e Th uts o k c Bla rust T
JANUARY 2011: ISSUE 34
WORKING TOGETHER WITH INDIVIDUALS, FAMILIES AND MEDICAL PROFESSIONALS TO OFFER SUPPORT AND INFORMATION ON SYNCOPE AND REFLEX ANOXIC SEIZURES
STARS COMES OF AGE E
ighteen years ago a young mother with her three year old daughter was visiting paediatrician after paediatrician in her desperate search to find a cause for her daughter blacking out for no apparent reason, except these incidents seemed to accompany pain. The mother was Trudie Lobban, Founder and CEO of STARS and the child was her daughter, Francesca, who is a volunteer for the Syncope message board. After a stressful and timely search, Trudie eventually found a doctor who realised that not every blackout was epileptic. That historic meeting with Professor John Stephenson, a
NEWS ALERT Confirmation has just been received that Beverly Karabin, Associate Professor College of Nursing, a colleague of Dr Blair Grubb at his Autonomic Disorders Clinic in Toledo, will attend this year’s STARS Patients Day on Sunday 2 October. Beverly is hugely respected in America for the work she does with Dr Grubb and she is often named as co-author on the many papers he writes on POTS and Syncope. We look forward to welcoming her and I hope that as many of you as possible will try to join us on the day. Do not miss this opportunity!
Consultant Paediatric Neurologist at Yorkhill Children’s Hospital in Glasgow, was to have a profound effect on Trudie’s life and the lives of the thousands of children misdiagnosed with epilepsy over the years.
“Trudie, would you start up a small support group to help other patients and their families?” asked Professor Stephenson when Trudie, in appreciation of finding a diagnosis, enquired if there was anything she could do for him. And the rest is history!
Consciousness (TLoC) Guidelines 2010 were launched.
STARS has gone from strength to strength since that day in March 1993. By establishing the first ever multi-disciplinary medical advisory committee in 2000, Trudie brought together the expertise of international medical professionals to advise and support STARS. This was followed by the launch of the first Rapid Access Transient Loss of Consciousness Clinic in Manchester during 2007, the brainchild of Dr Adam Fitzpatrick, STARS Patron, to assist the rapid and accurate diagnosis of patients with unexplained periods of unconsciousness. Trudie was awarded an MBE in June 2009 in recognition of her work for STARS and services to healthcare.
Today, STARS is an international charitable organisation.
Last year, STARS produced the award-winning Blackout Checklist and in response to a request from the STARS Medical Advisory Committee, NICE Transient Loss of
Trudie Lobban, Founder & CEO of STARS and Prof John Stephenson, Consultant Paediatric Neurologist
STARS is now truly global with chapters in USA and Europe. Information resources for patients and professionals include booklets, information sheets, Blackout Checklist, STARS CD toolkit, Educational Syncope DVD, information specifically for older patients and illustrated booklets for the younger members.
Besides her work for STARS, Trudie is also the founder of the Arrhythmia Alliance and it was at Westminster in December last year when the Alliance was promoting their Know your Pulse campaign, that this photograph was taken, reminding many of the medical professionals present that without Prof Stephenson and Trudie meeting 18 years ago, it is unlikely that there would be an Arrhythmia Alliance today.
Happy 18th Birthday, STARS!
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
STARS Patients Day 2010 of a multi-disciplinary assessment of falls in the elderly, to ensure syncope is diagnosed and treated to prevent further falls.
Dr Adam Fitzpatrick, Dr Blair Grubb, Dr Eliz Brierley, Dr Valeria Iodice, Miss Catherine Best, Dr William Whitehouse & Dr David Low
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ver 100 STARS members converged on the Hilton Birmingham Metropole on Sunday 3 October 2010. The mood was one of hope and expectancy as speaker after speaker came to the podium. Every speaker was applauded as they shared new information and ideas on managing syncope.
within the control of the child but RAS is beyond the control of the child.
What did you miss? A three-strong team from Prof Mathias’ Autonomic Clinic in London provided an insight into what patients can expect when they get their long awaited appointment. Dr Valeria Iodice was first to speak on POTS and Syncope, explaining the tests they use at the Autonomic Clinic before making a diagnosis. Catherine Best, the specialist nurse for the Clinic, spoke of her innovative ‘recipe’ for treatment of these distressing conditions, and then Dr David Low presented on Clinical Research Aspects, outlining how the research programme is run and giving much hope to our members for a future when POTS will be better understood and more widely recognised.
Dr Eliz Brierley, a consultant in Elderly Medicine from Yorkshire, highlighted that so often syncope is misdiagnosed as a mechanical fall, such as a slip or a trip and that the real cause of the fall, a blackout, is too often missed. Dr Brierley stressed the importance
A patient, Lesley Kavi, explained how she, a POTS sufferer, managed her day and drew a gasp from the audience when she revealed that she was a GP within a busy practice. (Dr Kavi’s article, ‘You are what you eat and drink’, can be found in the centre pages of this newsletter.)
Dr Adam Fitzpatrick addressed that thorny problem of driving licences and syncope. He stressed that every patient must be assessed individually as to whether the DVLA should be informed when an individual is given a diagnosis of syncope.
Nancy Flavell, Caroline Salinger, Anita Kiernan & Julie Cowley
Dr William Whitehouse had mothers taking notes as he compared breath holding with RAS. As always, he was very informative and most importantly, reassuring. An important fact to remember is that breath holding is 01789 450564
Dr Christine Baker highlighted the often forgotten psychological effects of syncope, emphasising that any long term clinical condition will impact on a patient psychologically as well as physically. However, she stressed there is help out there and no-one must feel alone. Dr Baker is the author of the STARS information sheet on Cognitive Behaviour Therapy for Syncope. In a slightly lighter vein, Dr Stephen Murray talked about hypnotherapy and syncope and one or two from the audience volunteered to be hypnotised!
Amanda Palmer
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An ulterior motive drew me to Birmingham….
