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MidgetNMinx
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New Supporter wondering how to talk to him?!?!
« on: Mar 19th, 2008, 6:27pm »
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Hello all! I'm new to this so please bare with me like you have so many others! My boyfriend just told me that he suffers from CH. Prior to two days ago I had never heard of Cluster Headaches. I have spent the last two days almost straight looking at sites like this, clusterbuster (as he uses the RC Seeds and O2), O.U.C.H., and just about anything else I can get to come up in a search engine or links from one of these sites.  
 
I have never seen him suffer an attack as he's in a remission period now, but his normal cycle puts him getting hit in the fall. Although I hope he never has to suffer another attack, I'd like to be as best prepared BEFORE it happens. I've watched several videos of people suffering an attack, and frankly it breaks my heart to think of him going through that, but I want to help however I can!  
 
I can tell just by the little he's talked to me about this that it's something he has had very bad experiences with telling others, and I would love advice on what to and NOT to say to help with this. I want him to know that I don't see him any different now that I know then I did before I knew he lived with this, except I respect the fact that he's lived with this for so long and manages to not just survive but actually LIVES!
 
I fully respect his choices in treatments after all the reading I've done and even managed to point him to sites that I'd found that helped him adjust certain doses. He's a very well informed CHer so I'm not so much looking for ways to help him treat this as ways to better support him emotionally, and to help communicate with him. It killed me to see him afraid to tell me about this as normally he's a very open, direct, and generally sweet man. To watch him “shrink” when he told me made me want to find whoever had caused that reaction in him and .... well..... (insert imagination here)! Angry  
 
I realize I'll NEVER know what he honestly suffers during a hit. I'll never be able to make it all better, fix it, or take it all away. I'm a mother of a 6 year old boy with vicious Asthma so I know all about that helpless feeling and just doing what you can, when you can. I want to do that for my boyfriend as well, and I learned with my son that those who've “walked in the shoes” are the BEST source of info on the do's, don't, and maybes.  
 
Thank you all for the support I've seen you provide so many others as I've read through this site, and thank you for taking the time to read this as well. Hopefully someday they will find the cause AND the cure to this nasty piece of work!
 
MidgetNMinx
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Re: New Supporter wondering how to talk to him?!?!
« Reply #1 on: Mar 19th, 2008, 6:40pm »
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MM,  
 
   If you watched the video of either Cluster Chuck or Artonio getting hit, than you can only imagine what it is like for us who suffer to be seen having an attack.  Besides the actual pain there is nothing more frightening for us to think of someone watching us thrash around, pace, rock back and forth, slinging snot, cuss and curse the day we were born.   We're not ourselves and we're certainly not a pretty sight.  So THAT is where he is coming from.
 
When he isn't in the throes of an attack sit down with that normally sweet man and ask him what he would like you to do or not do for him during a hit.  Don't take it personally if he says he wants to be alone.  
 
Make sure that anything he uses to abort a hit is always ready and waiting for him.  Stock the fridge with the energy drinks, make certain that his 02 bottles are always full, ice packs in the freezer,  meds that he takes refilled on time.  Those sort of things.
 
Reading here and on the OUCH page and educating yourself is a help to him also even if he doesn't say that to you.  You may find a few things here that he hasn't even thought of and that you can print out and leave for him to read.
 
You sound like a wonderful supporter.  Now make sure you take care of YOU  as well. None of us sufferers would know what to do if it wasn't for you guys.
 
Linda
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Re: New Supporter wondering how to talk to him?!?!
« Reply #2 on: Mar 19th, 2008, 6:46pm »
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God bless you for being a supporter, I'm a sufferer of 30 years, my wife has stuck it out for 28 of those years! We couldn't do it without you.
 
I'm like your husband, only the people closest to me, and the CH people, know I have CH. It's embarrassing to be that out of control. Imagine how you'd feel if he had to hold your hair back while you threw up from being too drunk. That's the "humiliated/helpless" feeling I get when I'm getting slammed.
 
You've already done so much just educating yourself so the actual attack won't scare you. It won't kill him, it just hurts. If you ever witness an attack, help him with his oxygen, ice, whatever else he needs then follow his cue. I like my wife to leave me alone, she respects and undertsands that. Then she fixes me something light to eat afterwards cuz I feel like hell!
 
