P14-15withGrowingP5-7WeekAwarenessMigraine2022upmigraine Issue 125 | September 2022 migraine news New migraine treatments P10-11 Living with migraine at age 11 P12-13 Hilary’s story P16-17
11 14 Growing
Welcome from the Chief Executive
10 New treatments for migraine 12 Living with
4th Floor, Mitre House, 44-46 Fleet Street London EC4Y 1BN Tel: 0203 9510 150 Email: www.migrainetrust.orginfo@migrainetrust.org @migrainetrust themigrainetrust
Welcome to the latest edition of Migraine News, which is packed with personal stories, information on new treatments, round-ups of the latest migraine research and more.
Trustees Michelle Walder (Chair) Dr Shazia Afridi MBBS MRCP PhD Professor Fayyaz Ahmed MD MCRP MBA David Cubitt Gary ProfessorGeorgePeter Goadsby MBBS MD PhD DSc FRACP FRCP Dr Kay Kennis Sir Denis O’Connor Dr Louise Rusk Sir Nicholas Stadlen Wendy Thomas Mike Wakefield
As we step into Migraine Awareness Week 2022, we want to create as much noise as we can about migraine, its impact, and what urgently needs to be done to help the one in seven people affected by it.
We’re also very excited to be hosting The Migraine Trust International Symposium during Migraine Awareness Week this year. This prestigious event brings together leaders in the field of migraine research from all over the world and will be the first in-person meeting since Covid. We are also holding a patient information day on the final day, giving people with migraine the opportunity to network, ask questions and learn more about the condition they live with every day. Aside from Migraine Awareness Week, I’m delighted to see other areas of the charity growing. We have a brilliant new member of our Information and Support Services team, Mags, and have recently launched a Live Chat service for those seeking help and support on our website. If you or a loved one is struggling with migraine, please don’t hesitate to get in touch with us on 0808 802 0066 or via our website (migrainetrust.org). We couldn’t do what we do without your continued and generous support, so thank you.
A registered charity in England and Wales (no. 1081300) and Scotland (no. SC042911) A company limited by guarantee registered in England (3996448).
migraine 16 Hilary’s story 18 Research round-up ContentsNEWS 2
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. team Managing migraine in higher education migraine age up with
Our focus this week is on children and young people with migraine. Many children and young people are not diagnosed quickly or do not get the treatments they need and migraine can, of course, have a huge impact on their education, friendships and mental health. You can find out the true significance of this impact by reading Ivy and Tristan’s stories later in the magazine. This week, we are launching the results of our research into migraine in children and young people, which you can read on our website. A staggering 97 percent of children have never been taught about migraine at school, while a third say the treatment of their migraine is poor. This simply is not good enough. We hope the report will raise much-needed awareness among schools, healthcare professionals, parliamentarians and wider society. But that’s not all – in the coming weeks and months we will also be launching exciting new resources for medical professionals, schools, parents and children themselves to help improve quality of life for young people affected by migraine.
2 Welcome 3 News 4 Meet our newest
members 5 Migraine awareness week 8 Q&A:
The information and views given in this journal are not necessarily those of The Migraine Trust nor endorsed by The Trust. ISSN No. 0544-1153 © Migraine Trust 2022
Best wishes, Rob Music
at
Bringing migraine to parliament
Whether you need information about migraine, its symptoms and treatments, you’re struggling to access healthcare, or you’re in need of emotional support, you can chat to us online with one of our expert advisors. You can access our free Live Chat service by heading to our website (migrainetrust.org) and clicking the purple speech bubble in the bottom right-hand corner.
If you’d like to make a noise about migraine and help us drive real change, why not contact your local parliamentarian? You could tell them about issues people with migraine face, such as lack of access to treatments and care, isolation, and difficulties at work. You can find a template letter on our website at migrainetrust.org/better-migraine-care
We’re delighted to be hosting the 18th Migraine Trust International Symposium (MTIS) in London this month (8-11 September). Leading researchers from the migraine community will come together faceto-face for the first time in three years. MTIS is the world’s longest established headache conference and involves teaching courses, opportunities to present the latest scientific research around migraine, as well as presentations about the latest treatments. The final day also gives members of the migraine community the opportunity to come together, learn and share their own experiences of living with migraine.
Did you know that we have launched a live chat service on our website?
