STARS Issue 31, August 2009 by www.heartrhythmalliance.org

The uts o k c Bla rust T AUGUST 2009 : ISSUE 31 WORKING TOGETHER WITH INDIVIDUALS, FAMILIES AND MEDICAL PROFESSIONALS TO OFFER SUPPORT AND INFORMATION ON SYNCOPE AND REFLEX ANOXIC SEIZURES

STARS Founder and CEO awarded MBE Although she is extremely honoured and thrilled to receive this award, Trudie’s happiness is tinged with sadness as it is only just over a year since her husband, Charles, died. As many of our long standing members know, Charles was an integral part of ‘Team Lobban’ and Trudie was the first to acknowledge this when the announcement of the award was made. John Camm, Professor of Clinical Cardiology at St George’s University of London Hospital spoke for many of his medical colleagues when he said:

Professor John Camm with Trudie Lobban MBE

rudie Lobban, Founder and Chief Executive of STARS was awarded an MBE in the Queen’s birthday honours list for her work for STARS and services to healthcare. Trudie has devoted the past sixteen years to running the charity, which was founded in March 1993 after her daughter, Francesca, was diagnosed as having RAS. Francesca has helped many of you over the years as she is the Youth Helpline assistant and also regularly posts on the STARS syncope message board. Trudie has an older daughter, Charlotte, who is studying to be a doctor at Leeds and who also suffered, albeit mildly, with RAS. Charlotte works tirelessly behind the scenes for STARS, ensuring you all receive your monthly ebulletins on time!

“It was a wonderful surprise to learn that Trudie Lobban had been awarded the MBE – there is no-one more deserving of this honour. Trudie has worked long and hard for children with the dramatic symptoms of sudden loss of consciousness. Her work has made a huge difference to both these children and their parents. I am very impressed by the energy and dedication that Trudie gives to this and her other charities in the field of heart rhythm disturbances. Her work has improved the quality of life for so many.”

Cong ratulations, Trudie! ngratulations to Trudie I extend my warmest co BE. on being appointed an M e important work! th Well done and keep up

Sir Roger Moore KBE

Patrons: Prof. John STEPHENSON, Dr William WHITEHOUSE, Prof. Christopher MATHIAS, Prof. Rose Anne KENNY, Dr Adam FITZPATRICK, Dr Wouter WIELING, Sir Roger MOORE, TWIGGY Lawson, John BURTON RACE, Sir Elton JOHN www.stars.org.uk

Registered Charity No: 1084898

info@stars.org.uk

‘Know your Pulse’ Arrhythmia Awareness Week 8th – 14th June 2009 STARS members have been raising awareness of the importance of taking your pulse! STARS supported Arrhythmia Awareness Week (AAAW), which was held from 8th–14th June, when over 1100 events from the north of Scotland to Cornwall were held to launch the ‘Know your Pulse’ campaign. As they do every year, our members were at the front of the queue when invited to support the ‘Know your Pulse’ campaign. Posters, display packs, leaflets for GP and dental surgeries and pulse check cards were all distributed by STARS volunteers. The 2009 Pulse Awareness campaign had begun. This year’s campaign has created unprecedented interest and is now the start of a long term goal – to be ‘Pulse Aware’.

Arrhythmia Nurse, Nicola Meldrum taking the pulse of local MP, John Maples

Pulse awareness is as vital to our well-being as having a regular check for blood pressure. This drive aims to ensure that any potentially fatal heart rhythm condition is spotted in the young and to alert geriatricians and carers for the elderly that syncope is one of the most common reasons for falls in our older generation. The good news, therefore, is that if any STARS member who missed the Awareness Week feels motivated to get involved, there is still much to be done and we can support any events with our now famous ‘Pulse Check’ cards, leaflets and posters for your local surgeries, or even a ‘Pulse Check’ session during a science class at school. STARS volunteer, Alison Pena persuaded her local health and fitness club in Hadleigh to display posters and leaflets during AAAW 09 and hold a pulse check day. It generated a lot of interest and increased awareness of syncope and arrhythmias. Cameron Tan and Gill Rawlinson (pictured far left) did the pulse checks and Alison’s children, Rhys (11 years) and Catrin (7 years) proved that you are never too young to raise awareness for STARS! Their support, enthusiasm and commitment was infectious as they sent STARS a cheque for over £100 and have offered to help next year! To download your FREE pulse check card and view Sir Roger Moore taking his pulse, visit www.knowyourpulse.org

STARS Patron, Sir Roger Moore, was one of the first to offer his support to the ‘Know your Pulse’ campaign. Days prior to the launch, Sir Roger made a video demonstrating how to take your pulse and reinforcing the message that this is one of the easiest ways to detect a heart rhythm disorder. To see this video visit www.knowyourpulse.org During the launch week, This Morning also featured their resident doctor, Dr Chris, who showed the video whilst talking about arrhythmias and the trouble they can cause if undetected.

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SaFE supports ‘Know your Pulse’ campaign At the beginning of this year STARS embarked on a new campaign, SaFE (Syncope and Falls in the Elderly), to promote accurate diagnosis and treatment of syncope in the elderly. SaFE has been campaigning passionately to highlight the disruption that undiagnosed syncope can create and raise awareness of its link to falls in the elderly. With this in mind, STARS would like to see all flu check clinics offer pulse checks too. So, if you would like to help, whether you personally have experienced syncope as an older person or whether your parent SaFE campaign officer, Pippa Mawle or grandparent are sufferers, why not order your pulse check with Andrea Meyer and Mary-Ellen Westwood cards now to pass on to your local GP centre. Be ‘Pulse Aware’ and help make this year’s flu vaccinations an even greater healthcare event.

