My Story

I have quite a long story to tell, but fortunately, it has a happy ending! I was diagnosed with gran mal (now called tonic-clonic) seizures at the age of 6 months after hitting a coffee table with my left temple. I continued to have seizures, though not as often until age of 6, when I had a gran mal seizure in the first hour on the first day of school for first grade. My teacher retired that year - Lol! My medication (phenobarbital - this was back in the 70s) was significantly increased at that time. But it was the last seizure I had until I was taken off all medication at the age of 13 (had to wait until I had my menstrual cycle for a year before they would start to reduce the medication dosage). The doctor said I had "outgrown" the seizures and would be fine. I had no further seizure activity until my mid-twenties. Then after 2 years of being on the depovera birth control shot, (which has only recently been shown to have a link to neurological problems and hadn't considered that it could have caused the seizures until I looked back on the timeline several years later). But the birth control had stopped by menstrual cycle for about an year and that is when the seizures started up again. But they weren't gran mal this time, but rather an automatism focal (impaired awareness) seizure. I would usually get a feeling of deja vu or an aura prior to the event, but not always. My triggers were lack of sleep, stress and/or low blood sugar/sodium. Once again, I was diagnosed as epileptic and started on seizure medication (trileptal this time). And now, I couldn't be on the birth control, as the seizure medication nullified it's affects. Once my cycles started up again, the seizures became less frequent for a short time, which was good since I became pregnant just four months after stopping the birth control. My pregnancy went well. I carried to the day she was due, had a rather easy labor and she was perfectly healthy. Our second daughter was born just fourteen months later - again full term, very short labor and she too was perfectly healthy. I opted at that time to have my tubes tied. It was after all of this that another issue could no longer be ignored. As most insurance do, they want you to use the generic form of any drug, since those are cheaper. The generic form of Trileptal is Oxcarbazepine. I had been on that medication for about three years, when my husband noticed that my hearing seemed to getting worse and encouraged me to get it checked. The ENT I saw confirmed that I had a "Cookie Bite" loss (meaning I cannot hear well on the extreme ends of the spectrum and it goes up and down on the middle sounds). I never had any trouble prior to this; work a desk job away from any loud noises and there is no history of hearing loss in my family. I went through all the usual tests (MRI, CAT scan and bloodwork galore) but no cause to the hearing loss was ever found. It wasn't until the hearing on my left side started dropping significantly (like 25-30% every 3 months) and the seizure activity started increasing that a change was made to use the actual Trileptal not the generic brand. Within weeks of being off the generic form, the hearing loss stabilized, but the damage was already done - I was left with only 20% hearing on my left side and was down to 60% on the right side. I mentioned this many times to both my Neurologist and ENT, but both said unless I would do a controlled study nothing could be proven that the generic medication caused hearing loss - but I think it is too coincidental that the hearing decline dramatically tapered off just after switching to the real stuff! Unfortunately, the real Trileptal was not able to completely stop the seizures either. It did control them for a couple of years, but then started increasing in frequency again. My neurologist didn't want to switch to something else or add another medication, so they instead referred me to an epileptologist. The epileptologist suggested adding the "helper" drug Keppra to my medication list. The seizure activity was reduced after adding the Keppra, but within another few years, they started increasing again. Plus now I was having constant headaches. Not the head-splitting kind of headache, but the dull throb that won't go away. When the seizures started increasing again, a sleep study was ordered, but nothing conclusive could be found, so we tried a 24 hour hospitalization/surveillance for 4 days, but again it came back inclusive. It was during this study that I found that when I didn't take the Keppra, the headache went away. Unfortunately, my doctor didn't think that was reason enough to stop the Keppra. But again, rather than changing medications, yet another medication was added - Zonegran. It was a relatively small dosage (only 100mg twice a day), but now I was on 1500mg of Trileptal (taken 3 times a day); 1000mg of Keppra (taken twice a day) and now 200mg of Zonegran. Occasionally, I would get dizzy right after taking the Zonegran, but it would usually pass after a few minutes. The combination of the 3 medications worked for a while, but then the seizures started becoming more frequent again and there didn't seem to be any pattern or specific trigger. So, then a psychological exam was ordered. This test found that I scored way too high in too many areas to be pinpoint the area any further than somewhere in the temporal lobe - as a matter of fact, they said I shouldn't have been able to get the test scores I got since I was epileptic. Apparently, I was a high-functioning epileptic and further amazed them that I am an accountant by trade too. Since, nothing could be found through any of these tests, my doctor suggested switching to a different doctor (I was with St. Mary's in Grand Rapids, MI) that might be able to do an internal probe to determine the cause of the seizures. I was given my options and settled on Spectrum Health (Grand Rapids, MI). After getting through the paperwork shuffle from one hospital to the other, completed updated EEG, MRI and CAT scans and numerous office visits to discuss the options, a year and half later, the team at Spectrum agreed that the internal probes may be the best option. If successful and depending on the area affected, a resection of that spot could possibly be done to relieve the seizure activity. I agreed to the procedure and was scheduled for it 3 months later. The surgery to set the probes directly into the temporal lobes went smoothly. After a day, they started reducing my medications to induce the seizures. It took being completely off all the medications for 24 hours to make the seizures start. Then I had 14 episodes in a 6 hour time frame, which made them extremely nervous, so they added the medications back on saying that they had all the information they needed. What they found was a small section of my right side hippocampus seemed to be what was causing all the seizure activity. And because of this, a resection was an option with possible side effects of short term memory loss and/or peripheral vision issues. Since the side effects were so minimal, I agreed to the resection which was scheduled for a week later (would have been sooner, but the doctors wanted a specific operating room that had a built in MRI machine and it wasn't available any sooner). The resection surgery went very well and I was released from the hospital two days later. Six weeks later, I had a cochlear implant done on my left side. From that surgery, I was very ill from the after-effects of the anesthesia. So much so, that I couldn't keep anything down, including my seizure medications. It was the first time since the resection that I had not taken any of the medications. Fortunately, I never had any seizures. After three days, I was finally able to keep some food down and started back on the Trileptal, figuring that had been in my system the longest so should be the easiest tolerated. It stayed down, so the next day, I added the Keppra. That stayed down too, so the next day, I took a Zonegran. Immediately after taking it, I was so dizzy, I couldn't stand up. It took several minutes, for me to be clear-headed enough to get to the bathroom where my stomach then rejected all of it's contents. I never took another Zonegran again. I contacted my doctor, letting him know what had happened and that I was stopping the Zonegran. Unfortunately, he never saw that message and it wasn't until my three month follow-up appointment, that I told him what had happened. He wanted me to start back on the Zonegran, since he didn't want to change any of my meds until I had cleared one year with no seizures, but I was adamant that since I hadn't had any seizures and that medication made me physically ill, I was not going to take it and would take the chance of a seizure happening. Fortunately, my gamble paid off! To make a very long story short, I am now officially seizure-free and have been for nearly two years (September will be two years). Plus, I am off from ALL medications and have been since February of this year. With lots of prayers, support both medically and emotionally, as well as the Good Lord's help and guidance of the doctors' hands, I have now beaten epilepsy not once but twice and so far, no side effects from the resection. I have been told after all of my follow up exams and psychological testing, that I am doing so well, I am "boring". I'm very good with that! If anyone has any questions about my experiences with the medications or the surgeries, please feel free to contact me.