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        Supporter's Corner >> Supporter's Corner >> newbie question
        
(Message started by: ginc on Nov 1^st, 2005, 9:47pm)

Title: newbie question
Post by ginc on Nov 1^st, 2005, 9:47pm

i am in a fairly new relationship.... my partner's clusters (3-4 per day ..going on the 4th week now) have resurfaced with a vengeance after almost 20 yrs of no headaches... i have never been exposed to anyone with this type of horrible pain... and obviously its not the time to ask him a lot of stuff.... is it normal for the sufferer to completely close himself off from those who are trying to be supportive??

Title: Re: newbie question
Post by mrs mac on Nov 1^st, 2005, 9:54pm

yes it is, please don't take it personally, he will talk about it when he is ready!!!! have a read at these

http://www.clusterheadaches.ca/DesktopDefault.aspx?tabid=100

http://www.clusterheadaches.ca/DesktopDefault.aspx?tabid=103

hope these help to explain things a bit for you

take care

you are not alone, we are all here to help you as well

sandra xxxx

Title: Re: newbie question
Post by Woobie on Nov 1^st, 2005, 10:07pm

on 11/01/05 at 21:47:01, ginc wrote:

is it normal for the sufferer to completely close himself off from those who are trying to be supportive??

Unfortunately - yes. And we all know what THAT'S like.

They dont like to be touched while they're getting hit.. and most prefer to be alone. Try to respect that.
..... it's hard, but necessary. It's not personal.

Welcome - you'll like it here.

Tina :-*

Title: Re: newbie question
Post by jon019 on Nov 1^st, 2005, 10:15pm

Dear ginc,

It is such a helpless feeling. it makes a person feel so all alone. The agony literally changes your life. To subject someone else to that (let alone someone you love) makes it cruel beyond belief.

I speak for myself. No-one should see that, no-one should suffer this. Just be there, give him what he will allow, but give him space. It's a lonely, lonely feeling
(for both of you). Thanks for coming here, thanks for being there.

Go with your gut, go with your heart. You are a guardian angel.

Regards and prayers,

Jon019

Title: Re: newbie question
Post by zanychef on Nov 2^nd, 2005, 3:39am

i'm afraid to say we do :'(
personally i hate having anyone see me getting hit including my partner :'(
fortunately she understands ;;D

Title: Re: newbie question
Post by ginc on Nov 2^nd, 2005, 8:33am

thank you all for your replies... helps a lot...
i am trying to just give him his space and wait patiently..
very tough tho to not take it as a personal rejection..
am so glad i found this site..

Title: Re: newbie question
Post by Woobie on Nov 2^nd, 2005, 9:23am

Women, by nature, want to "mother" their kids and their spouses. It's natural. So, we take it personal when we're pushed away. We all had to learn to back off..

Having a cluster is a very personal demon.
All you can do, is be there for him when it's over, and when he's ready. That's all. Ask him when he's not having one - what to do, and then do it. All he may say is " let me be". And that's the hardest thing of all.

If he hasn't had them in 20 years, this is probably devastating to him.... and it scares the shit out of him, he's dealing with that, too.

Know what you're feeling, and sorry. I hope you can stick by him......... and love him anyway. Many people have lost relationships because of this cluster beast. You have to be just as strong as him.

good luck! we all know what you're going through... feel free to stick around.

tina :-*

Title: Re: newbie question
Post by Margi on Nov 2^nd, 2005, 9:30am

if he's had a 20 year remission, please urge him to get checked by a doctor. This might not be cluster and he may need to get an MRI or a CT Scan to make sure something else isn't going on, ok? I don't mean to scare you but that's really not often reported in clusterheads, that long a break. Just to be on the safe side, I'd sure be pushing him to find out why after this long his pain has come back.
Tell us about him....what meds is he on? How does he abort the pain? If it is cluster, make sure he tries oxygen as an abortive. Oxygen really can give a cluster family their life back.
Hang in there, friend - pain of any kind really affects everyone's quality of life, both sufferer and supporter.

Title: Re: newbie question
Post by ginc on Nov 2^nd, 2005, 11:18pm

thanks again for all the encouragement and info...

he is doing the oxygen and a cold saline spray.... and trying melatonin...
the dr (neuroligist) put him on ergotamine... which he said makes them less severe but longer with each hit... if all that wasnt bad enough.. the ergotamine has had a nasty little side effect.. rendering him impotent...

basically he has totally pushed me away... and gone into a state of noncommunication... since we dont live together... that leaves me with basically nothing to but wait patiently... have let him know i will lbe waiting with open arms and heart when he is ready..

Title: Re: newbie question
Post by jon019 on Nov 3^rd, 2005, 1:12am

Yikes!

For what its worth I will comment on my experience.

Cold saline spray? My allergist recommended this for hay fever. For CH? maybe MINOR relief of one symptom
but it aint gonna cut it for the rest. Blowing copious amounts of snot can be distracting, but you always wonder what else is gonna come out.

