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Posts posted by ClusterHeadSurvivor

  1. Anyone here have CH Tattoos??/

    If so please post your pics.

    If you have pics of CH tatoos, please post them as well.

    As much as I appreciate your other art as I am inked myself.

    Please lets only post CH INK.

    I want to do a sleeve and I am getting ideas.

    thank you

    I also welcome drawings on CH as well

  2. I steer clear of MSG, aka chinese food which I looooove so much.

    I can almost plan my attack after eating MSG. I avoid it like the plague.

    Popcorn is a trigger for me as well as chocolate, nuts and no i am not allergic to them, alcohol as well. I dont drink anyway.

  3. Sorry I tried posting this story here about my son but it says pics to big and you can not resize these because if you do, you cant read the story....so here is the link to my blog....story on my son published in magazine called "Old Autos" a canadian newspaper dedicated to old cars etc


    blog is titled "Very Proud Dad Moment" and to read story just click on photo

  4. Congrats. Shadows scare the friggin pee put of me.

    Because you dont kknow whats gonna happen.

    Sit there tick tock am I getting hit? scary.

    Id rather get hit than brace for pins and needles waiting.

    Glad to hear your ok

  5. there's been a noticable improvement in my memory since starting the phosphatidyl serine. 

    I wonder if the phosphatidyl serine is particularly good for CH'ers with memory issues? Well I guess it could take a study to determine that, but we know it works for you and me Jeff, to which I emphatically state YEE-eee-EEHAW! 8-)

    Will be very interested to see if we get some reports on whether it's working or not from from Dan, Spiny, b.g., et al.

    am waiting for me results April 17. I post what they find, god,bad or nothing.

    Well you got people here keeping fingers crossed and/or praying, depending on religious affiliation, that it'll be GOOD. My money is on good.  :) [smiley=thumbup.gif]

    Opps Typo, I meant Good,Bad or nothing.

    I save my God for prayer...

  6. a french canadian friend did best translating it for me

    (22:52) Besides migraines, there exist other types of extremely painful headaches such as cluster headaches also known as suicide headaches due to its violent and frequent attacks. Unlike migraines, cluster headaches affect primarily males. It is said to be the most intolerable pain anyone could experience.

    Marie-Christine Alessi says: “suffering like this is not something which is possible. It feels like your head is on fire. You rip out everything from the side of the head, especially the eyes, the nose, the teeth… You can’t speak. Everything is stuck. It feels like you’re going crazy. It’s intolerable.”

    Tom’s video plays…Neurologist says: “these are the types of images we’re seeing more and more on the internet. They’re patients who film their attacks. He is a typical patient with a cluster headache. They affect men 5 times more frequently than women, more regularly men between 15 and 40. What is important to note in this video is the patient’s state of agitation. We see that he is holding his right eye therefore the pain is primarily on the right side. Often they’re the patients who do the “100 steps in the room” as opposed to patients with chronic migraine headaches who seek obscurity and calmness. These attacks are extremely and violently painful. They manifest through attacks lasting from 15 minutes to 3 hours depending on the patient. They can repeat during the day, sometimes up to 8 times a day. Also, these attacks repeat for several consecutive days or weeks. The pain is often described or compared to the introduction of a burning “flame” directly into the eye. This is an image patients often give us.”

    Marie-Christine Alessi is for the most part out of this hell due to the services of xxxxx?? at Morge hospital. She benefited from the implantation of a xxxx nerve stimulator whose goal is to blur the pain signals. Regularly she comes in to ensure proper functioning of her equipment. “It is functioning perfectly, the battery is still good and thereÂ’s no need to tweak it. You are feeling the benefits in the right location? You are satisfied?” “Yes, itÂ’s perfect.” The material that we implant is a “flexible electrode”? put under the skin which is linked to this type of battery which is also under the skin. It acts as a generator for the electric epulsion. On this patientÂ’s x-rays, you clearly see this electrode under the skin into the xxx. It functions with electricity which means there are no toxic side effects. Blah, blah (technical stuff). “You were implanted in February 2011. ItÂ’s been almost 2 years. It has improved your quality of life?” “Yes. I donÂ’t often have an attack, I still continue to have them but theyÂ’re not as strong as before, thatÂ’s for sure.” “Before that, you were having an attack once a day at a minimum?” “One or  two a day: one during the day and sometimes one at night.”. “You are using the simulator permanently now?” “Yes, I never turn it off” “YouÂ’ve never tried to turn it off?” “No IÂ’m afraid to do so.” Nights for Marie-Christine are always affected by attacks but they are shorter and not as often. “Yes, they hurt thatÂ’s for sure but they canÂ’t be compared to what they were like before, thatÂ’s for sure. If they wanted to remove the stimulator, I would be against it. I cannot live without it!”

