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Topic: staring ........in the Face of clusters (Read 4275 times) |
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jadedgazer
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Re: staring ........in the Face of clusters
« Reply #50 on: Jan 4th, 2004, 10:30am » |
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I have been reading this thread, considering what has been said here and I still don't understand the logic. Maybe I am just a little slow. I am certain that my opinion doesn't count for much, but at this point I really don't care who likes it and who doesn't.
I am chronic. I have these damn things every single day, 6-10 times a day...it has been this way for over two years now, 836 days without a break from these things. Not very long compared to some. I am tired. At this point a K6 is excrutiating, tormenting and exhausting. I haven't found my 'magical cocktail' yet. Key word being yet. But I will be damned if I am giving up! Imitrex doesn't work for me, and O2 doesn't all the time either. But there is something out there that will, I know that there is. There is a preventative mix that will help me. I have to keep hoping, for myself and others who suffer with me. Yes, there are times when I have to bite the bullet and 'deal' with a K9 or K10 and the O2 just won't help. I have to endure the look of frustration on my husbands face as he holds my hand. But he is the only one who I allow to see me that weak. I don't care to be seen in that state by anyone, but I would not hesitate to hold someone else in the throes of that kind of anguish. For me to turn my back on another sufferer that way would be cold and heartless. No this may not kill us, but it beats us down sometimes to a point where we wonder if living is worth it. And it is those of you here on this board and those supporters around us that are willing to rock us and hold us and give us shots when we aren't able to do so ourselves that remind us that life is worth living and that we will beat this thing.
One day I may find a concoction that breaks this endless cycle that I am in, and by sharing that concoction here I may help someone else. This beast is different for everyone, but we can only learn from one another and hold each other up along the journey to a brighter day.
Flame me if you choose, my skin is growing thicker by the day.
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Jackie S.
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captdshea
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Re: staring ........in the Face of clusters
« Reply #51 on: Jan 4th, 2004, 11:00am » |
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DITTIO -Clusterchuck!
I've been on this board for 2yrs. I think this is the best
thread I've read in that 2yrs.
For me this thread is about living life with CH....
I thinK DJ meant for this board to be just that.
The medical advice here is great and gives us tools to
deal with the doc"s
But in the end are we not getting treated by the
Medical Pros. for the most part ???
David
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Paigelle
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Re: staring ........in the Face of clusters
« Reply #52 on: Jan 4th, 2004, 12:05pm » |
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We all have opinions about what works and doesn't work. We all know that some meds works for one cycle, but won't work for the next. I will try anything, but have found that I have tried some meds that have either increased the length of my cycle or raised the KIP. I understand what Kim is saying about letting Mother Nature run its course. Of course being episodic it is easier to feel that way. There is no way in hell that someone chronic could do that, because nature is never finished with them.
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cathy
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Re: staring ........in the Face of clusters
« Reply #53 on: Jan 4th, 2004, 12:27pm » |
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Hey Kim you quitter it's for you.... 
If People Disapprove of You....
Make being disapproved of your hobby
Make being disapproved of your aim
Devise new ways of scoring points
In the Being Disapproved of Game
Let them disapprove in their dozens
Let them disapprove in their hordes
You'll find that being disapproved of
Builds character, brings rewards
Just like any form of striving
Don't be arrogant, don't coast
On your high disapproval rating
Try to be disapproved of most
At this point if it's useful
Draw a pie-chart or a graph
Show it to someone who disapproves
When they disapprove just laugh
Count the emotions you provoke
Anger, suspicion, shock
One point for each of these and two
For every boat you rock
Feel yourself warming to your task
You do it bloody well
At last you've found an area
In which you can excel
Savour the thrill of risk without
The fear of getting caught
Whether they sulk or scream or pout
Enjoy your new found sport
Meanwhile all those who disapprove
While you are having fun
Won't even know your game exists
So tell yourself you've won
Sophie Hannah
Cathy 
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Unsolved
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Re: staring ........in the Face of clusters
« Reply #54 on: Jan 4th, 2004, 1:49pm » |
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Kim ~ You must NOT be suffering from KIP 9's and 10's like some of us. Going through a couple with no meds is one thing, but to go through them ALL with no meds is just plain CRAZY !!
