Monday, June 9, 2014

My Diagnosis...my tooth...where it all began

July 25,2005 is a day I will never forget.


I really do not to talk about past relationships. But this blog is not worth writing because why and how. My ex wife and I were going through a really tough time in that period of my life. 99% of the things that were happening to me and us were NOT self inflected and was just occurrences that had happened to us and family and nothing was our fault.

In synopsis to give you an idea what was happening to us...me...in my life was...
.My son had been mauled by a dog and was dealing with therapy, night terrors, trust. As a parent the worst thing is to see your child suffer. Was no picnic.
My ex wife and I had recently lost a child...on my birthday in fact. And the D&C left some scars on her no woman should ever go through...mentally speaking.
My sons grandfather(his moms dad) wasn't doing well and did pass away shortly after we split up(days later).
There was a multitude of things happening...out of our control.
And last... My ex was in a bad car accident. That was my first attack.

As the days went on from July 25,2005.My attacks progressed very quickly and morphed into nightly attacks waking me up. No idea what the hell was happening to me or why.

The pain starts in the trigeminal nerve...right upper gum. So I went like any person would...to the dentist....two root canals and then his recommendation to have the tooth removed.

The tooth was removed about a month and the pain was really bad. I had to stop working on the line when it first happened. Shortly after all this was happening I was on stress leave from work. Because of everything that was happening. Working in a factory stopping the line was out of the question.

I called the dentist and said hey...that pain is worse! Shouldn't the gumb be healed by now? He then refereed me to a fellow at University Hospital. I waited a month or two...can't remember... By this point it was around the 8th or 9th month of these attacks that were daily from July 25,2005.

I went to University Hospital. met with a Dr. I can not remember his name or title. What he as a Dr. in...I walked into his room. This man was old. I don't mean older than me...I mean He looked like he should have retired 30 years ago. Pure white balding hair. I thought great...he has experience. Maybe he call tell me whats wrong with me....

He sat me down in what was like a dentist chair. Asked me about 7 questions. Looked at me. Said " You have Cluster Headaches, my next appointment is here" and pointed to the door.
hmmm. I left scratching my head. No idea what Cluster Headaches were. How to treat,live with or nothing. HE TOLD ME NOTHING. I do not remember exactly what questions he said but it was more along the lines of pain,my eye,runny nose, times of day etc.

So I get home, tell my ex wife oh I have cluster headaches. Oh she says...Both kinda shrugged it off.

So about a month later my attacks got developed so badly that I seriously thought I should be dead or they were going to kill me. Home computers were on the rise. We had gotten one recently and I decided to search"Cluster Headaches"....from the very moment. My life changed FOREVER.

I cried my eyes out what I read. The fact it was incurable and I would die like this...Reading what I read online was like being told I had the most painful disease on the planet...which I do. And that people commit suicide because of it and all I wanted to do was drive to University Hospital and punch the Dr right in the mouth. What a BASTARD. Brushed me off and pushed me out of the office.

What this bastard did was not tell me how my life is forever changed. He never told me that there was possible treatments and medications and so on. He told me NOTHING other than I have CH and his next appointment had arrived. Man I was pissed.

Like anyone who gets diagnosed with anything...you have your 5 stages.... Denial...why me, nope it can't be me. What did I do to deserve this and so on...and eventually it led me to the person I am today but that's a big fast forward.

My marriage quickly dissolved. I am going to take the high road on this one and say nothing about my ex wife.

I then spent the next 3+ years and a human guinea pig for medications, abortive,preventatives. The very first neurologist I had....again Ill take the high road. And say nothing. But I will give you a hint...she said she had migraines too and said I shouldn't complain about CH. I have two words for her. GUESS?

I look back today...and its almost the 9th Birthday of my disease. Over 10,000+ attacks, over 16,000 hours of screaming my head off...Those numbers are very low...by the way....and think wow...I have heard and read some really scary stories of Cluster Heads waiting 20+ years for diagnosis. The fact I started with CH and got diagnosed in less than 1 year is a record...I am also a pushy person and when i want stuff done...There is no such word as can't in my vocabulary...so my pushiness got me diagnosed quickly.

I will write one day about all the crap the funneled into my body and I did touch base about most this in previous blogs. It in the blog about me discussing my decision to have brain surgery.

I am very fortunate to have one incredible neurologist Dr.Paul Cooper. Last time I saw him was before my brain surgeries. I have one incredible neurosurgeon. Dr. Keith Mac Dougal. Great guy and not only his confidence out s you at ease, his personality is sincere.  My own personal GP doesn't really follow my CH and any programming but I do give my GP updates on my headaches. Unfortunately my GP is stuck with dealing with all my side affects from surgery. I am very fortunate. I really have nothing to complain about with my Dr's. I did have to switch and the one Dr who diagnosed me with CH, he lost his bedside manor a very long time ago.

My advice...if you think you have CH. If you think you have anything. See a doctor. DO NOT SELF DIAGNOSE. I hear of that daily on my twitter. Oh I saw a video and now I have CH. Maybe you do, maybe you don't....But please see a doctor for proper diagnosis. Push for it. don't take no as an answer and always get a second opinion.

This just popped in my head this morning knowing I have never discussed my diagnosis. And thought Id share....

Have a pain free day

( this is my tooth...where it all started....I can not afford to have a veneer or have it replaced :(






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