My first cluster headache attack was over 15 years ago. That was over 16,425 attacks ago. Approximately 24,600 hours(if averaging 3 attacks per day) of my life GONE. Those hours were spent fighting for my life.
I've had many say "my mom gets those, or I had one of those once". chances are, most likely not. Cluster Headaches affects 0.01% of the world. Approx 1 million people globally in what 7 billion people? We are a grain of sand in the world. Invisible. because its an invisible disease that unfortunately unless you are a neurologist you are not taking us seriously. Even a good neurologist can throw his hands in the air and say the odds of help are very slim. As my own neurologist told my GP. I was even told at the pain clinic after waiting 1 year to be told. Go home, there is nothing further we can do for you. The meds you are in will end your life sooner than later. We can no longer help you but if you want to join a support group on living in pain we can sign you up for that in a years time......
I needed that group when I first got sick, Not 15 years later. In 15 years I tried my hardest to live with this disease. Open a business and try to hide my disease. I tried dating, raising a son, being a son, being a friend. I fucking tried everything I could with this disease. Even a suicide attempt in Florida. Again hours away again in April 2019.
I don't know how many times I have heard someone say to me, try this. I did and then had 4 brain surgeries. Which left me with PTSD, a Brain Injury (TBI), aphasia years later, short term memory loss, cognitive issues reading and comprehending documents, instructions. Difficulty learning new information. And to me the worst part. A 4th undiagnosable headache that even to this very day they can not diagnose and struggle to treat. This 4th headache I am still battling as I write this. This headache, leaves me bedridden without meds. The meds I am on are meant for 5 days max use. I been on them 4 years. And they only give me 40% relief. As the years went by 40% pain reduction is the best they can do and what I live with to this very day.
This 4th headache is unlike my other headaches. Migraines can last hours to weeks. Debilitating, vomiting, pressure. No fun. Cluster headaches last 3 hours max and you can have up to 15 a day. The pain of a cluster heachache is indescribable torture. Tension headaches go away on their own and usually a simple Tylenol make it disappear quickly.
Today, May 16, 2020 is 1 year from Stem Cell Therapy I had by Dr. Calapai in NY. I have kept a headache diary. and tracked my headaches since the first day.
Overnight the first thing we noticed that my aphasia had gone. Aphasia for me was inability to get some words out when talking and stuttering. It was progressively getting worse everyday. Being able to speak normal was a blessing. Then I noticed my sciatica pain was reduced by 50% overnight and today is sitting about 95% pain free from sciatica. Sciatica if you have never experienced is a nerve trigger mostly by back pain. My l4,5 caused my sciatica pain. Now usually only happens driving in my wife's car. For some reason the seat triggers my back pain. I am very grateful for this to be where it is. Next. In 365 days I had 1 migraine, It lasted almost a week, It was around the 1st or 2nd month of stem cell. Since then I get migraine aura's. That feeling when a migraine starts. But it hasn't gotten full blown. Some cannabis usually does the trick. I rarely get tension headaches anymore. Most just go away on their own or a simple Tylenol removes it. Now, Cluster Headaches. The worlds most painful disease known to medical science. FUCKING GONE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Insert Hallelujah Music. Dance naked, jump up and down. Gone. NOT 1 fucking cluster headaches once!. Ive had some auras. Once I thought I was having the beginning of one and it turned out to be a tooth ache. But zero clusters.
To my knowledge, I am the only person in history who has successfully treated cluster headaches with stem cell therapy and been in complete remission.!!!
CNN are you listening??? Dr.Sanjay Gupta....this is HISTORY for the medical community. I know Doctors and medical professionals rely on stats. Well here is legit factual stats. 365 days cluster headache free!!! THIS IS HISTORY and hope for anyone suffering this horrible disease.
For well over 10 years I spent my time advocating, and creating awareness for this disease. At my wits end of wanting to die, I contacted everyone I could for help. Dr. Phil. Dr. Oz, Doctors, CNN's Dr. Sanjay Gupta. Anyone who could potentially help me with my headaches. With no help.