  7. I have had 100,000 + Youtube Hits. I started my blog mid december and ad over 3200 hits. Which in todays world is a blip on a computer.

    My goal is to raise awarness. I am no one special. Maybe the poster boy for CH but thats it.

    Funny, my parents and brother are born in Germany and immigrated to Canada from Switzerland. My family lived there in 66/67. Beautiful country. I have many relatives there, love to go one day. Never be able to afford it though :(

    Thank you very much for the link

    How did you find it?

  8. Some kind member here on Cluster Busters seen this video and saw me in the video and sent me the link.

    About a year ago I was contacted from someone from Switzerland asking to use my video for a documentary.

    6 months ago a surgeon from Paris France asked the same.

    This video was on in Switzerland but it is in french so I am not sure which person it was that asked for it. Either way I am gratefull it got airtime.

    A medical team in Japan contacted me and is now making a educational video for patients and doctors using my video again. They promised me a translated copy in english.

    If you speak french....awesome,enjoy. If you dont, Blank face like me.... I am at 23:40 mark in video


  9. The worlds first documented baseball game was in Beachville Ontario Canada. 15 min drive from my home. Town so small if you blink, you pass it.

    Also Labatt Park is Canadas or if not North Americas oldest baseball field right here where i live.

    I wish I could get out to more games.

    Id love to see the Yankees play one day. On my bucket list

  10. in Dec 09 I wanted out. I was like "Cheque Please! "

    I had one of the most stressfull jobs. I was a service advisor at a dealership. If it wasnt the dealer principal on my butt, it was the service manager, if it wasnt him , it was mechanics giving me grief. And then customers.

    Christmas Eve, Dec 24,2009 I had a customer verbally assault me for 20 min calling me every name in the book. Then he assaulted me physcially. I stood there and took it.

    In fact I didnt blame the guy for being mad at all. He had every right to (mechanic resetting engine light, not taking time to fix) but how he handled it was another story.

    So after I was assaulted, my service manager went and hid. I walked into show room and found owner. He said "woulda do?" I sad nothing,your mechanic doesnt want to fix it. I said I dont get paid to get assaulted verbally or physcially. He said yes thats what you get paid for,I said you deal with him. That was my last day there. I quit over Xmas holidays.

    I had also had 21 hours sleep in 21 days. I was getting hit with so many attacks from stress at work that I couldnt sleep as Id get hit every other hour non stop for 21 days.

    I took a holiday and email the owner and said I quit due to stress,

    My attacks cut in half within 2 days of quitting.

    I ended up owning my own business for a year.

    Being a business owner was stressfull but different.

    I loved what I did. I was young enough to hide my attacks when I had them and did what I could when they got back with notes on the door"Family Emergency" and left or hide in the bathroom during attacks. Now the older I have gotten(41 this week), the harder it has become for me to hide and fight the attacks. WHich I can no longer do.

    Moral of story. Stress is #1 trigger for me. I avoid it like the plague.

    If finding another job that makes you happy might be an option. Self employment or disability like me.

    I think with everything that has happened to me in life with that crappy job, loosing my business, having 4 brain surgeries and ending up on disability is because  I am right where I am supposed to be. Everything happens for a reason.

  11. A year ago today I almost died. I had Deep Brain Stimulation Feb 27 and got an infection. They gace me 48 hours to live if I had not had the surgery reversed.

    I woke up Sunday morning before church. I sleep in my gotchies. Went to the washroom and noticed where the incision is for my pacemaker that it had a hole and was leaking puss.

    Said to my wife, off to church then the hospital.

    Went to hospital and by time I got there my right arm,shoulder all way to elbow was really sore.

    Started me on IV and anitbiodics. There was NO BEDS in ER. Got there at noon. At midight told me I had to stay the night.

    7am next day Monday, my neurosurgeon came and saw me and said tomorrow we operate (#3 for me at time), And remove pacemaker and lead wires.

    Next day operated and removed lead wires to brain. Left Electrode in. I didnt have time to think. I was scared. And hated surgery so far because I get violently ill to anestesia. I vomit 5 days straight.

    One year ago today this happened. I spent my 40th birthday in hospital. Since then I had the DBS re done (Nov 13,2012).

    I hope this years birthday is better. ;)


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