It's great to see that you can show such compassion for something you have never experienced yourself or through the tales of a loved one. That's awesome, and appreciated more than you know! But, more than that, having someone like yourself to share what we go through may help more than anyone might think BECAUSE you don't deal with this affliction first hand. I say that because one of the stigmas of having these visits from the beast is that it is often difficult to "convince" those around you that this pain is VERY real, and it is not "just in our heads." We're not "crazy." 

I'm not sure what you're hobbies are, and I obviously don't really know much about you, yet. However, you did mention that you have seen videos about cluster headaches on YouTube. If you happen to use Facebook, Twitter, or other social networks, you can share those videos, share links to articles, and other things of this nature to possibly familiarize those in your circles with this terrible curse that some of us face. And, if just one of those bits that you share moves any of them, they may begin to do the same.

You already have my great appreciation and admiration for showing your direct support here at CH.com. That is for sure!

My name is Anthony or most of those that know me personally call me Tony, actually. Wonderful to meet you.

@Tony; Honestly after seeing those video's... I have a hard time understanding how /anyone/ could say that it's an act, or fake. You can't fake that. Not what I saw.

Thanks for the suggestions and the kind words. I'll take that into consideration for sure. Yes, I have thought about posting those videos to my Facebook, but I'm afraid it'll scare some people. I don't want to give someone a new phobia, if that makes any sense. I myself have anxiety problems so, I think to myself "hmm, if I showed this to my younger self... yep, I would be scared out of my mind". But I think if I put a disclaimer up, I should be able to share some of the vids. As long as anyone who sees it who might have a tendency to fear scary medical things has the restraint to heed the disclaimer. lol

@Coach Bill; That's also a great idea! I just might do that. And who knows, like Tony said, if they hear the explanation from me, someone who has no one-on-one connection to CH, maybe they'll be more willing to listen and take it in.

AussieBrian wrote on Oct 27^th, 2013 at 3:29am:


Totally agree, they are very hard to watch as they bring back memories I'd rather not remember and I know what pain the person in the video is going through.

It also makes me understand a bit better what our supporters go through seeing someone mid-CH.

Surreal is not the word for it. It's my life, I live it every day, have for many years, and will not, cannot, don't want to watch it. But thanks for being willing to spread the good word. I have no idea how you might do that but please address the crucial distinction between CHs and migraines, or every day headaches. We get so tired of hearing, "oh yeah, I have that, too." Sigh. Blessings. lance

I get both migraines and CH, so I'm more than aware of how different they are.

Yes, migraines can be painful and they certainly do have an impact on quality of life. If you'd never experienced a CH I can quite easily imagine you thinking that no headache could possibly compare. But the pain of a CH is quite something else.

One question I was asked when being diagnosed with CHs was if I was given a pistol in the middle of a CH, would I consider using it. Nobody with migraines seems to ever consider it, but it seems to be a common response for people with CH to have at least thought about it. That alone says a lot about the difference between CH and migraine.

Another telling difference is that with a migraine what works well for me is to go to sleep for a few hours. Now the idea of even remotely being able to lie down and be still to go to sleep during a CH is simply impossible.

As my specialist wrote on a report - "The term "Headache" does not convey the severity of the condition."

My specialist, as the Director of the Medeval Research clinic's Headache clinic in the UK (which grew to become the largest non-profit medical research institution under his watch) for 17 years, this man has witnessed probably more CH attacks than any of us would care to witness.

Goadsby has never had a CH attack, nor taken any drug used to "treat" CH. Neither has my CH specialist. They will both willingly and emphatically state this. It hasn't stopped them trying to help to fix the problem for us.

As a CH website Moderator and Admin in Oz, I have put 3 years of my life into this very cause, helped many Aussies gain access to specialists, medications and an understanding CH community. By all accounts, my prompt replies saved many from misdiagnosis, kept jobs, relationships, mortgages and headed newbie CHers off the 33+ year path I went down. This was a rewarding thing to do and the overwhelming heartfelt Thank-Yous I got showed me how grateful CHers and their supporters are when help is offered.

Just putting sufferers in touch with the correct information is a huge help to them.

With the harnessed power of the internet, we achieved a lot and very nearly got the D3 regimen into clinical trail stage here in Oz, as the Wiley Batch may or may not testify....

A lot can be achieved, with CH, or as a supporter of CH.
You don't have to have CH to help those with CH.
Our families should know all too well...

Good luck with it, you'll need it, it's a hard slog and one I'm still grappling with.

Cheers, Ben.

Interesting. I'm not sure that I've seen another post like this one except for ones that ended up being snake oil salesman, which doesn't seem to apply here.

I appreciate the thought and compassion as well and I support what you are trying to do (except you have to buy your own T-shirts and such..lol). Your intentions sound honest and good so I do hope you achieve spreading awareness which could end up benefitting those of us that do suffer from this horrific condition.

Good Luck !!

I4B