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Katherinecm CH.com Sponsor Offline Posts: 432 Des Moines, IA, USA Gender:	Most hated aspect of CH Jun 6^th, 2010 at 2:11am What's the one thing you hate most about having CH? The pain? The people who try to offer "cures" or say they understand because they had one once? Mine: Days like today, when I've had so many hits I'm exhausted but it hurts too much to lie down.
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Skull Buster

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Re: Most hated aspect of CH
Reply #1 - Jun 6^th, 2010 at 2:18am

that sucks. I've never had more then 2 hits in one day before. I feel lucky i guess. I don't even tell people i get headaches anymore. I just tell em I been sick in bed. They dont understand. I had a fool tell me yesterday that bto get rid of my headaches to roll my eyes back and forth and up and down. LOL I was like "Really, I can't wait to try that." You just saved my life!!! Dumbass. Grin

hope you feel better soon Wink

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Billie

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Re: Most hated aspect of CH
Reply #2 - Jun 6^th, 2010 at 6:34am

I don't think I've ever had more than 2 hits in a day, and I know 1 is enough for everybody. I hope you find some relief soon. Before I was actually diagnosed with cluster headache and nothing would kill the pain, I always hated that hopeless feeling. I knew when to expect another headache and knew there was nothing I could do about it, and I began to feel like maybe I was going crazy. My family doctor once told me Cymbalta should be helping my headaches. I just smiled and thought, "Yeah, doing a great job," and knew what he was hinting at.

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Bassplayer Jim CH.com Junior Offline Posts: 43 Pennsylvania Gender:	Re: Most hated aspect of CH Reply #3 - Jun 6^th, 2010 at 8:51am Wish there were only one thing. The "discomfort", the timing, the rapidity of onset, the sheer numbers per cycle, the length of cycle, the impotency of pain medication, etc.
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anthony g CH.com Old Timer Offline I Love CH.com! Posts: 318 manhattan nyc Gender:	Re: Most hated aspect of CH Reply #4 - Jun 6^th, 2010 at 8:58am that they exist!
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Most hated aspect of CH Reply #5 - Jun 6^th, 2010 at 9:08am The state of mind it puts me in while constantly looking over my shoulder to find out when my number has come up on the dance card. It sure can get in the way of living a "normal" life. The pain is secondary to this.
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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 #6 - Jun 6^th, 2010 at 9:27am The time lost I can never get back. Joe
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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 #7 - Jun 6^th, 2010 at 10:47am i hate driving through chicago in a semi truck while i get repeat attacks. talk about being scared. and i like chicago
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Most hated aspect of CH Reply #8 - Jun 6^th, 2010 at 12:22pm -johnny- wrote on Jun 6^th, 2010 at 10:47am: i hate driving through chicago in a semi truck while i get repeat attacks. talk about being scared. and i like chicago So you'll be cheering for the Blackhawks tonight then, right?
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Re: Most hated aspect of CH
Reply #9 - Jun 6^th, 2010 at 1:31pm

Katherinecm wrote on Jun 6^th, 2010 at 2:11am:

What's the one thing you hate most about having CH? The pain? The people who try to offer "cures" or say they understand because they had one once?

Mine: Days like today, when I've had so many hits I'm exhausted but it hurts too much to lie down.

Katherinecm I believe it would be all of the above. I just hopefully finished a cycle that lasted about three days. Today pain free (fingers crossed)!
Hope you start feeling better soon.

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Most hated aspect of CH Reply #10 - Jun 6^th, 2010 at 1:48pm neetnut wrote on Jun 6^th, 2010 at 1:31pm: Katherinecm I believe it would be all of the above. I just hopefully finished a cycle that lasted about three days. Today pain free (fingers crossed)! Hope you start feeling better soon. A cycle that lasted three days?
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Jim L CH.com Sponsor Offline I Love CH.com! Posts: 84	Re: Most hated aspect of CH Reply #11 - Jun 6^th, 2010 at 2:11pm Dealing with co-workers, friends, and even family who "get tired of hearing about it all the time." On top of the excruciating pain, I lose patience with these folks (but I have to keep my job!).
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Jim L CH.com Sponsor Offline I Love CH.com! Posts: 84	Re: Most hated aspect of CH Reply #12 - Jun 6^th, 2010 at 2:11pm Dealing with co-workers, friends, and even family who "get tired of hearing about it all the time." On top of the excruciating pain, I lose patience with these folks (but I have to keep my job!).
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Headache Boy uk CH.com Old Timer Offline Matthew ch 11 v 28 Posts: 373 Mersea Island nr Colchester Gender:	Re: Most hated aspect of CH Reply #13 - Jun 6^th, 2010 at 2:53pm Well every thing really but especially my loss of patience with everyone and that damned annoying twitchy eye thing , whats that all about ??? Nigel
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black CH.com Old Timer Offline I Love CH.com! Posts: 347 Greece,Athens Gender:	Re: Most hated aspect of CH Reply #14 - Jun 6^th, 2010 at 5:55pm that although it is tearing apart inside,body and peace of mind,it leaves me to appear just normal outside.
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Headache Boy uk

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Re: Most hated aspect of CH
Reply #15 - Jun 6^th, 2010 at 7:56pm

Oh yes some thing I really hate about CH that I forgot to mention earlier is coming to this board and finding a post from some thingy trying to tell us how there most utterly ridiculous idea can "cure" us Angry

Nigel

edited to add :" some thingy " is not what I wrote but the board obviously took exception to what I did write so may be it should have read ... some silly person.

