Thursday, October 6, 2016

The cost of being sick

I won't bore or shock you with actual numbers but if you need to know message me. The amount I live on per year is way beyond below poverty level. Fact. This is a fact that almost all Cluster Heads, really anyone who is sick deals with unless you have some sort of great pension plan or long-term disability from the company you worked for. That isn't the case for me. That isn't the case for many.
It's a sad reality that almost every one of us looses our careers, homes, relationships due to hardships brought on by costs attributed to being sick.

Even being Canadian with one of the best health care systems in the world we pay for prescriptions, parking, doctors notes etc. Unless you have full benefits it still costs us Canadians.

I am not complaining at the health care I have received or that you are getting but everything comes at a price. I know my neighbours downstairs in the states have to deal with insurance companies and such. I can't even grasp the concept of pay or arrange payment before being seen. Or treated any less than a person of financial wealth.

Being sick with a rare disease usually, means expensive drugs. Let me give you some examples.

These examples may vary in your area but are similar to what another sick person has to pay. Imitrex, a sumatriptan medication that I hate. It makes me gravely ill with horrid side effects. At a local chain drug store, it can cost $140 per injectable. When using 10 per month, that can add up. It is sold at a local chain warehouse store requiring membership fees for $108 each. My small independent pharmacist gets me a generic brand which runs about $68 ish.  This is ONE medication !!! Which I could use 10 per month. Do the math. Now let us talk about another effective treatment. Oxygen. After fighting with everyone to finally get it. Once I finally did, the "d" knee high tanks are $25 a fill. Plus buy the cart $80, the valve $80, the mask $80. (prices may vary in your area). And I can suck back 2 tanks easy on 1 attack. Be chronic and have 3-15 attacks per day every day for life. Not to mention the other medications I take for acid reflux and IBSd creams for eczema that I have. Some of those creams are $80 a tube And then comes over the counter medications like migraine/tension headache pills, my arthritis pills. Holy crap are we done yet? My medication list is minuscule to many. I have friends who have far more severe diseases on top of CH that require a ton more medications to keep them alive. We also split medications, taking half a dose to only feel half better but in fear we can't afford the next dose. Plus also add the cost of medically assisted living devices.(wheelchairs, canes, etc).

It costs so much money to be sick. So if you see me outside and my t-shirt is ripped, my shorts have been sewn together 3x,  It is because I can't afford new clothes. I don't eat at fancy restaurants. I can't remember the last time I took my wife for  dinner somewhere nice that didn't have paper towel napkins and plastic plates. My story is all too familiar with people who are sick. Not just CH.

I'd also like to add something important that needs to be said. Most of us worked in our lifetime. Some of us very hard. I worked many years sweating my nards off in 110f factories. I made money and I bought myself nice things for my family and myself. This is why I have what I have. Because I worked for it. NO ONE GAVE ME SHIT. So if you see me driving a nice car(yes I am a car guy). It's because I earned it. I paid for it and don't owe anyone squat.(except my I am not joy riding around all day in my car footloose and fancy-free. Chances are like this summer I have 12 solid good days out of the last 3 months. But they didn't see me laying in bed in pain, did they? or countless emergency visits, Dr's visits, neurosurgeon visits, X-rays, Cat Scans. Nope just assumes since I am at a car show in my hotrod life is just grand.

If you see a sick person enjoying something they acquired. Live and let live. They deserve it way fucking more than you do. They/us are taking advantage of something that you most likely take for granted.Or maybe just maybe they skipped taking the expensive medications for that month, chose the generic ones so they could afford to see a movie or something. Sadly some think being disabled requires a wheel chair.

I spoke with a friend who attended the last conference in Texas and asked why certain people did not go etc. His answer broke my heart. "Because people are losing their homes, jobs and need money for food and medication". It is a sad state of affairs when we that are sick choose medication over food or have no choice to choose one over the other. In some cases some of us are homeless. Some have been very fortunate to be able to keep working or had planned for a rainy day. I got sick at 33. Nobody plans at age 33 for a lifetime of rainy days.

I am sorry, sometimes this blog isn't rose colored petals, lovely stories of me meeting famous people. It's a hard reality of being sick.  If you want to help someone who is sick, it starts with empathy, not pity. The hardest reality that I have faced is that it kills me inside to try to be normal or like I used to be.

Below is a photo of how you start your day and how my day never ends.


Thursday, September 22, 2016

I been nominated for an award. But you are the winner! Share this with me !

So I get this email from Wego Health. Advising me I have been nominated for an award for this blog and my YouTube videos.

Monday, September 19, 2016

PTSD Post Traumatic Stress Disorder

Imagine being on a roller coaster without a lap bar or shoulder harness, spinning upside down, swirled around in circles like a Gravatron at a fair and the floor drops. You want to pass out. You have no control. You feel frozen in time yet want to die or the ride to stop at any cost. You can not control the ride, your emotions, thoughts, feelings and feel 110% helpless. All that happening while replaying what terrified you in the first place and then it plays over in your head over and over and over. Reliving the event every time.

Wednesday, August 24, 2016

Headaches and the ELTA bash.....

You are probably wondering what this blog about a life with headaches and pain has anything to do with my car club that I am a member of. Let me enlighten you.

Saturday, August 20, 2016

GO F*(% Yourself Blog....I take advantage of what you take for granted.

Quite the blunt statement with such profanity.....well there is a reason.

This blog is not written in haste in anyway shape or form but a true reality of survivors lives dealing with the general public.

Friday, August 12, 2016

Celebrities, average Joes, survivors & supporters on Cluster Headaches.Updated !

I have had some great success with awareness and advocacy in the last 11 years of being sick.
And some might ask why tell a celebrity who isn't sick about a disease they never heard of? Its the same reason I tell average Joe's about Cluster Headaches. Except celebrities have the ability to reach a greater audience than I ever could. And I will explain that a a bit further.

Monday, July 11, 2016

Sunday, June 5, 2016

Coping with Cluster Headaches

Coping with Cluster Headaches.....

If you are reading this, and have cluster headaches. You are coping right now.

Saturday, May 28, 2016


Buster, re born Nov 18,2012 and passed May 28,2015. 1 Year ago today.

Why are you reading about a dog that died? What is it in relation to cluster headaches?

Grab a tissue box, it will tug your heart strings.

