Monday, July 25, 2016

11 years ago today was my 1st Cluster Headache,15,000+ more since then.....

July 25, 2005 was a day Id soon never forget. It was my first attack.

I had no idea what the hell was happening to me or why nor did I have any clue on how to make it stop. I was under an immense amount of personal stress at the time.

I have blogged about my first attack and the attacks since then. But why celebrate the 11th year or even acknowledge something that has made me want to die? Why acknowledge the most brutal pain a human being can endure without it killing us? Why re live inhumane pain ? Because I survived.

And if you are a cluster head, and read this far you have survived. You are alive and made it.

Things that did not survive because of cluster headaches:

1. A marriage
2. My career
3. My health
4. My well being
5. My hopes and dreams of retiring comfortably
6. my closest friends

Yeah, that list is pretty crazy huh? Some pretty important things that people aspire to have in life? Most people go to school in this part of the world. Get a trade/degree/diploma and go to work and do something they love. They save for their home, have a few hobbies, make life long friends, plan for their kids future and their own retirement.And pray to god that you don't get sick.

I got sick at 33. Not a low number for cluster heads but a young age to get sick with an incurable disease. If I only knew then what I know now. I certainly wouldn't have tried to kill myself by working. If I was properly educated on the disease when I was told I was sick. If I had taken long term disability from day 1 I could have saved a ton of grief over the future years. If I could have known what douche bag coward friends I had. I could have told them in advance to beat it. If I would have planned ahead financially better? No doubt it. Most people with their savings couldn't afford to get sick at 33 and never work again, Most I said. If I could have known in advance who would stick around in my life and who would put their tail between their legs and walk away.

No one knows this crap. NO ONE. Some who are sick get extremely lucky and have enough money to live comfortably. Some of their relationships stayed and so forth. Its rare but does happen.

I don't think in a million years if you would have asked me if I would ever undergo my head being drilled into awake that it could possible happen to me.

So, i been sick 11 years now. Not very long for some. I know CHrs who been sick 30 years and some just diagnosed. There is NO AWARD, NO PRIZE,NO TROPHY for the most amount of attacks. If you have had 1 attack, and lived. You are a survivor. I hate it when I head that I have it worse. It really truly bothers me when people say " Well I don't have it as bad as you". It really annoys me to hear that because I am no better than anyone. Please don't say how bad I have it. We are all in this together ! We are all one survivors globally. No better no worse.

My day to day life involves more problems for me as a result of surgery.
1. PTSD. I relive the surgery in my head awake all the time. Not cool, not fun.
2. My head has never been the same since surgery. I have never felt the same. I feel lousy almost everyday. My headaches of lately leave me bed ridden for sometimes days at a time. I have had vertigo as well. Related? Maybe, thank god its gone.
3. I have super sensitive head where wires are in back of my head. Even laying on a pillow hurts in certain spots. The pacemaker floats around in my chest, Burning pain sometimes under it.
4. I didn't feel my head for almost a complete year.
5. Constant nausea.
6. Extreme short term memory loss but that's a debate whether surgery or CH did that, I think a bit of both.

In no way shape or form am I complaining about the surgeon. I knew the ramifications, I agreed to have surgery. I almost died from an infection. I am not blaming health care. In fact I am grateful for it.These are just a small handful of things I deal with day to day.

People ask me if I could go back in time and not have surgery and just take psilocyban, I still think I would have surgery because I did it for the greater good of all cluster heads world wide. I truly believe it would have worked but it didn't. I did it for all of us with the hopes it could have  given others hope to do it.

Would I have surgery again? NO. Unless I am in a car accident and have no say and they are trying to save my life. But voluntary surgery again. Never say never but as of now. Not a chance. I also get asked all the time if people should have surgery. I am sorry I can't answer that. I only share my story and people can make up their own mind.

Its been a helluva ride so far. 11 years of this shit. Its nothing to celebrate other than I am alive and made it this far. I have my cluster community of family to support one another which is great. My wife who is my biggest cheer-leading section. Friends who actually give a shit for my well being. They don't care how poor I am or that I cancel, break plans, leave early because they know when I am having a good day or bad, they know and love me anyway.

Not a celebrating of 11 years of this horror this disease has put me through. But I survived 11 years today and that is something to be acknowledged to me. I am alive and love life. I didn't get a choice to be sick, but I have a choice how to live sick.


  1. Wow. What a story you have. And you tell it really well. I probably would have said, "Well, I don't have it as bad as you," if you didn't expressly tell me not to. So I won't say that. But what I will say is that you are a brave man, sir. And I applaud your efforts. Keep on keeping on!

  2. What was the goal of the surgery? I know many cluster sufferers and haven't heard of surgery for them except Bob Wold who almost had it but had the alternative. I have had CH for something like 60 years - with some breaks - from my 20's and I just turned 80 and had 5 hits in the last 24 hours. Sorry the surgery didn't work for you.