cm january 2016

a www.migraine.org.uk

JANUARY 2016

ChallengingMigraineCOVER STORY Migraine and Hughes Syndrome

INSIDE THIS ISSUE Are you D deficient? Botox Treatment – what is it really like? Daith to Migraine

THE MAGAZINE FROM MIGRAINE ACTION

Please address all correspondence to the office. The views and opinions expressed by contributors are not necessarily those of MA or the Editor. The right is reserved to edit items submitted. This publication provides information only. Unless otherwise stated, the authors have no medical qualifications whatsoever. Migraine Action and its officers can accept no responsibility for any loss, howsoever caused, to any person acting or refraining from action as a result of any material in the publication or any information given. Medical advice should be obtained on any specific matter.Copyright © 2016 Migraine Action

Migraine Action, 4th Floor, 27 East Street, Leicester LE1 6NB Email: [email protected] Web: www.migraine.org.uk

Helpline: 08456 011 033Calls cost 5p per minute plus your phone company’s access charge

Contents1 Welcome2 Migraine and Hughes Syndrome 6 Fundraising9 Research14 Botox Treatment – what is it really like?16 Children and Young People18 Migraine and Me20 Clinic Care in Coventry23 Member Feedback26 News and Views28 Daith to Migraine!

Please contact the office for details of headache and migraine clinics.Registered Charity number: England and Wales 1152973; Scotland SCO45820

Cover story p2 Migraine and Hughes Syndrome

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WelcomeFirstly, welcome to our “new look” Challenging Migraine magazine. We hope you like the new design, which incorporates many of the suggestions you have made. As always, we would welcome any comments you may have.

A huge congratulations to Gareth Fuller for securing Migraine Action’s Virgin London Marathon 2016 spot, and who will be raising funds for all affected by migraine in the run up to April. Gareth’s wife Nicola Fuller has chronic migraine and has been a member of Migraine Action for many years. You can read more on page 6.Be sure to read our cover article on Hughes Syndrome on page 2. Also known as sticky blood, one of the key symptoms of Hughes syndrome is migraine, and a condition that many, including doctors, are unaware of. We did some fantastic work in 2015 with children and young people. This included receiving some astonishing entries to our “Get Creative” competition for young people with migraine. Check out page 16 to see the winning entries. I would like to say a huge thank you to the hundreds of people who responded to our Christmas Appeal.

You have helped us raise thousands of pounds towards our work in 2016, including developing pilot projects with a number of local authorities to improve services for children and young people with migraine. These are exciting times for Migraine Action. Further to the help you have provided us in responding to our “Listening Exercise” in 2015, we have been speaking to academics, clinicians and other health charities, expanding our work and influence to make an even bigger difference to the lives of those with migraine.Challenging Migraine is the magazine for you, so contact us with any thoughts on areas you feel we should cover in future editions. Until there’s a cure, we are here to help you take control in 2016 and beyond.

Simon Evans, Chief Executive

2 www.migraine.org.uk

As knowledge of Hughes syndrome, a blood disorder that is also known as sticky blood and antiphospholipid syndrome (APS), can be inconsistent among medical professionals, it’s vital we learn how to educate ourselves about this condition, which has strong links with migraine.

Migraine and Hughes Syndrome

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What is Hughes syndrome?Hughes syndrome is an autoimmune disease in which there is an increased tendency for the blood to clot too quickly, both in the veins and arteries. This is caused by the production of abnormal antibodies called antiphospholipid antibodies. They work by targeting fat molecules in the blood, making it more likely to clot. Antibodies are normally made by the immune system to identify and destroy bacteria and viruses. However, when antiphospholipid antibodies are present in the body, they can negatively affect any organ. The disorder can cause low-grade symptoms and potentially fatal conditions as a result of the blood clotting.“Awareness of Hughes syndrome remains minimal for a number of reasons”, says Professor Graham Hughes, a consultant rheumatologist at London Bridge Hospital. In 1983, Professor Hughes was the first to describe the disorder. “Discovered just over 30 years ago, the condition is still relatively new in the medical domain and thus far there has only been limited research conducted. In addition to this, many medical students are still not being taught about the condition, meaning that new and existing doctors may remain ignorant of the symptoms.”

Recurrent headachesThe sticky nature of the blood can also impair circulation and impact on the amount of oxygen that is transported around the body, including the brain. This can lead to symptoms including migraine, memory loss, dizziness, visual disturbances, loss of balance, blotchy skin (a condition known as livedo reticularis), joint pain and fatigue. One of the most common features of Hughes syndrome is recurrent headaches, linked to the lack of oxygen it causes in the brain. These are often migrainous and are sometimes accompanied by flashing lights, zigzag patterns, nausea and vomiting. Those diagnosed with the condition also describe symptoms of photophobia (extreme sensitivity to light), fragmented vision, impaired memory, inability to process actions and a failure to recognise familiar faces (such as work colleagues) during a migrainous attack.With Hughes syndrome, patients often describe migraines starting in childhood or their teenage years and then disappearing. Migraines then suddenly return during their 30s and 40s.

The sticky nature of the blood can also impair circulation and impact on the amount of

oxygen that is transported around the body, including the brain.


Severe consequencesAPS can also have very severe consequences. It is the cause of one in five strokes, heart attacks and cases of deep vein thrombosis (DVT) in people under the age of 50. The condition affects all age groups from infancy to old age. However, the majority of patients are between 20 and 50. Hughes syndrome is more common in women and it is recognised as the most treatable form of recurrent miscarriage. It is also known to increase the risk of stillbirth by three to five times. Yet these serious complications can be prevented from developing through early diagnosis and appropriate treatment. “Some doctors just think of it in relation to miscarriage and DVT,” says Professor Hughes. “But the most common symptoms are migraine and memory loss. Migraine is one of the hallmarks of Hughes syndrome. However, one of the problems for researchers looking into links between Hughes syndrome and migraine is classification. Research doctors like to classify conditions, but migraine, unfortunately, comes in many forms and documentation often fails to slot the complaint into any clear grouping.”Other recognised features of Hughes syndrome include angina, chest pains (if the blood flow to the heart is affected), stomach pain, sleep disturbances and unexpected bone fractures in the feet (due to the impaired blood supply). The condition is sometimes mistaken for dementia (if memory loss is one of the main symptoms). It can also be misdiagnosed as multiple sclerosis (MS) as both conditions can lead to pins and needles.