(I do agree that some meds can make things worse though)
~ Clusters CAN Kill ~ (indirectly)
I've been dealing with this for 15 years, the last 3 years chronically...and without meds...i'd be dead for sure !! A person can only take so much physical torture before they crack !!
Unsolved
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OneEyeBlind
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Re: staring ........in the Face of clusters
« Reply #55 on: Jan 4th, 2004, 2:27pm » |
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Personally, I think Kim might like playing the "disaproved of game" because like most on this board ...... she has an opinion. Great one Cathy ........ but Kim ......... remember ....... giving up is not an option, only a conclusion. Love ya !
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jonny
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Re: staring ........in the Face of clusters
« Reply #56 on: Jan 4th, 2004, 2:57pm » |
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on Jan 4th, 2004, 1:49pm, Unsolved wrote:~ Clusters CAN Kill ~ (indirectly)
I've been dealing with this for 15 years, the last 3 years chronically...and without meds...i'd be dead for sure !! A person can only take so much physical torture before they crack !! |
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I guess the decade or better I went with no meds while chronic was just in my imagination, I would rather be chronic than episodic anyday....I never live in fear of that time of the year when the beast is going to rip me a new one.....I know what it is, where it is and when it will strike (For the most part) and I plan for it.
Chronic with no meds can be done and done for years....Ive done it....was not fun but it was done.
PFDAN
............................jonny
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ClusterChuck
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Re: staring ........in the Face of clusters
« Reply #57 on: Jan 4th, 2004, 3:10pm » |
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on Jan 4th, 2004, 2:57pm, jonny wrote:| I would rather be chronic than episodic anyday....I never live in fear of that time of the year when the beast is going to rip me a new one.....I know what it is, where it is and when it will strike (For the most part) and I plan for it. |
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Right on, Jonny! I have said this many times, and most eposodics think I am crazy!
We chronics have learned to deal with this, just as Kim has learned to deal with no meds.
But still most of you are missing what Kim has said! Meds DON'T FUCKING WORK for her!
NO ONE is saying drugs and techneques should not be shared, and especially with the newbies. Kim is doing the same thing. MEDS DON"T WORK FOR HER, and she is proof that you can survive without meds. Why are so many bad mouthing her for doing the same thing most of us do? She is telling how she copes with it.
Sheesh!!!
Chuck
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Thomas Fuller
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BlueMeanie
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Re: staring ........in the Face of clusters
« Reply #58 on: Jan 4th, 2004, 3:34pm » |
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What I like about this board so much:
A chance to SHARE in conversations about CH's with other sufferers and supporters (people who know what this condition is all about).
I couple of months ago I thought I knew most everything about Clusters. After all, over thirty 10 week cycles and every med in the book. How could I NOT know everthing.
To me, this post is about LEARNING. The unknown seems to make us a little defensive.
Thanks for the post Kim. I've learned just a little more about Clusters and how they effect us all differently.
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Unsolved
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Re: staring ........in the Face of clusters
« Reply #59 on: Jan 4th, 2004, 3:35pm » |
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Well....I agree w/ a couple of things you guys have said...being chronic myself...knowing when an attack will most likely come is an advantage...but I still miss the PF times that epesodics enjoy.
And when meds don't work...I agree, Don't take em'. But, damn...I think I'd be on the hunt for something else that does work. (Hence...where I'm at now).
Thank god the Imitrex works for me !
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brain_cramps
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Re: staring ........in the Face of clusters
« Reply #60 on: Jan 4th, 2004, 3:35pm » |
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on Jan 4th, 2004, 1:49pm, Unsolved wrote:| Kim ~ You must NOT be suffering from KIP 9's and 10's like some of us... |
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WTF?
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jonny
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Re: staring ........in the Face of clusters
« Reply #61 on: Jan 4th, 2004, 4:12pm » |
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on Jan 3rd, 2004, 10:40pm, Ted wrote:| Jonny. Four times a night is tit. I thought you were king. |
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Just saw this.