Sunday, April 24, 2016

Never miss an opportunity

I don't know if its because I am older and I think ahead or what but I never miss an opportunity to help others if I can.

Tuesday, April 5, 2016

I survived 44 Years.

44 years ago my mother. Mein klein muter (German for my little mom) gave birth to a healthy baby boy

Monday, March 14, 2016

CH Readiness KIt

Having a neurological disease is a way of life. Always preparing yourself for home or not home attacks.

Friday, March 4, 2016

Wednesday, February 3, 2016

Dedication to those who help with us.

Those left behind from suicide often leave devastating effects on loved ones. Family members often question why or what they could have done further. Some didn't know. Some didn't see it coming or believe it was that bad.

I have seen what suicide causes.

Tuesday, January 26, 2016

Death, life after.....

This disease is 200x the national suicide rate. I have lost sooooooo many Cluster Heads. And sadly will loose more.

Friday, January 15, 2016

Why me?

Why me? If you have any type of disease, illness, ailment. I can almost bet you have at some point asked yourself, why me?

A question that has been asked since time began....

Saturday, December 26, 2015

Helping the homeless

Before you even remotely think this is about us, it is not. Its about them, the homeless. It doesn't matter why they are there. Just that we help them.

Thursday, December 17, 2015

Suicide-A permanent decision to a temporary problem

Suicide. Ending your life is a permanent decision that is irreversible and over a temporary problem. It ends all chances of being able to help fix whatever the reason is for wanting to die.

Wednesday, December 2, 2015


Loss comes in all forms. I lost my keys, I lost my phone. I lost my to do list. No, those things are mis placed. Not loss. Loss truly comes from feeling of absence. Robin Williams used this line in a movie once and he said it to Matt Damon. "Loss truly only happens when you love someone more than yourself". And that hits the nail on the head.

Wednesday, November 25, 2015

It doesn't matter if you are famous, unknown, rich, poor, male, female, old young......We still need your help

It doesn't matter if you are famous, unknown, rich, poor, male, female, old young......This disease takes no favorites.

In recent news it has come to light a very famous actor and athlete have come out and stated they too have Cluster Headaches.

Thursday, November 5, 2015

"Busting" the Beast-Citizen Science-Our Hero's Bob and Dan.

Before you start reading. Understand what I am writing and showing with these videos, that this is about a disease. For those with this disease, like me, we are very sick. This is not about recreational use of drugs. Because if you remotely think that remove your head from your ass.

Thursday, October 1, 2015

Being a Cluster Head as a dad, son,spouse, friend, and stranger

I often write about the effects that Cluster Headaches has on myself or what it has done to me in my life. What I have not written about is how we are as a Cluster Head by being a parent, child, friend and stranger to others.

First and foremost.

Wednesday, September 16, 2015

Death- Being Remembered

I guess you could say since my mothers passing that death has been on my mind alot lately. People do tend to ponder about life after a loved one has passed.

Thursday, September 10, 2015

Cluster Busters Conference 2015 Chicago USA

As this year approaches for the Cluster Buster Conference in Chicago I URGE you to attend. Beg, borrow and go.

The Cluster Buster conference is

Sunday, August 30, 2015

RIP mom

Aug 26, 2015 my mom. Mein Kleine Mutter has gone home to the lord after a 33 day battle with brain cancer.

My mom was my life and my family and I will miss her immensely and very deeply.
If you met my mom and knew her she instantly became your friend and you would walk away with a full belly. She had spent a large portion of her life as a chef. Mom had served Queen Elizabeth twice in Germany. But served as a wife and mom every chance she could. Mom spent her life being an incredible loving supporting wife to my father of 52 years. A mom to me for 43. A mother in law to my wife for 5 years. And an Oma to my son for 16 and last her shadow,her dog.

From the moment my mom entered University Hospital here in London Ontario, the emergency staff, the 7th floor staff in neurology and the palliative car staff was second to none. Impeccable. They treated me with such dignity and care from telling me my mom was terminal within 12 hours of arrival to taking care of my dad at the same time 3 floors down in General medicine. My dad was brought in with my mom at same time in 2 ambulances. As extremely chaotic as it was my wife and i were cleaning out their apartment, packing, cleaning, selling and bringing their stuff to the hospital, our house for dad to live in, driving from our home to the hospital, back home then their apartment across town. It helped us so much that dad was under the hospital care for 12 days as we could wheel him up in the wheel chair with IV pole to see mom. And eventually a wheel chair and then walker for dad. Having to make arrangements for mom, dad and find a renovator all while trying to visit mom was insane. I can't even explain it.

The erie part of all of this was mom was under the same surgical team as I was. Despite mom being terminal and inoperable we had the same neurosurgeon caring for mom. Mom was in the exact same room and bed that I was in for my brain surgery. It bothered me the most but was comforting at the same time. I can't really explain it.

I sincerely want to thank every single health care worker that came in contact with my mom and dad. Especially Fritz. He had worked with my mom at the Kiwanis Centre. It was moms last job cooking there. She retired after that. My dad had worked with his dad back in the 70s. My mom babysat Fritz when he was a young boy. Having Fritz there was comforting very much. He having lost his parents helped my dad and I cope when we both had a hard time coping. He explained to my wife and I the dying process and it was easier to hear from him since my mom really liked him very much, Thank you Fritz. If you ever read this my family thanks you from the bottom of our hearts. I also want to thank those who are always often missed. The porters, the Voyageur drivers who brought mom and me back and forth every time to the Cancer Clinic, The oncologist, The nurses, PSWs. Everyone, thank you for a thankless job. I really mean it. Many many times I had to leave the room in tears being unable to cope with mom needing help and the hospital staff took care of everything. Thank you. A special thank you to the Nurse Practitioners at UH for helping mom get to palliative.

While all this was happening. Dad being on 4th floor and eventually coming home to live with us and all the medical staff who came to my home to help dad. While all this was happening. My wife and I and dad had to watch the mother, I so dearly love pass away before our very eyes everyday. We did this alone with no help from no one. Everything was done by myself and my wife. Not a single person helped us. But really who could. Only the people who were in my moms life mattered to her and us anyway.

