I've written a few blogs now relating to epilepsy. I have a fresh view of it after yesterday's visit with my mother's neurologist. My mom has been feeling awful lately- and wondering if the root of it is her anti- epileptic drug. Her hope this week was to be told that she didn't need them anymore... no such luck. We were told that because epilepsy is a progressive disease, you are pretty much destined to be on Anit-Epileptic drugs for the rest of your life once you have had a seizure (because seizures cause brain damage that lead to more seizures, that lead to more brain damage and more seizures...) The doctor said that if any patient with mild epilepsy lived a thousand years they would reach intractable epilepsy (epilepsy that can not be treated with drugs). So... it is important to treat it while you still can.
The downside? Those drugs have some NASTY side effects. My mom has been on one medication and feeling completely terrible... so we googled the drug. The side effects include, but are not limited to... drowsiness, accidental injury, weakness, vomiting, infections, loss of appetite, runny nose, coughing, nervousness, neck pain, back pain, depression, mood swings, irritability, muscle weakness... and that's only half... Yesterday she decided to try switching meds - when we saw these side effects we were pumped! Maybe not taking this drug she would feel better... until we saw the side effects of the new drug ... headaches, shakiness, weakness, back pain, heartburn, nausea, vomiting, insomnia, bronchitis, chest pain, fever, a rash that could send you to the burn unit of a hospital... again - not even half. I have to admit, I almost didn't want to read the list to her.
And these are what people suffer from who can be TREATED for the disease. Those that have to live with the effects of epilepsy have it even worse. I was BLOWN away that a disease that has been around for so long still destroys so many lives. On the plus side - spending the afternoon in the Neurosciences Center of the U of U made us realize how lucky we have it. Yes, my mother's health is poor... but there are a lot of people there in much worse shape. Donate to the Epilepsy Foundation if you can- help support research for new drugs. They are much needed.