This is me being tactful.... but I'm seeing a trend on here that I want to address.....

For a lot of us "OLDTIMERS" here (and I'm speaking of those of us who come to this board everyday to help, support, see what's new, etc), we're seeing a whole lot of people come here who have just been diagnosed and want something to STOP the pain immediately. And we're also seeing a lot of people who were here years ago and got help when they needed it and just now got hit again and have come back after being absent while in remission.

I'm having trouble putting this into words, but I just can't understand why anyone would go away and not stay and help others or stay around and try to help find something to enlighten their docs the next time they're hit (we know we're going to get hit again) or just keep up with what's been done or what's new.

There are a handful of people (some episoidic - some chronic) who check this MB daily and help where they can (because of the help they received when they needed it), but so many just come - take what they need and leave and never give anything back. Those are the ones I don't understand. Then a year or so later when they get hit again they come back and when those of us who have been here try to help them they say, "Oh I tried that and it didn't work!" Well, things might have changed in the past year or so and if you'd read the NEW info on the left or stuck around you'd know that!

It just hurts me when I see someone say, "Hey, you guys have been wonderful. My cycle is over now and I don't need you anymore. Maybe I'll see you if this thing ever comes back." The real funny part of that one is - had the board moderator had that attitude we wouldn't have a board to come to anymore. Yep, for those of you who are new and don't know - our DJ (the guy who started this board back in April of 98 because he thought he was alone with his CH) doesn't get CH anymore. Hasn't for years, yet he keeps this board up and running for those of us who do so we can get and give the help that's needed.

For those who have stuck around after your cycle ended and for those that are in remission and are still here daily, that's what it's all about. Helping those who need help get the help they need.

Guess I just needed to get that off my chest. Thanks for listening.

Hugs BD :-*

Barbara,

OUCH  I think that was aimed right for me.   I will say this in my defense though,
After my last bout,  I kept coming on to offer support etc. but it seemed like just being reminded of clusters on a daily basis, would give me more shadows.  I know that may sound crazy,, but I swear its true.  Its like this devil is in the shadows, and if you mention his name, that is an invite to come out and invade.  You may have beat him back, but all it takes is one false move and he is right there ready to strike.

Its like my mom, who has restless leg syndrome.  You cant even say the words to her, because it will start problems.. If she hears the words, restless legs, she will put her hands over her ears, and act like a 5 yr old.   My headache doc would want me to come for regular visits even after the beast subsided, but every time I would go and be reminded, I would feel the stirring begin in there, and would have to up my preventative dose of verap.   I stopped going to see her for the times when not having problems.  I would just get my regular doc to prescribe it.

Maybe, its all psychological, but some people are just not able to be reminded of this problem without getting some kind of physical response.  

I will say, however, that I thank god for you and all of the other people who do stick around and off er help and support to those in need of it soooo badly.   So dont get  aggravated at those who use you and then run,  know that you truly are a saint, and never are unappreciated. :-* :-* :-* :-*

Maybe this time I can kick his ass soooo hard that he wont be hiding in the corner ready to invade at any mention of his name,  but he will be a mile away, and I can talk about him and help others deal with him without bringing unwanted attention my way.  Then I can get to be a saint like you and everyone else who helps so many poor people  in so much pain cope just a little better.

chris

For many years I was one of the guilty parties. I sincerely believed even thinking about CH could trigger a cycle. Certainly not a logical place to be...no argument there...but that's how bad they scared me.

Like wih everything else on this board, it was one person reaching out to me..(that incedibly persistent Linda Howell chick)...that got me on board full time.

You just never know where people are coming from I guess. :-/

Joe

I´m new to this site but not new to the pain. When i finally got my arse in gear and found this site i sat and nearly broke down with relief. every one has been soooo helpful and no words can thank you all enough. I have allso seen posts where people have come on stating hi again im back or things along those lines. i thought i came out of cycle last sunday as i hadnt had a hit since then but i came on the forum 2-3 times a day too see whats happening or if maybe in my inexperienced own mad lunatic way help some one. this morning after night shift Sharon hit me again (the beast) and made sure i knew she was still around.
apart from my holidays, getting rat arsed (drunk) and running my model boats im on this site for life or untill they find a cure  :-? and maybe i can some day in the future help some new person who is starting out with this. well thats my thougts, sorry it was soooo long.  :-X ill shut up now.

mark (loyal till the end)

Quote:

it was one person reaching out to me..(that incedibly persistent Linda Howell chick)...that got me on board full time.

