Migraine News, March 2023

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Welcome from the Chief Executive

Welcome to the latest edition of Migraine News, which includes inspiring personal stories from people living with migraine, information on diagnosis, the latest migraine research and more.

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The Migraine Trust is the largest charity dedicated to leading the fight against migraine in the UK. We exist to transform the lives of people who get migraine. We do this by funding and promoting research, providing support and information, and campaigning for people affected by migraine. Visit our website to subscribe to email updates and news, access migraine information and to learn more about The Migraine Trust including our support services, research and events.

Since the last magazine, we’ve been continuing to expand our work to improve the lives of the 10 million people living with migraine in the UK. This includes launching a new report focusing on issues faced by the one million children and young people with migraine. While migraine is so often overlooked in people of all ages, this is especially true of children who struggle to be taken seriously at home, at school and in healthcare. We are pushing to raise greater awareness of migraine in children and young people in education and healthcare settings, and wider society in general. We also launched an array of new information on our website, with content geared at children with migraine of all ages, as well as healthcare professionals, school staff, parents, carers and siblings.

We also saw the return of The Migraine Trust International Symposium (MTIS) to London’s Hilton Metropole, with over 800 attending. It was wonderful to meet with the international migraine community in person for the first time since Covid. In addition to hearing about exciting developments in migraine treatments and research, we were delighted to see so many people at our MTIS Patient Day, who generously shared their stories and put the experts to the test.

It has also been brilliant to connect with people with migraine at our Managing Your Migraine events in Belfast and Hull, and we look forward to hosting many more in-person events like these around the UK in months and years to come. Looking ahead, 2023 will see the charity doubling up on its focus to see improvements in diagnosis, care and treatment pathways including launching a new strategy plan, greater focus on gaining support from parliamentarians, greater awareness of migraine and calling for health system change.

As ever, I am hugely grateful for your continued support. We are a small charity and without your generosity, we would not be able to expand our work to support the one in seven people with migraine, fund vital research projects, and campaign for much-needed change for people with migraine - so thank you.

I hope you enjoy the magazine!

Best wishes,

Rob Music

Trustees

Michelle Walder (Chair)

Launching our parliamentary toolkit in Belfast

On 30 November 2022 we held an event at the Northern Ireland Assembly in Belfast to launch our new migraine toolkit for MLAs. Our drop-in event at Stormont invited MLAs and their staff to find out more about migraine, how it affects their constituents and colleagues, and what they can do to help the 270,000 people living with migraine in Northern Ireland.

We know that Northern Ireland has very long wait times to see a neurologist and there seems to be limited access to the new and highly effect treatments known as calcitonin gene-related peptide monoclonal antibodies (CGRP mAbs). This must change and we hope our event has helped to raise awareness of migraine among Northern Irish parliamentarians.

We are very grateful to all who joined us during our drop-in session. MLAs who came to speak to us included David Honeyford (Alliance Party MLA for Lagan Valley), Harry Harvey (DUP MLA for Strangford), and Alan Robinson (DUP MLA for East Londonderry).

You might remember that we also launched parliamentary toolkits in England, Wales and Scotland earlier in 2022 and we look forward to continuing our work with parliamentarians throughout the UK during 2023.

Appeal raises over £6,000 for people with migraine!

A huge thank you to everyone who kindly donated to our winter appeal at the end of last year. We were thrilled to surpass our target and raise a fantastic £6,293, which will support our work this year and help us reach even more people with migraine, including children and young people.

We couldn’t do what we do without the support and commitment of our community, so thank you. Your continued generosity enables us to support people struggling with their migraine, fund medical research, and helps us campaign to improve the lives of people living with this often misunderstood condition.

Eptinezumab (Vyepti) approved by NICE

On 25 January 2023, the National Institute for Health and Care Excellence (NICE) announced that eptinezumab (Vyepti) had been approved for use within the NHS in England for the treatment of episodic migraine. It was also approved for use in Scotland by the Scottish Medicines Consortium on 13 February.

Eptinezumab is given by infusion (drip) into a vein once every 12 weeks. It is one of a number of new generation calcitonin generelated peptide (CGRP) antibody drugs, which are the first medication specifically designed to prevent migraine. This approval improves treatment options for people affected by migraine. NICE says the drug should be available for patients who experience migraine on four or more days a month and who have already failed to respond to at least three other migraine preventive drugs.

Supporting GPs and their patients with migraine

We’re excited to have launched a trial of our new information packs for GPs. Created in collaboration with GPs with special interest in headache Kay Kennis and Richard Wood, and Headache Nurse Specialist Ria Bhola, the packs aim to support GPs and their patients who have migraine by providing key information on diagnosis, treatments and migraine management.

The packs also include posters for display at GP surgeries to help raise awareness of what migraine is and where people with migraine symptoms can find support. So far, they have been sent to 3,500 surgeries and we hope to expand the programme to more surgeries across the UK.

MIGRAINE AWARENESS WEEK 2022

Migraine Awareness Week is an opportunity to draw attention to migraine, raise awareness and reduce the stigma around migraine in society. Last year, Migraine Awareness Week took place from 4 to 10 September and we focused on migraine in children and young people. Migraine affects one in 10 children and young people in the UK but they are often overlooked and not properly supported by the healthcare system and at school.

Our new report

At the start of the week we launched a new report focused on migraine in children and young people in the UK. It explores the impact migraine has on children and young people, the issues they face and what needs to be done to better support them at home, in education and in the healthcare system. We also make a number of recommendations of what must be done to improve the lives of children with migraine.

The findings and recommendations in the report are based on a number of focus groups, interviews and surveys of young people, parents and carers of children with migraine, and leading children’s headache experts in the UK, including the team at Great Ormond Street Hospital.