Think Flu Jab, Think Pulse Check!!

Westminster Launch of ‘Know your Pulse’ Campaign The week started on Monday 8th June with a Parliamentary reception at the House of Commons. STARS volunteers with their husbands, wives, friends or parents, travelled to Westminster to show their support for this campaign. Trudie Lobban MBE, founder of STARS, underlined the importance of the campaign and announced that the ‘Know your Pulse’ campaign was not just an event for a week or a month; it was a campaign which would continue until pulse checks become a routine check for EVERY patient visiting their GP.

STARS member, Hannah Nicholson and Alison Vowles

We are campaigning to ensure pulse checks are taken during routine visits to a GP surgery, to promote timely diagnosis and treatment of heart rhythm disorders. Please take a couple of minutes to sign our e-petition to help make this happen. Visit http://petitions.number10.gov.uk/KnowYourPulse/

Nikki and Harminder Gill (read Harminder’s story on the new STARS website when launched at Patients Day on 18th October 2009)

Jenni Cozon with Robert and Jane Naylor

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FINALLY I KNOW WHAT IS WRONG WITH ME T

hree years ago I had a brilliant job that I loved but because of my falls and other symptoms I was accused of having a drinking problem by people who would gain financially if my reputation was damaged. Although the allegation was completely without foundation we could not find a doctor who could explain why I fell so often without warning. I thought I was going insane. Finally, I was made redundant despite the support from clients and friends who knew me well and, of course, my wonderful husband of 35 years.

“Not once was I ever referred to a cardiologist.”

Mary Ellen Westwood

was suffering from “migraines without headaches”?! I think this is medical shorthand for “neurotic woman”. I had a very high profile job, was regularly interviewed in the media and, as an expert witness in international courts, I had to remain calm and collected at all times. That is difficult if you fall over without warning. My colleagues had teased me about falling off my beautiful Christian Louboutin shoes but I knew my shoes were not the cause. More often than not I fell when I was standing still. I thought I was clumsy.

We finally found out what was wrong in January, the week I turned 60. Just before Christmas I was riding my bike along the Thames path from Barnes to Petersham. I got off my bike to cross at the pedestrian crossing to go into Richmond Park. The next thing I remember, I was lying on the road surrounded by people. I was helped up and someone wheeled my bike over to the gates. I thanked my helpers then got back on my bike and rode the four kilometres home.

“More often than not I fell when I was standing still. I thought I was clumsy.”

When I got home I told my husband. He said he had had enough of these falls and that he would go to the doctor with me. We have been at this practice for almost 20 years although I had always seen other doctors not my husband’s GP. I had been suffering from severe vertigo from time to time and awful visual disturbances, weakness, tiredness, inability to climb stairs and nausea which was very distressing. On several occasions I had been rushed to hospital only to be told there was nothing wrong or that I had a virus.

The visit to my husband’s GP was a revelation; I can’t help but believe all women should take their husbands to the doctor with them. Finally someone took me very seriously; after hearing my story he said he wanted to read all my records and that I should come back the next day. We did and he referred me to a cardiologist and advised that I should stop taking the beta blockers. He said “I think you have syncope”.

I was referred to neurologists, ENT consultants, rheumatologists, ophthalmologists and sent for CAT Scans, MRIs and received numerous other tests. I was tested for brain tumours, MS, Parkinson’s and a stroke. I had always been proud of my low heart rate and assumed it was because I had trained as a swimmer when I was young in Sydney and run marathons and other road races for over twenty years. Not once did any doctor in the UK ever suggest that my pulse was dangerously low nor was I ever referred to a cardiologist. Despite the falls, none of the three neurologists I saw ordered an EEG. One gave me beta blockers which made me collapse more often.

Within two weeks of seeing the cardiologist and having a lot more tests, I was diagnosed with syncope. Why did I have to wait all these years for the correct diagnosis? In March I had a loop recorder implanted at St Mary’s Paddington. I have the most wonderful and considerate care from the syncope team at the hospital. Two weeks ago my cardiologist decided that I should have a pacemaker implanted, so on Friday I will be back at St Mary’s with the lovely team. Hopefully I will be able to get back to normal. I have now returned to work on international TV networks commenting on the latest financial issues and hopefully after the pacemaker implant I will be able to get back to full time work.

It is very clear that many of the doctors I saw believed I was neurotic and most of them concluded that I

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Mary Ellen Westwood London

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SaFE Syncope and Falls in the Elderly

Mary Ellen’s story is indicative of many thousands of older people churning in the healthcare system misdiagnosed and without the support mechanisms for syncope. The National Audit of the Organisation of Services for Falls and Bone Health of Older People, published in March 2009, found serious gaps in the aftercare services for those who have had a fall and found that a staggering 50% of Primary Care Organisations do not check for heart conditions, which can cause fainting. As a result, STARS has developed a new project ‘Syncope and Falls in the Elderly’ (SaFE) which aims to promote accurate diagnosis and treatment of syncope in older adults, promoting awareness of syncope as a cause of falls. Information sheets specifically for older adults with syncope are now available from STARS. To request your copy email safe@stars.org.uk or phone 01789 451 833.

