Take Syncope
to Heart
Providing information and support on Syncope, RAS and POTS
Pressure Situation
Setting up a Rapid Londres a Barcelona Access en bicicleta University boys do it for STARS! Blackouts Clinic One mum discovered the surprising cause of all of her problems
The Middlesbrough Experience
Patient story “I was misdiagnosed with epilepsy for twenty years”
Top tips and advice on how to prevent faints Issue No: 36
February 2012
Registered Charity No: 1084898
New Year message from Trudie Lobban, MBE Founder & CEO Happy New Year from us all at STARS!
“A significant mile stone was achieved in October when STARS launched the Take Fainting to Heart campaign across America”
2011 was a memorable year, with the opening of three Syncope and POTS clinics across the UK – Sheffield, Middlesbrough and Birmingham. Each clinic is supported by a Consultant and Specialist nurse and we are very encouraged by this initiative in providing access to diagnosis and treatment for these debilitating conditions. Our annual Patients Day was yet again a huge success and some say the best yet! Those who couldn’t make it missed the opportunity to listen to leading UK syncope specialists as well as a mother and son, Lesley and Kieran Kavi and volunteer Anita Kiernan talking about the impact of syncope on their lives. Among the speakers was GP, Dr Matt Fay, telling us how to talk to our doctors, Dr Nick Linker explaining everything you need to know about ILRs (Loop Recorders) and much respected Paediatric Cardiologist from Scotland, Dr Karen McLeod discussing pacemakers in the young. From across the pond, we had the privilege of welcoming Beverly Karabin from the University of Toledo, helping us understand why people faint and what can be done about it. Of course, no Patients Day would be the same without Dr William Whitehouse who supports us every year to give reassurance to all the worried mums whose child has been diagnosed with RAS. A significant mile stone was achieved in October when STARS launched the Take Fainting to Heart campaign across America. The aim of the campaign was to encourage people to take fainting seriously and urge those who have fainted to visit their doctors. Launching this campaign, I undertook a non-stop twelve hour media tour, starting at 5am with the breakfast shows and finishing the day with magazine interviews. This campaign will run during 2012 and is a serious message to us all to take fainting to heart.
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We are one month into 2012 and already another landmark has been reached! I am extremely proud to announce that on 10th of February we will be launching STARS in Ireland. This initiative is the brain child of Prof Rose Anne Kenny, Patron of STARS and pioneer of the first Syncope and Falls clinic in Newcastle. With the support of Prof Kenny and her Senior Syncope Nurse, Ciara Rice, STARS will be launching a new website and specific information and support for syncope patients and carers in Ireland. The launch coincides with a National Syncope training day for healthcare professionals on syncope in the emergency department at St James’s Hospital in Dublin. Like the Queen, we are now building bridges across the Irish Sea! This is the year of Olympics and we are very proud and excited that a STARS member has been asked to be a torch bearer when it passes through Kent. Congratulations to Harminder Gill who will be carrying the torch for STARS! Other STARS athletes will be participating in the Great West run, Adidas Silverstone half marathon, and the Edinburgh and London marathons, raising much needed funds for STARS, so look out for the blue t-shirts! It’s going to be a gold medal year for STARS. As many of you know, much of my time now is travelling the world, speaking at conferences, meeting with doctors, talking to decision makers in an effort to improve the facilities for all of us who are struggling with these debilitating and upsetting conditions. However, I am always mindful of the support, donations and fundraising you give and do for STARS. Thank you all because it is the united voice of STARS members that has helped us achieve this.
