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.

First. I am not sure and I don't think there is a human on the planet that can tell me when I got sick. That a cluster headache was in my body before that day. There were no signs. Other than being a chronic migraineur. There were no physical signs of my health deteriorating.

It is not like I was warned either. No one said oh hey, by the way, you have been fighting chronic migraines since age 8. There is a slight chance you are going to have cluster headaches.

In fact.  Up until the day I was diagnosed and really until a month after diagnosis I had no idea what even a cluster was.

I was under an immense amount of stress at that time in my life. My son had been mauled by a dog and was dealing with night terrors just months prior, my ex-wife and I had lost a baby on my birthday and that day she was in a car accident. I guess my body said "Time Out". And then it happened.

I did not know what was happening or why.  And ONLY because I am persistent I was diagnosed in a year. Even unheard of in the day and age. Used to e 16 + years for a diagnosis. Now it's down to 4.

Even after I was diagnosed. I still had no idea. Only a month after my diagnosis I began to research it online and to my horror found out it was incurable and I would die like this and the suicide rate was the highest for any disease.

Within that year my marriage dissolved, and that was the beginning of my life.

The next 5 years were trying in every aspect.
1. I never wanted to stop working. I actually was on unemployment from a plant lay off. I was making money on Employment Insurance and SUB pay through the union. But I actively looked for a job and in fact took a job for way less money. About $300 less money a week than my EI. ALl because I loved working. And wasn't one to sit on my arse. I could have stayed on EI and made more money but it would have run out eventually.
That particular job and employer were the worst employer I had ever worked for. 60+ hours a week and 100 of it was stress. ZERO empathy for my disease.
In Dec of that year, I had enough of the disease, my employer, and fake cowardly friends.
2. I ended up after wanting to die, opening my own business.  I thought could hide my disease and work around it. And I was wrong. I was finally doing a career I had done before but this time was my business, my way and I was so happy and loved it, Except the suffering. Customers soon figured out something was wrong with the closed for an emergency sign was up more than the open sign. As I would sit on the bathroom floor crying in pain. I closed the business a year later.
3.My personal life went from losing my marriage to dating. Extremely difficult. I would tell women on a date I was sick and never hear from them again. Or I would hide it and then get an attack and never hear from them again. And then I met my wife and everything changed. 8 years later married!
4. Friends,  The closest of people in my life for over 25 years told me to quit my whining its just a headache and I didn't need to quit my job. Never visited me in the hospital. Vanished. Abandoned.
It's ok. They are just fucking cowards in my eyes and everyone else I know thinks exactly the same of them,
5.Family. I have this disease. My family lives with the disease. It's that simple.
6. Healthcare. Getting sick you become a guinea pig for Pharma meds. They through everything the text book tells them to give to patients even though they know chances are it is not going to work.
5 years of pills making me sicker with no help. Then I pushed for brain surgery and the journey of that began. 4 brain surgeries later. And still no pain-free until magic mushrooms saved my life.
7. Acceptance of disease. Acceptance isn't a failure or succumbing. Committing suicide is letting the disease beat me. And I lived despite wanting to die twice. But accepting I could no longer work, go on disability and choosing to give back by means of the blog, the VLOG on youtube, making the logo for us, fund raising, TV appearances, and getting the word out on TV and the movies with celebrities.
8.My health. sadly my health has deteriorated far worse than just the headache itself. 150lb weight gain, chronic new head pain (16 months now straight). Being told I am stuck like this. Cognitive issues, memory loss, PTSD from brain surgery awake, vertigo, nausea, fatigue, feeling like shit 24/7.
9.Family. I brought this one up again because of the loss in my family we have endured. It's personal and very tough.

Despite the long goatee, tattoo's and I look like a bad ass biker to some. I am just no one special. I do for others as I wish to be done for me. Sadly doesn't always work that way.  I have managed in the last 12 years. More so last 5 of creating an incredible amount of awareness and advocacy for headache sufferers around the world. My fight is relentless.  Some months and even years have had more success than dry spells but I never gave up or stopped and did this almost with no money.

Thankfully I have had world famous celebrities back me up. It has been humbling. I never felt for a second none of it was done out of pity.  Something I have never wanted for another human being ever.
'
You do not need money to help others, create awareness.

I didn't want this 12-year anniversary blog to be all about the pain and physical suffering. I am sure you get that I hurt a lot and all the time. No secret and no sense bragging, lol.