I had become good friends to someone who wants to be anonymous that reached out at my lowest of lowest. I was suicidal. I wanted to die. I had fought as hard as I could. Struggled as long as I could. Was told to go home from the pain clinic as their was no more hope. I had no quality of life. Life was not worth living anymore. I told my friend this, and he knew I was suffering badly. Except he offered HOPE. By Help. Something I had lost a long time ago. He offered me help from a doctor he knew personally that he personally seen positive medical results first hand from other health problems. At that point I had NOTHING to loose. I wanted to live is what most people fail to comprehend. I wanted to die. But wanted to live. All I ever wanted was to feel better. Not suffer so much. Have a quality of life. I realize I am sick. I realize certain thing sin life are over for me that I can no longer do and I have accepted that. But I tried and tried and tried with everyone for help. Who knew my help was going to come in the form a friend. A hero. My brother.(not sibling).
So I am off to NY for Stem Cell Therapy. And at this point i had nothing to loose and everything to gain. I ALWAYS was 100% positive with every doctor I met. I always tried what they suggested to me, Pills, surgery, You name it. I never said no. I even did magic mushrooms which did help for awhile relieve the intensity and frequency of clusters but stem cell completely stopped 3 of 4 headaches dead in its tracks PLUS stopped aphasia, sciatica, mental health, physical health, back pain, labido like I was 18 again. Just overall well being, feeling better. I can't explain it. I am a different person. Different outlook on life. What matters, what doesn't. Who matters, who doesn't. I value people not money. Life is different. Its better. A year ago prior to this I didn't have the physical capacity or mental capacity to drive to Toronto Ont from London. A 2 hr drive. Now we packed the house and moved across country. Hopefully that should give you the gist of how much better I am.
In 1 year from today. I had stem cell therapy, flew to Halifax with my wife for her holidays, Fell in love with Nova Scotia and flew home, sold the house and moved across country. Something I could have never done without this therapy. I would not even have been alive if it wasn't for my friend..FACT.
I am still sick, I still have a smaller list of health problems which I am still battling but I am LIGHT YEARS away from where I was. I suffer far less. I am very grateful my dad got to see me get better, Be happy and peace in Nova Scotia before he passed away last month. In fact, yesterday was his birthday. I know he and mom and looking down happy for us.
Since I advocated and created awareness for cluster headaches I read many many many claims of the word "cure" from fellow cluster heads. I know my statements above may come with skepticism. And that is good and welcomed. Proof is in the numbers. Numbers do not lie. 365 days cluster free.1 migraine in a year at the beginning of stem cell. Put that in your pipe and smoke that!!!
Many BULLSHIT claims on line from rubbing your temples to "drink more water". I've done them all including having my head drilled into awake for brain surgery. So this isn't a claim. These are FACTS. I had stem cell therapy by Dr. Calapai in NYC and I am in remission for 1 year. That's a fact. Each day I continue to be better is further proof this worked for me. After THOUSANDS of Dr visits, thousands potions, treatments this worked for me. I have a quality of life worth living. I now celebrate life. I love life. There is so much I want to do and see in Nova Scotia with my wife and family out here. I have no desire to end my life anymore. I never wanted to die before. I wanted to live but only if it meant I didn't suffer.
I can tell you Rock Bottom teaches you things that a mountain top never will. That health is the most important thing you can have. That people matter not money. Things I once loved and cherished are now an after thought. What matters doesn't and now what never mattered is most important to me. Helping others. I lost both my parents recently. There was NO U HAUL behind them. They took their memories and left behind what they contributed to the world. Money means absolute shit to me. I don't care how big your house is, your car. None of that means shit to me. How you treat others, how you give back in the world. That is what matters to me, And I surround myself with people who are just like that. Givers, not takers.
I look back at the last 15 years of my life. How sick I was, How terrible life was. How some people are just......in my past. I look forward to days ahead with my family here. Travelling. Exploring, Helping those in my community. It has been a helluva journey. Things are only going to get better. Even with this Covid 19. Kristen and I have big plans for the future. Life is good. We are happy and at peace. I still have 365 more days left with stem cell to get even more better. Stem cells double daily for up to two full years. I am at the halfway point and things are looking positive for me.