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« Last Edit: Jun 6^th, 2010 at 8:00pm by Headache Boy uk »

You can't speak a kind word too soon, For you never know how soon it will be too late.

Some people cause happyness wherever they go, others whenever they go

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George

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Re: Most hated aspect of CH
Reply #16 - Jun 6^th, 2010 at 8:23pm

I think I hate 'most everything about it. On the other hand, there's nothing better than the end of a cycle. It's like summer vacation has arrived when you're ten years old.

Headache Boy uk wrote on Jun 6^th, 2010 at 7:56pm:

Oh yes some thing I really hate about CH that I forgot to mention earlier is coming to this board and finding a post from some thingy trying to tell us how there most utterly ridiculous idea can "cure" us Angry

Nigel

edited to add :" some thingy " is not what I wrote but the board obviously took exception to what I did write so may be it should have read ... some silly person.

LOL, Nigel. This isn't the first time that the differing British and American definitions for...um...thingy have caused someone's post to come a cropper, due to the board censor software. Grin

Best,

George

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« Last Edit: Jun 6^th, 2010 at 8:24pm by George »

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donna mae CH.com Junior Offline I Love CH.com! Posts: 67 Bolingbrook, Il Gender:	Re: Most hated aspect of CH Reply #17 - Jun 6^th, 2010 at 8:36pm For me, I hate everything about it. It's become a life consuming problem. I'm still trying to find treatment to rid this beast in my head. I will prevail! Donna Mae
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Layla328 CH.com Hall of Famer Offline Posts: 804 Boston Gender:	Re: Most hated aspect of CH Reply #18 - Jun 6^th, 2010 at 9:20pm Hmmm....can't decide between the pain or sleep deprivation? Hang in there--I get multiple hits too when in cycle--at night mostly. It'll wear you down. Hope you get painfree soon.
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shaggyparasol

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Re: Most hated aspect of CH
Reply #19 - Jun 6^th, 2010 at 10:08pm

How about the other question? What is your favorite thing about the CH? Mine is the feeling as I am bending over after 40-50 minutes, digging my fingers into my skull, finding the sweet spot that helps with the pain and then I feel the first release of the pain.......pain back on.......release again and then I know it is on its way out for now. Then that sweet feeling of exhaustion but no pain as I lie on the floor thanking the head-gods that my pain is gone once again for the day.

Now that feels good! Kiss

--Shaggy

ps, I am not one of those glass is half full or whatever type of guys, I'm just sayin'.

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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 #20 - Jun 6^th, 2010 at 10:36pm Oh Shaggy........I've tried to explain to people that until they've felt the end of a cluster attack...they will never truly appreciate how good....GOOD feels! Joe
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shaggyparasol CH.com Veteran Offline I Love CH.com! Posts: 192 Portland, OR Gender:	Re: Most hated aspect of CH Reply #21 - Jun 6^th, 2010 at 11:40pm True indeed good sir, true indeed! --Shaggy
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Katherinecm

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Re: Most hated aspect of CH
Reply #22 - Jun 7^th, 2010 at 12:28am

yeah, how good GOOD feels really resonates with me. even when I've been getting nearly nonstop (45 minutes on/45 minutes off) hits for... what am I at? 10 days now? I've lost count. and even though I'm utterly exhausted in between, it feels SO GOOD to NOT be in pain!

the other day the new guy I've been flirting with said I was one of the happiest people he knew (of course he's only spoken to me once when I was getting a hit and we got off the phone quickly). my only response was- when I'm not in pain, what is there to not be happy about? in comparison everything else is cake.

I do wish I had someone to take a roadtrip with me though. If I felt better I'd take one on my own, but right now I'm just not capable except when I'm on pain medicine, and when I am I don't want to drive.

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"We are not human beings having a spiritual experience. We are spiritual beings that have a human experience." Teilhard de Chardin

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neuropath

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Re: Most hated aspect of CH
Reply #23 - Jun 7^th, 2010 at 5:19am

Good also is the first virtually PF day in the past 2 years that I have had in the last 24 hours; without any meds!!!!

Went through a chronic bust with Psilocybin and although the detox period and the periods between dosages were ROUGH to say the least, I am now slowly beginning to remember what pain free feels like. Early days but I am feeling better than I have in a long, long time. It feels GOOD!

In your situation I would read up on alts. Busting a chronic condition is seemingly a lot tougher than an episodic one and over the past 4 weeks I have often thought of giving up. Notwithstanding, there is no doubt in my mind that the shamanic way is working in the end, if you see it through.

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seasonalboomer CH.com Hall of Famer Offline CH messes with my isness Posts: 2517 Charlotte, NC Gender:	Re: Most hated aspect of CH Reply #24 - Jun 7^th, 2010 at 8:47am The feeling of a lack of control over my life; that my life is not my own during cycle. The result is a disconnection from the things in my life that are important to me when I'm in cycle.
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