I haven't been all pain, suffering, and crying. There have been great moments in my life. Meeting my wife. Celebrating our marriage every single day. I wake up every day knowing how blessed I am to have such an incredible human being beside me. We have traveled, shared so much together and I look forward to whatever life throws at us. We rescued a dog the day I got home from brain surgery and had 2.5 years with him. Now we have a puppy.And will be able to have a long life with her. We take care of my dad since my mom passed away and at times can be tough but it's what PROPER children should do. Take care of their elders.

I have learned in the last 12 years of living in pain that is indescribable that some things in life are not a loss they are a lesson. People come and go, lives change. I am also a firm believer in  Karma. If you are lucky you get to see it first-hand tow. hehe. Some people in life want to be everyone's friend except they are not willing to be a friend to everyone.

It has been 12 years. Over 13,140 attacks averaging 3 per day. A VERY LOW number. Easily over 20,000 hours of my life taken from me, I will never ever get back.

But I do not live for when I am hurting I live for now.

Seize the day, whatever time it is. Live life.

#StayPositive

                                                                   DBS Brain Surgery

                                                          ONS Brain Surgery

                                                                Wires in my head

                                                                      Buster-RIP

                                                                   Lisa Marie Presley

                                                                     Tim Allen

                                                                      Jay Leno

                                                                   Wedding Day Las Vegas

                                                             TV INterview on CTV

                                                                   Logo I created

                                                                    Alan Thicke

                                      Mom fighting brain cancer, dad throat cancer  survivor

                                                                      Jay Leno

                                                             Verne Troyer aka MiniMe

                                                              The Trailer Park Boys

                                                         My wife by myside as always

                                                                       Never Give UP

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

My dad is mute. Well, he can talk with the aid of a speaking machine. He is a neck breather. Lost his voice to cancer in 2001.

My dad and I would communicate through email as they lived across town and with smart phones we would communicate almost instantly. With dads speaking machine I can understand him 99.9% of the time. On rare occasions, strangers can understand him and others don't understand a single word.

Mom and dad came from Europe in 1967. On Canada Day in fact. July 1, 1967. So dad's English was a second language. Actually, it was like his 8th language he learned. So pops spelling wasn't always the best. So, if I got an email from pop, I knew it wasn't the best spelling. This particular day his email frightened me.

Dad's email was broken, gibberish and made no sense. I had just seen my folks about 1.5 weeks prior maybe 2 weeks and things appeared somewhat normal. Despite me having a gut feeling the last dinner I had over there, something wasn't right.

I got the email around 9 pm. I texted my wife the email made no sense and I was going to drive over to their place to check up on them. My wife was at work.

I drove over. And was horrified with what I saw.

My dad on the couch in his underwear. So weak, it took him 10 min to get him to say 3 words to me. They were " mom, sleep, week". I tried to get dad to drink a bottle of water but he was s weak he couldn't even hold the bottle of water. I walked over to the kitchen and it was in total disree. My folks have been impeccably tidy, neat, organized clean people. The kitchen had food over the stove, maggots and fruit flies. It was bad. It was a mess. I ran to the bedroom and my mom was asleep. I woke her up and she knew who I was but nothing else. Every answer she gave to any question was I don't know.

I called 911 and had 2 ambulances come. Because they were not in any trauma other than cognitive and were breathing and somewhat talking. They did not rush over. In fact, I wanted 30-45 min for an ambulance. Then only one showed. While we waited my mom was crying and didn't want to leave. My dad was able to nod to questions and turns out my mom had been asleep for 7 days. Literally.The paramedics then ordered a second ambulance. There was NO WAY I could take both my parents to hospital.

Since dad relied on mom for 52 years breakfast lunch and dinner, Dad was starving, dehydrated and weak. His ankles swollen and barely able to walk. Mom knew who I and dad were but that was it.

My wife rushed over from work, grabbed their dog and went home while I went to emergency.

So there I am with my mom on my left, and my dad on my right in two beds at the hospital.

Testing both my parents for obvious signs of cognitive and health issues. They took my mom for a cat scan. I spent the night sleeping in emerg on a chair with them both, Well I didn't sleep.

Doctors took mom away for the cat scan and pulled me aside. Since dad wasn't cognitively all there from lack of food and water, They spoke to me. They told me mom had 4 lesions on her brain.  And they were going to give her an MRI next. At 8 am. They told me my mom had 25 lesions on her brain, a large tumar on her lungs, One on her adrenal gland and in her liver too. They said she had 30-60 days to live. Maybe  60 with radiation.

They suggested radiation to start aggressive treatment for the next 5 days starting Monday. It was Friday now.

I was crushed, By this time they had given mom some medication to reduce the swelling in her brain. And she was now sorta able to cognitively speak normal and answer questions. And it is true, she was asleep for 7 days. No bathroom, no food, Just sleep. She said she had a bad headache and went to bed, Last she remembered. Dad did not know her prognosis. I didn't want to tell him because he wasn't well and I wanted a doctor to explain to him for validity. And they did after I went home.

