Issue No: 39 October 2013
Take
to Heart ®
Providing information and support on Syncope, RAS and PoTS
Join us at
Patients Day 20 October 2013, The ICC, Birmingham
Why are doctors unfamiliar with PoTS?
Syncope and low blood pressure
Dr Kavi explains
Your FAQs answered
UrbanEdge architecture firm raise £5000 for STARS ©STARS 2013 Registered Charity No: 1084898
Free AliveCor iPhone heart monitor for patients Page 11
Message from Trudie Lobban MBE, Founder & CEO Continuing our year-long anniversary celebrations, in July STARS was honoured at Stratford Racecourse with a race ‘The STARS 20th Anniversary Handicap Hurdle’ to raise awareness of syncope. The event was a fantastic platform for the charity and was attended by 2,000 people.
Trudie Lobban, Stratford Racecourse Chairman Nick Lees and Jenni Cozon at Stratford Racecourse event
Our 20th anniversary year continues to be one of the most memorable in our history. Many congratulations to all of those individuals who took part in this year’s Heart Rhythm Week, 3-9 June, to raise awareness of syncope. You continue to fly the flag for STARS with a truly inspiring level of enthusiasm and dedication. As we continue to celebrate this important milestone, it has been fantastic to see more members than ever take up the challenge of raising awareness during Heart Rhythm Week. From awareness displays in medical centres, schools and community centres, to fundraising bake sales, mass pulse and ECG screening events, this year’s awareness week was unquestionably our most successful to date. Your hard work allows us to continue to offer the advice and support that we do. I would like to give a special mention to Jane Bateson who held a bake sale to raise funds for STARS; syncope nurse, Andrea Collins and her team who held an awareness display at the Royal Brompton Hospital; Jane McKay who secured an awareness stand at her local supermarket in Carnbrae and to Helen King and Hannah Clegg for sharing their stories during the week. I never cease to be amazed at the novel ways you continue to raise invaluable funds to allow us to continue our work. Please go to our fundraising pages to appreciate the time, hard work, sacrifice and pure energy that is given to raising funds for STARS throughout the year.
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This year has also been a landmark year for us outside the UK. In August I was privileged to be invited to attend the 61st annual scientific meeting of the Cardiac Society of Australia and New Zealand to share the work of STARS and our achievements. During my visit STARS generated a real buzz securing national media coverage in print and on the radio highlighting the important link between fainting and underlying heart rhythm disorders in Australia. Since my return we have seen many new enquiries from Australia, and I’m pleased to offer support and information to patients in other countries. Later this month I have been asked to speak at the First International Workshop on Syncope in Italy to help establish the risk stratification for syncope patients in emergency departments. Our work is indeed global! Finally, I look forward to meeting many of you at our annual Patients Day on Sunday 20th October in Birmingham. For those that have not attended before, the day is a unique opportunity for members to come together to listen to syncope, RAS and PoTS specialists and meet with other patients and carers going through similar experiences. This year we are fortunate to have a truly international faculty at Patients Day including specialists from the UK, USA, Canada and Denmark! Among the speakers we have world renowned dysautonomia specialist, Dr Blair Grubb; cardiologist, Dr Robert Sheldon, debating the value of tilt table testing and paediatric electrophysiologist, Dr Jan Till, explaining reflex anoxic seizures and other fainting spells in school age children. This is just a taster of the exciting agenda we have lined up for the day (please see the back page of the newsletter for further information). Best wishes
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‘Breath holding at two weeks old?’ As the turns were so frequent it wasn’t unusual for them to happen away from home, and on one occasion an episode happened whilst we were surrounded by friends. This was a turning point.
