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Topic: runaway cluster bride (Read 350 times) |
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clusterkat
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clusterkat clinging by her claws
 
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runaway cluster bride
« on: Jun 7th, 2005, 10:20am » |
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hay everybody,
yeah, i know how to spell, so save the comments, i write like i talk, & we are all fellow suffers not critics.
i need to write this while im not on a chronic pain binge.
cause of my condition, which has worsened, i had to post-pone my wedding for a year to a man i adore. thats just one example of how these cluster attacks have ruled my life this past year. my question is this: has anyone eles had to make drastic changes in thier lifestyle?
im learnin skills to cope but my lifestyle is suffering as much i am. thankfully i have a very understanding & loving soul mate. but i've thought of bolting on Him many times cause of these bloody headaches.
(((posting painfree today)))
^kat
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LeLimey
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Re: runaway cluster bride
« Reply #1 on: Jun 7th, 2005, 10:30am » |
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Hi Kat,
I think just about everyone here has probably been where you are now.
Yes we have had to make drastic changes and yes it does feel bloody unfair.. no scratch that it IS bloody unfair.
We can't change it though. We have broken hypothalmathingies and we just have to accept it and get on with it. I know that sounds harsh but I also know you wouldn't be posting if you weren't sick to the back tetth of letting the beast control your life. Its time to fight back girlie and we are just the bunch to help you do it!
First and foremost weapon in our arsenal is education. Read all you can here about treatments. I don't know what you are taking currently but there are loads of options and one of them will be your silver bullet. There are conventional and alternative methods of pain relief (I hate those words they both sound "wrong" to me.. but I know no others!)
There are different ways of taking meds. IE Cheddens method of lithium pulsing which has worked brilliantly for a couple of sufferers that have tried it.
Tell us a bit more about you and what you are taking and we can tell you of our experiences and hopefully give you some idea's to take to your doc/neuro.
Remember none of us are doctors, we can give you the benefit of our experience but we can't choose what is best for you as we don't know your medical history so you need to discuss all options with your doctor.
We WILL help you, bear with us and we'll work together okay?!
Take care of you, tell us what you are on and how your cycle is ok?
Helen
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marlinsfan
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Re: runaway cluster bride
« Reply #2 on: Jun 7th, 2005, 11:00am » |
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Over the years the intensity of my HAs has gotten a bit worse. Since I got married 9 years ago, I am stronger and want to fight and get over the headaches because I want to be around the woman I love and she wants to be around me. If I had not found and married her, I don't know if I would have wanted to stick around, if you get my drift. Before I met her, when I was in cycle and had no idea what was happening to me, I considered the ultimate abortive more than once.
Don't let your man go. It's easier to deal with the beast with an awesome supporter by your side.
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Jasen
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Re: runaway cluster bride
« Reply #3 on: Jun 7th, 2005, 12:36pm » |
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You mean other then spending most every non work related hr. in bed napping or sleeping because you feel run down from the meds all the time or just the lack of socail life due to the meds. and thier expense  
Yea, it's caused some changes in my life. Not as drastic as before getting some relief, but things are still pretty boring 'round here.
Better days 
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E-Double
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Re: runaway cluster bride
« Reply #4 on: Jun 7th, 2005, 2:05pm » |
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Stay as positive as you can and have meds stockpiled and ready for battle if/when needed.
Life goes on ya just need to live it!
Took me a long time to stop questioning the "Beast" and to get motivated to start living.
I'm a Special education teacher/Behavior analyst and run home schools for developmentally disabled toddlers.
I go from house to house all day and have to teach, counsel, and train. It gets hectic but I have learned to never leave home without my meds regardless how I feel(sometimes feel great....then BAM!)
Keep your chin up and remember... "IT IS WHAT IT IS" so breathe and try to live to the best of your abilities.
Oh yeah.....I got married in November....while in Cycle!
As much as it can interfere with life.....DO NOT ALLOW IT TO DO SO!!!!
My reason is especially because of this fact.....
Ya may be episodic but it can change.......
I went a decade every year 2 brief cycles.....This latest just never broke....
I refused to stop living once I got over the initial anxiety.
It's part of my life but will not control it!
Hugs to you and good luck!
You can always drop me a line if you want to talk specifically about the angst of CH and a wedding
Hugs,
Eric
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BarbaraD
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Re: runaway cluster bride
« Reply #5 on: Jun 7th, 2005, 5:49pm » |
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My husband worked overseas most of the time and rarely saw me in cycle. But then he had a stroke and moved home and I went chronic (not because of him). He couldn't handle it and divorced me (after 40 years). So I had to deal with the really bad part all by myself. BUT I'm a hellofalot stronger now than I was before that.
Now he's sick and I'm taking care of him. Go figure!!!
Don't let this interfer with your wedding if he understands and is supportive. And YES, you will have a few lifestyle changes. Sometimes social occasions have to be cancelled at the last minute, but you can deal with this.
Just stay strong and fight the damn beast at every opportunity.