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Dr Blair Grubb, Professor of Medicine & Paediatrics, presenting on ‘The Fainting Phenomenon’
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here was standing room only when Dr Blair Grubb began to talk. With great excitement, we all listened to the world authority on syncope actually speaking at our STARS Patients Day! Dr Grubb spoke for over an hour, recognising how disabling POTS can be, sharing his extensive knowledge, and demonstrating the compassion for which he is renowned. Everyone was spellbound and the only noise was the applause when he addressed a particularly sensitive concern. Time was running out so only a few questions could be answered. However, true to his reputation as a caring doctor, he held a mini clinic for those who were prepared to wait. So many went away, reassured that someone cared and the future was bright. If you are already kicking yourself for not being there, Dr Blair’s Associate, Beverly Karabin, at his Autonomic Disorders Clinic in Toledo, has accepted our invitation to speak at this year’s Patient Day on 3 October to share her extensive knowledge and experience of this condition and the treatment used at their clinic. To register your interest for this year’s Patients Day on Sunday 2nd October 2011, please email: info@stars.org.uk 01789 450564
have to confess that I had an ulterior motive in attending Patients Day. I was awaiting the replacement of my pacemaker and I had so many questions that needed answering before deciding on a suitable alternative. And what better place to get an unbiased opinion than STARS annual Patient Day! Despite having had Malignant Vasovagal Syncope since 1995 and having been a member of STARS for a few years, this was also to be my first ‘Patients Day’. It was everything I had hoped for and more. It’s nice to be able to chat to someone and say “I had a ‘grey out’ or ‘pacer burn’” or any one of what to us are normal sayings but to others just strange words! I was surprised at how many of us there were, and saddened to see how many have had their lives totally changed. It was professionally managed and the amount of preparing and thought must have been very time consuming. The information on hand was extensive. When I think back to when I was first diagnosed, there was so little information out there; I was lucky my consultant was wonderful, she did not speak down to me, and explained as much as possible. In the mid 90’s, if you googled vasovagal you might only have 2-3 hits, now look at what there is available. Patients Day brings so much of that information alive and to us. To listen to a cross section of expert doctors describing our illness is also comforting in a strange way because it reminds me that we are not mad. To hear new ways of treating or controlling our illness means people have not given up on us. The quality of knowledge from all the speakers was excellent. Even after 15 years I heard new theories and www.stars.org.uk
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‘Rose between two thorns’ Lin & David Warner, Caroline Salinger
new ideas, all of which helped me understand a bit more of what is going on and perhaps why. Dr Blair Grubb was a huge bonus many of my American friends who had consulted him all spoke so highly of his humour, his understanding, and his knowledge. Before Patients Day, we were all invited to send in questions for the panel of experts to answer. I was one of the lucky ones, my question was chosen and with Dr Blair’s endorsement of my preferred choice, I have now been able to convince my local hospital to implant it! His talk was informative and he presented it with humour and in such a way that even those like me with no medical knowledge could understand the basics. My wife who has lived with this through me since my diagnosis also enjoyed the day. It helped her talking to other carers and comparing notes, and both of us enjoyed being able to put faces to names. It was a big treat to meet Trudie, Jenni and the rest of the STARS team who all worked so hard to make the day enjoyable and well organised. Just as a postscript, in October I had my pacemaker check, and it was confirmed that I would have my chosen implant in December and part of the case of convincing the hospital to go ahead was information some of their staff had received at the Heart Rhythm Congress 2010. I look forward to going again this year and hope to meet some of you there!
David Warner Lincolnshire info@stars.org.uk
Breakthrough year for STARS: Launch of First NICE Transient Loss of Consciousness Guidelines
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TARS welcomed the first ever Guidelines on Transient Loss of Consciousness (Blackouts) from the National Institute for Health and Clinical Excellence (NICE) on 25th August 2010. The guidelines were launched following the charity’s request to provide guidelines which will dramatically improve the diagnosis and treatment for thousands of people suffering from unexplained loss of consciousness. Until now, diagnosis has been a challenge for the 120,000 patients each year who experience Transient Loss of Consciousness (TLoC) in the UK. Professor Richard Sutton, from Imperial College Healthcare NHS Trust says, “Blackouts can be a symptom of a hidden killer. These new Guidelines will ensure that patients are properly assessed and all potential causes of their blackouts are examined. We believe this will speed up and improve diagnosis of TLoC (Transient Loss of Consciousness) and save lives.”
lose consciousness (I had learned to spot the signs by now and sit or lie down), but I did have pain in my left arm which was very frightening, and was unable to get out of the chair. This episode went on and off all evening. As a result of my arm pain my doctor referred me to see a cardiologist who completed a 24 hour heart rate monitor. I was diagnosed almost immediately with Vasovagal Syncope. I have since learned that my Grandmother also suffered from this condition. Quick reference guide
Issue date: Augu st 2010
Transient loss of consciousnes
NICE clinical guideline 109 Developed by the National Clinical Guidel ine Centre
Following a diagnosis I was able to finally learn what was causing my blackouts and how to prevent them. My cardiologist advised me to eat more salt, never get dehydrated, keep my blood sugar up, and get enough sleep. Since I did not use salt at all in my cooking, and sometimes forget to drink, and even miss lunch, this was very good advice. He also told me how to fight an attack while seated by using counter pressure manoeuvres if I was not able to lie down.
STARS member Wendy shares her story, indicative of many thousands of patients in the healthcare system misdiagnosed or undiagnosed and without the appropriate support and treatment for blackouts.