It was fantastic to talk to so many parliamentarians at our drop-in events in the English, Scottish and Welsh parliaments earlier this year as we launched our new migraine toolkits for MPs, MSPs and MS/ASs. Our toolkit was developed in partnership with parliamentarians affected by migraine and contains a range of useful information such as how to support constituents with migraine and how to strengthen migraine care with local health leaders. Many of the parliamentarians who joined us have personal experiences of migraine, highlighting just how important it is to spread the word about migraine and engage with those who haven’t been personally impacted as well. We’re excited to join MLAs in Belfast next month to launch our migraine toolkit in Northern Ireland too.
The toSymposiumTrustMigraineInternationalcomesLondon
INTRODUCING OUR NEW LIVE CHAT SERVICE
If you’d prefer to pick up the phone or send us an email, you can call us on 0808 802 0066 or send us a message via our online form at migrainetrust.org/contact-us
News 3
I enjoy empowering people by providing information to help them to move forward when they’re feeling stuck. I have a background in education and training, and worked for almost five years as a helpline advisor for another health charity before joining The Migraine Trust team. What do you get up to in your spare time? I find being in nature very restorative, whether that’s a quick walk around the block or a hike in the countryside with my partner and our Cocker-spaniel. I also enjoy reading, writing, and singing in a choir.
MEET OUR NEWEST TEAM MEMBERS
MEET THE TEAM 4
IVOR (HEADSTOCKDALEOFFINANCE AND OPERATIONS)
I love sport, particularly cricket and rugby. I’ve travelled the world watching rugby, and as for cricket, I take my 93 yearold father to the Test match at the Oval each summer, so am looking forward to that coming up in September. I also love live music and, of course, theatre which I attend regularly with my wife and daughter. We also have an extremely energetic dog, so I enjoy long walks in the countryside near my home with Zena.
In the Finance part of my role I look after the financial management and strategy of the charity. I also look after our trading subsidiary which runs the world’s longest established international headache conference and that’s coming up in September this year so that’s really exciting. In the Operations part of my role, I’m responsible for HR, IT and other admin. What were you doing before you joined us? I was working at the Young Vic theatre (another registered charity) where I was Finance Director for three and a half years. I saw the theatre through the pandemic by using the furlough scheme when we were closed for so long and successfully applying for £1.8M of Covid relief funding. I’m really proud that the theatre survived the crisis. Once we were fully back up and running, I was ready for a new challenge, so here I am at The Migraine Trust!
Tell us about your role
What do you get up to in your spare time?
TellADVISOR)usabout
your role I answer telephone, email and online enquiries to the helpline. We provide information and support to people affected by migraine. One moment we might be talking about treatment options and how to access healthcare support. The next we might be exploring ways to reduce the impact of migraine on someone’s quality of life. What were you doing before you joined us?
MAGS (INFORMATIONROBINSONAND SUPPORT SERVICES
We’re excited to introduce you to our latest new recruits, Ivor and Mags. Ivor has joined us as Head of Finance and Operations following the retirement of Adam Speller, who was with The Migraine Trust for 17 years. Mags has joined us as an Information and Support Services Advisor and is busy answering requests to our helpline.
COMMUNICATIONS
Supporting children and young people with migraine
Earlier
MIGRAINE AWARENESS WEEK 2022 BY
working in schools. The results highlighted some worrying trends and showed many children are not getting enough support. Thirty-three percent of children said the treatment of their migraine is poor, while only 8 percent said it was good and 0 percent said it was excellent. Meanwhile, a quarter had never even heard of a headache diary, something that all patients should be advised to keep as a diary is crucial to identifying and managing triggers, symptoms and medication. Only a fifth said their school has the information about migraine to help them manage it while at school and 97 percent said they’d never been taught about migraine at school, even though it is more common that asthma, diabetes and epilepsy combined. Migraine can have a huge effect on children’s mental health, perhaps even more so than in adults. Seventy-two percent of children who responded to our survey said their migraine
CAMPAIGNS 5
Migraine Awareness Week (4-10 September) is a very important week in The Migraine Trust’s calendar. It is a time to shout loud about migraine and gives us a great opportunity to raise awareness through news coverage and social media campaigns. This year, we will focus on migraine in children and young people – read on to find out more about our plans and how you can get involved. The impact of migraine on young lives this year we ran surveys for children and young people with migraine, their parents and carers and people RACHEL BAXTER, OFFICER
The parents we heard from are having daily battles with school to get their children the right care, support and allowances to help them carry out their studies and achieve their potential while also managing their migraine. We hope that providing resources to schools and raising awareness among school staff will help get children in the UK the support they need. Interestingly, staff training and action plans are often in place for other conditions that affect young people, such as autism, epilepsy and asthma, but migraine is being overlooked.
