I could probably come up with a more witty, more descriptive title for this post, but the experience of having a seizure is too horrifying to encapsulate in just a word or two.
I’ve now suffered two seizures in my life, just about two years apart from one another. I’ve had some intermittent “seizure-like episodes”, which frankly would be classified as seizures, but for me they aren’t even in the same realm as the other two seizures.
The first was a grand mal/generalized tonic-clonic seizure – the dramatic type that people generally associate with the term “seizure.” I remember it starting, but obviously, I had no idea what was happening.
I had been having some strange sensations on my left side, almost like a feeling of electrical pulses or currents creeping up from my foot into my leg. On one or two occasions, that feeling traveled all the way up my left side into my face. Of course, I later learned that these were in fact seizures. However, I thought I was perfectly healthy, in tip-top shape. I never imagined in my wildest dreams that these episodes were seizures, let alone the first signs of brain cancer.
As for the grand mal “big daddy” seizure, it began with that same creeping feeling beginning in my left foot. It started traveling up my side and very suddenly, my chest became extremely tight. There was almost this warming feeling/rush too. It’s a sensation I find hard to describe, but it’s what they call the “aura” before the seizure. Although I could technically still breathe, I began clutching my chest. At the time, I was wearing a baseball cap and lifted it up thinking maybe that would help give me some air. It was at that exact moment I demanded 911.
Just after that, I lost the ability to speak and all control of my left leg. I actually recall thinking to myself, “Why is my leg jerking like this? I’m not telling it to do this.” Almost like an out-of-body experience, I was looking down at myself and seeing this happening, but having absolutely no idea what was happening. While I don’t remember the specific chronology, around the same time my left arm and head began violently jerking. It was then that I lost total consciousness.
Apparently while I was unconscious, but the seizure still continued, my contacts popped out of my eyes. The portion that happened while I was awake was violent enough. I still cannot fathom what it must have been like at its peak (I guess if that’s the right term to even use).
I was taken to the E.R. by ambulance. Looking up at the ceiling and the florescent hospital lights flashing by while I was being wheeled into the E.R., I remember the EMTs asking me my name. I didn’t know it. They asked me if I could tell them where I was. I couldn’t. All I could utter was, “I don’t know” over and over again. Even though I can only recall a very brief portion of that time, one thought that still haunts me to this day was the feeling that this was the end. I was going to die.
After being seen in the E.R., I learned that there was a lesion on my brain, which had caused the seizure. Obviously, after several more tests and ultimately brain surgery, it was confirmed that I had cancer. The strange thing though is that the seizure scared me more than cancer and I believe it has left me with so much more PTSD.
Following the surgery, did I worry the tumor would recur? Of course. However, if that did happen, I believed it would be a progression that I could sort through/deal with/face over a period of time. Yet, I would never know when a seizure could happen. I had no control over where I would be, who I was with, what I was doing, etc. There was nothing I could do to ever prepare myself. Sure, I took several seizure medications, but there was always that chance. Also, for quite a long time, I believed every little sensation was the beginning of another seizure. I truly lived in fear.
As with most things in life, as time went by, things got better. I didn’t worry every time I left the house about what could happen if a seizure came on. I worked out without the fear of collapsing. My doctors cleared me to drive, although I never traveled more than a few miles on my own. I even began feeling comfortable on the subway again, which had constantly frightened me. (Being enclosed in an underground subway car, filled with people who aren’t 100% likely to rush to your aide, without any easy access to medical attention, was the cause of many anxiety filled days).
Ironically, just a few weeks ago I thought back on that intense, overwhelming fear of a seizure and truly relished in the fact that I had almost entirely overcome it. And then…
As I sit here today, I am not even two weeks out from the second major seizure of my life. So much of the fear has once again reared its ugly head, and now there’s more.
I don’t know which of the two seizures were more frightening, but as of now, the second one is winning. If the first was “big daddy” this one was “big momma” and we all know, momma is usually scarier than daddy.
Without fully detailing the chaos that surrounded the second seizure, I had been tapering off steroids in the weeks prior due to some vague blur on my last MRI. (It’s believed that the taper contributed to my second seizure, as no one had thought to inform my neurosurgeon of the taper and he would have never reduced the steroid had he known, but… anyway). During that time, all of the radiation treatments had caused my cells to die, breaking down the skin around my surgical site, and causing a major infection. It’s never fun to see your titanium plate exposed! So, after days in the hospital, I was finally scheduled for surgery on a Friday. In an effort to let me rest, sleep in my own bed and prepare for at least another week or two in the hospital, I was sent home Thursday.
I went to bed Thursday evening having to mentally and emotionally prepare for my third brain surgery. As if that wasn’t enough… I woke up at some point in the middle of the night, violently sitting up. There wasn’t a second thought in my mind. This was a seizure. I don’t even think my body and mind had time to experience the “aura.” I just knew immediately what was happening.
As I sat up, I yelled at my husband to wake up, screaming, “I’m having a seizure. Call 911. Get my Ativan!” The poor man was barely conscious and yet I was in desperate need of help. The seizure didn’t begin too intensely even though I realized what was happening. I was even able to continue yelling at my husband to follow my orders!
The twitching began in my left leg exactly as last time and started to creep up my left side into my left arm and hand. However, the spasms weren’t bad enough yet because I was able to actually open my pill box and take some Ativan. Almost immediately after that though, it became very ugly.
My entire left side began to violently twitch and jerk. My left hand became clawed and my toes were curled under. My speech became extremely strained until I lost it completely, as I began to literally snort and drool. I was able to use my right hand to steady myself against the bed, at least keeping me safe from falling off.
I think one of the strangest sensations during the whole experience was that I remained completely conscious, knowing exactly what was happening and worse, what could happen. My doctor had always told me that if I ever had another seizure, I would have to do my very best to stay calm. I never thought that would ever be possible, but this time, I did say to myself that I needed to breathe and hope that this would pass. Frankly, my attempt at staying calm utterly disappeared at the moment I could only communicate by snorting.
And just as it had started, the jerking and twitching began to slowly subside. I could talk again, thankfully. However, my entire left side was basically dead. I sat there trying to move my left leg. Nothing. I tried lifting my left arm. Nothing. I picked up my arm with my right hand, but it just flopped onto the bed like a dead fish. My fingers also remained clawed. I was completely convinced I was paralyzed and a hundred scenarios rushed into my head, while I imagined all the things I’d never be able to do again.
Once the EMTs arrived, I was able to communicate fully, but the sensation on my left side had yet to return. After a few minutes of oxygen, I began to feel what I thought was another aura, but thankfully, it was actually the sensations in my extremities coming back. Slowly, I was able to move my leg and my arm, although they were clearly weak. I was also able to move my fingers around and no longer felt like a clawed lobster woman. Enough time had passed that it didn’t seem likely another seizure would come on. So it was back to my hospital, hours early for my third brain surgery with the added bonus of a sudden seizure.
It’s now almost two weeks later and once again, my 12-hour surgery is not what keeps me up at night – it’s the fear of another seizure. I hope and pray that the feelings that consumed me after the first seizure subside again after this experience. Unfortunately, it’s going to take some serious therapy, meds and strength of mind to get back to where I was just weeks ago.