Jeremy, 33, USA
2008:
I was a graphic designer during the day and a photographer for a local newspaper during my free time. On a Friday in August of 2008, I went to sleep and I woke up in the hospital two weeks later. I had viral encephalitis, but how I contracted it, we still don't know. I had my first seizure that Friday night right after I went to sleep. My wife found me on the floor on the side of the bed. The fall from the bed had broken and dislocated my left shoulder. I was in two hospitals that first week, having seizure after seizure. All of this was happening while I was unconscious. Once I became aware of what was going on, I found myself with IVs all up and down both forearms and my family surrounding me. It took me several days to completely recognize them. I was still having smaller seizures every 15 minutes, as the seizure medication started working and the swelling in my brain started to subside.
When I was finally released from the hospital, after almost two weeks, I hardly recognized my home. I was hallucinating from the amount and types of medication and I found that I forgot how to operate my camera and the computer. I had to re-teach myself how to use them so I could go back to work.
For the rest of 2008, I was in and out of the hospital with strong seizures, as the medications were not working. My wife and I decided to research doctors and switched hospitals, in an effort to get a handle on the seizures, and maybe gain a new perspective on my Epilepsy.
Please note that my left shoulder was still broken and we were seeing a different set of orthopedic surgeons for that. The surgeons were worried that if my seizures weren't under control, it was possible for me to have a seizure on the operating table. We had to focus on controlling the seizures first.
2009:
At the new hospital, we found a doctor that had different ideas concerning medications. We tried a new mix of medications because the seizures were still not controlled properly. I was also having some very negative psychological side effects on the old mix. I was aggressive and my anxiety levels were out of control. I ended up breaking my hand during one of the more frustrating episodes. Eventually, my doctor proposed the VNS implant or brain surgery. I was able to see a specialist who had done the surgeries before and learned I was not a candidate for the brain surgery because even during a detailed MRI the doctors cannot locate the source of the seizure activity. We agreed to have the VNS surgery after my seizures were controlled enough for me to have shoulder surgery. Luckily, there was a gap where my seizures were under control enough for my shoulder to be repaired. I had surgery on my left shoulder in September of 2009, a year after it was broken, the doctors had to take a piece of bone from my hip to repair the shoulder. The rest of the year was fair when it came to seizures as I recovered from the surgery.
2010-2011:
After the shoulder surgery, I began to have some more negative side effects to medication. One medication in particular gave me kidney stones, so a new mix of medication had to be figured out. We continued to try different medication “cocktails”, but the psychological side effects came back into play. On top of the medications for seizure control I needed something to help my depression and anxiety. Medication to control side effects of other medication. In November of 2010, I had the VNS surgery and had several doctors appointments thereafter to adjust the "dosage" or pulse-rate of the VNS implant and since then I feel like I have a little control over my seizures, no matter how small that control may be. I will say that it helps with recovery time, but I'm not sure about lessening the number of seizures I'm having.
2012:
This year is a little hard for me to talk about. While my seizures were fairly under control (I was only having about one a month at this point) the psychological side effects of the medications started to peak. In the fall of 2012, I cut my wrist with a pocket knife. The paramedics were called to my house and I wrestled with them for about an hour, trying to refuse treatment. I was eventually given a couple shots of Ketamine to knock me out so they could take me to the local hospital to treat my wrist and watch over me for 24 hours. The hospital was unfamiliar with my history and nervous to release me into my family’s care. They discussed sending me to a psychiatric hospital and after my wife agreed to take me to the emergency room of the hospital where my neurologist is located so he could weigh in on treatment, they released me. We sat in the psychiatric ward of the emergency room for 7 hours before they decided to release me without any treatment.
After the "incident," as I call it, I saw my regular neurologist and was again given a new mix of medication. To combat the side effects and hopefully prevent any further harm I started seeing a psychologist and psychiatrist regularly. This way my medications to combat some of the psychological side effects could be more closely monitored.
My family and I then decided to seek treatment at a renowned medical facility two states away (350 miles or 563 kilometers). I saw two other Epilepsy specialists at this hospital while still keeping my local Epilepsy doctor. The thought was that they might have some further input as to why I was having seizures and may have alternative treatments available.
They administered their own tests and offered a couple drug treatments that I hadn’t heard of. One was a steroid treatment. A nurse would come to my house once a week for 12 weeks to administer a steroid drug intravenously. Then after the steroid treatment was finished, I would go to the hospital and have more testing. If that didn’t seem to help there was another treatment, 12 weeks of outpatient IVIG treatment at my local hospital with results sent back to the other specialists.
I stopped working in 2012, and was put on disability.
2013:
This was the year of the steroid and IVIG treatments. Twelve weeks of the steroid treatments in the spring. After that process there was no improvement. The next was to have outpatient IVIG treatments for 12 weeks at my local hospital with the reports being sent to the specialist. I couldn’t make it through the 12 weeks, as the treatment made me develop aseptic meningitis. I was hospitalized for a few days and re-started the treatment only to develop shingles. I decided to discontinue the treatment and my seizures were up to three a week.
2014:
There were no other treatments to pursue at the medical center that was so far away so we went back to my neurologist to see if there were other medication options. I tried two other "experimental" medications. The first medication was started in the summer of 2014, and actually increased the number and intensity of my seizures. I was swiftly taken off this medication. The second medication started in the fall of 2014, and increased to a level that my body couldn't withstand. I started having more of the psychological side effects and told my wife I needed to go to a hospital. I went to a local emergency room and they suggested with my complicated condition I see my local neurologist. We went to the city to be at the emergency room where are doctor practices from. I was kept in the emergency room psychiatric ward for 24 hours until they could find a bed and then admitted to the hospital. My doctor immediately started to lower the dosage of this medication for which I'm still taking today. Although I'm still having the psychological side effects, they're not nearly as bad as they were last fall. The medication for the psychological side effects were increased to a level that somewhat helps me withstand the new seizure medication's side effects.
Today... 2015:
I'm currently taking four medications for Epilepsy, and two medications to combat any psychological side effects that I may be experiencing. All of them together seem to be working ok. I'm now having about three seizures a month, and the psychological side effects seem to be under control, although I still have very tough days. When I feel any of these psychological side effects, I'm usually unable to get out of bed and I'm extremely depressed or aggressive. My psychologist and psychiatrist have offered tools to combat these feelings and they seem to work 70-80% of the time.
I'm still unable to work because of the seizures and negative psychological effects of the mediations, but I do try to get out of the house to get exercise.
Like all of us, Epilepsy is an invisible disorder until someone actually sees a seizure happening. But, as I said before, they're only happening about three times a month. I hope my story helps any of you out there that may feel lost or otherwise uneducated about the effects of seizures and the mediations prescribed to combat and control these seizures.
Thank you.
- February 17th, 2015
Contact info:
Twitter: @smithjryan
