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OUCH(UK) Organisation for the Understanding of Cluster Headache

Just Wondering?

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#1 Tue, 04/07/2017 - 19:08
hoops
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Just Wondering?

Hello,

I’d like to ask a question for anyone out there that may have had a similar situation.

I’ve suffered with CCH for some 10 years now; like many others it took some time for the correct diagnosis but here I am.

I’ve had so many absolutely epic attacks over the years and was eventually put on Verapamil which for me was a miracle drug and changed my life. This is until I reached the maximum dosage after a few years and things started to go sideways more frequently.

So off I went back to see the specialist who told me I could start a trial for some new treatment which I agreed too (we are at the beginning of March 2017 now), I jumped at the opportunity to be honest!

Now, the Dr told me before I start the trial I would have to flush my body of all medication except my oxygen, (promise there is a question coming) I agreed knowing what the consequence of this meant and started to reduce weekly. The headaches became more frequent and vicious as I knew they would but with the hope of something new on the horizon I stuck at it (big picture and all).

Where is this question? Coming honest. Now towards the 3rd week of April my attacks started to weaken (not started the trial yet remember) I was getting 2-3 attacks a day but these were nothing compared to what I’m used to so a gift for me.

I didn’t know what to do, how long would this last? I didn’t even want to tell anyone or talk about it in case I jinxed it! So my question is…about time I hear you shout!

As anyone else had a huge reduction in pain from their attacks over a long period of time like me, what happened next? Did it stay like this or did you return to normal jogging with epic attacks or did they get even weaker or dare I say stop?

Clutching at straws here but I’ve never actually met another sufferer so I thought I’d just throw it out into the forum.

Thanks in advance to anyone who may want to share a similar experience.

Cheers and keep the chins up, Cluster sufferers know how to battle hard!

Andy.

ARH

Wed, 05/07/2017 - 09:44
Val
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Andy, how old are you?  There is a valid reason for asking!

 

Val

Wed, 05/07/2017 - 17:12 (Reply to #2)
hoops
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Hiya Val, i'm 51

ARH

Wed, 05/07/2017 - 17:12 (Reply to #3)
hoops
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Hiya Val, i'm 51

ARH

Thu, 06/07/2017 - 13:09
Val
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Hello again,

The reason I asked is that CH can slow down as you age and you have less attacks and they are not so severe.  It is not guaranteed that this can happen, but it may be that there is a coincidence between your body 'flush out' and - ahem - your age! 

I know of at least one person in his sixties at the time, a CCH sufferer, whose attacks started to calm down and he wasn't getting so many of them.  He slowly reduced the verapamil he had been on  until he was completely off it.  He h ad a long period of being attack free, but he does still have occasional attacks. 

But as we all know, CH is the closest thing to a designer disease, no two people have the same reaction to a preventive or abortive, the only common thing is the excruciating pain!  So I'm afraid it is how long is a piece of string!

Val.

Thu, 06/07/2017 - 17:14 (Reply to #5)
hoops
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Hiya Val,

Thanks for responding, very interesting and no one has ever mentioned this as a possibility before.

I agree about the designer disease and I'm just very grateful for the way I'm feeling at the moment.

So it's fingers crossed for me and hopefully I'll end up in the same boat as the other chap, for now I'll take what I can get but i'm afraid i'm no optimist when it comes to CCH.

Anyway thank you so much for taking the time to reply, very grateful and any glimmer of hope is better than none so i'll hold on to it.

Take care and thanks again Val.

Andy.

 

ARH

Fri, 07/07/2017 - 10:02
Val
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My pleasure Andy.  And I hope for a long PF period for you, preferablyl an endless one!

 

Val.

Mon, 10/07/2017 - 12:04
Ihpatterson
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Yes, there is evidence that CCH slows or departs completely with age over 50. However the description "designer" disease is appropriate as I first started an epsode of CCH in the May of my 72nd year! Late-unset CCH is rare, fortunately I only get an episode each May- except when my GP finally, against my better judgemet, persuaded me to go on a statin although my LDL choresterol was only in the high end of nomal.