I really WAS a thorn in your side, wasn't I Joe?  Sorry about that.  I'm not sorry, however that it worked, because you have been such a help around here ever since.  Especially newcomers.  Your presence here has been a real attribute to this site.

While I understand folks getting on with their life when not in cycle...I just wish I could convince them to check in say...once a week.  See what's new and offer their unique insight to someone else who might be in the pits of hell.  

Linda

Linda_Howell wrote on May 5^th, 2009 at 11:49am:

Quote: it was one person reaching out to me..(that incedibly persistent Linda Howell chick)...that got me on board full time. I really WAS a thorn in your side, wasn't I Joe?  Sorry about that.  I'm not sorry, however that it worked, because you have been such a help around here ever since.  Especially newcomers.  Your presence here has been a real attribute to this site. While I understand folks getting on with their life when not in cycle...I just wish I could convince them to check in say...once a week.  See what's new and offer their unique insight to someone else who might be in the pits of hell.   Linda

Wow... look at that... one Angel calling another one white  :o

Don't know where I'd be without either of you  ;)

Some folks have it in them to give back.  Other quite simply don't.  It doesn't make them bad people.  Just short sighted is all.

You can bury your head in the sand and hope remission lasts forever or you can stay in touch if for no other reason than to stay abreast of new developments.  It's up to you.

Either way, thankfully there is a core of Angels on this site that do care and do reach out and do help in a very real way.  I thank God DJ gave them a platform on which to perform these miracles  ;)

-Dennis-

This REALLY hits the nail on the head.  I spent 4 years undiagnosed, having every kind of test imaginable and being told I had allergies, depression, stress, anxiety, sinus problems, inventive mind, etc.  When I finally did get the diagnosis, it was from a neuro who had a little but not enough knowledge, who prescribed the wrong oxygen dosage, laughed at me when I asked if this causes permanent damage, and flat out told me I was lying when I said it's one sided and that it wakes me up.  He insisted that doesn't happen! Now it's been 6 years - I just found this site a few weeks ago - I have never met of heard of anyone else who has this, and am ecstatic to find you all.  I feel like I found my long lost family.  I am completely chronic - 3 - 6 hits a day with a one or 2 day break about every 6 weeks for 6 years.  I have a full time job and a daughter in medical school.  I cannot imagine leaving this board now that I've found it and have every expectation of finding as much help as I possibly can, and sharing anything I find!  Thank you all for your unfortunate reason to be here! And yes, I think it would be great if we did come up with a reason to draw people back and am completely willing to get involved.

I guess I can understand people leaving when they are out of cycle ... I GUESS ...

BUT, it also seems to be a bit of a slap in the face to those of us that are here everyday.  We WANT to help people through this terrible condition.  Yet it hurts a bit, when we give all the help we can, and then that person goes out of cycle and disappears.  Why not stay and pass on what was given to YOU?

That is the only pay I ask of people .. PAY IT FORWARD!

If you see someone needing a shoulder to cry on, or just someone who understands what they are going through, then ANSWER them!  Let them know that they are not alone!  I am sure you remember how alone you felt before discovering this site.  I am sure you can relate to many of the people coming in here, looking for help, guidance, or support.

Besides, I would not have the delightful people, in my circle of friends, if I did not stay active here.  I have gotten close to some wonderful people, that my life would be so much less, if I did not have them in my circle.

Thanks, Barbara, for bringing this up!

Chuck

I can see both points of view. The veterans really helped me calm down a few ago when I read posts and saw options.  But at the same time, the more I think about CHs, the more anxiety I get and more hits. I can understanding people wanting to forget they exist when their cycle ends. But at the same time, who is going to help the newbies. Its a tough issue :)

I was here once years ago when I first got hit with the headaches.  I ddin't stay after I found out what they are and that mine were not bad.  Now I realize what a great resource this is to others (and to me) especially since I'm having a very long cycle this year and I can't predict what will happen to me in the future or what to do next.  I am so grateful for everyone on here, and that I can post what is going on or respond to others posts who are going through what I am.  I have been and still am so scared this year because of the severe changes to my headaches this year and the multiple tests we are now doing to make sure it is just my clusters that are changing this year.  It has been tough on me, my partner (who is just seeing this for the first time) and my children.

I can't promise to always be here to help others, but I can make an effort to try and do my best to be there as I grow in my understanding of what is happening in my head  :P

jesbri wrote on May 5^th, 2009 at 6:32pm:

I can't promise to always be here to help others, but I can make an effort to try and do my best to be there as I grow in my understanding of what is happening in my head

That works for me!