Robert, aged 21
Almost 20 years ago STARS received one of its first ever calls. It was from Jane Ranger, whose 18-month-old son Robert was suffering unexplained blackouts. She had seen STARS Founder, Trudie Lobban, on This Morning describing the symptoms of reflex anoxic seizures and straight away recognised them in Robert. Here Jane charts her journey from confusion and fear to finding an answer through STARS. My life changed when my first born, Robert, came into the world in August 1991. At two weeks of age, he was sweating profusely and as I lifted him from his pram, he exhaled, and went floppy in my arms. I just sat holding him, which was probably only for seconds, and he inhaled and started crying. I immediately phoned the health visitor who said it was breath holding, confirmed by her chat with the GP. Breath holding at two weeks old? During a typical seizure he would exhale, look glazed, and go grey, lips blue, and then become floppy, maybe dribbling or wetting himself. After a few moments, he would twitch just as we do in our sleep, then lift his head taking in a deep breath, and look around with a very dazed expression. Sometimes he would sleep but always he would remain very quiet for at least an hour, very much out of character! At five months the seizures became more frequent, still with no apparent triggers. Typically he would have three a day, which gradually increased to 14 a day by the age of 18 months. Still the GPs said breath holding, finally agreeing to do an EEG at 18 months. The EEG result did not suggest epilepsy, so it must be breath holding.
Just before this episode, our friend had seen Trudie Lobban on national television, and immediately thought the symptoms sounded exactly like my son’s. I immediately contacted STARS. The relief was immense, someone who understood, who didn’t say ‘it’s just breath holding’ but offered an explanation which gave me the confidence to go back to my GP. But he still wouldn’t listen. He’d never heard of reflex anoxic seizures (RAS). Trudie sent me videos of children having a reflex anoxic seizure, it matched my own experience. The frequency of his seizures went up and down. They gradually decreased until, by the age of four he seemed almost seizure free, although he continued to have what we termed as ‘near misses’ until the age of about seven, where he didn’t completely pass out. So we never had a formal diagnosis but we are convinced, as are some medical professionals I have since spoken to, that RAS was indeed what he has.
“The relief was immense, someone who understood, who didn’t say ‘it’s just breath holding’ but offered an explanation which gave me the confidence to go back to my GP.” Robert is now 21 and at university. He recently phoned me to say he’d had a few fainting episodes and what sounded like ‘near misses’. Once again, I contacted STARS and know that they will always pass on information or research about any of the issues, such as returning RAS in adulthood etc. Despite early and ongoing problems with IBS (extreme sensitivity around his scalp!) and some residual speech problems he lives independently, is set to be a fully functional adult ready to make his mark on the world and collect his degree in October. So the tale has a happy outcome, and if the faints are the return of RAS then this time I know we will get a diagnosis thanks to Trudie and STARS, and we will be able to cope knowing that after 20 years she or one of her team are still there to listen. Jane Ranger, Pevensey, East Sussex
STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD
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FAQs on low blood pressure Syncope (fainting) can be caused by a fall in blood pressure (orthostatic hypotension) when you stand up. It is more common in older adults, particularly in the over 65s. In blood pressure readings, what do the top and bottom numbers mean? Blood pressure recordings consist of two numbers. The top one is systolic blood pressure and relates to the contraction of the left side of the heart. The bottom number is the diastolic recording and is the lowest pressure achieved in the circulation.
My daughter has low blood pressure and complains of feeling tired. Is this symptom normal? Yes. Common symptoms of low blood pressure include syncope (fainting), pre-syncope (near fainting, usually associated with feeling light-headed), sweating, tiredness, slow thinking (brain fog), nausea, visual blurring, hearing disturbances, headache, palpitations, neck pain, breathlessness and chest pain. However, it is important to remember that for some people, in particular young people and athletes, low blood pressure can cause no symptoms at all.
I’m aware that heat and standing for long periods can cause low blood pressure, but are there also other factors which I should be aware of? There are many factors which can contribute to low blood pressure. In some people, they only have one factor such as fear. In others, there is a combination which together can cause problems, such as prolonged standing, heat, alcohol and hyperventilation (over-breathing) may also contribute.
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It occurs more often in older people who are taking a lot of medication. However, it can cause symptoms in younger people. There may be underlying medical conditions such as joint hypermobility syndrome, diabetes, Parkinson’s disease, Addison’s disease or autonomic failure. Dehydration, hunger, low body weight and deconditioning (being out of shape/unfit) can reduce blood pressure.