Diagnosis and treatmentProfessor Hughes urges anyone who suspects they have Hughes syndrome to press their GP for a test. The condition is diagnosed by a combination of clinical symptoms and three simple blood tests. These can be carried out at your GP practice or your doctor may prefer to refer you to a specialist. The tests measure the level of abnormal antibodies. The Hughes Syndrome Foundation stresses it is important that all three tests are ordered. With the anticardiolipin (aCL) test, approximately 80% are positive in patients so it is necessary to perform the other two tests. There are indications that a significant number of migraine sufferers have antiphospholipid antibodies. Once diagnosed with Hughes syndrome, patients find recurrent headaches and migraines respond well to treatment with aspirin. However, if untreated, migraines can increase in both frequency and severity. They can sometimes result in hemiplegic migraines, where sufferers experience a temporary weakness on one side of their body as part of the attack. The symptoms can be frightening as they mimic those of a stroke or transient ischaemic attack (TIA), also known as a mini-stroke. Low dose aspirin (75mg-150mg daily) is usually the first choice of treatment for patients that have not had thrombosis or stroke. This treatment option can help to alleviate the frequency of headaches and dizziness. For patients that are unable to tolerate aspirin, clopidogrel is an alternative that provides similar anti-platelet (blood clot formation prevention) effects.

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Warfarin is taken by most APS patients that have had a thrombosis or stroke. It has also proved effective for patients with severe migraine and memory loss. Professor Hughes says the blood-thinning medication available to treat symptoms of Hughes syndrome can be “life-changing”.“A test for Hughes syndrome costs only a few pounds,” says Professor Hughes. “However, patients are usually denied

For more information on Hughes syndrome, visit

www.hughes-syndrome.org

One of the most common features of Hughes syndrome is recurrent headaches, linked to the lack of oxygen it causes in the brain.

this simple means of diagnosis until they have suffered serious consequences such as stroke or heart attack. Education surrounding early indications of the condition is vital in order to increase test rates and begin treatment before more serious symptoms transpire. Treatment of Hughes syndrome can be as simple as taking a daily aspirin, and be effective almost immediately.”


The biggest fundraising event in the worldRunning 26 miles in the shortest possible time and taking part in the world’s largest fundraising event is no mean feat! On the 24th April this year, Gareth Fuller will be donning his running vest, tying his laces and joining the other 35,000 plus runners at the Virgin London Marathon. Three time Great North Run participant, Gareth, will be running on behalf of Migraine Action in one of the hardest endurance fundraising challenges.

FundraisingWe spoke to Gareth about why he wanted to support Migraine Action and how he felt about taking on the 26 mile challenge. “I’m running on behalf of my wife Nicola who has been a member of Migraine Action for many years. She first had an attack as a 9-year-old and was initially off school repeatedly for short periods to recover, spending time with doctors diagnosing the problem and finding the right medication. The attacks continued throughout teenage years and eventually led to her having to give up long-distance running which was identified as one of the many triggers for the attacks.

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Show your support for Gareth and help him reach his fundraising target of £2,000!Send a cheque made out to Migraine Action to: Migraine Action, 4th Floor, 27 East Street, Leicester LE1 6NB and mark the back of the cheque with “Donation to Gareth’s London Marathon”. Or you can make a donation over the phone, by calling us weekdays between 10am and 4pm on 08456 011 033.

“Even now, certain food and atmospheric triggers can set off an attack, but it is much better than previously – simply by managing and avoiding situations that might cause a problem. At the first sign of an attack, Nicola finds it best to lie down in a dark room, but looking after a 5 and 1-year-old, it’s not always possible.“Sadly most people are not supportive of migraine. In modern life and on TV, it’s often used as an excuse or even occasionally as a joke. Anyone who has lived or been with someone experiencing migraine attacks appreciates the problem more; but it’s still not the same

compared to the person who is actually having the attacks.“I am both nervous and excited at the same time for the big day. I’ve run the Great North Run three times and decided to try the longer distance. When the chance came up to apply for the place, I thought it was a great opportunity. It definitely won’t be easy on the day itself or with the training throughout the winter, but I’m determined to finish! I’m really looking forward to running on behalf of Migraine Action and would like to say thanks for the support so far and in the upcoming months (especially the training plans!)”

“Sadly most people are not supportive of migraine.

In modern life and on TV, it’s often used as an excuse or

even occasionally as a joke.”


2015 Big Fun Runs make a big impact for migraine Throughout 2015, fantastic fundraisers for Migraine Action were running at Big Fun Run events all over the UK. One Runner at the Edinburgh Big Fun Run back in October 2015 was Lisa; “I had started running in May 2015 in an effort to keep myself fit and wanted to make sure that I had something that would make me keep going. A friend told me that there was a Fun Run in Edinburgh in October. I was instantly drawn to running for Migraine Action, having suffered a few some years ago. My good friend Mandy has unfortunately suffered from migraines since I’ve known her. “When I mentioned that I was considering running for Migraine Action, Mandy told me that she’d spoken to them several times for guidance, support and information relating to her migraines and found them so approachable and helpful. I applied on the spot! It’s something I wanted to highlight, as I would never want Mandy thinking she was on her own.”

Mandy told us, “I have suffered from migraines since the age of 12, and went through many different courses of medication with no success. I am now receiving Optical Nerve Block Injections in the hope for some pain relief. “I was delighted when Lisa suggested Migraine Action as a sponsor for the Big Fun Run. This has raised great awareness throughout our office and I have also had a great deal of support personally from the charity. I am hopeful that maybe one day a miracle does happen and we find a cure for this debilitating disease!”Thanks to Lisa’s amazing fundraising efforts (with the help of Mandy), Lisa easily beat her £300 target and raised £417!

