Author |
Topic: Have some compassion (Read 1060 times) |
|
StressFree
New Board Veteran
James4:8 I'm a moral failure, but there is hope...
Gender: 
Posts: 158
|
 |
Have some compassion
« on: Jun 26th, 2005, 3:13am » |
 Quote  Modify
|
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? 
|
|
 IP Logged |
|
|
|
don
Guest
|
Bite me.
|
|
IP Logged |
|
|
|
burnt-toast
New Board Hall of Famer
Gender:
Posts: 1686
|
|
Re: Have some compassion
« Reply #2 on: Jun 26th, 2005, 10:28am » |
Quote Modify
|
on Jun 26th, 2005, 3:13am, 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
|
|
IP Logged |
Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
|
|
|
don
Guest
|
|
Re: Have some compassion
« Reply #3 on: Jun 26th, 2005, 10:45am » |
Quote Modify
 Remove
|
And in addition to all that.
|
|
IP Logged |
|
|
|
burnt-toast
New Board Hall of Famer
Gender:
Posts: 1686
|
|
Re: Have some compassion
« Reply #4 on: Jun 26th, 2005, 10:47am » |
Quote Modify
|
Don,
You're my new hero.
Tom
|
|
IP Logged |
Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
|
|
|
don
Guest
|
|
Re: Have some compassion
« Reply #5 on: Jun 26th, 2005, 11:45am » |
Quote Modify
Remove
|
Quote:
Stated with love and compassion.
|
|
IP Logged |
|
|
|
Jonny
CH.com Alumnus
New Board Hall of Famer
Give me a shovel Ill dig my own grave!
Gender:
Posts: 26213
|
|
Re: Have some compassion
« Reply #6 on: Jun 26th, 2005, 12:21pm » |
Quote Modify
|
on Jun 26th, 2005, 3:13am, 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!!
|
|
IP Logged |
It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
|
|
|
don
Guest
|
|
Re: Have some compassion
« Reply #7 on: Jun 26th, 2005, 12:24pm » |
Quote Modify
Remove
|
Quote:
Again stated with love and compassion.
|
|
IP Logged |
|
|
|
Jonny
CH.com Alumnus
New Board Hall of Famer
Give me a shovel Ill dig my own grave!
Gender:
Posts: 26213
|
|
Re: Have some compassion
« Reply #8 on: Jun 26th, 2005, 12:35pm » |
Quote Modify
|
on Jun 26th, 2005, 12:24pm, don wrote:
Again stated with love and compassion. |
|
Yeah, along with my boot in his ass as he walks out the door PF!.....FUCKER!!!!
|
|
IP Logged |
It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
|
|
|
burnt-toast
New Board Hall of Famer
Gender:
Posts: 1686
|
|
Re: Have some compassion
« Reply #9 on: Jun 26th, 2005, 1:13pm » |
Quote Modify
|
OK, OK,
 I wasn't kidding about the mistreatment part.
I think this love & compassion thing can work. 
|
|
IP Logged |
Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
|
|
|
cazman
New Board Veteran
if ya dont like it take a walk
Gender:
Posts: 223
|
|
Re: Have some compassion
« Reply #10 on: Jun 26th, 2005, 3:11pm » |
Quote Modify
|
for me do me a fovor blow me first then bite me now i feel better
|
|
IP Logged |
|
|
|
LeLimey
CH.com Alumnus
New Board Hall of Famer
OUCH-US - Less "ME" and more "WE"
 
Gender: 
Posts: 11720
|
|
Re: Have some compassion
« Reply #11 on: Jun 26th, 2005, 4:25pm » |
Quote Modify
|
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!
|
| « Last Edit: Jun 26th, 2005, 4:27pm by LeLimey » |
IP Logged |
The arsehole I'm divorcing needs to get a life and stop stalking mine
|
|
|
bnfreeman
New Board Veteran
Gender:
Posts: 165
|
|
Re: Have some compassion
« Reply #12 on: Jun 26th, 2005, 6:12pm » |
Quote Modify
|
This made my day!! HAHAHAHAHAHAHAHA! lol!