6 CAMPAIGNS
We were sad to hear how little support many children and teens are receiving at school, with some affected by stringent school rules such as not being able to drink water during lessons and being sent home for multiple days after vomiting, even though this is not necessary for children with migraine.
made them feel worried, while a quarter said they never talk to their friends about their migraine. Unsurprisingly, 90 percent of children said migraine makes it harder to do their schoolwork.
One way you can help us make life easier for children and young people with migraine is to help us raise awareness.
How we plan to help This week, we are launching a new report which highlights the issues faced by children and young people with migraine and proposes policy solutions for how they can be addressed. We are also launching new sections of our website aimed at children and young people, their parents, carers and siblings, healthcare professionals and people who work in schools. What’s more, we’ll be producing suites of printable and downloadable materials for all of these audiences. We also hope to develop training modules for GPs and people working in schools and build support groups for both parents and carers and young people with migraine, as we know too many people feel isolated and need someone to talk to about their condition. We also hope to reach more children and teens by expanding our digital channels – we’ll be creating some fun and accessible videos about migraine on YouTube, and will also be joining TikTok. If you have children, grandchildren or friends who could benefit from resources aimed at children and young people, they can give us a follow @migrainetrust.
A worrying 76 percent of school staff said they do not have the information, resources or processes to help children with migraine. Only 17 percent of parents and carers feel completely satisfied with the support they get from school to manage their child’s migraine.
We’ve also been running focus groups with both young people and parents and carers of children with migraine.
Migraine is too often misunderstood or neglected in society, and the more people aware of its impact the better. This week, we’ll be posting about children’s migraine across our social media channels – we’d really appreciate any shares, or you could write your own posts about migraine and your personal experiences of it.
What you can do to support children and young people
7 CAMPAIGNS 7
If you work with children or young people, educating yourself and those around you about migraine can go a long way. Talk about the symptoms, treatments and the impact it can have on a person’s life. If you have migraine yourself, share your own experience of living with migraine with colleagues. If you’d like to learn more about migraine, visit our website at migrainetrust.org. If you work in a school, you could share our resources with fellow members of staff or even host an assembly or personal, social, health and economic education (PSHE) lesson about living with Whethermigraine.it’sa Tweet, a conversation or a donation to us, we are hugely grateful for any and all support you give us. We couldn’t expand our work to better help children and young people with migraine without your commitment and generosity.
Another great way to help young people with migraine is to get in contact with your local MP or write to your local newspaper. This can trigger action from parliamentarians and also spread the word about migraine in the news. You can download template letters on our website.
AND MAGS ROBINSON, INFORMATION AND SUPPORT SERVICES ADVISORS NEWS 8 INFORMATION AND SUPPORT
This depends on the severity and frequency of your migraine attacks and the impact the condition has on you as an individual. Students (and those applying for places) in England, Scotland and Wales whose medical condition satisfies the definition of disability are protected from unlawful discrimination by the education provider under the Equality Act 2010 (the Act). Different legislation applies to students in Northern Ireland (see below). Under the Act, a disability is defined as a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities. To meet the definition of disability, the condition must be likely to last for at least 12 months or indefinitely, and affect activities like reading, writing, talking, following instructions, using a computer, preparing written documents, keeping to a timetable, walking, travelling, and taking part in social activities.
Assessments: Exams and coursework deadlines can trigger stress and migraine attacks. You may miss a deadline or may be unable to complete an exam due to a migraine attack. Your education provider can support you by making adjustments such as rest breaks, extra time, a separate room for exams, flexible deadlines or alternative assessment methods.
Should my education provider recognise migraine as a disability?
Your education provider is then legally required to support you by: • ensuring that you are not treated less favourably or placed at a substantial disadvantage when compared with other students because of your disability • making reasonable adjustments to the learning environment, practices and policies to allow you to participate in education without being put at a substantial disadvantage due to your disability
Your GP, neurologist or headache nurse can advise on whether your condition satisfies the requirements of being a disability. Their assessment should ignore the effects of any medical treatment. They can also provide supporting information about the impact of your condition on your education for your education provider.
What reasonable adjustments can my education provider put in place to support me?