Since my diagnosis four years ago I have not experienced a single episode that has been more than a slight feeling of light-headedness. Without the correct diagnosis I would still Wendy Kirkham be having regular syncopal episodes.” Wendy Kirkham, Middlesex “When I was young I experienced blackouts that resulted in loss of consciousness, and Wendy’s story highlights the need to these continued through my teens and into improve the diagnosis and management adulthood. My blackouts were few and far of blackouts in the UK. Following these between and so no action was ever taken. Guidelines, health professionals will be better able to accurately and quickly A few years ago I suffered several episodes diagnose the cause of a blackout and in a small space of time and was sent to a should go some way to reducing the neurologist because my son had witnessed 39% of children and 30% of adults what I now know was an anoxic seizure. misdiagnosed with epilepsy each My GP thought I had suffered an epileptic year in the UK. In line with the new fit.The neurologist talked to me and said he recommended care, STARS has launched did not think it was epilepsy, but ordered a a new Blackouts Checklist – MRI scan. Nearly a year later I had another available free to download from: spate of episodes, where I did not actually www.stars.org.uk. 01789 450564
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Transient loss of consciousne in adults and ss (‘blackouts’) young peopl management e
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To view NICE TLoC Guidelines visit http://guidance. nice.org.uk/CG109/ NiceGuidance/pdf/ English
Key points from NICE TLoC Guidelines The clinical guideline hopes to address the huge variation in clinical practice across the NHS, regarding what healthcare professionals should do when they are first presented with people who may have experienced blackouts, as well as when they should consider referring them to specialists for further investigation. NICE advises healthcare professionals to establish the specific circumstances that occurred before, during and after the suspected blackout, either directly from the person, or from any witnesses. The patient’s medical history and vital signs should be recorded. NICE guideline calls for all healthcare professionals carrying out the initial assessment to assume the symptom is serious until proven otherwise. There are lots of possible causes for transient loss of consciousness and so a standardised, clinical pathway is crucial. info@stars.org.uk
STARS hosts Blackout Steering Group Meeting
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n Friday 24th September, STARS hosted the first Blackout Steering Group Meeting to discuss the establishment and roll out of Rapid Access Blackout Clinics across the UK. The focus group, chaired by Dr Adam Fitzpatrick, Consultant Cardiologist and pioneer of the Rapid Access Clinic brought together syncope specialists, patient group representatives, technology and allied professionals to work together for the future organisation of syncope services.
Trudie Lobban on the history of STARS and recent launch of the NICE TLoC guidelines
Trudie Lobban opened the meeting presenting on the history of STARS and the recent launch of the NICE TLoC guidelines. Mrs Lobban explained how the guidelines fall directly in line with the Steering Group initiative to ensure swift and accurate diagnosis of blackouts so patients are not undergoing unnecessary or repeated investigations before receiving a correct diagnosis. Dr Edward Rowland, Consultant Cardiologist at the Heart Hospital presented on the challenge of making the right diagnosis and providing the right treatment to patients with TLoC in the UK. Dr Rowland outlined solutions to the challenge: ensure healthcare professionals at the first point of care are aware of NICE TLoC guidelines, improve care pathways and integrate care across primary, secondary and 01789 450564
tertiary levels in the NHS. Dr Nick Gall, Consultant Cardiologist at the King’s College London then discussed how device implant rates varied across the UK, and reported that the UK holds some of the lowest implant rates compared to Europe and America. Dr Gall concluded that the major reason for the lack of referral and therefore low implant rates was the failure of medical professionals to recognise symptoms in patients. As chair of the meeting Dr Fitzpatrick addressed the challenge faced by TLoC with the solution of establishing Rapid Access Blackout Clinics in the UK, following the success of the first clinic set up at the Manchester Heart Hospital in 2007. Dr Fitzpatrick advocated that the results from the Manchester Rapid Access Blackout Triage Clinic (RABTC) which is run by a multidisciplinary nurse led team from cardiology, neurology and falls, show that the triage tool works. At the RABTC, the team work together to give all patients referred to the clinic a basic thorough evaluation, so a serious heart condition can be ruled out and appropriate follow up or specialist treatment provided. The RABTC clinical assessment is delivered by a webbased, custom-developed, computer assessment tool ensuring that it is easy to deliver a high-quality assessment to all patients. Results from 613 patients show that the RABTC system promotes swift and accurate diagnosis of blackouts and is also cost effective to the healthcare system. Dr Fitzpatrick championed the Manchester RABTC to the focus group as a model which should be applied nationally, working as a triage centre for more expert advice.
Dr Adam Fitzpatrick on ‘Establishing Rapid Access Blackout Clinics’
‘Managing Patients with Blackouts’ Care Pathway
Over the next six months the Steering Group will be working towards the development of 11 pilot Rapid Access Blackout Clinics across the country prior to these clinics, it is hoped, developing across the UK. STARS is proud to be working alongside the UK’s leading syncope experts on this initiative to improve syncope services and therefore the quality of care and treatment for patients with syncope. Next update - Summer 2011.
Dr Edward Rowland presented on the challenge of making the right diagnosis and providing the right treatment to patients.
For more information on set up and management of a Rapid Access Blackout Clinic for medical professionals visit: http://www.starstloc.org/
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Syncope information and support: A priority for the elderly in care homes
Summary extract from the ‘Syncope in care home residents’ resource: Top tips for reducing the risk of syncope caused by low blood pressure in your care home:
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ne of the major concerns with fainting is the potential injury that may be sustained during a fall which is often caused by a faint. There are many risk factors causing falls in older people. External causes, such as badly fitting slippers cause 50% of falls in older people. Orthostatic intolerance is one of the major causes for the other 50% of falls. Up to half of the residents of nursing homes fall each year, and as many as 40% of them fall more than once.1
1. Ensure every resident has a good fluid intake Are your residents managing three pints (six full beakers) of fluid a day? If not, encourage residents to drink one extra beaker first thing and if possible an extra beaker late morning. Warning: If a resident has heart failure or they are taking diuretics (water tablets) and there is a good reason that they are not drinking extra water, ask your resident to talk to their own doctor first. 2. Simple preventative actions If residents have been sitting for long periods of time, encourage them to cross and uncross their legs before standing. 3. Encourage exercise Encouraging residents to stay active is really important. Gentle exercise such as walking will help the veins to return blood from the lower body. 4. Avoid large quantities of carbohydrates Offer small meals often and avoid meals with large quantities of carbohydrates (bread, pasta, pastry). Low blood pressure can occur after meals when the circulation is needed to assist digestion, which can lead to a drop in blood pressure when standing up.
