Update - Winning The Seizure Lottery
This is a followup to my post here: https://www.reddit.com/r/TMSTherapy/comments/1urc23r/winning_the_lottery_nobody_wants_to_win_i_had_a/
I'll go ahead and start out by saying there's still no real conclusion about why I had the seizure, which is why I have waited so long to post any sort of an update on this. I really wanted to be able to tell you all for certain if it was, or was not, caused by TMS. At this point it seems like it's still going to be a while...
So I had the seizure on a Wednesday afternoon. By Friday morning I got in to see a Neurologist. The Neurologist said he didn't think the seizure was caused by TMS, his feelings were that I must have some underlying condition, and TMS simply aggravated that condition, which led to the seizure. One of his points was that I had completed 30 prior TMS sessions without a seizure. He also said he thinks if I'm going to have another seizure, it's going to be soon. Oh boy, let me tell ya, it's great living your life thinking you might have a seizure at any second. I have been having to take all kinds of precautions, like not grilling food or using the front stove burners, in case I seize up and end up face down with my face cooking.
He also informed me I am legally required to stop driving for the next 6 months. It turns out most states have laws where you cannot drive for a period of time after your first seizure, I think most are 6 or 12 months. Mine is 6. So that was great news. I haven't driven anywhere in over a month now.
I had an EEG done the following Monday. Pretty interesting, they had a bunch of actual bedrooms in this office with normal household beds. Apparently for some tests they have patients sleep there overnight. In my case they only tested me for about half an hour, since it's all the Neurologist ordered. They flashed some lights in front of my face and then had me lay there for a while. I got the results a couple days later, and nothing abnormal was observed in my EEG data.
Now for the brain MRI... This took forever!!! The Neurology office has their own MRI machine and insisted I get it done there, but they did not have any available appointments for an entire month after I had the seizure. I finally got that done a couple weeks ago... Nothing abnormal was observed.
So at this point it doesn't seem like there's anything wrong with my brain, nothing that would cause seizures anyway 😁 Someone from the Neurology office called me to tell me the MRI was normal, and she said if I had any questions for the Neurologist, I could ask him at my next follow-up appointment... Which isn't until January!!! I told her I desperately wanted to talk to him sooner, since I'm still living my life thinking I might have a seizure any second. Like at this point does he even think the seizure was caused by anything other than TMS? She said she would try to get me in sooner and would get back to me... A couple days later she called me, and the earliest she could sneak me in still isn't until early October 🤬
That's all the news I have until I can finally see the Neurologist. I do have a little more info to add that wasn't on my original post though, since I wasn't thinking very straight when I made that post. Your brain doesn't just bounce back after having a seizure, and I was struggling hard for a while after it. The first week was rough, and it still took me another couple of weeks to feel like I was back to normal again. I would get confused over the simplest things, and I would get mentally exhausted so easily. Working from home, and most days I was mentally drained by like 1pm and would have to call it quits for the day and go lay down.
So a big thing I neglected to mention on my original post was how poorly trained some of the staff were at the TMS clinic, and they were very inconsistent with the coil placement, depending on who was working that day. A couple of the TMS techs only filled in as needed, it wasn't something they did every day. Plenty of sessions I would get hooked up and have to ask the part-time techs to try to adjust the coil because it didn't feel like it normally did. After 30 sessions I knew exactly where the coil should have been tapping on my skull, so it was easy to tell it was off. There would also be other effects like twitching or pain in places I didn't normally feel them. And also the coil just feeling really weak when it didn't seem it was lined up right.
On the day of the seizure, the tech working was someone very new and part-time. She had only run my TMS sessions 3 times prior. I had her stop to try to adjust the coil a couple of times, and right before the seizure happened she was actually moving it while the machine was running. I think she had it stationary for a short while before the seizure happened, maybe 15 seconds, maybe 30? Maybe longer? I truly can't remember it well enough to say, but she was still standing there in front of me when the seizure started, so it couldn't have been very long. This was also something I think I neglected to mention to the Neurologist, I can't remember half of what I even told the Neurologist because my brain was still fried that day. This is also a huge reason I want to meet with him again ASAP.
So my current feeling is that TMS caused the seizure, but it likely could have only been because of the high (135%) intensity combined with the coil zapping my brain multiple places other than the place it should have been zapping me. I'm not entirely sure what the odds are of having a seizure from the coil zapping you somewhere other than your prefrontal cortex, but it has to be a factor. I'm also dying to get the Neurologist to weigh in on that.
Meanwhile I really can't say if TMS helped me at all. The seizure really threw a huge wrench into my life and I haven't been feeling very good because of it. Truly not the outcome I wanted from this, and obviously I never would have done TMS if I had known this was going to happen. I'm considering doing Spravato, but definitely not at the same clinic that was giving me TMS. I also can't drive until January, so that doesn't help the situation.