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   Author  Topic: Can't Hang On  (Read 1078 times)
ilovesnow
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Can't Hang On
« on: Dec 17th, 2005, 11:25am »
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I'm new here and none of you have any reason to know me.  I've had episodic CH for 9 years now, for a total of 39 individual cluster cycles.  This one is by far the worst I've evr had and it's ruining my life.  I think I always knew they would.  Nothing new to any of you, I'm sure, but I can't sleep, I've lost most of my sense of humor, I can't rest, I can't eat, I can barely work a full day, I can't bear the ignorance and insensitivity in other people and everytime I go to the doctor, they say "hmmm sounds like cluster headaches."  I always want to ask if I can get my co-pay back since I did the diagnosing for them when I booked the appointment!  I've had a headache for more than 5 hours now with only a 20 minute break.  I'm almost out of tears and they're what keep me company in the middle of the night so now I'll be completely lost.  Why has this pain chosen me?  Why doesn't anything help give me relief?  How can I go on knowing that I'll feel this pain for the rest of my life?  Overly dramatic?  I can barely see I've slept less than 40 hours in 2 weeks.
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Re: Can't Hang On
« Reply #1 on: Dec 17th, 2005, 12:35pm »
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Hello and welcome,  
I'm sorry you had to come looking for us and I'm sorry you're having a tough time, like you said we can all relate but that doesn't make it any easier. You AREN'T alone though and we will do what we can to help.
What meds are you on at the moment and what have you tried? There IS help, there ARE things that will give you some relief and we WILL do all we can to help you find them
Hang in there, we're hanging right alongside you okay?
Regards
Helen
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Re: Can't Hang On
« Reply #2 on: Dec 17th, 2005, 1:11pm »
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Everything Helen said!
You're in Clusterville now........please tell us a bit about your Clusters....and what you are using. Please also look at the links on the left. There is a lot of help there waiting for you.  
Most of all, please know 2 things-
 
1-you are not alone
2-this cycle will pass
 
Please, hang in there, post when you can, and know that there are a ton of people either in your shoes right now, or standing by to help you cope!  
 
Wishing you PF real soon, Ilovesnow!
 
 Cathi
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Re: Can't Hang On
« Reply #3 on: Dec 17th, 2005, 4:24pm »
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Sure you can!!!!!
 
Take a deep breathe and read.
 
You will learn about and meet people who have experienced and still so experience everything that you do regarding pain.
 
Live life to the fullest.
 
Stay Strong.
 
Eric
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Re: Can't Hang On
« Reply #4 on: Dec 17th, 2005, 7:41pm »
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My previous treatments have included Butalbital (Fioricet), Prednisone, Oxygen, Verapamil, Imitrex and Frozen Broccoli.  I've found that the lumpy quality of frozen broccoli feels WONDERFUL when pressed into your temple or eye socket.  The best thing I've found!! I've read quite a bit about Kudzu and I think that's my next step becaue Imitrx, great as it may be, is a little too expensive for me.  If the Kudzu can break and prevent the clusters, it will be more than worth it! .  I've moved a few times in the past couple of years so I'm on my 3rd neurologist in 4 years.  Even though they call for records and even though they all do the same push on my arm, pull on my arm, walk a straight line tests, they all seem to think that the junk THEY prescribe will be the miracle cure.  For example, this is my 4th round of prednisone and I feel like screaming "IT DOESN'T WORK FOR ME."  New Dr. wants me to give it a try again because "people's bodies change.".  When this is over (5 days) I'm supposed to go in for an MRA which I've never had before so that will be good.  After I had my last MRI, the Dr. actually told me they were virtyally useless for these types of headaches.  This is part of my frustration as well...who can I believe?  Everyone has different information and, meanwhile, I'm miserable.  I just hope I don't have a headache the day of my MRA because lying still is clearly out of the question!  Thanks for responding to me today and please pardon my Jeckyll and Hyde behavior.
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Re: Can't Hang On
« Reply #5 on: Dec 17th, 2005, 8:39pm »
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Welcome aboard.
 
You are definately not alone.  The sleep thing (or lack of) is something I and many others know all too well.  I can personally tell you that I know exactly how severe sleep deprivation makes one feel.  It's not even a bad case insomnia, we want to sleep, but are either afraid to, or when we do - we wake to a head bashing that most folks couldn't begin to comprehend.  And when that one's over we know that sleep will most likely lead to another.  
 