You're a strong lady, a kid with asthma and a BF with CH, hugs and kisses your way you rock! thumbsup
 
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Re: New Supporter wondering how to talk to him?!?!
« Reply #3 on: Mar 19th, 2008, 6:52pm »
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Your post just warmed my heart.  
 
You have no idea how many people walk out on sufferers because CH is a beast to live with - as well as to suffer from.  
 
I know all about living with it - I've been a supporter for 16+ years.
 
My advice would be to ask your BF what HE wants you to do during an attack.  It's great to be prepared, but if your chosen method of intervention feels intrusive to him, he'll try to hide the attacks.
 
I know from experience that I just have to leave my DH alone.  I warn my son that it's happening, I turn off the tv and I leave the room.  My DH would rather be alone with his oxygen and abortives than have me (or us) sitting there watching him.  If it happens in public we search for a semi-private, cool, quiet, place (if at all possible), or we pull over and I drive while he goes to the backseat.
 
I'll warn you that once you see an attack you will never look at him the same way.  If you're like many of us, your respect meter will spike for him.  How ANYONE can endure pain like that and go right back to normal amazes me every time I see it.  And I've been watching a loooong time.
 
I'll also tell you that it's perfectly natural to stand on your porch or patio and cry your eyes out.  It's perfectly natural to be annoyed that your dinner plans got interrupted or canceled, or that your BF disappears to abort a hit during visits from friends and family.  Just realize that you're annoyed at the BEAST, not the sufferer.  
 
I think you're well on your way to being a fabulous supporter to your BF.  I hope he realizes how rare and special you are.
 
God bless both of you.
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MidgetNMinx
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Re: New Supporter wondering how to talk to him?!?!
« Reply #4 on: Mar 19th, 2008, 10:38pm »
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blush Thank you for the warm responses to my questions.  
 
My boyfriend is normally very open with me, and we will spend hours doing nothing more than talking. Once CH came up it was a whole different monster. I can't even begin to imagine how hard it must have been for him to confide this in me.
 
Naturally as a mother of small kids my first thought was "Ok, how would this affect my kids"! I will never be able to express how glad I am that I didn't say that to him! I bit my tongue and listened to the very few details that he gave on it (to the point I had to ask the name of the condition and how it was treated). He gave me a rather funny look when he told me, then asked me why I wanted to know. If only you could have seen his face when I said I wanted to research it!  
 
After my two days of combing through everything I could get my eyes on (I'm an exceptionally fast reader, and have great comprehension skills so I can devour info pretty quickly) I can finally understand his look of complete disbelief. I can't fathom how someone could walk out on another person because they have a medical condition that they can't help! I figure I'll ask him to be perfect when I figure out how to pull that one off myself!Grin
 
As someone who has suffered migraines my whole teen and adult life I wouldn't fault him for wanting to be alone as that is my preferred way to deal with pain as well, and my pain is pathetic compared to CH from what I can understand! Due to my own wimpy little headaches my kids are already “trained” to the “Mommy's head hurts baby”, and they will go and find something quiet to play with in their room for a while. Kids are amazing at understanding what is dealt them in life!
 
I just wanted the best way to discuss this with my boyfriend without coming across as insensitive, stupid, or unfeeling. I wouldn't wish him more hurt for anything, and honestly want to understand this condition as best as a nonsufferer ever can.
 
Thank you all so much for your support!
MM  grin2
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Re: New Supporter wondering how to talk to him?!?!
« Reply #5 on: Mar 20th, 2008, 2:35am »
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Welcome, MM, and my greatest respects.  Whether you realize it or not, you're already a fantastic supporter.
 
As others have said, don't be offended if he wishes to be alone with it--many of us do.  I've had CH for much longer than my daughter has been around (she's 17) and I've never allowed her to see an attack.  Even my wife of 32 years has only seen a few of them.  We truly are not ourselves when we're getting hit, and a lot of us don't want the people we love to see that.  I know that some of us don't mind if another person is around, but the first thing I want to do when I get hit is to hide.
 
Just remember--if you happen to see one, as alarming as it can be (and it can be pretty frightening) it won't kill him.  It will pass.  It always does.  Don't try to intervene.  We all learn our own ways of getting through an attack, and trying to deal with something or someone else while fighting is simply not possible.  It takes all the strength we have to get through it.
 
