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. Growing up. I was always led to believe that drugs are bad for you and getting high was for Cheech and Chong. I grew up with probably the only set of parents left who lived through the 60s and never tried drugs. And to this day, still have not.
I saw in my early high school days the affects of drugs and alcohol. How it made drunks miserable people and how drugs ruined peoples lives. I was always working and putting money into my car so I never had any interested in partying in high school and I felt I had something to show for vs hangovers and being broke. Addiction runs in my family. I knew at an early age I had little interest in booze and less if any in drugs.
In my adult years I barely drank and there were some years Id go almost 10 years without a drink. I was never an alcoholic. I think I have been drunk maybe 10x in my life. I am being overly generous with that number. Stoned. Never. I just personally do not like being in control of my own life at any given time. Probably why I took getting sick so hard. It took my control away of my life.
At any rate...I barely drank...and when I got CH....it brought them on. I was single at the highlight of my attacks and loved taking my hot rod out but never ever would leave it at the bars so I had maybe 2 beers back in my 30s. I was fairly new to the single scene and very uneducated about alcohol and CH.
I did find that alcohol brought on attacks instantly. The neck of a beer would instantly give me an attack. Being at a bar trying to meet people and having an ice pick in my eye was no fun. The very last drink of alcohol I had was Jan 1,2009. In December I was suicidal. I flew to Miami and spent the week with my son and folks to get away from work. It was new years eve. I was in Miami planning how I would die. I got rip roaring drunk....by myself. I gave my last $ to a homeless guy eating a green banana. Instead of taking a taxi, Igavethe homeless guy my last money.And started to head back. It was 1am. Walking and hoping I was going to get hit by a car,mugged,robbed and was hoping shot. I ended walking back safely back to the hotel beside our condo and they had a party going. Free booze. I had about 18 shots and countless drinks. I drank myself sober. For being nicknamed 2 beer Tommy it was quite entertaining. About 4 am I stumbled in the condo,and tried to sleep. Within the hour and for the next 12 hours on and off I had a series of brutal attacks that would make most people leap off the 35th floor we were on. The condo was large enough and private sleeping quarters were far enough away but not far enough my parents could hear the utter agony I was screaming from my attacks. My parents balled their eyes out and said they had no idea it had gotten this bad.
in 21 days....I had 21 hours sleep and was working 55-60 hours a week.
I finally fell out of bed after attacks and the odd 30 min here and there sleep.
My dad finally agreed I needed to quit my job...and I did and gladly wrote a resignation email. Within 2 days my attacks had lifted dramatically. Not stopped. Still averaged 5-8 a day but a huge improvement.
Even at my lowest point...I had no even considered drugs. Nor was i educated enough on them.
I came home from Miami...funny.Don't laugh....I almost died. not by choice this time. LOL. The house was full of carbon monoxide. I had no idea. The water heater puked and only by chance the fellow sent a gas guy over and his machine tested the level in the house and it was lethal. Said in his 20 years of working for a gas company. No one was lived being locked in a house for 48 hours and survived. He said get some fresh air and go buy a lotto ticket. Which I did...no $ though.
So I decided to run my own business. I sold my kick ass motorcycle and invested every cent I had into the business with help and support from family. I lived my dream of self ownership of my business. Did it as Elvis would say....My Way.
My attacks never stopped. Despite,the business. I was able to hide them 90% of the time or made easy believable excuses where I was, why I had to close suddenly or leave because anyone that knows me....Knows my son is and always will be #1. People knew. Only a very small hand full knew I was sick. I never sough pity or anything. Just wanted to try to work.
The older I got the far worse and harder it became. A year after closing my business. I had looked into surgery. Prior to my surgery and being a tad more educated on the disease I have had numerous people contact me on my YouTube videos about LSD and Marijuana. My whole life"dopers" have been telling me"hey ma,.pot will help" and all I could see in my brain was a stoned Dorito eating Cheech and Chong saying it. I dismissed every single offer of medicinal use of narcotics, Pot,LSD etc. In 2000 I had gone to school t be a police officer. After a year of graduation college I got sick and kiboshed that idea of being a cop. I am mentioning this only because in my brain...drugs are bad an illegal. Its like telling me the sky is pink when I only see it as blue.
So about 6 months prior to surgery going full swing. As surgery is no "hey Ill take a large deluxe pizza and Deep Brain Stimulation". These things take time. Since the disease has NO CURE. I have time.
At the point of surgery. I had succumbed to the fact I am disabled. I am sick. Unable to work no longer. Incurable,unbeatable and to that day...untreatable. My life as I knew it was no longer healthy.
So here i have these friends in my life who happen to be sick as well. MS to be exact. Now in Ontario Canada. Marijuana is 100% legal by prescription ONLY, if you have MS or Glaucoma prescribed by a phyiscian. No, going to a dealer is not legal if you have MS.
Anyway, a friend offered me to try pot to get high and see if it works. He offered to get 'lit" to see what it feels like. I argued with him stating I have had zero interest in getting high and have zero interest in trying it. And that if I did try it, it would only be for medicinal use during an attack.