Our key findings include:

• Younger children need help in explaining their migraine and need to be included in decisions about their treatment.

• We need better communication between health services and schools.

• Both policy changes and cultural shifts are needed to ensure migraine is better understood at school and schools have the right resources and information to properly support students affected by migraine.

• Children and young people, as well as their parents and carers, have a strong desire to connect with other people in the same situation, for example through support groups.

You can read the full report on our website at migrainetrust.org/ campaigns/better-migraine-care

New website section

In addition to our report, we were excited to launch a new section of our website specifically to help children and young people with migraine. It includes a range of different information and resources, with some content aimed at children and teens

of different ages, and other content aimed at parents/carers, siblings, teachers and healthcare professionals.

The new section was created in collaboration with a number of experts in children’s headache and migraine. It has received some great feedback so far and we hope it will not only help young people with migraine feel less alone and gain a better understanding of their condition, but also help their families, teachers and doctors support them better.

If you know a young person living with migraine, a medical professional or someone working in a school or university, we’d be grateful if you could share our new website section with them. You can visit the new section at migrainetrust.org/migraine-inchildren-and-young-people

The migraine community comes to London

During Migraine Awareness Week 2022 we were delighted to host The Migraine Trust International Symposium.

This scientific conference happens every two years and brings together researchers, medical professionals and patient organisations specialising in migraine and headache from across the globe. This was the first time the community had been able to meet on such a scale in person since before the Covid-19 pandemic.

We heard fascinating talks about the latest research on migraine and exciting new treatments for migraine, including gepants, a new calcitonin gene-related peptide (CGRP) inhibitor that comes in tablet form and has few side effects. They are currently being reviewed by the National Institute for Health and Care Excellent (NICE) and we hope they will be available in the UK soon.

On the final day of the conference, we hosted a patient day. This was

an opportunity for people living with migraine to come together, share stories and find out more about migraine, migraine treatments and care, and the latest migraine research from a panel of experts. We are very grateful to everyone who joined us, we thoroughly enjoyed meeting you and hearing about your personal experiences of living with migraine.

How you can support our Better Migraine Care campaign

While Migraine Awareness Week is

over, our work to improve the lives of children and young people with migraine has not stopped. If you would like to support our work, there are two key ways you can help us.

The first is to share your experiences via social media using the hashtag #BetterMigraineCare. If you struggled with migraine as a child or have a child with migraine, we would be very grateful if you could post about your experience to help raise awareness of migraine in children and the issues they face.

You can also help us by letting young people with migraine, their parents and carers, school staff and healthcare professionals know about our resources at migrainetrust.org/ migraine-in-children-and-youngpeople.

MEET OUR NEW TEAM MEMBERS

Since our last magazine, we have welcomed two new members of staff. Rebecca Jobson has joined us as Head of Fundraising and Debbie Noel has joined us as Office Manager and Executive Assistant.

REBECCA JOBSON (HEAD OF FUNDRAISING)

My role is to establish and lead our small fundraising team to grow income over the coming years to a more sustainable level. This will need a new fundraising strategy which I am really excited about, we have so much potential to broaden our areas of funding, both in the medium and the longer term. Before joining The Migraine Trust, I spent the past 15 years working in adult and baby hospices. I absolutely love the charity sector and couldn’t imagine working anywhere else.

As a mum of three, spare time can be limited because I spend most of my weekends on the football side-lines but a few years ago, I started Ballroom and Latin dancing which is a lot harder than it looks on Strictly but so much fun. I enjoy running, live comedy, holidays and planning trips with my family.

DEBBIE NOEL (OFFICE MANAGER AND EXECUTIVE ASSISTANT) & SAMI (CHIEF HAPPINESS OFFICER)

It’s my job to look after the CEO and to support the Board as well as keeping on top of things in the office. Before joining The Migraine Trust, I worked with Wheels for Wellbeing, an inclusive cycling charity in South London. I also have over 20 years of experience in office and executive support in the private sector.

I’m usually in the garden looking after whichever vegetables choose to survive this year or taking Sami (the office dog) out to the countryside. In the last year, I’ve started going to my local gym, just to use the pool which has been amazing for preventing and soothing migraines.

Q&A: LIVING WITH MIGRAINE LATER IN LIFE

BY RIA BHOLA, HEADACHE NURSE SPECIALIST, AND STEPH WEATHERLEY, SENIOR INFORMATION AND SUPPORT SERVICES ADVISOR

Some people experience changes to their migraine in later life, which can be disconcerting. Here, we answer questions about migraine in later life that we hear on The Migraine Trust helpline.

Why am I experiencing migraine in later life?

Often migraine attacks occur in later life in people who are predisposed to migraine and probably have had migraine already at some point during their life. For example, some people might experience migraine attacks during childhood or early adulthood and then have no obvious migraine symptoms for many years, before experiencing migraine attacks again in later life. It is possible that certain lifestyle changes or other changes like increased stress or hormonal changes start to trigger migraine attacks again or make them worse in later life.

On the other hand, some people do find that their migraine improves or goes away in later life, it can vary from person to person.

If your migraine has become worse or more frequent and it’s unclear why, you should speak to your doctor.

Some people do develop migraine for the first time later in life. This can sometimes be a sign of an underlying health condition, so if you experience migraine for the first time or are worried about your health, talk to your doctor. They will be able to do a health check to rule out any other conditions and recommend treatments to help with your migraine.

Can I use triptans if I am over 65?

Triptans are not licensed for use in those over the age of 65 but their benefits can often be greater than the risks, providing there are no pre-existing vascular conditions or medications being taken that could interact with them. Vascular conditions refer to problems with the heart and blood vessels including high blood pressure. Triptans tighten blood vessels which will make them unsuitable for some people.