Honest, and heartfelt answer.  Thank you!

Chuck

For me, over the years, it has become two-fold.

I am still here to help others but I am also here because after many conventions where I have met many of these people, they have become close friends. It is now a community that I belong to with friends that I share with.

If I stayed away at this point in my life, something important to me would be missing.

Convicted and convinced! I'll do my part to stay on board and help out.

That's the other thing..friendships.  I have met and consider so many of them not only friends...but family.

I would not trade my CH for not having these friends.   They are now part of my life, like it or not they have me and I have them.

Some of them have helped me through personal problems.  Others have helped me help others through giving back what we have recieved.

This entire place is awesome because of exactly this!

even out of cycle i get allot of help from people here on the board. there's allot of resourceful people here. even though i haven't had an atack in a year and a half theres other things i need help with and hopefully i'm helping others out with my posts.  i admit this board has become more of a social network for me but i try to advise on ch as much as i can. my advice probably isn't the best but it still feels good to identify with sufferers and try to help.

i feel that i need to hang out as much as i can and build up my credit for when i'm back in cycle cuz i know i'll be a big pain in the ass when i do.

i guess i can understand wanting to put a cycle behind them though. before i came here i aways did. but now i'm fascinated by this condition. everytime i log onto this site i learn something new.

edited to add: any of you remember when i was stuck in denver last thanksgiving and i needed a shoulder to cry on? didn't have anything to do with ch and yet you all opened up your hearts and told me it was going to be alright. even the lurkers sent me pms. being alone doesn't usually bother me but those family holidays can be rough on a fella.

I want to add this: help comes in many forms.

If someone wants to help others in here but doesn't think that they have enough to offer, reconsider. Kind words, reaching out, just simply asking how someone is coping... that can be as helping as posting about the latest news about new treatment or experiences about something which worked and/or keeps on working.

We all know that "life gets in the way"; all sorts of things happen and time can be limited. But still... making some time to the site which helped you on your time of need every now and then can't be too bad, right?  ;)

Sanna

I'm new here just found the site last week, but I have been in recovery for a good spell. So please pardon my cross references but I think they fit rather well here.

If it wasnt for the newcomers there would just be the same people talking about the same things over and over again. So the newcomer is the most important person in the group. They allow us to freely give what we have freely been given.

After a bit they are offering advice to others the same as it was offered to them, those that take and run are just that takers they got what they needed and feel they are free to go ... until another attack another crash another crisis. Hopefully they will understand after a few times they are needed to help others the same way they need help.

So I guess what I'm getting to is this:

You do not truly have something until you give it away, and to give away what you have freely received is divine. This is how I get recovery I may still be in pain but my soul is healed and ready to give to others in need.

my 2 cents

~James

Very interesting thread Barbara D, and to be honest a very difficult one to answer.I was one of those offenders 3 years ago during my last cycle, if if my memory serves me correct I don't think I posted I took what I needed and buggered off.  :-[

In my defence though I was very busy completing a Degree through my work place and I just didn't have time to become involved in discussions as I was too busy completing wild acts of plagiarism. ;D I do understand where you are coming from though, I think some people have their own agendas and although they may not stay this time their next big hit may be the one that they choose to stay.

I think I chose to stay this time because i realised what a great bunch of people you are. There's so many positive vibes flying about this forum that i think DJ is going to need an air traffic controller to deal with them all. For you "OLDTIMERS" the one draw back about all us newbies hanging about is now and again we will get this inspirational idea for a new thread. As soon as we check our preview and then hit that "Post" button i can here the groans "Ahhh Jeessssuuuss"...! not this again, humour us like you continue to do..


Lefty...!

Jimi wrote on May 5^th, 2009 at 7:19pm:

For me, over the years, it has become two-fold. I am still here to help others but I am also here because after many conventions where I have met many of these people, they have become close friends. It is now a community that I belong to with friends that I share with. If I stayed away at this point in my life, something important to me would be missing.

THAT was what I was trying to say... See Jimi just cuts thru the B$ for me.... ;)

Hugs BD :-*

Jimi's pretty good at that.

For you "OLDTIMERS" the one draw back about all us newbies hanging about is now and again we will get this inspirational idea for a new thread. As soon as we check our preview and then hit that "Post" button i can here the groans "Ahhh Jeessssuuuss"...! not this again, humour us like you continue to do

That's an excellent reminder.....it's another form of "cliqueshness" ...(anyone gonna call BS on that word? ;D)....which is death for any kind of open forum. Thanks for the point Lefty.

