H.O.P.E. Hold On Pain Ends ................3 years remission today

Remission....what a crazy word that has so much meaning. I won't use the word cured until I have passed away simply because I can not predict the future only hope and that is what my goal of todays blog is about.

3 years ago May 16, 2019 I was the first person to have stem cell specifically for cluster headaches aka suicide headaches or if you are technical trigeminal cephalalgia neuralgia. Whatever floats your boat please use....

They are not migraines. Not even close. different disease in fact and I have both. Actually I had 4 different headache types. Chronic clusters, chronic migraines, tensions and a 4th headache doctors were never able to diagnose and only guesstimate in treatment.

Since May 16,2019 My cluster headaches stopped as well as migraines, tensions and the 4th undiagnosable headache is about 80% gone. The 4th headache I use a low dose of Celebrex. I got relief from the 4th headache 1 year 8 months after stem cell therapy. Stem Cell regenerates for up to 2 years. Once that 2 year mark hits, that's how your health will remain with what's been repaired. You can have stem cell again and again.

I have had zero clusters and no migraines!

I suffered chronic migraines and tensions since earliest memory around age 8. clusters chronic since day one July25, 2005. 4th headache came 5 years after brain surgery. My aphasia came then too. 

When I first had stem cell MANY were not quick to congratulate me in the medical field because doctors base their findings on stats. Well, how's 3 full years? I have even been able to fly, drink alcohol, be under severe stress, smells, foods that used to trigger attacks etc. A lot of things I was never able to do with this disease. Like leaving the house without fear. Not walking around with a pocket full of meds. Its pretty great. When doctors in London On told me there was no more hope and to just go home. Well assholes. I am alive. And living my best life. Now life consists of getting older like most 50 year old's with arthritis and aches and pains. I wish my old neurologist would know this. He was dead against psilocybin which is a proven aid in preventing or stopping cluster headaches which has been proven time and time again to give relief this disease. Yet so easy for him to write harmful prescriptions with terrible side effects.  I am proud to know I have changed the course of history with survivors out there seeking some sort of treatment after failing at other treatments. I do acknowledge that I am an anomaly. I was a severe chronic cluster head  averaging 3-5 attacks per day for 15 years. long time. chronic migraines since age 8 and the 4th headache started 5 years after my 1st brain surgery Occipital nerve stimulation. deep brain stimulation followed after. 

Chronic cluster heads are 10% of population. having chronic migraines 5 per week. A rare case. I was the 2nd person in Canada at the time to have Deep Brain Stimulation, 1st in Ontario,17th in the world (2 did not make it), and now 1st in the world to have stem cell specially for clusters. It has been done specifically before me for migraines and been very successful.

I am living with PTSD, and a TBI, ongoing ulcers etc related from the disease and treatments I have endured.

I immensely regret my brain surgeries as it has left me with a lifetime of unrepairable brain injury, short term memory loss. I am not complaining I am just simply acknowledging the life I have. I  have had alot of gastro issues from 5 years of Toradol and over 10 using Aleve (NSAIDS). This has caused 2 ulcers, Bleeding and a lot of pain. 

I know my story of having a friend who happens to be a celebrity help me is wild. I am beyond grateful I no longer suffer the way I used too. I am sharing this story of hope. This isnt some BS story, A video below shows my procedure. I am not saying it will work for you. I am saying it worked for me and changed my life. So much that my wife and I packed up and moved across country to start a new life.

You can make your own assessment of my journey. If you read the rest of my blog you will see how stem cell changed much more than just my headaches, it also fixed a lot of other health problems I had. If I ever had the opportunity to do it again, I would in a nano second as I am confident it would help my back and knee arthritis.

I have never forgotten where I came from. And my heart bleeds for any cluster head trying to make another 24.

Pain Free Wishes. Do not give up HOPE. Hold On Pain Ends

For information regarding Stem Cell Treatment: Call Dr.Chris Calapai 516-794-0404 Garden City NY/516-433-3252 Plainview NY ( I am not paid to post this video by Dr. Calapai/done on my own merit of gratitude. )

CLICK HERE TO WATCH PROCEDURE 

Humility, Gratitude and Reality

 Its been a minute eh....well I been living life to the best of my abilities.

You reap what you sew

So My wife and I been in Nova Scotia for over a year now. It was a year December 24 on Christmas Eve.

I left London Ontario without any hard feelings, resentments or feeling of ill well to those who done me dirty. Sorry. There is none. I actually left with peace. 😀

No one can take away peace. its like loving yourself. No one can MAKE you miss them, love them or feel bad you are gone.

My days are filled with gratitude, and happiness. I go to bed with grace. And repeat daily.

I hope you find solice and peace in your life too. Be well. cause we are doing fucking incredible!

2 years today making medical history. First on the globe to have stem cell for cluster headaches into complete remission

 2 years ago. May 16, 2019 I had Stem Cell Therapy by Dr. Calapai in NY.