Seeing that I found a prevenitive cocktail to work for me its been well over a decade since I had to deal with four a night, Do I forget just what four a night means?....probably some what because its been so long, but I dont forget doing it with only ice....like someone said in this thread "Dont get between me and my meds!!!!"
Lith and Verap still working, Ted....hope so dude!!
..............................jonny
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Mastifflvr28
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Re: staring ........in the Face of clusters
« Reply #62 on: Jan 4th, 2004, 4:54pm » |
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Chuck,
yes she IS saying drug info should not be shared:
kim said:
Quote:I neve fucking banged my head okay????I never had a "friend" "SHOOT ME WITH IMIT REX"
WHAT IS THIS ????I t hink it is a bad signal to people who could act ually be starting a life time of stuff.
they see ya stickin the imitrex and taking pictures of it...........i think ya are NOT ASSISTING in any way whatsoever. |
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Kim's way of dealing with clusters is not my problem, the above quote is. But it doesn't matter anyways, because ch.com will still be ch.com where we share info, techniques and even pictures
Mast
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Mastifflvr28 (aka Michelle A.)
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OXYGEN!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
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Linda_Howell
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Re: staring ........in the Face of clusters
« Reply #63 on: Jan 4th, 2004, 6:47pm » |
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and the above quote Mastiff just used, plus Kim said she doesn't like it when we give newbies info on using 02 and Imitrex is why so many of us are up in arms. Nothing else.
Kim has every right to not use meds and to say they don't work FOR HER and to post it. No one said otherwise. 02 works for the majority of us. Ch.com was meant for support and INFO and I'll be damned if I stop trying to help newbies by telling them to try 02, and I'll also support to the death Mastiff posting of that picture that had a concise message that some may not have understood. After all, I was there.
I am so OUT of this thread. As Charlie says......
BLEAGH!!!!!!!!
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ClusterChuck
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Re: staring ........in the Face of clusters
« Reply #64 on: Jan 4th, 2004, 7:42pm » |
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Mast and Linda, now I see why you are up in arms. Looking at it that way, I agree with you. BUT, I did not read it that way. The way I read it is that she is upset that it sometimes seems that some are saying you MUST take drugs. I felt she was saying that if they don't work for you, there are other ways of coping.
Cluster headaches are NOT imitrex and oxygen (or any other medication).
Cluster headaches are extreme pain and suffering and how you learn to deal with it. Whether is is medication, diet, lifestyle, Charlie's redirection technique, yoga, meditation, prayer, bananas on your forehead, cutting your hair (as my mother suggested) or anything else or combination of them.
In other words, there are MANY ways of dealing with this curse. Let all the newbies here hear ALL the ways of dealing, not just the drug approach. Which we do most of the methods, but rarely do we comment on the drug free methods.
My present "cycle" (even though I am chronic) is very resistant to any meds, except O2, which is only about 70% effective. I am still looking for the right combination. But in talking with people on this site, I have learned to deal with the hits that O2 did not help. If I never find the right drugs, I now know that I can continue to live, even if I have to be drug free.
That was the way I interpreted what Kim has said.
I am sorry I did not see your reading of Kim's comments.
Chuck
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Thomas Fuller
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jonny
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Re: staring ........in the Face of clusters
« Reply #65 on: Jan 4th, 2004, 8:08pm » |
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on Jan 4th, 2004, 7:42pm, ClusterChuck wrote:| Mast and Linda, now I see why you are up in arms. Looking at it that way, I agree with you. BUT, I did not read it that way. The way I read it is that she is upset that it sometimes seems that some are saying you MUST take drugs. I felt she was saying that if they don't work for you, there are other ways of coping. |
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Ditto Chuck......14 years chronic before meds and no one to help.....I did it and I did it alone!!!!!