If you would like to fundraise to help all those affected and fight migraine

misconceptions, contact us [email protected]

Until there’s a cure, please support us in helping you

and all those affected take control.

“I was delighted when Lisa suggested Migraine Action as a sponsor for the Big Fun Run. This has raised great awareness throughout our office and I have also had a great deal of support personally from the charity.”

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Depletion of Sanomigran Due to the closure of the manufacturing sites where Sanomigran® (pizotifen hydrogen malate) was produced for the UK, supplies of the preventative medication have slowly depleted over the last year. The product range of the 0.5 mg tablet and the Elixir depleted very rapidly after the announcement, and the remaining supplies of the 1.5 mg tablet are now (or very close to) also being fully exhausted. For some affected by migraine, the use of Sanomigran helped to stop the effects of certain naturally occurring substances in the body called “serotonin”, “histamine” and “tryptamine”. The discontinuation of Sanomigran is not related to any safety issue and has arisen unfortunately due to the failure of finding an alternative manufacturing site in the Novartis network (that was capable of producing within the registered specifications that are necessary to meet regulatory standards).The manufacturer Novartis recommends switching to alternative treatment options. This includes generics of pizotifen hydrogen malate tablets and other classes of medicines for the same indications, based upon your underlying medical history.

Withdrawal symptoms such as depression, tremor, nausea, anxiety, malaise, dizziness, sleep disorder and weight decrease have been reported following abrupt cessation of pizotifen. Therefore, gradual withdrawal is recommended. If you previously received prescriptions for Sanomigran, please make an appointment to speak to your doctor as soon as you can to discuss alternative treatments based on your own medical circumstances.

Research

Withdrawal symptoms such as depression, tremor, nausea,

anxiety, malaise, dizziness, sleep disorder and weight decrease have been reported following abrupt cessation of pizotifen.


Pre-existing asthma may be a strong predictor of future chronic migraine attacks in individuals experiencing occasional migraine headaches, according to researchers from the University of Cincinnati (UC), Montefiore Headache Center and Albert Einstein College of Medicine, and Vedanta Research. “If you have asthma along with episodic or occasional migraine, then your headaches are more likely to evolve into a more disabling form known as chronic migraine,” said Dr Vincent Martin, co-director of the Headache and Facial Pain Program at the UC Neuroscience Institute, and lead author of the study. Dr martin teamed with Dr Richard Lipton and Dawn Buse, Ph.D., both of Montefiore Headache Center and Albert Einstein College of Medicine; and others to study about 4,500 individuals who experienced episodic migraine or fewer than 15 headaches per month in 2008. “Migraine and asthma are disorders that involve inflammation and activation of smooth muscle either in blood vessels of in the airways,” said Richard Lipton, M.D., director of Montefiore Headache Center and vice chair of neurology, and the Edwin S. Lowe Chair in Neurology, Albert Einstein College of Medicine, and founder of the American Migraine Prevalence and Prevention Study. “Therefore, asthma-related inflammation may lead to migraine progression.”

Study participants completed written questionnaires both in 2008 and 2009. Based on responses to the 2008 questionnaire, they were divided into two groups – one with episodic migraine and coexisting asthma and another with episodic migraine and no asthma. They were also asked about medication usage, depression and smoking status. The 2008 and 2009 questionnaires included questions about their frequency of headache, which enabled the authors to identify the participants who had progressed to chronic migraine. The AMPP Study was funded through research grants to the National Headache Foundation from McNeil-Janssen Scientific Affairs LLC, Raritan, N.J. The AMPP study database was donated by McNeil-Janssen Scientific Affairs LLC to the National Headache Foundation for use in various projects.First published Montefiore Inspired Medicine, November 30, 2015

Asthma and what it could mean for your future migraine

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Are you D Deficient? A recent study focused on vitamin D deficiency and migraine, split sixty five migraine patients into two groups. One group took a vitamin D supplement whilst the other was provided an inactive placebo, both for 10 weeks. When the results were analysed, the researchers found that the patients who had been taking vitamin D had, on average, fewer migraine attacks than those taking the placebo. Vitamin D is unusual in that the main source is not food, but the action of sunlight on the skin. It comes as no surprise then that in the UK we’re at risk of deficiency – from mid-October through until early April the sun isn’t strong enough here to form vitamin D. It’s estimated that around 20% of adults in the UK are short of vitamin D. In this study, though, over 80% of the patients were found to have inadequate levels. This raises the possibility that migraine sufferers may be at increased risk of deficiency – perhaps due to avoiding bright sunlight because it triggers their attacks or photophobia during attacks.

Vitamin D has several important functions. For example, it helps to regulate the amount of calcium and phosphate in the body. The vitamin is made by our body under the skin, in reaction to summer sunlight.Vitamin D is found in a few foods, but a supplement is probably the best bet if you need to top up your levels.Good food sources are:• oily fish – such as salmon,

sardines and mackerel• eggs• fortified fat spreads• fortified breakfast cereals• some powdered milksMost people should be able to get all the vitamin D they need by eating a healthy balanced diet and by getting some summer sun.Particular groups of the population at risk of not getting enough vitamin D are:• all pregnant and breastfeeding women• babies and young children under the

age of five • older people aged 65 years and over• people who are not exposed to much

sun – such as people who cover up their skin when outdoors, or those who are housebound or confined indoors for long periods

• people who have darker skin, such as those of African, African-Caribbean and South Asian origin.

Thank you to Natalia Kerkham from the Westminster University for her help in this article.

When the results were analysed, the researchers found that the patients who had been taking vitamin D had, on average, fewer migraine attacks than those taking the placebo.


