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        Supporter's Corner >> Supporter's Corner >> I'm Married to a Cluster Sufferer!
        
(Message started by: ti_beach on Sep 8^th, 2006, 1:46am)

Title: I'm Married to a Cluster Sufferer!
Post by ti_beach on Sep 8^th, 2006, 1:46am

I met my husband about 2 yrs ago. He told me he suffered from clusters, but I had no idea what they were! About 1 yr ago, his clusters started again! We got married Oct 2, and around that time, his clusters became full blown. We met with a dr. in Raleigh, and he prescribed topamax, and maxalt! These drugs worked wonders for my husband. He took the topamax for approx a month, along with the maxlat, when he felt a cluster.........Things were great till Aug! Small clusters.....a few full blown clusters......was really bad in late Aug. It's now Sept 7, he had 2 good days....and nights, but without sleep........NOW.....started about 12 am................A CLUSTER!! [smiley=frown.gif] It would be nice to talk to someone that is married to a "cluster" sufferer!

Title: Re: I'm Married to a Cluster Sufferer!
Post by mrs mac on Sep 8^th, 2006, 10:15am

Hi there, and welcome to ch.com!!!

my name is Sandra and i am also married to a Cluster Head!!

i would be happy to talk to you and answer any questions you may have and try and reduce any worries you may have also!!

My hubby has been suffering with this horrendous condition for 2 and a half years now, and it is one of the hardest things i have ever had to witness and deal with, Andy is chronic, and has anything up to 8 attacks a day, some are just minor ones, but other are full blown kip 9 or 10's, all i can tell you is that you just have to be there for them, there isn't really much you can do whilst they are in attack, most of the time they don't want anyone else around them any way!!

Andy likes to know that i am there if he needs me, and i usually bring him his ice pack, and give him lots of cuddles after wards!!!

hope this helps

sandra xxx

Title: Re: I'm Married to a Cluster Sufferer!
Post by maffumatt on Sep 8^th, 2006, 7:02pm

Welcome, we clusterheads love our supporters here. Without you guys our lives would be hell. Don't give up and don't let him give up.
Matt

Title: Re: I'm Married to a Cluster Sufferer!
Post by ti_beach on Sep 8^th, 2006, 11:20pm

Thank you both for your responses!! Ray (my husband, and cluster sufferer) is the best thing that ever came into my life. He has suffered with clusters for approx. 18 yrs. Before we got married, he tried explaining his clusters to me. [smiley=yikes.gif]...When he started have "small" ones...I thought, well.....I can handle this! When they turned "full blown"....I thought....OMG!! There has to be something I can do!!!!!!! [smiley=bigcry.gif]...Only to learn, there is nothing I can do to help my husband! Then we found the "wonder" drug for him....topamaz, and maxalt!!! 9 months of clear, smooth sailing..... [smiley=biggrin.gif] then, BAMMM...here they are again!! I am a recovering drug addict, being clean for over 10 yrs. now. I now know how my family felt being helpless! The only difference is, Ray can't change his illness!! [smiley=bigcry.gif]. All I do is sit in another room when he has an attack....listen to his pain.........and cry my eyes out, cuz I can't do anything for him!!........He thanks me for being here, but I would not be anywhere else!!! He is my RAY of sunshine!!! Thanks for listening!

Robin xoxo

PS. Thanks for the welcome!! :)

Title: Re: I'm Married to a Cluster Sufferer!
Post by MJ on Sep 9^th, 2006, 12:46am

ti_ sounds like your the best thing to come into his life as well.

Hang in there it will pass. Welcome here.

Title: Re: I'm Married to a Cluster Sufferer!
Post by ti_beach on Sep 10^th, 2006, 11:17pm

;;D Hi Everyone! I checked out alot of other catagories to make this post, but alot of them had old dates on them! I just want all and any of you to know that this is the best thing (site!!) that has happened for us!!! Ray knows that he is not alone now!!! And I know that ppl here that understands what supporters go through! I have asked Ray to put a post here!! He has sat here beside me alot!!, reading with me. He's thankful that I found this site, so that I can learn and understand more......lol! He doesn't know how happy I am to have found it!! Just to read and know about others that suffer and those of us that love those sufferers'!! Even though he has suffered for so many years, I had no knowledge of clusters before meeting him in Oct, 2004. His clusters did not surface until about Aug, 2005...with shadows.... after we got married Oct. 2005, he was with full blown clusters.... [smiley=referee.gif] TIME OUT!!! I'ma thinking......OMG, we got married and his headaches are back!!!!! :-/ !! I kinda wondered about that, but I knew that wasn't the reason! Chit happened! LOL! I Thank God for this site....and I THANK GOD for my Wonderful Husband!!!....Even if he is a CLUSTERHEAD!!! ;;D I THANK EVERYONE THAT HAS ANYTHING TO DO WITH THIS SITE!!!
MANY HUGS AND MUCH LOVE

Robin (& Ray) 8)

PS. We need a chat room!!
Sandra! I would love to chat or talk with you!!
Matt! Thanks! I will never give up! (muscle arm up) LOL!
MJ!! Thanks! He says that to me!! I AM HANGING!! ;;D

Title: Re: I'm Married to a Cluster Sufferer!
Post by georgej on Sep 11^th, 2006, 1:30am

I'm a sufferer (perhaps "endurer" would be a better word) so I don't often post here, but....