I am not the type of guy to scream" Hey I did this, go do it, It worked for me it will work for you". I know everyone is different. everyone responds to treatment differently. Everyone has their own case of the disease differently. But I will say Stem Cell worked for me and gave me hope.
You will be hard pressed to find a day in the last 365 that I haven't said I am grateful or told my buddy how much I love him and how grateful I am for what he did for us despite him wanting zero recognition from day 1. I love you brother, thank you for helping me. You are the best bud I could have ever asked for. Being there saving my life, the treatment and when I lost dad. You were there and continue to be everyday. I love you. Thank you Dr. Calapai for the treatment, thank you Redecan for the flight. Thank you to everyone who didn't care I was sick and still was my friend not the cowards who ran the other way. Thank you to my family here in Nova Scotia. You welcomed us with open arms and we still can't believe we are here. Thank you to my neighbours who welcomed us and took care of us during our 14 days in the house getting us groceries and everything.
And very important. My wife. You took the vows of better for worse when worse was all we knew. You were beside me for every brain surgery, every attack, every heart break, loss we shared and stuck by my side through all of it. Its not me who deserved the private jet, and the trip. It was you. You stuck by my side through all of it, When people ran the other way, you ran towards me. Ill never forget how you stuck by my side through all of it. Now its time for you to enjoy all the good that has happened to us both. Anything good should be for you not me. You deserve it babe. Grateful for you. We are here in our new home with Annie and life aside from Covid and loosing dad is pretty good.
Feel free to share this blog with cluster headache and migraine survivors. It may save another life. And potentially give someone a quality of life.
I dedicate this blog to you my friend. Without you I wouldn't be here, be better and have the life we have now. I love you.
I've had many say "my mom gets those, or I had one of those once". chances are, most likely not. Cluster Headaches affects 0.01% of the world. Approx 1 million people globally in what 7 billion people? We are a grain of sand in the world. Invisible. because its an invisible disease that unfortunately unless you are a neurologist you are not taking us seriously. Even a good neurologist can throw his hands in the air and say the odds of help are very slim. As my own neurologist told my GP. I was even told at the pain clinic after waiting 1 year to be told. Go home, there is nothing further we can do for you. The meds you are in will end your life sooner than later. We can no longer help you but if you want to join a support group on living in pain we can sign you up for that in a years time......
I needed that group when I first got sick, Not 15 years later. In 15 years I tried my hardest to live with this disease. Open a business and try to hide my disease. I tried dating, raising a son, being a son, being a friend. I fucking tried everything I could with this disease. Even a suicide attempt in Florida. Again hours away again in April 2019.
I don't know how many times I have heard someone say to me, try this. I did and then had 4 brain surgeries. Which left me with PTSD, a Brain Injury (TBI), aphasia years later, short term memory loss, cognitive issues reading and comprehending documents, instructions. Difficulty learning new information. And to me the worst part. A 4th undiagnosable headache that even to this very day they can not diagnose and struggle to treat. This 4th headache I am still battling as I write this. This headache, leaves me bedridden without meds. The meds I am on are meant for 5 days max use. I been on them 4 years. And they only give me 40% relief. As the years went by 40% pain reduction is the best they can do and what I live with to this very day.
This 4th headache is unlike my other headaches. Migraines can last hours to weeks. Debilitating, vomiting, pressure. No fun. Cluster headaches last 3 hours max and you can have up to 15 a day. The pain of a cluster heachache is indescribable torture. Tension headaches go away on their own and usually a simple Tylenol make it disappear quickly.
Today, May 16, 2020 is 1 year from Stem Cell Therapy I had by Dr. Calapai in NY. I have kept a headache diary. and tracked my headaches since the first day.