...............................jonny
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cootie
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Re: staring ........in the Face of clusters
« Reply #66 on: Jan 4th, 2004, 8:23pm » |
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I think a GOOD supporter supports everyones opinion..."I know I do". So......your all RIGHT in my book. Not sure Brad could of gotten thru much more of this tho after his first year of chronic ch without sum sort of relief.....it was wearin him down mentally and physically and effect'n his work and realtionships drastically....it was gettin bad....not sure where it would of ended....or how without help. Deal with your own hell in your own way...I say that's the RIGHT way. No matter how ya look at it were all in this boat tagether with no cure.......lets row people. Supporter Pam that thinks ya all ROCK and me loves Kimmie-speak
And Robin Trower RULES.....he's my FAVORITE !! Hey Ted...how YOUH fuckin doin !!!!!! (smiles)
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Ree
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Re: staring ........in the Face of clusters
« Reply #67 on: Jan 4th, 2004, 8:27pm » |
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aren't you proud of me for not getting into this one...
til now............... To each HIS/HER own that's all I have to say... Young women today think it strange that WE had natural childbirth... I do too for that matter now after the fact... Why would anyone chose pain when there is an alternative to that intense pain...Today they have epidurals and paint their nails while in labor...
My opinion... I know I don't have CH but I have a Sufferer in my house that I have seen in all predicaments1) before we had meds........... suicidal pain... 2)With meds ... suffering with some relief and 3) Peek time during intense 10's when the meds don't work at all...
To each his own and not for anyone to judge... Our choice is to use the abortives and relief... with MY Support also which some people might frown on because they like to go it alone... I also saw alot of sufferers at the convention thank God for the support of others during that magic weekend............. again To each sufferer his own technique to get through the most horrendous pain imaginable to MAN/WOMAN... REE
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| « Last Edit: Jan 4th, 2004, 8:34pm by Ree » |
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cootie
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Re: staring ........in the Face of clusters
« Reply #68 on: Jan 4th, 2004, 8:36pm » |
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In human nature we learn from our expireinces includeing PAIN......it's fucked up havein pain for no reason and too often.....I don't think we have natural instincts to know how to deal with it in us nor do animals......it's jus plain WRONG ! Animals in pain go off by themselves or become distant . So......who knows what's really rite or wrong........hang in there and PF wishes to you all Pam
Why'd all this stuff get stirr'd up about the pics in NY and what went on...did I miss sumthin ? NO it wasn't jus a big party either......was 'mostly' people makein new freinds in a nice realxeing setting with sumthin in common.......instant bonding sum may of never expirienced till then. It was kick ass cool !
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| « Last Edit: Jan 4th, 2004, 8:38pm by cootie » |
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Cause and Effect......"Cause is the effect concealed, Effect is the cause revealed"
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jonny
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Re: staring ........in the Face of clusters
« Reply #69 on: Jan 4th, 2004, 8:41pm » |
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It was kick ass cool meeting you Coots....thats why your on my website!!!!
..................................jonny
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12gagueblast
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Re: staring ........in the Face of clusters
« Reply #70 on: Jan 4th, 2004, 11:02pm » |
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i took it the same way mastif did. not putting info out. truely sorry you have found nothing that works kim and if you are cool with that that is fine too. i hope they (CH) just goes away for all of us. But.....
If someone tells me they are cold i will certainly tell them about fire, even if some people do not like fire. i think it is only right.
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Paigelle
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Re: staring ........in the Face of clusters
« Reply #71 on: Jan 5th, 2004, 8:12am » |
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I think we should definitely let sufferers know about any and all help there is out there. I wouldn't know what to do if people here didn't offer some advice. It is great to know what is working for some and not working for others. When I go to the Dr about CH and they give me a new med, I don't get excited because I know the chances of it not working. If it works for a few hits, I still don't get excited, because I know it might not work for the others. But I would never withhold anything that might be of use for someone else. I think we should let people know about Imitrex and how it works for some. I tell people about it, but I also let them know that I can't use it. It is a matter a giving people options. Lord knows, I spent 20 years devoted to an ice pack and nothing else. I have found off and on meds that did work and then ones that screwed up the cycle worse than ever. But I always try, mainly for my son, so he can have a mother who is functioning.
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AlienSpaceBabe
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Re: staring ........in the Face of clusters
« Reply #72 on: Jan 5th, 2004, 10:41am » |
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When I reach that point where my hands are shaking so hard that I can't stick myself, I'll take another CHer sticking me over taking nothing.
