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Topic: What a great site - THANK YOU! (Read 238 times) |
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Garys_Girl
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Kill the Beast!
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What a great site - THANK YOU!
« on: Apr 4th, 2006, 5:35pm » |
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Hubby suffers from CH! NOW WE KNOW.
The many doctors he's seen haven't diagnosed this, but now we can take the info to one of them.
His first episode was in 1999 - nothing like the length of time many of you have suffered through. And thankfully it wasn't chronic (then). Sporadic enough to remain a serious mystery - which tests, MRIs and sinus surgery did not fix.
Alcohol seemed to be a trigger - but again, not frequently enough (at the time) to eliminate drinking - and boy did we used to enjoy a bottle of wine with dinner.
After numerous doc visits each year, we decided it was just migraines for which meds didn't work.
At the beginning of March, he started having them at least once a day, every day. He's had - what - 3 pf days since then? And the frequency is increasing - he'll have one between 2:00 and 4:00 in the afternoon, between 7:00 and 10:00 at night, and between 1:00 and 2:30am. They'll last from 40 minutes to three hours, on average. The worst was when he had so many it seemed he had one huge "migraine" for a little over 24 hours.
HOW DEBILITATING!
My heart goes out to all of you who suffer through this insane pain. While Gary was "happy" to learn his symptoms fit CH to a tee (FINALLY, a "diagnosis"!), we'd already discovered the benefits (partially and accidentally) of caffeine, oxygen and ultram/tramadol. But now, thanks to this site, we've got better information and more alternatives.
We'd pretty much given up on the caffeine though - the almost month of sleeplessness was really just too much.
He's a fighter by nature and thanks to this site, with its wealth of information and the posts (by so many of you suffering) with what you've done to fight this beast, I feel like at least he can enter the boxing ring with gloves on now.....
THANK YOU.
Laurie
P.S. Interestingly, two weeks ago when we went to the medical supply store from which we obtain the oxygen, they mentioned that they've seen a "thousandfold" increase in the number of people obtaining oxygen from them for cluster headaches. We live in Northern NJ. I wonder if this is due simply to increased correct diagnoses and information available about the effectiveness of oxygen re: CH - or if there's something "environmental" occurring that has increased the number of people around here suffering from CH?
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Laurie
"It's comin' like a freight train - can't you hear it?" - Gary
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Richr8
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It's all about today...
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Re: What a great site - THANK YOU!
« Reply #1 on: Apr 4th, 2006, 6:04pm » |
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Hi Laurie,
Sorry your partner is suffering, but atleast you found the right place. As you already know, there is tons of information here and many knowledgeable folks to answer any questions you might have. I would highly recommend that you have your hubby check in on the sight as we would love to meet him and can always use more input and support. Don't forget that the lights are always on and someone here to lend an ear or provide answers or support. Even if yo just have some venting to do, this is the place. You will never find a more understanding group of folks when it comes to CH.
pf wishes to you both,
Rich
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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TxBasslady
CH.com Alumnus
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Bass fishin' is a h00t It's the catchin' that sux
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Re: What a great site - THANK YOU!
« Reply #2 on: Apr 4th, 2006, 6:07pm » |
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Hi Laurie,
Welcome to the board.
More than likely, the increase is due to more awareness about 02 and CH. It's not an evironmental happening in your city or State...we suffer from all over the world.
Arm yourself with whatever info you need from this site, and take it with you to see the doc. There are alot of docs that don't fully understand CH, and sometimes we have to inform our docs of what we need. This is the way my doc is....I took print outs from this site, and he was very receptive.
I'm so sorry your husband suffers. It sounds as if he's having a really bad time.
There's a multitude of information here....just remember..that we all are different...and some things that work for some do not work for all. Sometimes it's a trial and error thing.
Good luck....and sending lots of PF vibes to your hubby.
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas! 
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Garys_Girl
New Board Veteran
Kill the Beast!
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Re: What a great site - THANK YOU!
« Reply #3 on: Apr 4th, 2006, 7:13pm » |
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Rich - unfortunately he's not much of a "joiner." I've told him about the site, sent him links - we'll see what happens.
Right now as his supporter, my seeking support and answers is what will do for both of us is my guess.
We've got an incredibly co-dependent (perhaps it's just love?) relationship as it is (we work together as partners, and willingly spend 24/7 together - for 13 years now). Often he's on the phone, I'm talking in the background, and he's repeating what I say.... he likes to joke he's just my puppet. So maybe on this site I'll be his mouthpiece?
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____________________________________
Laurie
"It's comin' like a freight train - can't you hear it?" - Gary
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TxBasslady
CH.com Alumnus
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Bass fishin' is a h00t It's the catchin' that sux
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Re: What a great site - THANK YOU!
« Reply #4 on: Apr 4th, 2006, 9:39pm » |
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You sound like a great supporter. I think it's great that you came here....and that you share the info with him.
For sure it has to be his decision to come here. It's perfectly fine that you are his voice.
We have a great Supporter's Corner here on the board. I hope that you will go there and read some of the posts....it will give you a greater insight as to how other supporters/spouses handle CH.
Someone usually here 24/7. If you need to come here and talk or vent or whatever...please do so.
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas!
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Ghost
CH.com Alumnus
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Farting relieves the pressure
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Re: What a great site - THANK YOU!
« Reply #6 on: Apr 20th, 2006, 5:02pm » |
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No 
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Illigitimus Non Tatum Carborundum
If all men are endowed by their creator, why was mine so short sighted?
***WARNING*** Oxygen will rust your pipes!
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