You can discuss triptan medications with your doctor and they can carry out an assessment to consider the risks and benefits of using triptans if you are aged over 65. Your doctor will consider risk factors such as smoking, diabetes, high blood pressure, raised cholesterol, obesity, a history of bleeds or clots and your family history. Once they have made these considerations and reviewed any risks they may be happy for you to continue using triptan treatments.

If you are over 65 and remain on a triptan medication, you may need more regular reviews with your doctor to assess any developing risks over time to ensure that these are still safe for you to use.

Other treatments for migraine later in life are the same as treatments for younger people, provided there are no reasons why you can’t take a certain medication such as pre-existing health conditions or other medications that you take. Your doctor will decide what treatment is best for you based on your symptoms and medical history.

Migraine and menopause, what happens?

Around times of hormonal change, such as menstruation, perimenopause or menopause, migraine attacks can change pattern and either improve or increase. During perimenopause they can take a few years to settle whilst hormone levels fluctuate. If your migraine is getting worse during the perimenopause or menopause there are other treatment options which your doctor can consider. It can be helpful to have your hormone levels checked with a blood test. This can help you and your doctor decide if additional treatment with hormones should be considered. Alternatively, you may be referred to a menopause clinic where your options can be discussed further and your doctor can make a plan to keep things more stable.

Once a woman’s periods have stopped, the hormonal cycle can continue for years afterwards. This can mean some women continue to get migraine attacks on a monthly basis, even when their periods have stopped. For most women, their migraine attacks settle down two to five years after the menopause.

After the menopause, women may find that migraine triggers that are not related to their hormones become more obvious, or that they develop new migraine triggers, for example neck tension.

The menopause can be a difficult time for women with migraine. The irregularity of periods can make it harder to cope, as migraine attacks may be more difficult to predict.

Also, symptoms of the menopause such as hot flushes and night sweats can mean your sleep is disturbed and you may feel stressed. This can mean you are more likely to have a migraine attack. Some women do go back to using a preventive treatment for some time to help settle things.

Although some women continue to have migraine attacks after their menopause, for most women, when their menopause finishes, they find their migraine is a lot better.

If you or a loved one has questions about migraine or is in need of support, you can contact us via our free helpline on 0808 802 0066 or visit migrainetrust.org/contact-us. You can also chat to us online through our new live chat service at migrainetrust.org

BEING DIAGNOSED WITH MIGRAINE

BY WING SEE LI, WHO LIVES WITH MIGRAINE

I’ve had migraines for as long as I can remember, ever since I was a little girl. I remember years ago when I used to live with my family, I once had a migraine attack so painful it reached the point where it rendered me literally speechless. I wasn’t able to form sentences at all. Never in all my life have I felt so helpless. It was so debilitating that I felt my family probably should have called an ambulance. I think I didn’t tell them exactly how I felt as I was worried about how they might react.

Back then, I didn’t know what was wrong with me. As a result, I started visiting the doctor to see what might be wrong. I’ve already lost count of how many times I went to the doctor about my migraine throughout the years. Whenever I see the doctor, I’m usually prescribed with paracetamol or other painkillers. It wasn’t until I reached adulthood that I was finally diagnosed with migraine. At first, it was a lot to take in but now I have finally come to terms with it.

GETTING A MIGRAINE DIAGNOSIS SOONER

BY RIA BHOLA, HEADACHE NURSE SPECIALIST

Migraine is the most common neurological reason for consulting a GP, accounting for around 2.5 million appointments every year. However, getting a correct diagnosis continues to be a challenge. It should not take years and several visits to your doctor to receive a correct diagnosis. Many people also get diagnosed in the emergency department.

Rare types of migraine, such as hemiplegic migraine or migraine with brainstem aura, may take longer to diagnose and people suspected of having these rarer types of migraine should be referred to a neurologist early.

Diagnosis is an essential first step because getting the right diagnosis is crucial to having access to treatment. It may then take some time to find the most suitable treatment. It is therefore important that more GPs are able to diagnose and treat migraine.

Furthermore, many people with migraine will have had the symptoms for some considerable time before seeing

their doctor. They may already have various self-care options and over-the-counter treatments. While these may have helped, they will not be a substitute for appropriate treatments and adequate control.

GP appointments are quite short so it can be a challenge to explain all your migraine symptoms and their impact during an appointment. To improve this, we would suggest some strategies to help:

• Keeping a daily headache diary for a set period of time with some basic information and taking this along to your appointment can be very helpful in your discussion. For example, you can record at least a four-week period of your symptoms such as migraine attacks and any background headache, indicating the severity on each day. You can download a diary template at migrainetrust.org/keeping-a-migraine-diary

• Making a list of what you take to treat your symptoms, the doses and whether they were helpful.

• Are there days when migraine has an impact on how well you can work, study, or function and do you have to take time off or miss appointments due to the attacks? Explain how bothersome or disruptive they are.

• Making a note of a typical attack. Write down the main symptoms you experience, how long they last, how severe they become and what happens during a typical attack. For example, do you want to be still and quiet, do you feel sick, does the light, noise or smells bother you and do you have aura symptoms or any early warning signs of an attack?

• Have you noticed any triggers or anything that brings them on?

• Does anyone in your family have migraine?

• You can share links to more information on migraine with your doctor, such as The Migraine Trust and the British Association for the Study of Headache (BASH) websites ( migrainetrust. org and bash.org.uk ).

• You should take along a note with specific questions you have. These may include questions on new treatments, side effects of treatments and how to treat an attack.

