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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Have some compassion
        
(Message started by: StressFree on Jun 26^th, 2005, 3:13am)

Title: Have some compassion
Post by StressFree on Jun 26^th, 2005, 3:13am

I'm a returning sufferer. It's been years, now they are back. In any case, I visit the board now and then when pain free. I visit near daily when in a cycle. I am always surprised at the caustic, sarcastic, flaming, uncompassionate, etc. notes that are often thrown at many who post here. Those that have unusual suggestions, or odd cluster variants, or additional symptoms with the pain of cluster headache are often victims of the cluster clique. I would think all of us here would recognise the variation in pain, location, duration, complexity, and treatments of CH. Some have posted with possibly alterior motives (like selling stuff). Blow them off. But you should know that saying, "You don't have cluster headaches" is rediculous. That's like the doc telling you that they are "in your head". Those comments don't help anyone. There is no need to be a jerk to anyone. Not only might it ruin their day, it probably increases your stress levels. Please, treat those who post here with compassion. Now don't you feel better? :-)

Title: Re: Have some compassion
Post by don on Jun 26^th, 2005, 9:19am

Bite me.

Title: Re: Have some compassion
Post by burnt-toast on Jun 26^th, 2005, 10:28am

on 06/26/05 at 03:13:40, StressFree wrote:

I am always surprised at the caustic, sarcastic, flaming, uncompassionate, etc. notes that are often thrown at many who post here. Those that have unusual suggestions, or odd cluster variants, or additional symptoms with the pain of cluster headache are often victims of the cluster clique.

I visited this site many times over the years before signing on. The folks that get rudely chased off are treated so because their intent/interests are blatently obvious.

I consistently see immediate support for honest sufferers of all headache types that are seeking answers. Those that appear to be clusterheads are asked to describe their condition/treatment, welcomed and pointed around the site. Non-clusterheads are pointed to other sources of potential help.

I have posted a few strange treatment options without ridicule and in fact have received encouraging support along with skeptical replies from folks that have been there/done that.

As far as caustic, sarcastic, flaming, uncompassionate notes thrown at many who post here - Ya gotta take things in the proper context. The vast majority isn't personal and in fact is part of the support.

Now.....

What be thy symptoms and thy treatments so thou can be duely subjected to potential mistreatment?

P.S. only kidding about the mistreatment part!

Tom

Title: Re: Have some compassion
Post by don on Jun 26^th, 2005, 10:45am

And in addition to all that.

Bite me

Title: Re: Have some compassion
Post by burnt-toast on Jun 26^th, 2005, 10:47am

Don,

You're my new hero.

Tom

Title: Re: Have some compassion
Post by don on Jun 26^th, 2005, 11:45am

Quote:

Bite me

Stated with love and compassion.

Title: Re: Have some compassion
Post by Jonny on Jun 26^th, 2005, 12:21pm

on 06/26/05 at 03:13:40, StressFree wrote:

I'm a returning sufferer. It's been years, now they are back. In any case, I visit the board now and then when pain free. I visit near daily when in a cycle.

To me that says it all, where the fuck are you when your pain free and there are people here suffering?

You got huge balls to judge anyone here when you yourself run away from those that need your support you scum sucking pig!!!!

Go save a fucking tree cause you sure as hell aint helping anyone here when you run away, fuck face!!

Title: Re: Have some compassion
Post by don on Jun 26^th, 2005, 12:24pm

Quote:

fuck face

Again stated with love and compassion.

Title: Re: Have some compassion
Post by Jonny on Jun 26^th, 2005, 12:35pm

on 06/26/05 at 12:24:27, don wrote:

Again stated with love and compassion.

Yeah, along with my boot in his ass as he walks out the door PF!.....FUCKER!!!!

Title: Re: Have some compassion
Post by burnt-toast on Jun 26^th, 2005, 1:13pm

OK, OK,

[smiley=moonwiggle.gif] I wasn't kidding about the mistreatment part.