GOod luck and lots of Texas hugs
BD
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What don't kill ya, Makes ya stonger!
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clusterkat
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clusterkat clinging by her claws
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Re: runaway cluster bride
« Reply #6 on: Jun 8th, 2005, 10:51am » |
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just a word of thanx for all the support, i belong to many message boards & this one has been the most comforting & informative.
alittle more about myself: i have been down for 2 years w/ chronic migraines, a.k.a. clusters after a battery of cat-scans, blood work & many doctors, it was determined i suffer from cluster headaches.
medication therapys; ive tried it all, except H20, which is difficult to obtain from many doctors. abortive meds are giving me some relief, topomax worked @ first, now im on inderal which seems to be working alittle + imitrex pill & injections, relpax & midren, not all @ once but i have to switch off cause of rebound headaches, etc.
triggers: mine are certian foods ( list gets biggers), smells, noise & smoking (IM A NON-SMOKING NEWBIE), beer & wine are like putting a gun to my head & pullin the trigger! these are all lifestyle issues that i can control with the exception of depression & that monster visits me regularly.
thanx for listenin everybody & being kind to me.
((group hugs))
^kat
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lionsound
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Re: runaway cluster bride
« Reply #7 on: Jun 8th, 2005, 3:25pm » |
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kat,
Ch is a part of you..but it is not who you are.
At times I have made drastic changes because of my HA's and I will not do that anymore. I can't ...because then my heart hurts too.
Please go on living your life to the fullest!!! Don't let CH stop you from living the life you need and deserve!!!
Be well and PF,
hugs,
lionsound
oh-I noticed you listed more than one triptan in your med list. Please be careful and DO NOT mix triptans within 24 hours of each other. Very dangerous. It could kill you.
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sandie99
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Re: runaway cluster bride
« Reply #8 on: Jun 8th, 2005, 3:44pm » |
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Kat,
sounds familiar. Making big changes, that is. Ch made my social life diminish because as a chronic I have them every day. Ch has tortured me since 2001 and I slowly got back to the dating scene this fall. But it's not simple to tell about it to a new person.
Ch nearly destroyed me last spring. I was sure that there was no way out of that depression I got. I struggled in a great deal with my dissertation, but I finished it and got my BA degree.
But having said that, every dark cloud has a silver lining. Mine is that I'm finally living a healthy life. I altered my diet and my ch attacks are milder and I feel lot better. I finally got rid of overweight and I don't stress that much about things. Ch has changed my priorities. I understand now to take better care of myself.
You have a fiance who understands. Recall that always, that's a huge resource. And so is your ch family right here! We're here for you!
Take your time with things, do it your way. Don't let ch break you. I've accepted that it's part of me, almost every day. But still, as contradictory as it may sound, but I don't let it control me. I'm doing my MA right now, and I'm gonna finish it on the schedule I decided, no matter what ch does.
So your wedding is postponed. Think of it as a time to design and plan presicely the sort of wedding you and your fiance have always dreamed about! Optimism works on hard times, believe me.
Good luck. 
Best wishes,
Sandie
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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Jonny
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Re: runaway cluster bride
« Reply #9 on: Jun 8th, 2005, 6:28pm » |
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on Jun 8th, 2005, 10:51am, clusterkat wrote:| except H20, which is difficult to obtain from many doctors. |
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You dont need a script for H20, just walk to your sink and turn it on 
I know you meant 02.....try a welding supply house, its the same 02 as medical.
...................................jonny
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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
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yikes-another-one
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Re: runaway cluster bride
« Reply #10 on: Jun 8th, 2005, 6:44pm » |
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it will get better.
that's the only thing that keeps me going.
and I get 4 - 8 headaches every single day. 
ugh. 
Hanging around these guys helps you get tough. 
No time to get down or depressed.
Have too much info to wade through and
too many new treatments to try.
Besides. When you get fed up enough,
you threatent he beast and push him around,
you tell him he can't take any more from your life
than he already has.... 
sometimes just getting busy helps.
(Not much, but it's nice to be busy anyway.) 
Best wishes. I know it's diffcult to postpone
the joyous event, but the time will fly and this time next year you will wonder why you ever worried.
Teamwork.
That's the thing that gets you through the rough patches. So hang in there, hold tight to your good man, and keep writing. That's all you need to do. 
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cazman
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Re: runaway cluster bride
« Reply #11 on: Jun 8th, 2005, 9:40pm » |
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for me it changes alot when in cycling i sometimes sleep in my walkin closet cuase light does not get in there and anylight even a vcr light is like bullets smashing my skull, im trying to open my own company doing computer repair my own hours so i can work around the beasts , i become lets say uneasy to be around into week 3 , by week 5&6 im not a nice person at all , wy wife though is very strong and she help as much as she can i wish she would come on the site and read some but she doesn,t , its my life its the cards im dealt 60% of my year is pf and i will have to live with that and be happy for now. be strong seek help share with others
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