Author |
Topic: staring ........in the Face of clusters (Read 4276 times) |
|
kim
New Board Newbie
I love YaBB 1G - SP1!
Posts: 7
|
 |
Re: staring ........in the Face of clusters
« Reply #25 on: Jan 3rd, 2004, 9:28pm » |
 Quote  Modify
|
But you had to say somthing, no????
Why??
I said my piece. I feel that way still. I won't ever hold a dying cluster head in my arms.
But that could jes be me
|
|
 IP Logged |
|
|
|
Jackie
CH.com Alumnus
New Board Hall of Famer
Go For It!!!
Gender: 
Posts: 2963
|
|
Re: staring ........in the Face of clusters
« Reply #26 on: Jan 3rd, 2004, 9:30pm » |
Quote Modify
|
As most of you know I don't have cluster headaches.....but I'm married to a chronic. I've watched him go through literally thousands of attacks.....and it's a pitiful thing to see a human endure.
Kim....you are right. Cluster headaches won't kill you...or so they say. However, the fall out from them might.....the depression, the exhaustion, etc. Pain will eventually wear the body and soul out. It will eventually take away ones will to live. I would hate to think where Blake would be without medication.....I'll tell you where he would be...he'd probably be dead.
In my opinion....NEEDLESS SUFFERING IS FOOLISH!!!!!!!!! But, it that's one's bag then go for it.
Jacks 
|
|
IP Logged |
|
|
|
BlueMeanie
Guest
|
|
Re: staring ........in the Face of clusters
« Reply #27 on: Jan 3rd, 2004, 9:37pm » |
Quote Modify
 Remove
|
I cannot afford to hide for 2 hrs. waiting for the BEAST to leave my head. That's great that you can, but I'm sorry, CH attacks put me incapacitated. (no exaggeration). I would have lost my job years ago. And I sure would have missed out on alot of good times I've enjoyed over the last 25 years thanks to meds.
There may not be a cure, but I thank GOD that Imitrex is now available along with the other meds that allow me to enjoy life without fear of being incapacited at any time without notice.
|
|
IP Logged |
|
|
|
kim
New Board Newbie
I love YaBB 1G - SP1!
Posts: 7
|
|
Re: staring ........in the Face of clusters
« Reply #28 on: Jan 3rd, 2004, 9:37pm » |
Quote Modify
|
Jackie, Needless suffering IS foolish.
I've suffered for 30 years. It was outa my hands. Clusters......they do what they do.
i'm telling YOU that what comes with this ilness is what comes. Medicine don't work all the time.............
Period.
It does NOT WORK. IT DOES NOT WORK.
Now you all hate kim cuz she said her piece. FUCK IT and Brian i want the pants(smile)***
don't matter. not like i am the white wizard. I only wear freaky pants and tawk my mind> and i don't particuarly care if you care about my words or my pants. In ten years they will look exacly the same****
|
|
IP Logged |
|
|
|
Opus
New Board Hall of Famer
(Insert witty comment here)
  
Gender: 
Posts: 2509
|
|
Re: staring ........in the Face of clusters
« Reply #29 on: Jan 3rd, 2004, 9:42pm » |
Quote Modify
|
Kim,
As my cycle gets closer to a year long, I think that maybe my abortive and preventative, though not officially drugs, maybe be causing this cycle to go on far too long. But what of the alternative, if the 29 out of 30 hits that I have aborted were alowed to go the full leanth of 1 to 2 hours what would I have to do to survive? Seperation and fostercare are the only solutions that I see, they are always in the back of my mind when I am hit with an unstopable and someone needs my help. This is my personal choice, but as treatments are diffrent for everyone, so is non treatment.