I spent 2 months researching the Internet. Since I know NO Cluster Heads personally. I had to research. What I found was a 50/50 split. 50% had some luck the other said the pain is excruciatingly worse. I though how could this be possible. My attacks are the most painful on the planet...how can hey get worse??? So after serious thought and devotion to being against recreational use I discussed it with my parents at the time. And in fact my father who is far more anti drug than I am concurred and said try it. We don't want to see you in pain any longer. They knew with my policing back ground, my strong anti drug beliefs that it was 100% pure medicinal. So I did...
I got a joint from my friend with MS. Had it sitting in the house a few days, Maybe a week. Don't remember. It was about 3am and woke up with a brutal severe KIP 10 attack. It took everything in my power to open the window (yes pot smells like absolute shit) and fire that baby up. I was a smoker at the time. I had no idea how to smoke it. Not a clue...honestly. So I inhaled 3/4 of it, held it as long as I could. Butted what was left and waited a few seconds. Within seconds it was one of the top 2 worst attacks I had of all time. If there was a gun. I would have pulled the trigger. No paranoia feelings or nothing. I don't think I was stoned and even if I was the pain was so incredible sharp. That was the final end to my remote hopes of ever doing that again. I told my folks that day as they heard me scream all night what I did.
So in time I have heard countless times about the use of LSD, Mushrooms and Psyclipsybans for Cluster Headaches. I have dismissed all of those thoughts in the past.
IN that time frame I met my beautiful wife who just so happens to be in recovery. 8+ years and counting clean. To me a god send. For me a blessing. Here is a beautiful woman who had a problem,acknowledged it and fixed the problem. For me hating drugs and alcohol was a perfect fit.
Over time reading replies on my YouTube videos i have heard countless times people ask, mention,dictate me to use/try drugs from pot to LSD. I monitor each reply. I will never accept peoples opinions or suggestions for medicine or drugs simply because I am a survivor not a doctor. nor are the people mentioning it. I have always felt treatment best suggested by a licenced and trained physician. Not some person behind a keyboard I have never met or know nothing about. Comments on my videos are to be supportive and constructive of the disease. Not insulting.
I been called everything from a hero to an idiot. People call me an idiot because I chose Deep Brain Stimulation vs. LSD. I been called a hero which I am not. I am called a hero because since I lost my vanity I wasn't afraid to display myself publicly having an attack. My wife and son are the heros. Michael J Fox is a hero. I am no one special. Not yet anyway.
My choice to have brain surgery vs drugs was very simple. My body my choice...last time I checked I didn't need strangers opinions and views to have surgery. My surgeon didn't ask me what YouTube users thought. But for some, they don't get it. They can not accept I wouldn't try it. Just arrogant, rude,unkind thoughts, comments and opinions. But hey, everyone is entitled to an opinion....when asked.
I really didn't think I needed to clarify to strangers that my choice not to use drugs, my wife is in recovery and not to mention my sons 17 yr old cousin was murdered by a drug dealer. But the relentless messages I get, this blog is for you. Perhaps now people may respect my decision. may understand that my wife attends weekly meetings still, my son is vulnerable to that in school and we choose not to.
I have nor will I condemn or condone the use of drugs to anyone sick. As of recently Dr.Sanjay Gupta whom I admire just did year long subject research show on Weed. It educated me so much I ate my own words thinking that Marijuana is useless but its not medicinally and that my whole life I have dismissed pot for medicinal use. I admit I was 100% WRONG. Now that you have read I have tried it. And you know my thought behind it, I hope you respect my decision not to.
With this being said. I am a full member on a website dedicated to helping others with the use f psycilosiban mushrooms. I am in support of the members seeking relief and will even contribute to the site financially when I can. The difference is no one there is getting "high" for anything other than finding relief form pain.That I commend each person for doing. In fact in Germany doctors and scientist are researching the medicinal form of LSD without the "trip" in Cluster Headache patients. Its called BOL-145 i believe. The problem is doctors and scientist know it works. But pharmaceutical companies are only interested in making a drug that makes BILLIONS not a few million to help a handful of us world wide, which is truly sad. We have the worlds most painful disease on the planet. You would think that would justify itself.
I have had long talks with my wife in recovery about the use of LSD. She supported me 100% if I got relief and as well would not fault me. I discussed it with my neurosurgeon and GP. I agreed when and only it becomes legal and synthetic form (without the trip) that I would try it.
They just proved giving marijuana without the THC and only the BCD to a 6 yr old girl with Gervais syndrome that it dropped her from 300 seizure's a week to 1 a week. There is proof pot and LSD works for some people. And when BOL becomes available by prescription I will try it. But until that day comes I will not. Call me an idiot, stupid, stubborn. But I live by a set of values, morals, and beliefs that allow me to have a clear conscious to my son, stand over his cousins grave and high 5 my wife at her meetings. Until then I will be a survivor of the disease, please kindly respect my wishes.