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        Supporter's Corner >> Supporter's Corner >> Can i get some help?
        
(Message started by: Casper120 on May 20^th, 2006, 10:55am)

Title: Can i get some help?
Post by Casper120 on May 20^th, 2006, 10:55am

I am writing this to ask for some insite/help on what i can do for my wife. Today is actually our 4 month wedding anniversary and she has come down with her cluster headaches for the first time since we have been together. I have asked her what i can do and she said just to be there for her. I feel so helpless not being able to do anything to take the pain away, it kills me to see the pain she is going through i myself deal with migranes but those seem like a walk in the park compared to what she is going through. If there is anything that i can do can someone PLEASE give me some suggestions, i hate seeing her having to go through this. Thank you in advance.

Eric

Title: Re: Can i get some help?
Post by nani on May 20^th, 2006, 11:18am

Hi Eric. Welcome and Happy (?) Anniversary. Thank you for wanting to be there to help your wife. We all appreciate good supporters. :)
If she just wants you to be there for her, then that's what you should do. We are all different, so I can't say that what I may want would be what she wants. Most of us prefer to be alone during an attack, please don't take that personally. What kind of treatments or meds is she using? I use ice a lot, so my supporters always make sure my ice packs are in the freezer, in easy reach. My hubby checks the O2 tank to be sure it's full, my kids will get my ice pack and walk away... it's a routine we've learned over the years. Ask her if she'd like something specific from you and do that. If not, just knowing that you're there for her when it's over may be all she really wants. Have her come here, too. There is all the support and info you both need.
pain free wishes to your home, nani

Title: Re: Can i get some help?
Post by E-Double on May 20^th, 2006, 1:45pm

Hi Eric,

Whatever she wants, do for her.
Try to have a plan of action ahead of time with signals instead of too many words because sometimes in the heat of what we call "battle" we might be quip or even harsh to our loved ones.

Also make sure that you take care of yourself because it is mentally draining on you.

Be well and thanks for doing what you do!!!

Eric (I was here first ;))

Title: Re: Can i get some help?
Post by Casper120 on May 20^th, 2006, 1:47pm

Question?? Could someone explain what a shadow is my wife just complained of having a shadow, i couldn't find anything on here that goes into depth on what a shadow is.

thanks
Eric

Title: Re: Can i get some help?
Post by Redd715 on May 20^th, 2006, 3:45pm

on 05/20/06 at 13:47:05, Casper120 wrote:

Question?? Could someone explain what a shadow is my wife just complained of having a shadow, i couldn't find anything on here that goes into depth on what a shadow is.

thanks
Eric

Shadows..for some of us, (not all folks get shadows) they are very low level pain that occures as a warning a full blown attack is imminent. Some get shadows that last all day, but the pain level doesn't ramp up...it sort of just hangs there..."like a heavy black cloud or [shadow]" Somewhere I read someone make an annalogy that it's like a running car, and someone keeps revving up the engine a bit while it's sitting in park.

Hope this helps.

Title: Re: Can i get some help?
Post by Casper120 on May 20^th, 2006, 5:39pm

yes that helps ALOT, now at least i have some type of warning that one might be coming on.

Title: Re: Can i get some help?
Post by The mad viking on May 21^st, 2006, 2:15am

Hi there

As your wife said,"Just be there for me"You can do much more then that im sorry to say

Perhaps a cold wet towel around her neck and or/on her forhead if she is comfortable with that

Main thing is just to be there for her as she said,this will pass.

I know there has to be a really frustraded situation for you.

I have said many times i dont know who suffer most "we the clusterheads or our love ones that can just standing there and do nothing"

Main thing for you 2 is to sit down and talk about it when she is ready for it.Let her tell you exactly what she want,so you at least get the feeling that you can help her.

We the sufferer has this tendenses to forget our supporters and that they hurt almost just as bad as us

The best from Svenn

Title: Re: Can i get some help?
Post by Linda_Howell on May 21^st, 2006, 1:24pm

Eric, I can understand the frustration you feel in having to sit around and do nothing. "Just being there" probably doesn't sound like a lot, but it is.

A lot of us find caffeine which helps to constrict the blood vessels helps a lot so you can make a pot of strong coffee, get it to the temperature that she can gulp it and bring it to her. Making sure her 02 tank is full and ready and also the cold packs are ready is a good idea.

One more thing you can do and this is very important to me personally....is to have someone who will "cover" for me when we are out in public. Getting hit in front of someone is a hell of a scary idea to us...If she gives you the look like she's getting hit, you can wisk her off somewhere private, or make her excuses for her or whatever is necessary for the moment.

Linda

Title: Re: Can i get some help?
Post by Garys_Girl on May 21^st, 2006, 5:20pm

All of the above is great advice. The most important thing is to sit down and discuss with her (when she's not having an attack) how you can be of any help when she feels one coming on (if she has any warning). Ask any questions you have. Tell her how you feel.

Hubby didn't really get how awful it is to be in a position to do nothing until I asked him "what if the situation were reversed? What if I was the one experiencing excruciating pain and all you could do is leave me alone?" Thinking about it that way, he came up with all kinds of things I can do.