Opus/Paul
|
|
IP Logged |
Zed-Zed-nine plural-Zed alpha,
There is no place like home.
|
|
|
brain_cramps
New Board Hall of Famer
Gender:
Posts: 2103
|
|
Re: staring ........in the Face of clusters
« Reply #30 on: Jan 3rd, 2004, 9:49pm » |
Quote Modify
|
on Jan 3rd, 2004, 5:10pm, kim wrote:| ...After 25 years I have not been successful in finding that majic that fix... |
|
on Jan 3rd, 2004, 9:37pm, kim wrote:| I've suffered for 30 years. It was outa my hands. Clusters......they do what they do. |
|
WOW!! That was a quick 5 years LOL 
|
|
IP Logged |
|
|
|
OneEyeBlind
New Board Hall of Famer
Yea, I can do this
Posts: 574
|
|
Re: staring ........in the Face of clusters
« Reply #31 on: Jan 3rd, 2004, 9:59pm » |
Quote Modify
|
Perhaps the first 5 years was spent trying to figure out what was wrong. Lets not start disecting each other's posts. It gets us nowhere.
Kimmy's point is that she has found no meds that work for her successfully all the time. And perhaps emotionally she finds it easier to just give up, rather than to keep seeking the ultimate coctail.
While I don't agree with this philosophy, I can respect how she feels. Sometimes in life we give up because the pain of failure just hurts worse than the headache.
And Kim, please feel free to flame me if I am wrong.
|
|
IP Logged |
One cannot step twice in the same river, for fresh waters are forever flowing around us.
|
|
|
brain_cramps
New Board Hall of Famer
Gender:
Posts: 2103
|
|
Re: staring ........in the Face of clusters
« Reply #32 on: Jan 3rd, 2004, 10:05pm » |
Quote Modify
|
That wasn't meant to disect Kim's post. I just kinda found it funny. 
guess not...
grant 
|
|
IP Logged |
|
|
|
kissmyglass
CH.com Alumnus
New Board Hall of Famer
Don't Mix Triptans
Gender:
Posts: 1398
|
|
Re: staring ........in the Face of clusters
« Reply #33 on: Jan 3rd, 2004, 10:10pm » |
Quote Modify
|
Kim,
I think you done lost your mind....
Guess you had to be there to understand the pic.....
Kev
|
|
IP Logged |
"It does so fucking look like her" - Picasso
[img][/img]
|
|
|
Linda_Howell
CH.com Alumnus
New Board Hall of Famer
Hearing is one thing. Listening is another.
Gender:
Posts: 6721
|
|
Re: staring ........in the Face of clusters
« Reply #34 on: Jan 3rd, 2004, 10:12pm » |
Quote Modify
|
THANK YOU Kev.
LindaH
|
|
IP Logged |
Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
|
|
|
Mastifflvr28
CH.com Alumnus
New Board Hall of Famer
Freddie's eyes
Gender:
Posts: 3458
|
|
Re: staring ........in the Face of clusters
« Reply #35 on: Jan 3rd, 2004, 10:13pm » |
Quote Modify
|
Kim made a few points. If she wants to give up on finding a magic wand for HER that is fine, but to say that we should WITHHOLD meds info and advice for newbies is another thing.
Mast
|
|
IP Logged |
Mastifflvr28 (aka Michelle A.)
Be part of the solution
http://www.ouch-us.org
OXYGEN!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
|
|
|
ClusterChuck
CH.com Alumnus
New Board Hall of Famer
The BEAST rises again, and again, and again, and .
Gender:
Posts: 3181
|
|
Re: staring ........in the Face of clusters
« Reply #36 on: Jan 3rd, 2004, 10:22pm » |
Quote Modify
|
I seem to think that many of you are missing Kim's point. She is saying that meds do not work FOR HER. In her years of dealing with it, nothing she has tried, works. I don't think she is condemning ANYONE for using what works for them. Many of us go thru too many hits without relief. We deal with them as we have learned to. Kim and those that do not use drugs, are not super people, they are survivors, just like the rest of us.
The clusterheadache beast is VERY ingenious! He attacks us each in our own way. Just as we get attacked in our own way, we deal with it in our own way. Kim is no better than the rest of us, nor is she any worse (although she IS kind of wierd! heehee). She and I and others, that have had this for many years, have learned how to deal with the beast. And deal with it we shall! And many of us want to deal with it ALONE. No one near us. No one witnessing us. No one "helping" us. As I say, "Leave me the FUCK ALONE!!!"
