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OUCH(UK) Organisation for the Understanding of Cluster Headache

Cluster Headaches on BBC1, tonight at 2100

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#1 Mon, 15/05/2017 - 20:14
DavidH 7
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Cluster Headaches on BBC1, tonight at 2100



"Doctor in the House".  Presumably repeated on iPlayer, too.

 

Mon, 15/05/2017 - 22:01
DavidH 7
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I wouldn't want to diminish anyone's pain but based on the description and treatment ... that didn't seem to be about Cluster Headaches. 

Mon, 15/05/2017 - 22:15
John S
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I feel sorry for Gemma on the programme and the immense suffering she had. 

What I felt was disappointing was apparent lack of prior research by the Doctor and also there was nothing in the programme about what treatments Gemma had had in the past for the condition.

John

Mon, 15/05/2017 - 22:29
JonathanT 2
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Hi. I was pointed to the program by my parents who said the lady was "cured".. needless to say I was very curious.. I was dissapointed with the program also. It would appear that the lady had been badly misdiagnosed with cluster headaches when it would seem that she had a muscular/skeletal tension type headache.

Some of the things the doctor was telling her to try didn't seem to have any relation to cluster headaches (or at least in my case), stress seems to put a pause on my headaches (I'm self employed and had a big job on a couple of years that just seemed to go wrong at every turn, and whilst this was happening my headaches just stopped, when the job was done I instantly got them back!).

I too was sent to a physiotherapist to check my neck and back, he couldn't find any issues other than the fact that on a couple of times I had an appointment I randomly had an attack and he noted that working on my back and shoulders didn't have any effect other than to thoroughly ruffle my feathers (his comment wasn't as polite, which in fairness to him I was quite abusive after he started - I did ask him to have a try so I apologised a few hours later).

As has been said there was no reference to any attempts at medication (sumpitriptan, oxygen, verapimal etc) being tried by her doctors etc.

It leaves me slightly worried now that when I have an attack that when I try to explain to someone who hasn't had the experience of being near me, that the reason why a fully grown man is crying and has to go into another room to take an injection and oxygen and to stop me from yelling at other people is that it's a cluster headache, they are just going to assume that I can go to a physio at get it fixed.

Tue, 16/05/2017 - 09:21
ElizabethK
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I think this just highlights how varied CH can be, what one persons experience is, may not be the same as anothers.  Sadly oxygen and injections do not work for a minority of people, we all know that a medication may work well for us but that does not mean it will work for another.  Personally I  think this lady was very brave to let the cameras in to see her at her most vulnerable to enable her to tell her story.  It is the BBC who is responsible for the editing.

Tue, 16/05/2017 - 15:16
BeverleyL
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What a sad programme. Sad for the woman but sad for the cause. It made it sound like everything could be cured by osteopathy/physiotherapy and a change in diet. Oh if only. It's so disappointing when a biased programme influences it's audience to have only half the story. What a disservice. Why wasn't a headache specialist or Ouch involved? 

Tue, 16/05/2017 - 16:37
silverdragon
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Hi. I'm glad to see that others watched the program and have posted their views. I've finally joined the group and this ismy first post!

For some background, I was diagnosed with Chronic Paroxysmal Hemicrania (CPH) by my neurologist almost three years ago. I'd been having regular attacks with no let up for about two years before being formally diagnosed. Since my attacks generally lasted around 1 hour each, and numbered around 10 per day at fairly regular intervals, I didn't present as 'typically CPH' (each attack was longer than is typical) or 'typically' Cluster (the number of attacks was more frequent than is usual). I was prescribed indomethacin to determine which of the blighters I had (CPH responds well to indomethacin whereas, typically, Cluster Headache doesn't), and *very* luckily, the drug works well for me. The pain is very significantly reduced, although I still experience regular attacks (low level burning/buzzing/aching sensations, as opposed to the awful level 10 pain I had before. Still get all the autonomic features like eye watering & stuffy nostril. Still wake up at 2:30 every night with this weird low level version of the attacks).

