Mike’s Story

“I have Epilepsy…
I can deny it, but it won’t be denied…
I can shake my head and try and make it go away, but it won’t go away…
I can pretend it’s not there, but it is…

It is there each and every day of my life. There is no such thing as a day without difficulties in some measure. The difficulties are worse on some days and lighter on others, but they are always there.

I enjoyed pretty much perfect health for the first 48 years of my life, and for that I am thankful. I guess I took it for granted and assumed it would go on that way forever. I was gravely mistaken.

January 2008. It was a Sunday, late morning. My two girls were in their room and I was cooking lunch. I had been in the grip of an extremely odd feeling in my brain since the moment I woke up, a feeling that cannot really be described in words. I tried to ignore it and concentrate on what I was doing.

Suddenly the world changed! Everything looked different, felt different. All at once I began to see scenes, as if from a dream, and my entire being was filled with unimaginable horror and dread. I got sick to my stomach and tried to get to the bathroom as quickly as I could- those dreadful, horror-filled scenes filling my head the whole while- but my legs wouldn’t carry me anymore and I went to my knees. The last thing I knew was that my consciousness was being drawn down through a funnel into some kind of black hole.

I came to some time later on the kitchen floor in front of the stove, the food still simmering away above me. I had no idea whatsoever what had happened to me. Had I fallen asleep on the kitchen floor? Strange things were happening to me, things I had never experienced before. I stood up and went on cooking. When the food was ready I called my kids and we all sat down at the table. I began to tell them how strange I was feeling and what had just happened a short while ago, but suddenly I couldn’t talk anymore. I looked at them, tried to speak, but nothing would come out. Those scenes returned and I was once again filled with unspeakable horror and dread. My consciousness began to slide down through that funnel again, all in a matter of a second or two.

I came to in the emergency room at the hospital. Once again I had no idea what had happened to me. A nurse in the room told me that I’d had an Epileptic seizure. I said that’s impossible because I don’t have Epilepsy. I don’t remember her answer but a doctor came in at that moment and I seem to remember that the first thing he said was that my driving privileges were suspended as of that day- and he said it very, very gruffly and rudely. I became aggressive and told him there was no way, that I had to drive to work. He said I could forget it, that I’d had an epileptic seizure and the law said I couldn’t drive for at least 3 months. I might be able to drive after that if I had no further seizures. Then he left the room.

They kept me in the hospital for a few days and did EEGs and other kinds of tests the EEGs were all clean and none of the tests showed anything abnormal. They let me out 3-4 days later and told me to go to a neurologist, who would take care of me from there. It took me a couple of weeks to recover from that seizure. I was totally beside myself and my brain felt really, really odd. I couldn’t think right. My brain could hardly process the things I saw and heard. Most of all I was scared. Really scared…

I did go to a neurologist right away and she confirmed that I wasn’t allowed to drive for at least the next three months. I spent those three months getting weekly EEGs, all of which were clean, and being scared that it would happen again. After three months of clean EEGs the neurologist declared that the seizures had been a one time occurrence and gave me the all clear to drive again, as well as telling me I didn’t need to see her anymore. She told me that it had likely been caused by too much stress and that I should take a good look at my life and see if I couldn’t get rid of some of the stress. I did have one episode during those three months, but I never told anyone about it. I was taking the train to work, since I wasn’t allowed to drive, and the ticket collector came into the car and began checking people’s tickets. As he came closer and closer to me those scenes suddenly came again, along with the nausea and horror and I began being pulled down into the funnel again, but I fought it with all my might and managed to maintain consciousness. I was totally shaky and couldn’t speak as I showed the man my ticket. The episode passed within 15 minutes or so. I now know that that was a complex partial seizure, or CPS.

I did change my life, drastically, after that. I owned two business and they weren’t doing well, which caused me to have all kinds of stress. I gave up my businesses and found a regular job. I did my best to find as much inner balance as I could. Things went well and I had no further seizures. Gradually the fear that it could happen again subsided in the course of the next year. I found the courage to swim again and my fear of driving went away. At some point I pretty much forgot the whole thing. Interestingly enough I was working at a home for behaviorally challenged teenage boys and one of them had Epilepsy.

Then came December of 2010. I woke up one day with that horrible feeling in my brain again, but it had been almost two years and I didn’t really remember what it meant. That went on all day and on into early evening. Then those scenes suddenly came again, complete with all the accessories, and I was driven to the floor and fought against losing consciousness with all my might. This happened about 6-7 times in the course of the evening. Each time I went down. Each time I fought it with all my might and managed to retain consciousness. I praised myself for having been able to fight and retain consciousness but now know that those were once again CPS and you don’t always lose consciousness during a complex partial seizure. Once again it took me a couple of weeks to really recover from those episodes. I went back to the neurologist and told her what had happened. She did an EEG, which came up clean, and she declared that I was healthy and there was need any further action. I asked about driving, being very fearful of it happening again while driving, but she said there was no need to suspend my license since I hadn’t lost consciousness. It took a long time after that before I felt safe behind the wheel though.

Everything went fine after that and I gradually lost my fear again. That is until October of 2012. Once again I woke up with that horrible feeling in my brain, only this time I knew exactly what it meant! I was devastated. How could that be? I refused to believe it. I didn’t want it to be true. I reminded myself that I’d been able to suppress it in 2010 (I still thought I had) and told myself I’d be able to do it this time too. Everything was going to be fine. It would pass. Yet the horror scenes began right away that morning, over and over again as I was getting ready for work, and I “suppressed” them every time. I was teaching English at a private school at the time and had a Business English class that morning. My girlfriend, with whom I share an apartment, asked me what was wrong and I told her what was going on. She said I should go to the doctor but I told her it would be ok, that I was able to suppress the seizures. She was brushing her teeth as I got into the bathtub, when suddenly it came so hard and so fast that I couldn’t stop it. I had a complex partial seizure- which affects only one half of the brain- and lost consciousness this time- and that in the bathtub. I came to with her holding my head above water. She told me to get dressed and she’d take me to the hospital but I refused, said I had to go to work.