Joe

Quote:

busy completing a Degree through my work place and I just didn't have time to become involved in discussions as I was too busy completing wild acts of plagiarism.

I don't know why that cracked me up. Maybe because I could relate to it.

Lefty......I like your avatar. ;)

Hello to all of you!!!!

I don't know where to start first so bear with me.  Thank you Barb for giving me the boot today that I  needed.  I am one of the old timers.  I am very proud to say that but not proud of the fact that I have been a lurker for the last 4 years.

One thing I can say is that I know for a fact...Once you have been here, once you have met these people in person you are changed forever.  When I came to this place 10 years ago I was stunned that there were other people in the world that were going through the same nightmare I was.  People who knew exactly what it felt like, people that had gone years without help, years without being understood.  There weren't that many of us 10 years ago but there were enough that all of the sudden the black cloud lifted and you knew that you had a place where you could go.  I'm sure that all of you can relate to what I am trying to say.  That being said, going from having it to not is more torture than should be allowed.

My reasons for being a lurker may or may not mean anything to those of you reading this.  It never had anything to do with taking and not giving back.  DJ and members of this board so many years ago gave me back my life, for that I would give mine to help another sufferer.   There is nothing I wouldn't do to help another sufferer.  There are a few here that know that and through them, miracles do happen.  Sometimes things aren't as they appear.  Sometimes you have to ride in the back of the boat just to keep the sailing smooth.  I chose to do that, and that my friends of old is why I lurk.

Lot's has changed over the last ten years and I will tell you that from where I sit today, all for the good.  If there is no retribution for this post maybe I can finally move from the back of the boat to getting an oar in my hand.

My heart goes out to all of you and I miss so many of you so much you'll never know how much you've meant to me.

Always in my thoughts!!!
Piper

Piper,

Sweetie, I KNOW what you've done over the years and the HELP you've given to those suffering. You haven't just been lurking - you've BEEN there. But it's always good to hear from you. Just knowing you're there makes us all feel better.

Hugs BD :-*

Well,  I'm doing better and I'm guilty about the rarely back here thing. I check back once a week or so but rarely post.

In my defense, I've gone back to school and work and now that I'm doing much better I am planning on going for the premed requirements with the idea of eventually going for a MD/PhD in Neuroscience so I can study these things and hopefully find more reliable treatments or better.

Katy

Barb

[smiley=hug.gif]

big time!!!

Piper, you are legendary. It's really nice to see you, and I hope you'll hang around so we can all get to know you better!
As for this subject, yes, it IS a sticky one, bARB! lol! tHE GOOD NEWS IS, YOU HAVE THE FORTITUDE TO BRING IT UP.
As I see it, there are the people who wish to forget the beast exists while they are in remission, and the ones who wish to keep the armory full-and that includes support as well as meds-and these people NEVER let their guards down! They communicate with everyone, and appreciate the friendships which obviously develop. Some people are far more social than others, however, and when I have read in the past of sufferers who have hidden their affliction from even the closest family members, I can fully understand why they have no desire whatsoever to drop in here while out of cycle.
What their makeup is has nothing to do with their need for understanding and support, if they ask for it. This is a very personal disease. fact is, if they are reaching out, be it to give OR receive help, I think they deserve it.....this is about CH....and you just never know where a breakthrough might be found. Read, support, give take.whatever you can do.....coz, again, ya just never know!

Soapbox back under the bed.......

Cathi :D :D

As Helen would say..."I am chuffed to bits"  that you're back my friend.

 
Quote:

maybe I can finally move from the back of the boat to getting an oar in my hand.

I have an oar  that I've been waiting to give you.  It's solid gold...just like you.

Jimi wrote on May 6^th, 2009 at 12:17pm:

Lefty......I like your avatar. ;)

Now that you've brought up avatars Jimi, I have always been curious to know what's that your drinking....!

Jimi... [smiley=headbanger.gif]


Lefty...!

I hear what Barb is saying but I've also learned that people must do what is best for them.  I do wonder how they are getting on though and miss some of them too.

I'd never scorn anyone for taking a break.  God knows after a rough cycle there is a lot to catch up on in ones life.  Lots of living to do.

Piper, it's wonderful to see you again.   [smiley=hug.gif]You've been missed around these parts, girl.  We sure had a bunch of fun in Elaine's old chat.  Wow, that was a years ago.

Quote:

Jimi, I have always been curious to know what's that your drinking....!

