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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: Most hated aspect of CH Reply #25 - Jun 7^th, 2010 at 9:24am That's some great news Neuro! Here's to seeing you as yet another buster success story...and soon. Joe
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Chad CH.com Hall of Famer Offline Posts: 738 Emmaus, PA Gender:	Re: Most hated aspect of CH Reply #26 - Jun 7^th, 2010 at 10:06am Brew wrote on Jun 6^th, 2010 at 12:22pm: So you'll be cheering for the Blackhawks tonight then, right? Nooooooooooooooooooooo!!!!!!!!!! GO FLYERS
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dockwolk CH.com Junior Offline ya gotta love a good steak Posts: 25	Re: Most hated aspect of CH Reply #27 - Jun 7^th, 2010 at 8:27pm I read a statistic a couple of years ago that only 12% of people ever get rid of ch's for good. I don't know how accurate it is but I almost cried. Maybe I did...not sure.
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Skyhawk5 CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1320 Ypsilanti, Mi. USA Gender:	Re: Most hated aspect of CH Reply #28 - Jun 7^th, 2010 at 10:15pm How it can completely take me out in any situation at any time. Luckily I've learned enough to limit this, but it still happens. Don
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Re: Most hated aspect of CH
Reply #29 - Jun 8^th, 2010 at 3:56am

My headaches can disappear for a few days making me think I've won. Then...."We're ba-ack!" And this time they are brutal - peaks of kip 8-10 with troughs (the time between) at about kip 2-4. I get hammered once an hour for about 40 minutes for at least 12 hours at a time...

But when they cycle ends, I quickly forget the pain and start making plans again...optimism returns.

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The cure is out there somewhere...

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RuVa

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Re: Most hated aspect of CH
Reply #30 - Jun 8^th, 2010 at 7:31am

Mostly I hate it when my wife just sits there helplessly during a heavy attack, fighting not to cry, fighting to be strong. Since I have only had 4 cycles so far it is pretty new and still very scary for her.

She knows not to bother me with "what can I do" questions, but that doesn't make it easier for her. She usually gets a napkin soaked with cold water to put on my face to help with the temperature increase and so she feels like she is doing something. That means a lot to her.

It is frustrating to know what impact this has on my wife, during and after a cycle.
I read here on the forum as a reply to one of my posts, and it's something I talked with my wife about as well... CH is a pretty selfish thing because. It has an impact on how we feel, on how we act and sometimes we can't even control it.
It wears us down but we somehow need to find a way to enjoy the lesser things in life.

It's just not easy, though we manage.

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Love wasn't meant in the heart to stay, for love isn't love until you give it away.

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davidj35

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Re: Most hated aspect of CH
Reply #31 - Jun 8^th, 2010 at 10:44am

Where does one begin, the friends and family advice, the constant interruptions day and night as the attacks come in waves 8 to 10 times throughout, the horrific pain, the fear of not getting to your oxygen in time, the interference in your job, fear of side effects from the meds, and on and on.

But as others have said the feeling as an attacks leaves and the appreciation of being out of cycle for those of us that are thankfully episodic are two of the sweetest feelings anyone will ever experience.

David

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Re: Most hated aspect of CH
Reply #32 - Jun 8^th, 2010 at 12:08pm

I hate the fact that no one understands it because it's "just a headache" (even though it's a headache for 5 months at a time), that it's always at night when you need to sleep and no one can actually see you in pain. I love the fact that Topamax has made me lose 15 pounds in the last 2 months of taking it since food has lost all apeal to me, though I can't wait to go off Topamax, because I'm sick of not wanting to eat.