I think this love & compassion thing can work. [smiley=laugh.gif]

Title: Re: Have some compassion
Post by cazman on Jun 26^th, 2005, 3:11pm

for me do me a fovor blow me first then bite me now i feel better

Title: Re: Have some compassion
Post by LeLimey on Jun 26^th, 2005, 4:25pm

Thank you Don for being here while you are PF. I need you and your support. I'm not PF, I still hope I will be soon. You can be damn sure when I am I'll still be here telling the next poor sod their turn WILL come. If we all bog off as soon as we get PF who will be here to help us when we aren't? And will we deserve it?

sorry didn't mean to post before saying and THANK YOU JONNY!!! FINALLY pain free after 30 years. If anyone deserved to take a walk and forget it it's you... Will you? Damn sure I know the answer to that!

Title: Re: Have some compassion
Post by bnfreeman on Jun 26^th, 2005, 6:12pm

This made my day!! HAHAHAHAHAHAHAHA! lol! [smiley=laugh.gif]

Title: Re: Have some compassion
Post by Leggs on Jun 26^th, 2005, 7:46pm

Yikes...Okay, can someone offer me just a word of explanation. Kind of confused how all this banter goes on, but when I merely put that the neuro I went to was an not a very nice person, I find when I posted it it turns up, "was not a very nice guy" Let's get it straight, he was an not a very nice person.<<so if that changes to not a very nice guy, he was a circlular spinchter on the exit of your large intestine

I can understand you all running people off, eek, I did the "run away when the beast leaves" myself, but I am just doing a lot of reading now, with my seasonal month just a week or so away. I see how I can help even when I am not suffering.

Okay, crying here, I recall when I had a kip 10 session for about three days out of two weeks of a CH season after I went on hormones(I TOLD them I could not do hormones), the classic, 2 am wake up, no sleep, knife in the eye, one stuffed nostril, half shut eye. I HAVE NEVER FOUND A THING THAT HELPS!!! Well, I think water times three reduced the severity.

What did help was knowing others were going through the same hell that I was UNDERSTOOD and they talked me through the dark hole I felt I was descending into. I swear, I just really would have killed myself if I didn't have a family, if I didn't have kids.

I recall once going to the emergency room, thinking, "Man, if I just run into the bridge abutment, I will knock myself unconcious, and my head won't hurt anymore." Then I get to the emergency room, and they give me a "drug test" because ONE of my eyes was dialated, DUH, one eye, and droopy eyelid?????? I TOLD them to call my doctor, he would not CARE it was 2am!!! They refused. Turns out the idiot ER doctor ended up losing his license for using cocaine a few years later. While I was waiting, I was FRANTICALLY rubbing my face in my hands until it hurt, screaming "why why why are they doing this to me!!! aaaaaaaaaaaaaa
aaaaaaaaaaaaaaaaa!"

I used to WANT to beat my head on the wall, but just thought that was TOO nutty, now I don't want to, because I don't want to frighten my kids, but I have hit myself in the face, it's like a feel free to, it's a SYMPTOM!!!

Right now I am so damn scared of the beast around the corner, because I have been waking up in the middle of the night with my right nostril stuffed, and mild pains around my eyes. I just sat at the table the other night at dinner, just crying, trying to keep my composure, and THIS is just because I am SCARED of them coming?!!!

Damn right I would run someone off for trying to sell something. And don't blame people who would want to drill me about what makes ME a clusterhead. I am just thankful it only happens a couple times a year to me, and I am thankful to the folks who helped me through the hell I went through. Looking back, it's so frightening to think HOW BADLY I WANTED TO DIE!!!!! I wanted that more than the pain, but my kids needed me, and CLUSTERHEADS let me know there was a better day coming. I won't be a candyass this time and fade away<<<<so will that be changed to "not a very nice person?" [smiley=laugh.gif]

Title: Re: Have some compassion
Post by Leggs on Jun 26^th, 2005, 7:48pm

Okay, it's clarifed, I can't say the word that begins with A that is the circular sphincter at the exit to the large intenstine, but I can say candyass?

Title: Re: Have some compassion
Post by don on Jun 26^th, 2005, 8:18pm

You mean a*sshole? 8)

Title: Re: Have some compassion
Post by StressFree on Jun 26^th, 2005, 8:40pm

Quote:

What be thy symptoms and thy treatments so thou can be duely subjected to potential mistreatment?

