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rascleo

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Is there Hope?
Mar 27^th, 2011 at 7:12am

I just finished going through, yet another Cluster Headache, 4:11 a.m. I'm now not working, I've had to take a 1 year unpaid medical leave of absence. I was in hospital last week for 5 days doing the DHE treatment, unfortunately it didn't work. My life has been reduced to Dr. visits, ER's a lot of medication, using O2 and rocking and crying 8 times/day.Not sure how much more I can take. I have Chronic Cluster Headaches and have not had a break from them in over 2 years. They have completely damaged the quality of my life, my career, my relationship, and any sense of purpose I once had. I've had 4 procedures, none of which worked. I am at the point of begging my medical team to do something, anything, and to do it fast. My will power to continue on is quickly fading!

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Richard in San Diego

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Melissa CH.com Moderator CH.com Alumnus Offline Don't give up! Posts: 7238 Central WI, USA Gender:	Re: Is there Hope? Reply #1 - Mar 27^th, 2011 at 7:50am I would research this website Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
Back to top	Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way. ~Bernie S. Siegel IP Logged

Brew

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Re: Is there Hope?
Reply #2 - Mar 27^th, 2011 at 8:47am

Quote:

I was in hospital last week for 5 days doing the DHE treatment, unfortunately it didn't work.

Were you pain free at all during the treatment itself? DHE won't break the cycle, but if it gave you any pain-free time at all while you were in the hospital, it's an indication that the clusterbuster method will work for you. Check Melissa's link. Also try this one:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

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Mosaicwench

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Re: Is there Hope?
Reply #3 - Mar 27^th, 2011 at 10:41am

Are you going this alone? Do you have a loved one who is supporting you? We support supporters too, so if there's someone who helps you out, send him/her here.

You're not alone in this. Most of the sufferers here can tell almost identical stories to yours. There is help and good information available, and it might need to come from people here to pass on to your medical team.

I didn't see you mention oxygen. Read all the links in yellow on the left regarding oxygen. It's helped a LOT of folks here reclaim their lives.

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“Be regular and orderly in your life, so that you may be violent and original in your work.”
~Flaubert

http://www.facebook.com/home.php?id=1240423960&ref

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E-Double CH.com Alumnus Offline Are we ourselves? Posts: 6948 Commack,New_York Gender:	Re: Is there Hope? Reply #4 - Mar 27^th, 2011 at 11:54am Check you're other thread.
Back to top	I can't believe that I have to bang my Head against this wall again. But the blows they have just a little more Space in-between them. Gonna take a breath and try again. IP Logged

Jackie

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Re: Is there Hope?
Reply #5 - Mar 27^th, 2011 at 12:16pm

Oh yes, there IS hope. My husband was chronic for 15 years. He is now in remission....two years. Alternative treatments do work for many but not all. We were lucky.

Study all you can both here and on the OUCH site.

Tell us about your 02 use....how many lpm, type mask, etc.

You'll fine tons of support here. Keep talking to us. You are no longer alone in this battle.

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Callico CH.com Hall of Famer Offline Author of "Stranded at Romson's Lodge Posts: 4916 Aurora IL Gender:	Re: Is there Hope? Reply #6 - Mar 28^th, 2011 at 1:07am Over 8 years chronic here, and yes there is hope. I would echo Melissa and Brew's posts. Jerry
Back to top	"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown) IP Logged

Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: Is there Hope? Reply #7 - Mar 28^th, 2011 at 4:28am Just over a month from being officially chronic here and yes, as the others say, there is more than hope, there is the reality of being able to control CHs enough to enjoy life between hits. What medication are you on? Are you working with a headache specialist neuro?
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BarbaraD CH.com Alumnus Offline Hugs to ya Posts: 8333 Douglasville, TX Gender:	Re: Is there Hope? Reply #8 - Mar 28^th, 2011 at 7:01am Echoing others posts. Have been chronic since '97 and YES, there is hope for a LIFE... It's just finding it and ATTITUDE about it. ' Give us some details... We're here to HELP and that's what we do. Talk to us...
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Joshl924

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question
Reply #9 - Mar 28^th, 2011 at 9:08pm

For you guys and gals that are chronic... At what point did you realize you were chronic, at 5 months?

Also I was curious what the frequency and timing of your hits are throughout a given, day, week, month.... any other info you want to provide. Im just trying to figure out what I might be able to expect and se if I can detect patterns.

sorry Im still kinda new here to both this board and the beast..

Keep on keeping on... as eric clapton said... it's got to get better in a little while

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Is there Hope? Reply #10 - Mar 28^th, 2011 at 9:19pm "Chronic" is a definition: Going for a period of one year without a pain-free break of 30 days or more.
Back to top	"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand IP Logged

Callico

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Re: Is there Hope?
Reply #11 - Mar 28^th, 2011 at 10:50pm

In the early days before I learned some things here I could count on 11 AM, 1 PM, 5 PM, 9 PM 11 PM, 1 AM each within 5 minutes of the time every day. Some days I got to have one or two others just for fun. Most of these would be of a K7- K8 variety.

You CAN make it and have a life, but you have to work at it. In particular, you have to work on your attitude. When you get to the place you understand you are not defined by your affliction, but rather a living person with an affliction who LIVES life between the hits you will know you are going to be OK. It is a matter of choice. It is THEN that you can begin to put your life back together and learn how to deal with this malady.

There is a tremendous amount of information available here, and more at Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

. May I strongly suggest you do your own research and determine what is the best method for you? Feel free to ask questions, but when you do be wiling to accept the answers without getting your knickers in a knot if someone answers in a manner that doesn't suit you. Very often there is a purpose to the answer and the method of answering. As Denny (one of the old-old timers that you don't see here much anymore) used to say, "Take what you need, and leave the rest".

Jerry

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"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

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