Alan
Do your research and challenge your neurologist to say could we do more? Could we do better?
Alan first began having seizures as a child, but it was not until he was a teenager that the official diagnosis of epilepsy was made. "They put me on medication and told my parents, 'You should never let this child participate in anything strenuous ever again,'" Alan says, noting that his parents had different ideas. They told him they would be there to support him in whatever he chose to do. "If I had to be one of those kids who sits up in the stands and watches all my friends play sports, I could not have handled it well. But my parents and my coaches had the courage to allow me to participate, and that support helped me through the first difficult years."
After high school Alan went on to college. "That's when things got very difficult. The medications I was taking really took away my ability to concentrate." He decided to stop taking medications during that time, and he endured 4 tough years filled with seizures. But he persevered and got an undergraduate degree as well as a master's degree in mathematics before going into the information technology (IT) business.
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If your neurologist doesn't seem to be as interested in solving your epilepsy problems as you are, then you need to do a couple of things. You need to do your research on all these new drugs that are coming out and challenge your neurologist to say now why aren't we trying these? And then if that neurologist is not interested in going that direction, then I suggest that you find another one. Now, they're not always easy to find. A neurologist, say for example in my area, they're not just there. We have to drive a long way to find one but it's very well worth it because if I hadn't done that I wouldn't be where I am today.
If your neurologist doesn't seem to be as interested in solving your epilepsy problems as you are, then you need to do a couple of things. You need to do your research on all these new drugs that are coming out and challenge your neurologist to say now why aren't we trying these? And then if that neurologist is not interested in going that direction, then I suggest that you find another one. Now, they're not always easy to find. A neurologist, say for example in my area, they're not just there. We have to drive a long way to find one but it's very well worth it because if I hadn't done that I wouldn't be where I am today.
"I've worked in IT for over 30 years now and the seizures have been there all along. I mean, it's not unusual at all for me to have a seizure at work," Alan says. He makes sure that he tells the people he works for, as well as those who work for him, about his epilepsy. "They all know exactly what to expect, and to just move the stuff out of my way. It will end, and then I'll pick up, dust off, and we'll continue on. It's worked out, but it's not without challenges for everyone."
When Alan looks back on the 55 years he's been having complex partial-onset seizures, he makes note of all the many different medications he has tried that just didn't work. "When I got out of college, and during the next 15 to 20 years, there weren't a lot of new medications coming out on the market," he says. Even though he tried what became available, he was always faced with the same disappointing results. "Between the ages of 20 and 40 I just decided that nothing was going to help me. It was very hard during those years to continue to be a fighter. You want to tell yourself you're going to beat this thing, but it's hard when you don't see anything out there to help you."
Alan says he has seen 8 neurologists in 3 states over the years. "Some were willing to spend about 5 minutes with me," he says, noting that some even forgot what medications he was taking or weren't sure about the types of seizures he was having. "Any time you get somebody like that, I would certainly advise you to move on to another doctor, one who takes your case personally, someone who wants to try new medicines, someone who is just as interested in solving your problem as you are."
Although Alan has taken many different medications that didn't give him the control he wanted, he has continued to listen when his neurologist told him about something new that might help. "I've just had to pull myself together and say, OK, let's give it a try."
That willingness to try again was what finally led Alan to try Vimpat. "Prior to Vimpat, the most time between partial-onset seizures was 38 days. Now, after starting to take Vimpat, I'm going as much as 3 months between seizures. That's a giant step for me."
Alan points out that in addition to medications and seeing the right neurologist, support groups are essential. "They make it possible to talk to people who actually have the disease and have learned how to live with it," he says. But he notes that support groups may be difficult to find in certain areas. "I had thought for a number of years that I should actually start a support group," he says. "And about a year or so ago, that's just what I did. I've always said someday I've got to find a way to help others out there who are fighting this same battle, to keep them from going through 50 years of what I've gone through."
Indication
Vimpat® (lacosamide) is a prescription medicine that is used with other medicines to treat partial-onset seizures in people 17 years of age and older with epilepsy.
Important Safety Information
Vimpat is generally well-tolerated, but may not be for everyone. Ask your healthcare provider if Vimpat is right for you.
Warnings and Precautions
Antiepileptic drugs, including Vimpat, may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your healthcare provider right away if you have new or worsening symptoms of depression, any unusual changes in mood or behavior, or suicidal thoughts, behavior, or thoughts about self harm that you have never had before or may be worse than before. Do not stop taking Vimpat without first talking to your healthcare provider. Stopping Vimpat suddenly can cause serious problems.
Vimpat may also cause you to feel dizzy, have double vision, feel sleepy, or have problems with coordination and walking. You should not drive, operate machinery or do other dangerous activities until you know how Vimpat affects you.
Vimpat may cause you to have an irregular heartbeat or may cause you to feel faint. Call your healthcare provider if you have a fast, slow, or pounding heartbeat, shortness of breath, feel lightheaded, or if you fainted or feel like you are going to faint.
Vimpat is classified as a federally controlled substance (C-V) due to a low potential for abuse. Keep your Vimpat in a safe place and do not give it to anyone else.
In rare cases, Vimpat may cause a serious allergic reaction that may affect your skin or other parts of your body such as your liver or blood cells. Call your healthcare provider right away if you have a skin rash or hives, fever or swollen glands that do not go away, shortness of breath, swelling of the legs, yellowing of the skin or whites of the eyes, or dark urine.
Vimpat oral solution contains aspartame, a source of phenylalanine.
Common Adverse Reactions
The most common side effects with Vimpat are dizziness, headache, nausea, and double vision. To report Suspected Adverse Reactions, contact UCB, Inc. at 866-822-0068 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.
Please see additional patient information in the Patient Medication Guide. This information does not take the place of talking with your healthcare provider about your condition or your treatment.