Starting higher education can be an exciting and stressful time for young people as they take on new studies, move away from home and build new relationships. Navigating university while also managing migraine can be difficult and that’s why we’ve answered some common questions we get asked about migraine in higher
BY:
STEPH WEATHERLEY
There are many common reasonable adjustments that education providers can make to support a student with migraine such as: Equipment and grants: if you are classed as disabled and require equipment for exams or assessments, the disabled students’ allowances scheme (DSAs) can support you with the cost of purchasing such equipment.
Q&A:education.MANAGING MIGRAINE IN HIGHER EDUCATION
If you or a loved one has questions about migraine or is in need of support, you can contact Steph and Mags via our 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.
If you are dissatisfied with the outcome of an internal complaint, you may be able to use any of the conciliation services applicable to you. If you are studying in a university in England or Wales, you can complain through the Office of the Independent Adjudicator (OIA). The OIA is a mediation and conciliation service that helps students to resolve disputes with an institution. Further information is available at oiahe.org.uk
If you are studying in Northern Ireland you can contact the Equality Commission for Northern Ireland equalityni.org
If you are studying at a university or higher education institution in Scotland, you should review their internal complaint procedure. If your complaint is not resolved, you can make a complaint to the Scottish Public Services Ombudsman. For more information visit spso.org.uk
It may be beneficial to discuss a problem informally in the first instance. You should consider contacting a student disability adviser or course tutor depending on the nature of the issue. Keep a record of any issues raised informally and the outcome. If the issue cannot be resolved informally, you can consider making a formal complaint. A student disability adviser can advise you of the complaint procedure to follow, the complaint should be put in writing. Your healthcare professional may be able to write a letter of support for you to your education provider. It may be useful to familiarise yourself with your education provider’s policies and procedures.
Regular breaks: Breaks give time to stretch, relax muscles and manage trigger factors. They are particularly beneficial, for example, if you are working at a computer. It may be helpful to take regular breaks. My education provider will not support me, what can I do?
NEWS 9 INFORMATION AND SUPPORT
If you are studying in a further education college (but not a sixth form college), you can make a complaint to the Education and Skills Funding Agency. More information is available at gov.uk.
Lighting: Glare can be a major migraine trigger as the eyes try to adapt to visual disturbances. It’s important to understand and control glare where possible as this can minimise attacks. Glare can come from computer screens, windows, overhead lights etc. A lighting consultant may be able to provide support to a student and their institution if this is an issue.
Gepants There are currently three gepants (atogepant, rimegepant, ubrogepant), with others in development. Gepants are calcitonin gene-related peptide (CGRP) receptor antagonists. Based on the National Institute for health and Care Excellence (NICE) review schedule, they could be approved in early March 2023.
New acute treatments
Acute treatments need to be taken when a migraine attack occurs and they work better when taken early.
Current acute treatments include triptans (almotriptan, eletriptan, frovatriptan, naratriptan, sumatriptan, rizatriptan, zolmitriptan), NSAIDs (e.g., aspirin, ibuprofen, naproxen), and over-the-counter medicines, like paracetamol. They are frequently taken with anti-sickness medicines (e.g., metoclopramide, prochloperazine, domperidone). However, for some people as with all medicines, these may not be effective, well tolerated or possible because of other conditions. For example, triptans, which also cause blood vessel constriction, need to be avoided in people with certain vascular or heart conditions and people with asthma or stomach ulcers need to avoid NSAIDs.
BY RIA SPECIALISTHEADACHEBHOLA,NURSE
New acute treatments known as gepants and ditans are currently being considered for use in the UK. Their advantages include fewer side effects and safety in the presence of heart conditions where triptans are not an option. The gepants and ditans are tablets which can be compared to triptans, where they aim to stop or relieve a migraine attack. They should be taken at the start of an attack, as early as possible, to treat pain and other migraine symptoms (e.g., nausea, light/noise/smell sensitivity). However their safety has not been studied in pregnancy and they are therefore not recommended for use in pregnancy.
NEW TREATMENTS
INFORMATION AND SUPPORT 10
Acute treatments
The availability and access to new migraine treatments will make a difference to the lives of people affected by the debilitating impact of migraine, both with and without aura. Understanding migraine and developing better medicines to treat attacks will offer hope and real change to many people whose lives are restricted by migraine.
Preventive treatments
AND SUPPORT 11
The most recent preventive treatments approved for migraine are the three calcitonin gene-related peptide monoclonal antibodies (CGRP mAbs). They are erenumab, fremanezumab and galcanezumab. These are injections designed for self-treatment at home, once per month. A fourth one (eptinezumab), will be given intravenously (in the vein) once in a three month period, and is currently being evaluated by NICE.