The out pour of support we received from neighbors, from my club brothers, from my fellow Cluster Heads world wide and my in-laws was greatly appreciated. While none of it was physical or decision making, It was comforting to know how much my mom was loved by so many. How much at the end of the day of my head constantly pounding a simple card, email, plate of cookies, or card meant to us.
It also surprised the shit out of me how some said absolutely nothing. Not even sorry for your loss.

The only complaint we had over this was the Ontario Cremation Service who at first said they would take half the payment for the cremation and then changed their mind and demanded full payment only after we signed. Nor when we called to have mom taken from the hospital did the moran on the phone offer a single condolence. DO NOT USE ONTARIO CREMATION SERVICES.

Cancer is a dreaded horrible disease. Why people still smoke after watching this happen just baffles me. Whatever excuses people give is just that. An excuse. Excuses are only good tot he people saying them. If you smoke, quit. No excuses. If I can quit with the worlds most painful disease known to medical science you can too.

Mom was cremated and there will be no funeral, no wake, no gathering. It was moms wishes and dad, my wife and I will honor her wishes. I have the same wishes. Mom said to me if you didn't come see me when I was alive don't bother now I am gone. I feel exact same way. Mom was nor bitter nor upset about that. Mom was 100% at peace with her decisions and life.  She was a fantastic mother to me. Incredible Oma to my son.

I remember so many times of my mom making forts with my son when he was little or taking him bowling, or taking him to get candy. She treated my son so well. Always, and I mean always made sure he had a full belly. pocket full of money and hugs and kisses. She spent time with him every chance she could. I don't even think to this very day my son knows how good he had it, I myself never knew my Oma or Opa.

My wife was so blessed to have her in her life for the 5 years. She was mom to her, My mom truly adored my wife.  They say men marry women like their mom and its true. My family knows I struck a home run with her. My wife is as grieving as all of us for losing her mom too. I can not thank my wife enough for being so grounded, so helpful, so caring, supporting to me throughout all of this when others where completely absent. But my wife and I never have to worry about living life with regret,

My dad. Where do I begin? Dad went from being unaware of where he was from first admitted to hospital for 4 days to loosing his wife and now living with his son and daughter in law in 1 month. After 52 years of marriage, raising a family, travelling the globe with his best friend to now watching her pass. How my dad is keeping it together I am at a loss of words. The only thing I foresee is time. No one ever "gets over it". But we learn to live with it. Dad said in the hospital if its what God wants, Its what will be. We lost mom but heaven gained the best. We in this house are Christians. We beleive in our hearts 100% that mom is in heaven.

I pray Elvis is singing to my mom right now with my dog Buster. Mom is no longer in pain. My mom lived many many years in great pain from knee replacements to bad arthritis to just getting older. She told me she was not affraid to die.

The day before she passed she had completely stopped talking and eating the day before that. Rarely I had any alone time with mom, Because we were always there together,

I had mom alone and said that we would be ok. That I loved her with all my heart and would miss her but we were at peace with her leaving. I begged her for a sign to let me know she was ok. She opened her eyes for a split second and lipped "I love you" to me. Last words she ever spoke.  She gave dad a kiss back on the day of her passing.

I played Amazing Grace by Elvis as we were with mom and read her Psalm 23.

As we said our good bye to mom, I turned around and looked at the door way of her room. Whether you think I was under duress or making this up I know what I saw. My mom was partially poking her head out of the room with a glow around her head like a light from heaven. She waived at me twice and smiled. I know what I saw. I could care or less if a single person believes me. I saw my mom as an angel. I do not need to prove it. I saw it. I don't care if a single person believes me either.

Now we must continue on in life. I only ever wanted one thing from my mom and dad and that was for them to be proud of me. I promised my mom we will be ok. And we will in time, For now the renovations on our home will be finished. Dad will have his private space and we will be there for dad for as long as he needs.

Mom, I will continue to be the best son to dad, the best husband to my wife and dad to your grandson. I will continue to advocate for my fellow Cluster Heads world wide and make you proud and make a difference in this world. I dedicate this all to you momma. We all are going to miss you beyond words. I will see you again in heaven mom and then I wont have any more attacks/headaches.

Until I see you again mom, I love you

Saturday, August 22, 2015


Cancer, yes the "C" word. I have never heard of another person not knowing someone affected by cancer either directly or indirectly.

Cancer is the  mothership of all diseases. It is the disease that is the most funded for research yet takes lives in multitudes every single second around the globe. Yet there is no cure just prevention and care. I am not going to blog today about the possibilities of cancer cure. Because there is so many different types of cancer unlike my disease the only difference is sides of the head unless you are super fucked and get attacks on both sides. But today this blog isn't about Cluster Headaches.

Saturday, July 25, 2015

Today is my 10 year Anniversary of Cluster Suicide Headaches and today being worst day of my life

Wow, 10 years. I been debating to either celebrate this or be sad. 10 years of my life taken from me. Yet I been given something profound in place. Will get to that later.

Saturday, July 11, 2015

Family, Divorce, Lost Relationships, Employment and Cluster Headaches

I been wanting to write this for awhile but wasn't sure how to approach the topic simply because I did not want this blog to appear as a cry for pity or sympathy when in fact its factual statements based on events in my life instead of my own beliefs.

Wednesday, July 1, 2015

What it means to be to be a sick Canadian. Happy Canada Day

Debatable, controversial and proud. Health care in Canada.

To me, as a proud Canadian, I couldn't be happier being a Canadian. A sick Canadian at that.

Tuesday, June 30, 2015

Please support my friend Leigh MacInnis who supports us Cluster Heads ! Donate today !

My friend and actor Leigh MacInnis from the TV show Trailer Park Boys is doing a documentary on with hallucinogenics and spiritual medicines. Why you ask to help donate?

Monday, June 29, 2015

Cluster Heads are the absolute strongest people I know.

I am sure you have heard the slogan or term "Whatever doesn't kill you makes you stronger". Or "God only gives us what we can handle?".

Friday, May 29, 2015

RIP Buster

Last night, was absolutely one of the hardest days of my life. I dug a grave for my dog. Mans best friend. My Buster Boy.

Wednesday, May 27, 2015

If it has wheels and a motor. It turns me on more than my neurostimulator in my brain !

Discussing my life with Cluster Headaches is one thing. Living with them is another. Once in awhile I blog about what hurts me, what makes me happy and what I love besides my family. Sadly this story ends on my disease.

