If you have not read my blog before. I recommend scrolling through and educating what a Cluster Headache is first, viewing some videos as this will shed some light on what I and 0.01% of the world survives. You will understand more about me and what you are about to read more than reading this with a blank stare.
July 25th 9 years ago to this very day I had my first cluster headache. Thinking I would die from some sort of tooth ache/brain aneurism I wasn’t sure what was happening to me or why.
Today, is NOT a day to celebrate, rather a reflection and celebration that I am still alive. Yes. This is called the Suicide Headache for a very good reason.
Numerous doctors, neurologist surgeons, specialist have said this to be the worlds most painful disease known to medical science. Dr. Peter Goadsby has said” This is a doodle compared to child birth, gun shots, stab wounds, kidney stones”.
In December of 2008, I was planning my own funeral. TRUTH and FACT. Depressed? Absolutely not. I saw much joy in my life. I enjoyed doing many things. I enjoyed life. I wanted out of the pain. No matter what the cost. Two things prevented me from Suicide. My son and my faith. I asked myself many times what would be better for my son? Having a dad sick? Or living without a dad. There is a huge difference between being depressed and having the worlds most painful disease known to medical science and living with this chronic. Day in Day out. Non stop no remission.
L will never forget my first attack. It was a hot summer day and my family and ex wife were under severe stress. (lost a baby, son was mauled by a dog, and much more) and since I did not drink, do drugs or really vent. My body was telling me time out with my attacks. Fast forward, I was diagnosed in just under a year after 2 root canals and a tooth being pulled (very common in misdiagnosis of CH). It wasn’t until about a month after diagnosis that I goggled “Cluster Headaches” and since that very moment my life changed. As my diagnosis was, “ Mr. T you sir have Cluster Headaches my next appointment is here” as I was forced out of the office as he could have cared or less to explain to me a single thing. I have written about this before so I will fast forward a lot.
After seeing doctor after doctor, my first neurologist ( I prefer to remain nameless) compared her migraines to my cluster headaches. I was a human guinea pig for scripts only to have horrid side affects and was told to quite my whining because she knows what I go through because she has migraines. Hey lady….I have migraines and tension headaches. There is absolutely zero compassion. This is like comparing a gun shot to a common cold….Quickly ditched her and sought after Dr. Paul Cooper. A leading specialist in neurology who has accredited much to his knowledge of Cluster Headaches. My first appointment was the run of the mill yes you have cluster headaches yes there is no cure to my last appointment years later begging for brain surgery as my wife and I cried our eyes out.
Throughout my Cluster Life as a Cluster Head. I have wanted to die many times. Wish I was dead many times and planned my funeral. No, do not be picking up the phone and calling the suicide line for me….I am perfectly mentally fine and have zero desire to die so chillax I am ok…sort of.
I have lost my career, my ability to function most days as a normal human being should. I have lost my ability to do things like most take for granted….SLEEP. I have aged 10+ YEARS EASILY. I have gained 100lbs from side affects brain surgery and quitting smoking almost 3 years ago. I have horrid short term memory loss which gets worse by the day. I feel the pacemaker shift around in my chest, the wires to my brain in my neck tighten up when I am stressed, gotten PTSD from brain surgery. Lost what I thought were my friends(who are cowards), I fear leaving the house most days not because I am afraid to have an attack in public. I am more afraid of what people say or do when I have the attack. And in the past 2 months. I have slept one night through but average less than 2 hours sleep per night. And no I do not nap, Which is a migraine trigger for those of us who have migraines too. My brain and body is “GO” from the time I wake up. I am the least laziest person I know. I have the hardest time sitting still and those thousands of hours I spent sitting down doing nothing irritates the hell out of me because I don not feel productive. There are more days than I care to count that I solely relay on my wife to cook for me or take care of things because I just can not do.
Now, you might be thinking I am all depressed and down because what this disease has taken from me.
It has also given me great clarity and stronger faith and will for much I desire.
I can not tell you have many times I have looked at my wife in shear amazement for all that she has done and is as a person. This woman literally jumps out of bed at REM sleep when she hears my common”Uh Oh” and runs for me with an injection or Aleve or whatever I need. My wife sleep deprivation is as equal to mine. How do you sleep next to a person screaming in bed shaking and breaking headboards, dry wall for up to 3 hours at a time and go to sleep? No one can. My wife is an UNSUNG HERO. She has a choice to leave. She chooses to stay. Everyday I feel like the luckiest guy on the planet.
My son. Bless him. I am dad no matter what. I will always be dad sick or not. If his teachers, friends, and his biological mother only knew what really happens to me every single day of my life. The kid has seen so much with 4 brain surgeries, waking up all hours of the night. Listening to me punch myself in the face, bang my head, scream and never complains and has many health issues of his own. A chronic Migraineur himself. People say I am strong mentally….Nope. My son is the strongest person I have ever met. He may not be the smartest kid academically. He is the funniest kid anyone has met. He is as much of a gear head as I and suffers with Elhers Danlos Syndrome, ADHD. IBS and Chronic Migraines and tension headaches. He will be the last person to complain, The last person to brag about his car and the first one to help anyone.