Milk..... ::)

Guilty  :-/

I've got a heap of excuses I could try on you but I don't really think they would cut it  :-[

Kate

Barb,

You as usual are right on target.  of late I have been guilty as charged.  I've been around, but mostly hanging out in the General posts section wrangling about politics and other non-CH stuff.  Been fighting depression, but didn't want to admit it, and didn't feel like I COULD help someone else much as I couldn't even keep my own head up much.  I have tried to encourage through PMs and emails, and I do pray regularly for you all, especially when I know of specific probs, but I have fallen down on the support on the board.  I used to haunt the guest book and contact those who posted messages there, but have not even done that lately.  I am profoundly sorry.  This place literally saved my life.  I was seriously considering ending it if I could do it in such a way as to not hurt my family to badly.  (RIGHT!)  Fortunately I found the Old, old board during a month long trial of the internet that I could not afford.  I found hope and understanding.  Finally I was able to get online periodically at the library, went to the first Davcon, and I've been here since.  My wife says I spend more time with you all than I do with my own family, but what she has trouble understanding is that you ARE family.  

I've told DJ more than once thank you for my life, but I'll do it one more time.  Along with him there are a number of you, and some of the ones who are not here anymore who gave it back to me.  Guess I just need to get my head back out where the sun can shine on it and pick my oar back up don't I.

Jerry

Much the same happens on the Ouch UK website and with membership - members come and go and when they're out of cycle - They just get on their lives.

I've noticed here - and not wishing to rock the boat - that some members post prolifically on joining, gaining sympathy and advice - often with very dramatic and epical stories to tell. I'm not knocking the pain and suffering, and the way this condition can destroy a normal way of life - as a supporter, I've seen it all happen, been there - got the T shirt - but have you ever considered that some who visit this site have this condition rather than CH?


Quote:

Munchausen by Internet: Faking Illness Online The points consistently duplicate material in other posts, in textbooks, or on health-related websites. The length, frequency, and duration of the posts do not match the claimed severity of the illness. The characteristics of the supposed illness and its treatment emerge as caricatures based on the individual’s misconceptions. Near-fatal exacerbations of illness alternate with miraculous recoveries. Personal claims are fantastic, contradicted by later posts, or disproved. There are continual dramatic events in the person’s life, especially when other group members have become the focus of attention. The individual complains that other group members are not sufficiently supportive and warns that this insensitivity is undermining his/her health. The individual resists telephone contact, sometimes offering odd justifications or making threats. There is feigned blitheness about crises that will predictably attract immediate attention. Others ostensibly posting on behalf of the individual have identical patterns of writing, such as grammatical errors, misspellings, and stylistic idiosyncrasies.

For more info look here

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Dyno wrote on May 7^th, 2009 at 3:07am:

I've noticed here - and not wishing to rock the boat - that some members post prolifically on joining, gaining sympathy and advice - often with very dramatic and epical stories to tell. I'm not knocking the pain and suffering, and the way this condition can destroy a normal way of life - as a supporter, I've seen it all happen, been there - got the T shirt - but have you ever considered that some who visit this site have this condition rather than CH?

Yes, this HAS happened here, in the past, and will happen again, I am sure,  but they usually get found out after a bit.  When their posts start to sound TOO far fetched, and then start to contradict previous posts, it is usually the demise of their membership.

It IS possible, that a very talented individual slips by, but most are usually caught.

Good comment!

Chuck

aintnodisco wrote on May 6^th, 2009 at 3:12pm:

Hello to all of you!!!! I don't know where to start first so bear with me.  Thank you Barb for giving me the boot today that I  needed.  I am one of the old timers.  I am very proud to say that but not proud of the fact that I have been a lurker for the last 4 years. One thing I can say is that I know for a fact...Once you have been here, once you have met these people in person you are changed forever.  When I came to this place 10 years ago I was stunned that there were other people in the world that were going through the same nightmare I was.  People who knew exactly what it felt like, people that had gone years without help, years without being understood.  There weren't that many of us 10 years ago but there were enough that all of the sudden the black cloud lifted and you knew that you had a place where you could go.  I'm sure that all of you can relate to what I am trying to say.  That being said, going from having it to not is more torture than should be allowed. My reasons for being a lurker may or may not mean anything to those of you reading this.  It never had anything to do with taking and not giving back.  DJ and members of this board so many years ago gave me back my life, for that I would give mine to help another sufferer.   There is nothing I wouldn't do to help another sufferer.  There are a few here that know that and through them, miracles do happen.  Sometimes things aren't as they appear.  Sometimes you have to ride in the back of the boat just to keep the sailing smooth.  I chose to do that, and that my friends of old is why I lurk. Lot's has changed over the last ten years and I will tell you that from where I sit today, all for the good.  If there is no retribution for this post maybe I can finally move from the back of the boat to getting an oar in my hand. My heart goes out to all of you and I miss so many of you so much you'll never know how much you've meant to me. Always in my thoughts!!! Piper

Glad to see you topside again Piper.  I was down in the hold getting your seat ond oar out of storage.  The folks that have been here for a while knew you didn't jump ship, you were below deck with a nasty case of laryngitis.  Lets hope there are no relapses!

