I really want to help spread awareness about CH. I'm not really sure where to start though.

I don't have CH, nor do I know anyone who has it personally. So, I mean, I don't see a neurologist. If I did I would ask him/her if they were familiar with CH. But seeing as I have no need to go to a neuro, that opportunity is kind of out.

I'm trying to think of ways to spread awareness. So far Youtube has been pretty good with it (it's how I found out about it). But I don't have a huge following on my channel, so if I made a video to try to raise awareness, not many people would see it.

I know it may seem odd since I have no real connection to CH personally, but, something moved me when I saw and read about just how terrible this pain is. I want to do what I can to show that I care, and to support.

At this point I'm just brainstorming... if anyone has any ideas, or tips, or suggestions, I am all ears.

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.

Hey jair,

I know a great way to help the cause and spread the word about CH.

At the bottom of this page you can hit the Pay pal donate button or you can just hit the button that says CH.com store and order a shirt or something. When someone inquires about clusters you can tell them about the cause.

P.s.. I never broke my finger before but im sure I would be able to tell someone what it feels like.

Coach Bill

@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.

I'm just so proud of you being able to watch those videos, Jair. I've tried a couple of times but they were far too scarey.

Good health, my friend, and only great days ahead.

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

I'm just so proud of you being able to watch those videos, Jair. I've tried a couple of times but they were far too scarey.

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.

I had never really thought of that. It must be pretty surreal for you to see it, because you don't see yourself when it happens to you.

Again, thanks for the kind words, and the ideas. I'm thinking about sharing one of the videos I saw.

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

Yeah, that's a big one. The distinction between Clusters and Migraines... they're completely different.

Well, the only similarity is that they both likely originate from brain-storms... er right? That's the theory at least, right?

But having an electric storm going straight through the Trigeminal nerve is QUITE different than a migraine.

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.

True. From what I understand, sleeping can help with migraines.

With CH, it freakin wakes you up... so, that right there is a telling difference in the type/amount of pain.

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.

Thanks CH Brain. That gives me a lot of food for thought.


wrote on Nov 1^st, 2013 at 6:25am:

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

I couldn't agree more. Honestly, I think Horton should have kept the original name, instead of changing it to Cluster Headache.

You know, I think I'll ask someone I know the next time he sees his Neurologist if he could mention CH to him. Maybe a link to this site?

I don't see a Neurologist for anything at the moment but I know someone who does and maybe he'll be willing to mention it to his doc.

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

I4B,

LOL.. What's snake oil?? I'm not a big fan of snakes... But thankfully I have never been bitten by a snake, but I'm sure I could explain how it feels to someone. Or I could just buy a shirt.

Coach Bill  8-)