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Bejeeber

Disillusioning first look into CH and Facebook

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Sigh.

I was talking to a long time, very active and tireless forum member at CH.com who I've seen consistently give the most excellent advice (including routinely recommending that CH'ers come to clusterbusters.com) to countless CH'ers for years on end.

He mentioned that traffic is down there as of late due to a migration to Facebook. So I figure that CH'ers gravitating to Facebook is a reality that needs to be recognized, even if, judging by my very first look into it tonight, it looks like an unfortunate development so far.

Wondering who here is hitting Facebook for CH discussions and what impressions do you have?

I'm noticing that as I'm entering "cluster headaches" into the Facebook search box (in order to get an idea what the average CH'er seeking info will encounter), Clusterbusters on Facebook doesn't come up as an option, even though the official CB page does look very well done.

Also in this message board universe it's very easy to remain at least semi-anonymous when discussing busting, but since the standard approach to Facebook is to use your full real name and to have your every post instantly broadcast to family, friends and colleagues, that strikes me as an issue for most of us.....?

Then the first discussion I just found on CH.com's Facebook page was this following one I've pasted below, and it's seriously pathetic regarding busting:

Hello Im from Kelowna B.C. Canada ....I started a new cluster period two weeks ago.....is there anyone in the area also suffering? I Wanted to share some tricks that r helping me Deal with the beast......ora-gel for your teeth ..if u swallow it also numbs the throat ....Ice on neck and head ....i take frova before my next expected attack rather than waiting for the onset ....Has anyone had success with magic mushrooms?

111Like ·

Jackie Scott likes this.

Susie Doug Singmaster Murray I started a cluster 2 weeks ago also. Never tried anything you listed but will look into it. Hope your cluster ends soon

August 27 at 5:28am · Like

Negus 'Gustafa' Finn my cluster started about 5 weeks ago would like to know any tricks u have,i have only used the nasel spray and painkillers!what is frova my friend?

August 27 at 12:04pm via mobile · Edited · Like · 1

Robert Twigge frova is a triptan used to treat a single cluster attack....it is very expensive....about 25 bucks per pill in canada a doctor will likely give u samples for free ....drink lots of water and ice your neck and head i use a thai external liquid and rub it all over my face and neck and also started using ora-gel to numb my teeth and throat....Best of luck!

August 27 at 1:08pm · Like

Melissa Campbell I personally would not use magic mushrooms

August 27 at 1:09pm · Like

Melissa Campbell have you spoken to your doctor about it. I do not think something like magic shrooms would be good but I am not a doctor.

August 27 at 4:32pm · Like

Sandy Kinghorn thought that this might be of interest

I have been until recently a long term cluster headache sufferer.

In July 2008 I was referred to a consultant at the Western General Hospital in Edinburgh, Scotland by my doctor. The consultant suggested that the cause may be linked to the way I was sleeping. I tend to sleep on my side (foetal/recovery position) often with my hand under my face and also I previously used two pillows. The consultant suggested that the pillows might be putting a permanent crick in my neck during the night and that this might be an underlying cause. He suggested trying sleeping with a very small pillow, or no pillow, to try to keep my spine straight, up-to and including my neck vertebrae, while sleeping. I have taken this advice. I use a very small pillow, and also have tried to train myself to not use my hand as a pillow. (I think that this might also press a nerve in my cheek which might be a cause or trigger). This seems to have worked. I have had one or two individual headache attacks but not a cluster in the same way as before. I have woken up many times with the beginnings of one, but found that I had my hand under my face and/or my neck was scrunched up on the headboard. As soon as I sorted this out (i.e. moved my hand out from under my face and moved back from the bed headboard) the “cluster headache imminent” pain build-up has disappeared, and I have generally been able to go back to sleep.

I keep reading reports on line of people with CH clearly going through hell. I remember being prepared to try anything to stop it. This simple solution has worked for me so I am sharing it in a few places on line in the hope that it might help.

I put this up on a CH noticeboard on Facebook yesterday and it was apparently removed. It would be interesting to know why.

August 29 at 9:00am · Like

Robert Twigge I will look into it.....im getting pretty good at avoiding attacks with frova and would like to help other CH sufferers

September 1 at 9:22am · Like · 1

Steven Areia OXYGEN is AWESOME to stop the headache in its tracks

September 17 at 3:56pm · Like · 1

Steve Lambert I agree with you about the oxygen. While I was in the hospital for 17 days I was able to use oxygen at 15 lpm using non rebreather mask. Consistently, within 15 or 20 minutes the headache would subside. I wish there was a machine that could generate 15 lpm, but I have not found that machine. And, with 5 headaches per day every day (chronic cluster headaches), giant oxygen bottles are not practical.