If any teacher, friend, relative, neighbour is reading this….he deserves far more credit than anyone including myself.
My dogs. Oh boy…I have had many in my lifetime. Bella my lab/Sheppard mix who came into my life with my wife was the most wild unmanageable dog with her own prerogative. I spent 6 months raining her day by day and now….she is the most amazing dog. Loyal to a fault. Not bright and clumsy but wants nothing but to give and get love 24/7.
Buster my rescue. We rescued this little guy days after my brain surgery. We have had him this November 2 years. He has been to the vet more times than I have seen my doctors. Literally saved this little guy from dying within days. Barely 9lbs, flea and worm infested, going blind and deaf, rotten teeth. Homeless 3-6 months. And days from dying. After brain surgery I channelled my recovery into him. You would not recognise this dog from when he was found to today. He is my shadow.
My parents. How do I put this…my own parents have had multiple health issues. Cancer, knee replacements, and a multitude of health issues. Without them…I would be HOMELESS. FACT.
I can not imagine what it would be like to be a parent of a Cluster Head. The shear horror my wife and son see on a daily basis must be so sad. My parents as seniors have their own health issues to contend with and I try not to complain or show them my attacks because they feel so helpless like any parent would. My son has chronic migraines and I totally do anything to comfort him during bad ones. My parents must feel so helpless because my attacks are so violent to watch. I feel bad for them. No human wishes this disease on anyone especially their children. I can not even fathom what my parents must see or feel.
My faith. Touchy subject for some. I respect others beliefs and disbeliefs’ but for me. I am a God Fearing man. I am a man f faith. I sin. A little to much but Id rather be an honest sinner than a lying hypocrite coward. Being a Christian is always a work in progress and to lay blame and fault at me for my actions based on my faith is wrong. God is only one who will judge me. I just do my best to live by a set of guidelines in the bible best I can with what I have. I will always pray and have faith in Christ. I am not afraid to say I am a Christian to anyone even if I am about to be bashed. Difference is I wont bash you for your lack of faith or your faith in your pet rock, spaceship or whatever. My relationship with God is just exactly that. My relationship. Not yours. You do not have to like me for being a Christian but I ask for respect the fact I am. My faith has kept me alive. The bible is pretty clear that if I commit suicide I will go to hell. Since I been living it no need to re visit…LOL. I know people shake their head in disbelief that I pray and thank Jesus for my life. I pray to a god when I am this sick that people do not get it. I am not asking people who have no faith not to get it. I do. My family does. That is what matters to me.
Unfortunately my wife lost her employment recently so the added stress of income, no more medical benefits to cover medicine has been an added factor to my more added attacks. I do not blame my wife for this. Not her fault. Good stress and bad stress can trigger multitude of attacks. Food triggers attacks, Alcohol ( I do not drink) and much more triggers attacks. My wife knows I am her biggest fan. Things will work itself out. Karma has a way of dealing with things no matter the time it takes. Patience and time is something we have ;)
Yes the last 2 months I have been the worst in my 9 years. I have had more KIP 10s daily in 2 months than I have had over the course of months. Did the surgery work? I get asked that a lot. At present. NO. I thought it was for awhile but this is not a simple ON/OFF switch. Unlike DBS for Parkinson’s disease when a person stops tremors and shaking. I have no idea when and where my attacks will be and the severity and length. So it’s a consistent programming and ongoing checks. Its not a simple answer…is it working.
When I looked into brain surgery 6 had it done. When I had mine done I was the 17th in the world. 2nd in Canada. First in my province and city. 2 had died. I almost did from an infection. Do I recommend DBS or any type of treatment? If you watch my videos, read my blog, tweets or see me on FB I will never advocate any type of surgery, drug or treatment. I have always felt your body your decision you see a doctor and discuss. I am no doctor. I will never recommend anything to anyone. Nor do I allow comments on my videos based on personal experience of medicines legal or not.
BECAUSE. I am not a doctor and what works for some may not work for others. I try to be as Switzerland about things as I can. And fellow “Busters” know for a fact. I support them 110%.
I would never tell anyone who is suffering from anything what to do with their own body. I would appreciate the same courtesy in return.
I have been called everything from Hero to Fear Monger to an Idiot for my videos and choices on You Tube. Because I chose brain surgery, because I put myself out there to advocate. Out of the ¼ million+ views maybe 10 people who are either uneducated and ignorant haven’t a clue or he are suffering and in a very dark place inside. I understand that, I hope they find solace like I have to deal with the disease rather than send nasty messages to people. Typical cowards behind keyboards who don’t have the courage to say it o my face. Its ok….I hope they get help and support they need far more than I do.
