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Topic: How do I help him Understand? (Read 849 times) |
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clusternewbe
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How do I help him Understand?
« on: Oct 3rd, 2006, 9:07am » |
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My husband tries to be sympathetic when I have a cluster, but the other day I told him about this web site and he said "Are you serious, it's just a headache." He knew immediately what he said was wrong. I'm not trying to complain about my husband... I just want to know how ya'll explain these beasts, and the pain we feel, to the people you love most? I would really appreciate any input.
Thanks,
ASh
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Trond
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Re: How do I help him Understand?
« Reply #3 on: Oct 3rd, 2006, 10:36am » |
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I like this one as well:
http://en.wikipedia.org/wiki/Cluster_headache
And a short version my neuro wrote: (roughly translated from Norwegian):
"Invalidizing headache with extreme pain. Prophylactic's are mostly and regrettably of litle effect. Often nightly attacs which results in little sleep."
Or: Try waking youre boyfriend with a hammerblow the next time he falls asleep 
Trond
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BMoneeTheMoneeMan
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Re: How do I help him Understand?
« Reply #4 on: Oct 3rd, 2006, 10:37am » |
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Its a good thing he knew he made a mistake.
We WISH it was just a headache. This is the most severe natural pain known to humans.
They aren't just headaches that are commonly referred to as 'suicide headaches'.
PF wishes to you. Do you take meds or treatments for your clusters? What kinds of things have you tried?
BMonee
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Think of how stupid the average person is, and then realize half the population is stupider than that.
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Margi
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Re: How do I help him Understand?
« Reply #5 on: Oct 3rd, 2006, 10:42am » |
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on Oct 3rd, 2006, 10:36am, Trond wrote:I
Or: Try waking youre boyfriend with a hammerblow the next time he falls asleep
Trond |
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nice. 
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clusterwife
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Re: How do I help him Understand?
« Reply #6 on: Oct 3rd, 2006, 11:06am » |
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Explain to him that if he had his arm ripped off at the shoulder without pain meds, concentrate that amount of pain to the temple, eye, and jaw area for hours on end. To some of us supporters that would be hell, but to the sufferers, that's a "Kip 6 or 7"!
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BB
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Re: How do I help him Understand?
« Reply #7 on: Oct 3rd, 2006, 11:39am » |
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Poke him in the eye hard with your nail then tell him its just a gentle, loving poke, shouldnt be that painful really !
Kidding aside, drag him to the puter and show him the site or print out some good stuff and give it to him to read.
Take care and painfree wishes to you.
Annette
PS: If desperate, give us his mobile number and we will ALL ring him to tell him .... that should give him enough of a headache to start to understand ... 
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clusternewbe
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Re: How do I help him Understand?
« Reply #8 on: Oct 3rd, 2006, 12:01pm » |
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First of all... thank you for the laugh some of you guys gave me. When he made that comment i did feel like ripping off his arm, but we have enough dr. and hospital bills already!
Bmonee -
I have a rescue drug, I don't know the name because I am at work, and axert. I'm currently looking into oxygen. If you have any suggestions I am all ears.
BB -
You are so funny, thanks for making me smile.
I already printed out a sort of letter explaining the beast to friends and family from the OUCH website. I think it will help. Sometimes i just can not explain the pain i feel. It's like nothing else in the world. Thank you again for everything guys. You truly make me feel welcome here. PF wishes to you all.
ASh
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Linda_Howell
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Re: How do I help him Understand?
« Reply #9 on: Oct 3rd, 2006, 12:33pm » |
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At least to his credit, he knew that what he said was wrong immediately.
However, do you have any duct-tape in the house? Tell him you're gonna give him a neck rub, duct-tape him to the chair and push the PC under his nose.
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Re: How do I help him Understand?