BACK TO SCHOOL Many of our younger sufferers will be facing school for the first time in September. Some will be going to nursery whilst others will be heading for ‘big school’!! This is a daunting time for mums as well as the children! Don’t forget, therefore, that we are here to offer support and advice. Our education site, www.education.stars.org.uk contains a wealth of information, including the essential Care Plan which is an excellent tool for schools to ensure that all staff are familiar with how to care for the pupil with RAS should he/she have an attack. This can be downloaded and there is also a sample to illustrate how it could be completed.

New school? Star ng University? If you are a young person or a student under 21 years, have you thought of joining the moderated STARS Youth Forum? Here many of our young members enjoy ‘cha ng’ with other suﬀerers of RAS or syncope. Our members will understand how you feel, will be sympathe c and you will ﬁnd them very friendly. It is free and simple to join - just follow the links from the STARS Educa on website www.educa on.stars.org.uk No contact details or full names will be disclosed but some mes it may be necessary to edit a message.

Dear STARS I just wanted to say thank you for the cards that you offer so I can show my teachers and keep them in case I faint. Lately I have had the cervical cancer jab and was worried about fainting but thanks to your cards it helped the nurses to look after me. THANK YOU SO MUCH! From Camisha NAME:

Our Alert Cards are still top of the request list for information. Every child should carry one and it is advisable that family and friends should also have one for reference. They really work by reassuring worried relatives or friends who have the child in their care for a few hours!! These cards cost £1 for 20 and can be ordered from Jenni Cozon, STARS, PO Box 175, Stratford upon Avon, Warwickshire, CV37 8YD. Just send a one pound coin with your name and address, marked RAS or syncope cards.

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I suffer with Re

ﬂex Anoxic Seizu (this is not connec res ted to epilepsy and is NOT life threaten ing) Please make sure I am safe Please put me in the recovery position Please talk quietly to me and wait for me to regain consciou sness (normally only 1 or 2 mins) CALL IMMEDIATE LY: If injured or con cerned also call

for EMERGENCY

SERVICES - 999

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RAS Q A Q A Q A Q A Q A

The Most Frequently Asked Questions

My mum, who is a nurse, is not convinced my daughter has RAS. Why does she say this? I am waiting to see a Paediatrician for a diagnosis. Unfortunately many medical professionals have not heard of RAS, so it is frequently confused with epilepsy – in fact 39% of children and 30% of adults with epilepsy are actually mis-diagnosed, which is a huge proportion. This is why it is so important to ensure a correct diagnosis. RAS can look a lot like epilepsy.

My son has just been diagnosed with RAS. He is very pale and our health visitor thinks he might be anaemic. Could this be due to RAS? RAS does not cause anaemia but lack of iron in the blood can be the cause for some attacks. Some parents have found that the frequency of attacks is improved once a child’s iron levels are normal. My child keeps saying his legs hurt. Is this normal? Unfortunately, yes! This is very common in children with RAS and some also complain of chest pains. Our STARS survey showed that 57% of children complain of leg pains and 26% of chest pains. We do not exactly know why but it is an accepted symptom of this condition. The reassurance of you gently rubbing the legs will help when this happens.

Is there a link between RAS and Autism and Asperger’s syndrome? To date there is no medical evidence to prove a link to these conditions, although many parents do report that their child has also been diagnosed with mild Autism or Asperger’s syndrome.

Is it safe for my son to have his MMR? RAS should never prevent your son from receiving his inoculations. It is advisable to tell the nurse beforehand and she may decide to use some anaesthetic cream to numb the area. With an older child it is often easier to warn them that they are going to have an injection, say it might hurt a little but that ‘mummy’ will be holding them tight and afterwards ‘we will do something nice’. This is to avoid the shock/fear that accompanies a visit to the nurse and could trigger an RAS attack.

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Q A Q A

My daughter keeps holding her hands over her ears when her brother is playing his music and recently she does not seem keen to go to parties. Do other children with RAS act like this? Children who suffer with RAS are super-sensitive and everything seems twice as loud as it would to you or I. In fact it ‘hurts’ their ears. This is one of the reasons children with RAS are often quiet and prefer to play by themselves or with one friend.

What is the difference between breath holding and RAS? RAS is beyond the control of the child. Breath holding is within the control of the child. A reflex anoxic seizure can be triggered by any unexpected stimuli such as unexpected pain, fear or fright, or fatigue and illness. Breath holding occurs when a child is upset and angry and starts screaming in the form of a temper tantrum. During this outburst they will stop and hold their breath until they pass out for a few seconds. Both RAS and breath holding attacks are very frightening to witness but they are not life threatening.

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My son is due to go to college soon. Will there be any problems with insurance? Colleges, schools and playgroups should always be made aware of a student or child’s condition and should advise their insurance companies accordingly. Travel insurance companies should be informed of the person’s condition and may require a doctor’s letter to certify the person is fit to travel. This should not increase your premium. Have you looked at STARS Education site? www.education.stars.org.uk There is a wealth of information and support materials for sufferers and their families.