Dr Eliz Brierley, Consultant Care of the Elderly, presenting on ‘Syncope & Falls in the Elderly’ STARS Patients Day 2010
Working alongside care homes and with guidance from Dr Eliz Brierley, STARS seeks to address the number of falls caused by faints in care homes and is pleased to announce the launch of the ‘Syncope in care home residents’ information resource. The resource is designed to provide information and support to staff looking after elderly residents prone to syncope (fainting).The resource contains advice for care home staff on what to do in the event of a resident experiencing a syncopal episode and information on long term preventative measures.
5. Ensure every resident regularly receives a review of their medications Once prescribed, medications should be reviewed at least once a year to ensure they are not the cause of the problems. 6. Ensure that a resident’s blood pressure is assessed lying and standing over a three minute period after an unexplained fall or blackout
1 Grubb BP, McMann MC, ‘Fainting in Older People’, Fainting Phenomenon, (Futura Publishing Company, Inc, Armonk, New York, 2001) 80.
In December, STARS was proud to receive recognition from the British Geriatric Society (BGS) who gave their endorsement of the STARS care home resource. BGS is a professional association of doctors practising geriatric medicine, with a particular interest in the medical care of older people and in promoting better health in old age. This year, STARS will be going forward into care homes to provide education, support and information on the management of syncope to staff, to improve the care and treatment of elderly residents prone to fainting. It is hoped that the Syncope in care home resource will go some way to reduce the number of falls caused by faints and improve the quality of life and care of older people in care. Faints and falls should never be considered a normal part of ageing, it must be recognised that most faints in older people can be treated. 01789 450564
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A life of faints
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e had been chatting and John stopped talking and leaned on a desk. I touched him gently and to my horror he fell to the floor unconscious. This was the start of what was going to be a long frightening journey of fighting, what we came to call “John’s attacks”.
none of how severe the attacks are or events after (which is why I am writing this). A major concern was that as the years passed the attacks became more severe. Initially faints of a couple of minutes, they increased steadily to incontinence, longer
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John & Anne in Canada 2010 - Only possible due to STARS
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John would have had over ten attacks without the pacemaker but he has been absolutely fine.
The fainting had started in adolescence, with a very public collapse at the altar rail in church. John was thirteen. Initially put down as “one of those things”, odd faints happened on a rare basis and were unconsciousness and then fits. Recovery ignored. time became longer and triggers became easier. We worked hard to eliminate as The next attack happened on a holiday many as possible but how do you avoid to France and gave the first clue to illness and accidents? Holidays abroad triggers. John fell over and banged his hip became impossible after a major event and a few moments later was out cold. in Mexico where we had the cliché event A long complicated series of events led of a friend shouting in the restaurant “Is us to being accused of smuggling people there a doctor here?” There was, no less out of the country! A mess sorted out than a heart specialist! He advised us to fairly efficiently but still concerning on get medical advice as he considered this top of the stress of the faints. to be no ordinary faint. We are grateful to him as this gave us the confidence to do something.
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The major problem was that John had no warning of when he was about to faint...
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After a trip to the doctors we were told that nothing could be done, it was just one of those things. John was advised to live with it. So we did, for some twenty years.We identified the triggers, any bang or blow, cuts, wounds, cramp, stomach upsets, fever, illness, dehydration and any alcohol. I woke several times with John fitting across the bed. One of our children was born without John there as he fainted due to dehydration cutting his head badly. There were several near misses when he could have been badly injured. The major problem was that John had no warning of when he was about to faint and therefore could not take any preventative action. He also has little memory of what happens before, 01789 450564
Eventually a referral to the local hospital and a tilt test. Nothing happened as this was not one of John’s triggers. Medical interest was lost. “Live with it.” So we did for another grinding few years. Attacks grew worse. John did not come home one night. Hours later I got a phone call from a London Hospital, can I come up, they have John and cannot bring him round. He was being treated for a heart attack and was therefore being sat up. After lying him down he began to come round. So we got a medical bracelet.
Finally I found STARS. What a difference finding that we were not alone and that there was support out there. A particularly bad attack where John stopped breathing and, for the first time, I called an ambulance made me desperate. Using STARS help and advice we finally managed to get to a specialist unit where they were prepared to use drugs to trigger an attack. They got a major ’event’ and the required data. At last the medical authorities admitted a problem as John’s heart stopped. A few weeks later he had a state of the art pacemaker fitted. Naturally he fainted on the table as they did it but they had the wires in and so could pace him. That has been the last attack. Life has been so much better. We have the confidence to go on holiday again and do loads of things. We calculate that John would have had over ten attacks without the pacemaker but he has been absolutely fine. Our lives are now normal.
If you are struggling like we were, persevere. Keep knocking at the doors and persist. Things can now be done More investigations. More tilt tests. to help. I cannot express how grateful Checks for epilepsy. All negative. I was we both are to STARS. Their help and getting increasingly desperate as the support has put us where we are now. attacks were getting worse and worse. Thank you so much. We discovered John’s grandfather had died mysteriously of a heart problem in Anne Parsons the woods, all alone.We were doing less Bedfordshire and less as the constant fear of being somewhere away from medical help increased. www.stars.org.uk
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You are what you eat and drink
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lood pressure and pulse rate can be influenced by what we consume. These changes can be quite dramatic in a patient with POTS or some types of vasovagal syncope. This can work to the advantage or disadvantage of the patient.