NICE guidelines update In November 2015, new NICE guidelines were published, detailing some changes that have occurred in headache diagnosis and management, including tension-type headache, migraine and cluster headache. NICE’s role is to improve outcomes for people using the NHS and other public health and social care services. The guidance can be used by the NHS, local authorities, employers, voluntary groups and anyone else involved in delivering care or promoting wellbeing.Changes and updates to migraine specifically were as follows:• If both topiramate and propranolol

are unsuitable or ineffective, consider a course of up to 10 sessions of acupuncture over 5-8 weeks according to the person’s preference, comorbidities and risk of adverse events.

• Do not offer gabapentin for the prophylactic treatment of migraine. NICE guidelines have determined that Gabapentin and gabapentin enacarbil are no better than placebo for prophylactic treatment of migraine in adults and are commonly associated with adverse events.

If you would like to discuss these NICE guidelines updates,

or find out more about acupuncture or other treatments, please contact Migraine Action

by [email protected] or call us weekdays between

10am and 4pm on 08456 011 033

Update to July 2015 Challenging Migraine Sumatriptan article In the July 2015 edition of Challenging Migraine, we told you about a study conducted by Dr Jakob Møller Hansen, on whether Sumatriptan’s outcome is different on migraine with aura compared with migraine without aura. We would like to apologise for a mistake in the article recently identified by one of our members, who we are very grateful for drawing our attention to.

The original article stated, in paragraph three, that “The number of tablets needed to treat for 2 hours pain freedom was an average of 4.4 tablets for attacks without aura and 6.2 for attacks with aura.” This statement should read as “The number of patients needed to treat for 2 hours pain freedom was an average of 4.4 for attacks without aura and 6.2 for attacks with aura.”We apologise for any inconvenience or confusion the original article may have caused.

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Volunteers are needed for the trial who have migraines for more than four days a month, but for less than 15 days a month. It is open to men and women who are over 18, but under 65 years of age, who don’t take more than two types of tablets daily. Patients can be recruited to take part in this study from all over Staffordshire, South Cheshire, and the West Midlands.Patients who take part in the trial will be given a monthly injection and will have the additional specialist support of the Headache Research Team. The trial is three monthly injections, after which all people on the trial will be offered the chance to try the drug for a further nine months, even if they had a placebo.

“This is the first time we will have a dedicated drug to specifically treat migraine. There is currently no cure for migraine, yet it is such a debilitating condition where people’s daily lives are affected.”

University Hospitals of North Midlands Strives for a new migraine treatment

For more information about the trial and how to take part please email the Headache

Research Team at UHNM

headache_research @uhns.nhs.uk

or call on01782 675393

Leading a search for the first successful preventative drug made to specifically treat migraines is The University Hospitals of North Midlands NHS Trust (UHNM), as it starts recruitment for patients to the STRIVE research project.The Trust is just one of seven sites chosen in the UK to take part in the Strive Study and the only one in the West Midlands. It is now looking for volunteers to take part to see how effective a new drug is in reducing debilitating migraine.Dr Brendan Davies, Consultant Neurologist at UHNM and Clinical Lead of the Midlands Regional Headache Clinic and Headache research team, is leading the trial. He said: “This is the first time we will have a dedicated drug to specifically treat migraine. There is currently no cure for migraine, yet it is such a debilitating condition where people’s daily lives are affected. This trial is also looking at giving migraine sufferers another option for their treatment so instead of taking tablets every day they could just have a single injection once a month.”


Botox Treatment – what is it really like?After a NICE recommendation in 2012, Botox became available to chronic migraine sufferers (who meet the specific criteria) in England and Wales. But what is Botox treatment and what does it feel like? We spoke to Tania Sanford-Casey about her experiences with Botox and what it really feels like.“Botox is the more common name for Botulinum Toxin Type A. It is a toxin that, in chronic migraine sufferers, is used to kill the nerve cells to reduce pain. Approximately 31 injections of Botox are given around the head, neck and shoulders. Their exact placement will depend on where you experience your migraine pain.Before I had my first course of Botox I was nervous, I didn’t know what to expect. How much would it hurt? Would it improve my migraine? So I thought I would share my experiences and tips, for those who are considering this treatment.Everyone experiences pain differently, but for me, the short, sharp scratches of the injections were nowhere near the pain I experience during an intense migraine period (I’ve had a constant migraine since I was 11, so can’t really say ‘during an attack’). I found the ones in my forehead hurt more than any other area. I have noticed that, with each course of Botox I have had, the pain of the injections has been lessened.After my first course of Botox, I nearly fainted. I didn’t realise, but I was so nervous that I temporarily stopped breathing! My neurologist knows me well and noticed I wasn’t right. I tried to argue and say I was ok, but he knows me better than that, so made me lie down. At my

next appointment, he kept me talking throughout the treatment. I’m not sure if this was deliberate on his part, but it kept me breathing! If you’re nervous about having the injections, I would definitely suggest this to keep your mind off the procedure. I would check with the person administering the injections first, as you definitely don’t want to stop them concentrating!I was shocked by the improvement the Botox had on my migraine pain. Before my first course, my daily pain score was between 7 and 9. After my first course, this reduced to 5 to 7. My second course brought my pain down to 3 to 5 and the course after that left me with a daily pain score of 2 to 4!Think Botox might be for you? The National Institute for Health and Care Excellence (NICE) has a requirement criterion which you need to meet to be eligible. It states that you have to be a chronic migraine sufferer, which it defines as at least 15 days of headache per month,

15

with a minimum of 8 of these being part of a migraine attack. You have to have tried at least three different types of preventative medication for your migraine without success and not be taking too many painkillers (though there isn’t a definition as to what is considered too many). Botox can be trialled for two courses, three months apart. It can be continued after this if your pain score is reduced by more than 30%, but you are still classed as suffering with chronic migraine.”

Do you currently receive Botox treatment? Contact us today to share your experiences of the treatment, both good and bad, to help others in taking control of migraine.