Overnight the first thing we noticed that my aphasia had gone. Aphasia for me was inability to get some words out when talking and stuttering. It was progressively getting worse everyday. Being able to speak normal was a blessing. Then I noticed my sciatica pain was reduced by 50% overnight and today is sitting about 95% pain free from sciatica. Sciatica if you have never experienced is a nerve trigger mostly by back pain. My l4,5 caused my sciatica pain. Now usually only happens driving in my wife's car. For some reason the seat triggers my back pain. I am very grateful for this to be where it is. Next. In 365 days I had 1 migraine, It lasted almost a week, It was around the 1st or 2nd month of stem cell. Since then I get migraine aura's. That feeling when a migraine starts. But it hasn't gotten full blown. Some cannabis usually does the trick. I rarely get tension headaches anymore. Most just go away on their own or a simple Tylenol removes it. Now, Cluster Headaches. The worlds most painful disease known to medical science. FUCKING GONE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Insert Hallelujah Music. Dance naked, jump up and down. Gone. NOT 1 fucking cluster headaches once!. Ive had some auras. Once I thought I was having the beginning of one and it turned out to be a tooth ache. But zero clusters.
To my knowledge, I am the only person in history who has successfully treated cluster headaches with stem cell therapy and been in complete remission.!!!
CNN are you listening??? Dr.Sanjay Gupta....this is HISTORY for the medical community. I know Doctors and medical professionals rely on stats. Well here is legit factual stats. 365 days cluster headache free!!! THIS IS HISTORY and hope for anyone suffering this horrible disease.
For well over 10 years I spent my time advocating, and creating awareness for this disease. At my wits end of wanting to die, I contacted everyone I could for help. Dr. Phil. Dr. Oz, Doctors, CNN's Dr. Sanjay Gupta. Anyone who could potentially help me with my headaches. With no help.
I had become good friends to someone who wants to be anonymous that reached out at my lowest of lowest. I was suicidal. I wanted to die. I had fought as hard as I could. Struggled as long as I could. Was told to go home from the pain clinic as their was no more hope. I had no quality of life. Life was not worth living anymore. I told my friend this, and he knew I was suffering badly. Except he offered HOPE. By Help. Something I had lost a long time ago. He offered me help from a doctor he knew personally that he personally seen positive medical results first hand from other health problems. At that point I had NOTHING to loose. I wanted to live is what most people fail to comprehend. I wanted to die. But wanted to live. All I ever wanted was to feel better. Not suffer so much. Have a quality of life. I realize I am sick. I realize certain thing sin life are over for me that I can no longer do and I have accepted that. But I tried and tried and tried with everyone for help. Who knew my help was going to come in the form a friend. A hero. My brother.(not sibling).
So I am off to NY for Stem Cell Therapy. And at this point i had nothing to loose and everything to gain. I ALWAYS was 100% positive with every doctor I met. I always tried what they suggested to me, Pills, surgery, You name it. I never said no. I even did magic mushrooms which did help for awhile relieve the intensity and frequency of clusters but stem cell completely stopped 3 of 4 headaches dead in its tracks PLUS stopped aphasia, sciatica, mental health, physical health, back pain, labido like I was 18 again. Just overall well being, feeling better. I can't explain it. I am a different person. Different outlook on life. What matters, what doesn't. Who matters, who doesn't. I value people not money. Life is different. Its better. A year ago prior to this I didn't have the physical capacity or mental capacity to drive to Toronto Ont from London. A 2 hr drive. Now we packed the house and moved across country. Hopefully that should give you the gist of how much better I am.
In 1 year from today. I had stem cell therapy, flew to Halifax with my wife for her holidays, Fell in love with Nova Scotia and flew home, sold the house and moved across country. Something I could have never done without this therapy. I would not even have been alive if it wasn't for my friend..FACT.
I am still sick, I still have a smaller list of health problems which I am still battling but I am LIGHT YEARS away from where I was. I suffer far less. I am very grateful my dad got to see me get better, Be happy and peace in Nova Scotia before he passed away last month. In fact, yesterday was his birthday. I know he and mom and looking down happy for us.