Well, after 3 weeks my liver function test came back very abnormal (happens with 1% population) and I stared CCH outside of May. Stoppng the statin immediately stopped the CCH.The normal procedure is a rest of no statin for 2 weeks and if the liver function test is returned to normal, retry the statin. I did this and the CCH retuned so I immediately stopped the satin apon which the CCHs stopped.

Has anyone heard of any connections between statins an CCGH?

Apologies fo spelling errrs, I typefaster than it ntersin the box, so I haveto go back to ente the missing lettes!

I.H.Patterson

 

Mon, 10/07/2017 - 14:22
malcolmmole
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i suffer chronic cluster (lucky me) as well as migraines etc..... the migraines started after phenol poisoning 30+ yrs ago and are worsening with more and lower levels of trigger.... the clusters started in the early 80s as spasmodic but became chronic 20odd years ago... it was only this year that a "label" was hung on it.

I've recently had to come off propanolol after 30yrs in order to try verapamil... the gap has widened as my new doctor is on holiday and I couldn't make the last appointment because I was in 5 days of massive migraine and unable to walk properly (the few miles drive to the surgery was a no-no) caused by the ECG.

oddly my clusters have greatly reduced and reacting marvellously to oxygen.... weird!!.. since coming off the beta blocker

Unfortunately both migraine and cluster are returning.... i'm back up to 2 or 3 clusters some days... but it's still better than it was.

I expect to start verapamil in about a week and hope it helps.

 

as a "besides" I was made significantly worse by insistance I took crestor (a statin)... it made my clusters massively worse and very ill... I still can't pick up a bag of flour a fortnight after refusing to take any more.

malcolmmole

Fri, 14/07/2017 - 14:57
JosephK
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Hi everyone.  I've been away for a while!  But this is an interesting thread that I think I can add to.  I haven't got time to post something now but I'll do it over the weekend.  Joe

Sat, 15/07/2017 - 07:21
JosephK
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I've been somewhat reluctant to post in case the beast hears me and punishes my cockiness!  But as things stand at the moment, I haven't had (what I'd call) a genuine CH attach for more than 13 years.  Genuine to me means something that I know is an attack and that is debilitating if not treated.

During my last typical bout, which was in 1999, I certainly had some dreadful attacks (usually the night time ones) but many of my attacks were mild.  I didn't have anything to treat my attacks with back then so I felt the full force of the bad ones.  Shadows also became more of a problem.  In previous bouts, I was either having an attack or I felt fine, save for the few hours after the attack.  But during the worst of the bout in '99, I seemed to be in constant pain of varying degrees.

SInce 1999, I reckon I've had just 5-6 proper attacks with the last one in March 2004.  I used verapamil for short periods in 2002, 2003 and 2004 so it's possible I would have had more attacks without it.  I took verapamil for a period of several years between 2004 and 2008 also.  I was classed as CCH but I doubt that I was.  I didn't have any attacks, for a start!  And I've never had an attack while taking verapamil.  

However, since 2000 I have suffered with bouts of shadows.  These bouts can last a few days or many months.  During these bouts, I have definite "attacks" of a kind.  I feel like they are CH attacks breaking through but they are extremely mild. They probably wouldn't even register on the KIP scale and they are normally few and far between.  I don't take anything for them and they tend to last up to 4 hours followed by the shadows I'd expect after a full attack.  I call them phantom attacks.

I've had lots of bouts of shadows.  I don't always get these phantom attacks during a bout but normally I'll get one or two.   Sadly, at the moment I'm going through a new bout of shadows - the first for several years I think and probably the worst I've had - and I'm having regular phantom attacks.  They feel worse than in the past and I think the beast might have found me again after all this time.   I do recognise how lucky I've been when I read about other sufferers' experiences but I'm still feeling pretty rubbish at the moment.  I'd started to believe they'd never come back.  I'm three weeks into this bout and only time will tell whether it'll fizzle out into nothing ,as they normally do, or whether it'll worsen.  But in conclusion, I'd have to say that my attacks seem to have become milder as I've aged.

