Let me first tell you that June July August 2014 was the worst months of my cluster headache career in over 9 years chronic.
For whatever reason in those months my attacks had not only increased in severity but longevity and frequency. My usual 1.5 hour attacks were now 3 hours each on averagely and over 90% were kip 9 or 10's. Meaning I had broken yet another headboard and yet again broken many blood vessels in my face from repeatedly punching myself in the face. Not seeking pity. Just stating the facts. Had anything really changed in my life that cause my attacks to increase or get worse? Perhaps. My wife lost her job and worrying about my wife's well being is always my concern. Finances being another. But KARMA has a way of coming back and we will be victorius. I truly believe in KARMA. I was able to see it first hand this summer. It was bitter sweet ;)
I had reached a point not only in my physical well being as well as had reached my own breaking point. The last lime I seen my surgeon I had mentioned again that " Busting" is becoming a closer and better option. All my surgeon asked was that I give it a couple more months. As much as I respect and think the world of my surgeon and believed 100% in my surgeon the lack of sleep deprivation, fatigue and wear and tear had taken its toll on me after 9 years. He programmed me, my neurostimulator. And said see you in 3 months as usual. It was about 2 weeks later I said I can no longer take this anymore. Not suicide but psychedelics was now a viable option.
I had tried every known medicine to man for Cluster headaches. Everything. Seriously I did. They don't do brain surgery for people of you haven't exhausted all resources available. I knew about psychedelics prior to brain surgery and if I scroll down and read my blog titled "Drugs My Choice" it will make scenes my reasoning behind my decision to have brain surgery first. I really advise you to read it before passing judgement. I wrote that particular blog because of ignorant cruel comments left on
my famous Cluster Headache Ontario video on You Tube that has 250,000+ views.
Because I had my 4 th brain surgery 2 years ago and was being reprogrammed on a 3 month basis and had what I believed a fair and honest go of programming and because I had zero remissin in 9+ years and my attacks have gotten far worse and more severe it was now time to consider what I had been prolonging all along. It was inevitable.
In the last few years I haven become friends with people globally. I had reluctantly made a Facebook page but made one directly made for my life as a cluster head. Not me the car guy and who I grew up with bla bla. I had become friends with Dan X not only have I watched his video on National Geographic 100+ times I researched and researched as much as I could. I had joined ClusterBusters a long term ago and had made it known my choice not to but still supported their cause 110%. If you notice in any of my videos or FaceBook page or. Twitter or anywhere online I speak I never tell people what education to try or take. It's just not who I am as a person and in my opinion I honestly feel those decisions are best feet between yourself and or my our family physician. I never felt some for their choice to seek pain relief. I don't tell people what to do or how to do it. Nor do I appreciate others telling me how to live my life. I have never once told some to have brain surgery or bust or anything.
I sat my wife and son down and asked how they felt. My wife had suggested from the get go to try it and supports any decision I make. My son is as against recreational drugs as I am. Having lost his cousin to being murdered by a drug dealer he knows and sees what I been through in 9 years and only wishes me to be pain free. He knows that it's a medicinal decision and that we both or all against recreational use of any drug. I will admit. He wasn't fond of the idea. But if at any point my wife or son said no. I wouldn't have.
If you haven't seen my friend Dan on National Geographic, about Cluster Headaches I highly recommend it. Dan is a clean cut well dressed god fearing man. A business owner. A husband to two great kids. Respected member of the community and a kind genuine person who cares and spends his time helping others. I am not only a fan of his. I am proud to call him a friend. It was Dan's video that helped me decide. I lay 90% of my decision based on Dan. 5% on Bobs education and 5% on my family. Bob is the president of Cluster Busters has helped me by educating me and i am his student. ,I know saying 5% of my decision is low but in all fairness it's the same as my family. My respect for Bob W goes way beyond any measure of how I can describe his relentless efforts to help others. This man inspires me everyday and should be praised at any given chance whether you Bust or not. He is one of us.
This decision wasn't easy for me. I had alot more to cosider than most. My family being the number one of priority. My wife and son mean more to me than myself. I have always put them before myself. It's just who I am. Being really happy in my marriage and secure is a huge plus. I really have such an incredible wife. Understanding. Compassionate. Giving. Supportive and loves me. I been in a really toxic relationship before. I now know what a wife should be. Marriage is great. My son. He himself has ongoing medical issues. He hates seeing me suffer. He has seen more in his 15 years than most have seen and or done in 50. I can't begin to tell you how proud I am of the man he is becoming. His decision to support me was less scary than brain surgery but supportive just the same.
