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Topic: New and Looking for Support! (Read 507 times) |
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MAKR2001
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It is so great to have found this site! I hope to meet someone that can support me through this.
I am looking for a Christian cluster supporter that suffers from these headaches and believes in the power of prayer!
I have had Clusters since 1986, I was 16 when they started. I was not diagnosed with Clusters until 1994, when I went to my PCP and he knew what I had because he had them, too!.
He sent me to a great Neurologist, Dr. Matte, who quickly diagnosed me as having clusters, but said she understood how other Docs had misdiagnosed.
I do not fit the usual profile of a Cluster sufferer. I am female! I do not participate in the usual triggers, smoking, drinking, etc. My clusters are every 2 to 3 years, last 2 months, left side one bout, right side the other bout, have thrown up during some of them, and can lay still to "ride it out." But the diary I gave her with the onset dates and durations and symptoms helped her to diagnose me.
I have been on several preventative medications, Verapamil and steriods. Nothing works.
The only thing that I have found to abort one after it starts is a Ziploc bag full of ice cubes (not crushed, the hard big cubes work best). I fill the bag with ice cubes, squeeze all of the air out, then position it at the base of my neck (where the two boney balls are on either side of the head), then lay down on the ice pack putting all the pressure my head can stand on the ice pack. My head freezes and the cluster aborts in about 10 minutes.
My greatest struggle is handling a cluster when my children are with me ( I have a 7 and 3 year old). My husband works shifts, so I have to manage the pain without him helping with the children. I actually had a round of clusters during my 8th - 9th month of pregnancy and had a cluster the night I gave birth!
While I having been dealing with these for many years, my husband and family have no clue!!! what I go through. I have given them countless printouts and they have even watched me during a couple of the clusters, but still don't get it!
My last round was in March of 2002 and last night was the beginning of the this round. Please pray for me!
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clarence
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Wake up
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Re: New and Looking for Support!
« Reply #1 on: Oct 24th, 2004, 3:29pm » |
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Welcome to the community. 
It really is a difficult thing dealing with these "headaches," and if you want support, you have come to the right place. Everyone here is very supportive and knowledgable. My battle with clusters has been more bearable just knowing that there are people here to talk to who go through the same things that I do. People who actually understand the pain.
As you poke around the site, try to learn as much as you can. You mention that no abortives work for you. Have you tried Oxygen or Imitrex (sumatriptan)? These have proved to be very effective for a lot of us. Although, a ziploc with ice probably has less long-term effects than do triptans and steroids. 
Tell us a bit more about yourself, like your name.  And I do pray that you get some relief soon.
Casey
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NY Yankees Suck!!!
"Bart, don't make fun of Grad students. They just made a terrible life decision," Marge Simpson
Where I live: http://rainfallsoneveryone.com
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don
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Re: New and Looking for Support!
« Reply #2 on: Oct 24th, 2004, 5:10pm » |
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Quote:| I am looking for a Christian cluster supporter |
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Are you insinuating that a non Christian sufferer is of no help?
Sufferers here are not that discriminatory.
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| « Last Edit: Oct 24th, 2004, 5:14pm by don » |
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AussieBrian
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Got beer?
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Re: New and Looking for Support!
« Reply #3 on: Oct 25th, 2004, 3:01am » |
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I'm not a Christian, but by God I'm on your side.
We all live in hope.
There's no cure here, but there's friends who understand.
AussieBrian
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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pubgirl
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Re: New and Looking for Support!
« Reply #4 on: Oct 25th, 2004, 3:47am » |
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Hi there
I'm a Christian but am afraid that I tend to direct the power of prayer to people worse off than me.
You say Verapimil didn't work. It is worth talking us through what your regime was as there is a very good chance it was being dosed wrongly if it didn't work as a very high proportion of doctors don't understand how to use it properly for Ch sufferers.
Wendy
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Bob_Johnson
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Re: New and Looking for Support!
« Reply #5 on: Oct 25th, 2004, 8:07am » |
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Wendy is absolutely right! With clusters, no single trial of any med is adequate experience to declare success or failure. It's quite common to have to adjust dosing several times to find the most effective one for you--or try various combinations of meds.
I'd suggest that you buy:
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience. Highly recommended.
You may wishe to explore:
WWW.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options.
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Bob Johnson
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fullhead
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GET UP OFFA THAT THANG & DANCE TILL YOU FEEL BETTA
 
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Re: New and Looking for Support!