As for how to talk to him about this--you're already doing the right things.  See if you can continue the conversation.  It might make him feel a lot better if there's someone he can be open with about this thing.  Chances are he's more worried about frightening you off with it than anything.  I know I was.
 
All the best,
 
George
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It all comes to light in the sheer
Debonair.
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Re: New Supporter wondering how to talk to him?!?!
« Reply #6 on: Mar 20th, 2008, 6:23am »
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Thanks for being a good supporter.
 
I am a sufferer for the 17 years or so and married for 15 of those years. I have had the opportunity to share most of my feelings about CH with my wife. Not all at once, but over the years. When I found this site, and found others openly talking about CH it opened me up to all those in my life.
 
I had, prior to coming here, actually held a strange idea that if I talk about CH I might bring them on sooner. Several newbies have inferred the same thing. My wife, after I started to talk about them more started to have the same worry, tht if I focus so much on them, maybe I'm bringing them on. She was soon set straight on that idea.
 
Anyway. I've found it is easier to talk about them as different subjects that have popped up here get discussed. Even the funny (maybe not for everybody) ones like "where is the worst place you've ever gotten hit?" What's the craziest thing you've ever done to relieve the pain? I've done some crazy, funny stuff regarding CH, as most everyone has. I've actually been crying laughing so hard at some of the stories. Once you start talking about the that kind of stuff it easier to segway into some of the harder emotions that come with the turf (because they are there too).
 
Scott
 
 
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Re: New Supporter wondering how to talk to him?!?!
« Reply #7 on: Mar 20th, 2008, 7:03am »
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Hi and welcome  Smiley
 
Thanks for being such a wonderful supporter. Its a hard job and it can be full of surprises. This beast changes and changes on you ... as soon as you think you have it figured out and set up a management plan that works, it changes on you again.
 
I am a supporter for my husband who has CH. His last cycle lasted for 8 months without a days break. He was hit every single day for the whole 8 months. Some days were better with just 1 or 2 low kip hits, others were very hard with up to 8 hits in 24 hrs. Those kip 10s were like being in the torture chamber, the screams and the cries .... were almost inhuman.
 
What I have learnt as a supporter is to roll with the punches. Be as flexible as an elastic band, even more. Dont have fixed idea on anything but be open minded at all times, but at the same time , chant to yourself like a mantra that "this too shall pass" and "we can beat it". Without hope and a positive attitude one can crumble very quickly.
 
On the practical side, let him lead, strictly and at all times, even when it goes against what you may believe. If he says to you banging his head with his fist during a hit helps, dont argue with it. If he says running outside almost naked in sub zero temperature helps, let him do so. He knows what works for him and what works for CH defies common sense sometimes.  
 
Another thing to be aware of is that the pain changes a person, temporarily. He may be grumpy, agitated, easily upset and possibly depressed during a hard cycle. He may yell and scream and curse like you have never seen him before while being hit. He may yell and scream at you if you get too close or try to touch him while he is hit, or he may beg you to kill him off now as he cant take another minute of it .... As hard as it sounds, keep calm, keep cool and back off then, its not him, its the pain speaking, dont take it to heart. You can hate the condition but love the person, learn to separate the two.  
 
Lastly, live to the max in between times, when he is painfree, be in that present time and enjoy it. Dont dwell on the previous hits and dont fret about the next hit. Live as if the last hit is going to be just that, the last hit.  
 
Hugs and all the best wishes to you.
 
 
Edited to add : I tend to read a lot about CH then just ask him about what I read casually. Like " Hey, this is what I read, what do you think ? do you experience the same thing ? is that similar to how you feel ? " etc. If he wants to talk about it or to explain it to you, he will keep the conversation going on the topic. If he doesnt want to talk about it, he will grunt something short or incomprehensible in reply, so you know to leave it for the time being.  
 
Men have an unique way to let women know when they are not interested in some topic : they answer you in single syllables  Tongue  
« Last Edit: Mar 20th, 2008, 7:10am by Annette » IP Logged

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Re: New Supporter wondering how to talk to him?!?!
« Reply #8 on: Mar 20th, 2008, 10:02pm »
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you rock!!!!
 
Tons of thanks and respect
 
E
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