Hi my name is Ppattya, and I am a ch'er not a supporter.  My loving husband is my dearest supporter. It's had for me to do this because I don't know is that is the right thing to do. From the bottom of my heart I ask any and all..  My husband, and I, are losing friends because they do not understand ch, or why he supports me- or stays with me.  I truly believe that he is the true victim of my headaches.  He really needs to be held and supported right now... so I guess what I'm asking.... is can you support Coleman, my husband??? I don't know what I'm asking.  I just know that he need someone right.  And even though its breaks my heart, I understand that someone cannot be me.  I can put myself in his shoes, but I cannot truly understand what he is going through because I am not a supporter of someone with ch and am that someone with ch.  Maybe someone here knows what I'm asking... Please help my husband.. his name is on ch.com is Coleman   coleroth13@yahoo.com and is more of a newbie here than I am.   thank you for reading my plea.   God bless all of you, Ppattya :)

Hi Sweetie,
I'm married to Blake,  a CH sufferer.  We've fought the battle for years.

It's hard but not impossible.  You all are in a tough spot right now but I'm glad you've found us.  There is a multitude of support here for you and you hubby, Coleman.

My best advice for now is for you both to study and learn all you can.  Knowledge is power.  The more you know the better your coping skills will be.

I will be happy to help your husband.  I would also suggest that he come here and post so that we all can help him.  

If you would PM me your phone number, I'll be more than happy to talk with him.  Sometimes just knowing there is someone who understands is comfort in itself.  The same as when you are a sufferer.

I'm sorry about your friend abandoning you.  Perhaps if you would educate them a bit they might understand.  If not, you have friends here that will help hold you all up through this.

Keep talking to us and ask Hubby to talk to us too.  Remember....we're here to help.

Hang in there, Sweetie.....it really is manageable and you all can still have a life in spite of CH.

Jackie

hi patty:
its me again.
if coleman needs some guy time with someone that does understand a bit please let me know.
i have been looking for an excuse to go fishing in cda anyway.

Karl

You just keep bringing on the smiles and suprises!!   (where's that spell check any way?)
p

Hi Patty.  Welcome to both you and your hubby Cole.

I am a supporter to my dear hubby Phil.  We also have been doing battle for some years now.

Listen to Jackie.  She is a very wise woman.

I'm sorry to hear that your losing friends over this.  Not to be blunt, but maybe they weren't your friends to begin with.

Don't let CH over take your whole life.  Take your pain free moments and live them to their fullest.

Jen

I'm with Karl on this one.  PM me if you'd like--I'll send you my phone number.  

As for fishing in cda, I've done a little fishing on Hayden Lake for pike and bass.  Some nice pike in there.

Best,

George

Hi Ppattya-

A long time ago I posted that the one thing worse than having CH is seeing a person you care about go through it.  Supporters have it just as bad or worse because they can't do anything about it.

As was posted above, real friends don't bail on friendship.  I have no problem with telling people I have CH and educating them if they are interested but I do not put myself on display when getting hit.  I avoid people like the plague.  I'm not imbarrased, I just don't like people around me when getting hit.

The best thing your husband can do is educate him self about what you go through and tell him this is something YOU have to deal with.  When I was married this never seemed to be a problem because I dealt with it.  It was mine and not my wifes problem.  

-P.

I, too, encourage Cole to post here - and to read and learn as much as possible!

I've had to watch Gary suffer chronic CH since March of 2006 (nothing compared to many people on these boards).  The difference, I think, is that Gary also has complications (so far still unexplained), and he has not had a pain free minute since sometime in early 2007.  Unless you include sleep: which, if he's lucky, he gets a little over 2 hours any given night (though it's usually sleepless for 3 - 4 nights than a nice stint of 3 - 4 hours some afternoon/evening/early morning).  No one should suffer like this, and sometimes I cannot bear the "guilt" of his pain as he cries to the universe to release him from this suffering.

I have felt VERY empowered having knowledge.  I feel like I'm doing something for him by learning about it and sharing new ideas that we learn about here with him.  I know I'm helping him by getting myself support (and therapy), because being emotionally stable is about the best gift I can give him.

BTW, we've started telling people he has a brain disease - and if they ask more, we tell them a dysfunction of his hypothalamus.  It's the truth, and it doesn't result in stupid responses because they're reacting to the word "headache."  I won't even call them headaches on this board - I always refer to them as attacks.  I think one of the worst things that has happened to people with CH is to have this AFFLICTION labeled as a "headache."  Too many people just can't see past that word and simply have no idea what "CH" suffering is - and calling it "cluster headaches" doesn't help them understand.

Hope to see Coleman here!!!!!!!!!!!!!!!!!!!!!!!!!

Laurie

Welcome to you both.  I'm a supporter for almost 18 years now.  

Friends and family who leave you high and dry because of a physical affliction are not to be mourned.

To me it's the same as not offering to be with a friend that has cancer.  You can't catch it!  You just support them.

