I had my first seizure in 2001. I was at work loading concrete into a mixer, and I woke up with everyone I worked with standing around me, plus paramedics. I was taken to the local hospital where they did a CT scan. The doctor ordered the CT as he was ending his shift and said if anything turned up, to call him. After seeing the CT, the staff there figured I was just working too hard, and I went home after being released. The doctor came in the next morning for his shift, saw my CT, and called me at home. He told me they 'found something' in my ct, and thinks I had a seizure. He told me to get someone to stay with me. He made a call and I saw the neurologist that week.
The neurologist told me I had an AC. I continued having seizures, up to twice a day, usually about two to three times a week. We tried nearly every combination of seizure meds and nothing seemed to work very well. With the neurologist, we decided surgery might be needed and I saw a neurosurgeon who quickly booked the surgery. Before the surgery, I had a sudden onslaught of many many seizures. They airlifted me from our local hospital to Victoria BC hospital when they couldn't stop the seizures. They heavily, heavily medicated me and got the seizures slowed down by probably 95%. They loaded me with pheno-barbital… to the gills. A later date was set to meet again for the consult of surgery. Seizures were reduced to such a small amount by that time that surgery was considered unnecessary. Slowly the seizures became less and less, and then nothing. Eventually I was happy to wean off all meds and I remained stable.
Over the next few years I had times of basically debilitating troubles with depression. I experienced extremes of depression that presented, at times, almost as a bipolar depression, except that the doctors didn't quite feel it was 'true' bipolar. Later I found out that this is one of the symptoms of these so-called "asymptomatic" AC's. I had troubles also with balance, speech, and began losing what was once incredible memory. License plates, phone numbers, id numbers like care cards, drivers license & bank card numbers- you name it, I could remember it at a glance. Slowly, these all fell away for the most part. Math- I was (and still am, somewhat) incredibly good at math. Family would sit around at Christmas and throw long, complex equations at me with double digit multiplication divided by other double digit numbers, and I would have it down to the third decimal place or so before they would finish typing it in the calc. That's mostly gone now.
I have major troubles with memory now, as well as speech recognition, speech forming (I have began stuttering a bit lately), and reading comprehension is way down. I've begun to use Lumosity, and a website called Spreeder (for speed reading, very fascinating) to try and regain it, but the results are questionable. Finding the right word is hard at times. Remembering fairly important things that my wife and I have talked about is definitely tough a lot of the time. My balance is worse all the time. My used-to-be-color-deficient has now settled at a very low, except that at moments I will notice a lot of the white or lighter coloured objects in a room will have a real intense blue hue to them. I've had a whooshing sound in my ears build up more the last couple years, especially when I bend over. I get insane headaches, so much so that our hospital actually sent me home with some hydromorphone for when it gets really bad. I try not to waste them and use them sparingly, no matter how much my head begs me for them at times. I try not to let on too much to my wife, she gets stressed thinking of the possibility of losing me, she's a major stress case but bless her heart, she loves me and I ain't about to argue it. I love her to no end.
The present. At the end of January, I had TIA (mini stroke) like issues. Right side temporary paralysis. I had zero balance for a few days, and was admitted in the hospital. Out of all that, one of the resident doctors told me that for sure I had 'conversion disorder', and at one point when trying to affirm it was getting better, had me walk just a few steps at which point I landed on the ground, and hurled uncontrollably. They left me there to crawl back up to my own bed. They even had one of the hospital psychiatrists come see me to interview me to see if I had this other disorder. She told my wife and I in the same room that she didn't feel that was the case, as we had both talked together to her, and it just did not fit me in my case. The resident doctor told me he wrote a letter to my doc saying they gave this diagnosis. What they actually sent my doctor was 'possibility of conversion disorder, but not enough information to diagnose'. What this did was put a label on me that comes up constantly when trying to get medical help. I also have no elliptiform activity on my EEG, something that is apparently common with AC sufferers. After chatting with Catherine she has told me that TIAs are closely linked with AC's, that TIAs are far more likely, (which we already have a family history of in the young), and that TIAs make ACs act up and get worse. My close friend believes that I'm too 'high functioning' for the medical community to see how much this AC actually affects me.
My AC is in the left temporal lobe, taking up the greater portion of it. My neurologist figures the right side took over most the functions that would have been lost otherwise.
In the past couple of months, I had my first set of seizures. It was on public transit, and I had nearly gotten into a fistfight with a guy on the train for trying to sit in an available seat as the crowd of us rushed on board. I knew I needed a seat quick. I woke up looking at the same guy's shoe, and got taken to hospital by ambulance. They said I had had 5 seizures, if I remember correctly. I chalked it up to the brain trying to repair itself, as I had been told could happen, and didn't think much of it and didn't start any meds. A few weeks later it happened again- I was at school, and had a few, I can't remember how many they told me now, 2 I think? A guy tried to hold me still during it, I'm still feeling that one. I was taken by ambulance to hospital again. I was told by school that I needed a doc's note to say I could continue in my course, with the long hours, lack of sleep, and stress. The doctor would not give that to me, feeling uncomfortable with being able to say for certain. Buh-bye school. >:(
3 days later, another one. Single one, at home. 2-3 days later, another one. They found at the hospital that my level was way down- a 13 where it should have been 40-80. They loaded me up again on Dilantin, 1800 mgs. We (doctors, nurses, my wife and I) figure this next mishap was due to the speed I received it at: I (am told) pointed at my IV to say 'too much', went unresponsive for 5 minutes or more, and they did CPR on me, and got me back. I came to, and oh my god was I ever….HIGH. Everything that anyone said around me in that hospital was the funniest damn thing I had ever seen or heard. The nurses asked my wife what the hell the docs gave me, since she hadn't left my side, and they were shocked to find out that it was just the dilantin. I had a toxicity from it. All of a sudden, I felt my grin get smaller and smaller and smaller, to a frown. It went away. I noticed even my voice changed and got deeper again. I was almost disappointed. Until a few minutes later, when it came back again. A nurse came in and said 'hi', so I said 'HIIIGH!!'. Funny moments. Eventually I came down the same way again, and was discharged.
About a week and a half later, and my levels went down again, BAM another seizure. 4 actually. Head hurt something awful from falling and hitting my head on our bed. Plenty of painkillers for my raging headache, and that brings me to tonight, writing this to add to the list of stories- which I hope can help someone else :)
If I can tell you anything, just keep fighting for the medical attention you need. Don't give up, just get MAD and don't take no for an answer, and go for what you feel will be best for you. Also, do your research. My wife and I are committed to getting this damn thing out of my head, or at least fenestrated, so that I can live a normal life. As normal as possible.
Do NOT give up. You can do it.