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RasIbo

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My first day here went really badly
Nov 22^nd, 2010 at 4:42pm

Today is my first day on this site and I found many cries for help from people who have had the condition for a relatively short while, I have never come across another sufferer in my life and after 25 years as a sufferer I was only diagnosed last year but still did not consider that there was any possibility of any real hope of treatment.

So when I posted what turns out to be stone aged, useless advise on how I have coped with CH I thought I was joining a group of people who were as in the dark as I have been for so long and not the clued up group of people who know more than my doctor about the condition, so apologies if I seemed a little defensive toward your initial responses or caused confusion.

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JustNotRight CH.com Sponsor Offline CH version 15.0.8 member since 2005 aka GingerS224 Posts: 1300 Wilkes-Barre, Pa (USA) Gender:	Re: My first day here went really badly Reply #1 - Nov 22^nd, 2010 at 4:56pm No worries RasIbo we were all newbies here at one time or another. Many here have been dealing with this for YEARS and have gone through a lot of trial and error. Read all you can you will most likely find out things you've never known before. Wishing you PF days and Nights!
Back to top	« Last Edit: Nov 22^nd, 2010 at 5:16pm by JustNotRight » Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or An eye for eye only ends up making the whole world blind. M.K. Gandhi If you are going through hell...Just keep going IP Logged

Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: My first day here went really badly Reply #2 - Nov 22^nd, 2010 at 5:49pm When I do stuff like that I write it off to the fact my fingers can type faster than my brain can supervise....
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George CH.com Moderator CH.com Alumnus Offline Black-Billed Magpie Posts: 8126 Boise, Idaho USA Gender:	Re: My first day here went really badly Reply #3 - Nov 22^nd, 2010 at 8:31pm It's no big deal. We were all new here once. I certainly don't think anyone took offense. As far as first days that went badly, well....I've seen worse. All the best--and welcome home. George
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bluenz

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Do what you love, Love
what you do...

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Re: My first day here went really badly
Reply #4 - Nov 22^nd, 2010 at 9:40pm

Nice to meet you
Hang around a while you'll be surprised what you will mirror around these joints Wink

we do tend to keep it real round here - you wont get far without a realistic disposition in this game
- amby pamby moaners who wont help themselves usually get kicked to the corner and whipped into shape pretty fast

we all have highs and lows
success and failures
just roll with it and us ; )

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DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: My first day here went really badly Reply #5 - Nov 22^nd, 2010 at 10:22pm Welcome clusterbrother. I'm actually sad I missed the post. It sounded interesting to say the least. Stick around, learn, share, help. That's how this place works. -Dennis-
Back to top	Where there is life, there is hope. Where there is Oxygen, you must use proper caution. So be safe, don't smoke while using O2. Kill the pain and not yourself. IP Logged

Kate in Oz

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Re: My first day here went really badly
Reply #6 - Nov 23^rd, 2010 at 5:30am

Hi,

I missed your post too, but wanted to say you're definately not the first and you wont be the last to say/do/write the 'wrong' thing. I did it when I first came here Roll Eyes

oops. But really, who cares, we're all human, and this condition aghhhh!! Sleep deprivation, depression and desparation, don't exactly make life easy Wink

You've found here a truly wonderful place, full of support and advice, stick around and enjoy!!

Kate

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RasIbo

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Re: My first day here went really badly
Reply #7 - Nov 23^rd, 2010 at 9:33am

Revelation is a wonderful thing at the right time. For me yesterday's experience was a bit like being told to close the barn door after the horse has bolted. This condition has just about destroyed my life already. Wish I'd had yesterday's experience a lot sooner.

Hey, sure I got a few years left in me, so I'm gonna give life another go. Blow the dust off, that's been gathering on the sound system and myself since the 80s and have a few revival sessions. Thank you all for your messages of support. I'll stick around. It's been one hell of a 24 hours.

Tony

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« Last Edit: Nov 23^rd, 2010 at 10:00am by RasIbo »

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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: My first day here went really badly Reply #8 - Nov 23^rd, 2010 at 9:40am I'll stick around Looking forward to that! Joe
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R33_Ian

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midlands, uk

Re: My first day here went really badly
Reply #9 - Nov 25^th, 2010 at 2:38pm

Ayup Tony, I'm from the UK in a similar situation but at the other end of the scale. I'm 26 and had my first attack about 4 months ago. I don't know how you coped unmedicated for 25 years! I was lucky and stumbled upon cluster headaches on the NHS direct site. I have been able to research like hell after being terrified by the thought of living with this condition but now after talking to these guys here I feel much more confident about dealing with it. Now I just need a doctor to help me! I had a bad experience at the neurologists yesterday and I'm back at the beginning. Luckily I am not in a cycle. I'd be interested in finding out how far you get with the medical professionals and where they are, so keep coming back.

Also if it helps, my GP gave me sumatriptan nasal sprays which abort in 10 - 15 mins and I got a pack of 6. I ordered in 12 at a time although the pharmacy didn't know you could order 6 and tried to send me off with 2 packs of 2. They didn't read it clearly enough!

Anyway, keep your chin up and keep pestering your docs.

Ian

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« Last Edit: Nov 25^th, 2010 at 2:40pm by R33_Ian »

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