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Supporter's Corner >> Supporter's Corner >> New board specifically for supporters!
(Message started by: DJ on Feb 14th, 2002, 10:50pm)

Title: New board specifically for supporters!
Post by DJ on Feb 14th, 2002, 10:50pm
So many people have asked previously about adding a special section specifically for those who have to put up with us clusterheads, our supporters.

If you support a husband, wife, son, daughter, loved one, friend, co-worker who had clusters, this section is for you!

:)

Title: [i][/i][Re: New board specifically for supporters!
Post by Margi on Feb 14th, 2002, 10:54pm
oh - VERY COOL, DJ!!!  Thank you SO much for doing this for us!!  K, no peeking - us supporters might say nasty things about youse guys in here.  Again, DJ - this is awesome that you did this.  This totally rocks.  And, one good thing about the new board is that it's REALLY nice to see the webmaster posting again.  You better be careful, dude or folks are gonna start calling you a ClusterGod again.  :P 8)


Title: Look,Margi! We've got our own room!
Post by KarenT on Feb 15th, 2002, 8:48am
;D

I'm still trying to figure all this out. Imagine my surprise when I saw the change...too much work and not enough  'puter gets me waaaaaaaaay behind. I like it anyway.  ;)

Title: Re: New board specifically for supporters!
Post by minnie on Feb 15th, 2002, 9:05am
Hi guys i'm happy to see this board.I'm sure it will be busy soon. seems funny to see you listed as a newbie margie  ;)lol.well got to go explore the sight but I'll be checking in.   keep up the good job supporters!!!!!      
                        Minnie

Title: [b][/b]Re: New board specifically for supporters!
Post by Margi on Feb 15th, 2002, 9:29am
Isn't it AWESOME that DJ has done this for us? I think we're making history here, gang.  

I think it's also important to remind the supporters out there about the Family Services Team at the OUCH website too.  Here's a link to our pages there:

http://www.clusterheadaches.org/family/index.htm

Hmmm....this is so cool to have our own little area now.  I just feel like nesting, now!  We'll have to get some nice plants and do some feng shui to make it all comfy in here.  We'll get some comfy couches, some punching bags and tons of kleenex.  I think we'll get a dart board too.  We can hang pictures of Hub and Jackie Boyd up there for practice.  

Yep, this works.  Thanks, DJ.

;D  I'm smiling BIG here this morning.

Title: Re: New board specifically for supporters!
Post by Monique on Feb 15th, 2002, 9:49am
Margi... honey.... what are your two gorilla's doing???

Your a naughty lady Margi Storey!!

LMAO

Title: Re: New board specifically for supporters!
Post by Margi on Feb 15th, 2002, 10:35am
Well, I'm glad SOMEBODY finally asked! She's a supporter gorilla, he's a gorilla clusterhead.  She's giving him a neck massage and trying to keep him calm through the attack.  She's a good little supporter.

What did YOU think they were doing?  I think you've lived in the Canadian boonies too long honey.  We gotta get you out here to the big city.  You've a dirty little mind, Mrs. Roadknight.

Title: Re: New board specifically for supporters!
Post by Margi on Feb 15th, 2002, 10:36am
either that, or she's picking nits out of his fur.  But I prefer the massage story, personally.
:-*

Title: Re: New board specifically for supporters!
Post by Margi on Feb 16th, 2002, 9:12am
Aw, thanks Ted.  K, shut up now.

:-*

Title: Re: New board specifically for supporters!
Post by Monique on Feb 16th, 2002, 10:21am
OH ME GAWD!!!  Margi's a somebody!!!
Sheez left me behind in my nothingness... :(
Way to go Sweaty!  
DJ's a smart man! ;)

Title: Re: New board specifically for supporters!
Post by Darleen on Feb 16th, 2002, 10:47am
Thanks for the new board DJ!!  See we are so special we now have our part of the board!!  Yippee!!!
8)

Margi  -  I always knew you were a somebody...

Congratulations chick!!