Suicide is a permanent deicison to a temporary problem......a story of hope, healing and health.

 Please share this story of #HOPE with someone who may need to hear this.

My dad.... May 10,1941 to April 20,2020

 I been trying to think today of what to write. I am filled with incredible emotion of great sadness and gratitude at the same time. My father passed away today, 1 year ago.

I guess todays blog is for me. Its all part of the grieving process and healing. I really had a tough time when my mom died and rightfully so. Like anyone, loosing a parent you love and cared for is deeply sadnening. I cried every single day for a year when my mother passed. And have done the exact same thing for dad. Eventually in time those tears turned to smiles when I think of my mother. I dont think I am anywhere near it now with dad. Time will tell.

My folks came from Switzerland(Originally Germany) when they immigrated to Canada on Canada Day July 1,1967. They came with my older estranged brother, my mom and dad and $25 to their name getting off the plane.

Prior to that. Dad grew up in war time. He vividly remembered the Nazis, the kind Americans who was kind to dad and the appreciation for a life in Canada when they arrived.

My father had quite the work history from starting out apprenticing in Germany at hotels that were castles. taking care of dignataries, presidents and so forth. His career switched to being an airline Pursor for CP Air. God, he loved flying but eventually gave it up to be home with his family. He then switched to selling cars. He held the record for two years straight with the highest sales in Canada. Selling over 370 cars in 1 year. In 1977 we moved back to Ontario where dad started selling cars again but soon hired at GM Diesel Division in London Ont. Where he worked until he went on permanent disability due to throat cancer in 2000.

Dad built Buses, Locomotives and even Terex trucks.He hated the job, as it was a hard factory life. Not the white gloves he was used to wearing. It paid well and allowed us to have a good life. He did it for us. NOT HIMSELF.

In 2000 dad got cancer. Throat cancer. He had to make a decision but asked my thoughts. He decided to persue having a full lyrengectomy. They removed his entire voice box. Already haveing 1 lung, emphizema didnt help him and made the rest of his life very difficult. Dad was often made fun of, starred at. Dirty looks, snears and comments from IGNORANT FUCKS who have no clue what he was dealing with. He constantly struggled with his health. Many days he tells me he wished he has not had the surgery but he beat the odds and lived 20 years as the life expectancy was 5 years.

My father and mom loved on another deeply and in a way I only understood after moms passing. He struggled badly with her loss. They are together again, home in heaven. This gives me peace.

My father had an increidble life. Met many celebrities, been around the globe 26x. and loved to travel, fish and CNN. 

Dad was very proud, and  happy for our life in Nova Scotia. I sincerely wished he could have seen it before he passed.

Dad, Kristen and I miss you terribly. Loosing you was the hardest thing we have had to live with. You were more than a dad, You were wisdom, compassion and the most generous person. Your memory will live in us every day. There are not enough words to express my grief. How sad we are but we are at peace and I owe that to you. I love you dad. Rest Easy xoxo

This was the last time I seen my dad alive in person and last time I hugged him alive.

Perfect End to a Perfect Day without a single regret

 Today, there is HOPE....

Advice for caregivers, spouses, family and friends who have a sick person in their life.

 When was the last time someone you cared about got a cold or a flu? When you heard did you say sorry you are sick or I hope you feel better soon. Right? What about a sick person who doesn't get better? How do or should people around that sick person support the sick person? Well here is my 2 cents.... coming from a person who is sick.

The person you know, the person you care about is now sick or has been battling and finally diagnosed. What to do? How do you help? 

1. The persons disease/ailment/pain/disability is NOT your fault so dont try to compensate as it is.

2. Care for that person as YOU would wish to be cared for. With compassion, empathy and love.

3. Treat the person like you normally would. Treating the person as an invalid isn't beneficial to anyone suffering,

4. Do not abandon the person. If your friend is unreliable. Meaning they leave early, arrive late or cancel it is not their fault. They didn't not show up intentionally. They are fighting a battle you know nothing about .KEEP INVITING THEM

5. Ask questions. DO NOT ASSUME, Every person who is struggling with something is fighting this them self. Your version may be completely different from the suffering they are experiencing. Telling the person I had that once most likely isn't what the person is experiencing.

6. If you can't deal with it, tell the person. Living or being around a person who is sick is not easy. The sick person may have mood swings, pain you couldn't remotely comprehend, and fighting a battle you know absolutely nothing about.

7. Don't offer advice. As much as you 'mean well" telling a person with an incurable disease that drinking more water is the answer to a cure is probably gonna get you a black eye or a middle finger.

8. Think if what this person is experiencing in their life, how greatly their life has been disrupted. Inability to work, do social activities, just trying to bear one more day in pain and suffering. Do not be judgemental. If you see the person having a good day being active. Support it. Don't say "well I seen you at the mall or park, you must not be sick. No we have good days and make the absolute most of good days. That doesn't mean we are cured, healed or better. Most likely if you seen the person at a store or out, is that they are having a good day. 

