While reading the board for the last few weeks, I learned of fights and good wishes, newbies and absent but treasured long time board members, warm fuzzy feelings and crushed hearts,  lost loved ones and warm, new babies, family members who are finally experiencing long overdue pain free time and those facing major surgery and long term illnesses.

I know all of these things are a part of life but hope each and every one of us can take some time to reflect on all of these experiences and understand that we are all in this together and we need to take care of one another.

While we may be some of the strongest people on earth to live day to day with the pain of CHs, we all need the support, love and caring of each other to survive this tough world.

If we lose the love and respect of each other here on this board, many will be lost.

D.J. has given us a gift.  His gift is this forum to share our experiences, caring and most of all our friendships.  Please show him the respect he deserves by helping people who come here in need of help and support.

I am asking for a favor.  The world is tough enough as it is so instead of kicking someone while they are down, offer them a hand up, some support and a little bit of CH love.

If this post offends anyone, I am sorry.  The last few weeks have been rough on many of us for different reasons and I think some of us have emotions that are feeling a bit raw right now.  I just think a little TLC at this time would go a long way in helping many people.

Okay....time to get off of my soap box.

It's that time of year again. Bill and I were just talking about that today. Fall is always a rough time for clusterheads. A lot of newbies come in when their cycle starts up.

Some don't know the protocol on message boards and don't start out right. They may be on meds that effects their thinking as well as us.

If they are a troll we will know it soon enough. If you are not sure then treat them as legit. My father always told me to treat people like I wanted to be treated. After that, if they were just onery, ignore them or kick their ass. Whichever made you feel better. My father was a wise man.

hmmm.   I wonder if he knew Guiseppis father Jimi?


They both seem wise.

Cynjeep,
Beautifully put.  Thank you!

I've always tried to live my life as my mother taught me a long time ago. Jimi's dad taught it to him, too.......it's really simple. "Do unto others as you would have them do unto you."

Here in Clusterville, it goes a bit further......How in the world can a Clusterheadache sufferer even think to inflict any more pain, of any kind, on a fellow sufferer?

When I arrived here and made my first-ever post, my words did not come out the way they were intended.  I unintentionally offended and enraged some supporters. I spent the next few weeks apologizing/trying to explain, and the flames continued to lick at my heels. One person in particular told me to go away-Period- just pack up my toys and leave. I haven't. It's been over 5 yrs since that happened, but each time someone is attacked here, I remember, with pain, my experience. I wouldn't wish that on any living soul- let alone, someone who suffers either directly or indirectly, with CH. I also know CH can strip one's nerves clean, leaving one tired and irrritable, and I also understand how important it is to keep this a sanctuary for Clusterheads...but let's try a little tenderness, can we?

As for trolls........A bit more time, a little more observation........the trolls will "out "themselves, and then DJ can simply put them out the door and lock it.

If Woobie were around right now, she'd say....

Peace Out.......

Cathi

Cyn,

I agree with you.  I may have been guilty in some long past posts of getting down and dirty too early with some people, but I soon learned my lesson on that.

I save my troll stick the likes of Ali now, and keep my trap and fingers close to my vest with any newcomer.

This place is a safe haven for me.  Some of my best friends reside on these boards, as well as on my IM and my phone list.  I try to not call and pester them if it's not urgent.  

Your words were dead on.  Thank you for the reminder.

Pegg

Great post, Cyn. :)

And I do agree with you: this site is a gift for all of us and we need to take good care of each other, with the abilities and the time that we have while were are visiting this site. So many of know the good power of this site; the people, the help and friendships... it would be terrible to let that go.

Little goodness goes a long way, that's how I see it. And I promise on my behalf to keep my posts as happy, caring, kind and optimistic as I possibly can.

Sanna

This is the time of year we get a lot of newbies -- and a lot of older folks coming to visit. I agree we need to polish our manners (except where politics are concerned and I think we've all politicted out for a while there).

For some reason this season tends to bring out the best or the worst in people. Let's hope this year it's the best.