After speaking with my wife and son my next conversation was to be held with my folks. My folks came to Canada with $25 and my brother. Nothing else. They grew up in the 60's avoiding drugs and raised me to not try drugs. I sent them the video of Dan and Bobs 2013 conference and my dad emailed me and said they would support me and since Dr. Sanjay Gupta's CNN video on Weed my folks have opened their eyes to alternative treatments.
I got their blessing. Which their respect meant more to me than anything.
I then called a dear friend of mine a police officer. We had worked together before I got sick. He is a Christian like me. A good guy,father and husband with a good head on his shoulders. He knows how sick I am and what I been through. I sent him Dans video and some info and asked to meet him for coffee. I am not sure whether he thought to have coffee whether I was wanting to ask for a get of jail pass or his approval. I sat him down and explained my intentions as a friend and he said "stop being a prisoner in your own home". He also knows I am the squarest guy he knows as I don't drink smoke or do recreational drugs. He wished me nothing but the best.
It was then up to me to ask,ask and then ask as many questions as I could about what I was about to do for the first time in my life. I had managed to obtain some medicine and my first order of business was to detox my body of certain medications. I have irritable bowl syndrome and exzema and arthritis in my lower back and other headaches so I had to detox. One medicine for my IBS prevents me from numerous washroom visits and works very well. It's cheap and does a great job. But I had to stop taking it for this process as it is a blocker. Since this medicine is taken once every 5 days 3x which meant detoxing for 5 days and not being able to use the medication for 20 days meant I had to load up on toilet paper.
Within that morning of not taking my medication for IBS for the next 20 days of detox and treatment meant I averaged 15-20 #2 bathroom visits per day. I drank pepto at a rate of 2 bottles per week.
My 1st treatment I took at 530 in the afternoon watching TV. I was nervous as all heck. Not knowing what to expect how to deal with it. Being a virgin at this and 42 years old it is quite scary. But I was home. Safe and with family. I waited about an hour and nothing happened. I was starving and ate a grilled cheese. Bad mistake on my part as it will slow down the affect. I found out after you must wait 2 hours before and after to eat. About 2.5 hours into it othe affect started to happen. Yawning. Vivid colors. One giggle session and tiredness. That was really it.
Sadly I still got attacks after my first dose. I but I knew I had to follow through and was going to give it s fire go. I had also shut off m pacemaker/neurostimulator that day to give my results a fair honest go.
I was still logging my attacks. I went along. I had to wait 5 days for my 2nd treatment of medicine.
Day 10. 2nd treatment. I said to my wife since I was so sleepy that I sold take it at bedtime and go to sleeps and she said you will not sleep. I didn't listen( ask usual). So I took my dose at 11:30pm. And I was so tired and was certain I'd pass out. NOPE. Not even close. Within 45 min the room was pitch dark and I was hallucinating. It was not enjoyable. I ended up turning the tv on to focus n something. I was awake the entire night. Had zero sleep. I stayed up that day too. I do not nap.
Again after second dose still getting attacks. I kept in regular contact with Bob and Dan with my progress. Kept re assuring me things will happen in time.
I was still getting attacks. I wasn't skeptical.
My last and final 3 rd dose was aug 18. This time since I had some experience with the medicine and side affects I said to my wife I'll putter in the garage and keep busy. I took my dose at 930am. My son was at school and my wife inside. I sat my arse down on the garage floor and started polishing the wheels on my wife's car. Within an hour the mess kicked in. The clouds white as white can be and the sky so blue. Almost as their was a flashlight behind it making things brighter. No giggles.
The wheels sure looked shinny. I went in the house to use the washroom for the millionth time and at 2:30 pm when I came outside the affects had gone. Great I as looking forward to the results as apparently the 3 rd and final dose is the"sweet spot". And taking my IBS meds and Not going to the washroom 18x a day.
First it was 24 hours that passed, then 48 then 72. It's now September the 11 th. Almost a month remission. In 9 years + I have never had remission. Not once. 90% of my attacks happened in 12 hours or less time span but some in less than s 24 hour span. This has never happened to me once, ever. Not even after brain surgery.
My dad came overcouple weeks ago and couldn't believe the results. He was so happy. He asked how I felt and I said I am scared. He asked why. I said because I know it's going to happen. It's like a ticking time bomb in my head. This medicine is not a cure. It's a band aid. A big freaking band aid.