FLUIDS It has long been recognised that people who are dehydrated are prone to fainting. When fluid intake is insufficient, or fluid loss is excessive, the volume of blood circulating in blood vessels becomes reduced and blood pressure falls. An average healthy adult requires approximately 1.5 litres of fluid per day when exercising or in a hot environment, considerably more may be needed. Patients with POTS are often alcohol intolerant – one glass can feel like two! Patient with POTS are often hypovolaemic. This means that their SPORTS DRINKS blood volume is reduced in relation to the capacity of their blood vessels. Blood Some patients find it useful to drink has a tendency to pool (collect) in hands, pre-packaged sports re-hydration drinks feet and abdominal (splanchnic) blood containing electrolytes and glucose when vessels. Increased fluid intake can boost they are at risk of developing symptoms. blood volume and improve symptoms. Alternatively, powders and tablets may Patients with vasovagal syncope often be purchased from sports shops and also pool blood. Fluid intake of 2-2.5 websites – these are dissolved in water. litres per day is generally recommended - more on a hot day. If exercising, it is RAPID WATER DRINKING probably best to boost your fluid intake even before you start. Interestingly, in patients whose autonomic nervous system does not MONITORING work properly, blood pressure can increase when drinking water - before You may find it helpful to drink from the water leaves the stomach to enter a refilled sports bottle - this allows the blood stream! This is called the you to keep track of how much you ‘pressor effect’ and is thought be have consumed as it is very easy to triggered by stomach nerves sensing underestimate when you are busy. that the stomach has been stretched Younger patients are often advised to and triggering the sympathetic nervous drink sufficient fluids so that their urine system to raise blood pressure. If two is clear (i.e. not yellow in colour). glasses of water are swallowed rapidly, the effect will start in 3-5 minutes and ALCOHOL may relieve symptoms of vasovagal syncope. In POTS, heart rate has been It is important to avoid excess alcohol shown to drop. consumption as alcohol dilates blood vessels and can lower blood pressure. 01789 450564
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CAFFEINE Caffeine ingestion has been shown to produce a small rise in blood pressure. This may be of some use in patients with low blood pressure and syncope. However, it can also result in tachycardia (fast heart rate) and palpitations. It may encourage fluid loss. Patients appear to have mixed experiences with caffeine some find it helpful and some feel worse. Caffeine is found in coffee, tea, cola, IrnBru and even chocolate. Experiment!
FOOD SALT Patients with a tendency to low blood pressure and syncope are often advised to increase their salt intake. Patients with POTS (except hyperadrenergic POTS) may also benefit. Always ask your health care professional e.g. doctor if this is advisable. Recommendation regarding quantity varies enormously, ranging from 3-20g per day for adults (There are 6g of salt in a level teaspoon) More medical research is needed on this topic to determine how much salt is beneficial to each patient. info@stars.org.uk
tend to be low, eat food containing potassium e.g. bananas, avocados, dates, beans and lentils, spinach, mushrooms, melon and dried fruits. If potassium levels are very low, medication may be recommended. WHEN TO EAT
Some patients eat salty food such as crisps, salted nuts, bacon, sausages, feta cheese, marinated olives, Marmite, instant noodles and packaged soups. Fast foods are often salty, but they also contain unhealthy fats and should be limited. It may be helpful to keep a little tub of salt in the car or your handbag – or ‘acquire’ tiny sachets from fast food outlets. Salt tablets can be useful, although they can cause nausea, as salt can irritate the stomach lining. In the UK, Slow Sodium is available to buy and on prescription. It has a wax coating which delays salt release until the tablet is in the small intestine, thus reducing nausea. Each tablet contains 600mg - 10 tablets are equivalent to a teaspoon of salt. Again, medical advice should be sought before use. It may be helpful to combine both table salt and salt tablets. Take slow sodium with a high fibre cereal in the morning and in situations when it is difficult to add salt to food e.g. when travelling, and add table salt to food at other times. Some medications used in POTS and vasovagal syncope (e.g. Fludrocortisone) may not work unless the fluid and salt intake is sufficiently high.
syncope experience deterioration in their symptoms after meals. This is because blood is diverted to the splanchnic blood vessels which supply the organs in the abdomen in an effort to digest food. Meals rich in unrefined carbohydrate (e.g. sugars and white flour) exacerbate this problem. It is best to eat ‘low GI foods’. This means that the food is digested more slowly and does not therefore produce rapid peaks in blood sugar levels. It is often lower in carbohydrate and higher in fibre content. Examples include: bran or oat breakfast cereal, nuts, yoghurts, beans, fruit and veg, brown rice and pasta and wholegrain bread. FIBRE It is important to avoid constipation in vasovagal syncope. Straining can induce fainting in susceptible patients. Eat high fibre foods such as bran cereal, fresh and dried fruits, vegetables, beans and lentils, wholemeal bread, brown rice and pasta. Read the food label. Plenty of fluids also help to prevent constipation. POTASSIUM
Many patients with POTS and vasovagal
Patients taking Fludrocortisone for POTS and vasovagal syncope are prone to losing potassium. This can be dangerous and potassium levels should be monitored by blood tests. If levels
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CARBOHYDRATES
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Many patients with POTs and vasovagal syncope find that their symptoms are worse if they eat large heavy meals or become hungry. It is best to eat little and often i.e. graze all day long. Reserve carbohydrates/high GI foods for evenings or times when you can lie down and rest afterwards. It can be useful to keep long-life, low GI food at work or in cars and handbags for those moments when you are caught out. Examples might be low fat flapjacks, oatcakes, nuts, malt loaf, some dried fruits and dark chocolate (over 70% cocoa solids). Try to keep your weight within normal limits (BMI 18.5 to 25). Low body weight can lower blood pressure and make you prone to fainting. Obesity will increase blood pressure, but has other cardiovascular disadvantages.
