When I think back to when I first started having my seizures there are only a few things that come to mind. Those are pain, numbness, stress, confusion, and vulnerability. It was about 3 years ago in July. Bry and I had only been together a month or two. I’d had gone to a doctor visit and been on an anti-depressant for about a week but I didn’t like the way I felt so I stopped taking it. Word of advice never do that before talking to your doctor first. After I stopped taking it the seizures or the “twitch” started. I went to the doctor and they said my Vega nerve in my chest was pinched. He then proceeded to prescribe me Valium. That did a whole lot of nothing except drug the crap out of me. So everything kept reoccurring without any solution or relief. I remember practically living in the hospital. Up until I got pregnant I was in and out of the hospital all the time. Not that I wasn’t when I was pregnant also. But I think I tried to keep my stress under control more. I will say that the worst seizures I had were when I was pregnant. I would have to sit there and do kick counts afterwards to make sure she was still moving. If not I had to eat or drink something sugary to get her hyper. If neither of those worked it was off to the hospital which we did have to do a few times. I’ve never been so scared and freaked out in my entire life. This didn’t help the situation at all.
For a while seizures controlled everything I did. I was a walking zombie. My big motto now is “I have seizures, seizures are not my life.” There are few things that can give a person comfort when it comes to this type of a situation. Especially when you are me; so high strung or wound like a top some would say. I think the worst part was no one would ever diagnose me. They would give me all kinds of medications and send me on my way. I never felt like the problem was going to get solved. Until one visit to Primary Children’s where someone suggested I might be having seizures (still no diagnosis). At a later visit to The U of U I was finally diagnosed with Pseudo Seizures. When you look it up you’re going to read a bunch of nonsense. But what they explained to me was they were brought on by stress. This made a hell of a lot of sense. As I said I’m wound like a top. Basically when my brain is “stressed” it misfires. For everyone else the get a normal reaction like sweating, jittery, heavy breathing or whatever it may be. Imagine your stress is walking down a sidewalk in your brain. At the end of that sidewalk is your reaction to that stress. It keeps on walking all the way to the reaction and Wala! In my brain I get half way there, trip on a rock, fall off the curb, and get hit by a semi. It’s the simplest thing but so complex. I ended up going to counseling after many suggestions that this was my only option. I still go to this day and actually enjoy going. Even if it wasn’t solving the entire problem I know it was helping. Just not entirely; I still needed a nudge.
It went on like this for the longest time. Then my insurance ran out so I couldn’t go to the Neurologist when things progressed into full body seizures. They require cash up front or you aren’t able to be seen. But I was still able to go to the emergency room when things happened. The problem was it was a very expensive way to never solve anything. Up until 3 or so months ago I never saw a neurologist. We did end up deciding to spend the money out of pocket because they had gotten so much worse and my “treatment” at the time wasn’t working. So we went and saw the doctor and he recommended I get another EEG. I’d had one before that showed my seizures weren’t epileptic. But this was when they were a twitch. We didn’t know it because they had progressed if they would show up this time or what results we’d get. Sometimes the whole process you go through feels like you are a hamster in a ball. You just keep rolling and rolling. No matter how fast or slow it’s the same thing over and over. It was a relief to hear that nothing had changed but at the same time it wasn’t. I still had no answers as to what I could do to stop them.
During the time that I was waiting to go in for my next appointment with them i had to go to the emergency room. This was sometime afterwards and I had moved back up to my mother in laws. We had some friends over and we were playing cards. Everyone but me was drinking because I was told it increased the likelihood of me having a seizure. But every now and then I’ll have a sip of someone’s drink. But it is very rare. For whatever reason on this night I decided I’d have a shot of vodka in my orange juice. Within thirty to forty-five minutes of this I started feeling like I do right before I have a seizure. So I went into our room and sat there for a minute just in case. About five minutes later I had my first one and ten minutes after that I’d had four of them. It was pretty overwhelming. I’ve had a bad back for quite a while now but after these episodes it makes it pretty unbearable. Up until the next night I was able to stand it. But then it got to where I couldn’t just ignore it. So we made a trip to the local hospital in Heber. Mainly I just needed something for the pain and didn’t plan on the bomb that was about to go off in my face. My doctor went through all the basic questions I’d been asked before and gave me some medicine to manage the pain. But then he asked if I had ever had an MRI done of my back. I told him I was sure I had. But I’ve had so many things done in the past for my back, chest, and for the seizures I wasn’t quite sure. He proceeded to look in my records to see if he could find anything. Now this is where the story takes a hard left and immediate right. Are you sitting down? I highly suggest it. I know I’m glad I was at the time. He pulls up my file and finds an MRI from almost exactly two years ago. In the results it says I have a bulging disc exactly where my pain is and some other technical terms I can’t explain. Now this would have been no big deal had I known about it or been treating it. I was never told about any of it when the results came back. Also, no other doctor in the two years afterwards had ever seen it or even cared to look it up like this one had. What …. The …. Actual …. F@%&.... Right? I was blown away and didn’t really know where to go from there. Luckily I’m not the doctor!
There is a happy ending to this story believe it or not so don’t get too depressed on me. The ending to this long winding torturous road is actually quite happy. The doctor decided I need to try Lyrica which treats seizures, chronic nerve pain, and fibromyalgia. I have all three so it’s amazing for me! The only down fall was it makes me really drowsy and ditzy. So during the day he had me try Tramadol which I’d actually had before. All in all I couldn’t really lose unless the Lyrica didn't work. Luckily for me it did work and has changed my life drastically. I am happier, more energetic, outgoing, and in less pain. I’ve also let down my guard that I always have up with people. It’s like a weight was taken right off my shoulders and I’ve been able to become the person I've always been inside. The other great part is since I’ve been on it I’ve been seizure, stress, and smoke free. The only words to describe it are amazing! A couple days after the ER visit I followed up with my primary physician who suggested we get another MRI. This is the only bad part to the whole ending. I know, I know I had to go and get all Debbie downer again. I can’t get it until I have insurance because they are so expensive. I am in the process of getting insurance now I’m just waiting for the approval or denial letter. Keeps your fingers crossed! I think our odds are good!
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