9. Isolation. Probably the worst. Even more than living with a disease or pain. Being ignored, forgotten, abandoned is the absolute worst thing you can do to a sick person. Don't know how to deal with it? Imagine being the sick person having to deal with it....suddenly your feelings of " I cant bear to see the person suffer" doesn't mean jack shit. Man up. Be a human being not a fucking coward who doesn't have the kahunas to see a sick person in your life.

10. ADMIT you do not know, understand or get it....talk to the sick person, ask questions on how to be beneficial, remain in their life and offer support, compassion and empathy. Leave your opinions at home.

If you have read this far. Know someone going through a tough time, These tips may help instead of hinder. I speak from personal experience.

It took 1 person to care about me to get me better when others didn't care I was even breathing. 

I write this with great gratitude for the people in my life. Love you all.

Perspective of 2020

Perspective is everything

I'd complain but who would listen?

 How many time sin life have you said that or heard someone say that phrase?

You are never too old to make change.

How many times in life had you said to yourself that "if" things could be better, "if" I had the chance to make change, or "If" this was this or that....so what the hell is stopping you from making change?

Anniversary of Cluster Headaches

July 25,2005 was my first cluster headache. Little did I know what was happening to me that day or what the next decade plus would be.

Did you ever get asked at a job interview.... Where do you see yourself in 5 years? My answer should have been "ALIVE" if all goes well.....

H.O.P.E. Hold On Pain Ends Cure Chronic Podcast

Hope is sometimes all we need. Hope when taken away is almost if not the last straw when holding on and trying to make another 24 hours. I know this all to well.

Medical history is made. Cluster Headaches and Migraines in the last 365 days. CNN LISTEN

My first cluster headache attack was over 15 years ago. That was over 16,425 attacks ago. Approximately 24,600 hours(if averaging 3 attacks per day) of my life GONE. Those hours were spent fighting for my life.

I've had many say "my mom gets those, or I had one of those once". chances are, most likely not. Cluster Headaches affects 0.01% of the world. Approx 1 million people globally in what 7 billion people? We are a grain of sand in the world. Invisible. because its an invisible disease that unfortunately unless you are a neurologist you are not taking us seriously. Even a good neurologist can throw his hands in the air and say the odds of help are very slim. As my own neurologist told my GP. I was even told at the pain clinic after waiting 1 year to be told. Go home, there is nothing further we can do for you. The meds you are in will end your life sooner than later. We can no longer help you but if you want to join a support group on living in pain we can sign you up for that in a years time......

I needed that group when I first got sick, Not 15 years later. In 15 years I tried my hardest to live with this disease. Open a business and try to hide my disease. I tried dating, raising a son, being a son, being a friend. I fucking tried everything I could with this disease. Even a suicide attempt in Florida. Again hours away again in April 2019.

I don't know how many times I have heard someone say to me, try this. I did and then had 4 brain surgeries. Which left me with PTSD, a Brain Injury (TBI), aphasia years later, short term memory loss, cognitive issues reading and comprehending documents, instructions. Difficulty learning new information. And to me the worst part. A 4th undiagnosable headache that even to this very day they can not diagnose and struggle to treat. This 4th headache I am still battling as I write this. This headache, leaves me bedridden without meds. The meds I am on are meant for 5 days max use. I been on them 4 years. And they only give me 40% relief. As the years went by 40% pain reduction is the best they can do and what I live with to this very day.

This 4th headache is unlike my other headaches. Migraines can last hours to weeks. Debilitating, vomiting, pressure. No fun. Cluster headaches last 3 hours max and you can have up to 15 a day. The pain of a cluster heachache is indescribable torture. Tension headaches go away on their own and usually a simple Tylenol make it disappear quickly.

Today, May 16, 2020 is 1 year from Stem Cell Therapy I had by Dr. Calapai in NY. I have kept a headache diary. and tracked my headaches since the first day.

Overnight the first thing we noticed that my aphasia  had gone. Aphasia for me was inability to get some words out when talking and stuttering. It was progressively getting worse everyday. Being able to speak normal was a blessing. Then I noticed my sciatica pain was reduced by 50% overnight and today is sitting about 95% pain free from sciatica. Sciatica if you have never experienced is a nerve trigger mostly by back pain. My l4,5 caused my sciatica pain. Now usually only happens driving in my wife's car. For some reason the seat triggers my back pain. I am very grateful for this to be where it is. Next. In 365 days I had 1 migraine, It lasted almost a week, It was around the 1st or 2nd month of stem cell. Since then I get migraine aura's. That feeling when a migraine starts. But it hasn't gotten full blown. Some cannabis usually does the trick. I rarely get tension headaches anymore. Most just go away on their own or a simple Tylenol removes it. Now, Cluster Headaches. The worlds most painful disease known to medical science. FUCKING GONE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Insert Hallelujah Music. Dance naked, jump up and down. Gone. NOT 1 fucking cluster headaches once!. Ive had some auras. Once I thought I was having the beginning of one and it turned out to be a tooth ache. But zero clusters.