« Reply #10 on: Oct 3rd, 2006, 12:39pm » |
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on Oct 3rd, 2006, 9:07am, clusternewbe wrote:| My husband tries to be sympathetic when I have a cluster, but the other day I told him about this web site and he said "Are you serious, it's just a headache." He knew immediately what he said was wrong. I'm not trying to complain about my husband... I just want to know how ya'll explain these beasts, and the pain we feel, to the people you love most? I would really appreciate any input. |
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I certainly don't think you're complaining about him...but I know it's frustrating. You would think that witnessing the pain of CH...explanations would not be necessary.
Yeah, it would be great if he would come here...he needs to read the Supporter's area of the board. But if he never does that, that's ok too. Most of the supporter's here have spent years with their sufferer...they've seen what the pain can do to a person.
CH is a bit of a learning experience...not just to the sufferer's....but the supporter's as well. Maybe in time, you're hubby will understand. It's evident from what you say that he cares...
All the best to you,
Jean
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Mattrf
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Re: How do I help him Understand?
« Reply #11 on: Oct 3rd, 2006, 1:54pm » |
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I feel for you, my wife does try very hard to understand what I am going through but only a suffer can truly understand the hell in witch we are forced to live.
You also tend worry about saying to much and sounding like you are whining and also not wanting to stress your partner out, it just goes on and on. I wish there was an easy way to make him understand the pain without removing any of his body parts but not sure there is one.
My wife does not come, here but when I first found this site she did poke around and read a bunch of the posts and it did help her to understand, I think it also scared the hell out of her at the same time and she refuses to come back or at least let me know she has come back, for all I know she is here and just keeping an eye on me to get a read on how I am truly doing since I tend to understate it as much as I can to spare her the pain of knowing how bad I really am. You really do need to get him to at least spend an hour or so reading here so he can get a feel for what you are going through.
I hope you get some PF time and I really hope he visits to get a glimpse of our hell so he can better support you. Him not understanding can be very damaging in the long run to your relationship so you need him to understand that this will help both of you in the long run.
Matt
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There is no stronger a person then one who can deal with brain pain and still function.
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Margi
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Re: How do I help him Understand?
« Reply #12 on: Oct 3rd, 2006, 2:30pm » |
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Respectfully, I have to disagree with some points raised in this thread. I would in no way ever attempt to belittle a cluster headache sufferer's pain.
However, please don't think for a second that spousal or parental supporters don't feel pain all our own and have citizenship papers to our own private hell. This has got to be the SINGLE most helpless job in the world. I was present when my daughter gave birth to my granddaughter and, honestly, that came close to feeling helpless but....nothing like what I go through when I see Mike withering away during a cluster cycle. It's like he's standing on the tracks with a freight train bearing down on him. 5 or 6 times a day. I am powerless to stop it or to help him.
So when I see folks say that you should hammer, eye poke, or inflict any kind of physical or emotional pain on a supporter - even though I know that posts that said this in this thread are kidding - I have a very real problem with that. It's honestly very rare to find a cluster supporter who DOESN'T get it. We don't have much choice BUT to get it, because it's the life WE lead too. We have front row tickets to a show we have no choice but to attend. Please don't group us in with outsiders who don't have a clue, ok? You'd be totally amazed at what a supporter SEES from this side of the fence.
The biggest gift you can give a new supporter is education and the comarderie of other supporters who've walked in their shoes. But please don't even joke about inflicting pain or ridicule their misunderstanding of what you go through. It's just not all that funny.
I know - I'm taking this WAY too seriously and that most of the comments were intended to be funny. This is just a pet peeve subject for me and I cringe to think of new sufferers finding this thread and thinking this is the way supporters are supposed to be treated. Maybe I've just campaigned too long here to give supporters a voice to ever be able to see the humour in this kind of thing.
Please. Print out the links for your husband, Ash, and give him time to understand what you're going through.
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| « Last Edit: Oct 3rd, 2006, 2:32pm by Margi » |
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Mattrf
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Re: How do I help him Understand?