THIS ALL SEEMS VERY COMPLICATED! Life can feel very complicated when you have POTS or vasovagal syncope. You may have to attend lots of medical appointments, make adjustments at work or be unable to work, support family members who are also affected, keep your environment and clothing cool, monitor your posture, exercise regularly – and all this when you feel tired and unwell. Why should you also have to watch what you eat and drink? Actually, this is all about a healthy diet. With the exception of high salt intake, it’s what everyone should aspire to, whether they have autonomic problems or not. It’s healthy, it makes you feel better and it can be rewarding. Dr Lesley Kavi GP, Birmingham info@stars.org.uk
STARS Education STARS Education DVD
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id your child’s school worry when you told them he/she has RAS? Do you fret that school will not know what to do if they are faced with an attack? Are you always asked to go on school outings? If you have answered ‘yes’ to any of these questions, then your school should request our much-praised Education DVD. This is a perfect means to ensure that all the concerns that school may have are addressed, enabling a child to lead and enjoy a normal full school life – the right of every child.
Hannah Nicholson
Should all children with Syncope be given support to assist their education?
If your school is interested in obtaining this Education DVD, please ask them to email pippa@stars.org.uk
STARS New Publications
Hannah Nicholson, one of STARS’ loyal volunteers, chose to write her dissertation on the question of whether children with RAS/ Syncope should be afforded support to help with their education. Though struggling with syncope for many years and whilst at university, Hannah has gained a BA.Ed (Hons) and is looking forward to becoming a teacher.
We have two new publications which have been written with our younger members in mind. Jack has RAS This beautifully illustrated booklet tells the story of Jack who has RAS. It is ideal for parents to read with their child but also it will help siblings who struggle to understand what is happening to their brother or sister and worry it is all due to them. How my Heart Works An A4 fact sheet, this is written in simple language for primary school children, telling them how their heart works, explaining about their heart rate, and what can sometimes go wrong. Ideal for your child to take to school to share with their teacher!
Hannah’s dissertation can be read on our website: www.stars.org.uk/kids-and-teens/ young-people/advice-for-youngpeople
To request a free copy email jenni@stars.org.uk
ALERT CARDS
Well done, Hannah!
ORDER YOUR PACK NOW!
We receive more requests for our Alert Cards than any other STARS resource! Every child should carry a card and it is advisable that family and friends should also have one for reference. Anyone who is apprehensive when asked to look after a child with RAS or Syncope for a few hours feels reassured if they have something to refer to in case of an attack. Available in packs of 20, for either Syncope or RAS, just send your full name, address, the name of your condition and a one pound coin to Jenni Cozon at: STARS, PO Box 175, Stratford upon Avon, Warwickshire, CV37 8YD and the cards will be posted in return. 01789 450564
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RAS – Don’t let it rule your life As a child I did horse riding, swimming lessons, school trips, in fact everything a boy of my age should be allowed to do. I was in mainstream
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three As at A Level. While in my first term I unfortunately broke my hand and had to have my first operation. Having RAS worried me about whether it would affect my general anaesthetic.
...not wrap me up in cotton wool and to let me live as if I didn’t have the condition.
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y name is Oliver Bates and I have a condition called Reflex Anoxic Seizures or RAS for short. Following my first seizure at three months old and then again at eighteen months whilst in a play area, my mother first took me to see a doctor. I was tested for epilepsy but the doctors eventually decided that it was behavioral issues and that I was holding my breath. My mum knew this couldn’t possibly be true because I was far too lazy to do such a thing!
primary school with a statement and very happy, participating in sports and even attending school camp at the age of eleven. I sat the entrance exams for secondary school and got into one of the top schools in the country. There, I played full contact rugby for the school and in year eleven I swam for the school nationally coming third. At this point, my RAS attacks had become rare and only ever happened in extreme circumstances. This was not because I was being anymore careful but I was just growing out of them. Out of school I was swimming ten hours a week and travelled abroad several times with my From this point on I just lived with it, swimming club. I have travelled all over having at least three seizures every the world with my school too, visiting week with my parents having no idea Italy and Greece, spending time away what it was. At two and a half I was from home. taken into hospital for severe chicken pox and the consultant knew exactly After gaining good grades at GCSE what my seizures were and how to deal I entered sixth form and decided with them. This is when we first heard that I was going to give back to the of STARS. He referred us to this brand charity who had helped my parents new support group and my parents went so much when I was young. I became along to the very first meeting. They the Charities Captain for my house at found it a real comfort to know that school and coordinated many events there were other people they could talk to raise just under £1000 in a year for to who were going through the same STARS. During my last year, I also had an thing as they were. interview at Oxford University getting through the first stages from 2000 The approach they took was to not people to only 15. Unfortunately, I did wrap me up in cotton wool and to let not get in but I am thoroughly enjoying me live as if I didn’t have the condition. being at Exeter University after gaining
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As a child I did horse riding, swimming lessons, school trips, in fact everything a boy of my age should be allowed to do. 01789 450564
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It did not however and it was another experience under my belt. Even with this mild hiccough, I am enjoying university immensely and cannot wait to go back for my second term. In the Summer, I am going to South Africa to help in an orphanage and see the sights and I cannot wait. So, if I could give a message to anyone who is in the situation that my family and I were in over 17 years ago, it is that even though you have to live with RAS, don’t let it rule your life. Do everything you would normally do and don’t let it hold you back because it will only change your life if you let it. Oliver Bates Kent
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FUNDRAISING
Swimming and celebrating…all in the name of STARS
Last August, an indomitable pair, Denise Bell and her friend Trina Mitchell pulled off the amazing feat of swimming from Shoreham Harbour to Brighton Pier – a distance of over five and a half miles. Despite being August, the sea was very cold and choppy but they managed to complete the crossing in three hours. Fantastic! In October, to celebrate their success, Denise held a STARS charity evening at Rick’s Bar, Greenwich – is there no Mrs Margaret Atherton sent stopping this supermum?! Denise us a cheque for £100 on behalf was hoping to raise £1500 but in fact of the congregation at St Columba’s raised £2100! Church, Royal Air Force Kinloss, Scotland. Thank you everyone! Denise has three children, two of whom have been diagnosed with RAS. Thank you Denise and Trina! Thank you Broderick & Leslie, Chartered Certified Accountants of Doncaster for your £150 donation – they were promised an e-Christmas card designed for them to send to their clients IF they promised to make a charitable donation to STARS. Thank you Andrew Leslie! Warren and Jo Roberts, friends of Andrew, decided to forego birthday presents if their friends would donate to a charity instead. Guess who was one of the charities chosen?! We received a cheque for £335 – thank you very much Warren and Jo! The Hartley Morris Men dance for STARS Tony Tomlin from the Hartley Morris Men sent us £50 when they heard about STARS and the support we had given to a young boy called Harry. His big brother, Ashley, was enthralled by the dancing and was lucky enough to be given an impromptu lesson when they appeared at Beltring Hop Farm in Kent. Thank you ‘Morris Men’!