Thanks Tom for the constructive dialog. I recognise the therapy of banter - even harsh banter. It's unfortunate though that many won't stay around since the hard core folks have marked their territory. I think the "clique" word struck a nerve. -OUCH-Symptoms:
Sudden onset - jaw, temple, eyeball. A feeling of tightness for a minute or so turns into exploding pain that radiates through the whole side of my head and down the back and side of my neck. I sometimes focus on where the pain is coming from. The nerve/blood vessel in the left side of my neck near the spine sends the KIP 10 pain over the top of the left side of my head to the eye/temple/jaw, or the eye/temple/jaw sends the KIP 10 pain to the back of my neck, no - I can almost make it stay in my jaw or eye or temple. Maybe some of the meds are starting to work? Naw, I end up rolling around holding onto my head for dear life for over an hour, often two hours plus. Finally falling asleep at some point in the middle of the night waking intermittantly with burning residual pain, but at least able to sleep some. Eye tears during much of the attack. Cold stuff, like ice at back of head sometimes helps- usually end up freezing my brain and still suffering terribly. Drugs that knock you out completely or nearly completely help sometimes, but hard to work then or do anything for that matter. Let's see what else; crying - whimpering - groaning - screaming - praying - contemplating the many various ways to end it for good. That about sums it up for me. Treatments: Prednisone taper and Verapamil concurently. Maxalt to abort. Have used ergotamine with some benefit. Imitrex caused attacks to occur mulitiple times dailly rather than once a day. Same with 02. Immediate rebounds. Was usefull as long as I kept the mask on. Stadol NS helps if taken immediately, but side effects are most unpleasant and wouldn't want to use it daily. Like most pain drugs, it probably would quit working anyway. The cluster finds its way around the pain med as with many of the other drugs that work for a short time. Tried lidocaine in the nose. Same thing. Worked for a few times to abort, then the whopper shows up and nothing can touch it. I typically go several years with tightness in my jaw and face showing up seasonally, but usually doesn't turn into a cluster cycle. Then for some reason, combination of stress/allergy/sleep cycle disruptions?, they break through for around a 2 month cycle. The nightmare begins...

Title: Re: Have some compassion
Post by don on Jun 26^th, 2005, 8:44pm

Quote:

It's unfortunate though that many won't stay around since the hard core folks have marked their territory.

Well. Being a runner I guess you would know.

Title: Re: Have some compassion
Post by StressFree on Jun 26^th, 2005, 9:07pm

Quote:

Well. Being a runner I guess you would know.

Again - OUCH!

I guess I can't refute your points that I am not a regular visitor, and I don't make this board my home when out of cluster cycles. I can hardly imagine being a chronic sufferer. I do however keep you all in my prayers when away. I'm sure that will draw some vile remarks again. Never the less, there it is.

Title: Re: Have some compassion
Post by Marc on Jun 26^th, 2005, 9:51pm

Quote:

Looks like you just might be able it take it!

Marc

Title: Re: Have some compassion
Post by burnt-toast on Jun 26^th, 2005, 10:25pm

on 06/26/05 at 21:07:52, StressFree wrote:

I'm relatively new to the site but I understand how everone feels about folks that take support when they need it and don't stick around to help others when they go PF. That said...... Bite Me ;) ;)

I am one to appreciate the significance of prayers but strongly believe that ya gotta' do something directly to back them prayers up. You don't have to live here to give someone a lift every now and then when they're struggling with a bad cycle. It's always good to hear from someone that made it through one and who understands the pain and disruption it causes in one's life.

The choice to stay and go belongs to the individual. I've received a lot of good information and much needed support from some of these hard core folks. I hope you do as well.

Tom

Title: Re: Have some compassion
Post by Sean_C on Jun 26^th, 2005, 10:57pm

on 06/26/05 at 12:21:46, Jonny wrote:

fuck face!!