Title: Re: New board specifically for supporters!
Post by Donna on Feb 16th, 2002, 12:21pm
Just when I thought it was good, it got better.

This is a great idea, a great place to be and we have a great coach for our little rooting team here.  Only, why are your stars green, Margi?  Too busy to polish them?  Whats a girl gonna do!

The monkies are doing a good job.  Our Support Mascots..............I like that, don't all of you? :D

I'm going back to sleep now.  These nights are doing me in.  And those street lights are too bright. ;) 8)



Title: Re: New board specifically for supporters!
Post by tedski on Feb 16th, 2002, 1:03pm
Thanks DJ
;D

Title: Re: New board specifically for supporters!
Post by Todd on Feb 17th, 2002, 6:28pm
For the record -

I am a supporter as well as a clusterhead.

KTSSU,
T

Title: Re: New board specifically for supporters!
Post by Cheryl on Feb 18th, 2002, 10:59am
WOW!!!!!!!!!!! Isn't this progress... Incentive for the Media Committee HUH!

:)

Love
Cheryl

Title: THANK GOD!!!
Post by RACH on May 17th, 2002, 8:51pm
I HAVE BEEN CHECKING IN WITH THIS SIGHT FOR MANY YEARS TO FIND OUT THE LATEST ON CH FOR MY HUSBAND WHO HAS SUFFERED FOR 15 YEARS.  THIS NEW BOARD IS JUST WHAT WE HAVE ALWAYS NEEDED.  HE IS NOT IN HIS CYCLE RIGHT NOW (THANK GOODNESS!!) AND WE TEND TO ACT LIKE IT DOESN'T EXIST DURING THE OFF MONTHS BUT WE JUST GOT A NEW PC AND I THOUGHT I WOULD CHECK IN.  WHAT A PLEASANT SURPRISE!!  I'LL PROBABLY NEED THIS ALOT IN AUGUST WHEN WE EXPECT HIS CYCLE TO BEGIN.  WHO KNOWS MAYBE THIS WILL BE THE YEAR WE GET LUCKY!!  I AM ALWAYS LOOKING FOR KNEW INFO ON CH AND HAVE A NOTEBOOK FULL OF IT, AND  HAVE ASKED MY HUSBAND'S NEURO HOW TO START A SUPPORT GROUP TO SHARE INFO, NOW I GUESS I DON'T HAVE TO.  I APPRECIATE ALL OF YOUR  HARD WORK.  NO ONE ELSE TRULY UNDERSTANDS UNLESS THEY LIVE IT!!  GLAD YOU'RE HERE IF I NEED YOU.  THANKS DJ  
[center][/center]RACH

Title: Re: New board specifically for supporters!
Post by Not4Hire on May 17th, 2002, 10:04pm
I'm not tellin' her (RACH)....somebody, please!!!??

Title: Dear RacRe: New board specifically for supporters!
Post by ave on May 18th, 2002, 7:06am
Dear Rach,

it is nice the cluster supportgroup is so appreciated. However...

If you check you'll see that many of the people who post here are not in cycle/have no partners etc. in cycle. They don't need to come here. Yet here they are to support others through agony.

And though DJ and Margi deserve all you said in praise, it might be an even better  idea to give some support now, before it is August, share your knowledge, share your compassion.

Thanks for listening,
Ave


Title: Re: New board specifically for supporters!
Post by Dswife on Jun 13th, 2002, 8:53am
Hey everyone.

I'm the wife of a cluster headache sufferer and was looking for a place to interact with other supporters.  My husband has had chronic clusters for 3 years now.  Just wondered if I could join up with you guys.  It is SO COOL to see a website with a place for supporters to message.

Thanks for being here.
Jenny :)

Title: Re: New board specifically for supporters!
Post by Dswife on Jun 13th, 2002, 8:54am
Hey everyone.

I'm the wife of a cluster headache sufferer and was looking for a place to interact with other supporters.  My husband has had chronic clusters for 3 years now.  Just wondered if I could join up with you guys.  It is SO COOL to see a website with a place for supporters to message.