What action should I take if I’m feeling faint? If you feel that your BP is dropping act immediately! Try to sit or squat, or better still, lie down and elevate your legs in the air. If you are unable to do this, cross your thighs, clench your buttocks and fists. As an alternative to crossing and uncrossing your legs, clench your hands and fists repetitively. Tapping toes on the floor can also increase your blood pressure. Get up cautiously when you feel well again. If you have orthostatic hypotension ‘fist-clench’ and ‘toe-tap’ whilst sitting before you stand up. Drink two glasses of water as soon as possible.
I’m confused by all of the different types of low blood pressure. How does orthostatic differ from post-prandial? There are many different types of low blood pressure and it can be very confusing. Below are just some of the most common: Orthostatic hypotension Orthostatic hypotension, sometimes called postural hypotension, is a sustained, prolonged fall in systolic
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within ten minutes of becoming upright (or to more than 120 bpm). Although the definition says that there is no BP drop in PoTS, some people with PoTS also drop their BP and, occasionally, heart rate. BP of at least 20 mm Hg or diastolic BP of 10 mm Hg within three minutes of standing up (or with head-up tilt to at least 60° on a tilt table). Postprandial hypotension If blood pressure falls as a consequence of eating food, this is called postprandial hypotension. ‘Prandial’ means related to a meal. This problem is thought to be caused by dilation of blood vessels in the abdominal cavity and increased blood flow to the bowel, which reduces overall blood pressure. Neurally mediated hypotension Neurally mediated syncope (also known as neurcardiogenic syncope) occurs when there is a drop in blood pressure which results in fainting. It is often associated with a drop in heart rate.
My doctor suspects that I have postural tachycardia syndrome (PoTS) and orthostatic hypotension. Is it possible to have both? The symptoms of PoTS and orthostatic hypotension can be very similar. In fact a number of people experience both problems at the same time. During a stand test or a tilt table test, people with PoTS have an increase in heart rate of 30 beats per minute or more
This is because the abnormalities in the autonomic nervous system that cause PoTS can also cause a drop in BP. This combination of findings is common in joint hypermobility syndrome and chronic fatigue syndrome. I’ve just been diagnosed with low blood pressure. What self-help advice would you give to someone to manage it? High fluid intake is usually recommended i.e. two to three litres per day (except in conditions such as heart failure and severe kidney disease). Drinking two glasses of water can be beneficial before undertaking activities that may worsen symptoms e.g. shopping. There is some evidence that a high salt intake can help, but only on the advice of your doctor as this can be dangerous in some medical conditions. Aim for 6g (one level teaspoon of table salt or ten slow sodium tablets). Avoid identifiable triggers. For example, if a person is vulnerable to dizziness and faints after eating, the symptoms can be lessened by eating small meals often and avoiding refined carbohydrates or at least until later in the day when they can lie down. For further information and advice, contact STARS.
STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD
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Exercise Painting rehabilitation from the heartfor syncope and PoTS – my experience alternative medicine but in the end none of it did anything for me. Over the years I picked myself up, and made use of the good days; I finished my Masters at university and I was enthusiastic to continue an academic career. During my research I travelled to England frequently and met my future husband. I moved to England, and we now have two children. Over the years I folded and kneaded my life around my illness. There were a lot of off-days, a lot of scares, but we managed together.
“I grieved my past active life and felt depressed about not knowing what was going on and not being able to get help.“ In 2007 I had a particularly bad period. It scared me enormously so I decided to seek advice. My GP surprised me by taking me seriously. I was referred to a neurologist. The neurologist concluded he could not find anything wrong, except a raised heart rate and blood pressure at times. Although he did not know the cause of the high heart rate, I was prescribed betablockers. Once I got used to these I stabilised a bit.
The Blue Dress, by Sophie Ploeg
Talented and award winning artist, Sophie Ploeg battled for 16 years without a diagnosis before being correctly diagnosed with syncope and PoTS. Sophie shares her story… It all started in 1994. I was 20 years old and studying for my Masters in art history. I had always been a healthy happy person with a positive outlook on life. I am Dutch and grew up near the west coast of the Netherlands. During a two week study trip to Florence I suddenly felt a wave of nausea, shakiness and dizziness come over me. An Italian doctor was called who told me dryly I should just eat more meat.