There is currently one ditan, lasmiditan. They should be used early to treat an attack, as with a triptan. However, ditans differ in the way they work. Ditans work by binding to one of the three receptors that triptans bind to. They work on a specific type of receptor, the 5-HT 1F serotonin receptor. This receptor is found on nerve cells that carry the pain signals of a migraine headache. These nerve cells can be found in the brain and on the membranous coverings of the brain. Like the gepants, they do not constrict or tighten blood vessels. This makes them an option for people whose treatment options are restricted by cardiovascular conditions. It will also be an option for those who have not found triptans effective or had problems with their side effects. What are the side effects?
Gepants and triptans both bind to the blood vessel. However, gepants, unlike triptans, do not tighten the blood vessel; they instead prevent it from dilating. This makes them safer for people with heart conditions, blood pressure problems or cardiovascular disease.
Compared to the established acute treatments, gepants don’t appear to cause rebound or medication overuse headache. On this basis, they may be considered for prevention, depending on the evaluations from NICE.
The most common side effects of the gepants in clinical trials were nausea, fatigue and constipation in a relatively small number of people. HowDitansdothey work?
At the start of the migraine process, CGRP is released by the nerves which helps to prolong and sustain a migraine attack. Gepants are small molecules that bind to the CGRP receptor on the trigeminal nerve to block this effect. Triptans on the other hand, suppress the release of CGRP by acting on some other receptors.
Lasmiditan can affect concentration and cause dizziness and tiredness. Therefore, tasks like driving are not advised up to eight hours after taking it.
What are the side effects?
How do they work?
Benefits of new treatments
It has been approved in the US as an acute treatment but is not currently available in the UK.
Availability
TREATMENTS FOR MIGRAINEINFORMATION
Preventives aim to reduce the overall number of migraine attacks, the severity of attacks and how long they last.
PATIENTchildhood.VOICE 12
Tell us about Tristan’s migraine
LIVING WITH MIGRAINE AT AGE 11
The lack of support is so difficult, there’s also just nothing out there for parents where I live. I actually recently went along to a support group for autistic children and had a cup of tea with the parents. I found it really helpful as we’re going through the same battles with school, CAMHS, and trying to get the right support. What is it like to see Tristan live with migraine?
I’ve had to stop work and his 9-year-old little brother has developed severe anxiety because of it. His sister is only one and a half so it hasn’t affected her. Tristan’s step dad keeps us all together and is really becauseimpactedFinanciallysupportive.it’sustheservice and care isn’t there from the NHS, we had to do his first MRI scan privately. He’s currently having no psychological support – there’s a two and a half year wait for support on Children and Adolescent Mental Health Services (CAMHS). I think if he’d had psychological support two years ago, he’d probably be dealing with everything much better now. He’s traumatised from being in hospital and from his episodes – he recently passed out in the park and it was traumatic for him and the support for him just is not there.
Tristan has had migraine attacks for about three and a half years. They started as a headache out of the blue. We did all the usual things like going to the opticians multiple times, but nothing was found. At the two year mark they really escalated. Tristan started experiencing chronic headache, feeling dizzy and one time he even fainted. From there they got worse and we’re still none the wiser. We’re at crisis point. I’ve just cried and cried. Because he’s not getting the right support he’s having outbursts of anger and frustration. He doesn’t tell us how he’s feeling so it comes out in other ways.
It’s completely heartbreaking – as a parent you want an answer. I just want something better to be in place. It’s emotionally, mentally and physically exhausting. As a mum you feel like you’ve got to keep it together. There’s no support for me as a parent. For the past three years nothing’s happened. As a parent, you’re telling these professionals what’s happening and you feel like a liar or like you’re going mad. Tristan doesn’t tend to get migraine attacks at school but that’s because he only goes in when he’s feeling well.
How has migraine impacted your family?
What has your experience of the healthcare system been like? We’ve gone through every medication children can have on the NHS. He has sumatriptan and naproxen because paracetamol does nothing, as well as anti-sickness medication. He’s had so many tests and has just had a second MRI. He’s also got to have a stomach scan and blood tests which will be hard as he has a major needle phobia. Once we get the results we’re going to push for a referral to Great Ormond Street Hospital. We saw his consultant recently and she said she’s thinking about discharging him from her and taking him off his medicines because she’s tried everything and there’s nothing more she can do. He’s currently under a pain team at the hospital and in theory he’s meant to be having physio and psychological support but it’s not come about.
