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Izzy

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Red Deer, AB, Canada
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Cluster Newbie
Oct 6^th, 2008 at 11:06pm

Hiya...

My husband Jon got diagnosed May 2007. He was in remission for a year & 4 months...but we're in another cycle. REALLY glad we found this site!!! Been married since August 21, 2006. He's 27 & I'm 24. My name's Izzy. So...we live in Central Alberta, Canada. What else? We're musicians, to boot. Salespeople, too, but don't let that depress you. We love our jobs. Kind of nice to be independent, what with having to live around a headache's shcedule...we'd LOVE to meet & get to know a lot of other people who lives are affected, too...right now we are totally alone here. Any questions: email us! Ta!

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"There are no monuments dedicated to me, and my name will soon be forgotten, but I have loved someone with all my heart and soul, and to me, this has always been enough.”

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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: Cluster Newbie Reply #1 - Oct 7^th, 2008 at 12:53am Quote: right now we are totally alone here. Nope. Nopt anymore you aren't. Welcome to the most caring supportive people you will eve meet Izzy. How can we help you? Linda
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Izzy CH.com Junior Offline Choose life. Posts: 70 Red Deer, AB, Canada Gender:	Re: Cluster Newbie Reply #2 - Oct 7^th, 2008 at 4:32am Thanks! Mostly we are spending time reading through all the info & familiarizing ourselves with the fact that it's not us in a bubble anymore. We have our family & church praying but it's such a great thing to finally have a connection to people who have been where we are. Can't even explain the relief.
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Jackie

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Re: Cluster Newbie
Reply #3 - Oct 7^th, 2008 at 6:15am

Hi Izzy and welcome. You have found the best place for education and support. Read and study all you can. Knowledge is power and will enable you and your husband to 'live with clusters' Check out the OUCH site (button on the seft). There is a ton of information there too.

There's always someone around to help so ask away.

Again...welcome,
Jackie

Oh....I'm married to a cluster sufferer too.

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MPMIII CH.com Veteran Offline Posts: 112 Alabama Gender:	Re: Cluster Newbie Reply #4 - Oct 7^th, 2008 at 8:51am Izzy, Sorry you had to find us, but glad you're here. Make sure to read all you can on the site. Lots of great information here. Give us a run down on your husbands regiment for the beast. Prevents, aborts, etc. Best of luck. Regards, Malcom
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on my knees Ex Member	Re: Cluster Newbie Reply #5 - Oct 7^th, 2008 at 12:50pm thank you for supporting a fellow clusterhead. supporter is the best thing we have, and takes alot strength on your part. you are not alone anymore. feel free to eask questions or to vent.
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barry_sword CH.com Alumnus Offline Mountain Biking Keeps Me Sane Posts: 3947 Bracebridge, Canada Gender:	Re: Cluster Newbie Reply #6 - Oct 7^th, 2008 at 7:16pm Hi Izzy and welcome. Sorry Jon is a sufferer but thanks that he has a supporter like you beside him. From another pair of Canucks. Barry&Angie. Sorry you are getting hit bro!
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Cluster Newbie Reply #7 - Oct 8^th, 2008 at 2:36pm Hi Izzy, bless your heart for being a supporter, not an easy task! When you get a chance please post what his current routine is, preventatives, abortives etc. Maybe we can make a few suggestions~! Guiseppi (Who loves his supporter of 28 years!)
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Izzy

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Re: Cluster Newbie
Reply #8 - Oct 8^th, 2008 at 4:54pm

Was asked to give a rundown of his process: He takes strong coffee right at the first signs, because it seems to help. Then he takes some Maxalt if he can (only can take 2 does in 24 hrs.) because it takes the pain down to 4. Anything cold helps; if he can freeze his head enough it seem to make it go away quicker. And that's all. We are researching the oxygen & other meds right now with the Dr., it's a little complicated because of the family history. But so far that's all we do.

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"There are no monuments dedicated to me, and my name will soon be forgotten, but I have loved someone with all my heart and soul, and to me, this has always been enough.”

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flipperlips CH.com Alumnus Offline Live, Laugh, Love Posts: 935 Mcallen, TX Gender:	Re: Cluster Newbie Reply #9 - Oct 8^th, 2008 at 5:23pm Hi Izzy. Welcome to the family. You're not alone anymore, you have a huge family here. I'm also married to a CH sufferer. You have come to the best place for support. The people here are awesome. There is so much information here, so keep on reading. Hugs, Jen
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Linda_Howell

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Re: Cluster Newbie
Reply #10 - Oct 8^th, 2008 at 6:00pm

Quote:

We are researching the oxygen

Research away....and then INSIST on it from your Dr.