ROTFLMMFAO [smiley=laugh.gif] That about sums it up ;;D

Title: Re: Have some compassion
Post by alchemy on Jun 26^th, 2005, 11:04pm

while I am yet still relatively new to this site the great support i have recieved here is something i could never run away from if i ever became blessedly painfree. even though i'm not pain free i try to welcome new people and touch base with those who i have struck dialoges with. maybe if you stuck around long enough you would realize that the banter that goes back and forth doesn't increase stress as you so ignorantly stated but relieves stress. personally the banter among the regulars here have given me a lift in a time when i am needing it most. i don't like to come on and bitch about how i feel but i like to read what is going on. this rude dialoge as you call it helps people like me who are chronic and are falling into a pit of despair so deep it has reached a very dangerous point. even still i try to help who i can and could never consider turning my back on anyone here. you should be thankful that the great people here who say bite and fuck off are here and support them instead of biting the hand that feeds you. enjoy your pain free time i'm happy for you, but if this place is just a refuge for you when your in pain then as the king says fuck off. signed a forever grateful member jim

Title: Re: Have some compassion
Post by StressFree on Jun 27^th, 2005, 11:36am

Quote:

maybe if you stuck around long enough you would realize that the banter that goes back and forth doesn't increase stress as you so ignorantly stated but relieves stress.

I get the point about bailing out. Yet, if those who so strongly state their care for others on this board really care for all the sufferers who come here, they would support the children, mothers, grandmothers, and sensitive men who suffer just as much as they do. Yes, these are less common than the regular "guys", but shouldn't everyone be able to read the posts and post themselves without getting crapped on? There is a double standard going on right there. And even though I've bailed for periods of time in the past, I do check in and give support when pain free. By the way, feel free to crap on me all you want to. If it makes you feel better, I'll take it. I'll even temper my own desire to spew vomitous projectile chunks back at you. Even from Jonny. Thanks for being there all you chronics (and pain frees) who hang out full time, Rich Jr.

Title: Re: Have some compassion
Post by Sandy_C on Jun 27^th, 2005, 12:20pm

"There is a double standard going on right there. And even though I've bailed for periods of time in the past, I do check in and give support when pain free."

I disagree about there being a double standard here. The veterans on this board have heard it all, from trying to sell "cures" to really stupid posts by real stupid people, so they have a right to be skeptical.

I had my first CH episode in 1999, and just happened to find this site. I read, I learned, and I posted a few times. At that time, my husband was unemployed and we had no insurance, so no doctor for me. Most of the folks on the board agreed that it sure sounded like CH however I too got slammed back then but only by one or two people who, because I was not "officially" diagnosed by a doctor, said I surely wasn't suffering from CH, and I should take my silly little posts and get lost. I did. I thought I didn't need these jerks and I'd handle this myself, and never return to this site. Well, my CH has gotten me to the point where I can't and don't want to handle it alone any more, so I came back. I'm "offiicially" diagnosed now, so hopefully I qualify. This time around, however, I've found nothing but total support, kindness, and great information. I'm still wary about posting "silly" ideas and stuff, and because I feel that my CH suffering is not as severe as some of the people on this board, I don't pretend that I know more about this disease then they do so I don't often post about things that work for me (mainly because nothing works). I do try to post encouragement and support to others. I'm sticking around. And, by the way, my cycle ended in April and I'm still here. Stick around too, these people have lots to teach you, and you, just like me, have lots to learn.

Sandy

Title: Re: Have some compassion
Post by Leggs on Jun 27^th, 2005, 1:07pm

<<I disagree about there being a double standard here. The veterans on this board have heard it all, from trying to sell "cures" to really stupid posts by real stupid people, so they have a right to be skeptical.

I'm still wary about posting "silly" ideas and stuff, and because I feel that my CH suffering is not as severe as some of the people on this board, I don't pretend that I know more about this disease then they do so I don't often post about things that work for me (mainly because nothing works). I do try to post encouragement and support to others. I'm sticking around. And, by the way, my cycle ended in April and I'm still here. Stick around too, these people have lots to teach you, and you, just like me, have lots to learn.>>

I would rather have the tough guys around to weed out the idiots. I was very skeptical about one guy under "Something that works for me" or similar can't remember even where it was. He was talking about taking Excedrin until he puked black and chelation and somesuch was helping him. Who ever said some of his symptoms did not sound like clusters was right. Actually, it sounded more like something ELSE I have, TNtrigeminal neuralgia, or maybe he just fried his nerves from doing drugs. It was like he was trying to make his symptoms sound like what we wanted to hear or something so we would just run off and line up at the chelation clinic.

