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BBC Documentary 'Cluster Headaches' (Read 4316 times)
Georgewhufc
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BBC Documentary 'Cluster Headaches'
May 16th, 2017 at 5:41pm
 
Hi all

Largely PF since around November 16 after my first cluster started in July 16, hence my absence from the board!

I just thought I'd share the below BBC documentary that follows the story of a GP visiting someone who we're told is a sufferer of CH.

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It's on the BBC iPlayer so those not in the UK may have issues accessing (I'd never suggest you use a VPN or similar to access Wink)

What do we think?

I've seen a lot of coverage on this on Twitter including complaints direct to the doctor in the series, about how this is clearly Chronic Paroxysmal Hemicrania (CPH) rather than CH.

I was also frustrated at the lack of mention of the 'standardised' medication we're offered for CH (Triptans, Oxygen etc.) and whilst they did suggest a Vitamin addition to her diet, no mention of Batch's superb D3 Regimen!!!

Incase you can't view, it turns out that she suffered some neck trauma in a car accident which they put these attacks down to, so again not always consistent with 'usual' CH diagnoses.

To me it just reminded me that CH is easily misdiagnosed, and it sadly frustrated a lot of UK CH sufferers on social media who felt the programme mis-represented them.

Let me know your thoughts!

Thanks
George
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Mike NZ
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Re: BBC Documentary 'Cluster Headaches'
Reply #1 - May 16th, 2017 at 6:57pm
 
For people outside of the UK without access to iPlayer, there is an article linked to the programme in the Radio Times which is a tv listings guide.

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For info on CPH, the following is a good overview:

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It is easy to see how they can be confused when purely looking at the symptoms, however the increased headache frequency is a good indicator.

It also highlights the complexity of getting the correct diagnosis and treatment when even on a TV show that is really focusing on one person that there is doubt over the diagnosis and the standard CH medications are not mentioned.
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AussieBrian
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Re: BBC Documentary 'Cluster Headaches'
Reply #2 - May 16th, 2017 at 10:55pm
 
Mike NZ wrote on May 16th, 2017 at 6:57pm:
It is easy to see how they can be confused when purely looking at the symptoms, however the increased headache frequency is a good indicator.

Another good indicator is Indomethicin which works wonders for CPH but does little for CH.

In fact, I've long wondered if a 7-10 day course of Indo shouldn't be considered as a diagnostic tool in picking one nightmare from the other.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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Georgewhufc
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Re: BBC Documentary 'Cluster Headaches'
Reply #3 - May 17th, 2017 at 7:39am
 
I agree it would make sense for a course of Indo to rule out either way - why is this not more common?!

I think what really upset people about this documentary was that the differences were not even suggested, let alone made clear.

And then to not even mention the more 'traditional' treatments for CH as I said before, seems very lacklustre from a medical show broadcast on the UK's biggest TV channel!
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zanychef
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Re: BBC Documentary 'Cluster Headaches'
Reply #4 - May 17th, 2017 at 8:59am
 
hi all
yes a pretty fucked up tv programme Sad
Gemma the sufferer concerned has had indomethacin and for a little while there was some relief but not total,she doesn't respond to triptans or o2 her diagnosis has been according to hers and hubbies posts gone from CH to PH to atypical clusters ,whatever the diagnosis the poor girl suffers so some of the flak (all) she recieved over the programme was very upsetting Cry
The doctor as far as i am concerned and many others is a dingbat and the tv series and subsequent book release are basically sensationalism journalism ill researched and edited to maximum impact,he has stated as well that he thinks most if not all illnesses can be cured by lifestyle changes ....i know this isnt true i've changed mine more than wives and theres plenty of those Wink
has the programme harmed the perception of CH and its treatments ? perhaps but only time will tell ......has it raised the profile of ch in the media? yes definetly it may be bad reporting but how often do you see CH mentioned on one of the 'big' tv channels during prime viewing hours?
theres good and bad to the whole thing I just hope Gemma finds the right diagnosis and effective treatment as the ones on the programme have not worked and she is back to square one ..suffering Sad
zany
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plenty of time to sleep now me headaches aint too bad:)
Ian Howard  
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Georgewhufc
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Re: BBC Documentary 'Cluster Headaches'
Reply #5 - May 17th, 2017 at 11:11am
 
Hey Zanychef

How did you get the extra info on Gemma?