Migraine can affect children of any age. Tristan is 11 and lives with migraine with brainstem aura, which can involve severe symptoms like losing consciousness, unsteadiness when walking and double vision. We caught up with Tristan’s mum Jess about their experience and the impact migraine is having on Tristan’s
Tristan’s condition has just been completely life-changing.
Tristan just shuts off when it comes to talking about his migraine. When we saw the consultant, he just wouldn’t talk about his migraine to her. He got up and walked out. He doesn’t tell his friends about it so he’s quite isolated. His two best friends know but only because I tell them. We’d like school to do an assembly on unseen disabilities and they’ve still not done it. I think he gets so upset because of the lack of understanding and the lack of support to help him cope with it. He just cries when he talks about it. What would you like to see change for children with migraine? I think children with migraine need to be given psychological help much earlier on. Schools and other places of learning also need to be educated about migraine better. It would also be great to have an action plan for us to put in place to help Tristan at school and at home.
The one thing I am really happy about is that I stopped work in January and Carers Leeds asked if I’d tried applying for disability allowance. I thought I wouldn’t be eligible but I applied and have now been awarded it. Tristan’s condition has been recognised as an unseen disability. I’m also waiting to see if we can get a blue badge as he sometimes struggles with walking and dizziness when we’re out. How does migraine affect Tristan’s school life?
I’ve always been one to work and I now can’t commit to work due to the unpredictability of Tristan’s attacks.
In Tristan’s words, he can’t function. He says sometimes people talk to him and he just can’t process it. Being unable to function and in constant pain is very hard. A lot of the time he might do a half day at school. Through his exams and SATS he did a part-time timetable. He’s missing out on school. School starts at 9am, if he’s having a bad day he starts at 12pm. The school says he’s struggling a bit with maths, but we can deal with that another time because he’s just going through enough right now. They won’t give him one-to-one teaching support because they say they don’t have enough staff. Schools just don’t get it. They know how to accommodate children with conditions like ADHD or autism. But with migraine they just don’t seem to get it. It’s so frustrating as a parent. Tristan’s meant to be going on a residential in July and he wants to go. He really wants to just be a normal child. How does Tristan feel about his migraine?
PATIENT VOICE 13
I ever expected it to but I am excited for the future and looking forward to a day when I can no longer say that I live with Chronic Migraine. I grew up being “the girl with the headaches”. It was something that everyone just knew to be true about me. I’d cover my ears when the other children got too loud, I asked to leave rooms if there were bright flashing lights, I avoided chocolate because I knew it was a trigger long before I knew the word itself, I missed lessons, and had days where the pain was too much to even come into school. But I was never diagnosed with migraine.
PATIENT VOICE 14
CHRONICBYMIGRAINEUPGROWINGWITHIVYSAMUEL,WHOLIVESWITHMIGRAINEMylifelookssodifferentfromhow
Back then and to some extent still, there was an anger I felt towards the doctors I believed should have spotted the signs sooner. I had been in and out of the GP surgery with the same issue yet it wasn’t until things got worse that I feel like I was taken seriously.
I was fortunate enough to have attended a very small school when I was a child, so the teachers were able to deal with my situation in the way I believe it should have been handled. If my head hurt I was allowed to lie down in a quiet room, and if my symptoms didn’t clear then they’d call my mum to pick me up, otherwise I went back to class. Nobody ever really questioned my symptoms and I think that was important. They accepted that what I said about how I felt, even at such a young age, was the truth and acted I’maccordingly.prettysure
The days I spent in school were often cut short, as the gaps between each attack grew closer together. To date, my most recent symptom-free day can be found in April of that year. Since then migraine has been a daily struggle. My exams went as well as they could have gone for someone who couldn’t revise or concentrate for long periods of time. But I left school in year 12 when I was 16 years old. It had reached a point where it was difficult to balance managing my illness with my education, so I needed to take a break to focus on my health.
A part of me thinks that all of this was preventable and that’s been the toughest thing I’ve had to come to terms with.
To the best of my knowledge, I’ve done the groundwork to prepare myself for uni. I let them know about my illness, applied for Disabled Students’ Allowance, and so hopefully when I get there things will be smoother from the start. My life looks so different from how I ever expected it to but I am excited for the future and looking forward to a day when I can no longer say that I live with Chronic Migraine.