Philippa Palmer raised over £400 through abseiling, with her two daughters Hannah and Louise, down the maternity block of their local hospital which was nine floors high! They decided to do this as Ruth Pope, a friend of Hannah and Louise suffers with Syncope. Ruth’s mum, Brigid, helped by rallying sponsors. Wow, what a great total! Big thank you to everyone.
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“As I look back on 2010, I am
so encouraged by the support that has been given to us by our STARS members and their ambitious and enthusiastic fundraising endeavours. Thank you all very much and I hope that we can count on your support during 2011 because without you, STARS would not be what it is today. I look forward to supporting you and your fundraising activities during the year and hope to be able to meet some of you along the way! No doubt you will exceed our expectations and delight with more extraordinary events and stories! I wish you a healthy and prosperous 2011!”
Wendy Adams, Head of Fundraising
STARS Fundraising Raffle 2010 The winners: 1st Prize - £100 Susan Baker (Peterborough) 2nd Prize - £75 Mrs J P Carter 3rd Prize - £50 Thea Eastmead Congratulations to our winners and thank you ALL for supporting us this year – as with previous years, every penny counts if we are to continue with the current level of support we offer to our members.
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Licence to Thrill A night of James Bond glamour Donna Gardner-Hickman, mother of Chloe, organised a charity ball last Autumn, in aid of STARS. With a red carpet arrival, three course champagne dinner, casino, and entertainment from a Shirley Bassey tribute band, Shifnal was shaken and stirred by this night of glamour! Donna’s daughter, Chloe, spoke during the dinner about her experiences to help the guests understand more about STARS and what we do to support individuals. Following the great success of this event, she raised over £1000 for STARS, Donna has promised that she will organise another event for us. Thank you both very much.
Baking for STARS!! Anita Kiernan (her pregnancy diary on the STARS website is a must for any of you who are pregnant or thinking of trying for a baby) together with two colleagues from NHS Salford Commissioning Team, baked cakes and Indian snacks to sell at work. She raised £50 and her husband, Glen who was only allowed five muffins for his office, John Sisk Limited, added £10! They must have been delicious! Thank you so much, Anita.
Sally Hamilton-French and her horse groom, Emma, donated £60 to STARS. This is their fee for riding Rio, the beloved horse belonging to one of our long-standing members. Thank you Sally and Emma.
Welcome Lewis Robertson! Lewis is the adorable first baby of Karen and Chris Robertson. Karen has been a supporter of STARS for some time and we are always very happy to include a photograph of new arrivals. Congratulations Chris and Karen (who looks wonderful)!
A special thank you to Janet Oliver Bates, Charities Captain for Muchmore from Cornwall who Lewin House at The Judd School, held a coffee morning during Tonbridge last year chose STARS Thank you, Denise O’Callaghan, for Arrhythmia Awareness as his charity because he had doing a 15k walk in aid of STARS! Rather than Week in 2010 and sent us received support and advice asking for sponsors in this current economic climate, £80. What a successful from us. Various fundraising she popped our STARS donation tin in her local shop coffee morning it must events were held and we together with a STARS poster which explained what have been! Janet joined received a cheque for the she was doing and why. This is such a simple but STARS as her four year fantastic sum of £965.24. Wow! effective way to raise money and proved very old son, Vinnie, has been Thank you Oliver and everyone in successful for Denise and STARS! diagnosed with RAS. Lewin House for all your hard work and enthusiasm. 01789 450564
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My Fainting Wife!
Dr Thomas Fåhraeus, Electrophysiologist, with his wife
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f course my 43 year old wife was going to run. When an opportunity arises for her to struggle through a half marathon or something similar, my children and I can almost smell the rubber on her trainers as she takes them out of the cupboard ready to start her training. The famous bridge run was coming up. To celebrate the ten year jubilee of the bridge between Denmark and Sweden, runners have been invited to run the distance of 21 kilometres from Copenhagen to Malmoe in Sweden. But, first, some rigourous work-outs at the local gym are essential. She needs to be in pretty good shape when she is given her number at the start of the race! Some of her back muscles began to protest with all the strenuous lifting and
stretching. My wife seldom complains of pain but as a doctor I noticed some awkward back movements when she moved around at home. On examination, I found she was experiencing serious pains around the left shoulder and neck. I suspected some kind of myositis. ” No more training” was my verdict and I cancelled the bridge trip. Of course, she was not going to allow my advice to influence her plans!
relaxed doctor in the white coat on the wards. According to all the experts, I should be feeling the pulse now, I thought. And there it was, weak but her heart was beating! Eyes opened. ”Give me any painkiller you have!”she whispered. An hour later, after some strong painkillers and diazepam she was in good shape again. ”You can forget that bridge run” a convincing argument I thought.
The next evening after another workout at the gym the pains were worse (of course) and I tried to help her to bed. Suddenly she whispered “I am going to faint”. Her face was white.
Two days later, on a late Sunday afternoon, we were at the end of the bridge as she, amongst 27,000 competitors, crossed the finishing line on to Swedish soil. She was in pretty good shape all down to my medication I am sure (or perhaps her determination to run)!