In 2010 I decided to ‘try’ another specialist again. I was ready for battle, defense, and disappointment, but he said: “Before I tell you what you have, I need to ask you a few questions.” I nearly fell off my chair. He told me I have vasovagal syncope (or perhaps postural tachycardia syndrome (PoTS)) and referred me to STARS.
Back home I went straight to my GP who did not know the cause. A consultant who did a range of tests found nothing.
A year went on and I decided to see another specialist who refined my diagnosis to PoTS. I cannot begin to tell you how amazing it feels to finally know what is wrong with me! I am now (still on beta-blockers) functional and happy, have friends and do what I love, but it has meant making compromises and accepting my limits. My career as an artist is growing and I am excited about the future.
My dizziness continued and I felt exhausted all the time. I also suffered from muscle pains, palpitations, and nausea. My new GP thought I was over-anxious or depressed. I grieved my past active life and felt depressed about not knowing what was going on and not being able to get help.
Inspired by my experiences I created a painting in which I tried to express how it feels to be dizzy all the time. The Blue Dress is for sale with a percentage of the profits going to STARS and PoTS UK.
Slowly I realised that even though I might have something chronic and serious I could not stay in bed for the rest of my life. I dived into the path of
Sophie Ploeg, South Gloucestershire www.sophieploeg.com
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Why are doctors unfamiliar with
PoTS? Many patients with postural tachycardia syndrome (PoTS) are unhappy about their experience with their GP and consultant. Dr Lesley Kavi provides information on why this can occur and what is being done to improve understanding. Why do few doctors recognise PoTS? Many GPs and consultants have not heard of PoTS. Patients will visit their GP or hospital doctor on many occasions, but doctors do not recognise the significance of their symptoms. Occasionally even patients do not realise the significance of their own symptoms as they have lived with them for a long time. Symptoms of PoTS are ‘non-specific’ - this means they occur in many different medical conditions. A normal response to stressful events can produce symptoms similar to PoTS.
Why are doctors and nurses unaware? PoTS was first officially described in 1993 and many GPs, consultants and nurses trained before this time. Healthcare professionals learn by reading articles in medical journals and attending courses. Slowly, these sources of information are embracing PoTS, but it all takes time.
Why does my GP seem so impatient? GPs usually have ten minutes to spend with each patient. For each problem, they may be expected to listen to the patient’s story; ask questions; wait for the patient to undress to examine them; check previous medical problems; formulate possible diagnoses; discuss investigations and risks; discuss treatment options, fill in forms; write prescriptions; dictate a letter; arrange follow-up and then type every detail of what they have done onto their computer. Some patients bring several problems to each consultation and this process has to be repeated several times. And all in 10 minutes! In addition, on a daily basis GPs are further delayed by emergencies and interruptions. Doctors have to
constantly make judgements about how much to do and how much is safe to omit in order to see all their patients. Perhaps this is why medicine is considered both an art and a science.
How should I approach my doctor? If you have a number of symptoms, list them in order of when they first started. Ask the receptionist if you could book a longer appointment as your problem is complicated. Be prepared to return on another day if this is not possible. Tip: If you suspect the doctor may not know about PoTS, print a leaflet from STARS to take to the consultation. If you require referral to a specialist, you will find lists of consultants with an interest in PoTS and syncope on the STARS website and other support group websites to suggest to your GP. Unfortunately, not all doctors are happy with such a pro-active approach by patients and sometimes it is necessary to seek an opinion from a different doctor.
Why are hospital waiting lists so long? Even if PoTS is suspected, there can be long waiting lists for outpatient appointments and tests. Knowledge about PoTS is increasing and therefore referrals to hospital specialists are growing, but the hospitals do not have sufficient resources to fund more clinics to investigate this condition.
