Haven't posted on my blog for a few weeks now because I have been extremely busy with my work and my health. I wanted to start off September's first blog post with a raw update about me.
This past week I had a long overdue surgery to have a cyst removed from my neck which wasn't entirely that bad, it just had to be done. I also had a urgent appointment with my neurologist to update him and discuss my progress since I saw him last. Two months back I met up with a neurologist to discuss symptoms I had been experiencing on a more repeated basis.
For over 15 years I had gone undiagnosed by many doctors of having partial seizures of the brain. Until meeting my current neurologist, I had met up with numerous doctors over the years who could run plenty of tests , but, provide absolutely no answers or solutions.
It is extremely hard to really describe what I experience during my "episodes", but, the best way to describe it is déjà vu, definition, "a feeling of having already experienced the present situation".
A strong sensation of déjà vu will rush through my body from head to toe and I will instantly start dripping sweat. Within 10-30 seconds I will go from hot & sweaty to freezing & chills, leaving me in a slight haze wondering what just took place.
After extensive research on the internet I have found lots of people with similar experiences ranging from mild to severe. Some find the experience cool & interesting while others find them overwhelming & scary. I find myself right in the middle and teeter from side to side.
There is no rhyme or reason or pattern that I can really recognize to them. But, over the years I started to write them down and describe each "episode". I would describe them by where and what I was doing at the time of the episode. I also rank the episode on how intense it is. 1 to a 5, 1 being very mild and a 5 being a complete pass out. I've only experienced 3 episodes that have reached the limit of being a 5 in my entire time dealing with this, which is scary to me.
I've had my drivers licence taken away twice for telling doctors my symptoms, which I completely understand. Doctors have been more than willing to cover their behinds in the past and notify the DMV of my symptoms before I even leave their offices. But, they would always leave me with again, no answers or solutions to my problem. Sarcastically speaking, it always left me with a lot of motivation to keep searching for what was wrong with me. Mean while still experiencing episode after episode...
There were times I would go months without having a single episode, then out of nowhere it will just pop up and remind me it's still around and not going away. Sometimes I will just have one in a day and the most on average I have had is 4-5 in a single day.
This past Thursday Michele and I traveled to Winnipeg, Canada and I experienced 20+ in one day. It was beyond overwhelming and extremely emotionally draining I must say. I've always found myself to be an emotional person, but, this I had absolutely no control of. Episode after episode with absolutely no control is not fun and very awkward feeling.
The remainder of the weekend and up until today I haven't had one episode...
Funny thing is.., I have been on anti-seizure medication for the past two months and my doctor now thinks the meds are making things worse. He is now switching me to some other medication to see how it works...
This is a uphill battle for me and I need to stay on course to finding my solution.
My main reason for writing this post is for me to put what I am going through into words. These words are for me, my family & friends to help better understand what I am going through.
Special thanks to my wife Michele, my Mom & Dad and family for their support & love through this whole ongoing process. Also, special thanks to my new neurologist for just being there to listen, it is really refreshing.
For those who would like to read more information on what I am talking about please follow this link: Partial Seizures
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