Anyway. welcome back topside, enjoy the fresh air and sun and join in! [smiley=hug.gif]

-P.

Barbara has brought up an issue which is far more complex than might be obvious at first reading. But I want you to take these comments as a series of observations and NOT judgments of any idea or person who has written on this extensive thread.

Last December, 15 people entered the same floor of the local hospital to have joint replacement surgery. They went through physical therapy following surgery, helping, encouraging, sharing their mutual pain. And then they went home. And they will never see one another again. Their collective job had been completed; what each gave to the other at the time of shared experience & need was sufficient.

Quite different if you need to join an AA group. The struggle for sobriety goes on for decades; folks in some groups have known one another for many years. BUT there must be room for the newly sober; there must be an opening for the new voice to find a hearing, to feel the growth in support which the old timers enjoy.

Name the support group or church or family--the same fluidity of need is there. There must be room for the older participant and the new face. Serving either group to the exclusion of the other leads to a failure for all.

When an AA group becomes too large, it must split or spin off a new group. Just like a nest of honey bees dividing to create a new hive; too many is not healthy for all.

Each type of social group has an optimal size which needs to be understood and respected if the group is to retain its capacity to meet the needs of the folks who are seeking the kind of services/support/relationships which that group offers.

DJ has recognized the need to protect the core strength of our group when he posted his standards-of-conduct message or when we gently tell migraine folks to look elsewhere for aid.

There is no clear, explicit solution to the question Barbara has lovely raised. But we need to be aware--always--that we are here, first and foremost, to offer a hand to the new soul who needs our collective experience. The rest is nice but secondary--I think.....

Today I've been thinking about the reasons that I don't post much here...    

Like others have said, this place saved my life - really - we all know that saying that isn't necessarily an exageration!  

I joined this site in 2005, got trolled - still feel silly about that - harrassed Jonny and defended the troll - the joys of being a newbie...
Since then there have been two times that I have been online whilst someone was threatening to kill themselves.  NOw that is some freaky shit - and being that I'm on the other side of the world...     This place can be really quite scary.  

It isn't much of an excuse... and like I said earlier I've got many (and they are just excuses)... but please try to understand that some of us are not as strong, extrovert, able, whatever....  (offline I'm quite shy and reserved).  I will forever be thankful for the help that you have given to me over the years.   And whilst I don't post much, I am a lurker.  I do care about you all, I do try to keep up to date with what is happening....

Sorry that I'm not able to be more proactive,  


Kate

I do envy Bob's eloquence, very well put sir. ;)

Sorry that I'm not able to be more proactive,  
Kate


You just lurk away Kate, [smiley=hug.gif] knowing you're still hanging with us is enough!

Joe

I'm here every day, several times a day.....  More than I should be... I'm a CH.com addict.  I offer help when I think it will make a difference. Many times I just feel that others here are more capable of making a difference than I.

Jeannie

:), I've been here a while, but only a short time  ;).

And i don't post much. Not sure that will change, it's diffcult to get a word in edge ways ! !

Great place. Andrew.

Been here since Spring of 2004, and not planning to go anywhere unless all computers break down everywhere.

Redd wrote on May 7^th, 2009 at 6:11pm:

not planning to go anywhere unless all computers break down everywhere.

DAYUM!!!

I guess that means we are stuck with her ...

Well, it could be worse ... We could be stuck with BarbaraD ... Oh wait we ARE stuck with her too!!

We are also stuck with LeLimey ....

And Jackie ...

And DonnaH ...

And Stephanie ...

And Melly ...

And Cathi ...

And Linda ...

And all the Sandys ...

And the two Charlottes ...

And DeltaDarlin ...

And Cat ...

And Elaine ...

And Jeannie ...

And MosaicWench ...

And ... And ... And ...

I am going to stop now ... I have already worked myself into a serious depression ...

Poor Lil Ole Me ...