Helpline: 08456 011 033

What is Botox treatment for chronic migraine, and how often would I have it? Botulinum toxin type A (Botox, Allergan) is a purified neurotoxin complex, which is derived from the bacterium Clostridium botulinum. It has neuromuscular transmitter blocking effects. The recommended reconstituted dose is 155–195 units, administered intramuscularly as 0.1 ml (5 units) injections to between 31 and 39 sites around the head and back of the neck. The recommended re-treatment schedule is every 12 weeks.What are the success statistics of Botox treatment? A 2010 clinical programme consisting of two phase III studies, both of which were randomised, double-blind and placebo controlled, enrolled over 1,300 patients diagnosed with chronic migraine. Of the Botox treatment group, the average days per month with migraine was 19.1, and an average of 18.9 migraine days within the placebo group. Following treatment, Botox patients had an average of 8.2 fewer migraine days at week 24, which was significantly greater than the change from baseline observed in the placebo treated patients (6.2 days). After week 56, nearly 70% of Botox treated patients experienced ≥50% reduction in migraine days.What side effects could I experience with Botox treatment?Botox side effects have been known to include; headache, migraine, facial paresis (partial loss of movement), eyelid ptosis (eyelid drooping), pruritus (itching), rash, neck pain, myalgia (pain in a muscle or a group of muscles), musculoskeletal pain, musculoskeletal stiffness, muscle spasms, muscle tightness, muscular weakness, and injection site pain. As with all migraine treatments, it depends on the individual and it’s always worth discussing potential side effects and your own medical history with your GP prior to treatment.


Winner of the 16 to 24 category, Georgina, told us more about her entry; “My drawing is a self-portrait of when I have my worst migraine. I often describe the pain as having a metal burning rod going straight through my head and it comes like a lightning spark! The eyes represent the way I’m unable to see. I can no longer open my eyes and I have to be in complete darkness and also I feel like they are sunken in from pain.”

Get Creative – the winners!Many find their experience of migraine difficult to communicate and struggle to describe the pain that they feel.Portraying this misunderstood condition through artwork can be very therapeutic, and can also be a useful way to demonstrate the impact of migraine to those who do not suffer first-hand. We have a wealth of art-work dating back to 1970’s from men, women and children of all backgrounds, that help to document the lived experience of migraine sufferers.To keep this work alive, we have been working closely with Fran Kelly, who is a talented artist and prop-maker, as well as a dedicated member of Migraine Action. During the last few months, children and young people were invited to draw their migraine for a chance to win a £25 Amazon Voucher. We would like to thank everyone who took the time to get creative. The originality of each submission was fantastic and we are so grateful to all those who entered. Our chief executive, Simon Evans, had the hard task of deciding the winning entry.We would like to say a huge congratulations to Georgina from the 16 to 24 category, and to Joseph from the 15 and under category!

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I Hate Migraines

Migraines are badIt is such a lot of painCan’t bear it any longerI hate migraines

My ears hear buzzingSo I take MigraleveIt sounds like T.V.I hate migraines

My head throbs with painWhich means tablets for meIt’s like I banged my headI hate migraines

My legs feel like jellySo I take a sprayBut it tastes disgustingI hate migraines

My eyes see blobsEverywhere I turnThat means painkillers again for meI hate migraines

My stomach achesLike my tummy is fullI feel like vomitingI hate migraines

I feel upsetBecause I can’t run aroundI hate migrainesI hate migrainesI hate migraines

When will they stop?

Winner Joseph, aged 10, sent us a poem to help explain his migraine artwork entry.

The Get Creative competition may be over, but keep an eye out for exciting new competitions in 2016. Plus share your artwork, poems and experiences with us throughout 2016 and beyond, and help show non-sufferers the reality of living with migraine.


“I have suffered with migraine headaches since the age 10 (I am now 42). Migraines are generally perceived as a female problem. Not that I have ever thought of them that way, but maybe that’s because I’ve always suffered with them. 70% of men will not see their doctor about their migraines – not that a man not seeing a doctor is a big surprise! I for one did not go for a long time, until my migraines became so debilitating that I had to seek help. Finally after years of being given off the shelf painkillers, my GP has prescribed Imigran for me to try. So far my most effective form of pain relieve is a hot water bottle and an ice pack!Two thirds of migraine suffers are reported to be women, as men seem to have a reluctance to talk to their doctors about

Migraine and Me

“just a headache” or believe there is nothing a doctor can do to help. Migraine is more than just a headache as anybody, male or female, who truly suffers with them, will testify and if like me a particularly bad migraine can put me to bed for up to 3 days!My migraine attacks start at least 75% of the time on the left hand side. Firstly, they start with terrible pain in my neck and shoulder before I get pain on the left side of my head, left side of my forehead and pain in the left of my body (the other 25% of the time the pain is swapped to my right hand side). Depending on the severity I will also have nausea, sensitivity to light and noise and stomach pain with excessive trips to the toilet. I also suffer slurred speech and jumble sentences which can

One third of migraine sufferers in the UK are men. Yet, an unsolicited

stigma remains that migraine is a “woman’s issue”. Perhaps the main

reason for this myth is due to simple statistics. For all conditions men are 24%

less likely than women to visit a doctor! David Savage tells us how he used to be

one of these men, especially when it came to his migraine – but not anymore.

19Helpline: 08456 011 033

be quite embarrassing. It sounds like I’m drunk and I don’t even drink alcohol! Once my migraine has cleared I feel exhausted and have an excessive appetite. The most effective way I have found of managing my migraine when it does fully hit, is going into a darkened room with an ice pack for my head and a hot water bottle for my neck and shoulder. Recently I have found that the Deep Heat Muscle Rescue Neck & Shoulder cream also works very well, as the applicator sponge rubs the cream in very easily and the cream creates a lot of heat reducing the pain (I have tried other gels, creams and spray with no effect).A majority of people think that migraine is just a headache and that I should be able to carry on as normal. I think there needs to be better education as to exactly what a migraine is, how it works and the effects it has on the sufferer. I know lots of people that say they have migraine, when in actual fact they just have a headache. They think that if that can cope that easily, why can’t I? If they were to experience actual vein throbbing, head pounding headache with nausea and the effects I get, they would soon realise that migraine is not a straightforward pain! It can not be managed as easily as popping a couple of painkillers and back to being fine in 20 minutes. I wish that were the case. Then I wouldn’t lose so much time. I work for myself so if I’m in bed with a migraine it is constantly costing me money as well. Although family members and friends can be sympathetic, there are very few I would call on for help and support once an attack hits. For the most part I go to bed, close the blackout curtains and wait for it to pass.

