September 13, 2012
March 21, 2012
March 12, 2012
March 7, 2012
February 20, 2012
February 13, 2012
February 6, 2012
January 26, 2012
Definition: Failure of adequate trials of 2 tolerated and appropriately
chosen and used antiepileptic drugs (whether as monotherapies or in
combination) to achieve sustained seizure freedom.
On December 11, 2009 at the American Epilepsy Society 63rd Annual Scientific Conference an International League Against Epilepsy task force developed a global definition for drug-resistant epilepsy to improving the way difficult-to-treat patients are cared for. It is estimated that one-third of patients continue to have seizures despite treatment.
I am one of them.
In 2000, after I had my first seizure I was prescribed Diastat which is a rectal gel that is issued in an emergency situation to stop cluster seizures. I have never had to use it because I was sent to the hospital during my second seizure and was shot with Diazepam to stop seizing. It worked well that day… knocked me right out.
I was diagnosed with epilepsy after having 4 seizures within 2 weeks. Then, I started my first everyday medication Dilantin. It worked fine for about 5 years, but after time its major side effect for me was it depleted my Calcium and Vitamin D. I was never told to take vitamins and at 22 years old I was already showing signs of osteoporosis.
I was re-evaluated by a neurologist who took me off of Dilantin in October 2006. I then suffered one of the worst seizures I had ever had January 2007. I was immediately put back on Dilantin and started Topamax as well. On Topamax, the whole left side of my body went numb and everything I ate tasted like metal. Not to mention, I started having partial seizures which the medications were not controlling.
My neurologist was not equipped to handle my situation, so she took me off of Topamax and referred me to an epileptologist. He prescribed Tegretol XR which I tolerated pretty well, except it was doing nothing to stop my partial seizures. So he tried Zonegran. It was the worst medication I have ever tried. I am a very calm and easy going person, and on that drug I punched walls, screamed, and went into manic episodes. My wife and I had to call the emergency line at the hospital to get me taken off of it within 3 weeks.
By 2009, I started to consider brain surgery, however I still needed to find a medication that I could tolerate. Keppra was given to me by my second epileptologist. Again, I continued to have seizures and I was so depressed. Apparently, Keppra makes that worse. I didn’t feel real, and as the dosage increased it got worse. I was on a combination of Tegretol, Keppra, and Lamictal with no stoppage of seizures, when my epileptologist decided to try Vimpat.
I spent 2007 to 2009 having seizures constantly. A combination of Vimpat and Lamictal helped get me through my surgery in March 2010. It had been the only drug combination that had ever decreased my partial seizures. After the surgery, I was seizure free for a year and a half. Last month I was given the max dose of both drugs to try and stop some break through seizures. It didn’t work. I felt so nauseated, dizzy and high that I could not function during the day. Apparently, I have grown an intolerance to the medications. I told my doctor that I can’t live like this anymore. I have had brain surgery. I have been on so many medications, and it is getting old.
He decided to decrease the medications to relieve my side-effects, and I felt great!!!
Well…Now the seizures are back…
Monday, January 23, 2012, I became a candidate for another drug trial. At this time, my doctor believes FDA approved medications cannot help me. YKP3089 C013 in phase II testing I’ve been told is helping people like me…people with intractable epilepsy. I am going to possibly start the drug next month. We shall see…
January 16, 2012
Yesterday I had 2 more seizures since my Left Temporal Lobe Resection Surgery on March 17, 2010. That brings my total amount of seizures to 7, and I am wondering how common it is to have a re-occurrence of seizures after surgery?
I have met many people on Facebook who are seizure free after surgery, and others who have had their seizures reduced, and then others who said the surgery did nothing to stop their seizures. I would like to get as much information about this as possible to help others make an informed decision when choosing surgery.
At this point, I am still grateful for my reduction in seizures. I knew in my situation I was never going to stop taking medication, and I had only a 40% chance of stopping my seizures all together. What do you think? Have you had seizures after surgery? Was the surgery worth it? Please comment below.
January 4, 2012
After my first seizure doctors did not give me medication. They could not determine what had caused it, and I was told that one seizure could be a onetime occurrence. Unfortunately, my seizures continued.
My second seizure happened when I was eating pizza with Emily, my future wife. After having a few bites, I felt this overwhelming feeling. I screamed for Emily to shut up, but it wasn’t her talking…it was all in my head. Then, I felt as if I couldn’t breathe. I fell to the floor and lost consciousness. Emily told me my head fell in between a wall and a metal air-conditioning intake vent. She knew not to restrain me, but my head was hitting the vent hard so she put her arm under my head so that it wouldn’t get hurt. She was also told how to administer Diastat, but there was no way for her to turn me over. She couldn’t move her arm out from under my head, so she just screamed for my sister to call for an ambulance.
The ambulance crew came to haul me away again, but this time I don’t remember the trip to the hospital. I had two more seizures at the hospital. The third one happened after my dad came to see me. My dad and I are not very close, and this seizure scared him pretty bad. He screamed for a doctor to help me as he tried to keep me from falling off the gurney. After that seizure, I was told the doctors gave me Valium to knock me out.
I was in and out of consciousness for a while but I remember being taken in for an MRI. That is when I realized I was in a children’s hospital. The hallways were so colorful and there were children everywhere. I felt like I woke up in Wonderland. I was so out of it… lol. I remember falling asleep during most of my testing, even my first EEG. I was in the hospital for a few days, and most of them were a blur.
It wasn’t until I left the hospital that it sunk in what had happened. I was told that I have epilepsy, and the only thing I could do to stop my seizures was to take medication EVERY DAY. At the time that was Dilantin. I was just beginning to know what it felt like to have epilepsy. For instance, for 2 weeks after I was released from the hospital my mom kept a baby monitor in my room, just in case I was to have another seizure at night. I had to wear a necklace that told everyone that I was an epileptic. I was told that I couldn’t get a license for a year, and at 17 that was all I wanted. I was even told not to play my favorite computer games, because it could trigger another seizure. Back then, I was not interested in knowing more about epilepsy. I just knew it sucked.
Fortunately, Dilantin worked for about six years and during that time I was able to live a pretty normal life. I moved out with Emily and we started our lives together. I was able to get computer certified and I supported myself and Emily as she went to college. After a while, Dilantin had taken its toll on my body, especially my bones throughout the years. No one ever told me to take vitamins and I was already starting to have osteoporosis in 2007. That is when I was re-evaluated by a new neurologist and epilepsy became so much more intrusive and stopping my seizures was not the only thing I had to worry about.