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I've just watched a programme on BBC called Doctor in the House where a GP goes into the home of someone who has a seemingly intractable problem and tries to help them. I was drawn to this particular episode as it was advertised as being about a woman suffering from cluster headaches (I've been episodic for about 20 years). It was obvious from the outset that this poor woman was having terrible problems but it wasn't long before I realised that whatever it was she was suffering from it wasn't cluster headaches. This GP obviously didn't have a clue what he was talking about and started looking at her diet and general lifestyle without any reference at all to current research, treatment options, associated symptoms and anything else that might have given some information, help, hope to cluster sufferers. He recommended that she changed her diet (without giving any reason why or to what purpose), consult an osteopath and a chiropractor and reduce her stress levels. It turned out that her (obviously extreme) headaches were probably caused by a neck injury she suffered as a teenager.

Whilst I'm really pleased he may have found the cause of her problems and therefore potentially effective treatment, I feel quite appalled that there was no acknowledgement that it wasn't cluster headaches she was suffering from, thereby perpetuating the ignorance that seems to be a predominant factor in the lives of us clusterheads.

I know this will probably only be relevant to UK members (although I'm sure it's available on YouTube etc), but it made me so angry I felt I had to vent my spleen somewhere.

Edited by zakthecat
Hit the wrong key - duh!
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6 hours ago, zakthecat said:

perpetuating the ignorance that seems to be a predominant factor in the lives of us clusterheads.

That kind of thing is so infuriating.  Here in the US we have the reputable quacks on TV or in print telling people that capsaicin is the miracle treatment for CH, or some other similar nonsense (not to mention plenty of clueless doctors with their own unsubstantiated ideas about what to prescribe/what advice to give for CH).

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  • 3 weeks later...

Thats why we need to register our attacks, medicine use, vitamin or mineral intake and all we do to feel better so we get data showing things like this could be nonsense. 

Now we can only use our experiences trying to tell the world something is nonsense or working!!!

Lets collect data together, and together with migraines and tension headaches and Multiple sclerosis or diabetics. Lets look at out health in a one big picture instead of putting it all in boxes.


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Yeah, doctors can be amazingly clueless sometimes. Not all, but for to many. Part of the problem, I think, is they are so over worked they don't have time to follow up on current developments. Which is a shame.

I was very lucky in that my GP's best friend's husband has CH, so she knew exactly what my problem was on my first visit to her when they started. I saw a neurologist, who is one of the top headache specialists in the UK, within a month of my visit. 



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  • 3 weeks later...

What a bloody awful programme. If it really was cluster headaches, and all sympathy to the sufferer by the way, then why the flying heck wasn't the GP getting her oxygen sorted out as per NICE recommendations. Glad she found a mechanical cause but it really muddies the waters for the general public's lack of understanding of CH. Frustrated wife of a n episodic sufferer. 

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for quite some time to come...this here is the promise and hope for us cluster heads. This site.

I am a doctor, my father was a doctor. For most of my life I breathed the carbolic acid fumes for air ( really crude way of telling that it was a hospital...and that even if it wasn't the poor Carbolic acid they used to disinfect, the term was "Carbolized" the OR or the ER)

I was in Med school when mine started and I did have the help of some of the best clinicians possible, but yes they were clueless. Not defending them but I did give them the allowance.... CH being a rarity in my country....and in their books.

It was only in 2002 that the main texts of Medicine actually made a mention of CH as an entity, prior to that it was a "cluster variant" of migraine.

Most of their lives GPs and Consultant physicians deal with routine cases which are common with minor variations from case to case. I must accept that my condition does have the morbid predicament of being a rare and complicated problem WHICH needs an individualized approach for a much longer period of time than MOST doctors can afford to offer.

... Livid was how I could have been described as when I first saw it mentioned in the Text book...Livid and relieved. relieved that the arguments were over, hopefuly

I wanted to rush to all my teachers and colleagues and hit them in their faces with the exact page open ( the book of course)

I did not do that

Would not have helped a tiny bit. it would not have changed the demographics of their practice and knowledge.

So I repeat

Unless (and I do not actually wish any ill for my community....communities...both the doctors and the Cluster heads)...but unless a credible number of Neuros themselves start developing our symptoms in their heads and in their lives, we have to keep on supporting ourselves, each other, over here.

I found my relief on these pages and I am deeply thankful.

Been a very long time since I have said anything .

Wishing you all a quick and long lasting relief ..


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