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Topic: how do I deal with outbursts?? (Read 477 times) |
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tina_L
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how do I deal with outbursts??
« on: Sep 14th, 2005, 10:32pm » |
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hi,
I am new here and have never posted on any websites before but I have spent lots of time on this site trying to understand and learn about CH and feel I need some help.
My boyfriend John has chornic headaches for the past 10 years - I have been with him for the last 1.5 yrs.
My heart breaks when I see him in such pain - he wants to be left alone - so I give him space.
I just don't know what else I can do - he is on meds but still get at least 2 headaches a day sometimes over 6. And I have yet to see a remission period. 
I do not profess to know the pain he must be going through although I have tried hard to understand - he doesn't want to talk about this topic AT ALL. Every time it is brought up he get incrediably irritaded and defensive. He tells me it is a disease that he has to live with and doesn't want any one feeling sorry for him.
My problem is not knowing how to deal with his moods and outbursts. I take them personally (although I know deep down that he is just frustrated).
I feel like I have to walk on eggshells around him (watching that he doesn't get irritated or upset for fear that a headache will come on).
I am at a loss on how to deal with this - if he was open to me helping him it would be at least something.....but he wants to deal by himself.
I love him very much and when he is does not have his headaches he is the sweetest most loving man.
The past 3 summer months have been incredibly bad in term of the frequency.
How can I deal with this so that we can go back to living a calm, happy existance again ?
Any advice anyone can give me/us would be really appreciated.
I do not want this to tear us apart.  
(sorry for the long winded post - I promise to keep my next one shorter - I told you I was new at this! 
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AussieBrian
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Re: how do I deal with outbursts??
« Reply #1 on: Sep 15th, 2005, 6:37am » |
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Tina, apologise for nothing. So far you've done nothing wrong and everything right.
I'm a sufferer myself, so can only look at it from a sufferer's point of view, and coping with this beast is hell. You're a supporter which must be hell x 100.
Giving him his space is terrifically important but I can't begin to imagine the emotional toll this must have on you. See if you can't encourage him towards CH.com so he can perhaps discuss things with others who know what it's like from the inside.
In the meantime, you're now amongst the many supporters who know exactly what you're going through yourself.
Chin up, chest out (not that far) and things will look much better in the morning.
Welcome home,
Brian.
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deltadarlin
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Re: how do I deal with outbursts??
« Reply #2 on: Sep 15th, 2005, 6:45am » |
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Tina,
Hi and welcome. I'm Carolyn~aka~DeltaDarlin' and my husband, Redneck has had clusters for well over 20 years now (although he is NOT chronic). When he has been in cycle (especially the early years), I felt just like you did (and I had a small child to deal with too).
I know exactly what you mean when you talk about *taking things personally*, it's almost impossible not to do that. Right now, you are doing the best thing you can do and that is gathering information. As to helping him, the best thing you can do is (a)leave him alone if that's what he wants, (b) make sure that outside irritants don't bother him, (c)if he likes a cold rag to hold on his head, keep them coming.
When he tells you that he wants to deal with this himself, you might want to remind him, that although you can't *feel/take away* his pain, it is affecting you too and you just don't want to feel so helpless. Some may disagree, but don't walk on eggshells. As far as I know, when a ch'er is not having a headache, getting angry is not going to trigger one.
Wait until he's not having a headache, sit him down and talk to him. Don't say, "this is how *you* make me feel when *you* do this. Instead, say, "I feel this way when this happens. What can we do to make this better for us both?".
Parterning with a ch'er is difficult, but it is doable and it takes work on BOTH sides. He has to realize that you are hurting too.
A question though. Does he/has he used O2 as an abortive?
'darlin
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tina_L
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Re: how do I deal with outbursts??
« Reply #3 on: Sep 15th, 2005, 8:15am » |
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thanks Brian and darlin for your responses and kind words. .... you don't know what it means to know that there are people out there who understand the other side . I don't have any person in my life who has come close to dealing with something like this - and unfortunately there are no manuals.
John take immitrix injections as an abortive. I have learned early on that on the onset of a headache to leave him alone - and afterwards as well for a while....
If there is tension around him (ie: a heated conversation or just too much going on around him) there is always a good chance that he will get one.
Brian, it is nice to hear from a sufferers point of view - as I need to distinguish between what is part of the CH and what is just plain communicative skills.
I agree with the approach you mentioned darlin' - we had a very heated discussion about this last night and I have left him a note telling him that I am trying my best to understand and relate (although I know I can't come close). I told him that if he needs me to leave him alone then I will - but where is the line?
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Margi
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Re: how do I deal with outbursts??
« Reply #4 on: Sep 15th, 2005, 9:03am » |
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Hi Tina - welcome. Sorry to hear you're going through this cluster hell. My husband is a sufferer, too, and we've been dealing with this for nearly 20 years now. He's episodic, though, meaning that he does get remission periods between his cycles. Sound like John is chronic (no more than 30 days pain free in the 12 month period)? Mike, my boy, is in the longest cycle of his life at the moment, coming close to 10 months here (and we're fearing the word "chronic" in our house right now, too).
I've walked in your shoes, Tina - know the eggshell feeling intimately. Your best defense is to repeat and BELIEVE "it's the beast, not the boy". It's NOT personal. But they go through pain that you and I simply can not imagine. All we can do, really, is respect it. It's like trying to stop a freight train with a feather, that's how powerless we are against this crap. So our best defense is understanding and educating ourselves.