Get the Cold towel (freezer packs for many) when he points and grunts. Help get the O2 mask on and the tank turned on. Turn the TV on, put in a sitcom DVD so he's got a distraction. Call and cancel any appointments or make excuses to cover the next hour. Or more if need be. Run downstairs and make a double expresso the way he likes it. Put it within reach and make sure he knows it's there by touching his arm and pointing.

That's pretty much it - unless he wants his eye/sinus area massaged, which he does want sometimes. Sometimes it's the back of his head, or the area around his ear. He doesn't like to be alone (unusual), but likes me to sit with him. If there's nothing further for me to do, I just watch whatever I stuck on TV for him, and I try to ignore the rolling, writhing, moaning or banging himself on the head with the clicker.

Other than that, I spent lots of time on this site figuring out things to try that may help.

As a result, he's on a regimine of Kudzu, melatonin, magnesium, calcium, and Taurine, all of which seem to have helped the number of incidents, the length of incidents, and the intensity of incidents - in addition to helping him get a little sleep here and there.

Hubby has constant shadows, and is never without pain. This is his first defined cycle (has had them for years, but never like this, and never previously diagnosed). He hasn't been pain free at all since March 4th.

He has constant shadows, which he explains as like having a constant nagging headache that moves between a pain level of 1 and 3 (on a scale of 10, described in this site as the "Kip Scale," for which there is a button on the left).

He can tell a hit is coming on when he starts to feel sinus pain. At that point I can usually see his eye droop. Then it starts to tear, and he begins to sweat profusely. The side of the clusters (his right), heats up like his forehead could spark a fire.

I try to ignore his irritability, his temper. I do my best not to take it personally. He is completely sleep deprived, stretched to the limit, and in constant pain. Normally he's the sweetest man in the world, so I do my best not to "fight back" when he's bitching about something that would normally never been an issue.

And he does always apologize for whatever it was later. He's just not "himself" when things are like this. Who could be?

Most importantly - read, read, read!

Wishing your wife pain free days and nights,

Laurie

Title: Re: Can i get some help?
Post by Linda_Howell on May 21^st, 2006, 5:51pm

One more thing I'd like to add Casper?

Your wife is a lucky woman to have a guy like you.

If we all could.... we would not only give you a pat on the back but a huge hug too. [smiley=hug.gif]

Linda

Title: Re: Can i get some help?
Post by QnHeartMM on May 27^th, 2006, 5:07pm

I guess the only thing I would add is that I try to drop shades and such when my husband is suffering, like maybe the blocking of light will help. I know he doesn't want to be touched then, or spoken to. I silence the ringer on the phone if he's having a bad one.

The only other thing is to work with the doctor to figure out ways to keep them from coming - lithium or whatever. And then of course as some one else said, keep the o2 bottles handy. And check into Imitrix.

One of the best things I ever did was get upset about all the different medicines and the lack of my understanding of the combinations. I met with the doctor and he took the time to explain why all these various things taken together were ok. Maybe that will help.

Q.

Title: Re: Can i get some help?
Post by kevinpix on Jul 20^th, 2006, 7:03pm

i'm a male, 36, in remission from chronic clusters. i had trigenial noralsia surgery last year with excellent results! i was on 17 pillst to no avail. I'm numb on my left side. I'm pill free, 99 percent pain free, and back to enjoying life again. My headache dr. is Dr. Mathew in Houston's headache clinic off of Benz. He referred me to Dr.Hurt for my surgery. He has excellent bedside manner. He is Godly love in his performance!! I'd like to share more, so write back with any questions. see ya soon! kevin.

Title: Re: Can i get some help?
Post by tedski on Jul 20^th, 2006, 9:19pm

What can I say that hasn't already been said "Nothing" but I will add that I hope and pray she is pain free today and out of cycle again.

Happy 1/2 year anniversary. :D [smiley=laugh.gif] :)

My wife has been Chronic for over 5 years now and it doesn't get easier and you don't get use to it. Just learn how to help in the small ways you can because when she is under attack even the small things make a big difference.

PFD&N

Title: Re: Can i get some help?
Post by Mosaicwench on Jul 21^st, 2006, 10:29pm

Hi new Eric.

I'm a newbie here like you, but I'm not new to the beast (that's a common name for this thing that attacks our loved ones). My DH has had them for 15 years and has been chronic for about 18 months(mutliple dailys with regular shadows).

The advice here is stellar - they know of what they speak.

It's painful for us to watch and cover and feel useless but it's what we do - we pick up where they left off when they are hit. We provide what we can and just stay the hell out of the way if that's what they want.

We educate ourselves and those around us so our loved one doesn't have to defend themselves against people who think they are crazy, or faking it, or know-it-alls who think a cluster headache is "just like my migraine and why don't you try . . . "

We are not really useless (although it sure feels like it sometimes) - just being there in word and deed is enough.

Oh one more thing; marriages CAN survive this beast. We are celebrating 24 years together this year (15 of them have been with cluster headaches). We took the vows of "for better or for worse" and "in sickness and in health" very seriously . . . and we're being tested everyday.

Wishing you and yours painfree days ahead.