|
|
IP Logged |
|
|
|
Leggs
New Board Veteran
Live to learn, die & forget it all - Milo Puckett
Gender:
Posts: 196
|
|
Re: Have some compassion
« Reply #13 on: Jun 26th, 2005, 7:46pm » |
Quote Modify
|
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?"
|
|
IP Logged |
Some people have one of those days,
I Have One Of Those Lives, And I Love It
ihootlaili
|
|
|
Leggs
New Board Veteran
Live to learn, die & forget it all - Milo Puckett
Gender:
Posts: 196
|
|
Re: Have some compassion
« Reply #14 on: Jun 26th, 2005, 7:48pm » |
Quote Modify
|
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?
|
|
IP Logged |
Some people have one of those days,
I Have One Of Those Lives, And I Love It
ihootlaili
|
|
|
don
Guest
|
|
Re: Have some compassion
« Reply #15 on: Jun 26th, 2005, 8:18pm » |
Quote Modify
Remove
|
You mean a*sshole? 
|
|
IP Logged |
|
|
|
StressFree
New Board Veteran
James4:8 I'm a moral failure, but there is hope...
Gender:
Posts: 158
|
|
Re: Have some compassion
« Reply #16 on: Jun 26th, 2005, 8:40pm » |
Quote Modify
|
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...
|
|
IP Logged |
|
|
|
don
Guest
|
|
Re: Have some compassion
« Reply #17 on: Jun 26th, 2005, 8:44pm » |
Quote Modify
Remove
|
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.
|
|
IP Logged |
|
|
|
StressFree
New Board Veteran
James4:8 I'm a moral failure, but there is hope...
Gender:
Posts: 158
|
|
Re: Have some compassion
« Reply #18 on: Jun 26th, 2005, 9:07pm » |
Quote Modify
|
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.
|
|
IP Logged |
|
|
|
Marc
New Board Newbie
Gender:
Posts: 39
|
|
Re: Have some compassion
« Reply #19 on: Jun 26th, 2005, 9:51pm » |
Quote Modify
|
Quote: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. |
|
Looks like you just might be able it take it!
Marc
|
|
IP Logged |
|
|
|
burnt-toast
New Board Hall of Famer
Gender:
Posts: 1686
|
|
Re: Have some compassion
« Reply #20 on: Jun 26th, 2005, 10:25pm » |
Quote Modify
|
on Jun 26th, 2005, 9:07pm, StressFree wrote:
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. |
|
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
|
|
IP Logged |
Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
|
|
|
Sean_C
Guest
|
|
Re: Have some compassion
« Reply #21 on: Jun 26th, 2005, 10:57pm » |
Quote Modify
Remove
|
on Jun 26th, 2005, 12:21pm, Jonny wrote:
ROTFLMMFAO That about sums it up 
|
|
IP Logged |
|
|
|
alchemy
CH.com Alumnus
New Board Hall of Famer
get out of my head
Gender:
Posts: 1639
|
|
Re: Have some compassion
« Reply #22 on: Jun 26th, 2005, 11:04pm » |
Quote Modify
|
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
|
|
IP Logged |
|
|
|
StressFree
New Board Veteran
James4:8 I'm a moral failure, but there is hope...
Gender:
Posts: 158
|
|
Re: Have some compassion
« Reply #23 on: Jun 27th, 2005, 11:36am » |
Quote Modify
|
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.
|
|
IP Logged |
|
|
|
Sandy_C
CH.com Alumnus
New Board Hall of Famer
Burn that bra!
Gender:
Posts: 2585
|
|
Re: Have some compassion
« Reply #24 on: Jun 27th, 2005, 12:20pm » |
Quote Modify
|
"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
|
|
IP Logged |
Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss