Simon Bower Report

The meeting began with a welcome to the 82 people present from

ANN TURNER,

 Director of Migraine Action. She spoke briefly of the awareness of Migraine Action of the problems faced by cluster sufferers, because of the differences between the condition and that of migraine. There was a feeling from their staff that it was very difficult to answer questions posed by cluster sufferers, and ...

CHRIS WILLIS,

 Chairman of the Board of OUCH (UK) then spoke. He described his personal history, living with episodic, and, at times, chronic cluster headache. This focused not just on the practicalities, but also on the effects which clusters have had on his life.

He went on to explain a little of how OUCH and subsequently OUCH (UK) had come into existence, stressing the importance of the Internet in enabling people to meet others with the condition, but making it clear that the future of the organisation was not to be restricted to any one medium - it must be open to all. He also went through the Aims of the Charity, dealing with each point in turn,

SIMON BOWER

 then spoke, again giving a brief personal history. He talked of what had persuaded him to become involved, and how this had stemmed from a wish to ensure that the misdiagnosis he had endured did not continue for others, but that the subsequent good treatment he had had was more widely available.

He then went on to deal with issues surrounding supporters, suicide and diagnosis. The lack of correct information for doctors - eg. the drugs listed in the BNF - was also touched on. Other problems, such as availability of Imigran, Oxygen and other treatments were touched on. This last half of the talk was punctuated with shows of hands and comments from the floor.

(Note: During conversations and comments it emerged there were two gentlemen at the meeting, the first of whom had been diagnosed after two days, the second who had had clusters for 53 years - undiagnosed for 30 of those.)

The first medical speaker was

ANDY DOWSON

  from King's College Hospital Headache Services. He began with a brief outline of headache through the ages, including the use of trepanation for headache treatment (!) and the effects that headache has on patients' lives, including on those around him/her.

He moved on to describe the work of his department in training doctors - about 1000 of 39,000 GPs had had some training in clusters. However he pointed out that encountering C.H. was a rarity for many, whereas headaches were suffered by 96% of the population, 70% on a monthly basis at least, and 15% had migraine. Of the patients referred to his clinic 3% had clusters. This limited number made it difficult to find patients for research (eg. recently into Zomig).

He mentioned that there are problems for GPs in assessing the presence of clusters, as symptoms do vary. Using case studies we saw the variety of factors to be considered in making a diagnosis.

On treatment, the difficulties of finding an effective prophylactic regime were described. The bout may not be long enough to try a variety of therapies and see which was most effective, and the end of the bout could of course be spontaneous, rather than due to medication.

It was pointed out that DHE (Dihydroergotamine) nasal spray was now becoming available in the UK again. Also, that the use of Imigran as a preventative seemed to be not only not recommended, but ineffective. Details of other medications were discussed, as was their overuse.

After Tea, where people had the opportunity to meet and swap their experiences Peter Goadsby gave his talk.

(Because I know of the interest which this will generate, I have tried to be as complete as possible, but accept all responsibility for errors, as I was scribbling away throughout the talk. If anybody who was at the meeting notices something wrong - please let me know! SB)

DR. PETER J. GOADSBY

 began by introducing the other members of his team who were there: Chris Baes, on a long term visit from the famous Mayo Clinic in the US, and Dr. Manjit Matharu from Queen Square, who has been involved in much of the recent research, including the largest medical survey ever conducted into C.H.

He began by stressing the importance of patients in cluster research, pointing out that he considered himself fortunate to have a group of people who were willing to take part, and adding that the need for patients to continue to come forward was critical to further advances. This included anyone willing to have an attack filmed, as the effect on those doctors who witnessed such films always made them realise that a C.H. attack was far worse than any had envisaged.

This also included also a willingness to take part in Manjit Matharu's survey, of which copies were available. Also mentioned were genetic studies with a willingness to have blood taken as this was a major area of investigation (it appears that there is a strong genetic component, and families with the condition are particularly sought). He welcomed the existence of OUCH (UK) as a force which could help with all these aspects.

The talk divided into three areas: definitions, anatmony and management.

On definitions, we were informed that the IHS (International Headache Society) criteria were to be changed, and that CH would be included as one of the "Trigeminal Autonomic Cephalgias" with CPH, SUNCT syndrome and others.

This classification would be extended with the following description:
unilateral and severe attacks
short-lasting attacks
cranial symptoms present (eg. tearing, sweating)
patients are restless and agitated
migrainous symptoms may be present (eg. nausea)
alcohol and nitrates are strong triggers
The balance between episodic and chronic sufferers is about 85% to 15%.

Then we were shown the results of new research (Bahra et al., Neurology 2001) which showed that in "cranial symptoms" above the following breakdown had been observed in a study of 230 patients:
lacrimation (tearing) - 91%
injection ("red-eye") - 77%
ptosis (droopy eyelid) - 74%
rhinorrhea (blocked/runny nose) - 72%

In addition (and this is very new - ed) 14% of patients had an aura associated with their attacks 70% of which were visual disturbances, 16% motor ones (one sided) 13% sensory disturbances (one sided), and the remainder visual & sensory.

A comparison of migraine and CH was shown:
CH: Migraine
Male: Female predominantly
100%: 66% unilateral (one-sided)
50%:80% nauseous
56%: 85% photophobia (light sensitivity)
15-180 mins :4-72 hours length of attack

On the subject of the anatomy of clusters, several slides were shown of the brain from scans taken under pain and no-pain conditions. These pointed to the use of the singular cortex as a "barometer" of pain levels, a very useful diagnostic aid. (Prof. Goadsby commented that the work of cluster patients here was giving all neurological research great momentum.)

The pain mechanism routes were shown, particularly with reference to surgery.

It was clear that the brain "owns" C.H. rather than it being a vascular condition, and studies were ongoing to demonstrate this, using control patients who do not have headache in their families. Interestingly it is difficult to get controls in this category, and volunteers were sought.

Management of C.H. was an area of great concern, and the Professor felt that it should be a combination of a full explanation of what the patient is going through from the doctor, a recognition that it is an acute condition and a partnership between the doctor and patient. It was particularly important to treat using what works, rather than what is written down. (The position of the British National Formulary - BNF - was again mentioned here. It is hoped to improve the list of medications in future editions.)

Hence it is important that all such medications undergo double-blind, placebo-controlled, trials. Most of the familiar ones had indeed done so (verapamil, lithium, methysergide, oxygen, sumatriptan, zolmitriptan) but some had not (eg. valproate) even though sometimes listed as recommended treatments. Further, the use of topiramate and gabapentin (Topomax and Neurontin) were in the latter category, though research into these was desirable. Ergotamine, which had been removed from the list was being re-registered shortly.

Diagnosis was still a problem, and, though it was significantly better than in the past (in the 50s it could take 20 years to be diagnosed) it still took over three years on average; interestingly it still took about the same number of doctors (three) to get a correct diagnosis!

Frighteningly of course many go elsewhere than a doctor when C.H. rears its head. This did not appear to be a particularly safe course of action looking at the figures: of those that went to dentists, 46% were given an inappropriate procedure such as extractions, filing (sic!) and so on. ENT specialists fared slightly better (32%, with such options as sinus washouts). Opticians scored in the teens with spectacles etc, and praise was heaped on ophthalmologists, none of whom, it seemed, gave their patients such useless procedures. Working with these professions seemed a useful course of action in front-line diagnosis.

Use of surgery was clearly something which Prof. Goadsby felt extremely uncomfortable with. This stemmed from several areas, most notably its irreversibility. In addition, in his encounters with those who had had such treatment, the preponderance of side-effects was alarming. This included anaesthesia dolorosa, where there was a loss of sensation, yet a pain from the area was evident (like phantom limb pain? - ed). The risks were extreme and the efficacy questionable.

He concluded with a report on the recent Italian research (Leone et al., AAN 2001) in which an electrode is inserted into the hypothalamus. This treatment, or a similar version, has been used with success in treating Parkinson's disease. A current is passed through the electrode and (two patients have now had this treatment with success) the cluster bout seems to be stopped. More research is needed, but it is an area which he will be working on over the coming months.

Last modified: 2002