In most cases this will provide sufficient information to make the diagnosis and discuss some treatment options. However, migraine is experienced with a range of symptoms that will vary in how they affect each person. Your doctor may therefore ask further questions, do a neurological examination or for some, make a referral to a specialist service for further review and treatment.

BEING DIAGNOSED WITH MIGRAINE AT 48

BY ROSEMARY, WHO LIVES WITH MIGRAINE

What my migraine attacks feel like

When I have a migraine attack, the first symptom I experience is neck pain and stiffness, which spreads down through my shoulder and right arm. The pain moves to the base of my skull and spreads from ear to ear and is very painful to the touch. The pain then settles like a heavy weight on top of my head and moves down to my eyes. I then feel dizzy and experience brain fog. I have to lie down and rest. The worst part of a migraine attack for me is the pain and nausea. The sickness sometimes just doesn’t stop.

Being diagnosed at 48

Previously I had occasional headaches but painkillers like paracetamol and ibuprofen worked well. They were nothing like my migraine attacks. Interestingly, my mum had migraine from the age of 11 and her mother had them badly too and had to spend the day in bed. My great grandmother also had to cope with migraine while having 12 children and there was no treatment back then. So I thought I had escaped migraine.

When I was diagnosed with migraine, I had three children (who were 13, 16 and 18) and I had a house to manage. I had returned to work at the age of 40 and had a great job that I was really enjoying. My job was fast-paced and so

was my life, but I had good employers so it was manageable. I had a good work/life balance and would be home by around 6:30 in the evening to see my children, have dinner and go to bed at a reasonable hour.

When my first migraine attack took hold, I didn’t know what was happening. It lasted three days and didn’t respond to ibuprofen or paracetamol. The GP diagnosed me with migraine and gave me zolmitriptan which had just come on the market. It was completely successful and would stop my attacks after two hours and stopped the nausea almost immediately. I’d feel a bit dopey after taking it, but it worked.

The problem was that my migraine attacks escalated within weeks from four a month to six a month and then 12. My GP advised I was taking too many triptans and sent me to a neurologist to try preventive medication.

My treatment journey

Over the years, I’ve consulted with a number of both private and NHS neurologists. I’ve tried all the preventives – betablockers, topiramate, valproic acid, Botox. None of them helped. I also feel angry because nobody ever explained the potential severe side effects to me. Topiramate resulted in panic attacks and low mood, meanwhile Botox gave me a month-long headache.

My advice to others: make sure doctors, friends and family really hear what you are going through, find the right medication and live your life to the fullest.

I’ve also tried physiotherapy, osteopathy, acupuncture and massage as I think my migraine is related to my neck. None of these helped. The only solution was taking triptans. My GP was wonderfully understanding and would prescribe me a monthly limited maximum number, but it meant most of the time I was either getting a migraine attack, having an attack or getting over one.

The consultants I’ve seen over the years have been a mixed group. Some were kind and helpful but I often just didn’t feel they had really heard me. They didn’t seem to listen when I spoke about how my migraine was affecting my day to day life. I was also given advice that maybe I should just stop working and I would be less stressed. They thought if I was at home with the kids I wouldn’t be stressed, they’d obviously never looked after kids! I also asked what would happen if I gave up my job and then my migraine didn’t go away? They had no answer to that.

Accessing CGRP treatments

I hadn’t seen a consultant for years but tuned into the World Migraine Summit. This is where I first heard about the new calcitonin gene-related peptide (CGRP) treatments. I kept track of what was happening with them and when I saw they had been approved for use on the NHS by NICE, I contacted the last private consultant I had seen and asked for them. He put up various obstacles, saying I was too old for them and we couldn’t risk it. I recall mentioning that there was also a risk with all the other triptans and painkillers I was taking.

He had a look at the research and his concern was the lack of statistics on CGRPs for over-70s. However, I’m fit and I have no serious health conditions or heart issues so eventually he agreed. I then found out it would cost me £250 a month but I felt it was worth it if it treated my migraine. It was expensive but it worked like a miracle. My headache days reduced from about 20 to six per month. In the last couple of months, I’ve had almost none.

Once I knew it worked, I asked if I could have it on the NHS. My consultant said it was only available to people of working age. This was about 18 months ago and so I spoke to my GP, who felt I should at least be referred to the local Neurology Department. Due to Covid it took six to seven months to see someone. I wasn’t expecting much, I thought they’d just say I was too old, but I was wrong.

The new consultant listened and acknowledged how badly migraine had affected my life. I was put on the list for a CGRP programme. It had been interrupted by Covid so he advised I’d have to wait four to five months whilst a new programme was set up. After a period of a few months the Neurology Department phoned to arrange delivery for three Ajovy injections. I was elated that the consultant had heard

me and understood me. He also understood and took into account my neck issue. He said of course osteoarthritis in the neck could lead to neck spasms that could trigger migraine. It felt so empowering.

What needs to change for people with migraine

I think migraineurs need to be acknowledged, and the distress migraine can cause needs to be taken seriously. Acknowledgement by others is so empowering.

People also need to understand the impact migraine can have on every aspect of your life, it can be very isolating, you go to a party or any social events constantly worrying about migraine and how much you can drink and how you will get home if you have an attack.

For me, because my neck is involved, lots of thigs I love doing can trigger an attack. I like hiking, swimming, walking, gardening, pottery and music. I even had to give up playing the flute because it would make my neck tense and bring on a migraine attack. It affects everything I do, not just work.

We need attitudes to migraine to change. People look at you and they don’t see a neurological condition, they can think it’s an excuse. You feel as if you’re letting people down, so it’s not practical to rest, it’s unrealistic you can stay in a dark room for days while life goes on around you.