What is being done to improve awareness? Medical professionals are constantly being made aware of this debilitating condition through websites, emails, medical journals, press articles and support groups constantly ‘banging on the door’. Could YOU share STARS information leaflets with your GP/hospital? Email info@stars.org.uk
STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD
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Thank you to all our STARS supporters Thank you to everyone who has supported STARS during its 20th year. Whether you have donated, organised or participated in a fundraising event or volunteered, we would not be here without you! Let’s make the next 20 years bigger and better! This is what some of our fundraisers have been up to so far this year: Waddo Wives Craft Fair based in Lincolnshire raised over £250 for STARS. We are extremely grateful for your support.
Avid STARS fundraiser Chris Manders cycled 950 miles in eight days taking him from John O’Groats to Lands End, raising almost £3000. We are extremely grateful you battled the elements for STARS!
Seema Kavi celebrated her birthday in March by cycling 25km and raised over £500, doubling her initial fundraising target. A fantastic achievement! Well done.
Semi Kavi preparing for her birthday bike ride Demi Niblett customised plimsolls as part of her second year university course
Sam and Darren Godfrey with Mr Motivator before the start of the London to Brighton Challenge
237th Birmingham Scout Group Leaders participated in ‘The Chase Walk’, a 40 mile walk across Cannock Chase and raised over £400. Thank you to Lianne, Stuart, Amelia, Tracie, Alexander, Dave, Derek, Ian and Tom. In March, Peter Herbert raised over £75 by participating in the Bogle Stroll - a 55 mile walk around the Manchester area in 24 hours. Sounds more like an epic endurance event rather than a stroll!
Superhero Wayne Judges near the finish line of the Yeovil Half Marathon
Five employees from UrbanEdge architecture firm, Chris Robertson, Darren Hodgson, Jez Power, Anthony Mackin, and Joshua Rowley got filthy in the Rat Race Dirty Weekend completing 13 miles and 150 obstacles across land and water! They raised £2500 through their fundraising challenge which was matched by UrbanEdge, raising their total to £5000. An amazing achievement.
Super hero Wayne Judges participated in the Yeovil Half Marathon in March and raised over £400.
Karl Johns raised almost £600 pounding the streets of London in the London Marathon. A big thank you.
Maria Carter and friends after completing the Manchester 5km Colour Run
237th Birmingham Scout Group embark on the ‘Chase Walk’
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Cool Kidz Nursery raised a cool £200. Thank you.
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£1500 was raised by The Warren, an amateur theatre group based in London. A fabulous performance.
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Sam and Darren Godfrey participated in a 100km walk, the London to Brighton Challenge, raising almost £400. We are exhausted just thinking about it! Well done.
Charlotte Robinson with her nephew Louis Team UrbanEdge before they took on the Rat Race Dirty Weekend
Charlotte and Steve Morgan participated in the Bupa London 10,000 and raised almost £200. We are extremely grateful for your support.
Greater Manchester Police held a dress down day. I wonder if they dressed up as cops and robbers?!
Diane Hughes raised £40 by holding a stall at her work summer fair and emptying her jar of small change.
Jane Bateson has been baking cakes throughout the year and donated the proceeds to STARS.
Prints of The Blue Dress by Sophie Ploeg have been produced and are being sold to raise funds for STARS. Further details visit www.sophieploeg.com
Maria Carter along with friends participated in the Manchester 5km Colour Run, raising over £250. Thank you to you all, it looks like great fun. Demi Niblett nominated STARS as a beneficiary from her second year project at Glamorgan University. The challenge consisted of one week to plan, set up and run a business in an attempt to make as much profit as possible. STARS received £700 following Demi’s fancy footwork.
Chris Manders battling the elements cycling from John O’Groats to Lands End
Saskia Haining ran in the British London 10km and raised almost £2,000! A fantastic achievement, thank you! Saskia is featured on the front cover.
Charlotte Robinson organised an evening fundraiser following the support received by her family after her 18-month old nephew Louis was diagnosed with RAS. Over £600 was raised, thank you. Rebecca Dugard took on a gruelling six-hour bike ride along the coast line from Gosport to Brighton Pier raising over £250.
Apologies if we have missed you off our list of fundraisers, we are extremely grateful to all of our fundraisers, donors and volunteers. If you would like to feature in the next issue of the newsletter, please do get in touch. If you have felt inspired by our fundraisers and would like to fundraise on behalf of STARS, please get in touch by emailing fundraising@stars.org.uk or telephone 01789 450 564.
STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD
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SARAH McCLAY 12 September 1988 – 24 May 2013 In May this year, many of you will have read of a young zoo keeper who was mauled by a Sumatran tiger at an animal park in Cumbria. Sarah McClay was one of our very first young volunteers. Soon after STARS was established, her mother, Fiona, contacted Trudie and they became firm friends. As Sarah grew up she too wanted to help the charity that had supported her as a child with RAS. A vibrant, charismatic young lady she came to our offices one Saturday and confidently addressed the meeting. She also wrote an article for the STARS newsletter. We loved her. Studying animal conservation at university, her intense love for animals led her to the animal park and the big cats. At home with her partner, David Shaw, they were passionate in their work for red squirrel conservation. Sarah also had a brother, Stephen 27 and sister, Lucy, 20. With Fiona and David, they are a close-knit family to whom we send our love. Sarah will be remembered for the energy and devotion with which she lived her short life. Trudie Lobban MBE
Back to school!
STARS syncope and RAS alert cards are available in packs of 20 at the low price of just £1.00 (a bargain!) To order, send £1.00 together with your name and full address, indicating which cards you need, to Jenni Cozon, STARS, 15 High Street, Shipston on Stour, Warwickshire CV36 4AB.
NAME:
I suffer with SYNCOPE
(this is not connected to epilepsy and
is NOT life threatening) Please make sure I am safe Please put me in the recovery position Please talk quietly to me and wait for me to regain consciousness (normally only 1 or 2 mins)
CALL IMMEDIATELY: If injured or concerned also call
s Seizure AnoxicT life threatening) eflex an NO y d is with R ps r e ile ff ep I su connected to E:
M NACY for EMERGEN SERVICES - 999
t (this is no I am safe n ake sure recovery positio Please m e me t me in th me and wait for mins) Please pu to ly 1 or 2 ly iet mally on lk qu Please ta nsciousness (nor co in ga to re TELY: 9 MEDIA ES - 99 SERVIC CALL IM d If injure
erned
or conc
Y ERGENC ll for EM also ca
Alert cards on offer Have you remembered to order RAS or syncope alert cards ? Popular with all ages because of the simple manner in which they inform and protect, they are ideal to pop in school bags or trouser pockets. Just the size of a credit card, the STARS alert cards provide key information for new carers, work colleagues, family friends, schools and the general public and so help YOU!
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We also have sample care plans and support materials designed for staff and families who are managing the care and education of young people with syncope. Similarly, there is the syncope education DVD which provides information on how to care for pupils who have been diagnosed with syncope conditions as they move from nursery to university. There is a suggested contribution of £5 for the DVD which is accompanied by our Resources and Information for Schools booklet. Email jenni@stars.org.uk for further details.
Dress down day or school bake sale? Don’t forget Fiona our fundraising officer is here to help if you are thinking about nominating STARS to be this term’s charity of choice for your form/school. Fiona is brimming with new ideas. Email fundraising@stars.org.uk
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Guest speakers at STARS Patients Day 2013 Dr Axel Brandes is a consultant cardiologist / electrophysiologist and an Associate Professor of Cardiology from Denmark. Most importantly, of course, Axel heads up STARS and AFA Denmark. He runs a busy syncope clinic in Odense and has been pivotal in developing patient resources for syncope and AF patients in Denmark. He has an interest in the benefits of devices for syncope. Dr Jan Till is the lead consultant paediatric electrophysiologist at the Royal Brompton. She runs busy clinics for children with suspected cardiac arrhythmia and those who have sustained episodic collapse, as well as seeing families with potential channelopathies and inherited arrhythmia. She has three children and can empathise with worried mothers. Dr Blair P Grubb is a professor of Medicine and Paediatrics at the Medical College of Ohio, Toledo, USA. Respected by many medical professionals and patients as the world expert on PoTS, we are delighted to offer members the opportunity to listen to Dr Grubb and for some to ask questions. Prof Richard Sutton is a world authority in vasovagal syncope and internationally recognised for his research in syncope and autonomic function. Cardiac pacing and syncope represent particular areas of his speciality. Many of our members have been patients of Prof Sutton and are already looking forward to listening to him. Dr Robert Sheldon is a consultant electrophysiologist from Calgary, Canada, where he runs a practice in arrhythmia management, dedicated to understanding the causes and treatment of cardiovascular autonomic disorders. Dr Sheldon has strong views and is a charismatic speaker.