Definitely resonated seeing Gemma suffering so much, and I'm very glad that the treatments offered were beneficial for her (and hope it's lasting). But I did feel frustrated that they didn't give any detail about what treatments she'd had up to that point. From my (completely non medical professional!) point of view, her attacks looked very much like typical CPH; the varying lengths, including very short attacks lasting only a few minutes, the frequency (to the point where she had about 80 in one week). Even the way she tended to be somewhat still rather than pacing (although I know the symptoms and behaviours are different fo everyone). Unfortunately, because there was no mention of what drugs she'd been tried on, or any of the variables that could indicate anything other than Cluster Headache (like CPH), I can certainly see how for many Cluster Headache sufferers with more typical symptoms, it may have felt like there were unanswered questions. There certainly were for me. I saw the Dr. interviewed on BBC breakfast that morning where he mentioned that she'd been on various treatments which only made her feel worse, but, again, no specifics were given. It felt like useful/relevant information was missing from the edit that was screened which is a shame as we're all looking for something that will work for us (and dare I say, a cure?!) and information is key.  

From my own experience and what I've read across journals and support group forums, whilst this group of 'headaches' (it's sooo not a headache though!)  can be triggered by injury or other medical conditions, they're very (most?) often sudden onset and not caused by physical trauma of any kind. It was interesting to see that there seemed to be such a clear connection with a past physical trauma, and that osteopathic manipulation seed to be so helpful in her case. But, from my experience and from what others have said, it doesn't as a rule benefit everyone. I guess my concern is that it's hard enough to manage with this with out the added pressure of 'this worked for so-and-so so you must be doing it wrong/lying/making it worse' etc. There clearly isn't a one size fits all either in symptoms or in treatment.

That said, it was still a major step forward in terms of raising awareness of Cluster Headache - not to mention the impact on family life - and I agree, Gemma was very brave to let the cameras in. Good on her!

Sorry my post was so long, but it was niggling and I had to get it off my chest!

 

Tue, 16/05/2017 - 18:02
DavidH 7
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Have to re-iterate:  no criticism of Gemma intended in the slightest.

I felt that the lack of discussion about distinguishing symptoms was really problematic.  Ditto, the lack of discussion regarding treatment. 

My impression was that it was likely to be Paroxysmal Hemicrania (am not a Doctor but this was my impression) and I understand there's a specific treatment for this (Indomethican).  Without mention of this, I'm left wondering if Gemma has had the correct treatment.

Likewise, I'm surprised there was no mention of Sumatriptan or - more so - Oxygen.  Without mention of these, I'm again wondering about Gemma's treatment.

For the most part, I believe we hold some responsibility for our own health.  However, my understanding of Cluster Headaches is that nothing I do (aside from medication) is likely to stop them.  I found it really problematic that the programme appeared to suggest the diet/life-style may be the cause of Cluster Headaches.  I'm sure many of us have had to convince employers (and others) that it "just happens" and isn't caused by, say, stress or other resolvable issues. 

 

Tue, 16/05/2017 - 19:13 (Reply to #8)
silverdragon
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Hi there. Have to say that I agree with you on this; Gemma did seem to me to be a likely candidate for CPH (chronic because it was on going without remission apart from during pregnancy which does happen sometimes. Although not for me...). That's why I posted my comment from the point of view of someone with CPH. For what it's worth, I often find that I have to explain what I have as Cluster Headache because people are more likely to have heard of it (which is painfully ironic given the lack of awareness of Cluster Headache), and  'Chronic Paroxysmal Hemicrania' is a mouthful; most people's eyes seem to glaze over by the time I'm halfway through the name. Never mind trying to describe the pain and everything else.

So whilst we should assume that her neurologist has correctly diagnosed her, the lack of info on what treatments she had and other possible diagnoses left me wondering too. If she has CPH and hasn't been tried on indomethacin, she may have had years of agony needlessly (not that anyone 'needs' this). So obviously, it would help all our causes to get as much info out  as possible. That said, if the lifestyle changes work for her, that's a good thing (indomethacin is highly toxic and comes with a whole range of other issues that users have to bear in mind). But it has to be made clear that it won't necessarily work for everyone. As much as Gemma benefitted, even she wasn't cured; her attacks were reduced to a number she felt she could manage. That's very different to being completely free of attacks.