However, on a more positive note, there are far more treatments now than there were 25 years ago, and in my experience some work very well. Triptans and CGRPs have been absolute life-savers to me.

My advice to others: make sure doctors, friends and family really hear what you are going through, find the right medication and live your life to the fullest.

MY EXPERIENCE OF LATE-ONSET MIGRAINE

By Elowen Rose, who lives with migraine

I’m 52 and have migraine with aura, but I haven’t always lived with migraine. I had three severe attacks when I was about 12. The first time I had one I lost my hearing and sight and was violently sick. Following these three attacks I didn’t have a single one for 40 years. Then, when I turned 50 in October 2020, they started again.

My migraine symptoms

Initially, I feel a strange and intense wave of panic and then my vision starts to go. I’ll be looking at my computer screen and be able to see everything but it feels like I can’t. I liken it to looking at a screen when the sun is shining on it. A couple of minutes later I will lose the centre of my vision and a bright fluorescent line will appear down the middle of my vision. Then I see a zigzag that starts small on the outside of my field of vision. It then gets bigger and pulsates and moves across my line of sight. This lasts for about 30 minutes and then I experience severe head pain and neck pain. I also feel very fatigued like I could just lie down on the pavement and go to sleep.

My neurologist has told me that the intense wave of panic I feel at the start of a migraine attack is actually part of the attack itself. Before I saw him my GP told me I was just being neurotic and overly anxious. The GP said I was having a panic attack and that was causing a migraine attack, but according to my neurologist it’s the other way around.

Developing migraine later in life

When I first had a migraine attack at 50, I thought I was having a stroke. I phoned the GP who said it sounded like migraine and he told me to come off my hormone replacement therapy (HRT) oestrogen tablets which I’d been taking for three months. I had two more attacks that same week.

I was then given oestrogen patches and was migrainefree for a couple of months. I had an attack every three months and every time the doctor tried to up my oestrogen it triggered more attacks. In January 2022 I had to take a week off work with a severe migraine attack. I went back to work the next Monday and then had another attack.

I was told by my GP to take some time off work. He thought my migraine attacks might be stress-related. I was getting pulsating pain on the right side of my head with muscle spasms in the right side of my neck. I remember I tried to take my dogs for a walk and just had to sit down in a field because the pain was so intense.

My healthcare journey

I was referred to a physio who thought I had broken a bone in my neck, although I was later told that I would only have broken that specific bone if I’d been in a car crash. I also had a brain scan and paid to see a consultant hormone specialist. I had to wait two months for my brain scan and when it came back there were some signs of intercranial hypertension (a build-up of pressure in the head) so I was given a referral to a neurologist.

The wait time to see the NHS neurologist was 43 weeks so I paid £180 to see a neurologist at a private hospital. He said he didn’t think I had intercranial hypertension and said I needed a neck MRI. I had been told this previously but my GP had refused to refer me saying I’d already had too many tests done, so my neurologist wrote him a letter and I had the scan which came back normal. If I was relying on seeing the NHS neurologist, I’d still be waiting now.

My neurologist concluded I have migraine which might have been triggered by menopause and that I should be trying HRT again. He said women with migraine shouldn’t just be denied HRT as a blanket rule and that we should be able to try different doses and different types of HRT. I’m part of a menopause Facebook group and lots of women with migraine say they’ve been denied it. I’m now on the lowdose HRT gel.

I’m also trying to get better treatment for my migraine – I’ve been told I’m eligible for the new calcitonin generelated peptide (CGRP) treatments but I can’t access them where I live. I can’t take other preventive medications like beta-blockers as I react badly to them. I also spent £200 on acupuncture which did nothing. It turns out my local authority doesn’t even have a neurology department, a visiting neurologist travels to the area.

I’ve also been referred to mental health services multiple times as doctors keeping saying the issue is anxiety, but each time I’ve been told I clearly do not have a mental health condition, I have a physical illness.

What needs to change for people with migraine

I think people need to not dismiss how debilitating migraine is. I used to be a police officer and drive a lot. I completely took my freedom for granted. Now I’m worried I could have a debilitating migraine attack when I drive a few miles to the local shop. I think having migraine can close your world down so much and there’s very little peer support. However, there are so many people out there with migraine. For anyone looking for peer support, I really recommend the Facebook groups Menopause Warriors and Migraine with Aura Worldwide.

I also think it’s important that people know that migraine can develop later in life. Of course it’s important to get new migraine symptoms checked out, but based on my conversations with people in the same position, it’s actually a lot more common than you might think.

HOW MY MIGRAINE SYMPTOMS HAVE CHANGED WITH AGE

BY ROBERT TWITCHIN, WHO LIVES WITH MIGRAINE

I have read that migraine attacks can lessen as a person gets towards retirement age, and, in some very fortunate cases, perhaps disappear entirely! Unfortunately my migraine has not disappeared, although it has changed significantly throughout the course of my life, from the age of 23 to 74. In this article, I will lay out the pattern of my migraine symptoms to illustrate how they have changed over some 51 years.

My original migraine symptoms

As a young man of 23, to when I was fortunate enough to be able to take early retirement at the age of 58, my migraine symptoms were pretty “textbook” and totally predictable. Initially, there would be 20 minutes of blurred zig-zag vision on my left side. This was, of course, my warning of the attack to come. I then took 1 gram of paracetamol (equivalent to two tablets) and my vision would clear before the headache started. The pain tended to be on top of my head on the right side and I’d rate the pain level between seven and nine out of 10.

Bright light of course was to be avoided, but thankfully, I never felt nauseous. I would either take to my bed or a reclining chair and try and “sleep it off”, as they say.