ALL of us and one little ole you.

   I wonder who has the biggest ulcer.  

;D

Kate in Oz wrote on May 7^th, 2009 at 9:26am:

Today I've been thinking about the reasons that I don't post much here...     Like others have said, this place saved my life - really - we all know that saying that isn't necessarily an exageration!   It isn't much of an excuse... and like I said earlier I've got many (and they are just excuses)... but please try to understand that some of us are not as strong, extrovert, able, whatever....  (offline I'm quite shy and reserved).  I will forever be thankful for the help that you have given to me over the years.   And whilst I don't post much, I am a lurker.  I do care about you all, I do try to keep up to date with what is happening.... Sorry that I'm not able to be more proactive,

I hear what you are saying Barb...and I always listen to you (he sheepishly raises his hand, guilty your honor). Actually, most of the time I post (originally started '02-03 I think) is when (was) OUT of cycle (and I ALWAYS lurk). When in cycle I do not trust what I might say, feel like a whiny wuss, seem to view everything as how it relates to me, me, me (which really ISN'T me). Just don't know what to say in support. Sooo...I tell stories as therapy, with hopes they might interest or amuse or cause reflection for folks who REALLY need a distraction.

What Kate said above (and Kate, I love the handle and appreciate and look forward to your posts) could have come right out of my mouth, word for word. That's me....

And Cathi…you are eloquent and touching on that soapbox, must be a long legged bed!

"Some people are far more social than others, however, and when I have read in the past of sufferers who have hidden their affliction from even the closest family members, I can fully understand why they have no desire whatsoever to drop in here while out of cycle.
What their makeup is has nothing to do with their need for understanding and support, if they ask for it. This is a very personal disease. fact is, if they are reaching out, be it to give OR receive help, I think they deserve it.....this is about CH....and you just never know where a breakthrough might be found. Read, support, give take.whatever you can do.....coz, again, ya just never know!

Soapbox back under the bed.......

Cathi "  

Best,

Jon

Well...what an interesting subject. Very sharp. Well put Barb.

A while back I started a thread titled "Silent Prayers". I don't support out loud enough. I can't think of things to say but silent prayers do go out. Knowing that something read by another is like...well.. two prayers, I'll see if I better my average in the future.

I continue to come here for the exchange and the laughs with an incredible cross section of people with a common nasty malady.

Steve G

Well, since I'm one of the people that this thread is directed to, here I go with my explanation.  

I've been getting CH for 9 1/2 years.  I was formally diangosed with it 4 years ago.  I belong to a fair amount of online message boards/forums (mainly guitar [since I've been playing for 30 years], and ham radio [yes, I'm a techno chick - I've had a ham radio license for 31 years]).  When I found the old board in February of 2007, I'd had a couple of very nasty Kip 9 attacks, WHILE taking Prednisone, to help break a wintertime cycle (I'm episodic) that started when our unusually warm 40F January temps literally took a nosedive to -10F or -15F in the first week of February.  I was surprised and shocked that I was having CH while on Prednisone (I'd never had this happen before in the almost 2 years I'd taken Pred to stop a cycle).  So, I posted on the old board as a newb, a question as to whether or not anybody had ever suffered CH while taking Prednisone.  I found out that CH while taking Prednisone was not a rare occurrance.

But, my post ended up being like opening Pandora's Box.  People started asking me about my headaches - OK, fine and dandy, I told them.  That's when (I hate to say this) it got bad.  Sorry to say this, but the O2 missionaries piped up, badgering me almost non-stop, about how I NEEDED to use O2, and that my neurologist (a board certified headache specialist, director of a headache center, and Associate Proffessor of Neurology for the Medical College of Wisconsin) was an idiot becuse she didn't have me on O2 (I'd discussed it with her, and we'd both agreed that since my headaches weren't chronic and out of control, it wasn't necessary - I'd just waited too long to use the Migranol I use for an abortive, when I had my CH while taking Prednisone).  I asked people as the OP, if we could could just end the thread (and thanks for the information about CH during Pred usage) and "please stop telling me that I have to use O2."  That didn't work at all.  There were still certain hardcore people who continued with the O2 badgering, only now they also insisted that I was being foolish by not using it.  When that happened, I got fed up, and quit posting on the board in late Feb. 2007.

