Saturday, May 30, 2020

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.

A decade and a half of struggling to midnight to make another day.

I know this. If this is happening to you. I believe you. And know you are valued, you are important. You have meaning and substance and you matter in this world. I personally may not know what is going on in your life. I may not understand the pain you are in and that you are going through. But know that I believe you. I believe your struggle is 100% real and validated and please never feel you need to prove how sick you are. If you have to prove to anyone how sick you are it is time to re evaluate who you listen too.

This podcast Cure Chronic is a little bit about my story of HOPE and how things got better.  Many other stories of survivors out there with many diseases helping others.

Have a listen, share, offer hope to someone needing to hear this message.

If you have cluster headaches, and or migraines and health problems and not sharing this then you are doing a disservice to those who are suffering seeking help at their wits end. This isnt about me, or you this is about all of us suffering in pain.

There is several platforms to listen to this podcast....
 CLICK HERE

Saturday, May 16, 2020

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



Friday, May 1, 2020

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.

We were following the news of an armed active shooter on the news not to far from here. (RCMP shot him 25 min up the road from here). We were bewildered because this doesn't happen in Nova Scotia. It actually doesn't happen in Canada. It happens in the US because of guns and the STUPID gun laws in the US. Active shooters are so rare in Canada. Its literally unheard of.

As the day went on. I had this gut feeling of loss. I can't really explain it. I knew something was wrong. Not just the 22. I didn't feel like being high and celebrating 4:20.

We SKYPE my father in Ontario almost daily. Sometimes when we didn't it was because of Covid 19. No one left the house or did anything. So, there wasn't much to talk about but probably 5 or 6 days out of 7 we would Skype my dad.

When we decided to move to Nova Scotia last August, we asked dad who is a widower if he wanted to come move with us. Dad flat out refused. He did not want to come. He wanted to be on his own. He also said he didn't want to change banks, pharmacy etc...which he ended up all changing anyway. Dad was a strong willed person. Dad had lived with us for over 4 years. When my mom passed away we took dad in. Fed him breakfast,lunch, and dinner. We did his laundry, cleaning, took care of his daily chores and maintained his car. We did this when I was really sick. My wife and I both pitched in as best we could. Dad went from a fully furnished apartment to loosing his wife to a fully renovated basement with brand new floor to ceiling. It was really nice. He never lifted a finger. We took care of everything as mom was dying with brain cancer. Some days I slept 1 hour.

Dad spent over 4 years with us. And I know our decision to move to Nova Scotia came as a shock to dad. He was sad we were leaving but knew why we left. It was a mutual decision between my wife and I. Dad was 100% supportive of our move and journey. He was truly happy for us. Not just because we were starting a new life but because I was getting better. Suffered way less and had a life worth living.  My mom and dad came to Canada on Canada Day July 1,1967 with $25 and my brother. So for us to move to Nova Scotia with some $ in the bank was a blessing. Dad helped very much so. The reason we live here is because of dads help and support.

Before we moved. Dad found a beautiful brand new apartment building. Really super modern, very lush and comfortable. He loved it. We got dad set up before we moved. He was so happy. He loved being on his own. At 78 years old he learned how to cook, use a stove, washing machine,dryer, getting groceries, and he even learned how to use a treadmill. Up until Covid 19 closed the gym he used the treadmill daily. He had no intentions of passing away. He had planned on visiting Nova Scotia. But the last two times we Skyped dad I was crying inside. My poor father was going to be stuck in that apartment for minimum 1 year before he could come here. My father was very very high risk of infection. He had COPD, 1 lung, a neck breather and had a mini stroke a year and  a half earlier. His gate was off. He walked very short strided steps. Sometimes using a cane or walker.  For him going to the grocery store getting food or prescriptions would wind him out pretty good. But it gave him something to do.

Dad had ongoing health issues. One being he had paper thin skin. Like Kleenex. It would tear so easily. Removing a bandaid would cause 3-6 months of wrapped cotton bandages because he would bleed so much. He struggled for 20 years with mucus from his hole. He had a hard life. People would tell me I am so tough for living through 4 brain surgeries but looking at my dad. He was the strong one. If I have any will in me its because of dad.

Dad was very very lonely. He struggled with that even living with us. Just because we were there doesn't mean you can't still be lonely. He was. he missed my mother so much. I don't think he ever got over her passing. It took myself years to now smile when I think of mom instead of cry.

Last few times I skyped dad it broke my heart knowing he was stuck in that apartment alone. for at least another year because of Covid. We were so worried about Dad getting Covid 19. So much he actually told us to stop bugging him about it. Only because we cared. My wife and I were all Dad had. He had friends, but we were his entire life. For 23 years I was the one who took care of both my parents, who helped them when they needed it, We took care of moms passing. And now we took care of dads passing. In fact my wife deserves the most praise for doing the paper work that I cant and making sure all the t's are crossed and i's are doted. Dad was very meticulous with the will and how he wanted things done. Thanks pops. It made things easy.