We are going through a period when my daughter is having frequent RAS attacks. Do RAS attacks cause any damage to the brain in the long or short term? No, there is a ‘fail safe’ mechanism in the brain that will restart the heart and breathing before the oxygen level is low enough to cause damage. Ear Piercing! My daughter wants to be like her friends and have her ears pierced, but I am worried that she will have an attack. Help! Do not worry! It is usually the unexpected pain or surprise that causes an RAS attack. Firstly, as it is something your daughter has requested, there will be no element of surprise and she will be aware that it may hurt and what the procedure entails. On the day, although her blood pressure will be higher through excitement, it is advisable to ensure that she has plenty to drink and something to eat to ensure she will not be dehydrated or suffering with low blood sugar. There is an anaesthetic cream which can be purchased from a pharmacy that will numb the skin. We suggest you check with the salon when you make the appointment that there would be no problem if this was used.

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Happy Families

Regular readers of the STARS newsletter and visitors to the syncope message board will know that there is a new member of the Kiernan family! Eva Joanna arrived on Monday 18th May, first baby for Anita and Eric Kiernan. Belated congratulations to one of our favourite volunteers whose family could not have done more to support STARS, be it with articles or fundraising.

From L to R: Glen, Anita with baby, Eva Joanna and Eric Kiernan

On 26th April when Anita was preparing for the birth and others were attempting the London Marathon, Glen Kiernan was running a little further from home. He was in California competing in the Big Sur Marathon.

To allay the worries for all our POTS sufferers who are pregnant or are thinking about it, Anita has said that despite feeling wobbly with POTS and in quite a lot of discomfort following a caesarean birth, by day three she was managing to care for Eva through the night on her own and was soon allowed home back to Eric! Positive news!! She knows you are all longing to read her account of being pregnant, the birth and coping generally and she has promised this will be ready to feature in the Christmas newsletter and perhaps the launch of the new STARS website!

“Just over 3000 of us are lined up as the sun is rising, I’m looking around thinking that not everybody can be mad; on reflection, yes they all are!! After a rousing rendition of the American national anthem and the release of doves, we were off…..The final few miles were a genuine slog but it made the sense of achievement crossing the line all the better – I have raised £1524 for a great charity and finished what I started.”

Meanwhile, congratulations to Eric and Anita on the safe arrival of Eva Joanna and bravo to her brother in law, Glen Kiernan…..

What an achievement and it was for STARS!!!! Thank you and all your sponsors for their generosity.

Dress Down For STARS Employees of Aon in Glasgow threw off their smart ofﬁce attire for STARS and raised nearly £400 for STARS. They all paid £1 to enjoy a ‘relaxing’ day at work and STARS received a very generous cheque!! A HUGE thank you to everyone who was involved, particularly Katy Clelland who organised the day and Cathryn McKinnie who nominated our charity because her daughter, Claire, used to suffer with blackouts.

Girls putting their best feet forward… Hannah Nicholson and her friend, Alison Vowles ran the Bath Half Marathon in March this year all in aid of STARS. The girls raised a total of £174 which reflects the outstanding effort they both made to run the 13 miles in just under three hours. What a wonderful achievement! Hannah’s recent survey, ‘Should all children with syncope be given support to assist their education?’ has been very well received by her tutor and fellow students on her course. A full summary will be available on the new STARS website in the autumn.

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OUR fundraising STARS Dance Spectacular!

THANK YOU

Special thanks to everyone who has helped STARS since the last newsletter. In March, STARS was presented with a cheque for £1500. A fabulous donation from Robert and Jane Naylor who have been STARS volunteers for many years. Robert, as President of the Rutland Agricultural Society, chose STARS to benefit during his year in office. Last year Jane was interviewed for SAGA magazine and following the article being published, STARS received well over one hundred new enquiries. There are so many ways to support STARS… Thank you.

In June, Kelly Abraham and her dance school Dance Express took part in ‘Music’, a show which took to the stage at Nuneaton Arts Centre. The two day show was a huge success with performances from mini tots to adults performing to music from the musicals Mamma Mia and Oliver. The show raised a fantastic £416 for STARS from money from the raffle and donations from parents who placed messages in the programme for their children.

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Jane Laming pictured below at a ladies’ group, decided to put her biscuit tins to good use. Jane encouraged friends to give to STARS. “My first contribution of £20 to an excellent charity and long may I be fit enough to carry boxes of tins into chapel halls and to talk about them for an hour with ‘enthusiasm’”.

We say a huge thank you to Kelly and Dance Express for choosing STARS as their chosen charity to benefit from the show. What a performance from STARS supporters!

Could you raise money for STARS? Funds are desperately needed to support the helpline – a vital service that provides informative and friendly support to all callers. STARS is totally reliant upon fundraising to operate. Please help us to continue this much needed service…. Could you make 2009 the year you acquired a fiver for STARS, just like Alex?

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Lucky STARS!

Big thanks must go to Danielle Fowler who raised over £150 by doing a tribute to ABBA! The event was held at Danielle’s school as part of an “X Factor” style competition. Well done Danielle and thank you!

Alex Graham, Managing Director of Prontaprint (Stratford upon Avon), turned sleuth recently when he found a wallet lying on the counter. After much detective work he managed to track the owner down, who was so grateful he left a £5 donation for a charity of Alex’s choice. Guess who he chose! Thank you, Alex...

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In April, Linda and Nicola McGillivray and their friends took part in a 15 mile sponsored walk and raised a magnificent £700 for STARS. “It was a lovely day but we suffered the next morning. However, it was worth it knowing it was for such a great cause.” Well done to you all and thank you.

