Trying to understand the why….

So now I knew that this was something that I could not ignore. I was stuck with it. But that attitude really stuck in my crawl. I was an Marine. I had been out of active service for over twenty years but as they say, “Once a Marine always a Marine.”
I was determined to find an answer to this problem and overcome it. When we got home I began to read as much as I could about SUNCT but soon found there is little information to be found. Most of what I found was written in doctor speak which is almost as bad as lawyer speak. I became overcome with a sense of futility. No one seemed to have any answers of any sort. I gave up soon after and would not even look at the articles anymore as it all seemed to be a waste of time.
My wife however was determined to find as much information as possible. She would share this information with me and to be honest I no longer cared. I had been cursed for some unknown reason and there seemed to be no way to lift the curse.
The next visit with my doctor scared me even more. After discussing more pain management and how to deal with it, he questioned my mental state. This seemed strange to me so I asked him why this would be of concern to him. He answered by informing me that a large percentage of people that have this curse commit suicide because they can’t live with the pain.
This scared me because it wasn’t even an option I had previously considered. The constant thought that would run through my head was: it was going to be a rough twenty or thirty years. That alone seemed to be a insurmountable amount of time to know that I could/would/have this burden on my shoulder.
I worked in construction. I worked with my boss who also served as a very good friend. I also worked with an aggravating young man that only aggravated me because he was young. I made good money and enjoyed what the three of us did. We installed suspended ceilings. On really big jobs we had two others that would help us but for the most part it was just the three of us. At least I had this to maintain my sense of self worth. That too was about to change.

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What is Sunct?

After suffering from very severe headache for several months. By severe I mean  I thought that either I was having a stroke or an embolism. On top of that I had never been one to have headaches.

So one day I was working with my boss on a job site and I told him about the headaches and of course he started coming up with different causes that could be the trigger. Soon after our conversation the pain in my head exploded. I got down off the scaffold I was working on and immediately fell to the floor. I was holding my head and groaning and my right eye was drooping and leaking tears. My boss immediately thought I was having a stroke. He started asking me questions but I was unable to answer because all I knew was pain and fright. I really believed that I was dying.

My boss being a former policeman immediately took charge of the situation. He checked my grip strength and looked to see if my face was drooping on either side. Knowing that I had been having headaches for the last couple of weeks he decided not to call 911. Instead he stayed with me and talked with me until the pain began to subside. He had also called my wife who was about 30 minutes away. He put me in his truck and started for town to meet my wife. My wife called the VA clinic in our town and they told her to take me to the emergency room at the VA hospital about another hour away.

By the time we met my wife the pain had lessened but my eye was still dropping and I was not making much sense, was exhausted, and still scared. On the trip to the emergency room my wife kept asking me how i was doing, I was able to speak but I was just exhausted.

When we reached he emergency room they took one look at me as my wife described the symptoms and they immediately set me to an exam room and had a doctor waiting. At this time everyone had believed that I had suffered a stroke. What did not make sense was that I seemed to be recovering.

They performed some tests on me and scheduled me for a MRI in a couple of days. During the days waiting for the MRI I had several more episodes. After the MRI was completed they set me up with an appointment to see a neurologist. Again this would be several days later. I still was suffering from one to three episodes a day. I tried to work but when one hit I was incapable of working anymore and to dazed to go back up on a scaffold.  During this time my boss was very understanding and just like me said we would know what was wrong soon and they would fix it.

Finally the day came that I went to see the neurologist. After studying the MRI’s and listening to me describe the location and type and duration of the pain. He asked my wife some questions about how my face looked during the attacks. He informed me that I had SUNCT. He prescribed some anti-seizure medication and said he would see me in two weeks.

There you go. Problem fixed. I googled SUNCT and Yep that seemed to be the problem. I should have read more than the definition.

Two weeks later the doctor increased the amount of medication and prescribed some meds to take during an extreme episode. I said I had hoped that the meds would get rid of this. That is when he informed me that there was no definitive cure only pain management. That what it was rare and no one even knew how it developed.

Thus began my journey. I had no idea till that moment that my life was now changed forever.