Cluster headaches are NOT imitrex and oxygen! Cluster headaches are the extreme pain. Cluster headaches are the isolation we feel. Cluster headaches are the ignorance we are forced to deal with. Cluster headaches are how we learn to deal with them and life.
The above is the way I understand Kim to feel. If I am wrong, she WILL let me know! HaHa!!!
Chuck
EDIT: I just read the posts since I started typing this. Some of you have PISSED ME OFF! Kim is NOT nor has she EVER been a quitter! I resent those that accuse her of it! She has NOT quit! She has ACCEPTED her lot in life! She fights just as hard as any of us!
|
| « Last Edit: Jan 3rd, 2004, 10:30pm by ClusterChuck » |
IP Logged |
"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
|
|
|
Ted
New Board Newbie
I love YaBB 1G - SP1!
Gender:
Posts: 1
|
|
Re: staring ........in the Face of clusters
« Reply #37 on: Jan 3rd, 2004, 10:40pm » |
Quote Modify
|
A friend told me about this thread and how it affected her. So I came back here to read it and see what it was all about. Here's what I see. Kim started out saying Imitrex and O2 don't work for her. "there is no magic cure." But then she went on to say that because of her experiences she would sum it all up as that's how it is for most and say it's like that for a majority. And that's the general premise and perspective behind what she said. It doesn't follow the info in medical literature. Agreed. I see no reason not to show Imitrex needles or them being used, if that's what happened that pissed her off. But her perspective is that most people are like her. And when my head is in a bad cycle she's right on for how I am. But then she's asked, pointedly, how does she get through a Kip 10? How did any of us before we found a doctor who found something that would work? Right now we're all spoiled because we found something that helps sometimes or always. But how did you ever survive a 10 before? Because you had to. Because your other option sucked too and knew this, at least, would end.
Then in another thread, and the one that seemed to piss people off the most she says she doesn't want anyone else there when she gets hit. Whether offering help or not. This seemed to upset people. Not because Tracey, thankfully, had Cat to help her. But because they deem that as impossible and ridiculous. For different reasons I do not want anyone trying to help me. It's not a matter of being tough, as some of you claim that attitude to be but it's a matter of being weak. No one is in your life for good and if you find someone who not only will, but wants to help you, when they leave you will find it near impossible to deal with a 6, let alone a 10. So, for fear of that weakness I refuse help when it's offered. It's not strength and anyone who is so idiotic to be insecure enough of us who refuse help to percieve it as strength and resent us for demanding to go through it alone, get over it. Most of us are fucking weaker than you and wish so much we can take it but know we'll be too weak to face the next ones alone if ew get spoiled. So Kim saying she wants to take it alone? Fuckeneh! Me too. All the time.
So, basically, Kim doesn't like how many deal with their pain and those many don't like how Kim deals with hers. Big fucking deal. Deal with your own pain and don't give a fuck how anyone else deals with theirs if it doesn't hurt you. Don't hold dying clusterheads if it causes you pain and you don't care and don't let them go if you get a feeling of helping and inner love by doing such.
Jonny. Four times a night is tit. I thought you were king.
|
|
IP Logged |
|
|
|
OneEyeBlind
New Board Hall of Famer
Yea, I can do this
Posts: 574
|
|
Re: staring ........in the Face of clusters
« Reply #38 on: Jan 3rd, 2004, 10:51pm » |
Quote Modify
|
OMG ......... I suddenly LOVE this thread.
............... Out of the woodwork
............. never mind. I'm smiling.
......... Omg, I thought you hated her.
......... and the things you see here always surprise me
......... lmao. 2004 is gonna be a good year !
............... shiiiiiiiiiiiiiiiiiiiiiiiiiiiit
|
|
IP Logged |
One cannot step twice in the same river, for fresh waters are forever flowing around us.
|
|
|
Tiannia
New Board Hall of Famer
Life does not apologies......
Gender:
Posts: 3241
|
|
Re: staring ........in the Face of clusters
« Reply #39 on: Jan 3rd, 2004, 10:53pm » |
Quote Modify
|
Edit: Maybe I missed the point but once i started this all came out. Sorry before hand if I seriously piss people off.
