When I talk about my Seizures, I tend to classify them in two ways: physical or mental. Mental Seizures are the ones that only affect my mental fortitude. Physical Seizures are the ones that alter my bodily actions. When I look back at my history now, it is much easier to see the times when my body was involved. But honestly, there were so few times in my childhood and teenage years, that they were always chalked up to circumstances.
But if my Seizures had never manifested in an obviously physical way, I wouldn’t be here, with a diagnosis, learning to cope and sharing my story.
Meet the March Hare
The first type of physical manifestation is a myoclonic seizure.
At 11:30pm, December 29, 2016, I had my first myoclonic Seizure, that was notable.
It began with a strange feeling, a warmth, cascading over my body. Within minutes, I felt exhausted. I went to lie down, and I noticed an odd pulling sensation in my face. Within a matter of a minute, the entire left side of my face was in full spasm mode. The left side of my lips began to draw upwards, my cheek muscles contracted and released over and over. My eyelid began to quiver, and then my eyes began to rapidly move from side to side (nystagmus).
All in all, it lasted about 1.5 minutes, and afterwards I fell into a deep sleep, waking to a feeling that something odd had happened, but foggy on the details.
The 30th, was my 30th birthday.
The 31st, was the 1st anniversary of my Dad’s death.
My birthday was completely uneventful, as far as Seizures. But the next day was the beginning of the worst.
My family and I had spent the day with my Dad’s parents, visited my Dad’s wife, paid respects at the graveside and had gone to my Mother’s house to ring in the new year. Hindsight is 20/20, so it is obvious to see the reason for the Seizures… Stress.
While at my mother’s, my face began to spasm again. This time, in front of my entire family. And where I couldn’t see the need, they saw very clearly, that something was wrong.
I had a LOT more facial spasms, as my Mother and I worked to find a doctor for me to see. I also took on several nicknames due to these. LOL Elvis face, stroke face, two face… My family knows how to lighten my spirits! Humor is my favorite medicine.
Over the time it took to find a neurologist, the spasms spread to both sides of my face, and my neck.
The spasming episodes last no more than 2 minutes at a time, but would occur several times a day. And eventually it made my entire left side weak.
Now, since beginning medicine, the spasm are few and far between. But, they still manifest during stressful times and follow my cycle of hormones.
As far as all of my Seizures go, the spasms are definitely the easiest with which to cope.
The physical effect, though embarrassing, doesn’t particularly hurt. Occasionally I will be sore after an extensive spasm, but it is no more than a light muscle soreness. But, I remain fully functional and conscious.
In addition to myoclonic seizures that happen as spasm sessions to certain sets of muscles, there is also a type of myoclonic seizure that is considered a myoclonic jerk. During a spasm, the muscles twitch repeatedly. Just like an eye twitch. During a jerk, a single muscle will contract quickly, just once.
This is another piece of my condition that I had always experienced, just never realised they were an issue.
Basically, you’ll be just doing whatever, and suddenly it feels like someone has zapped you with a taser. Just a jolt. The single muscle will jump, and there is an electrical shock sensation. Most commonly, I experience these in my head. Though there is no muscle to jerk, there will be electric shock sensations across my scalp. But, I also experience them a lot in my hands. To most people, it just looks like I’m adorably clumsy. But, at random, my hands will jerk open and I can be seen, basically looking like I just decided I was tired of holding onto whatever I had in my hand. (commonly my phone lol). While it can be extremely annoying, again, it isn’t really painful.
The second type of physical seizure I experience, is a tonic seizure.
During a tonic seizure, muscles become rigid. It is kind of like a really good total body stretch. You know, the ones that happen right when you wake up, and all of your muscles flex to full extent? Except, instead of flexing, the muscles contract.
It is before these that I will experience the hallucination of burnt cookies. Within seconds of the smell, my arms and legs will curl me into the fetal position, my jaw will lock shut, and I’ve been told that I make a hissing type of noise, though I am unaware of the sound. During this time, I am fully conscious, but not quite aware, and completely unable to do a single thing. This would have to be probably the worst seizure I experience, physically. After one, I am exhausted, tired, and extremely sore. A bad tonic seizure can make me sore for 3-5 days. And mentally, it is rough as well. During the seizure, there is an overwhelming feeling of doom. Sometimes, tears will stream down my face uncontrollably. My head scrambles, fueled by fear, into a frenzy and one single thought emerges… Help me. It can be a truly terrifying experience. And afterwards, there’s a mental fog that hangs around as well. A brain fatigue, if you will. Making it hard to solve problems, think clearly and remember information.
Many a day after a tonic seizure, I have spent in bed, just lost and sore.
And then there’s Dormouse.
During an atonic or “drop” seizure, my muscles lose all rigidity. I become a wet noodle. My body becomes limp and I just fall unconscious. To an onlooker, it looks like a clear case of narcolepsy. One minute, I’m going on like normal, and suddenly, I just hit the floor.
When I awaken, I am only aware that something has happened. But I have no knowledge or memory of the seconds preceding or the duration of the event.
Afterwards, there is almost always a deep confusion. It’s as if you have been abruptly awoken from a deep and much needed sleep. Fogginess, slow reaction time and fatigue.
Though these Seizures are not nearly as hard on my body as tonic Seizures, they are undoubtedly my most dangerous type.
Unlike the hallucinatory warning I receive before a tonic seizure, which gives me at least 30 seconds to find a safe place, the warning for my atonic episodes gives me enough time to simply know it is about to happen.
And in all honesty, I only know that because I have experienced them while being around people. I do not actively remember the minutes directly before it happens, but I have been told that I will suddenly stop what I am doing and say “I don’t feel right” or “I’m going to pass out” within seconds of the actual loss of muscle rigidity.
I have been incredibly lucky thus far, and have only had my atonic Seizures around my husband or while already sitting/lying safely. But the risk for hurting myself is much higher than with any other type.
There’s a mental fear that comes along with all of my physical seizures: the inability to move. I happen to be slightly claustrophobic and have always had a nagging fear of becoming catatonic. It may seem crazy, but when my body just won’t do what I want it to do, those fears rise to outrageous and overwhelming. This fear, during physical Seizures, are the loudest tick on the pocket watch of the white rabbit.