« Reply #13 on: Oct 3rd, 2006, 2:44pm » |
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Margi I think you are right that it was meant in jest and god knows that our supporters are in a hell of there own and the words where merely a way of describing the actual pain everyone feels at times. Mike is a very lucky man to have such an understanding and educated supporter and the rest of us should be so lucky. I wish my wife would come here and get support for herself along with giving others support but she wont, I think she thinks she knows more then she wants to about this from the visit she did make and that was enough for her.
Tell Mike he is a very lucky man for me will you?
Matt
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There is no stronger a person then one who can deal with brain pain and still function.
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DonnaHar
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Re: How do I help him Understand?
« Reply #14 on: Oct 3rd, 2006, 3:18pm » |
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If ever there was a leader of supporters, Margi, it is without a doubt YOU! You have done so much for both sufferers and supporters with your care, concern and good judgement that without you, we would still be back in the 60's and 70's with sufferers not understood by anyone. Those were very hard years, not that now is a whole lot better, but at least here sufferers have supporters that are educated because of your effort.
I am a supporter for my son. I can tell when the beast is just about ready to knock on the door.....I see it in his eye before he even knows what's about to hit him. My heart just breaks knowing what he will suffer....in a world by himself that no one else can share...I wait just outside of his vision, wishing I could do something to take even a little of that horrible pain away....waiting for the tell-tale signs that it is coasting downhill and done for the time being. The other supporters on this site know exactly what I am talking about because we have shared our observations and have exchanged our different methods of coping.
This site has more information from more sufferers and supporters than you will ever find in one place. Do whatever you can to get your supporter to at least look around this site.
Maybe your supporter feels guilty about not being able to help you. Again, the Supporter section of this site will become invaluable to you both. Many feelings have been put up front and many have learned much from each other here.
I sincerely hope that you are not doing what I did when I was a young wife suffering clusters.......doing my utmost to hide it from my husband. He didn't understand...and he wouldn't tolerate "weakness"...so I'd sneak out of bed in the middle of the night and hide and he really had no idea of how bad it was. I'd hide in the bathroom or I'd go outside when I felt one coming on. But you know what? It was my own fault. I was such a sissy when it came to hearing him yell at me. If I'd have stuck up for myself, things would have been different. Just don't get caught in that trap. Let him know how bad it is.
Edited to correct some really stupid spelling mistakes. Actually, fingers just jumped beyond their boundaries.
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| « Last Edit: Oct 3rd, 2006, 3:36pm by DonnaHar » |
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Ghost
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Re: How do I help him Understand?
« Reply #15 on: Oct 3rd, 2006, 3:24pm » |
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I agree with those CHenz! Let him know and try to understand him too!
My wife is the same and It is difficult but if you care enough you will have understanding too! When he is there for you after getting thrashed by the beast give him a hug, and when he isnt do the same because I hate to say it he is there by staying out of the way sometimes.
Face it we aint nice when in battle!
Mike
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Trond
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Re: How do I help him Understand?
« Reply #16 on: Oct 3rd, 2006, 3:25pm » |
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Margi
I see youre point, and my comment was of course not ment to be offensive to anyone.
It is very good to be reminded of all you supporters out there.
Trond
ps: I will ask my wife to blow MY head with an hammer...who knows, it could be helpful for the HA as well
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Margi
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Re: How do I help him Understand?
« Reply #17 on: Oct 3rd, 2006, 3:27pm » |
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(I honestly wasn't fishing for compliments here, Donna and Matt - SO not at all.... but thank you both.  )
Donna makes an excellent point here, Ash. Mike hid this from me for the first little while, too, while we were still just dating and I think that's a pretty common instinct. Mike used to think he was going crazy and he didn't want to show that side of himself to me. But...being the bull in a china shop that I am, I kept digging at him until he finally let me see him in an attack. THAT was all the proof I needed, let me tell you. I am a migrainer. What I go through is NOTHING like his headaches - I knew right there and then that we were dealing with a very different beast. I honestly thought he was having an aneurysm and tried to call 911 for him. It scared the poop outta me! 