Thanks for being here.
Jenny :)

Title: Re: New board specifically for supporters!
Post by Margi on Jun 13th, 2002, 10:06am
Hi Jenny - Welcome!  :)

Pull up a chair and read everything you can find that's been compiled here for sufferers and supporters.  We're here to help.  Check out our Family Services Team at the OUCH website, in the menus above the map.



Title: Re: New board specifically for supporters!
Post by THEDONA on Jun 18th, 2002, 5:26pm
:'(Help!  My husband was just diagnosed with Cluster Headaches.  It was a guess on the doctors part.   So please those of you that know could you answer the following questions.  Do they occur at anytime of day and sometimes many times.  Do they stop only with pain medication.  Does it take several doses to make them stop.  Does anyone you know have the headaches without the other symptoms?  Do they just start out of no where.  This whole mess started for us 8 days ago.  Everything I have read doesn't seem to fit the Headache profile that my husband has.  If you know the answer please help ???

Title: Re: New board specifically for supporters!
Post by Dswife on Jun 18th, 2002, 8:53pm
Hey, I think you came to the right place if your husband's doctor suspects he has clusters.
I'll share my experience with you, and answer your questions according to what I've found to be true.  (I'm the wife of a c.head too.)

Yes, they can occur at any time of the day or night.  However, they don't usually respond to "traditional" headache medications.  And after a while they would probably have some sort of pattern.  Does he just have them at night?  Or a certain time of day?  My husband is a chronic sufferer, and he is in the 4th year of his cycle.  

What is your husband's headache profile?  That might make it easier for the people here to answer the questions you have.

Hang in there...there is hope.
Jenny ;)

Title: Re: New board specifically for supporters!
Post by kaos on Jun 26th, 2002, 7:26pm


Greetings to all supporters from New Zealand.
Great to have this site.
I don't have much to support with, but find that living day at a time is too long - minute at a time seems to work best, that way we get a few good minutes in every day even if they're bad days.

It's easy to get lost in the doom and despair and miss the odd moment of happiness, and they do occur!

In the midst of all this anguish, a strange thing happened. A horse, long abused by its owners arrived at our place to use the paddock by the house. He was dropped off there and no-one came back to check on him.A bit of a farmer in my past, I couldn't ignore this poor fellow, and took time to check him out. He'd been bitten all over by a particulary nasty stallion, had been beaten mercilessly, and was to be fattened for dog food!!

NO!!!! Off to the vet - (more medical expenses?) wormed him and fed him regularly. Three days later he seemed to snap out of his misery and decided that not all humans were a bad lot. Our daughter arrived and bathed him, and after that, he wouldn't leave me alone. I call him Follow now as he had no name, and this is what he does.

Turns out he's a thorobred and had fallen on hard times when a teenage owner left for education. He passed into cruel hands and ended up with us.

It's strange how it has given us something new and exciting to focus on. It'll be summer B4 I can ride him, he's so thin, but he'll bring us moments of joy in the summer. It was good to do something for him and see a result. He's definitely getting fatter.

Funny how things come along at times when you need them to?

Even if you're not loooking for them.

This site is good! I'm a freelance writer, so if I can be of any assistance, just let me know.

Kind thoughts;
Love, peace, health and happiness always. Kaos


Title: Re: New board specifically for supporters!
Post by kristi on Jun 27th, 2002, 9:46pm
Thank you Kaos, for posting such a touching story.  My father always said God will give us something, when we most need it, to help us remember what is really important and where we are supposed to place our focus in life.  I would say then that God is blessing you through Follow.

PFDAN!

K

Title: Re: New board specifically for supporters!
Post by Svenn on Jun 30th, 2002, 3:55pm
For the record -

I am a supporter as well as a clusterhead.
Svenn

Title: Re: New board specifically for supporters!
Post by kristi on Jul 4th, 2002, 10:47am
Hi Kaos!

