"I cannot speak, I cannot walk": Calls for better migraine treatment

James Paget University Hospital, Gorleston, Norfolk.

The James Paget University Hospital has been praised for its specialist migraine care - Credit: Nick Butcher

A Norfolk hospital has been praised for its work treating migraines amid a report calling for health services to improve access to the first-ever drug specifically for the condition. 

The Migraines Trust says one in seven people in the region suffers from migraines and is calling for services, including in Norfolk, to further speed up diagnosis and care.

Chief executive Rob Music said this included access to calcitonin gene-related peptide (CGRP) monoclonal antibody treatment, the first-ever drug specifically for preventing migraines. 

James Paget University Hospital, Gorleston, Norfolk.

The James Paget University Hospital has been praised for its specialist migraine care - Credit: Nick Butcher

The trust praised the work of the James Paget University Hospital, and said it ranked in the top five trusts in the country for specialist migraine care after Freedom of Information requests. 

The hospital has a specialist headache doctor and introduced a monthly specialist headache clinic at the start of the year. 


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Dr Carlo Canepa says the clinic sees up to eight patients per clinic. 

He said: "I see more than 80 to 100 migraine cases a year and have a profound interest in this subject. I’m hoping to explore this further through research and increasing our capacity to do Botox for migraine in the future.”

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A trust spokesman said it has the possibility of CGRP prescription.

Both the Norfolk and Norwich University Hospital and Queen Elizabeth Hospital offer services for migraines. 

A spokesman for NHS Norfolk and Waveney Clinical Commissioning Group said it follows NICE guidance when diagnosing and treating migraines.

They added: "This includes offering a range of prevention and treatment options through primary care.

“Where appropriate, GPs can also refer patients to a specialist for further care and treatment. This could include calcitonin gene-related peptide (CGRP) monoclonal antibody treatment, which we commission in line with NICE recommendations as an option for preventing migraines in adults.”

Rob Music, chief executive of the Migraine Trust.

Rob Music, chief executive of the Migraine Trust. - Credit: Migraine Trust

Mr Music said across the country patients were resorting to private prescriptions at a cost of more than £300 a month, because they could not access CGRP. 

He said: “It is unacceptable that people living with such a debilitating long-term condition cannot easily access CGRP medication and must travel outside their area to see a specialist. This inequity must change.

"Our support services at The Migraine Trust are contacted daily by people who have had to fight to be diagnosed correctly, who have to wait months or longer to see a specialist, or who are unable to access the NICE-approved medication they are eligible for.”

Emma-Rose Hooker, 24, has suffered migraines since she was 11 years old. 

Emma-Rose Hooker, 24, has suffered migraines since she was 11 years old. - Credit: Emma-Rose Hooker

Why improving services is important to migraine sufferers? 

Emma-Rose Hooker, from Hunstanton, experienced her first migraine when she was 11 and later diagnosed with chronic migraines. 

With a warning pain in her brow, eye or temple, her migraines last up to seven hours at a time, and were occurring up to three times a week. 

She said attacks have occurred on dream holidays and at weddings but the biggest trigger is stress. 

Now 24, she says she has been able to manage her migraines with beta-blockers and Frovatriptan but for many sufferers, it means many trips back to medical professionals to try different medications. 

She said: "I have 20 minutes before I'm incapacitated, I cannot speak, I cannot walk, I cannot eat or drink, nothing. I have 20 minutes, wherever I am, at work, I have a short amount of time before I shut down.

"I do not think we will move forward in learning about migraines and understand what causes them and the treatment without specialist clinics being established.  

"I would say it takes about a year to be seen, diagnosed if you haven't been already, and given some medication."

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