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.
July 25,2005 My life changed that day forever. What I did not know what was happening to me then I would within a years time. I was lucky. Most are not diagnosed in 4 years. Used to be 16 years. I have met some who were not diagnosed in 25 years.
Also yesterday my life has changed forever regarding my family.I may blog at a later date but now isn't the time about yesterday.
In 10 years I have averaged some years 8 attacks per day, some 3,some 5,rarely 1, and some days north of 10. So lets do the math for a second. Lets for argument sake average 3 attacks per day on the lowest of the scale. 3 attacks per day x 365 days= 1095 per year x 10 years= 10,950 attacks. Again, that is a bare minimum number. Id be more inclined to say 5 per day but 3 for argument sake.
Now lets do the math on the time taken. attacks last 30 min to 3 hours long. Average attack is 1.5 hours. Majority is 2 but lets use low number again. 1.5 hrs x 10,950 attacks in 10 yrs= 16,425 hours of attacks. This number does not include throwing up after, fatigue, rest after and a large portion of those attacks were while the rest of the world was asleep. Nor the thousands of hours spent at doctors offices. These numbers are not competition. As not a single cluster head world wide wants to be number 1. No one wants to validate these numbers. These factual numbers are for clarification only and justification to those who are not sick. Sadly even after the attack. The disease is present. The disease is present in fatigue, isolation, abandonment, exhaustion, anger, sadness and fear.
July 25, 2005, my life started a new journey.
OMG am I have a brain aneurysm? What the hell is happening to me? Oh wait its gone. Maybe it was a bad tooth ache? Maybe its just stress? Funny my debilitating migraines have never been behind my right eye. That's strange. Well I am exhausted. Its probably because my wife(ex now) and I just lost a baby, and my son was dealing with night terrors from being mauled by a dog. And because my wife(ex) was just in a horrific car accident ? Hmmm, well what ever it was it sucked so bad.
Bam. Another one. This time a bit worse. A few hours goes by....another then another. After a week I am unable to sleep. And when I finally fall asleep it happens again. And again. Wakes me out of dead REM sleep. I tried everything in the medicine cabinet. Nothing was working.
It started in my tooth/gumb area and moves its way into my right eye. Sometimes goes to my right ear. I called my dentist. Book an appointment. He did 2 root canals because I said after the first one the pain was getting worse. $800 later. After a month. I call him back up yet in worse pain. Now affecting my sleep, work and day to day life. We then remove the tooth. I wait about a month for it to heal and I am still in pain, again getting worse. More of these attacks. Lasting 30 min to sometimes 3 full hours. He then refers me to a doctor at University Hospital here. I wait months for the appointment. This is about 9 or 10 months at this point of having these "attacks" everyday, day and night.
At the time my wife(ex now) and I were dealing with the loss of a baby, her car accident and chronic severe pain she was in 24/7. My sons night terrors, private investigators following my wife(ex now) and sitting in front of our house with cameras thinking she was faking it.And other day to day issues. All while having these attacks. But after many months of these unknown attacks,I was able to finally see a doctor. I had no idea what I was in for and was worried I had brain cancer or an aneurysm. The only people who knew was my immediate family. I had not even told friends or work what was happening because I did not know.
So I go see this Dr. I walk in this office. He is as dry as sand. Cold as an ice cube and had the empathy of a chair. I sat in what was like a dentist chair expecting me to open my mouth. Nope. 7 questions. I do not remember what they were but basically me explaining what was happening. Where the pain was, when and what I have done to treat it. He looks at me and says" You have Cluster Headaches, my next appointment is here" and literally walked out of the room. Looking back i think what a jerk. Then I thought oh ok. Well I have migraines these are cluster headaches. How bad can they be.
I then went home and told my wife(ex now) and son. He was about 5 so he didn't understand much. My son would cry for my severe attacks screaming don't die daddy. It was tough.
So, about a month goes by and these attacks are getting so severe it had altered my life. Shear exhaustion. Fatigue, pain so severe I had not yet wanted to kill myself( that comes later) but bad enough I had to take time off work, cancel plans, feared going to sleep, feared leaving the house. I was becoming recluse.
I then had just got a computer and decided to search "Cluster Headaches". Truth be know my life forever changed from that moment. I now knew my fate. I learned what Chronic was since i was about a week or so away from celebrating 365 days straight with zero remission. I learned that many commit suicide learned there was no cure. I learned I will have this until I die. I learned I needed a neurologist and fast.
I then made an appointment with my Dr. then. Who retired shortly later. He called them Cluster Migraines which infuriated me to this very day. I blog about that below as they are not Cluster Migraines. He referred me to a neurologist who I will remain nameless because she said stop your whining I have migraines. Lady, comparing your migraine to my cluster is comparing a paper cut to a bullet wound. This woman used my body was a funnel for every know pharmaceutical drug. I had zero relief only side effects. Her lack of empathy and 1 min appointments writing a script as fast as she could to only have me out the door before I could say a single word. I do not like this woman. She has zero bedside manner. None.After impotence I threw all medicines down the drain and figured after all these side effects that did not help a single attack I was only hurting my body even more. In that time frame I had gotten separated, buried my sons grandfather who I loved very much. And was trying to start my life over again. This was only the beginning of the loss I was going to go through in the next 10 years.