Ray, come see us on the other boards (if you haven't already), eh? We'd be glad to meet you.

Welcome to both of you. Ti--you're a fantastic supporter. Ray's a very lucky man.

Best wishes,

George

Title: Re: I'm Married to a Cluster Sufferer!
Post by Mrs Deej on Sep 11^th, 2006, 11:18pm

Hi there Robin!

Welcome to this site, I'm sorry you had to find us, but know that we will do our besst to listen and help in any way we can. My husband, DJ, was a sufferer for many years and started this website hoping to find what you did...support. He was diagnosed with moyamoya (www.moyamoya.com) and when he had his nuerological bypass surguries they quit...how you ask? Even the doctors don't know. I am lucky enough to say I have never witnessed him having an attack, knock on wood, but I am here to say that I have witnessed an attack and understand your fear and frustration.

Know that we are here to help and give you whatever you need. Please read as much as you can and ask as many questions as needed, that's what we are here for!!

If you need anything, please don't hesitate to PM me.

Much love and support,
Steph

Title: Re: I'm Married to a Cluster Sufferer!
Post by BB on Sep 12^th, 2006, 10:00am

Hi Robyn. welcome !

My name is Annette and I am married to a cluster warrior too.

I always tell him that he has cluster which is a rare condition because he is a rare specimen of a gentleman himself :)

Hang in there with your DH. The hard time will pass and you will appreciate the good times much more. Things like this make a relationship so much more meaningful and deep.

A song comes to my mind : "This is no ordinary love"

Take care and painfree wishes to you all.

Annette

Title: Re: I'm Married to a Cluster Sufferer!
Post by kayarr on Sep 12^th, 2006, 11:32am

Robyn,
Nice to meet you:) I am also married to a man who has CH.

Remember to breath and remember this hurts horribly but will not kill him. Ask him during a PF time what if anything he would like you to do for him while being hit.

example: If my husband runs out of O2 during a bad attack I run and get his new tank and make sure he has his pliers. My guy has specifically asked me to just go on doing what I am doing. He said it is comforting to him to have life going on around him while battling.

Something like this will indeed make your bond stronger if you let it. Please take care of yourself too.

Kimberly

Title: Re: I'm Married to a Cluster Sufferer!
Post by ti_beach on Sep 13^th, 2006, 12:54am

I want to Thank Each and Everyone of YOU that has responded to my post!! These posts have meant sooo much to me!! I know that Ray felt alone, being a "clusterhead", but I didn't realize how "alone" I felt!!, nor how he felt, because no one understands "clusters"!! We both have a "Home" now!! Thank You DJ, for making this site!!! MsDeeJ.....I would love to chat with you sometime!!
Hugs and Love,
Robin & Ray

Title: Re: I'm Married to a Cluster Sufferer!
Post by kayarr on Sep 14^th, 2006, 10:35pm

I know how you feel. When I first came here I actually cried. Lots of pent up stress I figure.
Keep in touch! Neither of you are alone:)

Kimberly

Title: Re: I'm Married to a Cluster Sufferer!
Post by ti_beach on Sep 15^th, 2006, 10:03pm

I cried too, Kimberly!! [smiley=laugh.gif]....finally....people that understood what we go through!! I was in AWE....that so many others were out there!!!! Everyone is soooo supportive! I ordered Ray a t-shirt from here. I told him that I had a surprise coming in the mail for him! It came yesterday......he said "Is this a t-shirt?". I said "open it!"....He said "That's the best shirt you've ever gotten for me"!! EVERY1 needs one of those t-shirts!! :P Thanks for responding, Kimberly!! If I can ever offer you any support, please let me know!
Hugs & Love,
Robin :) [smiley=hug.gif]

Title: Re: I'm Married to a Cluster Sufferer!
Post by kayarr on Sep 15^th, 2006, 11:41pm

Thank you so much Robin (and Ray:). I keep sending my husband links to research and suggestions. He wrote me this the other day after I sent him a link:

"Interesting.... But all it is, is Imitrex spray by a different maker. (see "triptan" in zolmatriptan) I used to use them but they were less effective overall than the pills.
I love you so much for caring about this stuff. Please keep it up. 2 against one is so much better and a damn sight less lonely. Your efforts and caring make my life MUCH easier ... I love you and hope that you feel cared for and about just like I do."

Of course that made me cry too.
I know our clusterheads appreciate everything we do. I also know we endear ourselves for ignoring the grumpy sides of them when they hurt or are exhausted. We know the real them and we admire the guts it takes to fight this fight. The cluster folks are brave, persistent and relentless in their love for life.......