Anti-seizure medications…manage your expectations and do your research!

Weight gain, weight loss, mood swings (or as I call it, just general crankiness!), drowsiness, skin bruising, rashes, mouth ulcers, swollen glands, nausea, clumsiness, even suicidal thoughts…they are all possible side effects from these sometimes brutal anti-seizure medications we must take. And, this is only a partial list.

For those of us who take these medications for our Epilepsy, it’s almost a rite of passage; try a new drug and just sit and wait for the side effects to grab hold of you and swallow you up. You have to wonder why there is such a severity to all of this. I know I do!

I recently started taking a new anti-seizure drug, Vimpat. Like many of you…anti-seizure meds run their course with me. In other words, I reach a point and they simply don’t work anymore, so it’s time for me to switch. We can share information in chat rooms and blogs like this one about side effects that we have experienced, but truly…you don’t know what will happen until you begin to take the drug. The side effects of these meds are as unique to individuals as our seizures themselves.

So, how do you decide on which anti-seizure drug to try when it’s time to switch? Obviously, your neurologist or epileptologist will have ideas for you. I think you also must do your own research. Each of the anti-seizure drugs have very accessible websites, but manage your expectations when you visit these sites. ‘Epilepsy Independence’ is how UCB promotes Vimpat. I have to chuckle to myself when I visit their site…the real Vimpat-takers are standing in their neatly pressed khaki pants and pastel tops–and, they are smiling! You also must be realistic about your expectations. I was taught early on by some very wise neurologists…freedom from seizures can’t be a guarantee. Yes, it’s something to hope for, but it’s never a for-sure.

And, you should never be discouraged when a treatment for epilepsy can also be used for other medical situations. When I had my Vagus Nerve Stimulator implanted one year ago, I did my research (great site, by the way).

Photo: http://www.cyberonics.com

Photo: http://www.cyberonics.com

At first I was confused…but glad to see that the VNS could also be used to treat depression. Companies like Cyberonics spend years researching this data. I met someone a year or so ago who was taking Topamax for migraines. I was still taking 200 mg of Topamax per day for my Epilepsy. Now, Ortho-McNeil has two different websites for the drug–one for Epilepsy and one for migraines. It’s all about deciding which is the best drug treatment for your Epilepsy, and no website or chat room can decide this for you.

And, you must be cautious and make sure the drugs you are taking are FDA approved for the treatment of Epilepsy. Just last week, a jury decided Pfizer violated the law by promoting Neurontin for the treatment of ailments other than seizures. Now, this move will cost them $141 million. Pfizer is appealing.

More than likely there is a drug-treatment out there for your Epilepsy, but it’s a matter of managing your expectations and choosing the right one.

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