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


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

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.