I been having these attacks for 9+ years (July 25,2005) and you just don't forget what has happened to me. What is has done to me. The loss of my health. My friends. PTSD,My career. Relationships. The nearly 20,000 hours of my life taken from me. You just don't forget that. That just doesn't change because I haven't had an attack for awhile. Maybe in time dad things will get better. I have had so many side affects from brain surgery. I still deal with those things everyday. I still fear going to sleep.
My next medicine day is Oct 7, I pray that nothing happens until then. And I also have 9+ years of sleep to catch up on. A present I am dealing with a severe skin Itching which is causing me to wake up and itch until multiple layers of skin is gone. Sitting in dr office ad we speak typing this waiting to be seen.
As for now I am attack free. It doesn't mean iam cured because there is no cure. But it means for now I will have to use this alternative treatment to try to live as best I can. I owe so much gratitude to my friend Dan and Bob. For their patience and understanding. Without them. This wouldn't be possible.
I will continue to advocate this disease best I can. Educate someone everday of my life. And help anyone I can and look forward to meeting all of you in Nashville for the ClusterBusters annual conference.
Please do not misunderstand what I am trying to convey. I am extremely grateful for the opportunities that i am given and I and truly blessed that this medicine is working at this present time. But at no means does it mean that I am ready and willing and able to go back to my old life working etc. this disease has sucked the life out of me mentally and physically. I pray in my lifetime s cure is made or BOL is made a medicine to help us. But for now I will try to live my life best I can without wanting to die and put a bullet in my head. I will try my hardest to inspire others to live. Love life. Continue to be blessed. Raise my son with values, principles and morals. Raise him not to be a coward and stand tall be proud of whom you are. And love and honor my wife. Without her I'd be lost.
I'd like to dedicate this blog to Bob and Dan. Two very special friends to me. Forever a student of Bob. Supporting the cause and Dan. Your faith, belief and morals shine through you Dan. Blessed beyond words and continually giving back inspiring me to be a better person. You have treated me better than any friend I ever have had. God bless you both. And thank you.
I'd like also to the my wife and son. Thousands of nights I have woken you up I am so very sorry. I'm glad you have had almost had a full month of not being woken up to me screaming at the top of my lungs and breaking headboards and giving myself black eyes. You guys deserve the sleep so much. For never being short with me. For never complaining I am sick. And knowing full well l will still get these damn attacks in my life and you chose to love me unconditionally. To my ex friends the cowards that couldn't even send me a get well card, a text,email let alone visit me in the hospital in the 30 days I layed there after my head was drilled into. Your cowards. I forgive you but your still cowards and I pity any friend you have that gets sick. Karma is a bitch. Advice for ya. There is 3 parts to an apology.
1. Admitting you are wrong
2. Apologise
3. Making it right
Most never do number 3.
Yet #1 hasn't happened.
I know these treatments I undertook is not a means to an end but it's the beginning to some relief. Some sort life. I do what I do because my purpose in life is far greater than me. Despite being wronged beyond words I forgive. Move forward and learn to trust again. I have learned I prefer to help a stranger with no chance of being anything returned than counting on a friend. It's better to give than receive ands tell I been receiving which is really hard to take. I am not othe kid of guy to take. I prefer to give. But it's nice just the same. Strange but nice. My joy in life is seeing others happy. If I can educate one person a day and make one person happy than I had achieved my goal for my day.
You are not measured by what you have in life but what you do. No one will visit my grave and see the cars i have owned. I pray they will reminisce about the things I done for others. To help others. I hope to leave a positive footprint on this earth.
To my online Cluster Head family and the non CH rs who are advocates. Wow. You are so important and special to me. Your family to me. Althought we have never met you all play an important roll and part in my life. Sometimes we agree to disagree and done with mutual respect. But it's that. Respect. Think you all. I learn from you. The haters make me stronger and encourage me to want to reach out and help more. Because the haters are a reminder how dark this disease can be. It's not personal. the advocates who have friends or family members heo have CH. people like Cluster Ann Marie blow me away. The relentless efforts of her and others who advocate a disease they don't even hav but are affected by it. These people deserve so much praise and appreciation. Wow. I'm just at a loss for words for your kindness and sincerity. Your spouses are truly blessed with your presecene. I am proud and honored to call you a friend.
This blog was a long but explanation for my decision and trials and tribulations was felt necessary to explain. I also wanted to give an update to those who know I have " Busted " And my results prior to the Nashville conference.
For those that follow me on Facebook know I try my best to be positive everyday and when I say have a pain free day I sincerely mean it.
Blessings and thanks for following my journey.
God Bless
No comments:
Post a Comment