Tue, 16/05/2017 - 19:18
Harrietjt
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Hello everyone

David: Re wondering about Gemma, CH versus PH, and whether she has had the right treatment..... in the past Gemma said she had PH for many years and was on Indomethacin, so the right treatment had been tried for PH. Perhaps she has had a revised diagnosis since then, the lack of background and treatment information was indeed extremely disappointing.

Silverdragon: your post is very interesting, it really illustrates the anomalies and overlaps of the different TACs. Conditions that refuse to be put in a box. My husband is diagnosed with CCH (he has up to 10 attacks every 24 hours and length varies from 20 mins - 3.5hrs with lots of phases of background symptoms in between the attacks)

Beverley: I'm right with you, how sad for the cause and what a disservice indeed. There was no context, if a programme is made about someone with atypical CCH in which attacks are unusually short then it should be made very clear that for many sufferers the attacks last much longer and they are not bouncing up after 6 minutes in a fit state to get on with things.

The concerns about the programme are not about diminishing what Gemma suffers. 

The concern is that it was devastating for those CCHers whose attacks last for hours and destroy every area of their lives to see a programme that gives the general public a completely different profile of the condition. Like many others my husband and I spend weeks housebound during which neither of us can sleep, eat, or do anything else while the cluster beast throws him round the bedroom with only brief interludes during which his vision remains impaired and background pain continues. 

i sincerely hope OUCH will be intervening with the BBC to request the programme clarifies what CCH is and explains that sufferers are not typically ok to continue after just a few minutes of pain.

Harriet

Tue, 16/05/2017 - 20:03
Val
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Welcome aboard Silverdragon

And  may I say what a well reasoned post you made.  Poor Gemma has had a helluva time and she was done a great disservice by the editing of that programme. 

Gemma is a member of our Facebook group and has posted there a couple of times today.  She has seen many specialists and tried all the treatments both for CH and for PH as mentioned above, but has had no result from any of them.  She took up the offer of taking part in t he programme to raise awareness of CH, which is what she was diagnosed with originally.  She did this selflessly and very bravely to raise awareness of CH.   Her husband did post a few days ago saying that she had PH, but Gemma says her husband isn't quite correct as that was an old diagnosis, she herself says she has been told it is HC, but none of the usual meds work for her.  If she has obtained relief in the way she has, then I'm pleased for her. 

My criticism is aimed at the doctor concerned, he did not state h is expert sources/opinions, nor did he say what research he had read, nor did he say what treatments Gemma had tried etc.  If he had read reputable sources, he would know that CH incurable, as are all the TACs. For him to say near the end of the programme that there is no such thing as an incurable disease I thought was breathtaking arrogance on his part! 

I expressed my admiration for Gemma on facebook and so have many others.

As a point of information, OUCH was approached about this programme about 10 months ago, we agreed to check out some facts they sent to us, and we replied and in the meantime the production company changed their minds and wanted expert opinions, so we forwarded their queries to our patron.  So we did as asked and they don't seem to have bothered overmuch with expert opinion.  I think the edit was done to sensationalise things, but it has done many other sufferers a great disservice, not with misinformatio, but with lack of information.

Val. 

Wed, 17/05/2017 - 07:01
Harrietjt
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Val, thank you so much for that explanation. That is all so important for everyone to know, and will assist all who are making complaints to the BBC. 

Presumably Proffessor Goadsby is deeply unhappy about the BBC failing to provide any serious context and thereby presenting a damaging and misleading profile of CCH, given he obviously would have made it clear that cluster attacks lasting only a few minutes is not the norm and the reality is therefore extremely grim for many intractable CCHers who are disabled for hours at a time and left in a debilitated state.

I, and I am sure many other members, sincerely hope Proffessor Goadsby will now be approaching the BBC on behalf of the distressed members/sufferers, both in his role as Patron of OUCH and as the leading specialist who was consulted and then ignored by the BBC. 