I then got a referral to see Dr.Paul Cooper. One of the most highly respected neurologist in the country with Cluster Headaches. I think(my memory is bad) that it was the 3rd or 4th year of being sick when I finally seen him. We discussed the array of drugs I used to treat CH and how I am chronic and have no remission and nothing worked. At this point he just recommended pain management. Being a strong man mentally, physically and emotionally I figured I could beat this. I was wrong.
I discuss this much in other blogs but fast forward a bit, I gotten another job which was so stressful having the owner of the company being the mitigating factor to adding stress to my attacks my life was in turmoil. To the point I wanted/tried to kill myself in Miami Florida. That was Dec 2008. I was loosing relationships with women. Either they did not understand what was happening to me or thought I was exaggerating or faking it.
I was loosing friends because it taken over my life for a long time and I was no longer able to hide the disease. I had also had an attack in front of 500 people at a car show which then cost me my vanity. I had made a video on YouTube for close friends and co workers to see to perhaps understand. Sadly it did jack shit. I heard suck it up and quite your whining more than I ever heard "Oh I am sorry you are not feeling well, I understand". I had lost relationships, friends, my career and my vanity. I could no longer hide what I had. I could no longer be who I was. The disease had 100% taken over my life.
Once I had decided to live because of my son and faith I had a dream of mine to own a business. A themed business that no one ever done before to my knowledge. It took 10 months from a thought to opening the doors. I invested my entire life savings, sold my motorcycle and gave it a go. I figured that I could hide my disease best I could being the owner operator. Sadly I was mistaken. In 1 year to the day I closed. To this very day I get a lump in my throat every time I drive past. The "closed for family emergency" sign was up more than often while I cried and screamed and pounded my face on the bathroom door while customers looked inside wondering why I had to suddenly leave all the time. I tried so hard yet customers looked at me and asked if I was alright. My fate was happening in front of me in the mirror.
Shortly after closing the business I had to take another job to eat. It was a lousy job with horrible pay an within 3 weeks I was permanently injured on the job. I had also looked into brain surgery.
I had gotten many emails over the years through my YouTube account and dismissed a lot of it. But my attacks were so bad i was willing to look into it.
I waited a long time to see Dr.Paul Cooper again and begged him for surgery. I read a 7 page letter, cried my eyes out and said i wanted to live. He then referred me to a neurosurgeon. I also had to then have psychological testing to assure basically if it didn't work I wasn't going to commit suicide. This process took about a year.
By the time I had brain surgery I was out of options. I had finally found the love of my life. Someone who accepted me for me and ran to me when I had attacks not away from me like cowardly friends, like i was leper. I did not want to loose this girl over my health. So I was willing to try anything so she and I could sleep once throughout the night.
My first surgery was occipital nerve stimulation. Scared the living Jesus out of me as I woke up during surgery for a split second. Something that haunts me to this very day.
The surgery did not help. After 2 weeks it was removed by pulling the lead wires out of my head as they were protruding out the back of my head to an external neurostimulator.
I then had Deep Brain Stimulation brain surgery. Got an infection in the first month and had it removed and then the 4th brain surgery to reinstall everything. ( all discussed in previous blogs more in detail ). At that point I was the 17th in the world to have this surgery done for CH and the 2nd in Canada. No idea what the number is now.
A couple friends of my wife who are sick recommended to me that I volunteer. Despite succumbing to being on disability and unable to work anymore that I could still be of help to society. I tried a few avenues and was turned down. They wouldn't say why but i understand. Who would take me knowing I could cancel or have to stop and leave immediately on site of an attack. Where I am disabled but not able to help or cancelling because of fatigue. I got it and understood why. I was feeling an all time low. Not only could I never work again but not even wanted for volunteering.
A friend of my wife suggested Blogging. While I wasn't convinced anyone would read my crap. I gave it ago. To date as I write this over 50,000 people have read it. Shocking to me.
Fast Forward if you read my blog you already know what I have done for the CH community. First let me say it may have been my efforts but it was for everyone never myself. Nothing I have ever done for the CH community has ever been for myself. For those who are reading this for the first time. I have successfully made a few YouTube videos which are now used as teaching tools for professors and medical students in 5 different continents. I did a fund raiser for Cluster Busters. I designed a logo/decal which has become very well known around the world as the logo that recognizes this disease. I have been featured on Pod Casts discussing my story, recognition from celebrities regarding my efforts with advocacy. Been on TV sharing my story.Educated First responders, hospitals and medical students on the disease. And more. I have done a lot in a short period of time for CH because in 25 years less than 2 million has been spent on CH. Disgusting considering almost 2 BILLION has been spent on MS which has the same disease rate. Yet CH is 20 the national suicide rate in the US. How is that fair? Its not. It takes not just me but us to accomplish goals in advocacy and awareness. Speaking up for those who lost their fight. Giving hope to those with this disease to live for when they don't have attacks instead of living in fear of the next attack.