I have not been dealing with these damnable things for 25 year or even 5 years. I have only had 7 months of torture. I know that the imitrex, that while it does not always help cause all I have is tablets and is not always available as on option to me due to the minimal amount that I can get, does help and has helped me to still be able to attempt to lead a normal life. Continue to work throughout my day so that I can keep my house as I live pay check to pay check, take care of my kids cause the attack does not care if it is time for my sons nebulizer treatment or when I get to get the kids from daycare or dinner time or when my 18 month old wakes up in the middle of the night. It has allowed me to feel like I have a little control back.
No, Kim, these HA's will not kill me and I do struggle through them and I do fight and they subside and I get up and move on. But 6 months ago I thought I was going insane. I thought that I was going to die. And there are times even now when they hit hard and fast that I feel that way again. Hell I have even asked for it cause I see the pain in the eyes of my husband and my kids when I am lying on the floor unable to move. And even if CH is not terminal, I do honestly believe that is could easily lead to many deaths. There is a mountain of research to prove that long term uncontrolled pain is a leading cause in deaths. Be it from suicide, malnutrition (people simply starving themselves to death because of the lack of strength and melancholy), and depression, where people simply give up.
Everyone has to have a reason to get up everyday, and prolonged pain effects every aspect of your life. I would have lost my job that I started 3 weeks before I first CH hit. I had the “When you are here and focused, you do great. But how can we make sure that you are here?” talk from my office manager. Thankfully the partners appreciate me more and I was able to talk to them and work things out. I have hit depression, there I cant eat and afraid to sleep cause I know that I am going to get hit. Where all I want to do it cry and curl into a little ball. I have been angry, hell I am still angry and want to know why. Why the fuck do I and the rest of us have to deal with this fucking shit where there are so many other people out there who have nothing that they deal with. They seem to have such a simple uncomplicated unPAINful life and why do people who do everything in their power to help everyone else around them get hunted by this god forsaken beast? You are right there is not an answer. There never will be one.
Each of us has to get through this the best way that we can. If that is with Imitrex and O2 great, if that is with Shrooms great, if that is without anything and alone head banging more power to you. I personally am not that strong. Even when I have tried my hardest to keep my kids and especially my husband from having to see me and deal with me when I am being hit, I have learned that I cause them more pain by doing that. No I am not one that wants to be alone. I want to see my kids I want to see mt husband, I dont want anyone to touch me in general, but seeing the ones htat i care about the most helps me to get thruogh it better. Cause I know that they are the reason that I am fighting. But that is my choice and what helps me.
There is not an all encompassing cure. There is not a "One size Fits all" way to handle these. And from what I have seen each and every person gets hit different. I don’t get K10 every day. But when those days come I am extremely grateful for what meds I do have that allow me to have some semblance of ability to control and abort them.
I applaud the strength that so many show here. Not just the sufferers but the supporters as well. I know the stress that I have put on my husband because of these and I feel like I have failed him. That there was something that I have done or did not do that brought these fucking things into my life. So many here have helped me and without their guidance I would not be able to ask the questions and get the treatments that I need to have to ensure that I am getting the best help possible. If they had decided to not give me info or to not share their experiences I would probably still be sucking down antibiotics and antihistamines cause all I was told was well it sure sounds like clusters but your a women so it has to be a sinus infection and sinus headache. And I would have bought it cause so much info says just that. But people here showed me that many women get CH's and where to find the back up to show them that they where wrong.
Granted CH is not common (even though I believe that we are a larger group as there are so many misdiagnosed), and we are not a large part of the populous, but that does not mean that we should not raise our voices and be hear. If Wailing in the night gets attention then maybe we should do it more often.
**sorry for the typos, typing with a sleeping 18month old on my lap and on an arm.
Tiannia
|
| « Last Edit: Jan 3rd, 2004, 11:02pm by Tiannia » |
IP Logged |
The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
|
|
|
Jackie
CH.com Alumnus
New Board Hall of Famer
Go For It!!!
Gender:
Posts: 2963
|
|
Re: staring ........in the Face of clusters
« Reply #40 on: Jan 3rd, 2004, 10:58pm » |
Quote Modify
|
TED!!!!!
Good to see you.... 
