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Cluster Headache Day Meeting King's College London

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#1 Sun, 15/10/2017 - 14:17
AndryaB
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Joined: 26/02/2014 - 14:26

Cluster Headache Day Meeting King's College London

A very few tickets have become available for the Meeting at King's College London on 21 October 17. If you want a ticket book now to avoid disappointment. Tickets are free but please consider making a donation to OUCH (UK). For more information and to book tickets please see the link below.

https://ouchuk.org/news/cluster-headache-day-2017

Andi

Sat, 21/10/2017 - 20:59
JosephK
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I just got back from Holburn.  Today was the first time I've been to a meeting of CH sufferers for more than 11 years and clearly a lot has happened in that time.  It was good to see some old friends (yes Colin - I mean you!)

Can I thank OUCH for their involvment in the day.  It was fascinating, informative and something I'm very glad I attended. I left with a renewed sense of hope, both for myself and all CH sufferers, old and new, and will have a lot to discuss when I next see my neuro.

Was anybody else surprised at how little is understood about shadows?  I get the sense that the whole team really want to know more about this area, yet it's something all sufferers will know lots about (in their own way, perhaps) and talk about.

There was a lady I thought I recognised that asked a question about remission and whether CH would go away eventually.  I believe she has been in remission for 15 years?  If you're reading this, do please reply.  I'd be interested to hear your story.  My CH was pretty typical for the first 8 years, until 1999.  My attacks would be very bad, severe or excrutiating.  My first 5 bouts were in the spring.  The next two in autumn after longer remissions.  My 1999 bout was my last "typical" bout, i.e. 1-3 attacks a day for several weeks; severe night-time attacks.

As things stand at the moment, my last full CH attack was 13 years ago.  My last severe CH attack was 14-15 years ago.   I've had shadows since then but no proper attacks.  My last serious bout of shadows was in 2006 and I was almost completely free of all CH symptoms from 2010 until June this year.   I'm currently in a bout of shadows, that seems to include mild attacks, but they lack most of the features of real CH attacks.  I can't believe I'm the only person to go through this sort of pattern but, as Dr Nesbitt said when I asked about low-level CH,  they simply haven't got enough people with the same symptoms yet.  I'd love to hear from anyone who can relate to any of this.

Best wishes all of you.

 

Joe

 

 

Mon, 23/10/2017 - 14:53 (Reply to #2)
bedurk
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Joined: 30/12/2016 - 16:26

Hi Joe,

Francis here. Really nice to meet you, indeed to meet other sufferers (I never had before Saturday). I was also amazed by the reaction when the shadows came up. In my case I was amazed and relieved that virtually every one of us has experienced it in some way. I've never even mentioned it to my doctor because I assumed that I was going mad - that I was just afraid that a bout was coming on, or if in bout, that I was about to have an attack - and that I was imagining it. I've had many shadows both in bout and out of bout. My first bout was Autumn 2014 and I've had bouts Spring and Autumn ever since, so hearing your stories about long remissions and bouts of shadows I find really bloody uplifting I have to say (not belittling your shadows, but I'd rather that than the full daddy, the beast as one guy put it!).

Anyway, I'd also be fascinated to hear other people's descriptions of these 'shadows'. For me it is usually a low-level pain sensation / tingling in the particular spot on my forehead where I get the severe pain in a normal attack. It usually lasts between 1 - 10 minutes (though can be longer) and usually happens leading up to or during a bout (at a different time to the normal attacks, and especially in the morning). I suspect everyone is different, but clearly we all have experienced something similar and that was a stragely heartening thing to realise! It's so hard sometimes to describe all the various states on goes through in a day of CH and it is really amazing to hear other people describe it.

I'd be really interested to know how people feel between acute attacks. ie.: say you have 3 attacks per day, do you return completely to normal after attacks? Is the transition between the attack state and the non-attack state gradual or immediate? Leading up to the attack is it immediate like an on/off switch, or do you start to feel anything before the acute pain starts? I've never heard anything about this from anyone and I'd be really interested!