During my 25 years of treating arrhythmias, I have seen perhaps a thousand patients fainting but now, I must admit, I started to worry a little. First rule: Feel the pulse! I could not find it. I laid her on the floor and shouted her name but with no response. Vasovagal syncope, due to the pain, I thought waiting for her pulse to return. The seconds felt like minutes. Did I start panicking? My 9- year old son, Kim, was in front of the TV, oblivious to what was happening. Not a good idea to frighten him too.
Thomas Fåhraeus Dr Thomas Fåhraeus is a leading Swedish Electrophysiologist who has made major contributions to arrhythmia services in Europe. He is a very good friend of STARS and is extremely supportive of STARS International and the work we do, advising on translations of our medical literature and raising awareness throughout Europe of our charity.
No pulse. Call an ambulance and start CPR? Chest compressions? I was confused. I didn’t have my usual selfconfidence and I was no longer the
The Gaze
Dedicated to my wife
Dr Blair Grubb, Professor of Medicine & Paediatrics
You go with the fragrance of the departing dark clinging softly to you. Even your eyes hold their silence. A clear wind blows gently through your hair multiplying the stillness with a single sound a whisper, barely heard enshrined in a veil of shadows. Turning to me your eyes tell it all. A gaze that reaches to my heart’s core. Suddenly memories and dreams leap from our looking taking me to the end of my silence finding again the love that began so long ago. Blair P. Grubb, MD
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Heart Rhythm Week 2011: ‘Putting Pulse into Practice’ to diagnose the cause of blackouts Promote pulse checks in your GP Practice
How can you get involved?
Heart Rhythm Week (formerly Arrhythmia Awareness Week) is a national event which gives anyone the opportunity to raise awareness and promote better understanding of heart rhythm disorders.
No matter how big or how small, your efforts will make a difference •
Arrhythmia Awareness Week 2010 was a huge success, with • over 2,500 activities across the country and 400+ supporters taking part. During the week-long event, STARS helped medical professionals around the country to perform more than 8,000 pulse checks in supermarkets, shopping malls, schools and medical centres. • Heart Rhythm Week 2011 will mark the eighth Awareness Week and will focus on ‘Putting Pulse into Practice’. The easiest way to detect an arrhythmia that may cause blackouts is to feel the pulse and this is why we want pulse checks to become part of a person’s natural health regime.
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Heart Rhythm Week 2011: What will the week involve? • • • • • • • •
‘Pass the Pulse’ – Order Pulse Check Guides to share with your friends, colleagues and family
Know Your Pulse Pulse Check Card
www.knowyourpulse.org
‘Put the Pulse into your Practice’ with our ‘Posters and Leaflets Pack’ ‘Pick up a Pulse’ - Hold a Pulse Check Session in your local supermarket, GP surgery, shopping centre or workplace. We can offer you Pulse Check Guides, Checklists, Posters, Referral Letters and more! ‘Take Action’ - Contact your MP and press to raise awareness locally and nationally. Use our template mailings! • ‘Make your voice heard’ Share your story with us. Without you we have no voice. Help us to inform the public about heart rhythm disorders
Collaborations with other organisations Parliamentary activity Media Medical engagement Build and publish evidence Distribution of literature Awareness-raising activities Fundraising and community events
We can support you with awareness displays and community events, distributing information materials to medical centres, and participating in fundraising, lobbying and media activities. There are many ways in which you can get involved and help to make pulse checks routine when you visit your GP surgery.
To ‘get involved’ contact: caroline@stars.org.uk To order your Awareness Pack(s) visit: www.heartrhythmweek.org
In December 2010 STARS supported the Arrhythmia Alliance “Know Your Pulse” Campaign Reception at the House of Commons. For a full report on the day event, please visit: http://www.stars.org.uk/news-events/events 01789 450564
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Prestigious award for STARS Patient Information In line with the new Transient Loss of Consciousness Guidelines, STARS launched a revised version of the Blackouts Checklist which was awarded a commended prize at the British Medical Association (BMA) Patient Information Awards in September 2010. The BMA Patient Information Award is part of the BMA medical book competition. It was established in 1997 to recognise quality in written patient information leaflets and small booklets. STARS is thrilled to have received this recognition for innovation and quality of the information provided to patients and professionals.
Pulse Check App Now available to download www.knowyourpulse.org
Email your MP
The Blackouts Checklist has been designed to help doctors work together with their patients to reach the correct diagnosis for any unexplained loss of consciousness. The Checklist gives information and advice on the major reasons for experiencing a blackout and helps patients prepare for a doctor or hospital appointment increasing their chances of being properly diagnosed and treated. Email info@stars.org.uk to order your copy.
Take two minutes to help us introduce pulse checks in the NHS. Email your MP to ask them to support the Know Your Pulse campaign.
VISIT
www.heartrhythmcharity.org.uk
Why not bring this to the attention of your doctor? Regional Cardiac Update Courses 2011 for medical professionals STARS in collaboration with Arrhythmia Alliance is proud to be continuing its series of cardiac update courses into 2011. Our aim is to increase awareness to healthcare professionals across the UK on the management of cardiac arrhythmias.
For more information, visit: www.stars.org.uk or by contacting STARS: events@stars.org.uk
Each course will provide a forum for primary and secondary healthcare professionals interested in: • • •
Syncope Management including the latest ESC guidelines Reviewing latest policy and clinical developments Assessing local services and how these may be enhanced
These meetings are aimed at all those involved in the care of, or providing a service to, patients with cardiac arrhythmias in general. Awarded Four CPD Points by the Royal College of Physicians.
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Venues Liverpool Birmingham Stoke-on-Trent Leicester Newcastle Oxford Belfast Carmarthen
Dates 24th March 2011 7th April 2011 28th April 2011 12th May 2011 19th May 2011 20th May 2011 Spring 2011 Spring 2011 info@stars.org.uk