This is a perfect opportunity for the Patron to use his authority to insist the BBC now set the record straight by working with OUCH and leading specialists to make a full documentary about CCH and the devastating impact to sufferers daily lives.

There really should be a programme that spells out what it is like for sufferers at the most extreme end of the spectrum, chronic intractable and often housebound. There are so many examples of utterly horrendous things that happen to sufferers that should be placed firmly on the condition profile: being dragged off by supermarket security and having to inject in public view; being arrested by the police during a cluster attack on a train, being mugged while on the floor in an attack in public, grandchildren's birthday celebrations ruined, lighting in public places triggering attacks, the list goes on and on. 

Harriet

 

 

 

 

Thu, 18/05/2017 - 13:45
JonathanT 2
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Hi.

I am glad that this thread has gained some discussion. I would also like to say that I was in no way disrespecting Gemma for her involvement in the program nor for her suffering. I too was angry with the program makers and the "doctor"..

I do really hope that the BBC and the doctor stand up and apologise for what was a totally misleading and incorrect program. There is a fair backlash on the doctors twitter feed so hopefully he gets the hint.

Since the program I have had quite a few friends mention the program to me and ask if I have tried the "treatments" on it. Ive then had to explain to them that I haven't and why.. it makes me appear to not want to cure myself in one friends eyes....

Thu, 18/05/2017 - 18:51
DavidH 7
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Twitter: @drchatterjeeuk

Fri, 19/05/2017 - 15:15
Harrietjt
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It would be really helpful if the Trustees could let members know OUCH's official position regarding the BBC's misleading representation of CCH.
 
There is no doubt that Gemma's atypical CH is hideous enough to have to live with and this is not in question. The issue is the overall damage the BBC have caused to the public understanding of what happens to a typical CCH sufferer.
 
Individual sufferers are experiencing personal backlash from people influenced by the programme into believing that the frequently housebound sufferer they know is simply lying about the length of their attacks and overall debilitating impact of the condition; and could make simply themselves much better if they wanted to.
 
Members will be reassured to know they have OUCHs full support on this.
 
Harriet
 

Sat, 20/05/2017 - 16:00
Colin Allen
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The trustees of Ouch(UK) are fully aware of the unnecessary problems caused by the obvious lack of knowledge displayed by the GP during the programme. Many pertinent observations have already been articulated on this thread.

The trustees are working on a considered and robust response to the BBC,the programme maker and the GP himself. The response will be published on this forum,together with any replies we receive.

We would like to take this opportunity to thank Gemma and her family for their efforts in raising awareness, even though they were going through a particularly difficult time.

 

Vice Chairman

OUCH(UK)

Sun, 21/05/2017 - 06:16
zanycheff
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Hi Colin
Thanks for the reply I just found it such a shame after all the good coverage on BBC breakfast etc, it beggars belief how far apart the journalistic content is between the two, maybe the response should start with the much beloved expression of Les Charlton, you know the one starting with T Smile
Zany

Sun, 21/05/2017 - 06:42
Harrietjt
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Ooh Zany, now you have those who didn't know Les curious and speculating! 

Colin and all OUCH Trustees, that is very reassuring, and thank you so much for that clarity which I am sure will be appreciated by the membership.

What a shame OUCH staff are having to expend so much precious energy on this. Thank you to all at OUCH so hugely inconvenienced by the fall out from the programme and working to re-establish the truth about CCH.

Harriet

 

Sun, 21/05/2017 - 07:12
zanycheff
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Harriet
Any good at anagrams?
STRESSO is your one Smile
Zany

Sun, 21/05/2017 - 08:27
Harrietjt
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Ha ha ....... like it. I stared at it blankly and read it out to my husband who got it immediately!

My husband has just told me this morning of backlash he has received personally from someone he has known for many years. This person hadn't seen the programme, but had seen another programme on TV discussing it it. Devastating.....this thing clearly has legs and public perception always seems to get more influenced by myth than the truth.

Harriet

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