Thursday, April 9, 2015

Cluster Headaches are NOT Cluster Migraines. Migraines are NOT Cluster Headaches

I would much rather prefer to read layman's terms myself, and generally that is how I write. The percentage of physicians and medical staff reading my blog is probably pretty low so I write for the survivors and supporters....

Monday, March 30, 2015

My blog, my thoughts, my feelings, my words.....

I do not always say what I feel, what I am going through, but I think more than I say. And if my silence appears as nothing, it possibly is more than some could handle. Silence is bliss right?

I know more than I speak, listen to more than I say. And I do notice things. Sometimes, I choose to say nothing.

Monday, March 23, 2015

The 5 stages of loss. Which includes loss of health.

I guess its safe to say many people have experienced some sort of loss in their life from death of a loved one family or friend and loss of a job/career. Which is pretty normal wouldn't you think?

What no one prepares us is for

Monday, March 2, 2015

less than 2 Million spent on Cluster Headaches in last 25 years ! Disgusting

Less than 2 Million spent on Cluster Headaches in last 25 years ! Disgusting ! Yet over $ 1.872_BILLION has been spent on MS. In no way shape or form am I demeaning MS yet comparing MS to Suicide Headaches. The similarity is that CH and MS have the same disease rate of .01% of the world. This is my justification for comparison in disease rate only.

Tuesday, February 24, 2015

Wednesday, February 18, 2015

Im glad you are reading this....

It makes me so happy you are reading this....

The most awesome thing about this blog is that I can see who and where is reading this.....

And it motivates me even more.

Stay tuned......

Monday, February 9, 2015

Raising Awareness on CTV news - Segment on Cluster Headaches

I wake up each day smiling, living life to the best of my ability, I at how such a beautiful woman chose me and to live with a loving man that has such horror. How my son was born into this without any choice, yet he  inspires me each day to give back and pay it forward. I realize that despite my cards I am dealt, I am a very blessed man.

My life is a gift from God and I know that what ever I do today is because of him. I love life and I love to help others the best I can.

I know some people are best suited to remain quiet and that is ok, Its in me to speak out for those who lost their fight. Lost their will to life so they did not die in vein. Today, I dedicate this to them......

Click Here for news cast

Saturday, January 17, 2015

Suicide....the taboo subject to talk about.....RIP Scott, Melissa, and so many others.

With great sadness and displeasure I once again receive news of another cluster head taking their own life.
This is becoming a monthly notification for me and others. It is with great sadness, heavy hearts we lost one of our own.

Friday, January 9, 2015


It is only January the 9th and I am astonished what is taking place globally. Seeing cowardly acts upon us. It is frightening. Sad and tragic. The world is changing.

Tuesday, December 23, 2014

Merry Christmas and Happy New Year.

Glad tidings and blessings to all my fellow Cluster Heads, UNSUNG HERO's and family and friends.

Wow, what a year 2014 has been. So many things have happened in the past year. Globally and in my life.

It has been an enlightening year, educational, uplifting and blessed.

Wednesday, December 3, 2014

Paying it forward. Michael J. Fox "Lucky Man" and Cluster Busters for Cluster Suicide Headaches

Paying it forward
Win this book "LuckyMan" by donating  to & help find  cure to 2 both diseases

Tuesday, November 18, 2014

The Voice of an UNSUNG HERO-Survivor's wife.

Today, November 18, 2014 is our 3 year wedding anniversary.  3 years ago I married my best friend. I'll never forget my first date. Jumped on the Harley and headed to Merla Mae Ice Cream. As we sat that getting to know one another I thought wow, I really like her. I kept thinking, should I tell her I am sick? Should I tell her what happens to me even though she won't comprehend it?
I have hid my attacks before dating and when they happened the girl got so freaked out she bailed on me. I have dated other girls and told them I was sick and they bailed on me. But my gut that day said tell her.

So, it went something like this..

Monday, November 17, 2014

Advocating my disease, leaving my footprint for future cluster heads

It takes a long time for any person diagnosed with any disease to accept their fate. To not only stop denying or asking why me but turning it around to 'Why not me?". It took me along time and a good book by Michael J. Fox "Lucky Man" for me to change my outlook and perspective. No longer wanting to die.

Thursday, September 25, 2014

Cluster Busters Conference 2014 Nashville Tennesse

Hey ya'all. Does my southern accent come through in my words? Just kidding. I love the south and every time I can go, I just look forward to it. I love the mountains, the people, the food. Oh god, the food. I ate pulled pork just about every single day there. Can't get enough of it and only recently in the last 2 years we just got a southern restaurant here.....

Its been 1 week now since I first walked into the meet and greet and was in a room where literally not a single person had to speak. Everyone of us could have kept our mouths closed and not said a single word verbally yet had a conversation.

Thursday, September 11, 2014


Wow I bet you were not expecting this from me eh?

Let me first tell you that June July August 2014 was the worst months of my cluster headache career in over 9 years chronic.

Friday, August 15, 2014

Suicide ( part 2) RIP Robin Williams

I can't begin to tell you how deeply affected I am about Robin Williams passing. For many reasons...and really. Its not because I am comedic myself or the fact I loved his work as a comedian or actor. Or for his philanthropy. Its because....

Thursday, July 24, 2014

9 Years Today I have had my first Cluster Headache. Non stop since. I am alive today.

9 Years sick today with Cluster Headaches aka Suicide Headaches. Before you continue to read this. I write this with a sound mind as I can with zero aspirations of any pity. Only awareness. I wrote this on 1 hour sleep. Do not be alarmed. I am getting accustomed to sleeping 2 hours or less per night.

Sunday, June 1, 2014

Meeting another Cluster Head in person for the 1st time

Yesterday My family and I met another Cluster Head and her spouse.
This was the very first time I have met another survivor in person. And her spouse.
She is a survivor in more ways than one.....

Monday, May 19, 2014

It's tough somedays talking to the ignorant

Its tough some days talking to the ignorant. But they are only ignorant until we educate them and then they are just heartless bastards who don't care or did not want to learn or think they have the cure.

Hey, have you ever told someone you have Cluster Headaches? And their immediate response was...

