Contents

Migraine and Children

  • New Act for Schools
  • What can you do?
  • Our plans

New Device Available

  • Cefaly headband: the future?

Important medicines advice

  • For those taking Domperidone

Research Update

  • Migraine & men
  • Neurostimulation device

Fundraising

  • Too early to think about Christmas?
  • Fundraising at no cost to you

New website Coming Soon!

Migraine and Children

New Act for Schools – Sept 2014

On 01 September the Children and Families Act 2014 came into force.  This placed a duty on schools to make arrangements to support pupils with medical conditions. Guidance has recently been issued to schools on asthma and diabetes, but nothing on migraine, however migraine is more prevalent than diabetes and asthma combined and is the most common neurological condition in the developed world.

If a child has experienced migraine for at least a year and it has had an adverse effect on their ability to carry out normal day to day activities it would constitute a disability under the Equality Act 2010 and schools are obliged to make reasonable adjustments to meet their needs.  It is estimated that 7 to 10% of secondary pupils fall within this category; losing on average seven school days a year.

Particular triggers for inducing migraines in children at school include:

  • A disturbed sleep pattern
  • Missing meals or not eating enough
  • Not keeping fully hydrated
  • Stress: for example exams, approaching deadlines for work, family problems
  • Exercise or muscular stress, e.g. brought on by sudden physical exercise.
  • Environmental issues, e.g. bright lights, working on a computer screen for too long
  • Health, e.g. suffering from a cold, starting a period

Some of these can be managed and reasonable adjustments could include:

  • Allowing opportunities to drink frequently
  • Extended timescales for the completion of work
  • Permitting breaks from working too intensively on computer screens
  • Providing opportunities for healthy snacks/breakfast club
  • Opportunities to self-medicate (subject to medical advice)
  • Substituting yoga or other low energy activities for games
  • Taking glucose tablets before games, having a half time snack and taking lots of fluid before, during and after the game
  • Access to a quiet, dark room in which to lie down and manage an attack

What can you do?

If you know children affected by migraine, or if you are a child yourself please read our factsheet

here and if need be pass it on to the school if you think that better management of triggers during the working week could improve matters. If the child has not seen a specialist at National Migraine Centre then get them an appointment, the sooner a treatment and lifestyle plan is drawn-up the less the effect the condition will have on their education and chances of future success. Missed days at school can not only mean that children miss out academically, but can lead to problems with building friendships, self-confidence and can lead to deeper psychological problems if not addressed. We have produced a brief recommendation document for schools which has already been circulated in one London Borough.

Our plans to help child sufferers

From our point of view, we are taking this new Act as an opportunity to get press coverage on the subject of migraine in children. We also hope to seek funding for an educational psychologist to work alongside our doctors, the school, the child who is suffering and their parents, so that everyone involved is a part of the management plan to get the child in school and thriving. The cost for a full assessment and plan would be £500 so we would hope that with funding we could still offer this on a donation basis as we do our standard appointments. We are interested in gauging the demand for this service and would like to hear from you if you feel this would be useful to you. Please send expressions of interest to heather.sim@nationalmigrainecentre.org.uk.

New Symptom Reducing Device Available

Cefaly® headband, is it the future?

Many sufferers have called in to enquire about this device that hit the press a couple of months ago, we have assessed the research behind it and feel it is a worthwhile option to give patients at NMC.

Cefaly is a new, non-invasive electrical migraine device recently launched in the UK. The device, which is worn as a small headband, uses neurostimulation to reduce migraine symptoms. An electrode positioned at the centre of the forehead applies electrical micro-impulses onto the trigeminal nerve, a nerve which has been linked to migraine activity.

The headband can be worn for 20 minute every day as a preventative measure or at the beginning of a migraine to help relieve the symptoms of an attack. It is expected to take up to six weeks for the full improvement in symptoms to be felt, although some improvement has been reported after just one week.

It is not fully understood how Cefaly works, but research has shown noticeable results in the reduction of migraine symptoms for around 40% to 50% of migraine sufferers. In a recent study conducted in Belgium, 38% of patients who used the device noticed a least a 50% reduction in their migraine frequency.

Cefaly bears the CE Medical mark, and is certified to the ISO Medical standard. So far, research has shown minimal side effects: 4% of Cefaly users reported mild side effects and none reported severe side effects, compared to around 50% of patients using a pharmaceutical migraine treatment. Cefaly is safe for pregnant women and for children over eight years old.

The device is priced at £249 with a six week refundable guarantee.  For further information or to order please call reception on 0207 251 3322 or feel free to book an appointment to discuss the Cefaly, or other electric devices and non-drug alternatives with your NMC doctor to see what they believe is best suited to your needs.