I don't know your story at all, but if you're like most clusterheads the visual of an attack is very powerful to a supporter. Listen to what Donna says here, ok?
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clusternewbe
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Re: How do I help him Understand?
« Reply #18 on: Oct 3rd, 2006, 3:33pm » |
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First I think ya'll should know that I had my cluster 2 months after Justin and I were married in 2005. I know he was scared and confused. We thought I was bleeding in my brain or that I had a tumor or something until all the tests came back negative. I know it was hard for him to witness his brand new wife beating her head and pacing like a mad women trying to find relieve somehow.
Margi - Please dont be upset with people trying to make me laugh. I would never hurt Justin. I would never wish the pain i had on someone else especially him. I'm glad your husband has you. You seem very caring and a great supporter for him. Thanks by the way for the info. LIke I stated before I printed some stuff of the web sites i was given and I am going to go through them with Justin tonight. I want to do this together with him. We both need to learn more.
Matt - thank you for your comments!
I asked Justin if he would search the this site with me and he agreed, so I guess this is the first step. Thanks guys for everything! And no hard feelings okay!
I hope you all have PF days ahead of you.
ASh
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clusternewbe
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Re: How do I help him Understand?
« Reply #19 on: Oct 3rd, 2006, 3:42pm » |
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Ps. I've only had one attack so far, and we had no idea what was happening so Justin has seen me with an attack, and I am not afraid to tell him about my pain. i am grateful that he is the first one to pick up my purse and rush me out the door if we are out and about and get me home to bed. I am truly lucky to have him... I just wish he would just understand the severity of the "headache" . Question - could it be that it has been so long since my last major cluster that he has forgot how much it affected me? I'm really serious about that question. Thanks.
ASh
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Tiannia
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Re: How do I help him Understand?
« Reply #20 on: Oct 3rd, 2006, 3:53pm » |
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Margi,
I think that we all know that supporters get it.
Ash - I totally understand. It still is hard for my husband when he sees me get hit. There have been times that I know that I have hurt him because he tries to help and I push him away and scream at him, because of the pain. He wants to protect me. That is his job, as he sees it. And he can not do anything to make it stop. So he got angry and told me that I was over reacting. That a headache could not be THAT bad. It hurts him that I hurt. There are times that I will let him "help" even thogh it does not help just so that he feels like he is doing something. Funny when you are in that much pain that I still dont want to cause my family more pain.
My husband still will not come to this site. It has been 3 and a half years since I got my first cluster. But I do my best to tell him what i learn here. And he is starting to listen.
If he will come here great. If he wiill just look at a post over your shoulder. At lrast it is a start. Try to explain it in terms that he can understand. If he has ever broke a bone. Tell him to picture that pain lasting for 2 hours strait without any ebbing of the pain and no meds. Then tell him ok now that you have had one. They will come speratically over the next 6 weeks, or how ever long your cycle is or if you are chronic, sometimes with warning sometimes without. And all you can do it try and life in between the hits.
And come here and vent. It helps.
PF Wishes to you, Ash
Tia
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Tiannia
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Re: How do I help him Understand?
« Reply #21 on: Oct 3rd, 2006, 3:55pm » |
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on Oct 3rd, 2006, 3:42pm, clusternewbe wrote: Question - could it be that it has been so long since my last major cluster that he has forgot how much it affected me? I'm really serious about that question. Thanks.
ASh |
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Yes. Because he was hoping somewhere in his mind and heart that they would not come back.
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Margi
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Re: How do I help him Understand?
« Reply #22 on: Oct 3rd, 2006, 3:56pm » |
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Good deal, Ash. I'm all for making folks laugh, trust me - hell, I make an ass of myself here on a regular basis, entirely for that purpose!
I just don't want folks like your Justin to think that the general concensus is that we treat new supporters with contempt here.
Tell Justin to check us out over at the Supporters section too, ok?
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Re: How do I help him Understand?
« Reply #23 on: Oct 3rd, 2006, 3:58pm » |
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Ash,
I copied and pasted this from the "Supporter's Corner here on the board.