To my knowledge, I am the only person in history who has successfully treated cluster headaches with stem cell therapy and been in complete remission.!!!
CNN are you listening??? Dr.Sanjay Gupta....this is HISTORY for the medical community. I know Doctors and medical professionals rely on stats. Well here is legit factual stats. 365 days cluster headache free!!! THIS IS HISTORY and hope for anyone suffering this horrible disease.

For well over 10 years I spent my time advocating, and creating awareness for this disease. At my wits end of wanting to die, I contacted everyone I could for help. Dr. Phil. Dr. Oz, Doctors, CNN's Dr. Sanjay Gupta. Anyone who could potentially help me with my headaches. With no help.

I had become good friends to someone who wants to be anonymous that reached out at my lowest of lowest. I was suicidal. I wanted to die. I had fought as hard as I could. Struggled as long as I could. Was told to go home from the pain clinic as their was no more hope.  I had no quality of life. Life was not worth living anymore. I told my friend this, and he knew I was suffering badly. Except he offered HOPE. By Help. Something I had lost a long time ago. He offered me help from a doctor he knew personally that he personally seen positive medical results first hand from other health problems. At that point I had NOTHING to loose. I wanted to live is what most people fail to comprehend. I wanted to die. But wanted to live. All I ever wanted was to feel better. Not suffer so much. Have a quality of life. I realize I am sick. I realize certain thing sin life are over for me that I can no longer do and I have accepted that. But I tried and tried and tried with everyone for help. Who knew my help was going to come in the form a friend. A hero. My brother.(not sibling).

So I am off to NY for Stem Cell Therapy. And at this point i had nothing to loose and everything to gain. I ALWAYS was 100% positive with every doctor I met. I always tried what they suggested to me, Pills, surgery, You name it. I never said no. I even did magic mushrooms which did help for awhile relieve the intensity and frequency of clusters but stem cell completely stopped 3 of 4 headaches dead in its tracks PLUS stopped aphasia, sciatica, mental health, physical health, back pain, labido like I was 18 again. Just overall well being, feeling better. I can't explain it. I am a different person. Different outlook on life. What matters, what doesn't. Who matters, who doesn't. I value people not money. Life is different. Its better.  A year ago prior to this I didn't have the physical capacity or mental capacity to drive to Toronto Ont from London. A 2 hr drive. Now we packed the house and moved across country. Hopefully that should give you the gist of how much better I am.
In 1 year from today. I had stem cell therapy, flew to Halifax with my wife for her holidays, Fell in love with Nova Scotia and flew home, sold the house and moved across country. Something I could have never done without this therapy. I would not even have been alive if it wasn't for my friend..FACT.

I am still sick, I still have a smaller list of health problems which I am still battling but I am LIGHT YEARS away from where I was. I suffer far less. I am very grateful my dad got to see me get better, Be happy and peace in Nova Scotia before he passed away last month. In fact, yesterday was his birthday. I know he and mom and looking down happy for us.

Since I advocated and created awareness for cluster headaches I read many many many claims of the word "cure" from fellow cluster heads. I know my statements above may come with skepticism. And that is good and welcomed. Proof is in the numbers. Numbers do not lie. 365 days cluster free.1 migraine in a year at the beginning of stem cell. Put that in your pipe and smoke that!!!

Many BULLSHIT claims on line from rubbing your temples to "drink more water". I've done them all including having my head drilled into awake for brain surgery. So this isn't a claim. These are FACTS. I had stem cell therapy by Dr. Calapai in NYC  and I am in remission for 1 year. That's a fact. Each day I continue to be better is further proof this worked for me. After THOUSANDS of Dr visits, thousands potions, treatments this worked for me. I have a quality of life worth living. I now celebrate life. I love life. There is so much I want to do and see in Nova Scotia with my wife and family out here. I have no desire to end my life anymore. I never wanted to die before. I wanted to live but only if it meant I didn't suffer.

I can tell you Rock Bottom teaches you things that a mountain top never will. That health is the most important thing you can have. That people matter not money. Things I once loved and cherished are now an after thought. What matters doesn't and now what never mattered is most important to me. Helping others. I lost both my parents recently. There was NO U HAUL behind them. They took their memories and left behind what they contributed to the world.  Money means absolute shit to me. I don't care how big your house is, your car. None of that means shit to me. How you treat others, how you give back in the world. That is what matters to me, And I surround myself with people who are just like that. Givers, not takers.