Tuesday, April 15, 2014

I do what I do because it is something far greater than I

The videos on YouTube, the blog, the Facebook page on Cluster Headaches, the Google page, the twitter account keeps me busy. Its because I help. Its because I do all of this for a far greater good than I. Today, I ask your help.

Friday, March 28, 2014

Tuesday, February 25, 2014

Social Media, 2years ago was DBS brain surgery #2 of 4. Life today.

OK. So I have caved into the social media blitz. I personally was not a fan of Facebook simply because reading status on people washing their hair didn't interest me.

So I made a FB page not of me Tom *******, I made one of ClusterHead Survivor. A guy who had 4 brain surgeries and has Cluster Headaches.

Wednesday, January 22, 2014

Praying son does not get Cluster Headaches. as he has chronic migraines and tension headaches

A parents worst fear is that they inherit their diseases and ailments. IN last couple years my son now age 15 has been suffering chronic migraines and tension headaches.

It breaks my heart to see him suffer like this day and night non stop and like any parent with a brain cell wishes no pain upon their children and have asked god many times to take his pain and give it to me.

Wednesday, December 25, 2013

Merry Christmas

Merry Christmas to all.
Today, I and many others celebrate the birth of Jesus. For some others its just a time to get together with family and inadvertently celebrate Christmas. Either way I wish everyone a Merry Christmas.

I look back in review of the last year I and my family has had.

Thursday, December 12, 2013

RIP Jayden

Ya know the last 4 days have been F'ing hell for me. I have had 4 nights of 2 am Kip 10 attacks. Battling migraines everyday and have clusters at the same time during the daytime as well. WTF???
But yesterday at 2am during my attack only a block from my house, a stolen truck with a 14 yr old kid driving, wrapped a truck around the tree and passed away. He was my sons friend.

Tuesday, December 10, 2013

Please Do Not Drink and Drive

I don't care its the holiday season and the house, work and social parties are among us.
If you drink, do not drive. Period. And please forward this video link to anyone prior to going out for the night. Its all I ask. Not Cluster headache related but please do not drink and drive.
RIP, James, Mike, Scotty and Jim.
Merry Christmas everyone

Friday, November 29, 2013

Stop Hunger- Feed the homeless-You can help

Despite being sick and not living sick I do look around me and know what the hell is happening  in our community.

Tuesday, November 19, 2013

Update on new DBS programming-side affects,life in general

Its been a little while since I last wrote. Partially because I been dealing with some things that not only had me concerned yet scared because I had no idea why they were happening and I can not stop them.

In September it had

Wednesday, October 16, 2013

Sucide is NOT the answer

I am not a doctor. I will never recommend any drugs for anyone to take. I am a survivor. I only give a survivors point of view and share my experiences. There is professional help out there. No matter where you live.

Thursday, October 10, 2013

Forgive them as they do not know,praise the ones who ask

Jesus once said that...but todays blog isn't about biblicle scripture. Its about me and forgiving those who do not know. Do not understand and praising those who do take the time to listen, enquire and understand.

Just yesterday again I was judged parking in handicap parking spot.

Tuesday, September 24, 2013

Update on health, EMS ride, and fun times, NOT

I'm just letting some know....I'm really struggling lately. Struggling with allot of things due to

Monday, September 2, 2013


Its seems to me that after 203,000 views on my YouTube video and countless efforts to get people to read parts of my blog in explanation of my choice not to do drugs its not evident enough. So this is why today....I am going to spell it out for some and help others understand my decision not to use drugs.

Lets start at the beginning.

Tuesday, July 23, 2013

Personal Update

Hello. I have not written in awhile. Its summer time and since I loathe any cold weather I do my absolute best to be outside as much as possible. I love 1 season...summer and hot.

Sunday, July 7, 2013

Non Cluster Headache people...listen up

G'day. This post is not intended for families of survivors or themselves. It is directed at friends, colleagues, associates, co-workers, employers, neighbours, basically anyone that comes into contact with a "Cluster Head"  in their lifetime.

Sunday, June 23, 2013

Dr.Sanjay Gupta on CNN are you listening ?

Dear Dr. Sanjay Gupta:

I am a chronic Cluster Headache Survivor with 4 brain surgeries under my belt. Yes, this is my feeble attempt at having hopes of being interviewed on CNN by you to discuss awareness for CH and perhaps my DBS surgeries I have had.

I have written CNN, Your office and to my dismay never heard back.

I am now relying on all my friends, family, blog readers and my YouTube Page supporters to reach you to get on TV and be interviewed.

As you know this is one deadly disease. Nicknamed the suicide headache and for obvious reasons.

There is no cure, many of us undiagnosed, many of us living without proper medical treatment.

I have a YouTube page with well over 300,000 hits, just started my blog in December 2012 and almost 50,000 hits. I need millions of hits to spread awareness.

I lost my vanity along time ago. I have been contacted about suicide twice prior to the act. There is a reason Dr.Peter Goadsby has coined this term "The Worlds Most Painful Disease known to Medical Science".  There is not other form of pain any worse.
The sooner awareness is spread, the sooner people can get the help they need.

Not a single Cluster Head would ever dream of asking for pity. Yet we seek understanding as even our own family members have no idea the pain we endure. Its torture,inhuman,unjust and severe.

I and others have lost friends, relationships, jobs and even taken their lives over this.

We do not seek attention yet so many sufferers "cash out" where as with help from advocacy, awareness, and certain treatments, some of us want to live and fight "The Beast" and not give up.

I use the term 'Survivors" vs "Sufferers" because that's what we are....surviving.

Please interview me.I am officially "disabled" in Canada. And dedicating my life now to spreading awarness, helping others cope, being positive, supportive and offering hope.

Please Dr.Sanjay Gupta, help us.


I am now asking every single person that reads this blog, watches my YouTube videos, to Tweet, email, hand mail Dr.Sanjay Gupta and or CNN. Any help is appreciated. I can no longer do this alone. PLEASE HELP

Sunday, June 16, 2013

Happy Fathers Day

A very special Happy Fathers Day to my dad and all dads out there.

What a great day to reflect on being a dad and giving thanks to your dad.

Wednesday, May 22, 2013

Very Proud "Dad Moment"

Some say dedicated, wife might say relentless, I say because I love my son and for anyone that knows me personally, knows how much I live for him.

As some of you know, we are what you might call "Gear Heads", "Car Guys", whatever lingo you choose, if it has engine and wheels, we are into it.

