I, Charles Randolph was diagnosed with drug-resistant idiopathic generalized epilepsy when I was 12 and so began my journey living with epilepsy. The data collected during the diagnostics (see prior article here) intend to identify the point of origin – where the initial spark occurred or where the candle was first lit within a dark room. Hopefully, these diagnostics have shed some light; sometimes they do – sometimes they don’t – and sometimes they are inconclusive, such as myself, who had had an EEG that was positive for epilepsy, and others when older that were negative despite still actively having seizures and vagal nerve stimulator implanted within my chest. In yours or another, I pray they calm that spark or extinguish it as quickly as wetting your thumb and forefinger, and pressing them upon the wick.
There are four primary types of epilepsy and four types of seizures. We will start with the types of epilepsy:
• Generalized – a seizure that affects a large area of the brain, multiple regions.
• Focal – a specific area of the brain
• Temporal lobe epilepsy – seizures originating within the temporal lobe.
• Childhood absence epilepsy – a childhood condition that may be outgrown and often associated with lapses in attention.
Four types of seizures
• Absence or petit mal—for example, you stare out into space and are unable to focus or speak. Speaking from my personal experience, these can be described as auras to those prone to more severe seizures. Auras are like a Spidey Sense telling the epileptic to find safety. It’s an interesting mechanism.
• Myoclonic – You may experience uncontrolled twitching or jerking, although you most likely retain consciousness. Again, in my experience, these can be a warning as well. I used to experience these in my right arm and left eyelid when I was younger—commonly brought upon by a stimulus, for example, flashing lights. If I stopped my actions, I could forgo the onslaught of a grand mal. So listen to your body – sometimes I try to fight it, and it always wins.
• Atonic seizures, aka drop seizures, last for around 15 seconds. They are coined a drop seizure due to a sudden loss of muscle tone and fall.
• Lastly, grand mal is more commonly referred to now as tonic-clonic. These are violent seizures that consume you in entirety. You will lose consciousness, fall, experience severe muscle contractions for up to 3 minutes or more, and possibly take you days to recover. I am most familiar with these, and to express the severity, here is my experience.
Mine would last up to 3 minutes – right about that time when you should call the ambulance and take me up to 3 days to recover from. I would convulse so violently that my shoulders, in particular my left, would move in and out of the socket again after again. By 22, my arm would no longer stay in the socket. The pain was constant. Upon an x-ray, we discovered the rounded portion of the humorous that rested in the socket was no longer round but flattened with labral tears and broken shards of bone scattered throughout the joint. A surgery followed, and seven years later, another to repair further damage. Simply put, your bones may grind.
I’ve come to, alone, pulling myself to the bathroom sink by way of a cabinet drawer to see a bloody face slowly rise to the mirror and a body lacerated from the belly button to the chest. Or the awakening to a kind group of EMT’s above me in a public space. There is a population that experiences this, and for those who do, I commend your strength of character for literally getting back up again.
In addition, a specific challenge that may arise in your journey is a struggle with anxiety and agoraphobia or a fear of places and situations that might cause panic, helplessness, or embarrassment. More simply put, a fear of leaving your home. This can be a struggle to overcome, notably if emotional distress lowers your threshold and, therefore, increases the likelihood of a breakthrough seizure. I’ve experienced this throughout my life, and it ranges in intensity. When you leave your home, you are no longer in an environment you can control. That control is a comfort – to this day – whenever I walk into a room, I look for corners or sharp things I could fall upon.
My best advice is to consider the environment you must enter as a safe place. Train your mind to feel its benefits rather than its negatives. For example, my place of work provides me with a method to maintain my independence. When those thoughts and feelings arise, don’t try to stop them; acknowledge them and tell yourself it’s okay to feel them and that they are no longer needed. In time, these feelings and thoughts will reduce.
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Now, somewhere between the diagnostic and diagnosis stages, you may have your license suspended or be told not to drive. This is reasonable if uncontrolled. However, it can reinforce the agoraphobia and reduce your independence. This is a struggle, yet with the advances in self-driving vehicles, this may soon no longer be a concern.
So, I ask Tesla and others to consider the increase in the quality of life you can provide to a population of people by subsidizing vehicles and/or subscriptions to the self-driving service for those with such a condition. It would be life-changing and give safety to themselves and others. A fantastic health-campaign it would be. Any help with this would be appreciated.
Note: This is a 4 part series, I call The End of Strife, about what you may experience with Epilepsy, beginning with diagnostics, a diagnosis, treatment, and a conversation regarding identity – something those like myself may struggle with. I’m Charles Randolph, the creator of ToSpeakOnline.com, and this is my experience. I hope this may help another.
Written by: Charles Randolph
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