Important Medicines Advice

Advice for those taking Domperidone (or Motilium) following recent concerns over cardiac side effects.

A little while back we shared this information with you but we know that not all of our patients saw it, so here it is again…

A recent Europe-wide review has recommended updates to the treatment advice for domperidone following evaluation of the benefits and risks of domperidone (see the full document here).

The review was triggered following continued reports of cardiac side effects and a small increased risk of serious cardiac side effects was confirmed. A higher risk was observed in patients older than 60 years, adults taking daily oral doses of more than 30mg, and those taking QT-prolonging medicines or CYP3A4 inhibitors concomitantly.

However Dr Sarah Branch, deputy director of the MHRA’s Vigilance and Risk Management of Medicines Division, says that there is no need to stop taking the medication:
“The benefits outweigh the risks of using domperidone when used to treat nausea and vomiting but that there should be restrictions on its use. It should no longer be used for symptoms of abdominal discomfort such as heartburn and feelings of fullness…if you have an underlying heart condition or have any other questions, please speak to your doctor or pharmacist at your next routine visit.”

We have asked our Consultant Dr Farooq Maniyar for his advice to patients:
“It is ok to still take  Domperidone but you must not take more than 10 mg three times in a day, and you must not take it continuously i.e. daily for more than  1 week in a row.  It should only be used as and when required. The suppositories can be used at a maximum  dose of 30 mg twice a day. Domepridone should be avoided if you have any heart problems or if you are taking certain medicines that can prolong conduction in your heart.”

He suggests consulting your doctor if you are taking any drugs and adds “Domperidone should also be avoided in people with liver problems.”

For more information contact reception on 0207 251 3322. They may be able to advise, otherwise they will book an appointment for you with a specialist.

Research Update

Migraine and Men study

You may have received an email if you are a previous NMC patient, male and living within a certain area of West London. We are working with a researcher who is investigating the subject: Living with Migraine as a Man. Those taking part will be interviewed encouraged to share their experiences to build up a picture of how it affects the relative minority of men what with migraine.Responses will be anonymous but we hope to share some findings with you in Migraine News early next year.

Neurostimulation Device Study

Despite a slow start after an issue with the sham device, we have now screened nearly all of volunteers for this study, so do not need any further participants at this stage. The portable device worn like headphones, with a hand-held control unit attached, is designed to stimulate the brainstem, where research has shown migraine headaches begin. It is non-invasive and painless so we think worth investigating. We will keep you informed of the outcomes.

Fundraising

Too early for Christmas?

Maybe we are a little premature but last year we had comments from a number of supporters that we notified them of our NMC christmas cards too late and they had already  bought their own. So this year we are getting them in early!

If you would like a some of our fun Christmas Pudding cards (see above),  kindly designed by a patient of ours, please get in touch with Rebecca.

All proceeds go directly towards treating migraine sufferers here at the Centre.

The cards are 15 cm x 10.5 cm and 50p each or £2.50 for 6, plus postage.

Fundraising at no cost to you!

If you are seriously organised and have started your Christmas shopping or are doing any other online shopping for that matter please go through Easy Fundraising first!

  1. Start at easyfundraising
    Let’s say you want to buy a book from Amazon. Instead of going to amazon.co.uk, go toeasyfundraising.org.ukfirst and select ‘support a great cause’. Choose National Migraine Centre and register in seconds with a few basic personal details.2. Make a purchase
    You click from the easyfundraising website through to Amazon to make your purchase. The price of the book is exactly the same as if you’d visited Amazon directly.

3. NMC gets a donation
After you have bought your book, Amazon will make a donation to our cause as a thank you for shopping with them. easyfundraising collect these donations for us, and it costs nothing!

There’s never been a better excuse to get spending!

 

New Website Coming Soon!

We are excited to announce that we will be launching a new and much improved website in early October. We have wanted to improve the usability and interactivity of our site for a couple of years now but have not had the capacity or funding to do so.

We were lucky to be approached by PR giant Ogilvy to do the work for us and launch the site alongside a PR and marketing campaign to get migraine and the NMC recognised and increase the number of people accessing our advice, treatment and support.

We’re aiming high and having seen the success of the ice bucket challenge recently we hope we can come up with some ideas that will bring social media alive with talk of headaches! Migraine affects so many so we really hope that this can achieve the funding and exposure that the charity needs so that we can help even more people.

The first step was collecting patients’ stories for videos on the website, which so many of you kindly volunteered to be a part of. Again, the donation of time and skills came in very useful in the form of our BBC news editor trustee Mark Perrow and his cameraman colleague who together made a slick job of capturing 10 eye-opening stories of our patients’ battles and victories living with migraine.