Thursday, May 9, 2013

Double Ewe Tee Eff

I am tired of venting on Facebook and I'm sure my husband is tired of my venting to him. After all how many ways can you say "I have a headache" before people start to roll their eyes and mutter "STFU" under their breath...or worse, HIDE YOUR UPDATES FROM THEIR STREAM!

My god, if they hide my updates they will not see my pictures of my dogs, and random photos of my food or see how many miles I run a week. How will they survive without knowing Every Moment of My Life. As my friend Jen used to say, it's Tory 101 and it's a required course.

So back up. I have a headache. Why is this worth blogging about? Because it is May 9. (Whoa, birthday of a junior high boyfriend...why is that random piece of info taking up brain real estate?) I have now had a headache for a grand total of 467 days. That means I am officially suffering from chronic pain known as Chronic Daily Headaches.

"Big deal" you might say. "Everyone gets a headache every now and again." Yes, they do. I didn't. I rarely EVER had headaches until January 28, 2012. If you happened upon this by accident you don't know me, so let me share a little background.

I am a wife, teacher, dog-mom, personal trainer, weight loss coach, and running coach. I teach high school IT classes to kids who are ready to start preparing for a career in IT in high school. In 2002 I lost and have kept lost, 100 pounds. I am extremely active; I run marathons for fun. I went from couch potato to adult-onset-athlete. As of today I've run 76 marathons or ultra marathons (26.2 is a marathon and my longest ultra was 50 miles). I bike, I kayak, I do the odd triathlon every now and again. I eat pretty healthy most of the time. So there is no reason whatsoever that I would have a brain hemorrhage.

Nevertheless...I did. On January 28, I had held my first marathon training class of the season. We ran an easy four miles and before that ran about two with my new 5k class. It wasn't hard and I didn't overdo it. Roy and I decided to go see The Descendents. We were standing in the lobby, a friend had come up to me and asked me a question. I turned to follow Roy into the movies when I felt and heard something that was not right. It felt like someone had hit me in the back of the head with a board. The pain was sudden, excruciating, and completely out of the blue. I grabbed my head and said "Oh my God! My head! Roy my head hurts!!" He looked puzzled and asked if I was okay so I took inventory. I was still standing, it was "just a headache" and even though I felt nauseous it didn't seem like anything truly bad was happening. I said "I think so" and followed him into the movies. It was dark so we sat in our regular spot (third row center). As soon as the movie previews started, I thought that someone was throwing lightning bolts into my head through my eyes. I doubled over not sure if I was going to throw up, pass out, or both. I tried to say "I think I need to go to the ER" and it wouldn't seem to come out. Roy said "Do you think we should go home" and again I did inventory and sure I was overreacting, I said "No. It's just a headache." So we stayed for the movie.

I'll wait while you say "You idiot! You could have DIED!" a few times. No go ahead. I can wait.

Feel better? Me too. I was an idiot. Long story short, I finally posted later on FB that I had the "worst headache of my life". I got a lot of help from migraine sufferers (coffee, Excedrin) but when people who work in the health industry started telling me to go to the hospital (as I was squinting trying to read without letting too much light into my eyes), I thought it might be a good time to take heed of those and the multiple text messages from my friend, Amy, that said "Get the hell to the hospital!!!"

Three weeks later I got out. I had no clue how much this was going to impact my life. I was in a lot of denial in the hospital, attributing the pain and odd sensations to the medications I was on. I had excellent (and expensive) care but I literally thought I would get out on Thursday and return to work the following Tuesday (after a 3 day weekend).

Fast forward 467 days and I still have a headache. After two months post-release my neurosurgeon, with no clue as to why I still had headaches, passed me on to a neurologist. He has tried a number of medications and every once in awhile I'd think something was working, only to fall right back into daily headaches with 3-4 bad ones a week. (I had about 4 weeks of lighter headaches and only 1 bad one per week in the summer of last year when we had very stable weather.)

Chronic pain is defeating. It changes who you are and how you feel towards life. Praise the Lord almighty I am NOT suffering from depression because I truly can understand how someone could get so low that they would take their own lives after this much chronic pain. If it weren't for the fact that I do have good days, I would go insane. There is no two ways about it. In that I am exceptionally blessed! But it just gets OLD when your days revolve around pain. It makes it hard to make plans. You know that some people don't believe you when you have to cancel. You also know that good days make people think "How can she run on Sunday and then stay home from work on Tuesday because of pain???"  There is a correlation to weather--when it changes I get a headache. Fortunately the weather only changes in the pacific northwest once or twice a day. O_o

Oh, I just realized I didn't share what I had. I had a subarachnoid hemorrhage. Doc says there is no reason to believe I would ever have another one (good news) and that I have no AVMs (more good news) or aneurisms (yay for good news). I probably did NOT die because I was so fit and had a very low resting heart rate. Since I sat down and relaxed almost immediately I had a better outcome than had it happened when I was running or in an excited state. (Yes, SAHs often happen during sex. No such luck here.) I'm glad I didn't die because how embarrassing would it be to have to carry THAT through the hereafter?

"Well what brought you here?"

"My brain exploded before a George Clooney movie while I was holding a Coke Zero. At least I saw the movie!"

Could be worse. Another common time to have an SAH is on the toilet. Then I'd have to just wear a button that said "Do not ask. No really. Do NOT ask."

So there it is in a nutshell. I had a big bad headache. Worst of my life. A headache so bad, it changed my life. A week ago I had 30 Botox injections to try to control the pain, but it hasn't helped yet. I've also tried:

  • Topamax (made food taste like ass, caused me to lose weight (darn), made me tingly. Did not help.)
  • Verapamil (caused me to get dizzy and feel disconnected. Did not help.)
  • Propronolol (caused my already low heart rate to go so low that I had no energy. Did not help.)
  • Amitryptiline (makes me totally tired, has not helped, but I'm still on it.)
  • Botox injections (the jury is still out on this one, so far no love)
So my WTF is not only What the F but Why the F. No, I don't wallow in Why the F all the time, but sometimes I just get pissed. I did everything RIGHT! I eat well, exercise, kept my blood pressure low, stayed active, did not do stupid drugs, alcohol, supplements. There is no reason that this happened and on days like today when I am having another fucking rip snorter of a headache, it's gorgeous out and all I can think is "I can't wait to get home so I can just put on an ice hat and a mask and curl up into darkness.

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