The Cult of Fungas.....where do I start?  The term is a lighthearted reference to those clusterheads out there who have achieved success in either relieving their clusters or in aborting their cycles with psychedelic mushrooms.  PinkSharkMark, or Pinky, is the man in the know on the subject and has provided a lifetime of information, guidance, advice, and support to the CH who have tried it.  

Although the reference is lighthearted, the subject is not.  It has allowed many clusterheads to regain control of their lives, to live completely, or nearly for some, painfree, to also become free of medications and their associated negative side affects.

From personal experience, my husband is episodic and was mid-cycle when he dosed.  He had 4 shadows and 2 headaches in the first five days, and nothing since.  That was 36 days ago!!!  He was taking 5 different meds prior - now he is med-free!  To quote the words of another successful shroomer, "it has given us our life back."

An explanation of trip levels, dosing guidelines, and other great information can be found on the following thread by Pinksharkmark:

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1013709016

The are literally hundreds of threads about this subject in the archives and currently on the medication board, if you are interested in researching it further.

PFDAN to all!

K

Title: iRe: New board specifically for supporters!
Post by kaos on Jul 6th, 2002, 12:27am
Greetings to all!

Thanx Kristi!
That is REALLY interesting. Its taking a long time to read all the links but am so grateful that they're there!
We are lucky that Pinkshark is so good at research and explaining things, and that you guys share the input.

Back to you all soon
THANK YOU
Kaos

Title: Re: New board specifically for supporters!
Post by THEDONA on Jul 6th, 2002, 11:48am
Hey everyone.  My husband seems to cluster Headaches for sure.  He has the pain in one eye and we have noticed that the eye turns red and he sweats on that side of his head only.  He's offically had them now for 3 weeks I think so we don't have a pattern that we can tell.  But the weird thing is some days the headache is in the right spot not as painfull but stays all day and nothing can get rid of it.  Other times it's the stabbing pain in the eye with the other symptoms I mentioned.  He can't use Imetrex because of his blood pressure so he takes verapimil (sp) indocin both daily weither he has a headache or not and a prescription painkiller if nothing works he has to go to the ER for intervention.  This has been so bizzare.  I'm really worried about the amount of medication he takes.  Anyway thanks for listening I'm so glad I found this spot. ;D

PS how can I get a cool picture by my name too. LOL ???

Title: Re: New board specifically for supporters!
Post by Ted on Jul 6th, 2002, 12:09pm
Thed, you might have your husband try pure oxygen (O2) if he can't use Imitrex. Pain killers, including those prescribed, are generally a waste of time on CHs. they do very little, if anything.
The lighter headaches that he experiences all day could be what we refer to as shadows. Sometimes they prelude an attack and sometimes it's all that will come on with no full-fledged attack.
You can add a cool picture next to your name if you edit your profile and go to the spot that says something like "I have my own picture" (It has to be on a website already). In the spot provided just type in or paste the address the picture has (Not the entire site's address. Just the address specifically for the picture, which you can get by right clicking directly on the picture and hitting "properties"). Well, that's how you get a picture up. We'll let you know if it's a cool one. :-)

Title: Re: New board specifically for supporters!
Post by THEDONA on Jul 6th, 2002, 8:37pm
Thanks Ted that explains alot!  Now at least we have some more information.  You read so much just to learn and still miss stuff.  And I found my cool pic. thanks. ::)

Title: Re: New board specifically for supporters!
Post by bowenscmt on Jul 24th, 2002, 11:44pm
I am a supporter of CH. My husband has had them for as long as we have together and that is 12 years. I never understood them until he tried to explain what is happening in his head. But of course never having had them they are a complete mystery to me. Also being a massage therapist he doesn't even want me to touch him when he is having a headache. I love him dearly and I would like to take the pain away but I know that I can't.  :(  He showed me this website and it was like he was home and I felt like I had someone to talk to about this. His sister actually said that it was all in his head and that he was making up this pain just to get attention. Well duh its in his head!!!

