Hi everyone,

I would really appreciate responses to this....

Over the past month I have been sending messages to people on facebook that I do not know who suffer from cluster headaches.  I know that they suffer because you can do a search on facebook for 'cluster headaches' then posts by everyone. 

Why am I doing this?  Well I went undiagnosed for over 10 years and that was HELL.  Numerous doctors told me I had tension headaches etc etc and did absolutely nothing to help me.  I was left in pain, scared and feeling like I was going mad.  How can something hurt so much and not kill me.... and why oh why do the doctors tell me that I'm suffering from a tension headache? 

So what do I say in my message?   Basically I tell people about this site.  Some simple advice - oxygen, red bull, exercise, melatonin, avoid alcohol.

I'm curious to know if anyone has any problem with me doing this.  You may have come across posts by Perry - Heavy Metal and Tarijo his wife - they came to this site after I sent Tarijo a message.  Some others have responded to me personally - not many.

I am aware that privacy is an issue - but also that if people do not use their privacy settings on facebook then their posts are there for all to see.  Ultimately it is my aim to be helpful, not to stalk.

If you feel that the messages I am sending could be seen to be a bad thing - for this site - please say so.

Thanks,

Kate


Here is a copy of a message I sent tonight (I have sent about 14 during the month)

Hi, Sorry to bother you.  I saw your post after doing a search 'cluster headaches'.  I've suffered for 20+yrs and have been sending messages to people who are struggling. Check out clusterheadaches.com Lots of other sufferers you can chat with, get great advice and find ways to manage this 'beast'.  Ask your doctor about oxygen - it works!!! Also drinking red bull and other energy drinks with caffeine and taurine can help to reduce/abort an attack if taken at the first sign. Vigorous exercise can also abort a hit. If you get the dreaded night time wammies (I do) try melatonine.  Avoid alcohol!!! I hope you don't mind me sending you this message - it kills me to think how many people are suffering needlessly.  On the whole doctors don't know what they are dealing with (I went undiagnosed for over 10yrs - hell!!) that is why I mention this site.  Only another clusterhead knows the pain.  Wishin you all the best,
Kate (in Australia)

I would enjoy having someone to talk with about this.  No one can truley understand what we are going through!  I have been a sufferer since I was 18 (now 31), and currently I have been in the longest cycle yet (6 months).

I see no problem whatsoever. Carry on. :)

I don't see anything wrong with actively contacting other clusterheads, Kate.  If their FB settings allow people they don't know to see their postings, then there's no expectation of privacy. 

DJ and Steph would have to answer the other aspect of your question--but offhand, I don't see why they'd have any problem with it.  There are already a couple of existing Facebook pages that refer people here, not to mention links from many other places on the 'net.

Best,

George

Since I posted, I have actually received a response from someone on facebook that I sent a message to earlier tonight and they were really happy, no dramas.  I must say all the responses I have had so far have been good, but not everyone has responded and I just hope that I haven't freaked anyone out.  (If nothing else they will change their privacy settings  :P)

This place changed my life and I know a lot of others could say the same.  That is why I thought I'd better check with you  to see if you think what I'm doing is okay.  The last thing I want to do is cause any problems.

Thanks,

Kate

Kate, I'm not official but I think waht you are doing as wonderful. We each needd to comkmit ourselves to serving the cause in some way. Your's is reaching out..Don't know how peole get thru this without this site and clusterbusters.com. This is becoming my primary source of infor and treatment options. Jay

Kate, I think it's great what you're doing.

:)mel

I cannot for the life of me see any reason whatsoever that DJ and Steph would mind if you send people to this site.  That is what it is here for and why he started it in the 1st. place. 

Perfectly said by a perfect CHen. ;) :-*

Goat


Linda_Howell wrote on Jun 29^th, 2010 at 12:18pm:

I cannot for the life of me see any reason whatsoever that DJ and Steph would mind if you send people to this site.  That is what it is here for and why he started it in the 1st. place.

Excellent work!

Jerry

your just paying it forward kate.

I think this is a great thing as well, about the only thing I would change is make it clear that CH.com is free and a support site not a site that is going to try and sell them something, just think it should be clear. Would hate to think a suffer gets your message and deletes it thinking it is just spam. Keep up the good work if you can help just one sufferer it is worth the effort.

It looks all right from here!

Go to it!

Charlie

Good job, Sweetie.  Just think....you are touching lives.

How can it hurt?

Pun.

I'm not terribly familiar with this stuff so my response is laced with ignorance. 

All systems normal.

Steve G

Kate,

I think that what you're doing is absolutely wonderful. If I would receive such a message, I'd be delighted! :) So many people do not know about ch.com yet and finding this site can be a huge relief and help in so many ways.

It might be that some folks don't reply quickly, because not everyone visits facebook daily, weekly or even each month. So be prepared to get messages later on. :)

Carry on, Kate! :)

PF days from Finland,
Sanna

You have my Thumbs Up!   

...As you were  ;)

I'm so pleased that no one has said anything bad about what I am doing 'cos I too think that if someone had let me know what I could do to help prior to finding this place in 2005 it would have saved a lot of pain and anguish.

I received three responses today - all very positive.  One guy said he was ready to jump off a bridge the pain was so bad!  Fair to say we all know how that goes...

Thanks again everyone! 

Kate

BigMatt wrote on Jun 29^th, 2010 at 4:10pm:

about the only thing I would change is make it clear that CH.com is free and a support site not a site that is going to try and sell them something, just think it should be clear. Would hate to think a suffer gets your message and deletes it thinking it is just spam. Keep up the good work if you can help just one sufferer it is worth the effort.

Great Job Kate...  but I agree with Mattrf.. make sure they understand that it is a free sight..

Peace & Blessings
LadyLuv

[smiley=bow.gif] I think anyone who sufferes from CH's needs to know about this site. I too have suffered for almost 6yrs now chronic!!!! This site has done alot for my life. And also small little things like red bull who would of thunk???. Tell the world !!!!!

You haven't contacted me yet on Facebook!  I'm jimlux28  (Jim Lux in Durham, NC)

I whine occasionally on FB about CH, but mostly day-to-day chit chat -- I'd love to have you as a FB friend!

Quote:

I received three responses today - all very positive.  One guy said he was ready to jump off a bridge the pain was so bad!  Fair to say we all know how that goes...

Yup, we do. I don't think you need any more evidence of the good thing you're doing. As an aside, since I've been pretty up front with others about these things, it seems I'm the guy they go to for headache advice. I send them here if they think they have clusters. And to a good headache specialist! blessings, lance