I took more paracetamol every four hours. By the following morning, the acute headache had gone, and I was left with what I have always called my “residual head”. Here I would have no acute head pain unless I either bent steeply forward, or coughed or sneezed. If I did any of these three actions, there was a severe knife-like pain in the side of my head.

This “residual head” remained with me for about four or five days, during which time no further medication was required (although I had to remember not to bend forward, cough or sneeze!)

I would have three or four of these episodes over a 12-month period, all pretty much following the same pattern.

My symptoms remained the same for about 30 years. During this time I ate a typical varied English diet, and always enjoyed red wines, caffeinated coffee, caffeinated tea and various cheeses, with no awareness of their potential as triggers. I admit that back then I had no idea back how important it is to drink plenty of water, and so dehydration must have played a part in my susceptibility to migraine attacks.

As far as possible triggers are concerned, I suspect insufficient water intake, heavy red wines, strong cheeses and caffeine. I will add that I am a person who gets a bit stressed and anxious about things in general, and so I do feel that for me personally, stress and anxiety are the paramount triggers for the onset of migraine.

How my migraine changed when I retired

By the time I reached the age of 58, I was very fortunate to be in a position to take early retirement from my full-time career as a naval weapons engineer, so happily, I left work and began this fresh new period of my life.

I should point out that at this stage, I had stopped drinking all types of red wine, stopped eating strong cheeses and avoided consumption of caffeine wherever I could, and I was also drinking a lot more water.

I was particularly mindful of what I had read about the likelihood of migraine periods easing off in older people, and sure enough, my regular migraine attacks did lessen, and quite significantly.

However, not long afterwards, a new pattern of headaches began. Instead of my usual and predictable migraine rhythms, my migraine headaches would start in the middle of the night whilst I was sleeping. I would go to bed as usual, and be woken between 2am and 3am by an acute headache. The pain would be an eight out of 10 and be on the top of the right side of my head.

This was very difficult; as I was asleep, there was no short preceding spell of blurred vision to give me warning, so I couldn’t quickly take some paracetamol. I would take the medication swiftly on waking, but the tablets were much slower to take effect as digestion can slow down during a migraine attack. I would have to endure the painful acute headache for more than an hour and a half before there was any reduction in the pulsating pain.

I should say that by this stage of my life, I had attended a couple of seminars arranged by The Migraine Trust, where GPs specialising in migraine had advised adding 500mg of Naproxen anti-inflammatory tablets to the initial dose of painkillers. So, in the middle of the night I would take two Solpadeine Max tablets (which contain 12.8mg of codeine) and a Naproxen anti-inflammatory tablet. (Codeine is no longer recommended for migraine because it is addictive and can make headaches worse.)

I also discovered that some painkillers contain caffeine because it is meant to speed up their absorption in the body. However, caffeine can be a migraine trigger and from speaking to my GP at length, I discovered that the advisability of including caffeine in migraine medication is a subject for debate and there is disagreement amongst the medical profession.

My middle of the night migraine attacks were occurring three or four times a year for two years after which they subsided rather quickly. I then started to experience some quite different headache symptoms which, thankfully, have been much milder and easier to live with.

My latest migraine symptoms

For the past 13 Years, from age 61 to the present day age 74, my migraine attacks involve very mild to moderate head pain (still on the right side and on top of my head, and often behind my right eye).

Whilst I’m in a “migraine period”, a very mild head pain shows itself periodically throughout the day and evening. The pain sometimes increases to between a three and a five out of 10, and is often centred behind the right eye.

These relatively low pain levels are of course a distinct improvement on previous years, which I am very grateful for, but these mild pain levels can last for many days (from 14 to 43 days).

Fortunately, I can manage to live with these low levels of head pain largely without medication, and only now and then I take paracetamol and anti-inflammatory tablets.

I should also explain that with the onset of these chronic but mild head pains, I did get my spectacle prescription checked and saw my GP, who reassuringly referred me for both MRI and CT head scans. These investigations were able to eliminate any possibilities of something more “sinister” like a brain tumour.

So finally, returning to the title of this article and how our migraine symptoms can change as we age, I can say that yes, since I have progressed to the age of 74, my migraine symptoms have changed, and thankfully, for the better. However, it has been a somewhat rocky road to get there!

I hope that fellow migraineurs might find my story helpful when dealing with their own particular patterns of pain.

My middle of the night migraine attacks were occurring three or four times a year for two years after which they subsided rather quickly.

RESEARCH ROUND-UP

Research is crucial to improving our understanding of migraine, what causes it and how we can treat it. While migraine research is limited compared to many other health conditions, we are hugely grateful to the scientists dedicating their careers to untangling this complex disease and other headache conditions. Read on to see some snippets of migraine research that has been published in recent months, as well as information on how you can take part in research trials.

The impact of migraine on university students

Researchers at University College Dublin conducted a systematic review and meta-analysis of previous research to estimate the prevalence of migraine in university students. They found that almost a fifth (19%) of university students have migraine, with the condition being more common in women (23%) than men (12%).

Migraine can have a big impact on a person’s education, and the researchers note that the impacts on university students range from lower academic performance to increased likelihood of psychological health conditions. The researchers also write that migraine prevalence among university students has increased and that most students are managing their migraine with medication.

The researchers suggest: “Enhancing migraine recognition and management at university may have positive implications for an improved educational experience, as well as for the burden migraine currently incurs, both in university and beyond.”

They also note that we need more research into how migraine affects students in low and middle-income countries and how they manage the condition.