I'm going to add a separate post with more details on my history in case anybody else can relate to it.

 

Sun, 16/07/2017 - 12:42 (Reply to #11)
hoops
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Now then Jo,

Cheers for your comments, it's good to hear that I'm not alone and promising for the future hopefully. I also didn't want to rock the boat so to speak by talking about it, I'm just thankful for how I am at the moment and fingers crossed it continues to move in the current direction.

I suppose I'm the same calling the majority of what I now get as shadows however I have had a few recently that I thought were heading in the wrong direction but seemed to fall off within 20 mins or so. Oxygen is currently my main support and normally works a treat.

I am on a trial at the moment but it's early days and believe I'm on the placebo as nothing in the slightest has changed with my condition and strength of the attacks. Still getting two to three a day but as I say they are a gift at the moment. I'm trying to say that I'm glad I'm on the trial because without it I would not have come off the verapamil and things could be the same as they were.

So hopefully there are more comments from others, not definitive as we are all different but may give others some hope for the future regardless of our individual type of treartment we take.

Cheers Jo and I'll keep it quiet, hopefully no one heard us anyway!

Go steady.

Andy.

 

 

ARH

Sun, 16/07/2017 - 12:47 (Reply to #12)
hoops
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Thank you for your response to this thread, weird no one has every mentioned the slowing down with age as a possiblity during all my years of treatment but suppose we are all different.

Thanks again.

Andy

ARH

Sun, 16/07/2017 - 12:56 (Reply to #13)
hoops
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Now then Malcolm,

Cheers for dropping a line on the topic, sounds like you've been in the wars with all this. Good to hear though that they have reduced in severity.

Oxygen works well for me also but itsn't odd how we all react to the same treatment differently, just a unique illness with so many combinations and factors involved.

Thanks for adding to the thread and hope things continue to get better for you.

Cheers,

Andy

ARH

Sun, 16/07/2017 - 18:11
Harrietjt
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Hello all,

This is a very interesting thread. In relation to the blissful idea that CH can reduce/disappear with age....I'd like to understand a bit more about who that happens for. Does this happen for both ECH and CCH? And does it make a difference what age the CH started at?

I'm curious because of the over 50 thing. My husband started intractable CCH age 53 and it is getting steadily worse. We have a few intractable CCH friends who also had their first cluster attacks when over 50 and are getting worse. So have those for whom it improves had it from much younger? And did they too have many years of it getting worse before reaching the years of improvement? And does it ever go away for intractable sufferers, or only those who have been treatment responsive?

Everything I hear about CH seems to raise so many more questions than it answers..... it is such a bizarre condition. 

Harriet

Mon, 17/07/2017 - 09:48
JosephK
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Hi Harriet,

Did your husband have any CH in the past or did it start in his 50s?  It was once thought that CH only began in older people, but that was probably partly due to the length of time most of us used to wait until we were diagnosed.  I was 18 when my first bout hit.  My own experience is obviously different in that mine started when I was a lot younger and mine were definitely ECH.  I was once classed as having CCH but I wasn't having proper attacks so it seems wrong looking back.  If I look at the whole of the last 25 years my pattern is definiltey episodic.

I hope things improve for him.  Same for you Andy.

I don't know what to make of this current episode. It's the worst I've experienced for more than a decade and yet I still haven't had a serious attack.  The pattern at the moment seems to be a mild "attack" every three days with constant shadows at all other times.  The attacks last 3-4 hours but aren't serious enough to warrant treatment.  Normally when I get these bouts of shadows (which is every 18 months or so) I get perhaps one or two of these mild attacks but never this many.  It's still nothing compared to the old days but the fear is always there that it's going to worsen.  Only time will tell I suppose.