September 22 at 4:41pm · Like

Robert Twigge use triptans as weel as oxygen

September 22 at 5:50pm · Like

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Jeebs,

I looked at a few sites several months ago and about cried. I found it very depressing. Also, I know someone brought up MM and started a ruckus. Not well received at all. A lot of wishing each other a swell day and not much helpful in the treatment line. As you see, some strange ideas are accepted as fact and I saw no 'facts' backed by medical documentation. I didn't go back.

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It drives me crazy. It's a bunch of people jabbering about CH with no knowledge base, no follow up, and no direction. I force myself to visit regularly and am sure I'm starting to sound like a parrot repeating the same two websites. ;D

I'm sure they serve a useful purpose, but it frustrates me to see so many people heading there for relief when it's just a gabfest.

Joe's 2 cents.

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I found a post on facebook the other day, this guy was stating that digestive gas was building up and going to his head causing the cluster attaacks, then advocating a raw food diet. Lost and clueless for sure. You have raised a valid issue here Jeebs. Seems to me the CH community when it leaves the old boards for facebook tends to scatter. This opens them up to risky treatments and misinformation. >:( Frova sucks. :P

Good'un Jeebs

bb

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We (Clusterbusters) does have a FB page so we can make announcements and have a presence.

http://www.facebook.com/bob.wold.39#!/clusterbusters?fref=ts

There are quite a few CH pages and you're right, there is a lot of bad info out there.

And yes, when some of us try to give information, even just a simple link, depending on the list, we aren't treated well.

Cindy here does a particularly good job trying to direct people to help. Between several of us we've been blocked or censored by several self proclaimed guru's that want to control their communities.

There are also others from here that do their best to try and pass along good information ....you know who you are...

Its difficult as there are so many pages and each one has its own personality depending on who made the page and why....

It all depends on who is running each page but there are some good things in that its possible to get the word out to a lot of people......if the page owners let you.

We try to do our thing and offer up the information and have found some good support.

You can also "friend" me at Cluster Buster ;-)

http://www.facebook.com/bob.wold.39#!/cluster.buster.7?fref=ts

Bob

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Guest theraginasian

Bob pretty much says it. The bottom line: Facebook, Reddit, etc. We can't help it if people believe, whether in ignorance or arrogance, that these are "credible" sources of information. I can remember writing a paper in High School and using only WikiPedia as my sources, before it become banned as the Devil's Inaccurate Fake Encyclopedia (which, btw, still happens to be more accurate than all leading former print, or now online versions, just follow the sources!)

Really though, don't go to online communities expecting the best of people... you will surely be disappointed.

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Between several of us we've been blocked or censored by several self proclaimed guru's that want to control their communities.

I've never been kicked out of anything in my life, but Chris   ousted me from The Cluster Headache Support Group for simply supporting and defending Bob.  How sad is that???   

Keep up the good work, Cindy!

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I'd consider an honor to be thrown out for defending Bob.

IMHO FB is the dumbing down of the internet....you can always get an answer there.....doesn't mean it's the correct one.....and most look no further.

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I was kicked out from a FB Clusterheadache group awhile ago, me and some fellow member in here. Have no clue why, but i suspect it has something to do with me suggesting busting all the time..... Haters gonna hate they say....

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Hi everyone, it's been a while.

One thing is certain, I won't mix my Facebook with CH in any way, just as I learned over my long CH career not to discuss this matter with just anyone.

It's sad ppl are getting misinformed but hey... tous les chemins mènent à Rome... we all meet at the same pain anyways, uh place, I mean... everyone their twisted path to... to where again? haha Even amongst clusterheads, it can get very tricky to discuss CH matters, so Facebook? no thanks lol, I'm well down here in this fungus hole :-P

[smiley=2vrolijk_08.gif]

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Thanks for the compliment Bob!

You guys ever read "Chicken Soup for the Soul"?  There's a particular story about a kid on a beach... The beach is filled with thousands of stranded starfish.  The kid is watching a man toss starfish back into the ocean one at a time.  Finally the kid say's to the man, "Why?  Why do you bother?  Look at all these starfish!  You'll never be able to save every one of them, it just doesn't matter!"  The man, tossing another starfish back into the ocean said....."It mattered to him!"

I'm sure I've come close to being blocked from a facebook group or two, lol! 

I know I've blocked one completely myself.