Thank you so much for starting this support website

                      Bobbie

Title: Re: New board specifically for supporters!
Post by Charlie on Jul 26th, 2002, 5:35am
Welcome Bobbie.

This link is for you and yours. It's something to copy and print for everyone. Simon does it right. It's worth the effort:

http://www.ouch-uk.org/ch/note_colleagues.cfm

Charlie

Title: Re: New board specifically for supporters!
Post by bowenscmt on Aug 21st, 2002, 12:07am
Sarah,
I totally understand where you are coming from, I too am a supporter of a CH and he has had them for 21 years. I have only been dealing with CH for about 12 years but the one thing is to just stick by him until the cycle is gone. People on this website are awesome with their support. It has given me a lot of information and a lot of things that I had no clue about with CH's. Be strong and just keep plugging along and it does get better. If you need someone to talk to here is my email address: owens_bobbie@hotmail.com and I will be more than happy to talk or just correspond with you.
Having a circle of people that know exactly what you are going through is a lot of help. Let me know if you need to talk and I will try to help out.
Hope this helps you in your time of need.

Bobbie O. CMT

Title: Re: New board specifically for supporters!
Post by bowenscmt on Aug 21st, 2002, 10:46am
Meg,

That is okay my mother-in-law told me one time that the reason why he gets these headaches is because of the tumor he has in his head. I have seen his x-rays and there isn't  a tumor in his head, because he also had a head trauma. Have your husband talk to his doctor about a drug called Imitrex. It has seemed to work really well for my husband and he swears by it. It takes the headache away in about 5 minutes on my husband.
It is a little expensive to buy but it does work. So if have any questions let me know and I will try to help you out if I can. Talk to you real soon.

Bobbie

Title: Re: New board specifically for supporters!
Post by bowenscmt on Aug 22nd, 2002, 1:27am
Meg,

Once he gives himself the shot a couple of times he will get used to it but if he doesn't like needles then that is a problem.  There is another thing that Keith (hubby) does and that is very cold showers until he gets the chills.  There is an Imitrex nasal spray maybe that might work too. There is another drug that might help too it is called Maxalt MLT and its by prescription.

Just keep a stiff upper lip when he has a episode because it does eventually go away.  :D

We have a daughter together and luckily she has not seen him with one of these headaches. But I have a feeling that someday she might see him with one but she does know that he gets them and if he has one he goes into the other room so she doesn't see him. She is a daddy's little girl and she doesn't like to see her daddy hurt at all.

Hope this has helped you and I will talk to you soon. If you need someone to talk to on the phone send me an email and I will give you my phone number -K-

Bobbie O. CMT

Title: Re: New board specifically for supporters!
Post by cootie on Oct 15th, 2002, 11:17pm
Hello.....Am new at this.....hubby just started back with the CH attacks last nite after almost 3 years remission....seems to start them up now around 9:30 pm on the button !!! He's suffer'd them for a good 10 to 15 years with off and on periods of a few years relief. Noticed the past few weeks he isn't eating any breakfast (to much in a hurry) and eats lunch alot later at work cuz he is to busy....now he isn't gettin to dinner till several hours later....change isn't always good...am wondering if some of this plus this time of year (Oct.) and maybe stress has trigger'd them. He used to get them twice a day like clockwork...there's nothng I can do cuz he goes into his own world of agony. He was on imitrex and verapamil and got started rite away with the last bout and nicked the attacks in the butt for a while...hope to do that again !!! I hate it when this stuff starts back up...he is always in a hurry to and think he needs to slow down.hurry to get ready and hurry to get here or there and hurry to get back...it can't be good for this condition or triggers it possibly ?? Thanks....I'm rambling..sorry.....cootie

Title: Re: New board specifically for supporters!
Post by Margi on Oct 26th, 2002, 3:01pm
Hi all - I'm locking this topic, so you won't be able to respond to it.  I'm just afraid a new supporter's first post might get lost in here.

So if you have something you want to post, please start a new thread.

Thanks.



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