At present some of my videos are being used in Switzerland, Japan, and France for scientist, researchers, doctors and students for education. I have seen my video spread around the globe for others to be educated and that was my sole intention when I made the first one. Initially it was for 5 or 6 people because they didn’t understand what happens to me and you can not make yourself have an attack….so I made the first video. Now parts of my video are used in others globally trying to educate and advocate. Which is really cool and I am glad I could be apart of it to help. I encourage others to use/see my videos for advocacy. I only have a problem with it if they use it to make money.
I have tried in all forms of social media to create awareness. Twitter, Google+. Facebook, You Tube, this blog. All our vehicles in my family support a decal very large on the rear window. I created this logo myself. It has raised eyebrows and people do ask. Its been great. There is the odd ignorant comment but hey I am not them and don’t have to see their face in the mirror. They do.
Its been uplifting, frustrating at times and I do my very best every day to write, inspire, help or encourage others. I have my down days. Today surprisingly enough I have the mental capacity to write yet normal thinking hurts so I write less but it’s the fellow survivors who read my shit that inspire me to continue on and write more. Not only because they relate because they share.
Sometimes its far easier to show someone else suffering that say hey I suffer. Either people think it’s a ploy for a pity part or people see a complete stranger and think holy crap. I don’t know why it is this way…but it just is. People see completely strangers and think wow that suck. If they see someone they know they think they are just ”faking it, playing it up or….it can not be that bad”. These people who think and say these things are cowards. Wouldn’t last 30 seconds dealing with this vs. the 16,000 HOURS + of my life that has been robbed of me. Yes I have had well over 16,000 hours of this. That number is extremely low. Most likely well over 20,000 hours. Some have it worse than me, some less. It doesn’t matter 1 attack over over 10,000 attacks like me…1 is too many and will make you wish you were dead or dying. Globally cluster heads will give you the exact same answer.
I am chronic and those that are episodic have complete empathy from me simply because they are a walking time bomb….they could get one next week, next month next year…me…I get them everyday of my life.
In order to be considered chronic you must have 365 days with zero remission. I have had these 9 years to this very day with zero remission. Yes I am chronic. And yes it sucks ass. I do not wish this on my worst enemy. No human should endure this. No one.
I consistently thank Jesus for my wife and son. It could be worse. How you say? I could be homeless and hungry with no wife to rub my shoulder, grab me meds. No son to love me. No bed to scream on and sleeping under a bridge with no food, clean water or meds or even a doctor. Despite my life and how traumatic it is…I am very blessed and grateful.
I am grateful for the people in my life. They people that have left my life and the new people who have come into my life. The people who are in my life now are there because they want to be. They do not care I am broke, sick, or have attacks. Could care or less I can not afford to do the things I once had or did. They enjoy my company for me. They know they can count on me for what I can and will do to help others and my ability to help. I am no longer expendable, I am worthy to them. I am grateful. They see value in me as a person as I do them. I have friends who are agnostic, Jehovah’s, Christians‘, Muslims’ and so on. I could care or less what there faith or non faith is. Its how they treat me, my family and others. Their actions. Not their lack of actions. Sometimes lack of actions speaks far more than someone’s actions.
I raise my son to be kind to others and if someone is an asshole coward, their faith or lack of means nothing. It just means they are an asshole. Simple as that. I do not care if anyone is straight. Gay, Bi, Tri, black, white, yellow, green, pink, likes ford, or is skinny, fat(like me), is bald or hairy, short, tall or from other side of the globe. I could care or less. I do my best to be kind to others. (sometimes my attacks get the best of me and I am moody or short-not my intent) and raise my son to love others no matter what. Forgive others for yourself not them and move forward.
So if you read my blogs, tweets or whatever and if I have offended you, that was clearly not my intent. If I have educated you where you share with others, think or ask questions….that is my intent. At no point in any single video, blog, tweet, email or me telling you in person I have ZERO and any desire to seek pity from anyone. My life is as a survivor not a victim. I am an advocate. This is my purpose in life. It was to find out it is to help others and then give that away.
Please do not pity my life. Do not pity any survivor out there. Because we are not victims. We are survivors. Understand what we go through. Empathise. Listen, Learn. Offer a hug. But do not pity us. If you want to help. Share this blog, share my videos. Share with people who do not know. That helps us.
I hope and pray before I write in 9 years from now that a cure has been found .
God help us.
Have a pain free day.
https://www.youtube.com/watch?v=fNouKvGCqIM&list=UUEkQ1ll1GBbxQkVDzoLCCUw
This is a very touching post. You are strong and I am not going to pity on you. You have my support and a hug for sure. Did you go to private health New York? They are pretty good at sorting out the best doctors and surgeons. I also have migraine problem and they help in keeping it controlled.
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