 

 

 

Wed, 19/07/2017 - 11:09
Val
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Ladies and gents, page 8 of the OUCH 'Guide to Cluster Headaches' booklet, final para: "  A very encouraging piece of information for sufferers is that many of them can expect to develop longer periods of remission as they get older."   

I've tried to find a citation to confirm that, but still searching!  I do recall a doctor saying something similar in a presentation way back in 2003.

 

Val. 

Sun, 23/07/2017 - 13:29 (Reply to #17)
hoops
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Hello Harriet,

I was only 41 when I started with CCH so i'm only pushing into my 11th year now.

I have also been informed by my specialist that it is not unheard of for a CCH to change over to ECH over time, it's all really complex and indeed a bizarre condition were no two seem to be the same!

Thanks for keeping this thread going as it is very interesting to hear about others experiences on the subject.

Thanks,

Andy.

 

ARH

Mon, 24/07/2017 - 08:29
Harrietjt
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Hi all,

No, Pete had no previous history whatsoever of anything remotely Cluster like. When he was 52 we had the shocking experience in the September of him leaping out of bed writhing in agony for no apparent reason every night at 1.30am, this lasted 6 weeks. 

So, 2 teeth removed, it stopped and we forgot all about it, little realising what we thought was a horrific dental related episode, was actually a teeny weeny foretaste of something unimaginable that would return to destroy life as we knew it.

The following September he leapt out of bed at 1.30am in agony, and we realised that spookily this had happened at exactly the same time the previous year. Told a friend, who luckily for us said 'I think I know what that is, sounds just like Cluster Headache'. Thank God she had seen it on a TV programme. 

Pete was Chronic from then on, for a while it was 1 attack every night, then day time attacks started to appear. His work was based at home so we naively thought he would always be able to continue around the condition. However a couple of times a month he had to make long journeys to meetings, so then came the attack on a busy street in London where he realised the full implication of being alone, visually impaired, and without speech.....and a catalogue of other such incidents. It steadily progressed and he now has up to 11 attacks a day, and for a lot of the time Is  visually impaired between the attacks. Screens and reading are amongst his attack triggers. He has a very strong Episodic influence within the Chronic, there is an ebb and flow of aggressiveness which we see in the attack frequency, intensity, length, and triggerability. Year by year progressively worse.

Val, thank you for looking for a citation.... some sort of stats would be very useful. Anecdotal info is really interesting, but I do think some sort of quantification is important for a realistic picture. In the past I have heard it said on the radio that the good news is it often disappears as people get older. This was not balanced with any acknowledgement of the sufferers that have to endure it until the end of their days and so in effect unintentionally trivialised CCH. The burning question is...how statistically likely is it? And does it happen in all manner of CH presentations and histories, or for a particular group on the spectrum?

Very best wishes to all

harriet.

 

 

Mon, 24/07/2017 - 08:39
Dorothy
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Hi all

I can add to this thread. I was 19 when I first suffered with CH. I got two cluster bouts a year of about 6-8 (sometimes longer) weeks. After many years, this reduced to one bout a year in the autumn. After more years went by, the remission period extended to once every 18 months. This continued until I was 60 and since then remission has been lasting for two whole years! I'll be 70 in October. My two year remission should have ended in February but didn't! So I'm a loose cannon but a happy one - I'll let you know how long I get....

Dorothy

Mon, 24/07/2017 - 16:49
Harrietjt
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Dorothy that is really interesting. So you started really young, remained episodic, and remission length is increasing with age. Be really interesting to gather profiles of other cases that improve with age to see if there are any common factors or it is totally random. And what proportion of sufferers get the improvement would be worth knowing.

Harriet 

Tue, 25/07/2017 - 10:51
Val
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Started age 10, undiagnosed until 51, by then chronic and remained chronic, am now 66.   Stayed at constant level for the last 9 years.

Val

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