Released today, research by The Migraine Trust has found high numbers of people with migraine report not being believed or taken seriously, including in employment and when accessing healthcare. Over half say their mental health has been significantly affected as a result of living with migraine and sadly a third have had thoughts of suicide.

90% of people with the condition believe most people think migraine is just a bad headache. A new film also released by the charity highlights the many ways in which migraine can hurt.

Migraine is a common condition, affecting around 10 million1 people in the UK. Symptoms of a migraine attack can include head pain, nausea and vomiting, sensitivity to lights, sounds or smells and fatigue. Around one third of people will experience aura before an oncoming migraine attack, most commonly in the form of visual disturbances.

The Migraine Trust surveyed 2,028 people with the condition and found the impact of migraine goes far beyond the physical head pain often associated with it. It is launching the findings during Migraine Awareness Week (23-29 September).

Key findings include:

• 89% of people with migraine say their mental health has been affected as a result of the condition with 55% saying the impact is significant
• 34% said they have thoughts of suicide due to their migraine
• As a result of their migraine 80% participate less in social occasions, 59% have lost confidence and 48% feel isolated
• Impact on work is significant. 49% say migraine has a negative impact on ability to work and 27% say it has caused significant financial difficulties
• Many expressed feelings of guilt from letting colleagues down, fear of losing their job or shared experiences of employers who have dismissed their condition or not provided adequate support

While pain has one of the highest impacts on mental health, feeling guilty, worry about the next attack and unpredictable nature of attacks rank highly

Despite so many people experiencing migraine, the condition is poorly understood. A key theme throughout the research was migraine being dismissed or invalidated, with many respondents referring to migraine being mischaracterised as ‘just a headache’.

When asked ‘how does migraine make you feel’, anxious was the most common response (62%). Followed by depressed, hopeless, lonely and angry.

Fiona, who lives with chronic migraine with brainstem aura: “My migraine attacks come out of the blue, sometimes they last 3-5 days but often I am unwell for weeks or months at a time. Migraine has made me suicidal on three occasions. One time I remember sitting in my car knowing if I got out, I wouldn’t be safe. There’s the pain, losing my job, dealing with the grief of losing the well you, I’ve been made to feel like a hypochondriac so many times. If I had had appropriate support, I think I would have cost the NHS and society less in terms of mental health fall out. If someone early on had told me ‘I believe you’, or ‘it’s not your fault’ I really think I could have averted my mental health crisis.”

A third of callers to The Migraine Trust’s helpline report a decline in mental health due to their migraine. The charity is highlighting the need for the condition to be taken seriously so that those living with it get the support and care they deserve.

Robert Music, Chief Executive, The Migraine Trust: “This research paints a stark picture of the reality for many who live with migraine. It is far more than just a headache. Not being taken seriously is having a significant impact on the lives of those with the condition. Many spoke of social stigma, as well as poor understanding of migraine, and it’s clear that these are contributory factors in the reduced overall wellbeing of people living with migraine. It is essential that we change the perception of migraine and increase understanding about the true impact of living with the condition.”

Charlotte, who lives with chronic migraine: “My migraine experience has impacted pretty much every aspect of my life, and it has also hurt my loved ones. I’ve missed so many big life events due to migraine such as leaving my brother’s wedding early and having to watch his first dance afterwards on social media. I can never get that time back. For me, the worst part has been the impact it’s had on my daughter who is currently just eight years old. She’s had to grown up seeing her mum in pain regularly, not be able to do all the things we want to do together. That just breaks my heart. People don’t fully understand migraine or realise that it can cause pain in so many different ways. It can hurt families as well as the individual.”

Over one million people live with chronic migraine2, meaning they experience headache for at least 15 days a month, eight of which are migraine, for three months or more. Other migraine types include vestibular migraine which features vertigo, dizziness or balance problems, and hemiplegic migraine which involves temporary weakness on one side of the body.

Those with chronic, hemiplegic or vestibular migraine were more likely to report significantly negative mental health impacts, including reduced confidence, and self-harm.

Trustee of The Migraine Trust and Professor of Neurology at King’s College London Peter Goadsby: “Migraine is one of the most disabling neurological conditions and one of the most common. Its biology is increasingly being understood so recognition that it can affect every area of a person’s life is long overdue.”

While newer treatments are available, they are not currently accessible to all and finding an effective treatment can be a challenge. 43% of respondents said not having a treatment that works is one of the things affecting their mental health the most. Unequal access to treatments and NHS waiting times were also raised. Over a third (38%) said that feeling like they are not being taken seriously by health professionals has a negative impact on their wellbeing.

The charity is calling on employers to recognise the impact migraine can have and provide supportive working environments and reasonable adjustments to support their staff. It also wants to see equitable and timely access diagnosis and care, including to new medicines. No one should have their symptoms dismissed or overlooked when accessing care.

Sarah, who lives with chronic vestibular migraine: “When I mentioned that the [migraine] symptoms I was living with were causing me to experience depression, I was told not to think about it so much. I would leave appointments in tears, and it would take me days to get over them. I sometimes felt I was going mad. I was so depressed, and I began binge – eating as well. I gave up asking for help and felt that I couldn’t face going back to the GP ever again.”

Ends

• Migraine Awareness Week runs from 23-29 September. The Migraine Trust are highlighting the many ways that migraine can hurt, beyond the physical pain: Migraine Awareness Week 2024 – The Migraine Trust
• Research conducted between 29 May and 30 June 2024 through Survey monkey.
  • 73% were between 35 and 64. 27% were under 35 and 12% over 65
  • The sample was split fairly representatively across the UK proportional to population size
  • 91% were female which is in part expected as migraine affects more women
  • The majority had lived with migraine for more than 10 years (63%). Only 1.2% under a year. Many said it was over 30, 40 or 50 years