See the full study: Flynn, O., Fullen, B.M., Blake, C. Migraine in university students: A systematic review and metaanalysis. European Journal of Pain (2022)

Alcohol as a migraine attack trigger

An international team of researchers looked at whether drinking alcohol is connected to migraine attacks up to two days after drinking in people with episodic migraine. They assessed the data on 487 people over the age of 18 who had episodic migraine and had been tracking their headache symptoms and alcohol symptoms for 90 days or more.

The team found, perhaps unexpectedly, that alcohol had no significant effect on the likelihood of a migraine attack happening in the 24 hours following consumption. Between 24 and 48 hours after consumption, there was actually a slightly lower likelihood of a migraine attack occurring.

The researchers also found that people with migraine tend to drink less than the general population, and that people with migraine with less frequent migraine attacks drank more alcohol than people with more frequent attacks. The team notes that there appears to be a complex relationship between alcohol and migraine and that the effects can vary greatly from person to person.

See the full study: Vives-Mestres M, Casanova A, Puig X, Ginebra J, Rosen N. Alcohol as a trigger of migraine attacks in people with migraine. Results from a large prospective cohort study in English-speaking countries. Headache (2022)

Warning signs of a migraine attack

The very first stage of a migraine attack is known as the prodrome or premonitory stage and can involve symptoms such as tiredness, feeling thirsty and frequent yawning. In 2022, researchers looked at 12,810 people in the US with migraine who were involved in a web-based, long-term study called CaMEO.

Of the participants, 10,800 (84%) said they had experienced at least one prodrome symptom, with 6,129 (57%) of those people considering these symptoms to be a warning sign of a headache to come.

The most common prodrome symptoms reported were neck pain or stiffness (51%), vision problems (49%), feeling dizzy or light-headed (41%), difficulty thinking or concentrating (40%), feeling irritable or moody (36%), and feeling tired or weary (33%).

The researchers also found that people who reported migraine warning symptoms were more likely to have moderate to severe anxiety, moderate to severe depression, higher monthly headache days and greater interictal burden. Interictal burden can be defined as loss of health or wellbeing due to a headache condition while headache-free. The team notes that we need more research to better understand prodrome symptoms in migraine at both the individual and population levels.

See the full study: Todd J. Schwedt, Stephanie J. Nahas, Kristina M. Fanning, Janette Contreras-De Lama, Brittany L. Jordan, Michael L. Reed, Dawn C. Buse, Richard B. Lipton. Characterizing Pre-headache (Prodrome) Features of Migraine Attacks: Results From the CaMEO Study. Neurology (2022)

Get involved

Are you interested in being part of migraine research?

There are a number of research trials you can get involved in, focusing on areas such as medication overuse headache, visual snow and migraine and sleep. To find out more and take part, head to migrainetrust.org/clinicaltrial-research-opportunities

MY EXPERIENCE OF LIVING WITH MIGRAINE

BY CHRISTINE SEATON, WHO LIVES WITH MIGRAINE

I was told that due to the type of migraine I have, preventive treatment would be pointless. My new GP thought this was “insane” because it set back my treatment months if not years. It was only when my depression got worse and I saw my new GP just by chance that I got a different kind of healthcare. I got a GP that really helped me through my treatment and we got started on preventive medication. She was honestly a lifeline.

I was advised that it was a long road ahead. During the course of this time I discovered The Migraine Trust which really helped. It helped to educate me more on my condition and helped me educate others. It could explain things better than I ever could. It was through The Migraine Trust that I heard about calcitonin gene-related peptide (CGRP) drugs being introduced and I spoke about this with my GP who reached out to the Neurology department on my behalf.

We had already worked our way through many a list of the preventive medications and Neurology got back with their criteria. I’ve now landed on Topiramate on the highest dose as it’s had the most even, if minimal, success (with the least side effects for me). I also got through the long waiting list to see Neurology and I am now there. We are trying the Botox treatment which has had mixed results for me. I see Neurology every three months for the treatment and keep a migraine diary. Prior to this I

used an app called Migraine Buddy which was a good tool.

Living with menstrual migraine

I think my main struggle is menstrual migraines. I am on the mini pill which used to stop my cycle and occasionally still will but when I get a normal cycle my menstrual migraine will hit me like a truck. Although I feel the Botox has helped maybe any other possible unrelated migraines, the menstrual one is just an untamed beast. I recently read an article from The Migraine Trust that said menstrual migraine is less likely to be reactive to treatments which made me a little sad because for me it’s the migraine that comes with all the bells and whistles, such as aura and nausea etc, and often fills me with little hope for my future. However, I do feel that compared to how things were when I started treatment, people with migraine like myself are now in a better spot. Five years ago if I was asked how I felt I wouldn’t have been positive. But now we have more treatments, more research is happening and our message is getting out there. My employer thankfully has been very supportive of me and without that I wouldn’t have managed. I hope that more and more employers out there support their staff with migraine who are having similar experiences.

I feel like I have given up a lot to my migraine. For example, just from being exhausted when I’ve been ill or from the medication. It really does take it out of you and a lot of people don’t really understand that. I choose not to drive for fear visual aura could spring up at any time and I am always tired.

Why I’m raising money for people with migraine

My Grandpa passed away recently and he always loved giving to charity and he has always inspired me to do good and give back. Part of what has encouraged me to fundraise again for The Migraine Trust and take part in the Virtual Easter Run is to keep his legacy alive and to give back to a charity that has helped in my lowest moments. I want to help them continue to do the amazing work that they do for people like me.

My best friend is doing the run with me and we’re doing it on Easter Sunday (which is also actually my birthday and I can’t think of a better way to spend it, and yes we are dressing up!) The Migraine Trust have for sure inspired me that there is hope and if I can help even a little by raising some money to aid them in the work they do then I have done my part.