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When her local paper heard that Chescka Harvey was suffering with RAS they asked her Mum, Parvin, to write an article on the condition. After reading the story, Milton Keynes local Lions’ club decided to donate £100 to STARS – So thank you, Parvin, Chescka and The Lions!

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A STAR TRIATHLETE I have been a sufferer of RAS (albeit with pretty infrequent attacks) for most of my life but have always loved exercising and trying out new sports. Since having my son Luke, now 2, my exercise regime was slowly grinding to a halt so I decided to set myself a new challenge and signed up for a (short-distance) triathlon. This involved a 200m swim, 10 mile cycle ride and a 3 mile run, one after the other. Luckily, I have never had a syncopal attack during exercise. I believe this is because I choose sports which require aerobic fitness (i.e. are performed at a moderate level of intensity over a relatively long period of time) rather than the more intense anaerobic types of exercise such as weight training. The sports which make up a triathlon therefore suit me well. It was tricky to fit training in around work and childcare but by cycling to work, swimming very early before my husband went to work and running during lunch breaks, I just about managed it! I completed the event in Crowthorne, Berkshire in 1hr 16 mins and managed to raise over £200 for STARS. Mandy Warren Berkshire This is an amazing achievement Mandy, you will inspire other syncope sufferers who are wary of joining in sporting activities. The £200 you raised for STARS is equally fantastic!! Thank you.

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STARS OUT IN FRONT If anyone is a follower of the national Ford Fiesta Championship, you might have noticed the new STARS logo emblazoned on the side of a certain car – STARS member, John Findlay, can be found most weekends at the various race tracks, from Silverstone to Brands Hatch to Snetterton, successfully competing in his STARS decorated Ford! John suffers with deglutition (swallow) syncope, but thanks to his pacemaker is able to lead a full and active life!! Thank you, John for raising awareness for STARS in this novel way.

Coming soon for STARS…

NEWS FLASH

STARS will see the exciting launch of our revamped website at Patients’ Day on 18th October 2009. Be the first to view it when you attend the day (full details on back page)! The updated STARS website will feature new information resources for patients and medical professionals, including a section on specialists in the syncope field, information on Postural Tachycardia Syndrome (POTS) and Syncope in the older adult. The website will also feature the new STARS logo. STARS is also set to launch an Education DVD to support the work of the ‘Shine a Light on Education’ programme. Since the programme’s inception there has been a huge demand from families, teachers and school nurses for support on how to approach and manage children and young adults with RAS, syncope and POTS. As the only organisation dedicated to supporting sufferers of these conditions in the UK, we knew it was essential for us to provide a resource to allow more schools to receive information and learn about how to manage syncope in children. Watch out schools!

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A Newcastle perspective of Positional Orthostatic Tachycardia Syndrome (POTS) studies performed in cohorts today would suggest better outcomes.

Positional Orthostatic Tachycardia Syndrome (POTS) is a condition where sufferers experience an increase in heart rate (tachycardia) upon standing up. This can sometimes be so severe that it affects normal activities of life, such as bathing and housework. Even eating can sometimes be significantly limited. The severity of these symptoms and how they impact upon function are said to be similar to those seen in common conditions such as chronic obstructive pulmonary disease and congestive heart failure.

There are currently no licensed medications for the treatment of POTS and to date there have been no randomised controlled trials. A recent retrospective case series of 152 patients with POTS from the Mayo clinic underlines the current dilemmas faced by clinicians when seeing patients presenting with POTS. This study (the biggest published to date) describes 11 different treatments including 8 medications. So at the moment, treatment needs to be managed on a case by case basis until there are suitably large randomized controlled trials to inform our practice as to the best treatment.

Historically, many patients with POTS were given a diagnosis of Chronic Fatigue Syndrome / ME, anxiety or panic disorder. A recent cross sectional study performed in Newcastle has confirmed that 27% of those with a diagnosis of CFS have POTS which is important when the public health implications of CFS/ME, and fatigue in its more general sense, is considered.

In our unit we aim to individualise treatment and to focus upon management of the symptoms that are causing the patient most distress. The first things we do are to discontinue potentially culprit medications if possible and identify and treat any conditions that could be causing POTS (e.g. amyloidosis or cancer).

In the Falls and Syncope Service in Newcastle we have recently looked at the numbers of those with POTS that are being seen in our clinics. Over the last 10 years we have seen over 70 patients diagnosed with POTS. These are predominantly females and most have been unwell for several years before we have seen them. The numbers of patients we are seeing with the diagnosis of POTS seems to be increasing year on year which either suggests that the condition is becoming more common or more likely that it is being increasingly recognised as a diagnostic entity by clinicians.

In addition to using medication, we encourage all patients to begin a gradual program of physical reconditioning particularly focusing upon gentle resistance training of the lower extremities and abdomen in order to strengthen the skeletal muscle pump. We try to ensure that patients with POTS have adequate fluid intake of around 2 litres per day (this should only include a small (5 cups) proportion of caffeine). Also, elasticated compression stockings are sometimes helpful when they provide at least 30 mm Hg of ankle counter pressure.

POTS can affect any age group but the majority of the patients that we see are young or middle aged. However, the oldest person we have seen with POTS was 82 years of age, so it is important to consider the diagnosis even in older age groups.