After spending two years getting to know migraine better and how it affects me in my life I returned to education. And I have now come to the end of my time at an online school and in September I will be starting university. I’ll be studying Creative Advertising, a subject I likely wouldn’t have ever heard of had I not taken time out when I did.
And it was in the appointment with the paediatrician that all my symptoms were finally placed together, to form a diagnosis of migraine. Until then, I don’t think I’d ever been asked questions about light and sound sensitivity so I hadn’t ever really considered it all to be connected. I was prescribed preventative medication, given a lot of information to read up on, and told to keep a migraine diary. And it was by keeping this diary that I was able to notice when my episodic migraine progressed to chronic.
now that it was migraine, but the doctors we saw at the time told me and my family that we had nothing to worry about. And so we didn’t.
At the beginning of year 11, autumn 2017, I started to realise that my head was hurting more often than usual. I went to the GP, as I had done numerous times throughout my childhood, but on this occasion, after a bit of back and forth, they referred me to a paediatrician.
By this point, I had made the transition from paediatrics to Adult services and was trying new treatments under a Itneurologist.wasdifficult watching my friends move on with their lives while it felt like mine had been brought to a standstill. I experienced a lot of dark emotions and had to navigate the grief of losing the life I once had.
PATIENT VOICE 15
The early part of the following year, just after mocks, is when preparation for GCSE exams kicks into the next gear. The stress level rises among students, “revision” is a word you hear multiple times a day, and things that were once just a date in the calendar are starting to feel more real. It was during this time that I was spending an increasing number of days off school. I had blood tests, an MRI scan, tried medication after medication. I battled with side effects and symptoms alongside the guilt of not being able to do as much revision as I would have wanted to. I found myself in a vicious cycle of migraine and anxiety, one feeding into the other. I could feel when the next attack was about to start, my ears would burn and I’d quickly reach for some tablets.
BY: HILARY BROWN, WHO LIVES WITH MIGRAINE
PATIENT VOICE 16
I am 75 and have suffered with migraine since my early teens. It’s been the bane of my life. I have physically banged my head on the wall for the pain before. People don’t realise the impact it has on your life. I have suffered from not just pain, but also vomiting, diarrhoea, I feel icy cold, I often have to sit in a hot bath. I used to get aura and lose my vision. I was a teacher and half the classroom would just disappear. I also lose my speech sometimes. It’s a living hell when you have an attack.
HILARY’S STORY WHY I WANT TO HELP FUTURE GENERATIONS AFFECTED BY MIGRAINE
Over the years, GPs haven’t been very helpful or even known much about migraine. I once got a referral through Migraine Action (now part of The Migraine Trust) – I spoke to someone there and explained that my doctor had always refused to give me a referral to a specialist. She told me to go back to my GP and say I had a right to be referred. It took me three months to work up the courage but I managed to get a referral to the York Migraine Clinic and had a physical exam. It was the first time someone was actually interested, the nurse was marvellous too. More recently, I rang the doctor as I’d been having some really bad days. She didn’t really say much. I came off the phone with a referral for an assessment for autism. It’s a four year waiting list for a full assessment with a specialist. I can’t see the point. A letter then popped up out the blue to go to a neurologist. I’ve seen one before and they said they didn’t know much about migraine. I’ve also mentioned the new anti-CGRP medication, but everything I asked about they just put me off. The letter was only for a telephone consultation and I then got another letter pushing everything back to October. In total, I will have been waiting for 10 months. The Royal Victoria Infirmary in Newcastle has a 52-week waiting list and I’d rather have just been on that. I’ve tried all sorts of preventives, one shot my eye pressure right up. None have worked. Amitriptyline did no good, I don’t want to take things that make me feel worse. I now take rizatriptan when I’m having an attack which helps to get rid of pain very quickly, although it does wipe me out. Still, I would rather be tired and not be in pain. I think migraine is a horrible and underrated medical condition. It’s underrated by employers as well, and made worse by people who say they have a migraine when they have a headache. People at work would ask me if I was alright – I was grey and my eye would be closing – and then I’d have colleagues shouting about having a migraine attack when they didn’t. It’s like the difference between saying you have a cold and the flu. I felt I wanted to leave money to The Migraine Trust in my will in the hope that more can be done for people with migraine, through research, raising more awareness and helping people directly. My life has been ruined by headaches and migraine, and I thought if I left some money it could help other people like me.