We got out of the habit of entertaining because of the unpredictability of CH.  During the "good" times, we try to re-establish contact, but some are hesitant.  Oh well.  I'll not waste my time on someone who would back off due to something over which there is no control.  It is just part of our lives.  And it's not contagious!

coleman is shy, but is making some conections thanks to all of your responses.  He and I both are learning at the speed of lightening about ch and ourselves. I love reading all of your stories and knowing that I am not alone.  Coleman is working so hard to find me o2, I know I will have it soon.   p

Keep hanging in there Patty.  I'm a firm believer in the power of positivity and it sounds like your staying positive.  That's great.  You'll get a handle on it, I just know it.

Patty,

One thing I've worked on with my wife (I'm the sufferer) is the "graceful exit" from social situations, and for my friends, tried  to bring them enough up to speed to understand a bit about it, enough so that many of them now know that when I say, "I got a little 'bad brain' coming on", they know. I try to smile to them through the tears so they know why I'm leaving.

It's loosened them up and, wierdly, brought just a tinge of humor to the situation. It wasn't always this way as I used to avoid doing anything while in cycle. Now, it's easier (not easy, but easier).
And, if I recover quickly after an injection, I re-enter and smile and I know they get it when they say, "dude, that was f'ed up, you feel better?"

It ain't perfect but its better.

Scott

It's hard to understand such a vile thing. Supporters rock. Chin up and heels down. Will do. We can be friends...should we start now? :o
all the best
the bb

Hi Patty and Coleman -

My name is Christy and I've been supporting Guiseppi for longer than we've known about CH. I agree that it's very painful to watch our sufferers. I'd be willing to share experiences. Am on the west coast but travel all over.

Best of luck.

Hi Patty,

i'm only new here but one of the most helpful things about finding these sites was the video clip of someone having an attack (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE ) - I sent this to my family who had been getting cheesed off that my husband keeps missing family events, birthdays, new babies, etc., and they were really blaming us for not being around.

Anyway I had tried to explain over and over about how much pain he is in, and how exhausted physically and emotionally he is afterward, and had started to feel that they were really lacking in compassion. I'd tried to tell them it's worse than childbirth etc, but I guess they'd been assuming that was exaggeration and that he was being lazy not turning up places - like he had a choice! So I sent an email with a link to that video as a last effort to get some understanding.

I was amazed at the change -  they all were overwhelmed and so sympathetic and it's finally clicked that this is no ordinary headache - they even seem to understand now how hard it must be for me and have offered me much more support since then. So what I realised was that in my case at least it's not that they didn't care, they just had NO IDEA. It had been impossible for them to imagine how bad the pain is, especially when they never see him when it's happening.  Pictures can be worth a thousand words...

Anyway I really hope things look up for you guys. Maybe if your friends come to understand how real your pain is they will be more likely to try to admire Coleman for what he does and help and support him in supporting you.

Lisa

That video had a HUGE impact on me when I was first learning about my boyfriend's CH. I can't even put into words what went through my head. I showed it to every one of my friends and family.

In a year my boyfriend went from no one but his Mom and Dad as support, to my entire family, and all my close friends all thanks to that video and this site. Information is power, but that video is ammunition.

I have had a few acquaintances (ex co workers and such) that seemed shocked that I would "Willingly suffer through a relationship with someone like that" My response was to ask them if their significant other was to be permanently injured somehow in a car wreck would you love them any less? I was never disappointed in the back peddling they did when you show someone their own hypocrisy.

Hugs to you both, and wishes for understanding and loving friends to come your way! Oh wait we already are, LoL. Oh well HUGS anyways!

Minxy

You guys are all so cool and your words so needed. We don't really talk to those friends anymore and ;you know what the decion was one that my husband and I made together and one we do not regret.  life gets lonly alot now because they bacically were our only friends, but we feel better as a couple and a family with eminies as friends.  my husband coleman and I are now back online. Me as Tanyana.  I would love to talk to someone who is not two years old and cole would love to get to know all of you.
Every one hang in there and please bring us up to date.  thanks all Patty

Hi Patty,

Nice to see you back.  Hoping things are well with you and yours.

Love to you,
Jackie

Tanyana,
You can meet some great, I mean really great people here.  If you want to meet face to face look for the info on the OUCH convention that will be held in July.  The information should be posted, hopefully, within the next few days.  It will be under Meetings & Gatherings. That is also a great place to go and set up a meeting with people in your area.  We just did that right after christmas.  And even tho I had been posting here for awhile, we finally met some cher's in person and it was really wonderful.  Just remember you are not alone in this.  We are all here for you.

Louise

PS - my son Adam is the sufferer and I am his main supporter.

Welcome back!

Laurie

Hello, hello, hello and finally  hello.  I have not been posting much because Im not sure what to say or where ( what are ) to post it.  I have been working with Batch and Clusterchuck to get my hits under control. They are morphing on my and throwing me for a loop. I am 12 weeks pregnant also and THAT threw me for another loop.  All in all, I have found some really great people here and wish to make some more much needed connects.  Not a good talker, but wouldn't mind hearing from ya'll anyway.
Here's to all of you supporters. Without you we chers would be beast bait.
Tanyana