I now had to tell my son and wife.

I went to their place and got clothes, and a few things. Rushed home on no sleep and did a few things that needed to be done. And back to the hospital. I had been awake 40+ hrs at this point.

This was an extremely tough time because we just lost our rescue dog and my son had left home few months prior. My wife and I had to make decisions for both my parents as I was the ONLY one in their life for the last 16 years. It was all on me. Everything. Right to the end.

When I arrived back at the hospital they had moved dad to the 4th floor. General medicine area. And mom to the 7th floor. Neurology.

When they told me where my mom was I had a hard time. Not only was it the same room I recovered from brain surgery in...it was the same bed. Same Doctors, nurses, staff...

We went at got dad in a wheel chair. And brought him to mom everyday. Dad was very upset. As I was too. He got told she was dying and his best friend of 52 years was dying. Mom was told before we got there. Yet the entire time no one ever talked about it to her. I asked mom once if she was afraid to die and before I could blink it was a stern NO.

Mom was right with God and had no fear of dying.

My mom was an emotional person but the best-hearted person you would ever meet. She loved and I mean loved cooking for people. She loved to see you leave full of food when visiting her.

Mom had watched a sibling die of starvation as a child. She had it really really rough as a kid. And it was important no one ever left hungry. My mom thrived on being a giver.

As mom laid there day after day, she knew what was happening but we didn't talk about it. No one wanted to upset her. She denied wanting to be in palliative because psychologically she knew. There was a waiting list to get up there and she didn't want to go.

She had old friends come and visit her and only once she got really upset. I'd rather not mention it because it was cowardly.

Every day  I was afraid is this the last time I'll speak to mom? Some days you would see her slip away. Some days she seemed fine. By the third week, we noticed a fast decline.

We were also cleaning out their place.  Selling 75% of their furniture, selling mine. And packing their stuff. We also had to hire a renovator to gut the basement and make it nice for dad to live in.

This same piece of shit renovator, 2 days after mom passed stole my mom's painting, took the balance of the money and ran off with a completely fucked up job unfinished and done very very poorly.

I gave my mom a haircut and it was the hardest thing I had to do. It was her last. She cried as I hugged her after. I picked up some hair and put it in my pocket.

My son would come to visit but stopped coming about the 3rd week. I'm sure it was as equally as hard on him but as a teenager, they deal with loss differently.

My mom did fall off the commode when she was there and turns out she fractured her spine and she was in grave pain.

The hospital was doing a fine job taking care of both my parents. Only once I lost it on a doctor and was close to being arrested.

They were transporting my mom to another hospital for radiation. To slow down cancer and one day they wanted to take my mom and leave her at the other hospital. I went ballistic on one doctor screaming at him telling him you do NOT remove a dying woman from her husband to another hospital! I'm sure my threat to his well being changed his mind. What fucktard takes a dying woman with a month to live away from her husband who can not visit her??? He knew my dad was on 4th floor and mom was on 7th but he said it is not convenient for us to keep them both here. I changed his mind. I am not a violent person but I got angry and ugly fast.

Mom spent 31 days in the same hospital bed I laid in. 31 st day she went to palliative. By this time dad was staying with us. He spent 14 days in the hospital. And was getting better every day with his health.

They asked if we wanted her to be comfortable but the trade off was she would be asleep or out of it while she was in her final time.

We all agreed she was in pain and needed relief. But the trade off was that she wasn't with us anymore to talk to.

That last day the staff told us she probably had a week. But we knew something was up. The day before my dad kissed my mom. And she kissed dad back. I finally had a chance to be alone with mom. As always dad or my wife was there. I promised mom I would take care of dad and the dog, and it was ok to go. That we loved her and would miss her. Her eyes were shut. I wasn't sure if she even heard me then her eyes opened for 1/2 a nano second and she lipped "I love you" to me. It was the last words she ever spoke.

The next day I had a gut feeling. We stayed to about 7 pm. At 9:30 we got a call to hurry over NOW.

........as I got off the elevator and seen the look on the nurse's face I knew she had just passed. We missed her by 5 min. I think mom wanted it that way. She didn't want us to see her go.

We spent the next 2 hrs sobbing over her and my dad wanted to leave. It was so hard because my mom was to be cremated and no funeral. It was the last time I was ever going to see her. Ever.

I was the last one in the room and left. As I stood in the hallway, The nurse was speaking to my dad and wife ahead of me.