Here is a link you can print out if you haven't already found it.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

By the way, have you joined OUCH? It's painless, it's free and there is strength in numbers. There is also a LOT of information there.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Linda

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Hurt people.....hurt people. Think about it.

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thebbz Ex Member	Re: Cluster Newbie Reply #11 - Oct 8^th, 2008 at 6:54pm O2 rocks glad your hear, sorry you have to be. all the best thebb
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Izzy

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Re: Cluster Newbie
Reply #12 - Oct 9^th, 2008 at 6:39am

Just realized I haven't said thanks yet. THANKS!!! From both of us. Except he's passed out on the floor of the bedroom sleeping for now so it's sort of I'm assuming he's thankful. *lol* He is. Both of us. Anyways, thanks so much for the article on Ox, that will be awesome to show the Dr. This is the first time the Maxalt didn't work & he had a full on 10...I just about lost my foot. I mean it...he stomped on my foot. *lol* He doesn't like being alone through it because touch helps keep him grounded; so I am usually sitting or standing beside/behind him or whatever, being his ouch pillow. The lady at Tim Hortons asked me how I got the bruise on my arm (which I didn't notice!) I told her "It was a 10." She just looked at me strange. Probably wouldn't have believed me if I even told her. I never drank coffee before last May. *lol*
Giu: you're cool man. (Frm Jonny)
Linda: Thanks so much for being!
Everyone: I'll get to know your names I'm sure...but know you are in my thoughts. Sanity is a precious commodity & it's helping that people are out there at random times of the night so I can decompress. Bless!!!

Update on process: He wants to be admitted & experiment with some different drugs; the Dr. said at the last appt. he might be willing to do this if he can have "proof" of the headache severity. I was like...so...you want a tape, or what? Proof. My bum. Anyways, tomorrow I'm going to call again & see if we can get some other options going. Today he had the most he's ever had in a day...4 of them. It was entirely new...once is gruelling...twice is hairripping...three times I wanted to be like %!!!! & the fourth one I just kinda was like Angry

There weren't even words...

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« Last Edit: Oct 9^th, 2008 at 6:43am by Izzy »

"There are no monuments dedicated to me, and my name will soon be forgotten, but I have loved someone with all my heart and soul, and to me, this has always been enough.”

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Callico

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Re: Cluster Newbie
Reply #13 - Oct 14^th, 2008 at 5:16pm

Hi Izzy,

Sorry to be late getting to you. Welcome aboard to you and Jon. You have family now that reaches around the world.

You said Jon used coffee and it helps. That is good. The caffeine helps some of us to alleviate the smaller hits. I have found that energy drinks work a little faster, and will help with the stronger hits because I can get more in me quicker and the taurene seems to supercharge the caffeine. The trick to them is to chug one down as rapidly as you can drink it. Without stopping for air if you can. He can follow up with coffee also if he feels like it. I try to use coffee for shadows and the Red Bull, Monster, etc for the bigger hits. It has to be early on in the hit though. ONce it has taken hold you are in for the ride.

Definitely insist on O2! It has been a real help to a lot of us, and it has no bad side effects!

All the best.

Jerry

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Izzy

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Posts: 70
Red Deer, AB, Canada
Gender: female

Re: Cluster Newbie
Reply #14 - Oct 17^th, 2008 at 10:41pm

Hey guys; just an update:

Thanks everyone for the support & tips & posts of links. It REALLY helps! So far his worst day was 6 of them in 24 hrs; and it appears that it climaxed because it's getting less frequent & less intense...fingers' crossed...his last cycle was 17 days so hopefully this follows through although one never knows.

He got taken off the Max because Dr. thinks it's messing with his heart but not sure, waiting on the results for that. He's been having a racing heart beat & irregularity for about 4 days. He has another appt. Monday morning at 9:30 & we will see about admitting him for that; it's more serious than it sounds b/c of family history. Still waiting on the ox, Dr. isn't too keen on giving it but I'm stubborn; he'll get it if I have to tap my contacts to do it. It's who you know, sometimes...

Today at 2 pm marked his first 24 hours PF since the start of this one; so we are hoping. But his last one he got a few days PF intermittent & then some nasties so again...bated breath.

Thanks again for everything; we keep you in our prayers. Bless & see you around!

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"There are no monuments dedicated to me, and my name will soon be forgotten, but I have loved someone with all my heart and soul, and to me, this has always been enough.”

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