You can support Christine’s fundraising at justgiving.com/fundraising/ Christine-Seaton5

I’m 32 now and I was in my early twenties when my migraine attacks started to get progressively worse. Back then, my treatment was essentially non-existent. I remember going to a GP who simply prescribed me co-codamol and I was on it for the longest time. Then after a while of not being able to cope I was eventually introduced to Triptans, specifically Rizatriptan.

MARCH FOR MIGRAINE 2023

Last year we launched March for Migraine, a step challenge to raise awareness of migraine as well as funds to support people living with it. Together, our marchers raised £2,890 by walking an epic 300,000 steps each over the month of March. No mean feat, this equates to roughly 150 miles and is even more impressive as most of our marchers were battling migraine themselves.

This year, March for Migraine is back! Team Migraine will be taking on the challenge of 190,000 steps in March. This number represents the number of migraine attacks that take place in the UK every single day.

We’re incredibly grateful to everyone taking part this year! At the time of writing, we have over 50 marchers signed up and readying their walking shoes.

“I’ve suffered from migraine attacks for as long as I remember and they’ve never been taken seriously by professionals until quite recently,” said Lisa, who took part last year.

“I came across The Migraine Trust and signed up to their newsletter hoping for some more information about how to deal with them. In a recent newsletter, there was a bit about March for Migraine and I thought it’s such a good opportunity to raise some money for a great cause.”

“I wanted to take part in March for March to raise awareness of how disabling and debilitating migraines are,” said Ingrid (pictured left), who also got involved last year. “I had an explosion of migraines in 2018 and haven’t had a break from them yet… prior to becoming unwell I had no idea how common and disabling migraines are.”

How to take part

You can keep up to date with March for Migraine’s progress on our website and by heading to our social media channels (@MigraineTrust). If you’d like to get involved, take on your own step challenge or fundraise for The Migraine Trust in any other way, please don’t hesitate to get in touch with our fundraising team at fundraising@ migrainetrust.org.

2022 March for Migraine fundraiser Susan said:

“When I saw the March for Migraine challenge my initial reaction was that it would be easy, but that I would find it difficult to ask for sponsors. Friends and family knew of the impact migraine had had on our lives over the years –cancelled days out, spoilt holidays, employment difficulties due to caring responsibilities and many days lost of schooling.

“Going for a walk every day seemed a very pleasurable way to raise funds for The Migraine Trust, whom I have supported for many years. Walking through the month of March was a joy. I am lucky to live in the countryside and watching winter change to spring in the fields and hedgerows was a great experience, for body and soul.

“The only drawback was that if I had to miss a day for any reason I had to walk much further on other days that week. It was those days that I felt justified seeking sponsorship! By the end of the month friends and family were impressed that I had stubbornly kept on going, raised money for a good cause and on a purely selfish note got fit and ready to spend four days walking part of Offa’s Dyke Path in April!

“March for Migraine – you’ll enjoy the challenge.”

ARE YOU LOOKING FOR YOUR NEXT CHALLENGE?

Daisy’s coast to coast walk

Daisy, who lives with chronic migraine, has found that the low-impact activity of walking has really helped her migraine. Later this year, she will be taking on an epic coast to coast walk to raise money for people living with migraine.

“I realised that my usual annual summer migraine hell hadn’t really happened… I usually spend the autumn slowly recovering from a bad bout of migraine over the summer, but [the year I started walking] that hadn’t happened. The only thing that was different was the walking,” said Daisy.

“The walking is clearly helping my migraine attacks and so I set my sights on a much bigger challenge. I roped in a friend who also wanted to improve their fitness and decided to start

training towards walking the journey I had always wanted to do, Wainwright’s Coast to Coast walk; nearly 200 miles from the west coast of St Bees in Cumbria, through three national parks of the Lake District, the Yorkshire Dales and the North York Moors through to Robin Hood’s Bay on the east coast in North Yorkshire.

“Having this epic challenge ahead is helping me keep going on my training for it, helping my stamina and my migraine, and what better thing to do than to use this challenge to raise money for The Migraine Trust?”

Are you interested in following in Daisy’s footsteps and raising money for The Migraine Trust? We have a range of challenge events you can get involved in, from a bucket list skydive to a scenic half marathon to a once in a lifetime overseas challenge. You can

find a list of challenges to take part in on our website at migrainetrust.org/ take-on-a-challenge-event or scan the QR code below.

If you don’t fancy any of these challenges and want to design your own, we’d love to hear from you! Whether it’s a sponsored walk, a bake sale or a virtual challenge, you can get in touch with us at fundraising@ migrainetrust.org and we’ll give you helpful tips and support.

How you can support future generations with migraine

Legacy gifts transform our work. We are very grateful to the many supporters who leave us a gift in their Will – typically half of our work is possible every year thanks to the generosity of these supporters. Last year our legacy supporters helped us to fund vital research, to answer thousands of phone calls from people needing support and to reach over 5,000 people with online events led by experts as we covered topics from migraine and young people through to sleep issues and rare types of migraine.

If you are interested in leaving a legacy or gift in your Will to The Migraine Trust we would be incredibly grateful. Leaving a legacy or gift in your Will is a great way to help someone or something you care about. Of course, you need to ensure that your family and friends are taken care of first, but if you are also able to leave a gift to The Migraine Trust you will help us to support not only the 10 million people in the UK who are living with migraine now, but also future generations who are yet to be diagnosed.

If you have questions about making your Will and leaving a legacy gift or would like to let us know your plans, please don’t hesitate to get in touch with us at legacy@migrainetrust.org and our friendly team will be able to help you. You can also find more information about leaving a legacy gift at migrainetrust.org/legacy.