17 - 18 January 2019 - By Clare Sargeant

It was early in the morning on a cold day back in January that Clare Joy and I set off for Hull to attend the 8th Biennial BASH National Meeting on Headache. The event ran over two days and global experts covered a wide range of topics on headache diagnosis, management and research. It is the largest headache meeting in the UK and was widely attended by delegates from all over the UK and abroad. In attendance were general Neurologists, Neurology Trainees, General Physicians and General Practitioners.

We were the first to arrive at the venue and we couldn’t believe our luck to see sofas lining the edges of the large hall. It wasn’t long before the 300 delegates had filled the room and we were busy engaging with clinicians and handing out our leaflets.

The first talk of the conference was about the history of migraine. It was fascinating to hear that migraine has always been with us; the ancient Greeks wrote so vividly about migraines that any migraineur would relate to what was written thousands of years ago.

Clare and I needed to have regular breaks lying on the sofas conveniently placed at the back of the hall, unfortunately it was not easy to hear the speakers while flat at the back but we did learn:

  • Botox is a well tolerated effective treatment for many patients with chronic migraine.
  • Migraine can be induced by giving willing volunteers nitroglycerin making it possible to scan and do blood tests during a migraine episode. By these methods much has been discovered, which has led to effective treatments.
  • Regulating our internal body clock can reduce vulnerability to migraine.

During the coffee and lunch breaks we had a steady stream of visitors to our table and we were encouraged by the number of delegates keen to find out more about the CSF Leak Association. Our leaflets, posters and fact sheets were very popular and disappeared fast.

Dr Matharu, Head of our Medical Advisory Committee (MAC) gave an informative talk on cluster headaches and the treatments available.

Of special interest to us was the presentation on Spontaneous Intracranial Hypotension (SIH) by a member of our MAC, Dr Brendan Davies. A subject he said that was dear to his heart; he recommended the CSF Leak Association website as an excellent source of information and he suggested the delegates visit our stand after his talk. He went on to explain:

  • SIH was first described in 1938, it is increasingly being recognised and he believes it much more common than the published figure of 5 in 100,000.
  • Research into SIH is increasing with only one research paper published in 1991, now there are 40-50 papers published every year.
  • Headache is not always the most prominent feature, otological symptoms can be most troublesome including muffled hearing, sometimes deafness, photo / phonophobia, neck stiffness and tremor.

On encountering a patient with an orthostatic headache he urged the delegates to think:

  • Could this be SIH?
  • What tests and scans can be done to support a diagnosis?
  • Where is the leak?
  • Why is there a CSF leak? Could there be a connective tissue condition like Ehlers Danlos Syndrome?

His main message to the delegates was how to spot SIH on MRI images stating the key signs to look out for can be remembered by the letters SEEPS.

S Sub dural fluid collections
E Enhancements - nonnodular diffuse pachymengial enhancements
E (Venous) Engorgement and swelling
P Pituitary hyperemia
S Sagging of brain that can looks like chiari

He went on to say if conservative care fails the treatment of choice is an epidural blood patch (EBP) which can be a curative procedure without knowing where the leak site is. One study showed that with an EBP given within 45 days of symptoms starting, 90% of patients got immediate relief with a long term cure rate of 60%. A second EBP given soon after increases the cure rate to 70- 80% even when the MRI was normal. After 2 EBPs efficacy reduces.

He stated some possible reasons for an EBP not being effective are - dural tears, boney microspurs, menengial diverticuli and CSF venous fistula.

He emphasised that a CSF leak can happen spontaneously and they may not be fixed with only one EBP, some people needed several EBPs before the leak is sealed. After two unsuccessful EBPs he recommended referral to a specialist centre where a targeted patch under x-ray guidance could be performed.

After the coffee break Dr Sarmad Al-Araji gave an interesting presentation on “CSF venous fistula – a rare cause of spontaneous intracranial hypotension”.

We had a rewarding two days learning about many aspects of headaches and it was good to meet up with our friends on the headache circuit and exchange ideas with each other. We are very grateful to Dr Ahmed for inviting us to attend and providing us with the opportunity to raise awareness of CSF leaks amongst clinicians who will spread the word more widely about how to recognise and treat CSF leaks.

If anyone is interested in helping out at future events please contact volunteer@csfleak.info It will be great to meet you!

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