Hi everybody- I am new to this board- although I have been a visitor of the site before.

I never felt compelled to write, but I need some advice. My fiance has been cluster free for 3 years, and we have been together almost three so I was not around when he had his last attack.  

Well, as of late he has been getting attacks and I do not know what to do.  I feel as though if I do nothing I am bad, and if I try and help I get yelled at. I know that the yelling is because of the pain but I still do not know what to do. Usually when he wakes up with an attack, I leave him alone, but I feel like the most horrible person ever. I just try and go back to bed because I know whatever I do will not help and I will just be in the way.

And tonight, I had no idea he was hurting(he told me he felt an attack during the day but that it was better) so bad and he got mad at me for not realizing he was in pain. I am at a loss and feel helpless!! What do I do??? If I could give any amount of relief i would!

I honestly feel like I am damned if I do, damned if I dont (in dealing with his attacks) I just want to help and be supportive. I love him with all my heart and it is breaking!!!

Thank you so much to all of you. I would appreciate all the advice I can get.

Basically, I am lost :(

Thanks!

Hi Lindsay.

Its a natural reaction you have but remember that sometimes an individual must battle their own demons in no way are you at fault for trying.

Hang in there.
A funny thing about clusterheads. We think that since the pain is so intense that surely others can see it same as we feel it. I know its not so.

Its pretty hard to know when someones getting hit.
Tell him your concerns and to quit being a dufus about something that you have had no part in causing. Have him tell you what he wants when hes not being hit.  Many of us can be a bit ornery at times.

Perhaps you could have him develop some sort of signal so you can know an attack is in progress. In time you may just know.

Heres a thread from a few years back that may help

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Hi Lindsay,

Lots of us prefer to be left alone when we're being hit.  I'm a "hider" myself, so I understand. (Obsessively so--I don't want ANYONE to see me.  If I could pull the earth over my head, I'd do it.  My wife of 33 years has seen me get hit more than once, but she knows to leave me alone to deal with it.  My daughter's almost eighteen, and she's NEVER seen me get hit.)

Sounds as if your fiance is cut from the same cloth.  

Don't feel bad about it, and don't worry that you're not "doing the right thing".  We all have our ways of dealing with it--some need others around, others just need to be alone to fight it to a draw.  You'll both come to whatever you need to do, given time.  

Go to:

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...and talk to some of the good folks there.  I'm sure they'll be able to give you good advice and insight.

Hang in there, kiddo.  You both can get through this.

All the best,

George

Thanks so much! It really means a lot to have someone to talk to. I know we will get through this- I am going to talk to him when he gets home about what he would like me to do when they start, etc.  Thanks again for the support!

If worse comes to worse, tell him, "I can't know what I don't know. Therefore, you have to tell me."

You could make some suggestions, too. Offer to get an ice pack from the freezer, or open him an energy drink, or get the oxygen ready. And be prepared to be told that you can't do anything. If that's the case, don't do anything. Go back to what you were doing (including sleeping).

But the whole getting upset over you not being able to sense that he was in pain - that's for the birds. Say, "I do a number of things very well, but reading minds isn't one of them."

OMG Lindsay, I know how you feel sweety. My husband has had CH for four years now and it's horrible. I can tell you that they do not know what they are saying or doing during one of these attacks so please don't take anything personally b/c he certainly doesn't mean it. Bobby's entire face change, sometimes his voice but everytime his left eye becomes horribly red and begins to droop so sometimes I know he's about to have one before him if you can believe that.  You must try to keep his stress level down as much as possible, make sure he's wearing his sunglasses at all times when the sun is out, make sure you have plenty of tissues and patience and you guys will get thru this.  My best advice is to speak with him when he's not having an episode and see what he wants you to do. If there is anything we can do for you please let us know.

Brooke

Might I suggest that the sufferer should make an honest attempt to put themselves in the supporter's shoes for a minute. Try to imagine what it's like to see someone you love going through this. Then do what you can to try to make it not so horrible. It's unforgivable to me to take it out on the ones you love.

And BTW, photosensitivity is not a common characteristic of CH. It can be, but it's not common. I've never had bright light trigger a hit, and there are lots more of us for whom it is a non-issue.

blawrence wrote on Jul 9^th, 2008 at 7:18pm:

sometimes I know he's about to have one before him if you can believe that.