Why did I come back to the (now new) board?  I don't know.  I guess, because I'd just started a cycle this past March (the first time I've ever had CH in March), and I just wanted to talk (either commiserate or provide support), to somebody who's going through the same headache nonsense I'm going through.  CH is so rare, that other than online, I've never run into anybody else in person who also suffers from it.  That makes it hard at best to try to talk about it to the average person.  In most cases, they really don't seem to understand just how nasty CH is, and how it really can mess with your life.  But all of you - you've gone through it.  You know that it's like to live with CH and when I, or somebody else on this board has a Kip 9 or a Kip 10 attack, you KNOW just how BAD that is.  To the average person that means nothing, unless they literally see you suffering from the attack, those Kip values are almost meaningless to them.  Besides, I personally believe that support is so much better, when you get it from somebody who's going through or has gone through the same thing you're experiencing.  As long as I don't get badgered about O2 useage again, I will try to show up here at least semi-regularly (maybe not every day, but at least once or twice a week - I'm usually pretty busy).

ellenjoanne wrote on May 9^th, 2009 at 11:52am:

and ham radio [yes, I'm a techno chick - I've had a ham radio license for 31 years]). .

Not a ch'er, but a supporter, but I am a licensed ham radio operator, got my extra class license about 8 years ago.  Was real involved for several years until I burned out.

I can understand your frustration and aggravation with the O2 pushers (some do go a bit overboard).  HOWEVER, given that O2 is virtually harmless (well, unless you get stupid and light a cigarette while on the O2), and that it works so well  (in about 70 % of the cases) without all the nasty side effects, it's understandable why they push O2.  I would give anything if my migraines would respond to O2 (given that we have tanks here).  Anyway, this is like any other board, take the good and ignore the bad (just like the ham radio boards)

Carolyn
KM5YL

Hi Carolyn,

I'm a young-oldtimer.  I'm 45 years old. I got my license back in 1978, and I've been an Extra since 1994.  Up until 2001, I was a VE too.  I go through phases with Amateur Radio, where I'm really into it, or (as is the case now, because I got over my guitar playing blahs) only very casually into it.  I also have 2 engineering degrees.  Yes - the O2 pushers do get a bit pushy at times.  O2 is great stuff, and for some sufferers, it's the only thing that will stop a CH attack.  I didn't mind the suggestions, but when I outright asked them if they could give it a rest (since I really didn't need the O2), they kept on going (which I didn't care for).  Nowadays, if I'm worried that somebody will bring up the question/accusation why as a longtime cluster headache sufferer I'm not doing O2, I'll add to my post the statement that please, I don't want to get into a discussion about why I'm not using O2.  

73 & 88,
Ellen - AF9J

You make an excellent point Barbara, but Sanna makes an even better one: life DOES get in the way, be it positive or negative.

My own excuses:
In late november I started to get into what I'd call a winterlow, not knowing then it would descent into a stay at the very abyss. Believe it was bad, and though I'm getting better every day, I still feel it's throes. Full blown depression.
Besides that I seperated with my gf (now ex) and phantastic supporter for three hellish cycles. If it weren't for Sonja, I had already tightened a noose to the ceiling between hits hahaha. I'll always love her for that, and off course other things.
In march my father's gf died off cancer, the poor man's second woman that died in a little over ten years. Hard times on us all.
Lastly there was a thread some time ago which put me off somewhat. It just didn't feel as much at home to me at the time. Dunno what it is, but it gets the hair in my neck upright when I see people gang up on one person, whatever the cause was.

I did lurk however here, but somehow could not bring enough energy to the table to make some coherent support to anyone.
I'm planning to change that now, wanna become a full member again and see if I can help where ever I can.

Best to you all, Pascal.

I think some clarity is in order.
This is my opinion, only, Barb, if I'm wrong, I will apologize,
BUT
I highly doubt Barb is referring to people we see. There is a huge difference between someone whose first post reads "help, get me outta here......"these people are looking for a quick fix to the problem. That's where the conflict begins. CH is an ongoing affliction. There is no antibiotic, no pain pill, no instant cure. OF COURSE a newbie is gonna want a cure immediately. They haven't learned all there is to learn yet......soo, some stay to learn and share their experiences with others who suffer, and some run like the wind to a myriad of different sites to find that cure..........then, alot of those people come back and learn to deal with the Beast.
Whatever level of support a sufferer requires is HERE.and, when there is a cure, it will be HERE people learn of it. Til that happens, I'd like to think NOONE walks away disappointed, and EVERYONE shares what they can with their peers.
Let your voices be heard! The bigger the choir, the larger the sound........so, sound off whenever you can!
OK< Barb>?
Cathi

That was just beautiful Cathi -- you said a mouthful kid...

Hugs BD :-*