My life with ch has taken many twists and turns. When I was in remission for nearly a year, I decided to take my ch treatment into my own hands - and when ch returned in 2006, I did exactly that. I've kept my promise to myself and haven't seen a doc or neuro since.

But, I haven't done that on my own. This site and Ouch and my wonderful ch family... have been there with me each step of the way. I have been planning to give something back for ch community for years and I've been wondering what I can do and how.

One plan has been to help other clusterheads in Finland. I got frustrated with the docs and treatments available and the chat I had with Svenn about the differences with our two countries made me think about my "play if forward" - plan once again.

Now, many Finnish clusterheads have absolutely no idea that this site exists. One reason for that is that our organization for ch is just a small wing inside a migraine organization and they - as far as I know - have not added ch.com or ouch to their links site. A small step which I have asked them to take via email and that was promised to me by the chairwoman herself.

That was just a another thing which infuriates me what comes to ch's situation in Finland. I know for a fact that there are many finns who have found their way here or to other international sites and gained relief thanks to advices and tips they read right here. So why on earth would the only (you read that right) official site simply ignore us?

So, I plan to do something. I am not sure what other finns would need right now, but I'm going to find that out. If nothing else, I want to be that link between ch.com, Ouch and other finns. If the official organization doesn't give a crap, that's their loss. Election year is coming up in here, which means that it's the perfect time to bother politicians - including that MP who just happens to be the honorary chairwoman of Finnish Migraine Association.

I used to be a member of that one, but resigned, because I simply didn't get enough in return for the membership. Now I am working on finding what I should do, how, when, where and what information I need.

And now I need your input. What would you suggest? What would you want?

At this point, there is a site for finns at facebook and one man has his own web site. But as far as I know, no message boards. We can, however, call one guy who is a volunteer, and talk about ch as much as we want.

Ch is not that known in here, so awareness is one thing.
Better access to docs and neuros is another. Oxygen and energy drink awareness is third.
A proper community is the fourth.

That is what I have so far. Let me know what you think...

Sanna

WOW!  Sounds like you have a good idea what you want to get done.  I suggest you make a time line so you do not get overwhelmed or upset due to slow progress.  It will take time.  I admire your drive and determination.

As Karla said "It will take time". I know loooooong time.
But you are young. Don't give up and keep fighting. You're on the right way.

Maybe a new finnish homepage ... (clusterheadaches.fi or something. Just my )
Steve

Johnny,
to answer your question, I went and did many online searches about ch in Finnish. OUCH and ch.com did not appear in Finnish searches, but in English ones they did.

I did check if one Finnish sufferer's website still has ch.com and OUCH in its links and it does. But, as far as I know, the official site at our Migraine Association's website doesn't.

Sanna