This is VERY common for those that have gone through these together for a while.  My ex-wife could ALWAYS tell when I was going to get hit, BEFORE I did!  To this day, she can still tell.

What I find TRULY amazing, is when I am on the phone to one of these other clusterheads, they can tell when I am about to get hit ... ON THE PHONE!!!  That blows my mind!

But, the best advise I can give is to re-iterate what the others have said:  When he is NOT getting hit, and is totally pain free, sit down and discuss what he wants you to do, or not to do.

The two of you can work this out, but like everything else in a relationship, it takes communications, during stress (or pain) free moments.

Good luck!

Chuck

Quote:

What I find TRULY amazing, is when I am on the phone to one of these other clusterheads, they can tell when I am about to get hit ... ON THE PHONE!!!  That blows my mind!

I can't.

Not since you stopped taking my calls. ;)

I'm brew's supporter and in all fairness, I'm oblivious to an impending hit.

One minute I look at him and he's fine and the next he's racing for the oxygen.

I know when he's in cycle, but that's the extent of it.

I'm either a bad supporter (and I know I'm not cuz I have the OUCH certificate from last year to prove it  :P) or he doesn't give off signals.   I choose the latter.

You two have to talk about this issue. Make a plan, he gets hit, you do this and that. Agree on it. He does need help, he may not know it.
 My wife can tell when I am going to be hit almost as fast as I can. She knows what to do and when by now. Only because we have discussed it many times prior. Never when its happening. In his defense this is acute critical pain, you dont want to talk, explain or request anything. Usually I am speaking in tongue's and request's are grunted in one word, between gasp's for air. ;)
Next time quietly put on the coffee, grab a cold rag, drag him to the 02 or whatever you have agreed on. Then get the hell out of the way.
Or whatever you have agreed on. Good supporters are needed and wanted, despite our mixed signals.
all the best, and do hang tough...YOU ROCK
thebb :)

Lindsay,

I suggest also that when your fiance is having a pain-free moment, you two will discuss what he needs during an attack - does he want to left alone, does he want you to stay in the room, does he need you to bring something... etc. And in case you will begin a conversation just as the devil coming, a some kind of sign, so you will know that ok, he's getting hit, and let him be.

I'm one of those "leave-me-alone" - types, so when I'm getting hit, I run to get energy drink asap and deal with it on my own and my best supporter knows that I prefer to be alone for a while. But we're all different, so that's why it's good that you two will talk and find out what he needs.

Wishing you the best & PF days to your fiance,
Sanna

Hi Lindsay!
I wanted to let you know that my situation is very similar to yours. I have been with my boyfriend now for over three years, since March of 05. In August of 06, three months after we bought our home together, he got an episode that lasted about 5 weeks. He was cluster free for about two years and then about a week ago, it the hell started all over again. This time they are not coming every day, thank god, but when they do, they seem to be lasting longer, three hours is the current record. In fact, tonight we just returned home from the ER where we waitied about 40 minutes only to have the beast retreat before being seen by anyone. It is so amazing to me how you can be in an ER with a grown man crawling on the floor and screaming to die and have no one give him anything. I am going through what you are going through. You could ask him what he would like from you when he has an episode. For Matt, I just ask him if he needs anything and then let him know that he is doing great and it will be over soon. Then i shut the door and hop on the internet. I at first would stay with him but this was just too uncomfortable for both he and I. He does not like to be touched at all so I just leave the room. I hope that you guys communicate about what he needs from you. Dont take it personally when he gets mad because it is the pain talking and not him. Take care and hang in there. I hope the pain is over for your fiance soon.
Krista :(

Hi Lindsay

My wife knows when im about to get hit even befor i do because i go in to my self and quiet that usually happens about 30 mins befor the shadows start then the attack hits with in the next hour

I personly like to have her there usually shes just asleep but it still helps, if she is awake i just squeeze her hand and she just sits there if she starts trying to touch me i get angry talking to eachother solved that one we have a plan and we stick to it

your partner does not meen anything he says its just the intence pain i can only agree with everyone else talk to him but do make sure hes pain free at the time .