And I haven't even read your post yet....
What did you say? Something profound I'll bet....
Jacks
|
|
IP Logged |
|
|
|
BlueMeanie
Guest
|
|
Re: staring ........in the Face of clusters
« Reply #41 on: Jan 3rd, 2004, 10:59pm » |
Quote Modify
Remove
|
My apologies to Kim & the others.
Believe me, I know how you got through a KIP 10.
I read your post as you didn't want to use meds and just take what's dealt to you. I didn't realize NOTHING works for you and I'm sorry. Without public awarness, it will just take that much longer to develop more meds that will someday work for you. In the meantime, I feel it is important to notify other Clusterheads of something they may not be aware of. It just may work for them and save their dignity and stop their pain.
I respect your privacy. I never let anyone see me and/or take pictures of me in that condition. I wasn't there when the picture was taken. That moment was for those who where there. I'm sure it helped in their own way.
PFDAN
|
|
IP Logged |
|
|
|
Charlie
CH.com Alumnus
New Board Hall of Famer
Happy to be here
  
Gender:
Posts: 14968
|
|
Re: staring ........in the Face of clusters
« Reply #42 on: Jan 3rd, 2004, 11:14pm » |
Quote Modify
|
Hi Ted. God I miss this stuff. 
I'm needed a fix Ted. All is right with the world.
This thing got slowly pretty stupid anyway....... 
Charlie
Flog me
|
|
IP Logged |
There is nothing more satisfying than being shot at without result---Winston Churchill
|
|
|
Mastifflvr28
CH.com Alumnus
New Board Hall of Famer
Freddie's eyes
Gender:
Posts: 3458
|
|
Re: staring ........in the Face of clusters
« Reply #43 on: Jan 3rd, 2004, 11:33pm » |
Quote Modify
|
Blue Meanie,
Just to be clear here, there was NO picture taken of a sufferer getting hit, OR injected.
When we were at the convention in NY, some of the people that were at home were saying we were having too much fun, and that the OUCH convention was just about partying.
Well, I just took a couple of pictures of our endtables in our room...that had needles and imitrex vials strung about the tables. And posted "It ain't all about the partying".
Just wanted to clear that up, so that no one thought a sufferer had gotten a picture taken of them in a hit.
That would NOT be right!! Not for the fun of it anyways...maybe for educational purposes.
Also, I appreciate the perspectives from the newbies posted here...newbies to CH and to this board.
Thanks,
Mast
|
|
IP Logged |
Mastifflvr28 (aka Michelle A.)
Be part of the solution
http://www.ouch-us.org
OXYGEN!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
|
|
|
Roxy
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 2282
|
|
Re: staring ........in the Face of clusters
« Reply #44 on: Jan 3rd, 2004, 11:44pm » |
Quote Modify
|
Before I start....nice to see you on the board Teddy.... 
OK...now my rant:
Should Linda not have posted? Since she is a chronic....I would think she has every right to post to a/this thread, or wherever the hell she chooses. Did you want no other opinions? Or is this just a manifesto that no one is to answer? All I can say after reading this...and, since my name was brought into this fray....I felt like I should throw in my  . I am gathering that you are episodic....if so....that's cool. Don't presume to state opinions of what others should do. Even us sorry chronics are able to take a hit.....and keep on rolling, enjoying life to the fullest. We can do that because of those little things called meds. But.....I don't think you quite get that part of it. If you do actually understand the life of a chronic...and still feel the way you do....then all I can say is......Fuck Off!!
on Jan 3rd, 2004, 9:28pm, kim wrote:| I won't ever hold a dying cluster head in my arms. |
|
I hope you never have to. I hope you never have to witness someone else in that kind of pain. It's not the cluster that will kill someone....it's the effect on their life. That is something of which the meds will help. I'm sorry you haven't found anything that works for you. Or if you chose to go without......my hat is off to you....you got bigger balls than me. I've done the no meds route, and I've done the meds....guess you could say I go both ways.
Besides....if you want to do this "all alone".....why are you on the board? This board is nothing except a "med" of a psychological kind.