This blog has snowballed into now years of advocacy from me for us. Sharing my life's dreams, acclamation's, failures and success stories has been inspiring for many.
While over the years I have had great loss. I have learned that sometimes loosing someone isn't a loss at all.
Courage doesn't come from a job. Being courageous comes from within. Stepping out of your comfort zone to help someone who needs it.
If you do not have CH. Listen to me carefully. Being sick and having to prove we are sick is insulting. Telling me or another person "Oh I can't handle seeing them that way(having attacks or in the hospital)" is just cowardly. What do you mean you can't deal with it? try having your head drilled into? Or have this disease.People are selfish and only about them self and their needs. So no loss and if you come across these people. Know they are far sicker than we will ever be. Pray for them, they need more help then we do.
If you come across someone like my wife in your lifetime. Hold on to them tight. Because real friends and relationships do not give a rats ass if you are sick. They will understand you had to cancel last minute or leave early unexpectedly. Cherish these people because they like/love you and they don't treat you as expendable. I have learned if you are patient. Karma has its ways.
While in 10 years I have tried every known pharmaceutical known to man kind for Clusters. Twice I have wanted to die. The last time thank God I was in a better head space or I wouldn't be writing this. It was only in the end I tried something that gave me some relief. With my strong conviction against illicit drugs. Having my son lost a cousin to being murdered by a drug dealer. A wife in recovery. My decision to do something illegal wasn't in my DNA. I am just not hard wired that way. It was not part of who I am, what I am about. What I stand for and what I was all about. I also wanted and believed 100% that DBS was the answer and the relief for CH. When I do things its for all CH survivors. Think about this. I had brain surgery for all cluster heads. I had my head drilled into before "Busting". Crazy isn't it. I discuss my decision to do this in another blog below. While Busting isn't a cure, it is band aid for us now.
While I know many Survivors around the world who have had this horrid disease 25+ years and waaaay more attacks then I have had or yet to have. It doesn't matter. 1 attack is inhumane to any human being.
There is no prize for chronic or episodic survivors. There is no winner winner chicken dinner for who has had the most. I have friends who have this disease and cancer to boot. I have had friends who have taken their life. This disease has robbed us.
While this disease has shown its true colors of cowards , it has shown us great friends, new relationships with new beginnings and journeys all of us have been on.
My family and I had the pleasure to travel to Nashville to meet fellow survivors from around the world and share each others stories. We come from around the world, from different back grounds, different ages, different lifestyles yet we all share something in common. Surviving. It was a life altering experience to be in a room with people, not say a single word out of our mouth yet have a conversation without a spoken word. Not one single person had to convince each other. We also got to meet some of our hero's who have done so much for the disease. Inspiring to say the least. If one person walked away from the conference wanting to live and do the next right thing then it was worth it. We all had a story to tell and share.No one was better than anyone, no one was worse. We were all equals.If you haven't gone to a Cluster Busters convention. Go.
Social media in 10 years has exploded for me and CH. Whether its Facebook you fancy or twitter or this blog or others there is a means to instant info online from smart phones to computers. Help is a click away. Inspiration is a click away. A friend is a call or click away. While all info on the Internet is not always factual. While some people get into social media and Clusters may not always be sincere to help others. The info is there and use best judgement on educating yourself.
In last 10 years I have made some wonderful relationships with people across the globe. I am forever grateful. In 10 years I have lost my career, relationships and my vanity but gained so much knowledge, encouragement and survived the impossible and lived through 10 years of torture that some wouldn't last 10 seconds. I have planned my funeral once and wanted to die twice. I had 4 brain surgeries, had my head drilled into yet a fungus saved my life. Well it was friends who saved me.
I had rescued a dog who in fact rescued me after brain surgery. RIP BUSTER. I know that something can love you unconditionally and doesn't give a crap if you are sick. Highly therapeutic yet severe mourning when they pass. True loss only occurs when you love someone more than yourself.
I have had great loss in my life. Sometimes its not a loss though and yet a blessing. My loss of health has resulted in a lifetime of paying it forward and I will spend my last breaths advocating for those who lost their fight or those who will get sick like me. While I do not celebrate 10 years of being sick. 23% of my life. I acknowledge 10 years of my life taken from me but I celebrate the friendships I have created together. I celebrate some accomplishments of advocacy and awareness. I celebrate my hero's Dan and Bob, my UNSUNG Hero's my wife and son. My dog ironically named "Buster" who just passed away.RIP. My other dog who is another one who just loves me unconditionally. The acknowledgement I have had, that we ll together celebrate together from awareness from celebrities. Which is no easy task. Trust me. The TV special, the social media. The blog. the friendships. I could not have done it without you.
While I am still sick. I will still fight for a cure, hope, faith, awareness and love.
While I post this blog today with great sadness for my family. I am who I am because of them.
And I am proud of who I have become.
Blessings, and pain free wishes to those survivors
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