Ergotamine? Well, those with more experience should comment. It is a powerful vasoconstrictor and that could
affect "other" areas. I never had the problem described. There are others to try, dang, he should try them.

If it's Cafergot, tell him to flush it! They look like M&M's with the coating sucked off. They take 20 minutes to START working (way too long). maybe appropriate for migraine but not for CH unless you know EXACTLY when to expect a hit. I used to chew 'em and they are hard as rocks, it's called desperation.

Ergotamine tartrate (ergostat)? Sublingual (under the tongue) tabs that have got to be the worst taste known to man. Only a clusterhead would subject himself(herself) to that! GAAAAAAACK. Besides, they were minimally effective.

DHE injections? Don't know, never been there.
Can't imagine they would be used for more than abortive, but...

Other forms? Don't know. Stuff didn't work for me so i moved on.

Has he been to this site? There is no med, no doctor, no nothing that will do as much for him as this site and these people can and will do for him. He can continue to cry alone in pain (as many of us have done or still do) or he can cry with relief and joy (as I still do) at finding people who know and understand AND HAVE OPTIONS.
Get him here!!!!!!

Every day I visit this site I am humbled by the wisdom and compassion I find here, and buoyed buy the humor.
I have no more answers than anyone else, but 24 years of the beast means i have experiences that might be helpful to someone else. PM me, PM someone else here. Have yet to receive anything less than gold from any PM I've ever sent.

Prayers and hopes for a normal life for you and your guy,

Jon019

Title: Re: newbie question
Post by Margi on Nov 3^rd, 2005, 11:13am

Jon, quite a few clusterheads have found relief with Cafergot and DHE. Please be careful telling someone to throw something away that HAS been known to help, ok?

Ginc, you will just have to be patient. You and I can't fathom the pain these folks endure. I'm sure intimacy is pretty low on his list of priorities right about now.

Title: Re: newbie question
Post by jon019 on Nov 3^rd, 2005, 11:53am

Got it Margi. You are absolutely right. I SHOULD know better by now.

I will write 100 times:

just because it didn't work for you doesn't mean it won't work for someone else...

Jon019

Title: Re: newbie question
Post by Margi on Nov 3^rd, 2005, 11:59am

cool, Jon -thanks. ;)

We're the same - my hubby's tried what has said to be the magic cure all (many different things) and...he ends up feeling that the cure all in question is crap. But it isn't crap for everyone.

Title: Re: newbie question
Post by Lietuvos on Jan 30^th, 2006, 8:11pm

I cannot speak for your partner,but , when i get a CH i just want to be left alone for two reasons:

1. I know there is nothing you can do.

2. I don't want to say or do something I will regret.

When your partner is not in cycle, I'm sure he will answer any questions you have, until then read all you can about CH and understand....CH is a demon...It may not be your partner talking, it may be the demon.

Title: Re: newbie question
Post by SweetMelissa on May 5^th, 2006, 12:10am

hello Ginc,

Yes it is true that they do close themselves off to you, even if you are trying to help. But do not take it personally it's not YOU.
I am married to a CH suffer and have watched for 5 years now the suffering and it's no easier now then it was then. He can still turn himself off to me and I just have to leave him alone.
Just let him know your there and be supportive, that's what he needs. Don't like it upset you if he won't talk or anything. It's ok

Melissa

Title: Re: newbie question
Post by Garys_Girl on May 6^th, 2006, 1:59pm

Ginc,

I haven't been around on this board that long, and I don't know too many people here. But from what I've read, it seems most are married (it seems that by the time anyone reaches a proper diagnosis they're "older" already), in some kind of committed relationship, or are CH sufferers as opposed to supporters.

Yes, it is natural for CH sufferers to want to be left alone during hits. It is natural for them to withdraw when they're in cycle.

And I agree with Margi - since it's been so long since he was in cycle, it would be prudent to make sure it isn't something else.

But it seems to me that you're facing another problem: the meds he's on are causing impotence. In a new relationship, that's got to be a hell of an issue for a guy to deal with. It doesn't matter how understanding you are, how OK you are with it - I would think that from an ego perspective, it's a really difficult obstacle to overcome.

There are many other medications he can try, if his health permits it. Many clusterheads use a prednisone taper with verapamil. It seems that's the place most neurologists start. But for sure check out this link:

http://www.brightok.net/~mnjday/chtherapy.pdf

And I'd really encourage him to visit this site. My husband ghost surfed the site for a while, and just knowing it's here, knowing there are others, and knowing there's so much information - and that there ARE alternatives - especially because "treatment" or what works to help alleviate the problem IS such an individual thing, really helped.

And if you don't hear from him for a while because he's in withdrawal mode, write him - a letter, an e-mail - something. Something to let him know you're still there for him as someone who cares.

Just my 2 cents.

Laurie