I found this. People like us...

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If you click the link after you scroll down, you can listen to the narrative...

Tell me what you all think....

It's good to hear some men speaking about their migraine on one of these sites for a change. The trouble is that it's not likely that the voices will be heard much further afield.

You are right John, we never really get a "voice".
Are you a member of Migraine Action, or Migraine Trust.?
They are at least trying.

I try to post things like this on my FB page as well.
It is so hard to get attention to our plight.

Its just not deemed important enough....

I'm a member of Migraine Action but I'm not convinced of their usefulness.

Funny you should say that John. I'm not sure either.
I managed to attend one of their "Education Days" 2 years ago. The best bit about that was meeting Lee, the director, and Andy Dowson, really nice and connected well. My own Neuro was also there.

I dont think I learned anything. Not sure what kind of migraine some of these people have. I came to the conclusion some people make a lot of fuss about not very much. Others have a lot to deal with, but just "keep calm and carry on" so to speak.

MA have been very supportive, more so than any neuro I have yet seen. Their leaflets etc are good. The help line is not much help. Yo have to speak to Lee to get any actual knowledge, and sadly she is leaving end of next month.

The worst thing she has done is change the newsletter to an awful glossy format. I cant read it for days, has to go outside to get rid of the smell.

What do you think is not so good John. How about Migraine Trust?

I think you are on the right track when you say I came to the conclusion some people make a lot of fuss about not very much. Others have a lot to deal with, but just "keep calm and carry on" so to speak. It seems to me that the organisation is about those with lesser migraines than us. They don't really have a lot about chronic migraine or the many forms it can take.

The site holds much the same information you can find elsewhere on the internet. The leaflets are good but only worth it if you are a member and can get them free.

I don't think the organisation adds much to the pool of knowledge about migraine and, would you have ever heard of migraine action if you didn't have migraine yourself?

I paid full membership mainly because I thought the forum would be useful but it's not much cop.

No they dont John, but I find the neuro's dont have much to offer.
It's all the "popular" form of migraine. Once in a while. Ate the wrong thing. Late night. Too much wine...etc.

I dont think the concept of "migraine disease" is a popular one.
They like things they can fix. They like to show success.

I once asked one of my GPs what her other migraine patients do to cope. Her reply "They take their triptans"...That's it, she had no more to offer. You take a Triptan, end of story.

I tried so hard to get recognition for us on my FB page last "Migraine Awareness Week". I got dozens of people to sing up and probably lost some friends in the process.
I even got a few celebrity friends, thought might raise the profile a bit (MJFox kind of thing). What did they do with it all......Nowt. They and Migraine Trust did it separately.....which just diluted the effort, and how much good did it all do in the end...None that I can see..It was to raise awareness......From awareness comes funding....THAT we badly need. I still have all the names of these supportive people, any idea what I can do with them...

Oh and the forum. No its never been much good. The FB page is actually better (are you on FB John? Many of us are). The FB page gets non Brits on, who are a bit more vociferous.