Having said all that, though, there are some things that John can do to help as well and probably HIS best defense is to talk to other clusterheads. Staying calm is huge in the battle, and very hard for them to do. But Mike has learned if he gives in and gets upset with his attacks his blood pressure escalates and so does his pain. Oxygen has been a Godsend for us - it forces him to sit down and breathe and it usually aborts within about 10 minutes for him. Imitrex can cause more attacks (and more type A personality traits if you ask me). Mike tries to only use imitrex as a last resort now.
Ice is a big calmer, too. Go to Shoppers and get him one of those gel-filled bags and keep it in the freezer. Have him lay one on the back of his neck at onset and it will help him to stay calm.
Come check us out at our Canadian site, Tina - we have a few folks in Quebec now and I believe we do have a family in the Dorval area. And please feel free to email me off the board - sometimes we supporters need to vent and scream to each other and don't feel comfy talking in public like this. moxie_miss@hotmail.com. Trust me, honey - nothing you say can surprise me. Been there, done that - even got some t-shirts for OUCH Canada I can send you!
hugs,
Margi
(Calgary)
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minnie
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Re: how do I deal with outbursts??
« Reply #5 on: Sep 15th, 2005, 10:16am » |
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Hi Tina sorry you and John are having to go through
this.you've recieved great advice really can't really add more.I will say look into oxygen it works for my husband Billy and many others on this site. read the oxygen links for the right mask and liters.it has to be a non-rebreather mask and has to go over 8 lpms.Good luck and please keep us informed we are here for info but especially support please don't ever worry about the length of your post get whatever you need off your chest.
Minnie
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SteCo
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Re: how do I deal with outbursts??
« Reply #6 on: Sep 15th, 2005, 10:23am » |
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Hi Tina,
Quote:If there is tension around him (ie: a heated conversation or just too much going on around him) there is always a good chance that he will get one.
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Sufferer here too.
The above quote is me too. Wife does everything she can to lower ANY stress situation that may bring one on.
Not fair to her at all I know.
You, the supporter, are not alone. I could not imagine having to be on your end of the stick. I think it is equally as hard for a supporter...another type of pain, one that goes deep into the heart.
May I suggest some things for you and him.
Tell him to get on this site, on the advice of a fellow sufferer...just knowing there are many others like him is good therapy, it did wonders for me. Or leave the beginning page of this site on the computer for him to happen to see when he gets home.
The trex is used by many on this site to abort CH's, but in some folks...may cause rebounds. Hopefully not tho.
Another GREAT abort is....and I can not emphasize this enough....O2, yes pure oxygen. If you look at the convention pics for clusterheads/supporters...there are O2 bottles EVERYWHERE in the hotel rooms.
On the left hand column of this page is an oxygen button and here is the link to look at...
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Pay particular attention to the high flow regulator and non-rebreather mask.......both important for this to work quickly and effectively. If he says he has tried it in the past...TRY AGAIN....
Again, get him on this site....most important, and get O2.
Continue to be strong and thanks for being a supporter!
SteCo
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| « Last Edit: Sep 15th, 2005, 10:25am by SteCo » |
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jcmquix
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Re: how do I deal with outbursts??
« Reply #7 on: Sep 15th, 2005, 3:11pm » |
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I am a Suffer'er too... But let me tell you the weight that was lifted off my sholders when I found this site.... but I was still having a hard time dealing at home and at work... no one really understood what I was feeling & going through.... even though I told them a million times, that it was CH....
Finally one day my wife (Sassy_Lady) got to the end of her stick... We were not understanding each other and we were not talkin at all.... She was upset & scared cause when I have a CH attack I lock myself in the bathroom and all my meds.... I do not want to be touched and I do not want to talk....
Now she is not only a supporter for me but for many others on this site, and she has many many friends who support her in other things gong on in our lives...
The Short of this story is this site not only saved my life... and I mean SAVED my LIFE.... but I think it also SAVED out Marriage....
Get John here and get him reading.... I think he will stay... I DID !!!
Prayer's & thought's going out to You & John
God Bless Ya's
Charlie
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Major
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Re: how do I deal with outbursts??
« Reply #8 on: Sep 21st, 2005, 9:24pm » |
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Hi Tina from another fellow Canadian supporter...
I can't agree more with what everybody has said already. My husband and I are relatively new to CH - he had his first CH in June 2004, and his first cycle has not stopped yet. I don't know where I would be without this site and the Cdn site - the ability to find good information on treatment options (like oxygen and kudzu, our favourites) and being able to interact with other people in the same boat is just fantastic. So sorry to hear that you are having to deal with this, but that being said, you can be rest assured that you have come to a great place.
We have had the same conversations in our house - Jeff has the ha's, but even though I don't have physical pain, the emotional toll of dealing with all this is significant. It is incredibly difficult to watch one you love deal with such pain.
I too would encourage John to at least visit the site to see what its all about. Or you might try my favourite strategy... printing information out and placing it in convenient spots all over the house!! Jeff just isn't an internet bulletin board posting kind of guy.... so I had to get him info one way or another, and my info sheets seem to have worked. Another thing I did a while back was get one of the Cdn sufferers that I met to send him an email directly - that helped alot, and I think made him realize how much CH affected my life too when a complete stranger wrote to him about life with CH!
Good luck to you both and welcome aboard.
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