Since I advocated and created awareness for cluster headaches I read many many many claims of the word "cure" from fellow cluster heads. I know my statements above may come with skepticism. And that is good and welcomed. Proof is in the numbers. Numbers do not lie. 365 days cluster free.1 migraine in a year at the beginning of stem cell. Put that in your pipe and smoke that!!!
Many BULLSHIT claims on line from rubbing your temples to "drink more water". I've done them all including having my head drilled into awake for brain surgery. So this isn't a claim. These are FACTS. I had stem cell therapy by Dr. Calapai in NYC and I am in remission for 1 year. That's a fact. Each day I continue to be better is further proof this worked for me. After THOUSANDS of Dr visits, thousands potions, treatments this worked for me. I have a quality of life worth living. I now celebrate life. I love life. There is so much I want to do and see in Nova Scotia with my wife and family out here. I have no desire to end my life anymore. I never wanted to die before. I wanted to live but only if it meant I didn't suffer.
I can tell you Rock Bottom teaches you things that a mountain top never will. That health is the most important thing you can have. That people matter not money. Things I once loved and cherished are now an after thought. What matters doesn't and now what never mattered is most important to me. Helping others. I lost both my parents recently. There was NO U HAUL behind them. They took their memories and left behind what they contributed to the world. Money means absolute shit to me. I don't care how big your house is, your car. None of that means shit to me. How you treat others, how you give back in the world. That is what matters to me, And I surround myself with people who are just like that. Givers, not takers.
I look back at the last 15 years of my life. How sick I was, How terrible life was. How some people are just......in my past. I look forward to days ahead with my family here. Travelling. Exploring, Helping those in my community. It has been a helluva journey. Things are only going to get better. Even with this Covid 19. Kristen and I have big plans for the future. Life is good. We are happy and at peace. I still have 365 more days left with stem cell to get even more better. Stem cells double daily for up to two full years. I am at the halfway point and things are looking positive for me.
I am not the type of guy to scream" Hey I did this, go do it, It worked for me it will work for you". I know everyone is different. everyone responds to treatment differently. Everyone has their own case of the disease differently. But I will say Stem Cell worked for me and gave me hope.
You will be hard pressed to find a day in the last 365 that I haven't said I am grateful or told my buddy how much I love him and how grateful I am for what he did for us despite him wanting zero recognition from day 1. I love you brother, thank you for helping me. You are the best bud I could have ever asked for. Being there saving my life, the treatment and when I lost dad. You were there and continue to be everyday. I love you. Thank you Dr. Calapai for the treatment, thank you Redecan for the flight. Thank you to everyone who didn't care I was sick and still was my friend not the cowards who ran the other way. Thank you to my family here in Nova Scotia. You welcomed us with open arms and we still can't believe we are here. Thank you to my neighbours who welcomed us and took care of us during our 14 days in the house getting us groceries and everything.
And very important. My wife. You took the vows of better for worse when worse was all we knew. You were beside me for every brain surgery, every attack, every heart break, loss we shared and stuck by my side through all of it. Its not me who deserved the private jet, and the trip. It was you. You stuck by my side through all of it, When people ran the other way, you ran towards me. Ill never forget how you stuck by my side through all of it. Now its time for you to enjoy all the good that has happened to us both. Anything good should be for you not me. You deserve it babe. Grateful for you. We are here in our new home with Annie and life aside from Covid and loosing dad is pretty good.
Feel free to share this blog with cluster headache and migraine survivors. It may save another life. And potentially give someone a quality of life.
I dedicate this blog to you my friend. Without you I wouldn't be here, be better and have the life we have now. I love you.
Pain Free Wishes to anyone trying to make another 24
That is absolutely fantastic!!! I don't have them but my buddy does and has been suffering for years. YAHOO!!!
ReplyDeleteI have a Canadian family whose son is chronic who would love to be in touch with you so they can learn more about this option. Please contact me Tom.
ReplyDeleteContact Dr.Chris Calapai https://drcalapai.com/
DeleteThanks.
Delete