Hugs BD

thanks Cyn,  I knew there was a reason I love ya!  I appreciate your thoughtfulness.  

Honestly, the last little bit has been trying for me, so I have stayed away from the "getting to know  you" page and the Meds board because I know I am not very tolerant of others right now.  When things settle down I'll be back.  Till then I'll try very hard to keep my impatience to myself.

Jerry

Ya know, Jerry.  I don't think it's about impatience.  I think it's more frustration.

Many of us here have had CHs for decades and know what works for us and what works for others.

When a new poster mentions that they have found a "cure", I remember being in their place many times over the last 38 years that I've been dancing with the devil.

I was in such pain that anything that gave me an ounce or a minute of relief was a "cure" to me.  I was desperate and grasping at straws trying to hang on to anything that would give me relief, get me off of the bathroom floor, stop me from rocking, pacing, puking and hurting.  All I wanted was to be able to sleep, brush my hair/teeth without crying, be able to go to work, follow through with plans with family and friends without having to call them over and over again to cancel, etc.  I could go on and on but we all know the routine.

My list of many "cures" before I saw about 7 neurologists and was properly diagnosed, given a script for O2 and a standby script for a Pred taper were:

Taking way too many aspirin.

Rubbing Ben Gay all over my scalp....do not try this at home or anywhere else....smarts like heck and smells bad.

Juicy Fruit Gum - a friend of mine gave me a stick of Juicy Fruit Gum and I had no CH....for a day.  I got slammed the following day but for a day, Juicy Fruit Gum was "a cure".

Avoiding any foods with preservatives, dyes, etc. - My diet consisted of lettuce and water.  I had no CH for a day so changing modifying my diet was "a cure".

Chiropractor - again, I had one pain free day but for that one day, this was yet "another cure".

The list goes on and on.

When you are a newbie to CHs, in pain, sleep deprived, at risk of losing your job due to taking too many sick days, miss family functions, hurt, ache and feel like you want to end it all, anything that gives us relief no matter how outrageous it may be seems like "a cure" to them.

This board has been around for a while and we have seen many newbies make claims to meds, treatments, beverages or other methods of finding relief.  I wonder if having seen the same claims of cures over and over again has kind of numbed us to the fact that these people are so happy to have found something that provided them even a second of pain free time that we forget we were once where they are? They know how much CHs hurt and just want to try to help others with some kind of relief from the pain and for that, I applaud them.

I know we don't want to see any false information posted here and I am glad to see people point out to newbies that these "cures" probably will not work  We know that some of the methods they rave about do not work long term, some are dangerous, etc., but when I read that they found an inkling of relief from this damned pain, I am happy for them even if I know that it was probably a fluke.

I think we are so anxious to cut to the chase that we forget we are dealing with people who are confused, hurting and probably a bit euphoric from a little pain free time.  It's hard to try to gently let someone down by telling them that their claim of a cure is B.S. and then to try to to lead them down the right road with lists of docs in their area, meds that have worked for some here, help with getting O2, etc. after having done the same thing time and time again over many, many years but I think we have to give this a try.

These people are hurting big time, they may resist and get angry.   Believe me, I am sure many of us have endured the wrath of many newbies and that is where the frustration sets in for a lot of us.  We usually know what works and can't understand why they won't take our advice.  All we can do is put it out there for the taking and hope they understand that we are trying to help.

I remember reading a post many years ago here on the board about O2 and thought, after throwing so many meds down my throat that were prescribed by numerous neurologists I had seen, how can something as simple as O2 help and why didn't all of these docs mention this to me?  Once I learned to trust people here and the good advice they gave, my life was changed.

I just hope we try to remember that there is a real person on the other end of our e-mail or post who is reaching out for help just by being here.  If we met them in person/face to face and saw the pain in their eyes, we would do anything to help them.  I have seen some of you in action and know that you are the greatest friends when someone is in need.

You are not impatient, Jerry.  Just frustrated that CHs have tried to ruin another person's life.