The day was fantastic. Thanks to all involved!

Note to next year's organisers: maybe a session for patients to specifically ask questions of each other would be a good idea? Francis

Fri, 27/10/2017 - 13:05
Colin Allen
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Joined: 21/03/2012 - 15:19

Hi Joe, it was great to see you at the weekend,but sorry to hear that El Diablo is lurking in the background. I couldn't quite figure out why there was so much confusion with 'shadows'. My own definition of 'shadows',and anecdotal evidence gleaned after many years on the helpline,is that it is evidence that you are still in cycle. A constant background pain,usually in or around the eye,is reported in many cases. I too have gone through a full cycle without any major attacks and,quite interestingly,mild autonomic features displayed,despite the lack of a full blown attack. Cessation of  shadows often means that episodics have temporarily evicted the beast. O2,by the way,is very good for treating shadows.

Francis,I'm pleased you found the day informative. The conference was driven by King's and not Ouch,and I too found the lectures very helpful. Rest assured that an Ouch conference always includes breakout sessions where sufferers are free to exchange experiences with others and trustees/officers of the organisation.

 

A huge thanks to all our experts for giving their time once again.

Tue, 31/10/2017 - 13:50
Dorothy
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Hi all

I'm so glad everyone enjoyed the day and it's always lovely to mingle with other sufferers. The bond is not just the beast but the complete understanding of one another.

My shadows only appeared in my 60s (I just turned 70 a few weeks ago) so as far as shadows went, I had no clue what everyone else was talking about until my last few cycles. Mine are just a horrible background threat of an attack on the CH side which doesn't quite develop and really crushing pressure in my head for a few weeks leading up to full blown attacks. At the moment, I'm in my longest ever remission. I began at 19 with a few bouts a year, although it took a couple of years before I realised there was even a pattern. Eventually this reduced to one bout a year for many years and then once every 18 months for many more years. After reaching 60 I had 2 year remissions but this time I have gone well past the 2 year mark as I should have gone into cycle in February past - but so far so good... I hope to get through Christmas without a visit from beast but with the fantastic help of a demand valve for my oxygen, I don't have the crippling fear I once had. Things are much better nowadays with plenty of hope for the future. I still feel great for 70 so I hope to be around a long time to report to y'all on how long my remissions become with old age... One last point - the longer my remission, the longer the bout. If I had a choice I'd have stuck with the 18 month remissions. Last bout was 4 months, the longest ever Sad

Dorothy

Tue, 09/01/2018 - 14:44
JosephK
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Joined: 26/02/2014 - 14:04

Hi all,

I owe everybody who responded to my original post a huge apology.  Somehow I've totally missed the replies and have only seen them today.  In 20 mins I have to catch a train to catch a plane so I can't respond fully, but I have to say that the replies are amazing and there are many points I'll want to comment on when I get back from my hols.

Dorothy - "the longer the remission, the longer the bout".  I can agree to this one.  My first few bouts struck annually and were just a couple of weeks long each time.  I doubt I had more than 6-7 attacks in each (I reckon I'd be glad to go back to this again!).   Then a remission of 18 months led to a slightly longer bout but much more serious.  A 22 month remission was followed by a 5-6 week bout.

More recently, I've gone more than 7 years with hardly any CH activity whatsoever (if I've had any, I can't remember it) and now I'm more than 6 months into my worst bout of shadows ever.  And I cling onto the hope that, when (not if) it does finish, I might get a decade of serenity as payback!

 

Joe

Fri, 02/02/2018 - 15:23 (Reply to #6)
Dorothy
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Joined: 19/02/2014 - 10:16

No apologies necessary Joe - I hope you get a forever remission. Officially 3 years for me now! Never thought that would happen. Hope to see you at the conference.

Cheers

Dorothy

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