When we arrived back in London to deal with the estate, I found a sense of peace. Because Dad is no longer alone, he is no longer suffering with a multitude of health problems. He is with mom now. No longer lonely.  For that we are grateful. We miss dad. My wife very much so. They had a very close intimate relationship. My wife loved my father dearly. But we are at peace now because being alone in a 1 bedroom apartment with no visitors, no local family to visit. Its hard and sad.

Dad was very very happy for us and we are grateful dad got to see me better and healthier. What my parents see me endure for over a decade and half must have been exceptionally hard for them. Dad was so happy for our new home, our new life in Nova Scotia. How freaking happy we are out here. How life did a complete 180 from suffering relentlessly, to wanting to die to the life we have now. It even boggles my mind daily. I think many days I wake up thinking its a dream.  That I am better, have a life worth living now. The life we have now, I never even could have imagined or dreamed of.

Mom and Dad did not want a funeral. There is no funerals in Canada now anyway because of Covid 19. Mom said to me, if you didnt come see me when I was alive don't bother standing in front of my grave. Dad felt the same. So do I. No funeral. no service. No celebration of life. My wife and I celebrate their life everyday. I have no regrets as their son. I did the best I could helping them when they needed it and was there for them before they even had to ask for help. My wife had a great relationship with both my parents and they were mom and dad to her. Annie our dog was the light of my dads life. He missed her so much when we moved. I sent dad videos almost daily. it meant alot to dad.

Unfortunately dads last days were spent watching the news about 22 of our fellow Nova Scotians were brutally murdered. Dad and I were floored what was happening. I'm very sorry dads last images of life were a monster and worrying about our safety. Had this lunatic made it back to Dartmouth. God knows what more destruction he could have done. We are still mourning the loss of everyone.

That is one major difference we notice out here. People have eachothers backs here. They help one another out. They offer to help before you have to ask. My neighbour who I became great friends with. has brought us dinner when dad died, got us groceries because we are quarantined, taken our garbage out when we were away. People here are just incredible. Some days I feel like an imposter here not being a Nova Scotian because we just got here but there treat us like we been here our who life. If you haven't seen the hashtag but that is why we are #NovaScotiaStrong We help one another, lift one another up and encourage one another to get through.

When we flew home and drove around London Ont. First it was weird because it was like we never left. But  we have a complete different life, We visited my old house/neighbourhood. Seen a couple friends at a HUGE distance. and a park we took Annie to daily. But as much of memories and a life we once had in London, it was time for us to go home too....back to Nova Scotia. That is our home. That is where we live, That is where we are happy and making a life for ourselves despite Covid 19. I do have family here. Not blood. But family to us.  Family who not only saved my life but gave me a life worth living. Ironically, and live 5 min from me. We are happy here. Dad knew it and was happy for us. We have ZERO regrets leaving London. Trust me. we waited over 4 years for things to happen and they never did. So why stick around? Why be in a place that you are forgotten and ignored? My dad and Kristen's mom are all we had in London holding us there. We got an opportunity in life that I could have only imagined. Dad knew that and was happy for us. Everyone we called to tell them dad had passed, told me how proud he was of us and how happy he was for us. Even though we were so far away from dad. This makes me smile knowing dad was at peace too.

Loosing a parent you are close to is hard. Both my parents last words to me and them was that we loved one another. We consider our selves pretty blessed. Dad, I will continue to make you proud. Keep mom company until we get there. Great things are coming for us dad. I am so grateful for being your son. Thank you pops. We love and miss you and momma.

Godspeed and rest easy.

Love Tom and Kristen and Annie







Wednesday, December 25, 2019

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.

Sunday, December 1, 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.

Friday, November 22, 2019

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.

Sunday, October 27, 2019

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

Friday, August 30, 2019

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

Tuesday, June 4, 2019

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.

Friday, May 10, 2019

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






Friday, April 12, 2019

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.

Monday, March 11, 2019

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

Saturday, March 9, 2019

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....

Sunday, March 3, 2019

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

Wednesday, February 27, 2019

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?

Thursday, January 17, 2019

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

Monday, December 31, 2018

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.

Saturday, September 22, 2018

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.

Tuesday, September 11, 2018

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.

Sunday, August 26, 2018

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

Monday, June 18, 2018

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

Wednesday, May 2, 2018

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

Wednesday, March 14, 2018

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

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Monday, November 13, 2017

Tuesday, July 25, 2017

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.

Sunday, June 25, 2017

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.

Thursday, June 1, 2017

Monday, May 8, 2017

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).

Thursday, April 13, 2017

Thursday, March 23, 2017

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.

Tuesday, March 21, 2017

#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.

Sunday, February 26, 2017

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.

Thursday, February 23, 2017

Sunday, January 8, 2017

#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.

Friday, December 30, 2016

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.

Tuesday, December 27, 2016

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.

Monday, November 21, 2016

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.

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.

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.

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

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

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

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

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

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 michaeljfox.org & clusterbusters.org 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

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.

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

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

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

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.

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.

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


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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

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 www.michaeljfox.org

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

Gratitude

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 it...in 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

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?"...

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

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

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

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

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.

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

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

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

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.