Last week I agreed to what could only be called intentional physical and psychological torture with the specific intent of of driving me into a fit called a “provoked” seizure in the Epilepsy Monitoring Unit (EMU). This included reducing my anti-seizure medication in half, sleep deprivation, and even flashing strobe lights.  And that does not include the 15 minute breathing “exercises” designed to make you hyperventilate several times a day! I checked in on Monday the 18th.  I got out as fast as I could on Friday afternoon.

[Part of why I am being so open about this personal matter is that I can articulate what I am feeling and how it is effecting me, for those that cannot speak for themselves. This week I was in a ward with adults and children, some very young.]

I checked in on Monday and on Thursday I noticed that I was wearing a hospital gown top, when just a moment ago I was wearing one of my Hawaiian Print shirts.  The nurse then started then telling me how nice I was the day before when she was giving me a shave… I had no idea what she was talking about and grabbed my chin… Sure enough, no four-day growth of whiskers.  Soon she was done and I was left to ponder just how much the seizures had affected my memory.

It was not long before my gifted neurologist showed up to assess me and tell me some good news.  I was an excellent subject and had had seven (7) seizures ranging from small focal seizures to full-blown Tonic seizures (Grand Mal).  She told me that she had let the big seizure play out and it lasted about three minutes. That they had recorded enough data that she had discontinuing me from that part of the procedure and restarted my normal medication and regular sleep.  That she could also tell from the brain waves during the seizures, that I had Epilepsy (like 1% of the population). She could also tell the location was the anterior part of my Right Temporal Lobe, “RTL”. That she had discovered that every seizure had originated in the same part of my brain and she could treat that.

This was great news, but very odd to me since this was all news to me.  I only had recollection of about 10 seconds of the start of a single seizure.  My wife Sherri told me that I had recollection of most of them right after, but that those memories faded away quickly.  That I was cognizant and communicative, but that those memories just never set in. Kind of like the movie, “Fifty First Dates.”

The next day my neurologist came in to give me an update.  She told me that despite the restarting of the Keppra [that had stopped the small local area brain seizure activity from spreading to other areas of the brain and causing a generalized Tonic seizure] that I was still having localized seizures in my RTL.  She had added another medication to treat that. She will see how I tolerate the medication and if the benefits last over a long-term. If not, there are further treatments.

Now that the condition and exact location is identified, there is a regular course of treatment.  For me, that is light at the end of the tunnel. But it not without a cost.

The new medication itself is outlandishly expensive, but I am glad to get it.  I will have an odyssey with the insurance company, I am sure.

The greatest cost has come to the one that loves me the most, my wife Sherri.  In our 30+ year relationship we have stood dedicated and faithful to each other, even in the hardest times.  But this last week left damage on her like no other week I can remember in 30 years! Sherri and I have a very solid relationship.  We have been together for 30 years and we have survived many difficulties, including the time I broke her neck in a car accident. A car accident that I was drunk driving!  It was a very serious accident for Sherri that was life threatening, but I did not see it hurt her soul, her spirit, like she was hurt over this last week.

I knew in advance that it would be a most unpleasant process as my doctor is to the point and quite frank.  I did not want Sherri to be there as I knew that it was very likely that I would be unpleasant also. But there is no stopping your spouse from standing next to you in an event like this, no matter how painful.  As she told me later, “For better or for worse, In health and in sickness” was her vow when we married. I never anticipated that it would be so tested. I thank God that I have such a strong and dedicated wife. I don’t know if I could have made it this far without my family’s support.

The excellent staff responded as if they had been down this road many times (they have).   They were happy and chatty at times, but they also could tell when the tension was high in the room and went about their tasks with minimal interactions with Sherri and I.  Later when asked if this was normal they nearly laughed out loud. “It is part of the process” they said.

The process is to stress me into seizures.  It is not a pleasant process. Not for the patient, not for anyone that gives a darn about the patient, and not even for the nurses that I could hear trying to get out of the duty task of administering some of the test, as even they did not like them.

My script was drawn on a whiteboard that was right in front of my bed so that I could see what was going on myself.  The script was simple, but effective: Half of my regular anti-seizure meds: HV & SL; No sleep from 8 pm to 8 am. It took less than 48 hours to completely break me down.  I started my day at 4am on Monday, and by Tuesday evening I have the slightest recollection of the start of the first seizure, and I remember struggling to stay awake around 3 am.  But that is all I remember until the nurse told me that she had shaved me the day before (Wen). I had lost Wednesday from my memory due to seizures.

I have given a taste of how “unpleasant” it was but those are my doctor’s words.  It sucked. It sucked in a major way. Maybe the toughest experience since I work up in the hospital 25 years ago thinking that I had killed my wife in a drunk driving accident.  I think I was clear about the “unpleasantness” of this process. Now let me talk about the wonderful results of this short unpleasantness.

In a matter of days I learned about a disease that has been with me since I was a child.  I learned about how it manifested itself in me. I learned about how it was going to be treated.  In just a few days of unpleasantness. A complete success, for a little unpleasantness. So worth it.

To start with, I have been successfully diagnosed.  Anyone that has, or loves someone with “Focal, awareness impaired” seizures understands that this condition mimics many other disease processes including drug abuse, and is very hard to get accurately diagnosed.  An accurate diagnoses means a real treatment regime rather than trial-and-error treatments.

I have written this for a general audience interested in epilepsy and current testing and treatments, but now I am shifting gears and I am talking to others with  epilepticy.

A diagnoses is literally a light-at-the-end-of-the-tunnel for me, but a much more personal revelation came to light to me this week, an understanding of how seizures have been affecting my life.  Sure, we all know a tonic/clonic, it is obvious. But I was really clueless to how these Focal seizures worked or how they were actually causing me to act. It was only through this process that I began to understand, and that has hit me even harder than the diagnoses…

I knew that focal seizures only affected one part of your brain and depending on where, the effects can be very varied.  Well, I think I am pretty smart, but that is nearly useless from where I am trying to get a grasp on what is happening to me.  But I am in a new place after that slightly unpleasant test. I have learned that many of the personality traits I have can be directly traced to seizure patterns in my RTF.

Most profound, is my memory loss.  Or as I see it, my Flakiness that I did not understand, but took as a character flaw.  A flaw that has plagued me at least as far back as college. I might have been above average intellectually, but I have never been as reliable as I want to be.  I never understood why I was so unreliable, nor have I ever been able to truly change that part of my personality.

It was profound to me to learn this week that I lose chunks of my memory, even though I might be rational and cognizant at the time, I might completely lose that memory if struck by a RTL Focal seizure.  A seizure that is essentially unnoticeable except to a technician looking at the electrical activity in your brain.

Memory loss is just one of my personality traits revealed by this test.  Many personality traits that I thought were just “Cris’” oddness actually correspond to epileptic electrical storms in my RTL.  Only sometimes do these short “Focal” seizures cascade into a full brain seizure that expresses as Tonic/Clonic seizure.

So if you are a candidate for this test, it might be unpleasant, but jump at the opportunity.   It does not work for everyone. I had more seizures than anyone else in the EMU floor this week, and some people had none.  But when it works, it works fabulously. I learned so much, so much that means so much to me.

In hindsight, it is one of the best things I have done.

Cris Alarcon, 6/24/2018