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Posts posted by ClusterHeadSurvivor

  1. OMG....as a non Buster, but BOL supporter ( I know,hypicritical isin't it), we are or should be here all for the same reason.....to support one another.

    I have blogged and explained my reasoning why i dont.

    But I am the first to support you guys in your journey

    And who the F*CK am I to tell another perosn how to live and treat themselves? I am not. No one has the right to tell me how to live my life, nor do I.

    People, its about supporting eachother in many ways. Its about uniting as a whole because ONLY us, and us only truy understand this affliction we carry.

    Its the cross on your back. Its the end of our lives as we live with this day in and day out.

    Some have to shoot preverbial dirreah out of there mouth and think they know how another should live.

    No one has the right to tell me what to do with my body nor do I have the right to say what another should try and use.

    This infuriates me.

    I praise HIPSHOT for doing the show. He is a man of courage and admiration in my books.

    This perosn should let sleeping dogs lie...

    my 2 cents.

  2. until Aleve gel liquid capsules came to Canada. I made a monthly drive to Michigan....to get them

    They really halep me for very mild attacks with a can of coke.

    I am the last person to ever recommend anything to anyone...but that helps me for the slightest of attacks.

    If BOL 145 or whatever they call it....comes by a script. Im first in line in Canada

  3. Last night was habitual...12:36 am attack...screamed, banged...slept. Woke up. Coffee,shower, took soon to school. Haad appt for dentist.

    I generally do not take freezing needles well. Usually have to tripple if not quad my dosaged. When I had DBS and they put halo on my head. Instead of 4 needles. It was 21. Thats just me.

    30 min into it, drill comes out...i start crying. When I had DBS I was awake. DBS is a hole drilled into my head when they insert and electrode into my hypothalulous.

    anyway. I sucked it up and continued for another hour fairly ok. I explained to dentist and assistant it was flashback but id be ok. Dentist was very empathetic.

    He said ok we done the 3 fillings now we polish. Out of the blue I panic. Room spinning 100 miles an hour, I feel I want to vomit, pass out. Worst feeling I had since being awake during brain surgery. Its so hard to explain but something wasnt right. They tilted the chair back more to let blood run to my head but it felt worse. I tried twice to sit up. Bad move. Frig...am I gonna die. My eyes rolling back into my head. Is this it? WTF happening to me?  Scared to death...dentist calls me ambulance. Dentist office is old house converted to practice. I am on 3rd floor down spiral stairwell. Two skiny paramedics show up and see oh crap I am well above the 260lb mark. They get a run down of my vitals. Tell me sugar very low.(sorry dont eat breakfast), and got me ina  chair. I start dry heavng trying to puke, I have my eyes roll back. Dentist explains I had DBS...oh he has Parkinsons...umm no he has Cluster Headaches. Huh what. Its wired to his brain? He looks at the tattoo on my arm. says wow. never heard of that...

    5 hours later at hospital, check all vitals, blood work bla bla bla...im ok ...oncall ER Dr comes and says...I dont think your depressed. I think you have PTSD. As my wife and I explained last week watching NIP TUCK that I had sorta similar crying freakshow during brain surgery spisode drilling into someones head...flashback...she explains...(excellent bedside mannor) how its normal and ok and stop trying to be a macho man and get some help....so I emailed my neuerosurgeon and asked for a referal.

    Hard for me since I blog about being strong...being positive and trying to help people globally look outside the box. That I am human...Strong like Bull Dumb Like Ox.

    Well Im home now. Still very light headed, dizzy and nautious and scared as hell.

    Maybe the next attack I have make me feel like my old self again...what a friggin day.Oh and my back is out again too.

  4. Everyone is different...

    Prior to brain surgery I had a chiropractor offer me free adjustments as he swore he would "cure" me.

    Didnt help one bit, I also had physio which did nothing for me.

    Everyone is differrent. However Ill never  turn down a massage from a beautiful woman.....my wife.

    What works for some may not work for others.

    But ya never know until you try

  5. B.G. What a heartfelt warm story.

    I really enjoyed reading that. And the pics too are great. Beautiful people.

    Personally I think I would be just as overwhelmed.

    I only ever met one former CHr who was episodic and they disappeared on him 10 yrs ago. When he met me. He saw the horror in my eyes and said nothing but OMG I feel so sorry for you.

    I have only heard of 2 others in my city of 350,000 people. One who is 100% recluse(wouldnt even meet me in fear of having an attack) and the other a wealth former businessman who retired early. He wont meet me either.

