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How old is the oldest

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#1 Tue, 17/04/2018 - 09:03
Last seen: 4 months 2 weeks ago
Joined: 26/02/2014 - 14:35

How old is the oldest


I was just wondering how old our oldest member is because I would love to think this nasty condition peters out completely.  Ever hopeful, I know, but still.  Is there a hope?  I used to have bouts every six months, for about four weeks.  Now I'm week 12 after a three year remission.  It wouldn't be so bad if I thought the remissions continued to get longer.  And it would be something to hope for if I thought they might one day just disappear altogether.


Tue, 17/04/2018 - 13:09
Dorothy's picture
Last seen: 7 hours 3 min ago
Joined: 19/02/2014 - 10:16

Have hope Maureen - I think there may be older members than me but I started with CH at 19,  I am now 70 and in my longest remission ever of over three years. The remissions got longer gradually over the years and  I was in my 50s before I got oxygen and some relief from the pain. That took the fear out of it, so nowadays I count myself very lucky. Think how much better things will be in the future...

I always like to add that I managed to fit loads of fun and happiness into my life. I think we sufferers are pretty good at making the most of the good times.

All the best



Thu, 19/04/2018 - 10:11
Last seen: 4 days 14 hours ago
Joined: 21/03/2012 - 15:16

The oldest sufferer I have come across was a gentleman in his nineties.  There is some anecdotal evidence to say that as you get older they episodes [bouts] become shorter and the attacks can lessen in number and be less severe.  But unfortunately it is a lifelong condition. 

There is hope for us at the  moment in the trial of CGRP in treating CH.  It has recently been approved for use in migraine following excellent trial results and we are hopeful that there will be a similar outcome in regard to the same treatment being used for CH.  it would involve an injection once a month - how great would that be!  There is also research going on into a genetic link in CH.  Identification of a particular gene causing or carrying CH would mean there is better diagnosis and who knows a treatment developed to change/ mutate that gene to behave itself and not kick off CH!   So yes there is hope but in many directions.


Thu, 05/07/2018 - 09:57
Last seen: 1 year 2 months ago
Joined: 27/05/2017 - 17:40

I had my first episode at 72 and am now 76. I get an episode once a year in spring. (except I had a series when attempting to start Statin treatment, every time I started a statin it brought on CH and they stopped when I stopped statin, this sequence repeated twice so it was clear that statin was the cause of these non-spring episodes.

Tue, 24/07/2018 - 12:12
Last seen: 4 days 14 hours ago
Joined: 21/03/2012 - 15:16

Oldest sufferer I have come across was 88 and youngest 1 year.  There is some evidence that the attacks/bouts get milder/shorter as you age.   

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