The only way to hang on is to be positive about something.  Doesn't matter what, just pick something that's always good and hang on to it.  I know its easier said than done but it is important.
 
I haven't found abortives to work for me but higher combined doses of Lithium Carbonate (1,200mg), Verapamil (720mg) and Melatonin (9mg 30-45min. before bed) make life more liveable, not perfect, just liveable.  It took quite a bit of experimenting and record keeping to find this mix so be ready to work at it.    
 
Let the nightmare win the battles but don't let it win the war.  
 
Best Wishes
 
Tom    
 
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Re: Can't Hang On
« Reply #6 on: Dec 18th, 2005, 1:32am »
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Welcome and this is true... we understand, we are here for you and you are not alone.
 
Tom is right, we are all here to do battle but even though it doesn't seem so at the time, you must focus on winning the war.  It will pass but you are stronger than you feel at this moment.
 
Jekyll and Hyde behaviour is totally acceptable in Clusterville.
 
You hang on and lots of vibes coming your way.
 
Jas
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Re: Can't Hang On
« Reply #7 on: Dec 18th, 2005, 9:54am »
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stay with it.....sometimes the light seems like it is far away and then you get the right combo of meds and bam you feel human again.  you are with family here and we ALL know what you are going thru so feel free to vent all of your frustrations here.
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Re: Can't Hang On
« Reply #8 on: Dec 18th, 2005, 4:33pm »
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We always got plenty of rope here.  Grab ahold and hang on while you read everything you can here.
 
Welcome to your family.
 
Smileymelly
 
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Kate in Oz
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Re: Can't Hang On
« Reply #9 on: Dec 18th, 2005, 7:13pm »
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hug
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Kris_in_SJ
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Re: Can't Hang On
« Reply #10 on: Dec 18th, 2005, 8:24pm »
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Welcome Ilovesnow,
 
It's a hateful diagnosis, but you've found an understanding and supporting family  Venting is encouraged here.
 
As said above, read all you can - arm yourself with information and demand the treatment and meds you deserve.  Melatonin if great for night hits, and Zyprexa is a newer med on the cluster radar that might work as an abortive for you if others fail.  Search the board, and PM anyone who you feel might be of help.  That's one of things we're here for.
 
Hugs and PF Wishes,
 
Kris
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Re: Can't Hang On
« Reply #11 on: Dec 19th, 2005, 6:39am »
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Deepest sympathy you're here.
 
Thing is you can beat this now. Nowehere else on this planet has more experience of CH.  Read first, ask lots more and you won't go far wrong.
 
I'm episodic and my breakthrough was clusterbusters - last year 50 odd hits in the cluster, this year 4 just using O2 and advice from their website.
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Re: Can't Hang On
« Reply #12 on: Dec 19th, 2005, 7:34am »
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Wellcome! I'm new here, too and cannot describe how wonderful everyone is. The links and available resources here are quite considerable and as soon as you feel up to it you should take advantage of them.
 
Unfortunately, the number of CH sufferers are something like .1% of the general population. Those numbers are statistically small and I believe may be one of the reasons finding doctors really familiar with the problem is so difficult. Variability amongst us also makes finding the right treatment difficult.
 
Hopefully by now you are feeling a bit better and will realize that you really Can Hang On!
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Re: Can't Hang On
« Reply #13 on: Dec 19th, 2005, 11:19pm »
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you must not givin my freind i know that seems simple to say but its a fact ive been where you are ive been to the lowest and most desperate place ive seen and i too was on that edge not so long ago ive lost my wife many jobs and countless other things but thats what they are things and they can be replaced you canot be replaced .
you need to dig deep and hard into yourself and survive thru one cycle or even smaller one hit at atime all of us here do know how you feel and im sure we have all been where you are .
there are many weapons here to use against the beast for me i use alternative methods and have found away to find pain free time you have to keep trying what you read here you will find something that helps just dont give up your a cluster head we all are here and i truley believe that we are that toughest people on earth because of what we live thru.
talk type scream rant rave do what you have to here we will understand and we are here for you.
god bless you and be strong.
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