In terms of the future, we have recently started using one of the newer heart rate controlling medications that have come onto the market (Ivabradine) and there are several new treatments that are on the horizon that have the potential to offer real improvements in the management of POTS. What is urgently needed are randomised controlled trials of new and more established treatments so that we can fully inform our clinical management of patients with POTS.

One of the questions that I am frequently asked in clinic is – ‘Will I get better?’ Currently, there is only limited data available on the prognosis of patients with POTS, so it is difficult to be sure what are the chances that someone who presents with POTS tomorrow being better in 5 years. Although in the few studies that there are, outcome can seem fairly bleak, I think it is important to realise that these studies were performed before we understood POTS and before we had the range of medication options that we have today. I believe that

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Julia Newton Professor of Ageing and Medicine Falls and Syncope Service Institute for Ageing and Health Newcastle University

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SYNCOPE FROM A CARER’S SIDE OF THE FENCE

However, as Jennifer’s syncope is caused by both heart rate drop and blood pressure drop a pacemaker would only help to a certain extent, and so our cardiologist decided to put that on hold.

hen this peculiar condition first hits, your main reaction is, SHEER PANIC!!!!!!!!!! How can a normal healthy 13 year old suddenly, and for no apparent reason, start to faint when least expected?

This was what I was confronted with over 6 years ago. My daughter Jennifer, who is the youngest in our family, went from being a lively healthy teenager who had completely controlled asthma, to this child who for no reason would drop suddenly into unconsciousness and not come round for up to maybe four hours. She would stop breathing, her heart would stop and then race like a runaway train, her asthma would be set off, and that made things really scary. She would have seizure like movements while coming round, her hands and feet were freezing and yet the rest of her body could be very warm and many times her temperature would be raised.

She has learned to live her life with syncope and stop fighting for a way to stop it. The result? She stopped all drugs, apart from those to keep her asthma under control and she now has somebody with her if she goes anywhere. When she returned to school initially we gave them all the information and they put in place the necessary safeguards, the same happened when she started at college. She passed all her school exams, graduated from college with an HND and is now actively searching for the right career for her. Jennifer’s syncope? Well the fainting has reduced from 2-3 times a week to once a month and she never lets it stop her from doing what she wants to do. All she can do is be aware of the risks and try to see ahead and deal with them. When she stopped fighting to be “normal” and accepted what was happening, things started to settle and her life became easier. She no longer has to suffer the side effects of the drugs she was taking, and the problems they caused, now she just enjoys life.

“TEENAGE GIRL, IT IS HORMONES” Our first stop was the GP and while he was concerned, his reaction was “teenage girl, it is hormones”. I did not buy into this diagnosis, and after a few months insisted on further investigation. We went to the paediatric specialist who did every test she could think of and the only result that was abnormal was Jennifer’s heart rate, which was higher than “normal”. So off we went to the cardiologist who again did all the tests, heart monitors for 24 hrs, then 7 days, then echocardiograms. He found nothing untoward until the Tilt Table test finally gave us the diagnosis of Vasovagal Syncope. At this point I was sure that we would be told how to cope and that there was a drug that could control this. Well there were no guidelines and no drugs, apart from travel sickness pills which did absolutely nothing. The cardiologist at this point could only suggest that Jennifer went away and learned to live with fainting.

I think the moral of this story is ACCEPT what you have, learn to live with it, and do not stress over it; be open with others and tell them what to do if it happens, then get on with your life. I know it is not easy for those of you who are still battling to see that there will be better times, but you must believe that there will be. Sometimes there will not be a drug which will help but taking a more relaxed approach to what is happening and learning all there is to know about this sometimes complicated condition is enough to reduce the episodes; it did for my daughter.

Fortunately for us, I was reading a newspaper one day and found an article about a lady who had fainted. After reading it, I realised that in almost all respects this article described what was happening to our family; that was when we found STARS. I was on the internet like a shot and everything started to make sense. I phoned and was sent all the information that we needed, and when we were put in touch with the cardiologist who understood syncope we were….not on the road to a cure….there is none…. but on the road to living with syncope.

“STRESSING ABOUT IF IT MIGHT HAPPEN CAN ACTUALLY MAKE IT HAPPEN.” STARS with their vast knowledge of all forms of syncope, the information leaflets, and all the support that comes with them, helpline, website, discussion boards have been the best medicine of all, not just for Jennifer but for the rest of the family. Just knowing that you can ask for help from people who understand.

We are now nearly seven years down that road. My daughter has tried the drugs route and she was offered the chance that a pacemaker may help.

01789 450564

Jane MacKay Scotland

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info@stars.org.uk

Speaks for you, when you can’t!

Arlene Phillips, BBC1’s Strictly Come Dancing Star, is a great supporter of MedicAlert, saying: “It doesn’t matter how minor your medical condition may be, there is always a chance that something could happen to you and you rely on MedicAlert to save your life.”

The MedicAlert Foundation is the only non-profit making, registered charity that provides a vital lifesaving service for children and adults with hidden medical conditions and allergies. Medical identification ensures that in an emergency situation those around you would know that you have a hidden medical condition. Wearing an Emblem also ensures that all information on medical conditions, medications and next of kin is available.