« Reply #6 on: Oct 25th, 2004, 10:25am » |
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As you are discovering, there are some extremely helpful people on this site, Christian and non-Christian alike! I personally happen to be an active Christian who will send up a prayer for you, but Don was appropriately offended – this is a place where you’ll find much help, friendship and love. As a newby myself (first post: “Hello Headache people” 10/15) I have already made friends from this site whom I correspond with daily now via email and have even visited one in my local area (a potential golfing partner!), who even gave me some leftover ZOMIG! These are both Christian and non-Christian.
Sorry you have to have this kind of pain in life. I am 34 also and know that this is definitely not something to look forward to in life! Hopefully, life the rest of us you’ll discover help from fiends, reprieve from meds. and courage from God. Whatever you do, don’t allow the pain to push you further away, but use it to draw you nearer…
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Thought I was the only Wacko till I found yall!
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PMCMG
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Re: New and Looking for Support!
« Reply #7 on: Oct 25th, 2004, 12:01pm » |
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LOOKING FOR DONNA D ...MARK, KAREN STEVE? SOMEONE CALL ME.....PLEASE
!!!!!!!!!!!!!!!!1
MICHELE GRAHAM
8665021996
TOLL FREE
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don
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Re: New and Looking for Support!
« Reply #8 on: Oct 25th, 2004, 12:25pm » |
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Quote:
Isn't that like Jumbo Shrimp?
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ArCane
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Onward through the fog
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Re: New and Looking for Support!
« Reply #9 on: Oct 25th, 2004, 1:18pm » |
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The truely Christian thing to do is to not care if someone is Christian, and help, pray for, and support them anyway. God loves everyone, not just the Christians. If God is love than God is at clusterheadaches.com  . Weither someone is Christian or not is irrelavent here.
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Alchemy’s First Law of Equivalent Exchange: To obtain, something of equal value must be lost.
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pubgirl
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Re: New and Looking for Support!
« Reply #10 on: Oct 25th, 2004, 9:18pm » |
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This is the place to get help, no need to delete yourself.
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godsjoy777
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HIS name is above clusters
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Re: New and Looking for Support!
« Reply #11 on: Oct 26th, 2004, 9:08am » |
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Makr2001.....Please come on back.....look all around....lots of opinions will fly....but mostly lots of love and lots of help....I understand where you are coming from.....You want like mindedness.....but you also want someone who has been through the same wringer you have been through.....so here you are....We will all be here to help.....and pray.
Blessings,
Karen
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don
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Re: New and Looking for Support!
« Reply #12 on: Oct 26th, 2004, 9:26am » |
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Plenty of help here.
Just loosen up your bible belt and get comfortable.
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becky8
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Re: New and Looking for Support!
« Reply #13 on: Oct 26th, 2004, 10:16am » |
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Either way you came to the right place for help, I became new just a couple of months ago, and these CHer's helped me so so much. Just read and learn, but after you read check out everything for your self. The best post from people I got were the ones that had a site to go to read for myself, but the love around also helps ALOT!!!And GOD knows we need it!!! 
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angel-ache
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heaven cries too
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Re: New and Looking for Support!
« Reply #14 on: Oct 26th, 2004, 8:59pm » |
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Christian or not, we are going to be here for you.
Promise.
God listens...Clusterheads support.
Angela
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"We gather strength from sadness and from pain. Each time we die we learn to live again." Unknown Author
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Charlie
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Re: New and Looking for Support!
« Reply #15 on: Oct 26th, 2004, 10:05pm » |
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Welcome to the fold. You'll find lots of support here and good ideas for dealing with this horror. From older posts, I think you'll find that have cluster attacks during pregnacny isn't at all common. Our systems seem to prioritize a bit and shut out the beast when it's life and death or birth. Sorry to hear you had to deal with that.
Here is something that worked for me:
Dr. Wright’s Circulatory Technique
What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck
Charlie
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Kevin_M
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Re: New and Looking for Support!
« Reply #16 on: Oct 26th, 2004, 10:53pm » |
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on Oct 24th, 2004, 12:07pm, MAKR2001 wrote:| It is so great to have found this site! I hope to meet someone that can support me through this. |
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Sometimes your first thought is your best thought.
Quote:| I am looking for a Christian cluster supporter that suffers from these headaches and believes in the power of prayer! |
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the human hands that were objectively extended can
only reach those that show up. Kind of a finite limitation we have.
Kevin M
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thebbz
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Ow,Ow,Ow
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Re: New and Looking for Support!
« Reply #17 on: Nov 3rd, 2004, 11:09pm » |
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I will gladly pray. One coming your way . Hope you are feeling better.'