I look back at the last 15 years of my life. How sick I was, How terrible life was. How some people are just......in my past. I look forward to days ahead with my family here. Travelling. Exploring, Helping those in my community. It has been a helluva journey. Things are only going to get better. Even with this Covid 19. Kristen and I have big plans for the future.  Life is good. We are happy and at peace. I still have 365 more days left with stem cell to get even more better. Stem cells double daily for up to two full years. I am at the halfway point and things are looking positive for me.

I am not the type of guy to scream" Hey I did this, go do it, It worked for me it will work for you". I know everyone is different. everyone responds to treatment differently. Everyone has their own case of the disease differently. But I will say Stem Cell worked for me and gave me hope.

 You will be hard pressed to find a day in the last 365 that I haven't  said I am grateful or told my buddy how much I love him and how grateful I am for what he did for us despite him wanting zero recognition from day 1. I love you brother, thank you for helping me. You are the best bud I could have ever asked for. Being there saving my life, the treatment and when I lost dad. You were there and continue to be everyday. I love you. Thank you Dr. Calapai for the treatment, thank you Redecan for the flight. Thank you to everyone who didn't care I was sick and still was my friend not the cowards who ran the other way. Thank you to my family here in Nova Scotia. You welcomed us with open arms and we still can't believe we are here. Thank you to my neighbours who welcomed us and took care of us during our  14 days in the house getting us groceries and everything.

And very important. My wife. You took the vows of better for worse when worse was all we knew. You were beside me for every brain surgery, every attack, every heart break, loss we shared and stuck by my side through all of it. Its not me who deserved the private jet, and the trip. It was you. You stuck by my side through all of it, When people ran the other way, you ran towards me. Ill never forget how you stuck by my side through all of it. Now its time for you to enjoy all the good that has happened to us both. Anything good should be for you not me. You deserve it babe. Grateful for you. We are here in our new home with Annie and life aside from Covid and loosing dad is pretty good.

Feel free to share this blog with cluster headache and migraine survivors. It may save another life. And potentially give someone a quality of life.

I dedicate this blog to you my friend. Without you I wouldn't be here, be better and have the life we have now. I love you.

Pain Free Wishes to anyone trying to make another 24

Never Give Up HOPE (click here)

Rest Easy Dad.

April 20,2020 Was not a day to celebrate 4:20. We woke up mourning the loss of 22 fellow Nova Scotians from a mass murderer. This day felt so different. We ended up going to bed mourning another person. My dad.

Corona Virus or Covid-19 tips for staying home, finding things to do and being mindful.

I hope if you are reading this, you are home and healthy and riding out being at home.

Merry Christmas 2019

8 months ago, I was going to commit suicide. A friend/hero saved my skin (see blogs below) and in August we came to Halifax to visit him.....4.5 months later on Christmas Eve literally we arrived here to live!!

We left London Ontario Dec 21,2019.

Full Circle of Life

20 years ago I was channel surfing and flipped on a show called "The Trailer Park Boys", an instant cult hit mokumentary of shenanigans, fucks, shits, cock suckers and other obscenities. While 20 years ago, language like that was highly censored and the first of its kind.

Without risk, there is no reward. Do not give up hope. Keep trying.

If you been following this blog you will know that I went from being suicidal, miserable, in such severe chronic pain 24/7 365 to actually having a quality of life. All from being a fan of a TV show. Crazy huh?

But lets look at actually what happened.

Ending my life would have stopped any chance of this happening!!

In the end of April 2019, I was planning my suicide. I was 8-12 hours away. I am sorry if this upsets you, or your thoughts of me wanting to die thinking I am a coward for wanting to cash out, or you simply just understood the severity of my life.

I don't want to write how bad my life was. Because

Bubbles, aka Mike Smith saved my life! From fan to friend......Never give up HOPE

I have looked death more than once right in the face. I was in a place of shame, misery, pain and suffering and when doctors here told me there is nothing we can do for you, and the medication will end your life sooner than later.....it would break anyone after being sick 15 years.

And all of this changed from a TV show.....fucking crazy isn't it?

I am confident you have at least heard of

Stem Cell Treatment

I went from not wanting to be here to being on a private jet flying to NYC all because a friend offered to help for no reason other than being a kind decent human being by giving a very sick friend HOPE.

Yes, that is where it began.

Go Fund Me started by Mike Smith aka Bubbles from The Trailer Park Boys

If you know me personally, or follow my journey, than you are well aware its NOT just cluster headaches I live with. It is much ore than that.  Chronic migraines too, as well as Sciatica, neuropathic pain and so much more than that. Pain is pain. In many forms,levels and severity. In 14 years I haven't gone a day without some sort of severe chronic pain. But this isn't abut trumping anyone's pain.

I have become friends with Mike Smith, the actor who plays Bubbles on the TV/Movie series The Trailer Park Boys. Aside form being a huge fan, I am also his friend. Yes, he means that much to me. If Mike was a plumber, he would still be thought of equally.