Di Shimell, a qualified acupuncturist, is a member of the British Acupuncture Council. In September 2012 NICE guidelines included acupuncture as a second line treatment for severe headaches. Di is experiencing considerable success in treating PoTS patients with this method.
Holly Robson has a young daughter, Georgie-May. She will be telling her story of her fight to avoid her daughter being misdiagnosed with epilepsy.
Dr Nicholas Gall (Nick) is a consultant cardiologist at King’s College Hospital and an Honorary Senior Lecturer for King’s College London. He specialises in arrhythmia management with a particular focus on dizzy spells, blackouts, PoTS and, in collaboration with neurological colleagues, symptoms which may have a possible neurological cardiological basis. Nick is also known to inject humour into his presentations! With a new STARS booklet on blood pressure, this topic is already attracting great interest.
Do you have
an iPhone 4/4s or 5? If have been diagnosed with or suspected of having a heart rhythm disorder, you could be the proud owner of an AliveECG heart monitor for FREE! The AliveECG turns your regular iPhone into a medical grade, single channel event recorder. All that is asked in return is that you make at least one recording for approx. 30 seconds a day for three months. Why? The folks at AliveCor in San Francisco are working hard behind the scenes to understand the full dynamics of heart rhythms and want to increase the number of patient recordings in their database. You can be a part of this important work that will go onto benefit many thousands in the future. Interested? Visit www.stars.org.uk to register for your FREE heart monitor
STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD
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STARS Patients Day Agenda
Heart Rhythm Congress 2013
Sunday, 20th October 2013 The ICC, Birmingham UK
• •
10am 10.05
• • • •
10.30 11.00 11.15 11.30 11.45
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12.10
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12.35 12.45 13.45 14.05 14.30 14.40 15.30 16.00
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Welcome to STARS 20th anniversary Patients Day The trouble with doctors: why don’t they know about RAS, syncope, PoTS and respect the implications of dismissing that ‘not so simple faint’ RAS and other fainting spells in school-age children Questions BREAK RAS patient story Treatment of syncope with pacemakers: new element of treatment which is provided by the ISSUE 3 study The value of tilt table testing: “Many patients are investigated with tests both useless and expensive” Questions LUNCH Acupuncture to relieve debilitating headaches: NICE approved procedure The highs and lows of blood pressure Questions Dysautonomia - evaluation and treatment Time to circulate and ask questions of the experts Close
Trudie Lobban MBE
Axel Brandes Jan Till
Holly Robson Richard Sutton Robert Sheldon
Di Shimell Nicholas Gall Blair Grubb All
A full day meeting with refreshments and lunch. 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
Personal details
Address:
Full Name: Telephone: Email:
Postcode: Subscriber
Please tick the box whether you are: Please record the name of each person attending with you:
Non-subscriber
Patient Carer/Friend Vegetarian
Gift Aid is a government scheme which allows us to claim tax back from the Inland Revenue. For every £1 donated, we can claim an extra 25p. To enable us to claim gift aid you must be a UK taxpayer and pay an amount of income/capital gains tax at least equal to the tax to be reclaimed on your donations. I would like Syncope Trust And Reflex anoxic Seizures (Registered Charity No. 1084898) to reclaim the tax on all donations I make on or after the date of this declaration until I notify them otherwise. Sign ...................................................................................................................
I enclose a cheque payable to STARS for £
Date .......................................................................
/ I enclose a postal order for £
Please send completed registration form to: STARS Patients Day, STARS, PO Box 175, Stratford Upon Avon, Warwickshire, CV37 8YD 12
Tel: +44 (0) 1789 450 564 Registered Charity No. 1084898©2013