Now for anybody to think that migraine is “just a headache” and not worth a trip to the doctor then sadly you are mistaken. Listening to armchair doctors telling you it is because you ate this or drank that won’t solve the problem. Pain is your body’s way of telling you something is wrong so chronic pain like this shouldn’t be ignored. So make an appointment with your GP and phone Migraine Action’s helpline. There is more help than you think (for which I am just finding out after 30 years). I have also downloaded the free app, Migraine Buddy, to help chart my attacks. Hopefully I can find my triggers so that I can avoid, prevent or at least manage my migraine’s better.So as a call to all you stubborn men out there (like I was), if you are or think you are suffering from migraines make an appointment with your GP and get it checked! They can help you manage the pain better or maybe find out the cause to stop the pain. Migraine is not just a female problem and ignoring the pain won’t make it go away!”

If you would like to discuss migraine in men, email Migraine Action at

[email protected] or call us weekdays between

10am and 4pm on 08456 011 033

“Migraine is more than just a headache as anybody, male or female, who truly suffers with them, will testify and if like me a particularly bad migraine can put me to bed for up to 3 days!”


Clinic Care in CoventryWe speak to Dr Antony Thomas, Consultant Neurologist about a normal day in the Neurology Clinic at the University Hospital of Coventry & Warwickshire.

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When did the clinic open?April 2010How did you get interested in headache?My under-graduation (MBBS) is from Kottayam Medical College, Kerala, India 1989, I have two post graduate degrees from India MD (1993) and DNB (1994) both in General Medicine. I completed my MRCP UK in 2000. I had tremendous support from Dr Manjit Matharu who trained me. I became interested in headaches since I suffer migraines myself. My sister also endured debilitating migraines which I successfully cured after she has been suffering for many years. When does the clinic run?The pain clinic runs on Thursdays at University Hospital Coventry & Warwickshire from 1.30pm to 5.30pm.Is it GP referral only?It’s mainly secondary and tertiary referrals, and selected GP referrals. Since I have the support of the Clinical Nurse Specialist for the Headache Services, I am able to extend the services to Primary Care physicians.What other medics/practitioners work with you at the clinic and what services do they provide?I am the only clinician in the headache clinic along with a Clinical Nurse Specialist.How far afield do people come to visit the clinic?I have patients come to me from the Midlands, Northamptonshire, Leicestershire, Cheshire, Worcestershire, Gloucestershire and Oxfordshire.

How long do people generally wait for an appointment after being referred?The routine wait is currently between 2 to 3 months.Do you see children or just adults?I see children above the age of 14.How many patients do you see in an average week?I see four new and six follow ups in the headache clinic. Some of them can be Neuro-ophthalmology patients particularly IIH patients. What is a typical day at the clinic?The majority of the patients are complex with a long history having seen quite a few clinicians and specialists. The clinics can run long due to the complexity of the cases, but to ensure everything is covered. What is a ‘typical’ patient for you?Generally I see patients with chronic daily headaches and ones with migraine from medication overuse and inadequate treatment. I rarely, but do see other primary headaches like cluster headache, hemicrania continua, trigeminal neuralgia, exertion induced headaches etc.Do you offer unusual/topical treatments?I do give Botox injections for chronic migraine and greater occipital injection for different chronic refractory headaches. What would a patient expect on their first appointment?The patient can expect to give a full history and for me to listen fully about the journey so far with various treatment modalities the side effects and how it impacted on their social and personal life. We would discuss the patient’s history including duration, types, treatment options, treatment doses,


If you would like more information on clinics in your area,

email Migraine Action [email protected] or call us weekdays between

10am and 4pm on 08456 011 033

treatment duration, lifestyles, emotional state and mood, analgesic/triptan overuse. We hope to help the patient through the consultation to learn for themselves how to handle lifestyle impacts on their attacks, appropriate time of starting acute rescue treatments and duration and dose of prophylaxis treatment. The patient is provided with a headache diary, leaflet on triggers, medication overuse headaches and questionnaires like MIDAS, HIT and HAD.Do most patients need a follow up appointment?The majority patients need a follow up appointment due the complexity of cases, mostly within 4 to 6 months.What do you enjoy most about working at the clinic?I enjoy seeing the patients’ happiness after their consultation, in which they are properly listened to. I also enjoy looking through various lifestyle habits which provoked the different headaches, and the patient coming back to follow up with a happy face. It is always very rewarding to see the patients getting their disabling headaches under control, getting to normal routine and enjoying life again.

What is the most challenging aspect of working at the clinic?Both the patient and I have to persevere with treatment options for weeks and months to get the ultimate result. It can be frustrating to the patient especially when the treatment has given them side effects. Some patients can take many months before they can get some form of symptom control, particularly those with medication overuse headaches.What would you hope to see/achieve in the next few years?I want to help more patients. I want to ensure we can get help from a GP with Special Interest and a Clinical Nurse Service so that I can offer a first class service promptly and without delay. If you could give those affected by migraine one key piece of advice, what would it be?To learn what precipitated the migraine and to avoid the triggers. Also it is important to learn what is an optimum and appropriate treatment both for acute and prevention treatment. Until there is a cure, life style modifications possibly has the best chance of long term control and prevention apart from medical management which can be challenging due to various side effects.I enjoy the Headache Clinic and I want to expand it to have another extra clinic or at least on alternate weeks. I would like to help more headache patients to get rid of this disabling ailment.Dr Antony Thomas also works at private clinics at 3 hospitals; Spire parkway Solihull, the BMI Meriden Hospital Coventry, and the BMI Droitwich Spa Hospital.