Now here is the harsh part to read but true.

December 31,2008 when I jumped in front of a bus in Miami, I thought then I was at the lowest of low I had reached. Since this past September, my last appointment with the pain clinic was my last and final hope. But they told me there is no more tests to be done, no more referrals, n more nothing. and Sir" We are very sorry, we do not know what is wrong with you and btw, the medications you are on will end your life sooner if you continue to stay on them". Before anyone worries, they are NOT narcotics. Narcotics do not help this pain. I have been offered everything.

Everyday, I got a bit worse. Not much but day after day, week after week, month after month, And after years of fighting an additional pain on top of all the other things were taking a toll on me mentally and physically.

My wife worried everyday, wondering if I would still be here when she got home from work. I would tell her, don't be sad when I am gone one day. Be happy I am no longer in pain. My fiend who passed away last month understood this. His passing, I wished it was me.

I am not depressed. I am in a circumstance that would kick anyone's ass. Isolation is probably the worst. It has only added to my heart break.

I was really struggling bad. And one day a friend was like "Hey Man, how ya doing?". And I basically verbally diarrhea all over him. I could have lost a friend by dumping this all over him. And at that exact moment. it could have been anyone on the other end listening to me cry. That person was Mike Smith. I do not refer to him as an actor, a celebrity or a Trailer Park Boy. He is Mike to me. I love him.

Mike reached out to me as a friend and offered help. At first I was like thanks Bro, ad then realized he was serious. Dead serious. The very first thing he said to me was " I don't want any acknowledgement, I don't want this about me". He said . "I am going to do everything in my power to help you". An offer no one has given me after I lost all hope.

Mike literally saved my life. As much as I love my wife, she can't fix or heal or take my pain away. Only sit there in horror.and watch me suffer helpless. My wife deserves way better than this. She deserves a healthier version of me.

Within a couple days, a Go Fund Me was up, he is making  personalized videos for fans on www.cameo.com (links for all below). and is doing everything in his power to help.

I am still in total shock, awe and we both are so humbled by his offer, kindness and generosity.

In the past few days of watching the video,ad watching donations come in, we are so appreciative of every dollar raised, every tweet, Facebook share, everything that everyone has contributed. Kristen and I are so grateful and humbled. Thank you everyone!

I make less than $10,000 a year on CPP disability.  So any dollar raised means as much to us as much as more than 1 dollar raised. Equally grateful no matter what amount. I know $5 for some is a lot as it would be to us.

We plan on heading to NYC to a friend of Mike's who does Stem Cell Therapy to try to help me. This Doctor has taken great interest in my case and wants to try to give me a better quality of life. We both feel in our hearts we won the lottery. I know I struck gold with my wife but twice? Yes, I am eternally grateful to this man, and my wife for struggling with me by my side and never once ran off like a coward.

Not all super hero's wear capes. Some wear thick glasses and love kitties.

Here is the links.

CTV London News story CLICK HERE

GO FUND ME CLICK HERE

To book BUBBLES for video message CLICK HERE

Celebrate the strong women, not the weak cowards!

First, Happy Birthday to my best friend, my UNSUNG HERO, my everything. My wife.  Today is her birthday. Today, I celebrate one of the strongest women I ever known next to my mom.

I loved a friend I never met.

I get contacted from people from all over the globe. Whether they have cluster headaches, migraines or just another rare disease and health issues. Yes, I am contacted by all sorts of different people.

So a couple years ago a

Slowly Slipping Away.

No, it's not the song from the Toronto band Harem Scarem....it is me, unfortunately.

This is a subject I rarely talk about and as things get worse I feel it's imperative to write it down before it gets worse.

I am talking about....

I was the first

I am a barber by trade. I went to school in 1992, got my apprenticeship out of school. Completed the 3500 hours required. I wrote my test and became licensed in May 1995. Even before I got my license I knew one day that I have my own

Hero's stay, cowards run!

I am pretty confident any person who is sick has dealt with heroes and cowards. So which one are you?

Letting go

Accepting someone's behavior and path is just only part of letting go. Choosing to support that behavior is not letting go, it is enabling it.

There came a point in my life when letting go is

Good Bye........... 2018

In less than 24 hours for everyone it will be New Years Eve and 2019 will be here. I would like to reflect on the 2018 year with you.

Be Inspired

Be inspired..... https://london.ctvnews.ca/video?clipId=1572457

                        https://www.youtube.com/watch?v=8DUSBXw7txw

Merry Christmas

WHY ?

I really wanna know why?

Never miss an opportunity to be great

Had I given up, none of this would have ever happened.

into my 4th year of waiting Doctor finally told me...

I been sick 13 years. I got this new head/neck pain over 3 years ago which greatly reduces the quality of my life. And now it will reduce the...... WATCH HERE

After watching my video I would like to stress that I never gave up. they did.
So please stop assuming it was me who gave up.