I don't think anyone is aiming any of the flak at her at all - more so at a) The GP himself and b) the research team at the production company behind this programme!

I too question whether the programme has done CH any good - I think many of us CH sufferers watched that with frustration with a lot taking it out on forums like this and on social media! Pro's and cons to this coverage I guess!

Regardless of it all, yes, I'd second that hope that poor Gemma and her family find some relief soon.

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zanychef
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Re: BBC Documentary 'Cluster Headaches'
Reply #6 - May 17th, 2017 at 7:14pm
 
Hi George
The info on Gemma came because her and her husband are members of several Facebook groups,.
Indomethacin is a fairly common diagnostic tool actually I was in King's last year for a test to rule out ph and he as I too have some atypical symptoms.
The producers did approach Ouch UK but chose not to work with them or professor Goadsby, and apparently then decided to use the ecpert advice on the back of every cereal packet😊
Zany
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plenty of time to sleep now me headaches aint too bad:)
Ian Howard  
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lancashire Lad
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Re: BBC Documentary 'Cluster Headaches'
Reply #7 - May 18th, 2017 at 4:54pm
 
I’ve caused a stir or two on here before with my views (sometime ago now) so if I say any enlightening exposure of extreme headache symptoms in the media should be welcomed, I can well expect to get some abuse.

CH’ers like to hold onto the handle that Goadsby gave to them “CH is the most painful of all pains ever” or something like that. This from a man who has never had a headache in his life.

My headache, at its worst, if not a painful as CH is many times more worse and if you don’t accept that we can have a pissing competition to decide who’s right.

I have a permanent half head HA that used to develop into what was an unbearable pain 3 to 5 times a night 20-80 minutes duration. I do 1-9 24/7/365.25. At 10 the scale is hyperbolic, not a step change it is as I say unbearable.

With help here and my own researching I asked for Indo from my doc, 1-9’s continued but from that day the 10 hasn’t revisited me.

My problem source is in my neck, the faulty wiring is in my brain. A small dose of Amitryptilne (40mg/day) keeps  the background HA’s to manageable .

My HA’s aren’t primary they are secondary so if you want to apply Goadsby /  Sjaastad diagnoses (by the way even they can’t agree on certain HA diagnostic criteria) I have a cervicogenic HA.

So wtf am I here bleeding my heart out? Just to let you know that if you reject publicity into the field and reject the idea of finding links between one extreme HA and another then you might pursue your cause better by sitting on your thumb.
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maz
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Re: BBC Documentary 'Cluster Headaches'
Reply #8 - Jun 1st, 2017 at 7:56am
 
I saw it too George  - load of rubbish.
they said the girl had been diagnosed by a neuro - so where's her 02, where's her sumatriptan, where's her veraqpamil ? Perhaps it was the same neuro who fed me large doses of epilepsy medicine for 5 years, and every time I went into remission he thought it had worked.

And the GP - changed her diet, gave her a suppliment, regular scans and some sort of massage.  Low and behold the headackes got better after a few weeks.
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Peter510
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Re: BBC Documentary 'Cluster Headaches'
Reply #9 - Jun 1st, 2017 at 10:53am
 
Maz,

I sent a comment in to the "You say" section of the Sunday Times Magazine about this particular episode.

It will be interesting to see if they publish it.

Best wishes,

Peter.
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maz
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Re: BBC Documentary 'Cluster Headaches'
Reply #10 - Jun 1st, 2017 at 12:04pm
 
Well done Peter.  Let me know.

A few days after the program, out local radio station did a program.  It was much more informative as people could phone in.  Lots of sufferers phoned, many of whom could explain the disease and what was needed for it, but it was clear that there are so many poor people out there who have been given completely wrong info, and continue to suffer because of their doctors lack of knowledge.

Las time I went to the doctor for something not CH related, i saw a doc I had never seen before.  He saw on his screen that I had CH, and kept me there for almost 45 minutes, explaining it ( as best I could) and he took notes.  He said that doctors training on "headches" was a 10 minute session, so he knew nothing other than the normal migraine treatment taken from a text book. He said he would use the notes to do some some research on the subject.

I was so glad he asked, because he's learned something which may help others and I appreciated his willingness to learn.  I told him to come here.

Thanks for taking the time to write to your paper.
Maz.
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