Sorry you haven't found meds that work for you, Kim. Guess I'm lucky I have.... like most chronics, there are breakthroughs - sometimes 4 to 6 a day for a period of time.... but I wouldn't give up the verapamil!
Without preventative and abortive meds:
Couldn't have continued working in my current/past position... leading to loss of income... leading to loss of dwelling....
Couldn't have found the painfree time to spend with my kids and be the best mother I can be....
Couldn't have finished higher education....
Wouldn't be able to read books (those swimmy eyes make it hard to read).....
Wouldn't be able to drive (was too damn tired!)
AND.....
Without the medical info on this site:
I would not have oxygen (which works about 60% of the time, and fully aborts about 30% of the time)
I would not have imitrex injections (which work almost every time, and fully abort about 70% of the time)
I would not have tried prednisone (which gave me the pain holiday I needed 2 years ago in order to want to keep living)
Never would have tried verapamil (which works for me, keeping the high points down to breakthroughs and the low points to shadows or nothing)
THANK GOD for this site! This site gives us the information we all need in order to live with cluster headaches, whether we're chronic or episodic. It's OUR job to go through the information, discuss it with our doctor, and make the right decision for ourselves.
As for that infamous picture Michelle took: it made me cry.... guess you had to be there in order to really GET it. people getting hit, left and right.... That picture shows that it's not all fun-and-games at conventions... that people really DO get hit in public, in private, with friends, repeatedly.....
Just my 2 cents....
Lizzie
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Tiannia
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Re: staring ........in the Face of clusters
« Reply #73 on: Jan 5th, 2004, 10:57am » |
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on Jan 4th, 2004, 11:02pm, 12gagueblast wrote:| i took it the same way mastif did. not putting info out |
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This is where my thoughts came from as well. What I got from Kim's posts was that because Imitrex and O2 dont work for everyone that we shuold not tell people about them when they log on. I understand that a CH is not the meds we take or dont take, but the pain and the struggle that we live with daily. My log arse post just came from the the idea that without the advise, without the support, wothout thee comments that everyone has given me over the past 7 months, I think I would be in a very bad place now. As it is I have met some wonderful people that when it gets really hard I can send a pm and get the virtual hug that I need to get through. I can ask advise from dealing with doctors cause I am only starting out this long journey while many of you have been traveling for years. You stories, your comments, your successes and failures allow me to prepare myself for what I deal with and make me stronger. I know that there are more meds out there that wont work then there are ones that will. Without this site, I would hate to have been living in a prepetual nightmare of hoping that everything will stop these and not having a place to come when I needed to vent when they dont.
Tiannia
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Paigelle
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Re: staring ........in the Face of clusters
« Reply #74 on: Jan 5th, 2004, 11:02am » |
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on Jan 5th, 2004, 10:57am, Tiannia wrote:
This is where my thoughts came from as well. What I got from Kim's posts was that because Imitrex and O2 dont work for everyone that we shuold not tell people about them when they log on. I understand that a CH is not the meds we take or dont take, but the pain and the struggle that we live with daily. My log arse post just came from the the idea that without the advise, without the support, wothout thee comments that everyone has given me over the past 7 months, I think I would be in a very bad place now. As it is I have met some wonderful people that when it gets really hard I can send a pm and get the virtual hug that I need to get through. I can ask advise from dealing with doctors cause I am only starting out this long journey while many of you have been traveling for years. You stories, your comments, your successes and failures allow me to prepare myself for what I deal with and make me stronger. I know that there are more meds out there that wont work then there are ones that will. Without this site, I would hate to have been living in a prepetual nightmare of hoping that everything will stop these and not having a place to come when I needed to vent when they dont.
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Without this site, I would have went completely insane with my cycle. I needed the support from people who have been and are going through the same thing. The people who know exactly what it feels like and won't say take an aspirin. The people who you can depend on and who are willing to share advice and be there when you need them. I found that to be one of the most important things about this website. Yes, we get advice on medicine, but we get a helluva lot more than that.
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