by, 04-02-2015 at 02:49 PM (7618 Views)
For some reason, when I entered upon this endeavor, I think somehow I had imagined it might be interesting, perhaps adventurous, even in a way diverting. I was still young, in my early twenties; In my mind having learned much about seizures and epilepsy in general, yet only recently having taken full active responsibility for my own treatment of a seizure disorder I had since I was nine. My thoughts were that “It’s not my parents (Father) that are having the seizures, I am. I should be in control. Not them! (him)” I had lived independently for several years, working as a chef. This was taking a major step. I had gone to the Comprehensive Epilepsy Center to see if I was a candidate for surgery without consulting or informing my father of this. I figured he didn't need to know unless I actually was a candidate. Until then, I rationalized, it was simply a few diagnostic tests. I have to admit, it had proved a bit interesting in the beginning. I had met the woman that would end up becoming my wife in the admissions office, and she ended up in the room next door. (Well, that’s a whole other story!) Otherwise this was looking like every other hospital stay I have had, Boring as #*!!.
Tapered off medications and sleep deprived, I was into the middle of the 2nd week my video EEG to test candidacy for epilepsy surgery. Still zero seizures. I believe it was the 10th night there, about midnight, I was frustrated and incredibly bored. Suddenly I felt it hit me like a freight train; That feeling of impending doom that I had come to know all too well. It was so strong. The intense anxiety, the feeling in my stomach like giant butterflies. I could hear the EEG beside me going wild! But I realized instead of being afraid where I was, I could feel safe. I was in hospital bed with padded guardrails to protect me. I was being monitored. If I had a tonic clonic seizure, the entire staff would come rushing in. I need not fear.
I then thought about what the first thing I would lose as the simple partial becomes larger, and eventually generalizes into a tonic clonic. The answer was cognitive ability. This, at least from my perspective at the last moments I can remember; It seems to slip away when a simple partial becomes more than I can handle.
I also knew that stress was my number one trigger. So I quickly used a form of simple meditation I had recently learned that involves concentrating on relaxing each part of the body. This allowed me to focus on keeping my concentration, while also relaxing. I could hear the noise of the EEG return to more normal scribbles.
The simple partial seizure activity will probably show on the EEG as lasting most of the time between, decreasing and increasing in intensity all night long. It was during this time I was fighting the seizures, letting them return, then fighting them off again. This hospital stay was now turning out to be extremely fascinating! Of course under the circumstances, the seizures did not stop, so neither did I.
At about 10:00am who would walk in for a surprise visit? Dr. Yoshio Hosobuchi (My father.) Naturally because I had not yet informed him of my intentions to seek medical treatment outside of his influence by going to a Comprehensive Epilepsy Center for evaluation as a candidate surgery. Imagine my surprise seeing him walk through the door! He was supposed to be practicing neurosurgery in a hospital in Hawaii, 2,500 miles away!
Unfortunately for me & my personal experiment, my father's presence brought stress, my number one trigger, plus the obvious distraction kept me from regaining the focus necessary to achieve that intense concentration and relaxed state it took to keep control to fight the seizure as it came again. Within 10-15 minutes of his short 20 minute visit, I had a tonic clonic seizure. This however was exactly what the doctors were waiting for. Two days later I was discharged from the hospital, back on my meds.
With that experience I established/discovered new levels control that continue to help me to this day.
- My father recognized my control of my medical condition & treatment.
- I found it could be possible for me to control my seizures
Two major successes!
Almost twentyfive years have passed, and what used to depended upon first consciously recognizing the simple partial seizure (aura), then doing what I do using a combination of mental relaxation and concentration techniques to prevent generalization into a tonic clonic seizure, now has evolved to the point where I no longer need to consciously concentrate on fighting the seizure (relaxation & concentration) anymore. Only the conscious recognition of the aura is needed. Once conscious recognition of the aura has occurred, the rest is now second nature.
If my theories hold water, new pathways are being built, possibly by both a learned response, and a response to the repeated impulses caused by the simple partial seizure, and my “fight”.
I am now at the point where I am very interested in pursuing this as far as I can take it. I am extremely curious about exactly what is (has been) going on neurologically here. I have been seizure free for over a year, and am at the lowest level of medication I have been in my life.
My goal someday is to be off all medication and to control my seizures myself.