Hi there

Thankyou for all the support and answers that I have read on this website. :) I am a very recent supporter and my new boyfriend suffers Chronic CH. I have learnt alot about all the treatments and abortives from all of you. (Thankyou).

The only thing I am struggling to figure out is how do I know if my partner wants me near him during an attack or to leave him alone. I have asked him many of times and everytime the answer is different. He is on oxygen n various tablets and sometimes he likes to pace the room. He wont speak much during an attack due to the pain so I cant ask him at the time of the attack.

I worry so much that I am not doing enough to comfort him and I feel so helpless.

I work at a hospital and have two sides to me, my proffesional head that can help him without getting emotional. Then my girlfriend head that just wants to break down n cry when I see him in such pain. :'(

Any advise woud be greatly appreciated.

Snowfie xxxx

Here is my short answer, as my wife and I both suffer, we actually met through here.

When either of us is getting hit, we usually like to be alone but will sneak a peek in on each other so as to insure we are not hurting ourselves.  And when it's getting near the end, bring in a glass of ice water and walk away.  Trying to ask some one what they need during a hit is usually not good.  Just make sure the O2 is available, maybe switch tanks out for them if one goes empty, make sure imitrex/zomig/whatever you may use is there.  Otherwise it's best to just not be around, some of us still feel embarassed to have some one see us in the midst of an attack.  Good luck to you both and it's nice to see that you are concerned enough to be here. 

Hi and welcome!

He's a lucky guy to have you on his side.  Personally I want to be left well alone during a hit - the last thing I would want would be someone talking to me, but then I usually wake in the night with it and I'm not amused!!!!  Having said that everyone is different.  I guess best to talk about it with him during his pain free time.

Wish you all the best!!  Glad you found us  :)

Kate

Kate in Oz wrote on Aug 26^th, 2010 at 11:53pm:

I guess best to talk about it with him during his pain free time. Kate

100% ditto.  That is the only time to engage in conversation with a CHer.

Agostino Leyre wrote on Aug 27^th, 2010 at 10:32am:

Kate in Oz wrote on Aug 26th, 2010 at 11:53pm:   I guess best to talk about it with him during his pain free time. Kate 100% ditto.  That is the only time to engage in conversation with a CHer.

I'd also avoid the time just before and after the normal times the beast arrives. For myself, I know that just before I get a bit irritable and just after a CH I'm normally feeling not quite on top form especially after a Kip 9 / 10.

I'd also vote to leave him alone, otherwise he'll feel obligated to tell you he doesn't need anything and maybe even feel a little guilty (I'm projecting here) - neither of these help his pain.  My guess is that he'll tell if you if he needs anything.

Stay within hearing distance in case he needs you during an attack and yes, tell him you want to be there for him, but only if he wants you to be.

I do my crying and grumbling out on the patio - away from my sufferer.  He's got enough on his plate without worrying about me.

When I hear the oxygen going (or when I realize I can't find Joe while he's in cycle and go looking for him in his usual hiding places) I make sure he has a redbull, and I get the icepack out of the freezer. Hey may or may not want that stuff, but I'll put them in reach.

Other than that, like Pat said I leave the room, either go in the other room or outside. He doesn't want people around worrying or fussing over him. He'll come find me when he's over it, or  he might go take a nap.

Wait for when he is NOT having an attack to talk to him.  Rarely is there anyone who doesn't ask/need to be alone.  I ask my husband to start the coffee as soon as I feel one coming on.  He brings it to me with an ice cube in it so I can gulp it fast.  If I know my 02 tank is almost gone I scream for him to set up the next one.  After that he leaves me alone...with the door ajar like others have said so he can hear if it gets bad and I start to do some serious damage to the drywall.   Oh and my skull too. 

One other thing that supporters do is crucial:  When we are out in public...steering  us to the safety of the car or somewhere that no one will see us is more important than I can tell you.  Getting hit in public is one of our worst fears.  I've had the Police called on me and my husband totally took care of it.  I'd have married him for that reason alone.

ANYONE trying to talk to me when I need to focus and bang my head is going to get a black eye or something thrown at them.  Nothing personal...just leave me alone til it's over. 

Afterwards he'll rub my neck and shoulders due to the tenseness.

We who have this condition hold our supporters in very high esteem.  You guys are worth your weight in GOLD.

Linda

Linda brought up a salient point, running interference for sufferers.  I forget about it because it's second nature to me. 

Anywhere we go I look for "safe havens", cool, quiet, etc., just in case. 

I have the canned responses at the ready "no we don't need any help and thanks for offering . . .  no, we don't need an ambulance . . . . no, he's not having a stroke," etc. etc.  I know how far away the e-tank in the car is, and usually how full it is.

It's just second nature after all these years (and thank you Linda, for saying we're worth gold - that's very sweet). :-*

Linda_Howell wrote on Aug 27^th, 2010 at 6:30pm:

One other thing that supporters do is crucial:  When we are out in public...steering  us to the safety of the car or somewhere that no one will see us is more important than I can tell you.  Getting hit in public is one of our worst fears.  I've had the Police called on me and my husband totally took care of it.  I'd have married him for that reason alone.

I Couldn't Agree More!!

I had a stores employees asking their manager if they should call security on me during a hit. At the time I had no one with me to run interference so as quickly as I possibly could paid for my items holding my head the whole time and speed walked to my car where I'd left my imitrex.  I sat in the car after taking my shot tears streaming and rocking back and forth while passersby stared at me.  The looks we get from people are at times mortifying and only serve to deepen the embarrassment.

The other time was in a pharmacy but most have already seen/heard about that one.

In any case having someone to aid/protect/guard/guide you when out in public with a CH hit is always a kindness that most often one feels can never be repaid. 

Don't worry too much, when your CH'er needs you he/she will find you or make damn sure you find them.  Putting items that may be needed close to them is always helpful even if they don't need or use the items.  Seeing them there when the Hit is over lets them know you care and are there for them.

Thanks for all the suggestions people they have been noted and tested.

I have spoken to my boyfriend whilst not having an attack n think I/We have come to an understanding of when he needs me n when he wants to be alone.

You guys are amazing!!

Thankyou Snowfie xx ;D

Thank YOU for hanging in there! [smiley=hug.gif]

Joe

In my BF's case, every time is different.  Sometimes he wants me to rub his forehead or back, sometimes he wants to talk about the pain (he feels comfort in being able to express it), sometimes he wants to be alone.  We don't live together so some nights I get phone calls when he wants to talk about it, other nights he suffers alone.  Since I can never know what he needs in the moment, we talked about it when he was pain free.  I told him he could swear and give orders if he needed to, that it wouldn't hurt my feelings.  I told him he can come to me for comfort or walk away if he'd prefer.  Now if he gets hit when I'm around, I sit within earshot and pray silently.  If he needs me he'll call me or come to me, if he needs something I can get it.  Once he got a 10 when we were hosting poker night.  Keeping our guests comfortable and looking after him and his needs at the same time was difficult but crucial, and I know he thought I was an angel for handling it all.

If he isn't happy about swearing when in pain, explain how it has been shown in studies to reduce pain.

This was covered in a lot of news stories about a year ago, with an example being - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

The referenced article is:

Stephens, R., Atkins, J., Kingston, A. (2009). Swearing as a response to pain. NeuroReport. 20(12):1056-1060. DOI: 10.1097/WNR.0b013e32832e64b1