I did go to work. One elevator was out of order and there was a long line for the other one so I walked up nine flights of stairs, an outside staircase, having to sit down and fight the horror scenes and loss of consciousness every few steps. I now know that those scenes, called auras, are in and of themselves small seizures and serve as warnings to many epileptics that a bigger seizure is coming.  I told my class that I wasn’t quite up to par that day and that if I suddenly stopped talking they were to just wait for a moment. It went on that way all morning, the horror scenes, the supposed suppression of loss of consciousness, the horrible feeling in my brain, scattered thoughts, and I don’t know what all. It got worse and worse and worse. By around 11:30 am the horror was coming so hard and so fast that I simply could not go on. I told the class I was letting them go early.

I came to in the hospital emergency room…
The nurse told me I’d had a grand mal seizure…
The doctor walked in and told me my driving privileges were suspended (for a year this time)…
I was devastated.
This couldn’t be happening!!!

They kept me at the hospital for 13 days and ran even more tests than in 2008, including a spinal tap (which I wouldn’t recommend to anyone)- it was a bigger hospital than the last time so they had more equipment. Once again everything came up normal. I didn’t learn until much later that a great many Epileptics have normal results on all the tests because the focus of their Epilepsy is too deep in the brain to be easily detected. That’s why EEGs etc. are only tools and a diagnosis can be based solely on eyewitness accounts of exactly what happened, that and ruling out all other possible causes.  In my case the sequence of events in all three episodes proved beyond a shadow of a doubt that I had Epilepsy. They gave me a choice: I could start taking medication, in which case I had a chance of being able to drive again (after a year seizure free) and being able to work- but I’d never, ever be able to stop taking the medication again for the rest of my life. Or I could decide not to take medication, in which case I’d never be able to drive again and would most likely not be able to work again either, and I’d have to live with having seizures, including the occasional grand mal seizure, for the rest of my life. Apparently the third episode a person has tends to open some kind of door and the Epilepsy affects you every day of your life from that time on. I’ve read that, heard that from other epileptics, and that’s been my own experience as well. It’s also a progressive illness and the intervals between grand mals shortens with each episode, as do the daily effects of the illness that you have to live with.

So I decided to start taking medication. Epilepsy medications are so rough that they have to be introduced slowly over a period of weeks. It started with 25 mg per day for two weeks, then 50 mg for two weeks, then 75 mg for two weeks etc. on and on till you’re up to 200 mg per day. After that a neurologist takes over and adjusts the dosage to your individual case. While the medication was being stepped up I had many very heavy complex partial seizures that drove me to the floor, where I lay moaning and crying and begging it to stop. They lasted 10-15 minutes each.

I now take 450 mg per day. The medication keeps me from having grand mal seizures. I still have complex partial seizures however, but the medication keep them from being bad enough to cause unconsciousness. The medication is supposed to keep the partials as mild as possible. I have a lot of like electric shocks, like a short explosion in the brain. On good days they last about a second and are light, and happen maybe 10-15 times per day. It gets worse when the flu is going around or something because your immune system is busy fighting the flu, leaving the Epilepsy to do as it wants. At those times the CPS become harder and last a little longer too. The electric shocks also get worse and more frequent. Sometimes it’s like you’re lifted up into the air and then slammed back down to earth. Sometimes it’s like being hit in the head with a baseball bat. Sometimes it’s like a pulling in the brain from one side to the other.

That odd feeling in the brain never goes away anymore. It’s been there since my last big episode. It’s worse on some days and better on others. It scatters your thoughts and makes it hard to process stimulus. It destroys your short and mid-term memory. It makes it difficult to formulate your thoughts. It makes you ultra-sensitive to sound and light and sometimes movement around you. It utterly destroys any ability whatsoever of multi-tasking. Conversation is anywhere from being strenuous to nearly impossible, depending on how strong the feeling is on a particular day. One must bear in mind, however, that these things are my individual experience and that every Epilepsy is like a fingerprint: no two are the same. The degree and exact components of all the above varies from Epileptic to Epileptic.
The medication is supposed to keep all those things at a minimum, and it does if all other circumstances in your life are properly balanced. Anything at all can upset that balance however, seemingly at the drop of a hat. If that balance gets upset then the partial seizures can get worse. Much worse. Very much worse. They can become very long and very intense. They can get so bad that you can’t even talk, can’t stay on your feet. If that balance isn’t restored in time you can begin having grand mal seizures again.

That’s why Epileptics are under the constant care of a neurologist. It’s his job to constantly monitor your condition and adjust your medication accordingly. Your quality of life depends on how good your neurologist is.

Life will never be the same again…

So that’s my Epilepsy story. That’s how I got to be where I am today. I would like to use this blog to record my future Epilepsy adventures as well as other information/thoughts on the subject. I have however, due to the Epilepsy, become a person who often endeavors to do something like that yet gets caught up in the daily struggle and forgets to continue at some point…

I would love to hear any thoughts or comments anyone may have…”

It’s amazing to see many other epilepsy warriors come together to share their stories. A massive thank you to Mike for taking the step, and joining myself at Upon A Sunshine, and raising awareness of epilepsy. This was one of Mike’s first posts on his own blog. If you’d like to read more, you can read his blog here. Thanks again, Mike.