A Canadian newspaper/ magazine is published twice monthly and they featured a 3/4 page story on my son. I couldn't be any more proud. I do hope the pics are large enough to read the story.

Sunday, May 19, 2013

The Michael J. Fox Show , my hero does it again

This made me smile today and hopefully you as well. I have written about Mike Fox and his career and being a die hard Back To The Future Fan as well as Family Ties, Spin City and the rest of his movies I am a huge fan of his acting career. He became my hero when he started the foundation.
I advise to give generously to

Although I do not have PD, I have CH and

Tuesday, May 14, 2013

Restoring Faith in Humanity

My sons cousin was murdered last February and sentencing was last week. It brought up such emotion again for my family and and obviously theirs.

I will never understand the need for

Thursday, April 25, 2013

Update on Buster my rescue dog

I wrote below about our rescue dog "Buster" Which became family in November 2012. He ended up on our lawn, homeless, hungry,sick,bony,smelly and scared. But friendly.

I truly believe he ended up on our lawn to rescue me, not me rescue him. Since then he has become and extension of our family. He has been so incredibly therapeutic for my healing and journey and at the time after brain surgery #4 I really needed to concentrate, and focus on positive and taking care of this sick animal was all I could do.

Friday, April 19, 2013

Diagnosis of ongoing Short Term Memory Loss

Today I had my diagnosis or synopsis of my appointment with two neuropsychiatrists. They sat me down (my son accompanied me) and explained the test results.

Thursday, April 11, 2013

Reprogramming DBS Update on Cluster Headache - I am IRON MAN

I had an appointment with my neurosurgeon Monday. I shown him my headache log since our last visit. Verbatim " Tom, Your brain is

Tuesday, April 2, 2013

French Documentary on Cluster Headaches

Some kind member on Cluster Busters seen this video and saw me in the video and sent me the link. (no i don't bust)

About a year ago I was

Thursday, March 21, 2013


Today, despite how I feel. I deeply feel gratitude.
Today I am grateful for

Tuesday, March 19, 2013

Neurology Psychological Testing- My Memory Loss

This Friday March 22, 2013 I am going to have whats called "Neurology Psychological Testing" done because of my ongoing and declining short term memory loss.

Tuesday, March 12, 2013

Updated Scar photos from DBS operation

Waaaaay down below in my blog.If you scroll to the bottom you will see photos from my surgery at the hospital. MRI, etc.
And today I would like to share my scars today. Months later after my hair has grown back and staples long gone, bones have healed. Here is how I am today.

Monday, March 11, 2013

Cluster Headaches, Migraines, Tension Headaches

Yes I get all three. All 3 being very distinctively different in location and pain and side affects.
My cluster headaches are

Saturday, March 9, 2013

What gets me through nights like last night...

As I type with one eye open. Its not because of an attack I am having, its because of all the attacks I have had as of recently. I am to say the least. Exhausted. Wiped out. I don't understand it. I am not overly stressed out. Perhaps its the programming in the neurostimulator? Hard to say. But whatever it is I am not having fun.

What gets me through things is

Tuesday, March 5, 2013

How I start my day...or end it.....

Unless you have CH. I shouldn't expect you to understand.
This is how I start my day, or finish middle of the night. Start/ finish. Don't matter.
I can't smile everyday

Monday, March 4, 2013

DBS Deep Brain Stimulation update

I write down every attack and log them for my neurosurgeon to review so each appointment he has a log for reprogramming the neurostimulator. My next appointment is in April. Which is about 3 months of present programming.

Throughout my almost 8 year stint of Cluster Headaches and benig chronic I have never had any consistency of headaches in time of day. They have always been sporadic. As of lately most of my bad attacks are occurring between 11:30am and 1 am. Which for me is weird.

This past few weeks I been

Wednesday, February 27, 2013


I am starting to loose my wits. I generally really keep it together. But I am frustrated in many ways.

For fellow sufferers...." How many times have your heard?"...

Sunday, February 24, 2013

taking a ME day and its ok

There have been many days I have tried desperately to be as normal as anyone who isn't sick. Hiding the disease best I could. The older I got the harder it became to hide what I am or became.
I wrote about this already. Accepting. Alot of these blogs intertwin.

You or other might say...." A day off???" for someone who is on a disability pension that sits home? Yes I take a day to me sometimes. Lately more than normal. Its ok. It is ok to do jack squat. I think it was harder for me to accept a Me Day than anything. My whole life I never been lazy. I am a very hyper person who would rather be outside working or doing something than sitting doing nothing. I say to my wife all the time...
Sleeping is for when your dead.....and she laughs. I dont like sleeping. I dont like sitting around doing nothing. I like waking up early and getting the most of my day.

Tuesday, February 19, 2013

Fatigue, dispair, exhaustion after cluster headache

Last night was no different than thousands of nights I have had in last 7+ years. Wow hard to believe this summer is number 8. Anyway, I am wiped, worn out, fatigued, and tired today.

So if days like today.

Sunday, February 17, 2013

Video documentary on Cluster Headaches, not me

I often wonder why some think we are not sick. That some look at us like we are "faking it" or perhaps making it sound much worse than it really is. Or seeking pity or attention. All FALSE.

There is no greater pain on the planet known to medical science know to mankind than "Cluster Headaches".

Friday, February 15, 2013

My childhood memories

Everyone has childhood memories. Most of us treasure them more than anything. For me my memories that are dear to me are

Thursday, February 14, 2013

Happy Valentines Day

Happy Valentines Day to all of you and make sure you tell your loved one not just today how much you appreciate, adore and respect your spouse.

Monday, February 11, 2013

Michael J. Fox my hero

I know I talk alot about Michael J. Fox and him being my hero. Aside from my wife and son being my hero's as well. But its different. Mike is a philanthropic hero. For someone wanting to go out of business I admire his ongoing relentless will , drive and desire to fight.
His actual real name is

Friday, February 8, 2013


Humility is a word I came to know in between my first attack July 25,2005 and sometime in between now.
Humility to me is not only acknowledging

Tuesday, February 5, 2013

Thank you to my Cluster Headaache Followers

Thank you to my cluster headache followers.