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From Christine WilsonI just have to tell you about the life-changing effect that Magnesium pills have had on me these past 7 months. I first read about their migraine-reducing qualities in Challenging Migraine a few years ago, and I bought a packet at the time which lasted a month. There was no improvement in the frequency of attacks, so I saw no point in buying any more. However, when I read about Magnesium again in your magazine earlier this year, I decided to give them another try – this time for longer.I started having all the symptoms of classic migraine as a child, and was diagnosed in hospital at the tender age of seven – this came as no surprise to my family, as my Mum and several generations of women in the family above her had suffered migraines for most of their lives. I was put on daily preventative pills then, and have been on one type or another for the 48 years since my diagnosis – excluding my two pregnancies (which were horrendous with attacks nearly every day, and of course the doctor banned me from taking anything to relieve it, even over-the-counter remedies). Over the years, my GPs have advised me every so often to

Member Feedback

If you would like further information on

migraine in over 65 please contact Migraine Action

weekdays 10am to 4pm on 08456 011 033

Reply to October magazine

From Fred Waite“In the October edition of Challenging Migraine, Frances Graham asked if any other members were taking Naramig past 65. I am now 79 and also take Naramig as my preferred treatment for migraine. I can assure Frances that I have never been refused a prescription by various GPs.”From Margery Hargest Jones“Having read the letter from Frances in the October Edition, I am pleased to assure her that there is someone still taking (not Naramig but a Sumatriptan) at the age of 81! I have found, incidentally, that a cup of tea (decaff) helps after taking the tablet. I have also found that it is not possible to buy Imigran Recovery from the Chemist when over 65. When I started having migraines in the 1960’s as a result of going on the “pill” my doctor advised me to contact Migraine Action because they would know more about migraine than she did! I found it very useful over the years. Fight on!”

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come off the pills for at least 3 months to give my system a rest – and the migraines have soared to 24 days a month, which was awful for me (and my family). I’m delighted to say that after 6 weeks of taking magnesium, I began to notice

A very big thank you to Christine and her parents, Margaret and Alan Brown (also a member), for their recent fundraising! As gifts for their Diamond Wedding Anniversary, Margaret and Alan requested guests make a donation to Migraine Action. Thanks to the generosity of their family and friends, and their additional support for our 2015 Christmas appeal of £250, Margaret and Alan raised over £600 for Migraine Action!

Thank you! With Margaret, Alan and your support we will help more people, just like Christine.

my attacks were getting further apart and were shorter (instead of lasting 3-4 days, they were now 1-2 days). This improvement continued and I now only have an average of 3 days of migraines a month! Before, when I was on daily preventative medication on prescription, I was having an average of 8 days of migraine a month. In the summer I decided to wean myself off my daily prescription pills to see what happened, fully expecting my migraines to get a lot worse and I’d have to go back on these pills. But amazingly that didn’t happen. To now be off the prescribed pills and only taking Magnesium, I now have 3 days of attacks a month – it’s like a MIRACLE!!!I know that not every treatment works for everybody, but this has certainly transformed my suffering after nearly 5 decades. I buy my Magnesium from a local budget chemist (£2.49 for 3 months’ supply – they are the same strength as the much dearer ones in health food shops). I still take my prescribed Imigran pills when I have an attack, which lifts my symptoms within two hours. I feel like a different person and life is not the struggle it used to be. So thank you for bringing Magnesium to my attention in your magazine.

From Elaine BirchI’m 65 years old, and I have discovered something which may help migraine sufferers who have both osteoporosis and an under-active thyroid. It is simply this – by keeping my thyroxine dose four hours away from the calcium/D3 tablets, my migraines have gone from five a week to around one per month. I now take Calcium/D3 with breakfast, thyroxine before my midday meal, then the

second Calcium in the evening. I have a feeling iron also should be kept away from thyroxine and calcium too as, with me, it seemed to have a similar effect – so I guess we’ll all have to get up at about 4am to fit everything in! If this helps just one person I shall be delighted, though I hope it helps many.

Thank you to Migraine Action for your wonderful magazine which is so helpful.

25Helpline: 08456 011 033

Do you have a question on migraine? Do you have

a top tip on stopping a migraine in its tracks? Get in touch today and

share your experiences to help all take control.

Food for thoughtI suffered migraine for forty years before finding an important trigger food. My doctor was concerned with the number of migraines I was suffering, always with vomiting, and the fact that I only weighed about seven stone. So he referred me to a dietician who put me on an elimination diet. The big breakthrough came when I tested out ham. On the first day I ate ham I did not notice any change. I ate ham on the second day and began to suffer the warning signs that told me I was likely to suffer a migraine, and on the third day when I ate ham I had a migraine attack with the usual vomiting. I had no idea why ham gave me a migraine, but the dietician knew at once, telling me the preservative called nitrates was my trigger food. She advised me to avoid all foods containing this preservative. Now I do not eat ham, sausages, bacon, corned beef or any other food preserved

with nitrate, and I have not suffered those dreadful migraines ever since. Plus I now weigh over eight stone. However, I still suffer the old warning signs that tell me a migraine is coming, although it doesn’t materialise. I recently read in the paper that nitrate occurs naturally in many foods, especially beetroot, and I often wonder if this is the cause of those warning signs. I understand that the trigger foods are different for individual migraine sufferers, but it might be worthwhile giving up foods containing nitrates for a few weeks to see if it helps.