I know what you mean about not knowing more about the disease, and not posting what works for you...I haven't had much success with meds, because they usually just make me puke or feel like garbage on top of having killer headaches.

The only problem I have with any of stressfree's comments, is that he's not HERE, so why does he care about lack of compassion????? Not like All the crudeness was my cup of tea, but I just had a problem with him acting like he had any say in the matter. Here I am on the edge of my little July visitor, scared %&itless and I come back tiptoeing begging to be accepted back, not griping "why are you boys such meanies?" I look at them as big brothers looking out for us, and remember those were the folks who kept me sane, and kept me alive when I had a horrid CH a few years ago. Frankly, those guys were the ones, besides my kids, who kept me alive. WHERE WERE YOU???? I don't like being in your ranks (the ranks for the "drop by when I feel like it)so I won't fade away anymore...It just ain't right.

Title: Re: Have some compassion
Post by don on Jun 27^th, 2005, 1:15pm

Quote:

I don't like being in your ranks

Yeah. We can be pretty rank. 8)

Glad your sticking around. You'll always have a seat in this boat.

Title: Re: Have some compassion
Post by LeLimey on Jun 27^th, 2005, 1:20pm

on 06/27/05 at 11:36:54, StressFree wrote:

Um excuse me meathead.. we have loads of support both for and from supporters and other family members right here on this site. Maybe if you stayed long enough to look around you'd see the great big board called SUPPORTERS???

Quote:

..even though I've bailed for periods of time in the past, I do check in and give support when pain free.

And while we are at it... just where exactly DO you check in and give support? As a "veteran" of thirteen posts most of which are on this thread it sure isn't here.
There is a word for what you talk and its BOLLOCKS.

Title: Re: Have some compassion
Post by StressFree on Jun 27^th, 2005, 2:28pm

I was referring to children, mothers, and grandmothers who suffer with cluster attacks just as severe as the rest of us. Think how happy they are to find this site as well. Then they see some vile stuff about sex acts and f-word this and that. It makes one wonder if some here have any basic communication skills. I guess I asked for it though, now I regret it. I've posted throughout the years as Rich Jr., stresfre, and StressFree. I was a regular when this board was started. I corresponded with many fellow sufferers on the MGH board before Clusterheadaches.com was started by DJ. Sorry to have provoked such response here. I feel that I've exacerbated the problem. Perhaps I should relegate myself to "lurker" status...

Title: Re: Have some compassion
Post by Marc on Jun 27^th, 2005, 2:38pm

Don't back off now Rich, I thought you could take it!

Title: Re: Have some compassion
Post by LeLimey on Jun 27^th, 2005, 2:51pm

Yeah shitbag? Mothers and children huh?
Keep going cos I can.
I AM A MOTHER and GUESS WHAT? I have a 3 yr old with CH too.
Don't even fuckin go there.

Title: Re: Have some compassion
Post by don on Jun 27^th, 2005, 2:52pm

Quote:

I feel that I've exacerbated the problem. Perhaps I should relegate myself to "lurker" status

First thing you've posted that has made any sense.

Maybe if you keep your mouth shut and just read you'll finally comprehend what this place is all about.

Title: Re: Have some compassion
Post by StressFree on Jun 27^th, 2005, 3:00pm

Thanks for the encouragement Marc. And to Limey, terribly sorry for your little one. And I will be listening more, blabbing less. Thanks for the good advise...

Title: Re: Have some compassion
Post by Sean_C on Jun 27^th, 2005, 8:59pm

on 06/27/05 at 14:51:15, LeLimey wrote:

Don't even fuckin go there.

My nipples just got hard ;;D

Title: Re: Have some compassion
Post by TonyG1 on Jun 27^th, 2005, 9:06pm

on 06/26/05 at 10:47:28, burnt-toast wrote:

Don,

You're my new hero.

Tom

Ditto Don !! ;;D