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Topic: I'm new round here! My husband is the sufferer (Read 616 times) |
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Alys
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I'm new round here! My husband is the sufferer
« on: Oct 16th, 2007, 12:37am » |
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Hi everyone.
My name is Alys and my husband, Roy is the clusterhead. He has been suffering for 12 years and I've been with him for 6 of those. He was diagnosed as chronic 4 years ago and he has not been pain free for nearly 2 years now.
We have tried just about everything for his beast. Having only Lithium and surgery left. Lithium treatment was started today. And surgery not an option for us because no one in New Zealand wants to do it as we were told by his specialist yesterday.
I have had a good read around the message boards and I just wanted to let you all know that it's like I'm reading about the nights we have here. Roy tries to pretend that they aren't 'that bad', or 'not a major one'.
Thank you so much for everything you guys do here and the support that you give eachother. It's really made me open my eyes and realise just how much pain he is in when he says its not that bad. I see every day in his eyes that they are 'that bad' and they are 'major ones'. I know he is just trying to protect me from the pain he is in every day. We deal with it in ways that we can.
It's so great seeing people around the world getting together and looking after one another rather than just sitting around bitching.
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George_J
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Re: I'm new round here! My husband is the sufferer
« Reply #1 on: Oct 16th, 2007, 12:56am » |
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Welcome, Alys. 
Has he tried oxygen therapy yet? It's an effective abortive treatment for about 70 percent of us. See the "oxygen info" link at the left side of your screen.
Let us know a little about what he's tried or hasn't--perhaps we can steer you towards some alternatives he hasn't tried.
Again welcome, and best wishes,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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Alys
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Married to a CH sufferer for 6 years
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Re: I'm new round here! My husband is the sufferer
« Reply #2 on: Oct 16th, 2007, 1:09am » |
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We've tried Oxygen. Diltiazem. Verapasomething. Energy drinks. Not smoking. (went 6 weeks and didn't help so he started again, it just about the only think that relaxes him and I always know exactly when the headache has gone because he asks me very sweetly if I can light him one). Not drinking (haven't had a drink in 6 months). Blood pressure medication. Muscle relaxatants. Had a C.A.T. Scan.
Even his specialist is stumped for anything more.
Roy has explained to me a thousand time what they are like for him and they vary so much from day to day. They are changing all the time and very rarely is the attack the same the next time it arrives.
You've all probably heard it before, but we are beyond frustrated with this pain. And I've often said to him I would give anything to take it away for him. He is a very strong person and he strives to not let it take over, but after a minimum of 2 attacks everyday (shadows or full on 'face aches' as he calls them) for nearly two years he's starting to get down.
We got married 2 years ago this month, and the stupid beast got him on our wedding day. Why the hell does this have to happen to people??
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sandie99
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Wish it, dream it, do it - inspite the pain!
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Re: I'm new round here! My husband is the sufferer
« Reply #3 on: Oct 16th, 2007, 3:00am » |
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Alys,
welcome!
I'm a sufferer myself and it's wonderful that you've joined the ch family to help your husband. You, the supporters, are very important to us, more than we can say at times.
I know very well that protecting part, too. I live with my boyfriend and I've done everything I can to protect him from witnessing what this demon can do to me.
It's a long shot, but has your husband tried ginger ale/ginger tea? I found that cold ginger ale actually does help with the shadows. It's worth a try, it he has not tried that one yet.
What about taurine or caffeine tablets? Water treatment? Kudzu?
I wish you lots of strength and lots of PF days to your husband.
Best wishes,
Sanna
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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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Alys
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Re: I'm new round here! My husband is the sufferer
« Reply #4 on: Oct 16th, 2007, 3:48am » |
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What is kudzu?
He has tried codiene and pretty sure every kind of over the counter and prescription pain reliever. It's like he develops an immunity to them after a while.
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DennisM1045
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Re: I'm new round here! My husband is the sufferer
« Reply #5 on: Oct 16th, 2007, 10:16am » |
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Welcom Alys! I think it's great you are so supportive of Roy. I'm sure he knows how lucky he is to have you. 
Read through this link: http://www.plainboard.com/ch/chtherapy.pdf. If you guys have tried everything listsed then you really have gone through what is known to work.
Lithium is a good med that works for some. I don't have any experience with it but I hope it is his magic bullet.
Oxygen therapy is a great abort but can take some practice to learn how to use. I would encourage him to give it another go. Please review the info here: http://www.ouch-us.org/medications/oxygen/o2links.htm. The supplemental guide will tell you everything you need to know. The therapy was much more successful for me after I read it.
Kudzu is an alternative treatment. Kudzu is a root that grows wild. Some companies sell it as a supplement. Just google "Kudzu site:www.clusterheadaches.com" and you'll find lots to read  If he has tried everything else then he should certainly give this a shot.
I hope you both get a break soon.
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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Guiseppi
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Re: I'm new round here! My husband is the sufferer
« Reply #6 on: Oct 16th, 2007, 11:33am » |
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Lithium has been my "silver bullet." I'm 47, male, weigh about 190, episodic, generally get 2 cycles a year, spring and fall. I use 1200 mg of lithium a day when on cycle and it blocks up to 90% of my headaches. Oxygen and imitrex injectables manage most of the rest. I hope it proves as helpful for him.
Bless you for being a supporter. I've been getting these damned things almost 30 years, my wife's been with me for 27, married to me for 25 years of this stuff. I don't know how I'd have handled it without her. She's the one that found this board for me! Good luck to both of you.
