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ClusterHeadSurvivor

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Posts posted by ClusterHeadSurvivor

    First time posting and success with ausanil

    in General Board

    Posted

    Hi, and welcome.

    At the ClusterBusters conference in September Ausinal was there and gave us all each a free sample. I myself have chronic CH and chronic migraines and tensions. My son has chronic migraines and tensions...not CH.

    I brought it home and went to out DR and asked first if it was safe for my son since he is 15. She said yes.

    My son was reluctant to try it because of the burning in the nose. Shortly after we found out and thanks to a fellow CHr John BeeBee that his migraines abort 100% by 100% pure oxygen at 15 LPM.

    My self I tried the Ausinal during a brutal migraine on a nice day out in the garage.

    It was one of the worst feelings ever. Felt like my nose was on fire. It subsided(not aborted my migraine). And shortly it came back. Its ok. I am not faulting the medicine nor bashing it. Only describing the one experience I had with it. What works well for me is Tylenol extra strength for Migraine pills with a coke. it helps most effectively with a dark quiet bedroom.

    Everyone's experience with treating CH, migraines or tensions is different. Not everyone has same reaction.

    The treatment rate for Busting with CH is very high but some it doesnt work...for me...its helping.

    Since Aug 19. I have had only 4 Kip 5s. That is it.

    I was chronic with attacks every 12 hours or less for 9+ years. Averaging 3-8 attacks per day.

    I have never faulted anyone for trying to get relief.

    I am really happy for you that it broke your cycle and brings me joy to hear another person is pain free. If its Busting, Brain Surgery, squeezing  a stuffed animal, whatever works...high 5 and happy for ya

    Home After 4 Hits and Almost being Killed

    in General Board

    Posted

    Hey Michael, its Tom aka ClusterHead Survivor on FB.

    It was my pleasure meeting you and please PM me if you need to talk anytime on FB.

    I can relate in soooooo many ways...as others can. Especialy about the doughe bag friends we once had.

    I don't wish the CH on anyone but as I laid in the hospital for 30 days total...I wasnt them to feel the loneliness I felt laying there without a visit, without a call, text,  email, shit anything....nothing from no one. And they knew when and were I was. Pathetic huh. How badly can we have pissed our friends off? We didn't Michael. They are just cowards. Self absorbed bastards who live the life of no pain or health issues and are so tied up in their own mental state they can't even have the balls to face us.

    I see the one bastard sometimes a couple times a week(we belong to the same group of car events as we are both car guys). But this prick is a firefighter. He once told me...i can't bear to see you have an attack, its to hard. I thought you cowardly bastard...try being the one having the attack!

    So Mike....don't sweat it....just cowards. Forgive them for yourself. Not them. Move forward. We are family now. us cluster Heads at CB and on FB are your friends and family now...capiche?

    Love ya man

    New procedure

    in General Board

    Posted

    i have had 4 brain surgeries...no more for me...I am done.

    and the DBS seems to be helping...

    I am still chronic...but have less attacks and less frequent Kip 10s..

    If this is true...I hope many find relief...

    I just hope its not some quak selling people a supposidly possible fix...

    confirming surgeries takes years and many guinea pigs like me....not just a handful of people

    New Potential Drug For CH

    in General Board

    Posted

    wow, I a 1 of 10% club....and I get chronic migraines and tension headaches too....makes me even more rare...

    Being the 2nd in Canada for DBS...I am done with using my body as a funnel for drugs....that have given more side affects than relief.

    But I do sure hope it works for some people....

    No one episodic or chronic like me deserves 1 single attack..

    thanks for the post

    Dr Elliot Shevel

    in General Board

    Posted

    Having 4 brain surgeries under my belt. Id like to think my advice/opinion is warranted.

    First let me tell you "There is NO CURE", no such thing.

    There is band aids..like LSD/Shrooms/DBS/ and so on....

    It comes  down to personal choice. People should make there own decisions, own educated decisions not based on what he / she said... facts

    Any type of surgery is life altering.

    Prior to my 1st surgery I was adament to have somethin done as I had tried traditional medicine.

    I am forever changed because of surgery and its really and open ended answer that can go on for days...but I wont bore you.

    My recommendation is research research research...and then research more. Ask, ask ask and then ask more.

    Think of it this way....

    When I got told I was sick...that was it.

    No dr. told me how to live sick. He just said your sick

    It was up to me to live and learn how to live sick and cope

    Id find every single patient...and talk to them...people who have had the surgery...and go from there.

    thats my 2 cents

    New to this site, Husband is a sufferer

    in General Board

    Posted

    Lisa, Just let me say on behalf of every sufferer/survivor...thank you for being supportive and being here.

    My ex wife would slam the door and say I cant deal with this.

    My present wife is like you. Supportive. Kind and willing to learn/help/support/care.

    It makes my heart smile when I read about every supporter out there...

    I say this all the time.

    My son has no choice. Im dad no matter what.

    My wife has the choice to pack and leave, yet stays and helps.

    I have immense respect for spouses who choose to stay.

    thank you/

    This is one of the best sites for info and the most caring.

    From one Tom to another. Wish him pain free days

    Distressing News

    in General Board

    Posted

    I am still very upset over this news, I cried as I shared it with my wife and son and said this just sadly validifys our disease once again. This is now the 4th time in the last year and a half I have heard of this.

    How many more people have or will take their own lives before we get the help we need and or recognised for the disease???

    I blogged about Suicide awhile back, discussing my dark days in dec 2008 and how close I came and how since my life has changed.

    My heart pours out for anyone that is in that dark place, I am personally sh*t lucky I have not because what I have been through in my life.

    I am sending a virtual hug to all of you CH ers out there...Wishing, praying for relief for all of us.

    God help us

    Started a Facebook Support Page

    in General Board

    Posted

    I have had several emails thanking me today. Sorry I do not live in your misery bubble. I feel sorry for you.

    No one has to pay me anything. Lmfao!

    You do not represent cluster busters nor do you represent me or anyone in CH and not do I for that fact of the matter

    The 25+ thank you emails and compliments I recived in the last hour alone is nothing because if I help one person it's worth it. Sorry you live in a self centred bubble

    I don't care I was denied. I only care about the people who want to learn and live positively

    I bring a lot to the table. I am one of 24 on the planet who had DBS. My FB is about me reaching out to help people. If you can't see that them I feel sorry for you.

    I am not forcing anyone to do anything they don't want too

    Sorry gotta run. A lot of happy FB friends wanting to talk

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