Tracey (the really grumpy chronic tonight....flame away)
|
|
IP Logged |
Only two things are infinite, the universe and human stupidity, and I'm not sure about the former. (Einstein)
I used to have a handle on life....but it broke.
|
|
|
Rick_K
New Board Old Timer
Gender:
Posts: 291
|
|
Re: staring ........in the Face of clusters
« Reply #45 on: Jan 4th, 2004, 12:12am » |
Quote Modify
|
OK shit I can help but jump in on this….
If dealing with the beast without any help is what floats your boat than more power to ya. Been there…done that....aint gonna do it again.
I understand having no meds or help. Myself, I have dealt with the beast for 35 years and spent the first 20 dealing with it with shear willpower only because the medical community didn’t know what the fuck was going on and neither did I, there was no choice but to suffer. And yes it can be done that way but why?...................I went through all the bullshit diagnosis of eye strain, sinuses, “your fuckin nuts”, etc. but then I found out what it was and after going through some very strange treatments I found the right doc, but I must ask, why would or should someone suffer ???
I found O2, it is a beautiful thing, also verapamil, caffergot, presodone, imitrex……………
There is a reason these are call “Suicide Headaches” and denying meds or information to people helps no one.
Having dealt with this shit for this long and 20 years without any help I leave you with these thoughts…….
Do not get in between me and my pharmacists………..I will give up my oxygen tank when they pry it from my cold dead hands
Rick
|
|
IP Logged |
episodic since 1969........damn
|
|
|
BlueMeanie
Guest
|
|
Re: staring ........in the Face of clusters
« Reply #46 on: Jan 4th, 2004, 12:18am » |
Quote Modify
Remove
|
Quote:| "It ain't all about the partying". |
|
At least not ALL of it. But Davenport is gonna be fun. LOL
That's great Mast. Wasn't thinkin' nuttin' bad about you guys. I'm sure you had a good time.
Just like Davenport will be.
|
|
IP Logged |
|
|
|
stevegeebe
CH.com Alumnus
New Board Hall of Famer
I love YaBB 1G - SP1!
Gender:
Posts: 1342
|
|
Re: staring ........in the Face of clusters
« Reply #47 on: Jan 4th, 2004, 7:11am » |
Quote Modify
|
If I want to cross the plate, I figure I'm going to need a bat. And if I want to increase the odds of scoring, I'm going to have to swing.
Getting to base on "balls" or by getting beaned by fast balls is something I've tried for many years. But I'm tired now and the bruises are deep and not easily forgotten.
Bat boy, bring me the lumber...I'm going try to hit it out of the park...or at the very least, lay down a bunt.
Steve G
|
|
IP Logged |
|
|
|
Paigelle
Guest
|
|
Re: staring ........in the Face of clusters
« Reply #48 on: Jan 4th, 2004, 9:13am » |
Quote Modify
Remove
|
on Jan 3rd, 2004, 6:15pm, kim wrote:Letting the attack run it's course with NO MEDS, that's how i got through the worst of it.
Every time I interrupted cycle with "MEDS" i had the most memorable, intense cycles................Don't mess with mudda nature  |
|
I totally agree with this post. If I let the cycle runs its course, I am usually better off. If I take Imitrex, I feel awful plus my heart rate goes off the wall. I will also have another attack within a few hours of the Imitrex and it would be one that Imitrex wouldn't help. I haven't tried O2.
With the cycle I just finished, I was given Prozac and Inderal. I quit taking the Prozac because I felt nothing was happening with it. The only thing I wanted out of this cycle was not to be hit in the day, when I was alone with my 3-yr old. Of course, I didn't want hit at all, but I knew it was going to happen. If hit in the night I have the option of being alone and not having to care for someone else. If hit during the day, I still had to care for my son, which is hard when you can't even speak.
|
|
IP Logged |
|
|
|
BobG
New Board Hall of Famer
Gender:
Posts: 5747
|
|
Re: staring ........in the Face of clusters
« Reply #49 on: Jan 4th, 2004, 10:16am » |
Quote Modify
|
Kim, you're ok by me.
Ted, ditto what Charlie said.
|
|
IP Logged |
Stay stressed. Never relax. Never sleep. Ever.
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss