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#1 Mon, 12/10/2015 - 12:30
Icolana
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Introduction

Hi, I've been using this forum on and off for around 14 years but under lots of different user names as I constantly forget things. I've thrown a bit of a strop at the Facebook page and decided to use the forum again.

Im 36 years old and have had ch since around 8. I've been diagnosed for around 13 years now. I can lay down while having a mild attack, there's a big long reason why I do that.

I am ech and missed my last bout in December so assuming my pattern is changing again. I mainly use O2 and steroids but have now changed some meds and will have everything for my next attack.

Ouch helped to keep me alive a couple of times, all those years of not knowing ended when I found ouch and I would never want to give up on being involved. I am attending the conference this November, it will be the second one ever and I'm so looking forward to it.

 

nicky

Mon, 12/10/2015 - 12:58
darren h
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hi nicky, good to hear you found ouch and its members so useful, and i know what you meen about being a life saver, i was in a bad place last jan, cch 7 years and little info or help from my gp in all that time i suffered work and home life, now ive got my answers ansered lifes good again, still get plenty of attacks but ive now come to terms with this condition the pain and the unpedicktability of my life now, so now its if i can when i can, and when i can i live life to the full, so meny attacks in the same bedroom now i like an attack with a different view if im gona have one any way, as you should know theres some good pepol on he fourm so ay probs questions or your just down, reach out and ask we all share the same pain and poblems, all the best dh  

Mon, 12/10/2015 - 14:45
Icolana
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Hi Darren, thanks for replying. I'm sorry to hear you have ch but pleased to hear you are a fighter Smile

Mon, 12/10/2015 - 15:10
darren h
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hi yess indeedy, lifes good verry good its just not easy, im a biker and love to ride, ch makes this hard but not impossible, i should be at the nov conference look forward to meeting you, i be the scruffy one with the smile, d

Mon, 12/10/2015 - 16:57
Icolana
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Ha! I'll be the really grumpy one lol. I'm really looking forward to it, I went to one years and years ago and was just in awe of meeting so many people with the same weird condition I had. I spent so many many years thinking I was the only one. I'll keep an eye out for you. 

Tue, 13/10/2015 - 00:14
Harrietjt
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Hello Nicky,

How bloody awful to have CH as a child. My husband Pete (CCH since 2008) was past 50 when it started and we are always sad to hear of those for whom it starts young. At least we got half a century in before we even knew there was such an extreme and bizarre condition!

Glad ouch has helped you as it has so many.......vaguely wishing I knew how the heck to use Facebook to have a peek at your strop!

I will be at the conference too, maybe with Pete....in which case I'll be somewhere around two scruffy ones...cos Pete will be with Darren. Or maybe without Pete cos he gets so CH freaked by travelling. Anyway hope to meet you there.

Harriet.

 

Tue, 13/10/2015 - 16:12
Icolana
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Hi Harriet! I used this forum for years but used to disappear when out of bout but found it easier to keep connected via Facebook. Recently there has been a growing negativity and various posts that I've found have really irritated me but as I said on my post that is my problem not everyone else's :-). 

i often think how awful it must be for people that are older when suddenly hit by CH. it's so debilitating and the horror must be terrible. Having CH young meant that I didn't really know any different, the funny headaches I got as a child just became more and more. I think I cope with it slightly differently due to this.

i will look out for you all Smile xxx

Wed, 14/10/2015 - 10:55 (Reply to #7)
Dorothy Trustee
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Hi Nicky

How awful to start at such a tender age with CH :( I'm pleased to hear you'll be attending the conference as there's nothing to beat mingling with all those who share the same condition - not that we would wish it on anyone but it means you are among people who know and understand exactly what you go through - plus you get to hear about all the latest treatments from the top medical experts who are battling to help us on a daily basis.

The facebook page and group reach so very many people who need help and support - think of the amount of people who check into their facebook many times daily.  It really isn't all negativity in the group.  There's a lot of support and cameraderie going on. We need to be thinking of awareness too and facebook offers us a great opportunity to share and spread the word and also to point people towards our website. Harriet, why not click on the link to the left and have a look for yourself :)

Dorothy

 

Dorothy (Trustee)

Wed, 14/10/2015 - 13:49
Icolana
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Hi Dorothy, I wholeheartedly agree with you and I think it's brilliant that so many people are helped by the FB page. I found it useful to keep up to date with things easily but think going back to the forum is the best move for me at the moment.

i am very excited to attend the conference as it's been over 10 years since I've been to one. When I attended years ago I had no idea that perfume could trigger an attack and felt so awful that I affected someone sat next to me and spent 20 minutes trying to was the smell off Smile

i am lacking information on some of the treatments that are available such as the devices, I'm aware of most medications, so really hopeful I'll come away with a better understanding of those.

 

xxx

Thu, 15/10/2015 - 15:45
Tonythetiger
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Hi Nicky, I'm fairly new to having chronic SUNCT and CH, and the attacks and medication side effects drive me mad.  I can't even imagine how it must have been for you for so many years.  Have you found any treatment that helps reduce them at all? 

anyway, I'm going to the London conference too, so I'll probably see you there.  It's the first conference my girlfriend and I have been to so we aren't really sure what to expect but we are looking forward to it 

Thu, 15/10/2015 - 20:04 (Reply to #10)
darren h
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hi tony, hows you getting over your last hosp treatment? one thing you can expect at the confrence is a warm welcom from me an harriet at least, if pete cant make it she may be on the back of my bike that should be fun looking forward to meeting up again d

Thu, 15/10/2015 - 22:16
Harrietjt
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Really glad you are coming Tony, be so nice to see you again and will be nice to meet your girlfriend. 

Its my first conference too....looking forward to it.

H.

Sat, 17/10/2015 - 20:10
Tonythetiger
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Hi Darren, I'm ok after hospital. Well not fine, but you know.  Nothing's changed really.  I look forward to seeing you and Harriet and Pete if he can make it 

Sun, 18/10/2015 - 18:14
Icolana
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Hi all! I use mainly O2 for my ch. I've not been able to use injections in the past due to interactions with other meds I was on. I've now come off those meds and so will have the injections for my next bout along with verapamil etc. I do use steroids but in the past I've tried to save them for when my ch are at their worst but have been told I have to take them straight away next time, they never abort my bout but they do ease it off for a few days.

im really looking forward to seeing you all Smile

Mon, 19/10/2015 - 19:18 (Reply to #14)
darren h
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hi ive got the o2 and injections thay work well, so much better than the nose sprays i use to use, also steroids when ch bad i find them hit an miss as whether thay work, im cronik so regular pattern, its gona be a good meet up at the confrence for sure d

Sun, 01/11/2015 - 06:01
Icolana
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Omg it's so early! I'm going to forget who you all are I'm sure, my memory is terrible. I hope I see you all and hope everyone has a brilliant day xxx

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