All of a sudden I saw my mom pop out of the room on a yellow sweater, With a glow around her head almost like a halo but more light brightness. She waved and smiled at me.

I rubbed me eyes in total disbleif thinking I am under duress and just sad. And opened my eyes again and mom smiled at me again and waived and then she vanished.

I could abosiltely care or less if a single human being believes me what I seen. I know what I saw. And don't care what anyone thinks. It was mom saying bye to me.

It was probably the hardest thing I had gone through in life with loss. I had lost friends, I had lost my dog, I had lost my health but no one prepares you for this kinda loss. Compiled with my dad, renovator, no funeral. Cremation business who didn't release my moms remains for a week and all the other stuff going on was tough.  I did not start to grieve for some time to come.

It is only now I am able to talk about what happened. I smile more now thinking of mom then cry in sadness she is gone.

It taught me a lot. Life is short, precious and once someone is gone there is no righting a wrong, there is no more sorry's. No more making up or taking back or whatever. The time is now.

Mind you I live with the clearest of conscious. I loved my mom very much. I am so glad I spent all those years being there for her when others were not. I got to share 43 years of my life with my mom, And she gave me so much and sacrificed an incredible amount for her children. More than most.

I only wish I got sick after she passed. I can't imagine how hard it was on her seeing me suffer and go through all the brain surgeries etc. No parent ever likes seeing their child suffer no matter what age.

As sad as it was and as quick as things happened. I am glad I was there for mom until the very end.

This blog probably has no meaning to you but it was for me. And until you had a parent you love pass I guess it doesn't apply to you.And I hope it doesn't for a long time.

I miss you momma

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.

For years when I started my YouTube channel people's reactions were almost identical. Try pot, marijuana, ganja, Mary Jane, Cannabis, the herbs.....and many more names.

While I have so many different health issues, there is no such thing for me as one medicine for all. I truly wish that was the case.

I made a VLOG on my YouTube channel explaining Medicinal Marijuana and my prescription. The who, what where and why.

I encourage you to check it out, give a like and subscribe !

Click here to watch my Prescribed Medical Marijuana VLOG

200 th VLOG. Have a laugh, the world needs more of it.

Wow, 200 consecutive VLOGS. I did it !

Fact of the matter the first 100 seemed like they took forever but the last 100 seemed quick,

Well I have not got famous but I have received numerous comments helping people so that is all that matters to me. Helping others with positive messages to inspire people to live outside chronic pain.

This 200th VLOG was done over 200 VLOGS of some things funny.

Enjoy, and please if you haven't, SUBSCRIBE, LIKE and SHARE !

Click Here for VLOG 200

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.

Headaches and the ELTA bash.....

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

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-Our Hero's Bob and Dan.

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

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.

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.

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.

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....

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

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.

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.

Smoking and Weight

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

Cars to Stars

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

Elvis Presley

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

Surgeries 1 through 4

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

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

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

November 13,2012 I had my 4th Surgery. I did not have it Sept 6 as planned because I went into the hospital with a slight cold and cough. I never get sick. I had not had a cold or flu in 4 years as I am a strong supporter of Cold FX. I stopped using it because of cost and couldn't afford it. And voila I got sick. They sent me home from the hospital and thank god they did because that night I got violently ill for 6 weeks. I could not believe how sick I was and how long it lasted. They rescheduled when I felt better for November 13,2012. Day after my sons birthday. The week prior I had an abscess tooth and had a root canal. Dentist said it was bad. Should be...was almost a $1000.

So I had surgery. Re installed pacemaker, and lead wires. I am home recovering now. After a week the neurosurgeon turned it on and at present I have 0.6 volts firing to my brain. My headaches are still coming strong with no relief . I see my neurosurgeon every month for re programming. DBS is ONLY a 50% chance at pain reduction it is not a cure. I am the 2nd person in Canada to have this. First in Ontario, and the 17 th person on the planet to have DBS for Cluster Headaches.

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

We shall see what the future holds. Godspeed.

My Family

My son was born

Passions and Hobbies

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

For me, mine is cars.

Introduction to a Cluster Headache Survivor

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

Cluster Headaches affect less than 0.01% of the worlds population. There is Chronic like me and Episodic.I have been chronic for over 7+ years.

The disease is life altering, and been clinically noted as 'The Worlds Most Pain full Disease On the Planet Known to Medical Science" quoted by Dr.Peter Goadsby.

The attacks range from 30 min to 3 hours long every attack. The intensity is different for each attack. I get anywhere from 1 to 15 per day everyday.

I have had 4 brain surgeries thus far.

Sufferer VS Survivor

Cluster Headache

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

Blessings.

ClusterHeadSurvivor video page from my YouTube

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

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

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