn't mention what type(s) of seizures you have. Megan has what is called Juvenile Myoclonic Epilepsy (JME), although her presenting seizure pattern was not at all typical for this particular type of epilepsy. The brain wave patterns she had were classic JME though, which is why they gave that diagnosis, even though she neer had myoclonic seizures until much later. She started having seizures at ten. She had generalized tonic clonic seizures and one or two generalized atonic seizures at that time. Her seizures were completely controlled with Depakote when she was young, so after a year, we weaned her off of the drugs, with her doctor's approval. She didn't have any seizures until just before her first menstrual period, when she was 13. Hormones apparently played some part in her seizures starting again. She went back on Depakote, which controlled her seizures very well.

We switched from her Pediatric Neurologist to a regular Neurologist who specialized in epilepsy when she was 17, and that was the start of a very bad few years for Megan. The doctor wanted her off of Depakote because it can cause side effects in women and is known to cause a slightly higher birth defect rate than some of the newer drugs. I won't go into the details of all the problems Megan had, but suffice it to say that she had much worse seizure control than she had ever had before, even being at the top of the therapeutic window for Lamictal and at the maximum dose for Keppra. We saw a different neurologist in the same medical center, and he said that if Megan didn't have many/any problematic side effects from Depakote, it was still the drug of choice for JME. Long story short, she is doing really well now, and even is driving again, as she has her temps and is practicing a bit before she goes to take her behind the wheel test.

I know this is really long. I hope you managed to wade your way through the whole message.

Best wishes to you!
Tammy
Megan's Mom

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