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
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. Legacy gifts transform our work. We are very grateful to the many supporters, like Hilary, 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.
PATIENT VOICE 17
Leaving a gift to The Migraine Trust
ResearchROUND-UPRESEARCHiscrucialtoimprovingourunderstanding 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 2022, as well as information on how you can take part in research trials.
RESEARCH 18
Erenumab (Aimovig) is one of the new calcitonin generelated peptide monoclonal antibody treatments (CGRP mAbs) for the prevention of migraine. It is available on the NHS for people who have not had success with at least three other preventive treatments.
A new study recently looked at whether there is any difference between the safety and effectiveness of Erenumab in people under the age of 65 and those over the age of 65. Previous studies have looked at safety and effectiveness in one group or the other without comparing the two.
See the full study: Karsan, N., Nagaraj, K. & Goadsby, P.J.
Can psychological support help adults with migraine?
Comparison of efficacy and safety of erenumab between over and under 65-year-old refractory migraine patients: a pivotal study. Neurol Sci (2022)
It’s clear that migraine can have a big impact on mental health, so how effective are psychological interventions in helping people with migraine? A review of the literature on this topic published earlier this year analysed studies on psychological interventions for migraine and tension headache. The researchers found that psychological treatments had a small to medium beneficial effect on migraine frequency, pain intensity, and disability, compared to controls. However, they didn’t find any significant improvement in quality of life or mood post-treatment. The researchers conclude that psychological treatment may be beneficial to people with migraine and other headache conditions, although they note that more high-quality research is needed to back this up.
Lidocaine may help hard-totreat chronic migraine
Cranial autonomic symptoms: prevalence, phenotype and laterality in migraine and two potentially new symptoms. J Headache Pain 23, 18 (2022)
See the full study: Dudeney, J, Sharpe, L, McDonald, S, Menzies, RE, McGuire, B. Are psychological interventions efficacious for adults with migraine? A systematic review and meta-analysis. Headache. 2022
RESEARCH 19
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 research-opportunitiesmigrainetrust.org/clinical-trial-
The researchers found that after three and six months of treatment with Erenumab, both groups saw improvements in their migraine and there were no statistically significant differences between them. Therefore, the researchers suggest that the treatment is as effective and safe in over 65s as it is in under 65s. It’s important to note that the research used a small number of participants so more research is needed to back up these findings.
Two potentially new migraine symptoms Migraine can come with a wide variety of symptoms, and a study published back in January looked at the presence of cranial autonomic symptoms – think runny nose, blocked ears, and watery eyes – in people with migraine. The researchers suggest that cranial autonomic symptoms are common in migraine and tend to occur on the same side as the head pain in people with chronic one-sided migraine.
Erenumab as a treatment for over 65s
See the full study: Cetta, I., Messina, R., Zanandrea, L. et al.
You may have seen news reports about a new study that focused on a local anaesthetic called lidocaine as a possible treatment for chronic migraine that isn’t responding to other treatments. Over 600 people were given infusions of lidocaine, with most experiencing short-term pain relief. A month later, some patients noted that their total monthly headache days had decreased. The researchers suggest that lidocaine might help to break the cycle of pain experienced by those with chronic migraine. However, this was a small-scale observational study so it can’t determine cause and effect. We need more research to confirm whether lidocaine may be beneficial to people with hard-totreat chronic migraine.
See the full study: Schwenk ES, Walter A, Torjman MC, et al. Lidocaine infusions for refractory chronic migraine: a retrospective analysis. Regional Anesthesia & Pain Medicine 2022;47:408-413
The researchers note that ‘identification and understanding of these symptoms in migraine is important to ensure timely diagnosis and effective management’.
The most common cranial autonomic symptoms reported in the study were watering eyes, facial swelling and a runny nose. Stuffy ears were also reported by some participants, as were throat swelling and voice change. These symptoms seemed to be associated with one another, and the researchers propose that throat swelling and voice change may also be cranial autonomic symptoms in migraine and may also be connected to aural fullness (blocked ears).
For support or information about migraine, you can contact our friendly advisors free of charge. Call us on 0808 802 0066 Send us a message at migrainetrust.org/contact-us Talk to us on LiveChat at migrainetrust.org themigrainetrust @migrainetrust Instagram @migrainetrust Linkedin /company/migraine-trust The we’reaspectconcernsIfTrustMigraineHelplineyouhavequestionsorrelatingtoanyofyourmigraine,hereforyou.