I started this blog int he middle of December of 2012 and its just the very beginning of February 2013 and almost 1500 hits so far. I have had over 102,000 You Tube views on my videos. Over 76,000 on my one video alone. I know by today's standards with video hits going viral overnight of a million hits but I am very proud of this. For a disease that affects 0.01% of the worlds population. And I live in a city of over 350,000 and there is only 2 other survivors I know of, its a very very rare disease.

And to have this recognition by loyal viewers is just incredible. When I made my

Sunday, February 3, 2013

Children and Cluster Headaches

I don't even want to fathom a child with cluster headaches. But sadly some survive them. And if there is one thing that I loathe is to see a child suffer. God be with them.

This blog today is about our children and cluster headaches. While I can not write about myself being a child having cluster headaches although I am a kid at heart. I am writing today about our kids who watch us with cluster headaches.

Sunday, January 27, 2013


Today's blog is dedicated to all the spouses, children and family members that deal with Cluster Headaches in your family. If your husband,wife,child,brother,sister,aunt,uncle,grandparent cousin etc has these.....than you know what my wife and son deal with.

I want to thank my

Friday, January 25, 2013

WTF is wrong with people??? Cowards

I was really hesitant on writing this blog for quite sometime but it needs to be said because really I am at a loss for words other than some people are sicker than me and need help.

Monday, January 21, 2013

Inhumane pain-explaining Cluster Headaches to non sufferer

Cluster Headaches aka Suicide Headaches, formerly Horton's Neuralgia.

How does one with Cluster Headaches explain to a non Cluster Headache person?

To be perfectly honest there are many I have heard over the years. From Suicide Headache, Ice Cream headache, Ice pic headache and more

It has been described as 30x more painful than child birth. Described as worse than being burned alive. Similar to being shot point blank and living.

Thursday, January 17, 2013

Judging Handicap Parking

I wrote this article in my local newspaper last month. Thought I would share as some can relate. This is an exact cut and paste as to what I wrote.

"Not all disabilities are visible.

Wednesday, January 16, 2013

Putting our own illness aside for others

Sometimes we should put our own illness aside for others whom are sick as well. It really does ground you. If that person has Cluster Headaches or another illness/disease/ailment or is just feeling down. We should if able to be there in support for that other person. It will ground you. And make them smile.

There is nothing more in this world that turns my stomach more than seeing

Monday, January 14, 2013

Million Hits- I need your help

With my recent post on RIP, and the grief that not only I carry but others whom have lost a loved one due to suicide from Cluster Headaches. It has brought me to today's post.

I have written to CBC, Fifth Estate, CNN, 20/20, and many more. This disease needs awareness. I have seen |Dr.Sanjay Gupta do interviews and reports on DBS. But not on DBS with or just Cluster Headaches.

I been on a mission to

Thursday, January 10, 2013


I received this on my YouTube video account today,
"my friend sufferd from these and he said he would rather be stabbed or have his arm broken then to suffer from one for an hour , he commited suicide last month leaving a personal note to me claiming he cant deal with the pain , i feel for everyone with this illness"

Ill be honest. I cried. I cried as I felt  like we lost a family member.

Saturday, January 5, 2013

Determnation, preserverence,drive,and desire-how to live sick

If you have Cluster Headaches, ALS,Parkinson's,Cancer,Diabetes, or any other life altering illness, disease or sickness that you are like me. Yes it sucks big time we are sick and Doctors will tell you that you are sick but no Doctor tells you how to live sick. This is where this blog may help.

If you were recently diagnosed with some illness or Cluster Headaches like me. I highly recommend

Wednesday, January 2, 2013

New Years Resolution

Happy New Years fellow CH Survivors, friends and family.

I pray for all of you for health and happiness. That maybe this year a cure be found. That all though I had Deep Brain Stimulation Brain Surgery and whether it works or not a cure be found. DBS nor illicit drug use is NOT a cure.  If anything, its a band aid.

This year my goal is to loose weight. I had written earlier and about smoking and weight and I to this very day and pray forever I remain smoke free.

Friday, December 28, 2012

Buster- my rescue dog.

About a month a stray dog wounded up on my lawn. My guess was a Shi Poo mix. Maybe miniature poodle. Poor little guy was skin and bones,starving,hair was matted. No collar, hair was about 6 months long of no haircut. He is friendly, and very hungry. We fed him with our dog food. I was unable to drive due to surgery but a friend of mine was over with her husband and they took him to animal control. He had been on my mind all that week thinking how could anyone not post pics, around neighbourhood, kijiji,London Free Press and leave this little guy out. I called Animal Control , they gave him shots, said he as neutered and about 9 years old.
Said chances of adoption were slim because he is a filthy stray and older.
I couldn't bear him being Euthanized.

Wednesday, December 26, 2012

Cluster Headache Videos

Hello and Good day fellow Cluster Heads, friends and families.

I wanted to post some videos on Cluster Headaches for reference for fellow survivors and people wanting to gain some information on the disease and also what us survivors endure daily if your chronic like me or episodic.

Here is is my YouTube channel "ClusterHeadSurvivor"-Please follow my channel. Add me as a friend and or message me

Now here is a collection of videos from YouTube.

Tuesday, December 25, 2012

Drive Sober

You have al heard the slogans "Arrive, Alive, Drive sober" and there is many more but why do people continually drink and drive? It will never cease to amaze me the shear stupidity in people drinking and driving.

Sunday, December 23, 2012

Merry Christmas

Merry Christmas

To my family, friends,fellow cluster heads and anyone else reading this.
This time in the past for me traditionally has been horrible for me but each year I try to be positive, and not repeat history. This is my first Christmas with our rescue dog Buster.
Its an important time of year for us to celebrate the birth of Jesus while enjoying festivities of family time, exchanging gifts, as for me its better to give than receive. I have always been that way.
I love the food, festivities, lights, tree, Elvis music and church.
There is something so humbling and serene sitting in church singing Silent Night. I feel so at peace.

Saturday, December 22, 2012

My decision and journey with brain surgery-DBS and ONS

As mentioned before I started these attacks July 25,2005. They have been relentless everyday non stop since then. Yes I am 100% Chronic. Even more rare because of migraines and tension headaches. All uniquely different. Pain is no comparison. Anyone with CH will attest to that and concur.

Friday, December 21, 2012

Bitterness and Resentment

Bitterness and Resentment.