Guiseppi
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Rosybabe
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Re: I'm new round here! My husband is the sufferer
« Reply #7 on: Oct 16th, 2007, 12:00pm » |
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God bless you Alys for being such a great supporter! You are already helping Roy just for being there for him, I thank you for that  .
I am really sorry he is having such a bad time with CH. I am a sufferer and luckily episodic.
Please check this site, it may be worth to try alternative medicine.
http://www.clusterbusters.com/
Hope whatever the route you take against the beast will work for Roy.
Tell him to sign in, it always help to talk to someone who shares the pain.
Wishing you guys lots and lots of pain free time!
Hugs
Rosy.
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 Believing is just the beginning!
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RichardN
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Re: I'm new round here! My husband is the sufferer
« Reply #8 on: Oct 16th, 2007, 11:18pm » |
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Hi Alys . . . and Welcome to our Neighborhood
It was my wife who found this site for me 2/02, after more than a year of "normal" tests, mis-diagnosis and non-working meds. These guys gave me my life back.
You and Roy make sure and read the "cluster traits" & "the kip scale" (links on left) and hopefully we can get him coming here to share his pain with us . . . not just you. We DO understand . . . it's not your (or his) cross to bear alone anymore.
One of my favorite mottos on this board is, "Nothing works for everyone, but SOMETHING works for everyone", and here, you have a very good chance of finding the "something" that works for Roy.
PLEASE consider trying the 02 again . . . . it must be used properly to get the desired results . . . it is my only abortive and I go nowhere without it.
Thanks for being a supporter,
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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AussieBrian
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Re: I'm new round here! My husband is the sufferer
« Reply #9 on: Oct 17th, 2007, 9:27pm » |
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G'day Alys, and welcome. Try this link regarding oxygen because I believe the NZ system to be pretty similar to this side of the ditch. It was put together by Barry from Karatha and let us know if we can help in any other way.
http://mushys.com/kiwi
Go the Wallabies,
Brian.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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AElf
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Re: I'm new round here! My husband is the sufferer
« Reply #10 on: Oct 18th, 2007, 10:58am » |
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Hi!
I"m AElf. I'm a Clusterhead supporter. My husband and I have been married 20 years and he's suffered that entire time. He became "officially disabled" about 2 years ago. The last time we figured it out, he hadn't had 24 hours pain free since sometime in 1999. Our 11 year old can't remember his dad pain free, our 15 year old can only remember a few days here and there.
I'm glad I found this site, I have truly felt alone in dealing with the chronic illness. There are so few people who aren't sufferers who truly know what it is like to watch your loved one suffer so much. I hope to get to know people so I don't feel so alone. (And no, I'm not feeling sorry for myself, I just am tired of people not having a clue about what life is like for the Clusterhead and their family).
AElf
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Alys
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Re: I'm new round here! My husband is the sufferer
« Reply #11 on: Oct 18th, 2007, 4:23pm » |
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Thank you to all of you! Who would have thought that there was so many people out there who would offer their support!
In regards to the Oxygen Therapy, we had oxygen bottles here for 6 months last year and as soon as Roy felt the face ache coming along, he would crank it up and stick the mask on. After nearly 45 minutes one night he gave up and hasn't bothered since. It just didn't work!
I cant pretend to know what the pain is like for him at all, and I cant pretend that I understand what you all go through. But as I watch him every day it breaks my heart into a millions pieces every time it gets him.
I have had two children by c-section and after my daughter (now 18months), I got an infection in my uterus and couldn't walk for nearly a week due to the pain. Roy put his bullshit aside to help me, even though I knew that he was suffering as well, and I would go through that again to take his headaches away!
He has been on the Lithium for three days now, and he seems to think that it's taken away most of the severity of the headaches. But is still shadowing alot. He told me that there is always pressure in his head like it's just waiting to come back and punch him again. But so far so good, the beast was kept at bay last night.
FINGERS AND TOES CROSSED.
Even though I don't actually know anyone else that suffers from these insane headaches, I am eternally grateful that there are actually people out there that care and understand.
Thank you all so very very much!  
Alys
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| « Last Edit: Oct 18th, 2007, 4:26pm by Alys » |
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Alys
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Married to a CH sufferer for 6 years
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Re: I'm new round here! My husband is the sufferer
« Reply #12 on: Oct 18th, 2007, 4:32pm » |
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on Oct 18th, 2007, 10:58am, AElf wrote:| Our 11 year old can't remember his dad pain free, our 15 year old can only remember a few days here and there. |
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Roy was a solo Dad for 3 years with his daughter, Codie, that is now 11. She lived with him from 2yrs til she went to school and she used to be his supporter. She would get him cold flannels and drinks of water. When he gets an attack during the day, even now, she just does it automatically. She takes my kids away, Ethan, 3, and Akaylah, 18 months, so Dad can 'sort his shit out'. She was brilliant for him back then, and I think that sometimes kids are the best things for pain because they love unconditionally, and so sincere in feeling the pain with you. All we have to do is say 'Dad's got a headache' and they just seem to understand and the volume always goes down and they just creep around.
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Rosybabe
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Re: I'm new round here! My husband is the sufferer
« Reply #13 on: Oct 19th, 2007, 2:34pm » |
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Hi AElf!
Thanks for being such a wonderful supporter!!
You are not alone anymore and there is a lot of information you can get from this board and from O.U.C.H.
Here is the link:
http://www.ouch-us.org/index.shtml
It would be good if you get your husband to come to the board...
Children are our best supporters...they are little angels that God sent to us to remind us that life is still beautiful.
Pain free wishes for your husband!!
Rosy.
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Believing is just the beginning!
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