Angry? Disheartened? Frustrated? PISSED OFF !!! All the above and more.....

I am the 1st to defend the health care in our country. I am the last to complain. I considered myself very fortunate and blessed to be sick in this country.

3 years ago today. I lost my mom to brain cancer.

At some point in everyone's life we loose a parent. Never in a million years did I think it would be this hard.

July 23, 2015 I found both my parents in

13 years ago.....really? There is way more to it than people think.....

Have a watch ! Listen, learn....SHARE....  CLICK HERE

How we celebrated Canada Day !

I encourage all of you to do the same ....click here BE INSPIRED

Interviewing an UNSUNG HERO ! 5km walk for #CureForClusterHeadaches

I can not begin to tell you have happy I am to see soe many get involved with fund raising for cluster headaches.....ClusterBusters INC to be exact. It so warms my heart. I love seeing people get proactive and get out there and help, make change and be positive for a disease that ultimately drives people to Suicide !

Todays Blog/Vlog is about doing this 5k walk (2.5 for me and 2.5 for my wife) and sharing what its like from her perspective. How she feels about what I and others go through, stigma of being sick with an invisible disease, brain surgery to natural medicines !

Listen to an unsung hero never complain, always offer help, love and support and you will understand why I married my best friend.

                                                                          CLICK HERE

It has been a minute....

Pain Free Wishes as always and sending my best positive vibes and prayers to everyone in pain.

My blog has taken a bit of a back seat since I started VLOGGING over a year ago. Making video's consumes alot of time and effort. Also having a subject to vlogging and a message is very important.

I have always prided myself in

If there was ever a VLOG I wanted you to share...it is this one.

 SHARE this YouTube VLOG..................SHARE THIS CLICK HERE

This wasn't supposed to happen to me, I did not sign up for this sh!t

                                  Please Share, like and subscribe to my channel. Click here

                                                                  #StayPositive

Homeless at Christmas !

What does Christmas mean to you?

5 years ago was my 4th and final brain surgery

So basically. I had DBS. Short for Deep Brain Stimulation. 3x.

Why three times? Well.

Imagine being sick, now imagine being homeless

The title speaks volumes, doesn't it?

12 years ago today I got sick-recap

Hard to believe that 12 years ago today was my first attack and my life would change forever.

To think, all I have been through in 12 years. It's crazy.

NO ONE could have prepared me for what was going to happen. Now, today. not too much surprises me anymore.

Let's review and reflect on 12 years.

Today, 2 years ago today I was about to loose my mom.

My dad is

1st time ever Medical Marijuana prescribed !

If you have read this blog before you already know I live with a bunch of things. Cluster headaches, migraines, tension headaches, PTSD, IBS-d, anxiety, exzema, and sciatica.

May I ask a favour please?

Without sounding arrogant, judgmental or just a nob, can I ask a  favour, please?

People In Pain VLOG Living in chronic pain positively

Back in November, I think I started a daily VLOG on YouTube called " People In Pain" on my YouTube channel "ClusterHeadSurvivor" (no spaces).

I woke up today.....

I woke up today....

My 7 Min of fame...... on TV again, birthdays, vlogs and the HERO Bill.

Wow, what a month its been so far.

My dear friend Bill of Hawaii competed in a 24 hr race in Texas.

Support Bill Greineisen's 24 Hours Race in Texas for Cluster Headaches

Wow, how do you thank someone?

Really, to even be thought of let alone raced for I am truly humbled. I am at a loss for words.
And I guess from what my wife tells me, all the hard work I been doing with the blogs, vlogs, logos, awareness and advocacy is starting to come to fruition or is continuing thereof.

#UnderTheHat day....March 21.

#UnderTheHat day....

Today is hashtag Under The Hat day.....What does this mean? it means one day a year we as survivors of the world's most painful disease acknowledgment for something that affects us so deeply.

Chances are you are reading this after today March 21. But every day we live with this incurable disease that has taken the lives of so many.

100 VLOGS, consecutively I did it

Thank you for reading this blog and watching my daily VLOGS. It is a struggle to film something everyday. Some Vlogs are short, some longer.

5 Years ago today I had brain surgery, Deep Brain Stimulation

5 years ago today, I had Deep Brain Stimulation Brain Surgery. It was my 2nd of 4 brain surgeries to have.

#HOMELESSMATTER .... The Homeless Matter

Why am I blogging with a vlog about the homeless?

It could have very well happened to me and you. I have seen with my own eyes people I used to work with living on the streets. Factories close, people lose their home because they can't pay their mortgage or rent. Marriages fall apart due to job loss, health, addiction, mental health, and getting sick like me. And yes people can become homeless for some of those reasons.

We did it, thank you to everyone who reads this.

