Jump to content

Leaderboard

Popular Content

Showing content with the highest reputation since 04/30/2023 in Posts

  1. Dear friends, thanks a freakin lot for the overwhelming and cheerful days at the Glasgow conference: Ainslie & board, speakers, volunteers and everybody joining: it has been my very first one and i'm still riding the waves of cordiality, joy, information and togetherness that we have been sharing. Thank you so much for this extraordinary experience, for including me so heartily and for spontaneously making me the conference photographer Not naming anybody here - my love goes out to all of you as i share some of the images below. I was not prepared equipmentwise, tried to make the best out of it and i am now done with processing them. Don't worry about your memories: the lighting atmosphere of the pictures is quite a bit colder and lighter than it has been at VOCO conference rooms. But the original massively yellow hue and the poor colour rendition of the lighting finally led to rendering all a bit more neutral. Hope y'all can find and enjoy yourselves on the pictures. Here's a link for downloading and saving all the images in a better resolution (1920p, 300dpi). Also please let me know if you don't want to appear here. Love and some more big hugs from Berlin !
    6 points
  2. Back home know. Just want to say a BIG thankyou to are vice president .Ainslie Course for a great weekend in Glasgow
    6 points
  3. Mark and Dave from Ontario....our fearless leader Bob Wold from Illinois our vice president Lady Ainslie Course from Glasgow, and Joseph McKay from NJ!
    5 points
  4. ...OXYGEN!!?....dump the amitriptyline, worthless
    4 points
  5. Hi everyone, I wanted to take a minute and share some of my efforts to battle the bunny. I have quite a few stones that have been left un-turned but today I turned one more. My insurance is dreadful even though I have the best I can get. I have been curious about Botox for some time and decided to just pay out of pocket today (not 100% for CH mind you (middle aged chic here), but a mixture). I went in with pretty measurable shadows. The process was easy and less painful than i had anticipated. The end result that I'm sorta excited about is that my dancing eye is gone and my shadows were lessened! I couldn't tell you about how it effected my CH as I don't believe I'm in cycle, but the minor pluses count in my book! I don't think it will help with a cycle to be 100% honest but it has helped me to stop winking at every passer by. Not much but something!
    4 points
  6. Well I did a search for CB tee shirts and initially a few images of actual folks wearing the seemingly real CB shirts popped up, then I clicked the shop button and this is literally what came up.... LOL Sorry but I guess we have to go to get an actual shirt... IDK something tells me you wont be sporting this on your next fishing trip @Rod H
    4 points
  7. I think you look great @Racer1_NC but I find this meme relevant to my life... 
    4 points
  8. Great photos! (damn, I look old as hell it's self) @BoscoPiko They were intro cards.....name, where you are from etc. No super secret initiation rituals....but that's an idea for future gatherings.
    4 points
  9. @Bejeeberwouldn't have missed it buddy .
    4 points
  10. I know I'm I'm not alone in my utmost gratitiude to/admiration for this Bob Wold guy!!! ^^^^^ Glad to see you've taken the opportunity to be there in person @Shaun brearley - thanks for the pics, and please keep posting any ya snap.
    4 points
  11. I SHOW THEM THIS AND EXPLAIN IT GOES BEOND THE KIP SCALE SOMETIMES WHEN THE BEAST IS OUT TO DESTROY YOU
    4 points
  12. If it hurts it hurts. Just say 10. They are used to people that don't know about pain nuance.
    4 points
  13. That's a good question - since this doctor is unlikely to know much of anything about CH or be able to conceptualize pain on a CH scale, I figure your best bet for communicating effectively with such a doc could be to try to go with a 'normal' scale of 1 to 10, not CH 1 to 10.
    4 points
  14. I felt strongly compelled to share my experience. My situation might be quite different then yours, this is not advice, just sharing. I am 58 at the moment, I started getting severe headaches over my left eye in my early 20's. It changed my life completely, I dropped out of college and had nothing but pain to look forward to, day-in and day-out. I later found out that what I believe I had was called, "Cluster Headaches," also referred to as Suicide Headaches." I went to several Neurosurgions, ENT specialist, Chiropracters, etc.. For me, it ended up being meditation and prayer that worked. I had listened to a tape about meditation and I felt, well I tried everything else. I found through meditation and controlling my breathing, I could direct my blood flow, I started this process with focusing on my fingers first, one at a time. I found I could push and pull my blood circulation and pin pointed it where it hurt the most, which was over my left eye. I meditated and prayed with all my heart. I felt, what I can only explain as a popping sensation / blood circulation going down the leftside of my nose by my eye. My headaches ended that morning and had been gone ever since. I wish I could share the joy I get from something as trivial as looking at a cloud and not getting that piercing pain of yesterday.