BB
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It wasn't me I didn't do it
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ssantos
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Re: New and Looking for Support!
« Reply #18 on: Nov 5th, 2004, 2:58am » |
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Hello - I am a new member & so happy that I found this site. It's just amazing to see that there are so many other people out there who are suffering from the same thing that I am - clusters. I'm from South Africa & it's a pity that we don't have any such thing as a cluster headache support system. Or a website where we can interact with other sufferes. Unfortunately the % of sufferers in SA is very low. I've been suffering from clusters for the past 5 years. I was diagnosed immediately after I landed up in ER the first time. I was in remission for 2 years even though my Nurosurgen warned me that it was recurrable in cycles yearly or monthly. 2 Months ago they came back with a vengence! I was in so much pain that I was rushed to ER and stayed in hospital for the next three days..They had to drugged me totally just to stop the pain.. I also have an active peptic ulcer so I was put on drips and given injections. As some of the medication could not be taken orally - It was a living nightmare. I was constaintly ill and desperate. I cannot believe that sufferes like me and you actually live through this. It is also such a pity that some people, as I'm sure you all have been through this - do not have a clue what we go through and the intensity of the pain. It's not about feeling pity for us - just about understanding and supporting! After three days of intense therapy of drugs, injections, drips and oxygen therapy I was taken home with more medication. I am back at work but still on medication that is tolerant. My Nuro wants to 'kill it' as he states completely and be sure it's gone (at least for now).I have to take this treatment for the next 2 months - that would be already going onto 4 months that this has been going on - that is 4 months set back on my life. I would like to know whether other sufferers feel the same and go through the same thing - My life was put on hold for these 4 months... I could not concentrate on my studies, I could not go to the gym as the medication was too strong. Every nightly dose of medication made me boomed out! I had not slept this well in years... due to the medication of cause. The clusters wake me up as I fall into my 2 hour sleep - the medication is strong so that it would not wake me up and assist in taking effect. I am trying to function normal now although I am terrified that they return again too soon - the pain would just be unbareable! I am comfortable being on the medication as it's my only source of security that they won't be back. I also find myself desperate for medication (which is very unlike me)because I feel so scared that the pain will re surface! After these two months of taking the treatment, it's back to the Nuro for another check-up. It's one doctor's appointment after another.. not very nice. Thank you for this wonderful website - it's a true comfort... take care.
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SSantos
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sandie99
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Re: New and Looking for Support!
« Reply #19 on: Nov 5th, 2004, 3:26pm » |
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Welcome to the CH family! 
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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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Pippa
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Re: New and Looking for Support!
« Reply #20 on: Nov 8th, 2004, 3:33pm » |
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God bless you! I don't have children, so I can't imagine what you go through. I know exactly what you mean when you say that your family doesn't understand. My husband hasn't got a clue as to how I feel on a daily basis. My headache has been around since Feb. of 2003.
May I ask you something? You mentioned that you suffered while you were pregnant. Were your headaches any different during your pregnancy. I'm 26 and have been married for 3 years now, so I don't know if I'm being told this because the family wants a baby or if it's true, but I;ve been told that the hormones during a pregnancy reduce the headache. Did you find that to be true?
A
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Jonny
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Re: New and Looking for Support!
« Reply #21 on: Nov 8th, 2004, 3:39pm » |
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on Nov 8th, 2004, 3:33pm, Pippa wrote:God bless you! I don't have children, so I can't imagine what you go through. I know exactly what you mean when you say that your family doesn't understand. My husband hasn't got a clue as to how I feel on a daily basis. My headache has been around since Feb. of 2003.
May I ask you something? You mentioned that you suffered while you were pregnant. Were your headaches any different during your pregnancy. I'm 26 and have been married for 3 years now, so I don't know if I'm being told this because the family wants a baby or if it's true, but I;ve been told that the hormones during a pregnancy reduce the headache. Did you find that to be true?
A |
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Your talking to a ghost, the name is in black....that means the person deleted their profile from this site.
................................jonny
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sevlow
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Re: New and Looking for Support!
« Reply #22 on: Nov 8th, 2004, 3:43pm » |
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Pippa,
The hormones during pregnancy can/will cause all kinds of new things to happen to you and/or your body. My wife doesn't suffer CH, but has migraines, and during her pregnancy she did not have a single headache. Not one, but then about two months after our daughter was born they came back just like always. However, I also have a friend who never gets headaches, and she told me that she used to get headaches all the time when she was pregnant.
Each person is different. Whether your family is telling you that just because they are looking for grandbabies or not, only they know.
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