    It takes a strong willed person as yourself and others to attend an event.

    Makes me smile to know that all of you bonded, shared and learned from one another.

    I doubt Ill ever be able to come because of disability and the expence but glad I can come here to read about it.

    Thank you so much for sharing....

    My wifes recovery is the same...they HUG. When I first went to a few meetings with her in NA, I thought...hey dude I dont even know you...and they hugged me. But now...I get it...Hugs Not Drugs.

    So I am sending a virtual hug my way to everyone.


    thanks for sharing and keep the stories and pics coming.

  6. I love seeing SMILES from all the people. Seeing as have all had our share of frowns...seeing everyone smile lifts spirits.

    This week my wife celebrated 8 years in recovery and he sponsor 10 yr anniversary....all smiles there too.

    again sending all warm wishes to everyone.

  7. thanks for the awesome pics.

    kinda suprised to see alcohol in hands as its a trigger for many

    Please pass my best wishes to everyone...a great big hug from me....wishing everyone a sincere pain free time.

    Blessings all my friends

  8. ClusterTown. I perosnally am not one for recommending medicinal treatment but let me say I feel your pain. I am very sorry you had to suffer such long attacks. I am chronic and I have had countless 3 hour attacks.

    There is a great amount of information people are advising you with, perhaps consider some of them, in solidarity we are all here for the same reason. We suffer we survive,we support.

    Wishing you PFD.

  9. Today is World Suicide Day.

    Today I will be at my local park supporting those.

    I will be there for those who are no longer with us.

    I will be there for those who constantly struggle with their demons, pain and mental illness.

    Dec 24,2011 I was contacted from a gentleman while I was in church Christmas Eve. My emails from YouTube go directly to my email to my phone. I though to myself...sheesh all my friends know im a christian...why email/contact me in church. Anyone who knows me knows thats where I would be.

    After church I got in the car. Started to read an email from someone who say my videos on YouTube. Said he couldnt live any longer, watching my video was like starring in the mirror. It was a suicide note.

    I rushed home as fast as I could. I am not pc savy. But I tried eveything I could to reach him. I did everything I could but like hotmail or any other account. You can say you live in the states or canada but actually live elsewhere. This person could have been female or even my neighbour for all I know. There was NO WAY of me tracing the person. I tried in depseration. NOTHING. I emailed everyday for almost 2 weeks. Nothing. They never logged back into the account neither. From that day forward, I decided to help others best I could.

    I been contacted a second time. A guys best friend. Said his friend had given him my account to watch the videos to try to explain what he was going through a few days before. He committed suicide. His friend emailed me and thanked me for making the videos explaining that awareness must be done because people do not beleive the life we lead.

    and then there is me. Dec 2009 I was planning my funeral. I was seriouslly in December debating what was better for my son. A son without a dad, or a son with a very sick dad. I took a trip to Miami praying I would be mugged, murdered,ran over by a bus. I relaised I had to change my life, my way of thinking. My faith wouldnt allow me to heaven(NOT A DEBATE PLEASE) and my son would be without a dad. I choose to live last second. I told no one of my plans. There was no cry for help. I was planning everything down to will, suit Id wear, and who attended the funeral.....FF to now. Back then I would have never thought in a million years...Id be re married,have the wonderful life I live now and how blessed I feel. Yes like any CH'r Im still very sick, still get chronic CH and lived through 4 brain surgeries...I am glad I lived.

    I also personally knew someone who committed suicide and another who tried.

    Suicide is real, it is as real as this disease. There is no class of people with jobs, income, education, age or sex or background. It happens everywhere. Rich, famous or the opposite.

    Today I walk and support those who are suffering,and who have lost their battle. Today I pray for those and support those.

  10. Hi, I am sure I can speak for most who like myself are unable to go to Chicago.

    Let me say I am and others are there in spirit and support.

    Hope there is some way people make videos,upload them to YouTube and link to here for us that can not make it.

    As I have said before. I do not bust but support others in their fight to stay pain free. I think Bob Wold and many others truly need a high five, pat on the back and a hug for so many.

    I wish all of you a safe and painfree conference.

    If there is shirts avail or souveniers. Ill take a double XXL. or anything. PM me.

    Please accept my blessings and support for the cause.

  11. it was just done last November. It can take years or never with ongoing adjustments. I usually see my neurosurgeon very 3 months. He feels that gives it sufficient time with programming. Since I am the 2nd in Canada and the 17th in the world to have it done at the time. Its a roll of the dice.