Arlene Phillips wearing her necklet

How to become a member

MedicAlert recently launched a new website. This new site provides an opportunity to view the Emblems more closely and has a greater range of information for healthcare professionals. www.medicalert.org.uk

Membership starts at £25 plus the cost of your choice of Emblem. As a special incentive for STARS members, if you call freephone 0800 581 420 and quote STARS you will receive a discount of £5 from the initial joining fee.

MedicAlert members wear either a bracelet, necklet, wristband or watch, known as an Emblem, which bears the international symbol for medicine. It is engraved with important medical details such as main medical conditions, a personal ID number and a 24 hour emergency telephone number providing access to the member’s medical records and personal details from anywhere in the world in over 100 languages.

One of the fastest selling Emblems is the ‘Sweetie bracelet’ which is first choice for many girls. To view the entire range of the latest award-winning stylish jewellery, suitable for children, women and men, go to www.medicalert.org.uk. “In an emergency situation it is essential that ambulance professionals receive as much information about a patient’s condition as quickly as possible. MedicAlert holds a detailed record for each individual, this can include medication, blood group type, target INR, next of kin, organ donation wishes and other important information.” Dr George Sikharulidze, Head of Services - The MedicAlert Foundation

The latest sweetie bracelet

SUMMER WORDSEARCH A F A E C H C K G A L A S E W A L L

O P S O A O W Y K E W L C R L Q F C

G P A D D L I N G N S U N I P U S S

F L T E F I U R I O P L I W A N U G

A L O T B D R O F E D A Y S G L N E

N Q B J L A A U J A K U R J N L S U

S B E C G Y R K A L X G J Q I D C O

W I A B A Q H B B B E U S L D K R F

X H C D K R P E E U T S Z O D E E L

01789 450564

R H H S S N D N A Q A T L C E F E O

A Y N E L I U S Z R U D R O W E N W

H R T Q Y J E T A N N E D H W E N E

O E N S F V I L A V U D H C A R F R

T L E I T V W E P T E E D I S A E S

L D U I I R E O M A N C E C I I F L

K I M I D S U M M E R L L Y L U J D

AUGUST BARBEQUE BEACH CAMPING FANS FLOWERS GALAS HOT HOLIDAY JUNE JULY MIDSUMMER PADDLING SEASIDE SUN SUNSCREEN TANNED WEDDING

There are 18 words connected with summer in the list. One of the words on the list cannot be found in the grid. The answer is at the bottom of page 14. At the end of last year I decided to do some fundraising for STARS but what to do? So many things to choose from. Then it hit me to do a Valentines Wordsearch. It wasn’t a run of the mill one. I had 17 words there but one of them was not in the grid. Although being a novice it was really fun to do and I have raised £60.00 doing this. I’m hoping to make it an annual event here and hope that I will be able to raise a lot more next year. I have had a few tips from veteran fundraisers up here to help.

www.stars.org.uk 13

Katrina Christie Shetland Islands

info@stars.org.uk

Have you considered becoming a subscriber to STARS? It is only with annual subscriptions that we are able to continue to provide the current level of support and advice that many of you benefit from. Despite the fact that STARS is equally affected by the economic climate as the majority of our members, we have decided not to increase our subscription.

The benefits of being a subscriber for only £15 per year are that you will: REFLEX SYNCOPE

(VASOVAGAL SYNCOPE)

REFLEX ANOXIC SEIZURES (REFLEX ASYSTOLIC SYNCOPE)

DO YOU OR DOES YOUR CHILD SUFFER FROM UNEXPLAINED LOSS OF CONSCIOUSNESS (BLACKOUTS)? HELPING YOU AND YOUR DOCTOR REACH THE CORRECT DIAGNOSIS FOR UNEXPLAINED LOSS OF CONSCIOUSNESS

Receive a password to the subscribers only area on the STARS website Receive an information pack containing relevant STARS booklets that are only available to subscribers

“Working together with individuals, families and medical professionals to offer support and information on Syncope and Reflex Anoxic Seizures”

THE BLACKOUTS CHECKLIST

Working together with individuals, families and medical professionals to offer support and information on Syncope and Reflex anoxic Seizures

www.stars.org.uk www.stars.org.uk

endorsed by

The Heart Rhythm Charity

Affiliated to Arrhythmia Alliance www.heartrhythmcharity.org.uk

Syncope Trust and Reflex Anoxic Seizures (STARS)

Be able to access all STARS literature to download whenever required

INFORMATION AND RESOURCE BOOKLET

Have access to back copies of the STARS newsletters and e-bulletins Have the facility to submit a question to ‘Ask the Experts’ Qualify for a discounted entry to the annual Patients’ Day which is held

Sycnope Reflex Anoxic Seizures and Vasovagal Syncope “Working together with individuals, families and medical professionals to offer support and information on Syncope and Reflex Anoxic Seizures”

SAMPLE SCHOOL POLICY

during Heart Rhythm Congress. Full rate is £50; subsidised rate for STARS subscribers is £25 “Working together with individuals, families and medical professionals to offer support and information on Syncope and Reflex Anoxic Seizures”

www.stars.org.uk

Be able to join the STARS syncope message board. There is a

“Working together with individuals, families and medical professionals to offer support and information on Syncope and Reflex Anoxic Seizures”

www.education.stars.org.uk

moderated youth message board for our younger members

Many of our subscribers have been members of STARS for a long time and over the years, through attending our annual Patients’ Days, friendships have blossomed. STARS provides information and support to sufferers throughout the world and our STARS Medical Advisory Committee includes world experts in syncope, RAS and POTS. The greater our membership, the bigger the voice we will have to ensure that in the future all GPs, A & E Departments, Paediatricians, Cardiologists, Neurologists and Medical Schools will recognise RAS, Reflex Syncope and POTS and help to avoid future misdiagnoses.