This is CH from the supporter side....
IMHO....supporter's and sufferer's all...should read this, every single day.
Another kind of pain....
« on: Sep 17th, 2003, 2:02pm »
------------------------------------------------------------------------ --------
I'd like to start by telling you all what this post IS NOT. This is not a post or story that is meant to be self-serving. It's not a post about who suffers more or who's pain is the more hurtful. It's not a "complain" post or a "whine" post. It's a post about what if feels like to be me.....the wife of a chronic clusterhead who I love with all my heart. It's a post about what it feels like to be me when I read so many of the sufferers posts because I have seen with my own eyes the pain they are talking about.
Clusters hurt supporters hearts.......
I've watched Blake reeling in pain for endless hours. I've heard him beg God to kill him. When God doesn't he's begged me. That's heart pain.
I've seen Blake (some mornings) looking like he just walked out of a concentration camp.....eyes sunken in, no color, no facial expression. I ask him if he'd like a cup of coffee and say 'you better hurry up, honey, or you'll be late for work'. What I'm thinking is how can this man make it another day...how can he go to work. But...I know I have to make him try. I know I can't let him give up. That's heart pain.
At different times I've asked the doctors to change Blake's drugs. I've done this more than once and it's usually when he's in "high cycle". My theory is we have to keep trying...we have to keep looking. One time when we changed drugs it made it much worse. Right in the middle of a Kip10 he's begging me to please never try another drug...please never ask him to do this again. That's heart pain.
I've intentionally made Blake mad when I feel he's about to give up. I've pissed him off just to get his blood flowing and get the heart rate up. It works but it just about does me in when all I really want to do is hold him and cry. That's heart pain.
Clusters hurt supporters egos......
I'm a bit of a contol freak. I like to take charge and fix things up. I like to make things better for friends, family and loved ones. But you know what.....there's not a damn thing I can do to stop the pain when the demon hits. I can't threaten him, scare him away, bust his balls or buy him off. I have to accept that I can't make it all OK for Blake until the demon lets me. I have to stand by in a helpless state. That's ego pain.
There's one more pain and it's called guilt.......Blake and I are husband and wife. We are soul mates. We are best friends. We are supposed to share everything....the good things and the bad....the tears and the laughter....the pain and the "feel good" times.
I have begged God to put the demon on me....to give Blake a break....to leave him alone for just one week. But.....it never happens. Blake has to endure all the hits and that's not right. That's guilt pain.
Well.....that's about it I've run my mouth again as usual.
Love to you all....suffers and supports alike
Jackie
LOL...one more thing. My theory is never let 'em see ya cry, never let 'em see ya sweat, never let them see any doubt on your face.....hang tough and they'll hang tough with ya......fight the demon with them and they won't give up......tell them that tomorrow will be better and they'll try it another day.
This is the kind of support that comes from love...
I am thankful...every day for the supporter's
Jean
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Margi
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Re: How do I help him Understand?
« Reply #24 on: Oct 3rd, 2006, 4:06pm » |
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Jackie is my all time hero - top of the heap of supporters here, in my opinion. I love that post.
Ash, I was just reading your introductory post....your first "cycle" was two weeks long, right? You said that it seemed like one long continual pain and that it started above your eye but ended up in your neck? Did you honestly not have ANY pain free time in that two weeks? I'm just a little concerned about your diagnosis. Cluster attacks are very defined and ramp up on the pain scale quite quickly but do go to zero pain after an average of an hour. Some folks have shadows that remain but they can function through them - attacks, not at all. Is that not what happened for you in that first cycle? I know you're young and that, if this is cluster, they can be quite irregular at first. But cluster attacks don't last for two full weeks though. It just worries me that maybe your doctor hasn't dug deep enough for you yet. Have you had any attacks again yet, or are you just feeling that it's coming on again?
Sorry, not trying to change the subject here and certainly not trying to be confrontational at all...just trying to understand.
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