    At present. 10% improvement.

  12. George is interviewing Lisa Kudrow (Pheobe from FRIENDS).

    George like me is a Canadian.

    WHich some of you may not know is that Lisas dad and brother is a nuerologist and specialise in Cluster Headacaches. Lisa also studied Cluster Headaches.

    She worked for her dads practice,now run by her brother for 8 years. If anyone in Hollywood knows CH....its Lisa. If anyone respects CH its Lisa.

    Tonights interview is different where apparently they will be discussing before and her early career and her possible career choice prior to acting.

    I recently wrote Lisa Kudrow a letter and mailed it a few weeks ago. I have not heard anything as of yet. I asked her to support/help me contact CNN in doing a report on me and CH. I am confident if she actually reads it that she will atleast acknoledge it but like many famous,it may be dismissed as fan mail or discarded by someone else. I hope not. I have also written to Gene Simmons.And Jay Leno(whom I have met, toured his garage and had private meeting with on the Tonigth Show).Gene is a huge silent supporter with many diseases and charitites.I saw Kiss a couple weeks ago here at home, tried giving a letter to his roadie. He accepted it but never heard nothing so I mailed one to Genes home.(drove past when I was there meeting Jay) and have not heard from Jay. Jay is the largest cancer donated on the western seaboard. Most don't know. He donates MILLIONS annually. Jay does alot for charities. In the letters I explain I only ask for acknowledgement and a call to CNN. Sometimes a more famous voice is better than a no bodys like mine...

    Also in addition I recently wrote to a news anchor Peter Mansbridge. He is basically Canadas Anderson Cooper,Peter Jennings.He works for CBC. He lives close to my house. about 30 min away. Anyway, he emailed me back. He basically said. He never opens mail that isnt a bill as it gets screened at CBC first and he did and will be personally handing my story to CBC for them to review it,they will review it, determine if its newsworthy and if intrested will contact me. No guarantees but a step in positive direction.

    Within 20 minutes I recieved an email from a young movie maker in Toronto. He has seen my videos, read my blog and wants to do a documentary/movie on me. Said it would take months to a year to complete but because of distance may use me as a advisor but interview me. He said he wanted not just to capture my disease but how I choose to live my life by being proactive and helping others vs suicide etc.I told him I would think about it because I advised him my chances of being on CBC and sometimes TV wants exclusive rights and I didnt want to screw things up but I said I would hep him either way.

    Then last night I was tweeting and I have Dr.Sanjay Guptas account on mine and his producer,writer was online taking questions....I sent her my link to my blog and she read it and replied...said she would continue to read it...and like eveyone else wished me well and hope i get relief.

    This sudden noteriety with my continued efforts are finally paying off. I hope to make it on the news to discuss what we and our families live with on a daily basis.

    I may have a better chance than some because of the 4 brain surgeries I have had. Whether they internview me or someone else...it dont matter...it needs awareness.

    I hope tonights show with Lisa, that she will mention CH.

    Ill keep ya posted if anything arises with my efforts and TV.

    read Lisa's biography under early life


  13. I am Canadian. In Ontario to be exact and I am from BC.

    In Ontario you can get marijuana prescribed to you if you have  Glucauma(prob spelt wrong) or MS and then it will come in a form of pill etc.

    I have even discussed BOL 145 with my nuerosurgeon and doctor. At present there is NO LEGAL shrooms,pscylio or anything legal. In Vancouver you can go to pot cafe and not be harassed. Posession in BC for pot is miniscule. DOnt care. Even in Ontario being caught with a joint will only get you a fine and not arrested.They will take the joint and fine you. Its when you have over 5 grams it becomes possesion for the purpose of trafficking.

    LSD is not permitted anywhere in Canada to my knowledge...

    and I went to Police College in 2001. Unless things have changed....Dont move north looking for it legally.

    Also have a fat chance finding a new doctor here. Waiting list is 2 yrs long...walk in clinics take you but do not prescribe narcotics.

    Hope you find relief.

  14. Jeff makes a fabulous point.

    On my blog I have advertising which goes through my YouTube videos. It helps generate revenue. One of the ads shows a hospital doing brain surgery above a photo of me after brain surgery....LOL, Makes me laugh...

    If I remove my ads. I wont make $. Its only taken me 4 years, 200,000 views to generate $103 revenue which I plan on using to donate to CH anyway.

    I am on car forum sites aswell. Its the same thing...everywhere.....just ignore it. Excellent point and I agree.

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