It's just that there's 1 billion using the social networking site now and I only have 561 starfish on my friend list!

http://mashable.com/2012/01/12/facebook-1-billion-users/

Those that wish to "learn" about alternatives usually find a way to send a private message.....if they're serious, they'll make their way to the boards :) 

One star came to the conference from Canada!!!!!  Wooo hoooo!!!

But the real reason I stay, chat, friend and chat some more is for the Advocacy angle.  An area in which I hope CB successfully triples or better yet quadruples this year.  I've heard over & over again incorrect information regarding CB conference content.  Shame and tsk tsk!!! This minimizing by fellow cluster headache patients who are aware of the scope of what's being done within this particular community coupled with NO mention of all our advocacy work by the naysayers and censoring types on FB confounds me.  Those people are just speed bumps in this mission.  No time for that crap.  I'm in it for those who aren't aware of all the politics.  They join us when they're informed.  The areas Bob & the Board of Directors have successfully moved this group into in the past year provide something for everyone.  The AHDA, SAMHSA, Blogs that were once dedicated to Migraines only now include our patient group regularly.  Visit my facebook page to see the current action alert!  lol

https://www.facebook.com/cindy.reynolds.1961?ref=tn_tnmn

Who can deny that our story is compelling.  Yep, it's controversial too.  CB has multiple sides emerging and that's exciting!  Do you guys know that at least 3 of the attending DC advocates didn't connect that the invitation to "Join us in DC" was an email sent by Clusterbusters?!!!  They asked me at the breakfast "How did you find me?  Imagine their surprise when I told them "I didn't.  You found us!"  Wow.  And yet they came!  Speaks volumes to me.  They're cluster headache patients who were thrilled with the opportunity to represent all of us!  Makes me want to cry. 

I'm not kidding.

I love this place.

In my heart, busting was a beautiful discovery that launched an even more beautiful commitment.  And if in 5 years all those "speed bumps' on facebook have an effective treatment because of all the work done here, It'll be worth it to me.

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Jeff is looking around for the next starfish. WinkMaybe the next starfish will help another one, and so on.. Smiley

That's the spirit Jeff!

Welcome Timm-Denmark, we're glad you found us!!!!

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I think it is so unfortunate that there is this type of negativity, let alone a lack of support for other sites/approaches at clusterbusters. I especially dislike slander about me on a public message board behind my back. It is very cowardly.

-Chris Hannah

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I dont mess with facebook and clusters either, one reason is i find i dont like sharing with people i know and i dont go there al that often anyway. To me facebook will be the next myspace, something new will come along and it will end up like they did sooner or later. Not to mention the people that are close to me already know about this damned disease and i dont like to discuss it with my name out there - you know what i mean?

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I think it is so unfortunate that there is this type of negativity, let alone a lack of support for other sites/approaches at clusterbusters. I especially dislike slander about me on a public message board behind my back. It is very cowardly.

-Chris Hannah

I do not see it as cowardly, I simply documented what I saw. Facebook is problematic site but no matter what site it is in my opinion people must be able to talk freely. Chris started deleting this guy's very decent comments about liquorice root protocol then threw him out. Reading this thread now it seems he has done it to others as well. That is no way to make it all better for us cluster headache sufferers. If there is some sensible explanation to that which I do not grasp I'm all ready for hearing it.

It is good to remember that just in life, there is all kind of people out there in CH communities. We just have to be patient for the bad eggs to crack.

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I was kicked out from a FB Clusterheadache group awhile ago, me and some fellow member in here. Have no clue why, but i suspect it has something to do with me suggesting busting all the time..... Haters gonna hate they say....

Was this Cluster Headache Support Group as well ??

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Thank you Salander for making me return to Clusterbusters board. It's been a while.

There are all kinds of group on Facebook, that's true. But hanging in there for a while you get the idea what they are about.

Cluster Headaches group is great, in my opinion

http://www.facebook.com/groups/17789934480/

The Cluster Headache Support Group was the one Chris threw me out as well. I have seen these people come, seen these people go. I find it extremely nasty when we are sharing knowledge of condition as severe as ours and some people want to decide what others may or must know and what not. The censorship, deleting comments and picking "the right (wrong) kind of people" by removing folks on the group is really not the way to go.

Well, eventually the truth always wins. Always !

I am also very fortunate to have a great bunch of people in our Cluster Headache Natural Treatments group. I loved the atmosphere, caring, sharing and warmth here in Clusterbusters and have sincerely tried to create something equal.

http://www.facebook.com/groups/385160354828914/

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