I have always had nerve issues in my right hand. Repeated motions would cause spazms and tingling, but it was never anything extreme.
A few years ago, I spent the fall semester of my junior of college working almost non-stop on a large, effects my final grade kind of project. I was working with a group on the effects of Adderall on the body when it is used as a study drug instead of prescribed by a doctor for ADD. Ironically, our group leader had severe ADD so he would pop an Adderall before we would come over to work. He would work non-stop and we would all work to keep up with him. It was difficult because we wouldn’t look at the clock and the next thing we would know it was 4am and I had to get up for an 8am class.
Now it was during this time (the crazy project time), in November, that I woke up to extreme numbness in my right hand. My hand had completely clenched and no amount of massaging the muscles in my arm could make it unclench. Then I blacked out, only to be awoken by my alarm clock the next morning.
The next day, I told my boyfriend at the time about what had happened and he said “Babe, I think you had a seizure”, which I laughed off because I didn’t have seizures.
Fast forward a month, and I’m home for Christmas (we did amazing on the project, in case you were wondering), when the same thing happened again. Only this time, I woke up to the first aid squad in my room, with my parents and sister freaking out. Also I had seized so hard I dislocated my shoulder. I was in and out of consciousness all day that day, but the ER doctor didn’t want to put me on medication because it was my first seizure, and sometimes this shit happens. Except that it happened again 5 days later, only this time, I was my usual, perky self (despite a second dislocated shoulder). And with that, I was on seizure medication. While seizure meds are great at controlling seizures, they are not great at letting my delightful personality shine through. It felt like I was living in a fog, not completely aware of my surroundings. I knew that my real personality was inside me some where but I was unable to find her and let her out.
My winter break was filled with doctor’s visits and physical therapy and tests and fog. I was scared to go to bed, too afraid to sleep. I would have panic attacks most nights because I didn’t want to have another seizure. My days were foggy, but I would get tired very easily. It was like all of my energy had been drained from my body. Even with all of this, the tests came back negative, but they all said that the disorder was connected to stress and sleep somehow. At the doctor’s suggestion I started going to bed early, and tried to keep my stress level low. The fog persisted
Back at school I had a hard time keeping up because of the fog, which was hard because I had always been bright.
Because of my negative tests, I spent spring break in the hospital doing a sleep study. One of my parents were with me the entire time, and my sisters tried to make it better by making me boxes of boredom busters, but there was just more fog. Only this time there were electrodes and no showering for a week and being watched constantly and beds that re-inflated in the middle of the night and I was kept up into all hours of the night to see how my brain reacted (my dad was really cool and stayed up with me, and walked with me around the hospital until 3am because I wasn’t allowed to sleep) and fog, just so much fog. During this time of testing they were slowly taking me off my meds to see how my brain would react. That made the fog worse.
At the end of it all, it was decided that I would no longer be on anti-seizure meds but on anti-anxiety, anti-convulsive meds. It was great! After a few months, the fog cleared, I was back to being my peppy, energetic self, and I wasn’t seizing as long as I was on my meds.
Even with that, I still suffered from occasional panic attacks, and would have trouble sleeping. I would wake up with hand spazms and tingling, but no seizures.
The new meds worked great for about 5 years, until recently. They seemed to have stopped working, or at least aren’t working as well as they had been. In the past 2 months I’ve had 2 seizures while on my medication. These are hard because while the seizure isn’t super bad, for the week or so afterwards I am in a fog. I have a hard time remembering a lot of things and my talking is slowed down. My brain feels like a large filing cabinet that a secretary from the 1950s is going through quickly to try and find a paper that she knows is in there.
As you can guess, more seizures mean more tests. In a week, I’ll be doing an ambulatory EEG, where my neurologist will put electrodes on my head and I will try to live my life normally while carrying around a box that will record my brain waves. After looking over this information, my neuro and I will be talking about changing my medication, either upping the dosage or changing it entirely.
Aside from the annoyance of the machine, I am really scared. I hate having to worry about my body reacting to this unknown thing, that I can’t seen to control. I’m scared that my new medication will take away my personality. It’s been hard enough trying to find a fella, let alone one who is ok with dating a girl with a seizure disorder, who needs to go to bed at a decent hour and can’t get too stressed out. Without my personality, how am I supposed to find someone? My face will only get me so far, ya know? But with all of these concerns, my biggest is that nothing will show up on the EEG and that I will continue living with a disorder that I know nothing about.