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Cluster Headache Help and Support >> Cluster Headache Specific >> BBC Documentary 'Cluster Headaches' http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1494970894 Message started by Georgewhufc on May 16th, 2017 at 5:41pm |
Title: Re: BBC Documentary 'Cluster Headaches' Post by AussieBrian on May 16th, 2017 at 10:55pm Mike NZ wrote on May 16th, 2017 at 6:57pm:
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. |
Title: Re: BBC Documentary 'Cluster Headaches' Post by Georgewhufc on 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! |
Title: Re: BBC Documentary 'Cluster Headaches' Post by zanychef on May 17th, 2017 at 8:59am
hi all
yes a pretty fucked up tv programme :( 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 :'( 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 ;) 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 :( zany |
Title: Re: BBC Documentary 'Cluster Headaches' Post by Georgewhufc on 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. |
Title: Re: BBC Documentary 'Cluster Headaches' Post by zanychef on 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 |
Title: Re: BBC Documentary 'Cluster Headaches' Post by lancashire Lad on 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. |
Title: Re: BBC Documentary 'Cluster Headaches' Post by maz on 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. |
Title: Re: BBC Documentary 'Cluster Headaches' Post by Peter510 on 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. |
Title: Re: BBC Documentary 'Cluster Headaches' Post by maz on 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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