Please join STARS as a subscriber today! You can subscribe online at www.stars.org.uk or by completing our subscription form on the opposite page...

STARS RAFFLE

★

STARS is pleased to announce the winners of the raffle which featured in the last newsletter. The lucky winners are as follows:

1st Prize of £100 – Carole Evans 2nd Prize of £75 – Louise Bishop-Turrell 3rd Prize of £50 – Scott Thomson

Thank you to everyone who took part in the raffle, without your support we wouldn’t be able to continue providing information and advice or promote awareness of syncope and reflex anoxic seizures. WORD SEARCH ANSWER: CAMPING

01789 450564

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info@stars.org.uk

SUBSCRIPTIONS AND DONATIONS Your subscriptions are what keep STARS up and running. Please renew your 2009 subscription Subscriptions are a minimum of £15/$25/€25 a year. It is vitally important that you remember to renew your subscription. Without your help, we would not be able to provide our essential service to the families of RAS and Syncope sufferers. Thank you. You can type on this form and email it back to jenni@stars.org.uk, or print, complete & post it back. Name: Address: Post Code: Telephone: Email:

SUBSCRIBE & DONATE

£/$/€

I would like to make a donation to STARS and enclose: I have made a donation to STARS via PAYPAL at www.stars.org.uk to the sum of: I have made a donation to STARS via my CAF account to the sum of: (Please ﬁll in and email back to us for identiﬁcation purposes) I would like to RENEW my subscription to STARS and enclose (min of £15/$25/€25) I have renewed my subscription via PAYPAL at www.stars.org.uk to the sum of: I have arranged a monthly standing order from my Bank / Building Society Account to STARS (min. £2);

(state amount)

I have arranged an annual standing order from my Bank / Building Society Account to STARS (min £15);

(state amount)

Please tick the space if you agree to gift aid your subscription/donation. (Further info on next page)

Tick Here:

GIFT AID DECLARATION

STANDING ORDER AUTHORITY

Name of taxpayer: _________________________

My Bank

Address: ________________________________

Bank Address:

________________________________________ __________________ Postcode: ____________ Please tick to allow STARS to claim an extra 28p for every £1 you donate, at no cost to you. I want STARS to treat all donations I have made since 6 April 2000, and all donations I make from the date of this declaration until I notify you otherwise, as Gift Aid donations. I currently pay an amount of income tax and/or capital gains tax at least equal to the tax that STARS reclaims on my donations in the tax year (currently 28p for each £). I may cancel this declaration at any time by notifying STARS. I will notify STARS if I change my name or address. Please note full details of Gift Aid tax relief are available from your local tax ofﬁce in leaﬂet IR 65. If you pay tax at the higher rate you can claim further tax relief in your Self-Assessment tax return. Return to STARS, PO Box 175, Stratford Upon Avon, Warwickshire, CV37 8YD

PLEASE PAY: STARS, Account: 02423406, Sort Code: 30-98-26 Lloyds TSB Plc, 22 Bridge Street, Stratford-Upon-Avon, CV37 6AG The sum of: £/€/$ On (First Date) And after this, every

/ Month / Year

2009 ( delete)

My Account Number: My Sort Code

My Signature Date

rsmith@stars-us.org Please print and ﬁll out this form and hand to your bank or building society. Thank you

STARS Patients’ Day 2009 Registration Form Sunday 18th October 2009, 10.30am - 3.30pm at Hilton Birmingham Metropole (by NEC) A rare opportunity to participate in presentations by the UK’s leading medical specialists and listen to STARS patients talking about their experiences. There will be a chance during lunch to speak with medical professionals and STARS members, and visit the Patient Day exhibition.

The day will include:

Why are there so few POTS specialists in the UK?

Reflex Syncope/Neurocardiogenic Syncope/ Neurally Mediated Syncope/POTS What is the Difference?

Cognitive Behaviour Therapy for Syncope and POTS sufferers

Syncope in the Young (RAS)

Debate: A child experiences a blackout: should they be seen by a neurologist before a cardiologist?

Syncope in the Elderly

Counter-Manoeuvres for Syncope and POTS (DVD - Proving the benefits of these exercises)

Treatment Options: Drugs/Lifestyle/Pacemakers

STARS – The future

My Journey to a Diagnosis – A Patient’s Experience

Ask the Experts

A full day meeting with refreshments and lunch. This year, STARS is able to offer subsidised rates of £25 per delegate to all STARS subscribers and their carers registering directly through STARS – a discount of 50%. Cost to non-subscribers £50.00 pp. Personal Details

Please tick in the box whether you are:

Full Name:

Subscriber

Non-Subscriber

Address:

Patient

Town:

Carer / Friend

County:

Please record the name of each person attending with you:

Postcode: Dietary Requirements Please let us know if you have any specific requirements or allergies.

Telephone: Email:

I enclose a cheque payable to STARS for £

/ I enclose a postal order for £

Please send completed registration form to: Jenni Cozon, STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD Tel: +44 (0) 1789 450 564 01789 450564

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info@stars.org.uk