These are 2 character defects I have and try to work on daily.
Holding onto this can cause an unhealthy life if you take it to the extreme. My wife reminds me and encourages me to"let go" or "move forward"
Whether your bitterness and resentment is because of....

Thursday, December 20, 2012


Faith for me has been a blessing. No pun intended. I became a Christian about 7 years ago. I should remember the date when I became born again but I don't. I do not go to church every Sunday because of my health etc but thay has not steered me away from my relationship with God.
Faith for me has definitely helped in many ways

Wednesday, December 19, 2012

Adjusting Pacemaker/ Neurostimulator.

Today I see my neurosurgeon to adjust my nuerostimulator. In time I hope things will be better for me and I hope after today's adjustment that iam not so dizzy and nautious. I must try to remain positive and pray.

Tuesday, December 18, 2012

Helping Others

While having Cluster Headaches can be trying,debilitating and exhausting we should never stop the humanity in any of us despite our ailments to help others.

Monday, December 17, 2012

Smoking and Weight

Aug 22,2011 my wife and I quit smoking. I had smoked 2 packs a day for last 10years and had smoked since age 16.

Sunday, December 16, 2012

Cars to Stars

Its quite a journey we been on so far.
I have been fortunate enough to have met many famous automotive icons.
George Barris-(famous for Batmobile), Chip Foose, Tim Allen , Jay Leno and many more.
I also met some famous movie stars who played parts in car movies like American Graffiti
I have also had the pleasure on working in the Steve Plunkett collection.
Worlds largest and rarest Cadillac Collection on the planet. He is a mentor and a friend. I can not say enough nice things about him. I also was able to see one of my hero's Michael J Fox speak in person.

Elvis Presley

At age 4, I remember my first Elvis record. I still have it to this very day.
I remember at age 5, Aug 16,1977. I remember seeing it on TV and going outside to my folks sitting on the patio and telling them that hot summer day. They were in disbelief.

Surgeries 1 through 4

It took a long time to get where I am today. I waited long for appointments and finally got in touch with a great neurologist whom got me in touch with my neurosurgeon.
Aug 23,2011. The day I quit smoking after 25 years. Was also my 1st brain surgery called " Occipital Nerve Stimulation". I was knocked out for this one. The surgeon implanted two electrodes in the back of my head to an external pacemaker. If it worked they would install the pacemaker in my chest. It did not.

Feb 23,2012. Deep Brain Stimulation. I was awake. Surgeon drilled about a 3/4 inch hole on front part of my skull, implanted an electrode in my hypothalamus. Cut an incision in the rear of my head and fed the wires through my head and now into my chest where they implanted a pacemaker inside me. 2 weeks later  turned it on.

April 1,2011. The pacemaker and lead wires were removed due to an infection in my chest. I woke up on Sunday morning to find puss dripping from my scar on my chest. Went to hospital, kept me over night and then told me I had to have surgery next day to have it removed and re installed about a month later. I was asleep for surgery #3. Months went by and the secretary forgot to contact me so when I finally saw my neurosurgeon and asked for next surgery I asked it be held off until September and mentally and physically was worn out from 3 surgeries. I wanted to enjoy my summer with my family as anyone knows it not just the person whom is sick, its the whole family. My next surgery was booked for Sept 6

November 13,2012 I had my 4th Surgery. I did not have it Sept 6 as planned because I went into the hospital with a slight cold and cough. I never get sick. I had not had a cold or flu in 4 years as I am a strong supporter of Cold FX. I stopped using it because of cost and couldn't afford it. And voila I got sick. They sent me home from the hospital and thank god they did because that night I got violently ill for 6 weeks. I could not believe how sick I was and how long it lasted. They rescheduled when I felt better for November 13,2012. Day after my sons birthday. The week prior I had an abscess tooth and had a root canal. Dentist said it was bad. Should be...was almost a $1000.
So I had surgery. Re installed pacemaker, and lead wires. I am home recovering now. After a week the neurosurgeon turned it on and at present I have 0.6 volts firing to my brain. My headaches are still coming strong with no relief . I see my neurosurgeon every month for re programming. DBS is ONLY a 50% chance at pain reduction it is not a cure. I am the 2nd person in Canada to have this. First in Ontario, and the 17 th person on the planet to have DBS for Cluster Headaches.

I am still very nauseous and dizzy. Sometimes the dizziness is bad. Bending,kneeling over is hard. I have a lot of pain in my chest and arm where the pacemaker is. I am not complaining. It is what it is.
We shall see what the future holds. Godspeed.

My Family

My son was born

Passions and Hobbies

We are must have hobbies and passions in life aside from our loved ones and pets.

For me, mine is cars.

Introduction to a Cluster Headache Survivor

I have a rare neurological disease called "Cluster Headaches" or more commonly known as "Suicide Headaches" for obvious reasons. I am starting this blog to connect, help and provide assistance to others in need to help educate others who know, be related to or possibly work with someone with this condition.

Cluster Headaches affect less than 0.01% of the worlds population. There is Chronic like me and Episodic.I have been chronic for over 7+ years.
The disease is life altering, and been clinically noted as 'The Worlds Most Pain full Disease On the Planet Known to Medical Science" quoted by Dr.Peter Goadsby.
The attacks range from 30 min to 3 hours long every attack. The intensity is different for each attack. I get anywhere from 1 to 15 per day everyday.
I have had 4 brain surgeries thus far.

Sufferer VS Survivor

Cluster Headache

Good day, you will notice throughout my blogs I will rarely and try not to put "Sufferer" as terminology as I feel we are "Survivors".  Its a testament to the fact we are still here surviving this horrible dreaded disease. Although it is unfair we have this. We must survive each day and persevere and continue to survive each day. Whether you are chronic like me or episodic.
We are survivors


ClusterHeadSurvivor video page from my YouTube

I have my own You Tube page and some of you may have seen my videos.

Here is from my first video to most recent on my page "ClusterHeadSurvivor"
The videos were posted as I made them. I apologise for some quality and watermarks etc
I am not computer savvy. I am even surprised I got this far on my blog, LOL
So bare with me throughout the blog of a Cluster Head Survivor

***Please do NOT Pitty me throughout these videos, made for educational knowledge,support of others with this disease and to hep others to know of someone surviving****