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Melissa CH.com Moderator CH.com Alumnus Offline Don't give up! Posts: 7238 Central WI, USA Gender:	Re: Most hated aspect of CH Reply #33 - Jun 8^th, 2010 at 2:19pm Guiseppi wrote on Jun 6^th, 2010 at 9:27am: The time lost I can never get back. Joe This is it for me too.
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-johnny- CH.com Sponsor Offline theres no smoking on the dock Posts: 1642 fayette county ohio Gender:	Re: Most hated aspect of CH Reply #34 - Jun 8^th, 2010 at 3:37pm Melissa wrote on Jun 8^th, 2010 at 2:19pm: Guiseppi wrote on Jun 6^th, 2010 at 9:27am: The time lost I can never get back. Joe This is it for me too. during my grandmothers 80th birthday day party i sat in my van out in the parking lot screaming. one of the many things i missed
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foolclip281 CH.com Newbie Offline One Deep Until Die Posts: 20 Spring, TX Gender:	Re: Most hated aspect of CH Reply #35 - Jun 8^th, 2010 at 4:30pm The fact I actually consider suicide when I'm having one.
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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Most hated aspect of CH Reply #36 - Jun 8^th, 2010 at 4:32pm The dread of the next one.
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davidj35 CH.com Veteran Offline 02 is my best friend Posts: 151 x0\|LaGrange\|USA\|\|0\|0\|NY,New_York Gender:	Re: Most hated aspect of CH Reply #37 - Jun 8^th, 2010 at 11:29pm Good one Jeannie, that dread every time you feel a trwinge or a shadow, is it coming and if so how bad.
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E-Double CH.com Alumnus Offline Are we ourselves? Posts: 6948 Commack,New_York Gender:	Re: Most hated aspect of CH Reply #38 - Jun 9^th, 2010 at 6:19am I will always say that it's the pain that it causes others.
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LasVegas CH.com Sponsor Offline Episodic CH since 11 yrs old, now 50. Posts: 2020 north of the 60th parallel Gender:	Re: Most hated aspect of CH Reply #39 - Jun 13^th, 2010 at 2:48am torturous days/nights, helplessness, loss of time/jobs/relationships/money, embarrassment, fearful thoughts
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Re: Most hated aspect of CH
Reply #40 - Jun 13^th, 2010 at 5:04am

definitely the pain for me, fortunately, not many ppl have seen me actually being attacked by the beast, but the thing that sticks in my mind the most when someone did see it, is the fear in their face when I was rolling around in agony and there was nothing they could do. That was pre-diagnosis, so even I didnt know what was happening to me, and thats scary.

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I wish I could turn back the clock and the only pain I feel is the pain of a grazed knee

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Re: Most hated aspect of CH
Reply #41 - Jun 13^th, 2010 at 12:23pm

I have to say the part i hate most is lost time with my four year old daughter. She doesn't really have the capacity to understand whats going on just that mommy is in pain and i can't play with her. and the fact she looks so sad and helpless when i'm sitting in a corner rocking back and forth begging god to take the pain away.......... Cry

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Kat CH.com Junior Offline I Love CH.com! Posts: 36	Re: Most hated aspect of CH Reply #42 - Jun 13^th, 2010 at 9:48pm Guiseppi wrote on Jun 6^th, 2010 at 9:27am: The time lost I can never get back. Joe You said it Joe ... I have lost way too many years and time keeps ticking away!!!
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mike91769 CH.com Newbie Offline I Love CH.com! Posts: 9 lowell ma Gender:	Re: Most hated aspect of CH Reply #43 - Jul 20^th, 2010 at 4:21pm the way they and i make other people feel. the watching of the clock and waiting for the next one.
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JustNotRight

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Re: Most hated aspect of CH
Reply #44 - Jul 20^th, 2010 at 5:25pm

The painful look in my families eyes when they see me with one.

The pain CH causes!

The hours of my life it's wasted.

The looks I get from people at work and lack of understanding of some.

The disruptions it causes in my life, house, with family and even my dog, and yes, I did say my dog. There have been a few times when I have been rocking back and forth with the pain, sitting on the bathroom floor with my Dad handing me refreshed cloths & my dog standing over my legs protectively emitting a low growl, like he's trying to protect me from an unseen evil.

My dog has gone as far as to take out his aggression towards the beast by shredding the tissues I've gone through after a particularly bad CH hit. He's done this a couple of times and only selects the tissues I've used during a CH hit and nothing else that is in the garbage. Needless to say I empty the garbage can right away after a bad one now. Roll Eyes

CH affects all, even our pets.

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« Last Edit: Jul 20^th, 2010 at 5:27pm by JustNotRight »

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bonkers

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Re: Most hated aspect of CH
Reply #45 - Jul 20^th, 2010 at 7:42pm

The pain is horrible. When it's unremitting day after day, and year after year, it's evil. When it destroys the best years of a young man's life, the years when he becomes educated, finds a mate and his place in the world. When it makes him wish he were dead rather than alive during those best years. Seeing him talking with friends on the rare occasions when his pain subsides; friends who've done all those "normal" things, them talking about their young children and their careers while he responds with tales from his football days in high school when he "scored" with all those girls. Knowing that "his" best years of his life were back then and having to see the odd smirks on his friends faces. That's from a father's point of view. I hate it that I have some idea of what it's like for him.

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Excessive sorrow laughs. Excessive joy weeps.
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ccbiggsoo7 CH.com Veteran Offline Posts: 245 x0\|st. louis\|\|\|\|\| Gender:	Re: Most hated aspect of CH Reply #46 - Jul 23^rd, 2010 at 1:10am That it interferes with my beer drinking, all the time! DAMNIT MAN!
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