Wow, I can't believe this. I am so humbled beyond any measure of words. It is kinda surreal and hard to digest but thank you.

Trippin' With Leigh Documentary on Swearnet.com

This blog today is about the multi-talented actor and singer Leigh MacInnis who also happens to be my friend. He is known for his hilarious portrayal of the character's Don and Donna on Trailer Park Boys seasons 8 to 10.

Merry Christmas

Today is the day, it is Christmas Eve.

Started a new video series. Filming life of "People In Pain"

This is a project I have wanted to start for awhile. I may have been one of the original cluster heads filming myself and posting videos on YouTube and there are many Vloggers out there filming their daily life. But I have not seen videos of people living in pain.

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.

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.

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.

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.

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.

Laying blame or Love Life

Before you read this, look in the mirror.

Many of us in life ask ourselves

Coping with Cluster Headaches

Coping with Cluster Headaches.....

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

Buster

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.

It absolutely blows my mind

It absolutely blows my mind.

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.

I survived 44 Years.

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

Bureaucracy of being sick-Strangers and Dr's please read, Listen and Learn from your patients

There is a certain astigmatism within myself in being sick.

CH Readiness KIt

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

What Makes Us Happy?

What makes us happy? Well, isn't that a loaded question....

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.

Death, life after.....

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

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....

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.

Merry Christmas, Health and Happiness into 2016

Merry Christmas to all of you.

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.

Advocating through the internet. Pod Cast with Maple Syrup Shots,

I been very fortunate enough to be chosen as

Loss

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.

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.

"Busting" the Beast-Citizen Science

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.

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.

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.

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

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

Cancer

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.

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.

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.

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.

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?

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?".

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.

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.

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....

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.

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

Taggart and Torrens Pod Cast talks Cluster Headaches- Yes J-Roc and Our Lady Peace-drummer!

I am truly humbled this week. The start to 2015 has been quite remarkable. I been truly blessed.

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.

Cluster Headache documentary needs your help

Tyler Mann, a fellow cluster head and film maker is making a documentary on Cluster Headaches.

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......

You are responsible for.......

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

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.

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.

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.

Winner Announced for my personal copy of "Lucky Man' by Michael J.Fox and Cluster-Suicide Headache decal

Congratulations
Winning Draw.....please watch and share to see if you are the winner.

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 michaeljfox.org & clusterbusters.org help find  cure to 2 both diseases

Winners Announced for Cluster Suicide Headache decal

Winners Announced for Cluster Head Suicide Headache decal.

Cluster Suicide Headache decal/sticker avail to 50 people.

Offer to 50 Cluster Heads world wide.

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..

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.

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.

Busting

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.

Brain Freeze Challenge raising awareness for Cluster Headaches

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....

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.

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

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

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.....

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...

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.

Thanks to those who support me, even the haters! Love you all

Recently, I received what most would call "hate mail" from some person on my You Tube videos

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.

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.

Wtf is wrong with people?

Some days I shake my head

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.

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.

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

http://www.youtube.com/watch?v=Z2mf8DtWWd8

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.

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

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.

My Life with Suicide Headaches aka Cluster Headaches

Special Thanks to Rami for making this video for me. Blessings all

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.

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

DRUGS and MY CHOICE

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.

2 years ago today.....as I write this at this very time...

2 years ago today I had my 1st of 4 brain surgeries. It was

Humble beginnings and gratitude today

Jan 2010 I had decided to

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.

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.

Days gone past. I miss working.I love volunteering

As I sit here and ponder

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.

http://www.youtube.com/watch?v=fNouKvGCqIM


********************************************************************************

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

https://twitter.com/drsanjaygupta

http://sanjayguptamd.blogs.cnn.com/

https://www.facebook.com/pages/DrSanjay-Gupta/117263381701271

http://www.emoryhealthcare.org/neurosurgery/surgeons/sanjay-gupta.html

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.

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.

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 www.michaeljfox.org

Although I do not have PD, I have CH and

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

Happy Mothers Day

Happy Mothers Day mom. 

I love you 

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.

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.

Happy Birthday to my beautiful wife

Today is a day to reflect upon my best friend, my wife.

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

Best Birthday

My birthday a year ago (as I wrote below) was

Happy Birthday to me, praying for a friend today

Today, I am 41. Yipeeeee. A year ago I

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

One year ago today...

A year ago today I almost

Feeling better but not holding my breath.

Today, I am feeling better but not holding my breath.

Gratitude

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

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.

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.

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

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

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 it...in middle of the night. Start/ finish. Don't matter.
I can't smile everyday

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

Frustrated

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?"...

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.

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.

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".

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

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.

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

Humility

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

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

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.

Dedication

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

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.

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.

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.

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

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

RIP

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.

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

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.

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.

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

http://www.youtube.com/user/ClusterHeadSurvivor/videos?view=0&flow=grid

Now here is a collection of videos from YouTube.

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.