From Jill BurberryAs a life-long sufferer from migraine I have long felt exasperated by the belief of friends that stress is usually the cause, and have frequently and correctly, considered the culprit to be food. However, after a recent attack, having as I thought identified the culprit foods (red wine and pancetta), I did not want to throw the rest of the bottle, nor the food away and so consumed them again 2 days later. It was not followed by a headache. So I reviewed the day I became ill again and realised that although there was no big stress in it, such as I would have called stress, I realised that it was full of small stresses, e.g. a journey to visit friends during which I took a wrong turning, a lecture at which the member of the

audience sitting in front of me directly blocked my view of the speaker and a number of other things throughout the day. For me these are all minor problems to which I don’t usually give a second thought, but all taken together? I now understand that it was the sum total of the day’s experiences that did me in! I will view minor stress as a cause seriously in future.

From David McCarthyTwo years ago, I was diagnosed with high blood pressure and put on a daily dose of 5mg Amldopine. Since then, I have had no migraines – absolutely amazing! I thought Migraine Action and all the members might find this useful or interesting.


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News and ViewsMy brain is being rhythmically pounded by a boxer wearing gloves, pummelling with all their might, over and over and overWith no clinical test for migraine, description of our symptoms and what migraine is really like, are part and parcel with the condition. Explaining to GP’s, neurologists, but also family, friends and work colleagues what migraine feels like is the first step in receiving help and understanding.

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Migraine Insight is back for 2016!2015 saw Migraine Action travelling across the UK, from Cardiff to Manchester and far beyond. This year, we’re at it again! We will be first coming to Exeter this April and would love to see you there. With talks from leading migraine experts, complimentary treatment exhibitors and the chance to meet the Migraine Action team and fellow migraine sufferers, this is not an event to miss out on!“All the speakers were excellent... the information on the day was very comforting knowing that there is support there!”

We recently asked a number of our supporters how they would describe their migraines to a non-sufferer: “It’s like the entire Rio Carnival has congregated inside my head. Not to mention the aura.”

“My brain is swelling and attempting to escape out of my right eyeball or the base of my skull. And the aura, flip me,

that AURA! Sight gone, nausea, and occasionally fainting.”

“Vice grip smashing my head!”“Intense pain in eye (usually the left),

and constant sickness; spiders crawling in my brain.”

“A one tonne weight landing on my head and vice around it”

“Someone or something is squeezing my head, like a vise....”

“The first day you fear you’re going to die, the second day you hope you’re going to die. Day three vomiting then all better within an hour.”How would you describe your migraine to someone who thought it was just a little headache? Many non-sufferers still do not understand migraine, and we need your help in fighting back. For those lucky enough to never experience an attack, they don’t understand what migraine feels like and the impact it can have on every aspect of life. Until there is a cure, Migraine Action are here to fight for diagnosis, treatment and understanding. Will you join us in the fight against migraine misconceptions? Contact Migraine Action with your thoughts and experiences, and help us to fight back against migraine misconceptions.

Exeter Migraine Insight is available to book now at only £7 for members.

Contact us today [email protected]

or call us on 08456 011 033

to book your place now!


I looked into it a bit more and discussed with my acupuncturist, who I see weekly, and decided to go for it! I found a piercer and booked in. I had the right side done first and then went back a week later for the left side. It didn’t really hurt – it was a quick sharp pain, then pressure, and then it was through. Within a week I started to notice a difference and my daily headache pain reduced quite significantly. I also didn’t have a migraine, for the first month, then the second month and the third. On the 100 days anniversary I was struck down with a migraine, but by the next day I was feeling a bit better. I set up a Facebook group ‘The Daith club – for migraineurs’ and @daithclub on Twitter. Both have led to many hundreds of people being able to share their experiences about their migraine and the piercing. I’m hoping the one migraine I’ve had is a blip, but even to be 99 days migraine

A daith piercing is an ear piercing that passes through the ear’s innermost cartilage fold, the crus of the helix. Currently, it is unclear exactly the impact that this piercing has on migraine. Dr Thomas Cohn, a US doctor who specialises in pain relief, said a daith piercing may cure migraines in the same way as acupuncture can help the headaches. Additionally, there are some thoughts around the vagus nerve, whilst others look to the pressure from the swelling of the piercing helping to alleviate the severity of migraine pain. Whatever the reason, some migraine sufferers have seen a great improvement in the number of attacks or a lessening in their severity. One member of Migraine Action, Natalie Thompson, joined us on BBC Radio Leicester to talk about the success she had seen with her migraines thanks in part to the piercing. Natalie said, “I have had a headachefor almost 4 years, formally diagnosed with NDPH by my neurologist, coupled with at least several migraines a month. I happened to be looking online and found an article in a national newspaper about a woman in America, who had the piercing because she liked it and then realised that she hadn’t experienced a migraine since.

Daith to Migraine!In the last few months, you may have heard some of the hubbub surrounding daith piercing and the impact this simple and cheap piercing can have on migraine. So what is this daith piercing?

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free is fantastic! I feel much better and feel more confident about planning things. I’m looking forward to seeing my neurologist in February to get his opinion on it. I’m not headache free, I still have my daily pain but it’s more of a grumble at 3 out of 10 instead of 6-7 out of 10!”PLEASE BE AWARE that Natalie did not stop any medication or treatment that she was already taking prior to her daith piercing. Simon, CEO at Migraine Action said, “We have to treat the daith piercing with a degree of caution, especially in these very early days after the procedure has been done. As with any technique we would welcome the results of a clinical trial so it can be considered properly, to allow for a full understanding of the long term implications and effects of the piercing on patients. We would highly recommend that all migraine patients continue with the treatment that has been prescribed by their medical professional.”

If you would like to talk about all treatment options for migraine,

please contact us on our helpline weekdays 10am to 4pm on

08456 011 033

As with all treatments of migraine, unfortunately what works for one person can make the condition worse in others. Dr Andrew Dowson said, “The anecdotal stories are interesting, but there is as yet no detailed research to support its efficacy in migraine. For all the positive results we hear of just as many for whom the piercing had no effect.”We are keen to see the ongoing results of the daith piercing and hope that the success continues for migraine sufferers such as Natalie.

“I’m hoping the one migraine I’ve had is a blip, but even to

be 99 days migraine free is fantastic.”

cm january 2016

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