    3 points
  15. We will kick off on Thursday evening with a cocktail reception and registration. Following will be two full days of presentations, workshops, and sessions, (Friday and Saturday), and there will be a half day of presentations and discussion on Sunday. We will finish at around noon on Sunday.
    3 points
  16. For some people, side-switching might indicate a change in the cycle. For others, it's just another thing that happens. It's not common, but not super-rare. What jon said -- you want oxygen for stopping your attacks. The more you use the injectable sumatriptan, the worse things are likely to get -- more, longer attacks, longer cycles .... And prednisone should be limited to once a year (a taper of two or three weeks). And the amitriptyline is, indeed, probably useless. Get oxygen (Read about that and other things here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/) For now, split the injections when you use them: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Start the vitamin D regimen, which has helped many hundreds, if not thousands, of people with CH: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Consider busting: Read about it at the end of this file -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- or by cliclking on "New Users -- Please read here first" at the top of any page (in the blue banner).
    3 points
  17. Thanks for the pictures. The conference was enlighting and it was an honor to meet you all. Greetings from Youri and Ann from Belgium.
    3 points
  18. Last night on UK news I saw Crispin blunt Conservative MP for reigate advocating the legalisation of psychedelic substances to treat depression and PTSD . This man has been fighting for a few years know for this , and he is getting somewhere . I intend to e-mail him today to see if he would like to discuss cluster headaches and psychedelics . I feel the more ammo he has to fight the cause to legalise psychedelic therapy, the bigger the chance it could actually happen in the UK .
    3 points
  19. @BoscoPikothe main thing is did it get rid of any wrinkles you may have had ?
    3 points
  20. Email ainslie@clusterbusters.org She may be able to hook you up.
    3 points
  21. 3 points
  22. @Racer1_NC should have kept @BoscoPikoguessing .
    3 points
  23. eswart, your photos are terrific! The color correction is perfect! That is hard to accomplish. Thanks for them all!!
    3 points
  24. Thanks for the photos. I hope to join someday on a european convention.
    3 points
  25. It was a pleasure to meet all of You ! Best wishes from Poland !
    3 points
  26. 3 points
  27. Yes @Bejeeber thats me with Bob . I agree PRICELESS .The bloke is a GOD
    3 points
  28. I tell them I have Clusters, so my assessment of pain levels will reflect that fact.
    3 points
  29. I don't know if this is allowed to be posted here but I am an old timer clusterbusters member and I am in a traveling band. My "gift" of cluster headaches has turned my touring schedule upside down and for a long while my life became an unmanageable mess. Never knowing how sick I will be whilst traveling on the road. Booking shows only to get cluster anxiety etc. We have many albums out and my band mates and I decided to record this album to bring cluster headache awareness to the general population. This album is intended to illustrate the social, physical, economic, and psychological aspects of the beast. Please feel free to share with others as we hope it brings awareness to us that suffer and suffer dearly. If you like the album, please leave a like and if you feel like you want to comment here, or on our channel Chatterbox, we would really appreciate it. God speed. And please be well.
    2 points
  30. 2 points
  31. 2 points
  32. 2 points
  33. Exciting to see clusterheads starting to file in, and the ultimate combo of snazzy T shirts plus candelabras. I'm still guarding (and occasionally wearing!) my 2012 Clusterbusters conference T Shirt. Recognizing a couple of American types in attendance so far.
    2 points
  34. Surprisingly most Docs I've encountered recently have been knowledgeable enough to at least have an understanding of how much pain clusters cause. I've even gotten a "Damn. I'm sorry." out of one... If they don't have a clue, they get educated in a hurry.
    2 points
×
×
  • Create New...