we are not easy to live with us CHers and you guys do a wonderful job keep up the good work i have much love for all suppoters you guys keep us alive and kicking

Regards
Brian

Lindsay,

As one other poster put it, i'm a hider.  I usually go to my bedroom, turn off the lights and just try to find soothing positions with an icepack even if a position is for 10 seconds of relief.  Yes, I don't have O2 yet, but i'm working on it.  I tell my wife as a cycle starts that I love her for understanding and bare with me, remission will come again.  Her "understanding" alone has helped me along.  Her best way of helping me is leaving me alone.  I would never say anything for not helping me and she knows that.  I would imagine that some get really agitated after an attack and take it out on others between hits.  I wouldn't take it personally because your fiance is probably going through some anxiety after the attack.  You should get him to speak on this site so he can see how we deal with it with other family members.  We understand that others don't know how it feels, but support is the biggest help.  You're an amazing person for being there for him.

 

hello lindsay-

i have had CH's since i was 14 in 1992 and had family around to sooth my attacks. later... after my worst cycle ever ended (1.5 months), in the fall of 2004 i met my husband to be.  i told him about them, but what you hear is different then what you see.  since then i had one 2 week cycle that never amounted to much and, of course, my husband was serving in the US Coast Guard and wasn't home.

now, its been 5 weeks, he has been gone again quite a bit.  but i like to hold his hand, squeeze it with all my might, rock into him when he is home. i don't like him to touch me though, really sensitive.  

if they are not that bad, i will rock myself, not to wake him.  but if they are bad, i will wake him and he will help me make a decision.

my hubby will be home soon and he can't wait to get on this site and meet other people like you lindsay.  people he can talk to.  you, my husband and all the other supporters are the reason that we CHer's keep our head up and looking forward to another day, even though we know what usually happens...

angela

Lindsay,

My hubby would like to be a hider.  He prefers to keep to our basement and live in the dark quiet.  He really prefers not to go out at all because he feels he will make everyone else feel bad because he is sick.  If he had his way, not even our kids would see him in pain.  It's just the way some people deal best with the pain.  He also doesn't want to "bring people down" because he is sick and can't be his normal self.  Doesn't want to be a bother or a "downer", his words.  Hope this helps you understand your fiance.  And, since you originally posted in July, I truly hope this CH episode has passed.  

Hang in there!

Hugs!
AElf

Thanks so much everyone for all of your responses! Sorry I have been MIA for a while-

My fiance has had a rough few months- since Christmas the attacks have been pretty bad. About 3 weeks ago he had some of the worst cluster headaches he's had in years! I literally sat on the bed with him as he cried while they attacked during a few of them!

I am happy to report that he is confident they are on their way out- although he gets little flutters now and then and still a few very bad ones. The last two days have been pretty good- so we are both happy about that.

Since my last post we have talked a lot about what I should do when the ch's attack.  It really helped. My fiance has also apologized for the way he acts during them- but he's in so much pain I know that when he gets angry its not really "him" thats talking.  I know I get angry too- not at him but the fact that I feel so helpless to help him if that makes any sense.

I just want to thank you all so much for the kind words! I hope the cycle is near the end and I promise not to be a stranger on here anymore! :)

Thanks again everyone.

Glad things are looking up for you all.  :)

Pat yourselves on the back.  It's a tough ride and you're just about to the end.

Jackie

I hope you have at least three more years before the beast returns.  Better yet, a lifetime!

A lifetime remission would be awesome. Thanks for being the golden supporter you are.

Joe

Sounds like things are going well.  

I hope they are on their way out and lose your address on the way.

This thread made me smile. It's like a little bit of hope to hear someone coming out of a cycle. It reminds me that mine too shall pass. I absolutely hate being alone at anytime in my cycle, but i have to. I smile when the kids come home from school and when my husband comes home from work. He keeps fresh cold rags on hand during my hit and he asks if i'm ok...i'll usually ignore him until it lets up and then tell him i'm getting better. When the hit is over i reach for his hand. You know when someone truely loves you when they still see the beauty in your pale face, messed up hair, dark eyes...etc. You supporters are the reason most of us hang in there and fight. :)