@ info@stars.org.uk
➚ www.stars.org.uk
Outstanding Contribution to Arrhythmia Services marathons at the other end of the world for STARS), she has never forgotten us! Even on her wedding day she forewent wedding favours so money could be donated to STARS. We were very excited when she told us the news that she was expecting a baby but thrilled when she immediately asked if we thought our members would appreciate her writing a pregnancy diary – this diary has been the source of support to numerous mums to be and welcomed by Syncope Clinics! ! You can read this on the STARS website http://www.stars.org.uk/patient-info/conditions/ pregnancy
Trudie Lobban presenting award to Anita Kiernan
Anita Kiernan scoops the Charles Lobban Volunteer Award for Outstanding Contribution to Arrhythmia Services. This year’s winner of the Charles Lobban Volunteer Award is very special to STARS. Despite enduring multiple dizzy spells and collapses, Anita has always gone above and beyond as a volunteer for STARS. Through stressful times, with the support of her husband, Eric, and brother in law Glen (who ran
With her lively daughter, Eva to keep her on her toes (!), Anita is now successfully juggling motherhood with a return to work. We receive regular donations from her department, following bake-ins and dress down days. An indication of how respected and admired our ‘STAR’ is. Ever conscious that STARS is dedicated to raising awareness, she agreed to do an interview for the Daily Mail on POTS and how it affected her family life. This was particularly hard as she is a private person. And then we asked if she would consider speaking at Patients Day! Anita’s full story, together with the other presentations from Patients Day 2011 can be found on the STARS website. Full details on how you can nominate someone for this year’s Award will be posted on the STARS website from August.
Join us at STARS Patients Day 2012 Sunday 23rd September 2012 Birmingham ICC Don’t miss out on your opportunity to learn from syncope specialists, share information and meet other patients and carers To register your interest, please contact Jenni Cozon 01789 450 564 or email jenni@stars.org.uk
STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD
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Setting up a Rapid Access Blackout Clinic The Middlesbrough experience In December 2010, The James Cook University Hospital embarked on a one year pilot scheme to provide a Blackouts Service to the South Tees Cardiovascular Network. Jayne Mudd, Nurse Consultant in Cardiac Rhythm Management, James Cook University Hospital discusses the impact of the clinic over the past year. Jayne Mudd receiving award for Outstanding Medical Contribution to Cardiac Rhythm Management Services at Heart Rhythm Congress 2011.
What is a Rapid Access Blackout Clinic? Rapid Access T-LoC Clinics (RATCs) are designed to ensure patients are always diagnosed and treated by the appropriate expert. They achieve this by taking referrals from all parts of the health system when patients present with a blackout/T-LoC or a fall. Often nurse-led, the clinic combines several disciplines from cardiology, neurology and falls to develop ‘blackout/T-LoC experts’ who will direct the patient to the most appropriate specialist.
What are the benefits of a Rapid Access Blackouts service? Misdiagnosis is remarkably prevalent among patients who experience a blackout/transient loss of consciousness. This means that fatal arrhythmias can be missed. Many patients are tragically misdiagnosed with epilepsy, and vast resources are wasted on unnecessary tests, inappropriate admissions, and the repeated re-referral of patients unsatisfied with no diagnosis. A Rapid Access Blackout / T-LoC Clinic can help to ensure swift and accurate diagnosis, and can be cost effective for the healthcare system as patients are not undergoing unnecessary or repeated investigations or hospital admissions before a diagnosis is reached.
What goes on at the Middlesbrough Blackout Service and what can patients expect from this service? At the South Tees Blackouts Service we hold one clinic and one review clinic a week. The clinics are nurse led with consultant support. The activities include history taking through a web based questionnaire, clinical examination, ECG, Echocardiogram, Holter monitoring and an EEG/ MRI the following day. We also provide a telephone helpline manned by the nurse team to provide support to patients, carers and healthcare professionals. Regular visits are made by the nurse team to accident and emergency and the medical admissions unit to encourage referrals to the clinic and raise awareness of our services.
What are the results of the first year of the pilot scheme? Results from the first year of the pilot have been extremely positive, we received 368 referrals from A&E, GP centres, Medical Admittance Units and the Rapid Access Arrhythmia Clinic. The Blackouts Service has significantly reduced waiting times, admission rates and bed days with a staggering 62% of patients receiving a diagnosis from their first appointment. Most importantly, 99% of patients reported overall satisfaction with the service.
Following the success of the first year of the pilot, South Tees Blackouts Service has secured funding to continue the clinic. The Rapid Access Blackouts Clinic has shown to be a success and we hope will be used as a best practice model for other syncope clinics across the UK.
Why not bring this to the attention of your doctor? Regional Cardiac Update Courses 2012 for medical professionals STARS in collaboration with Arrhythmia Alliance is proud to be continuing its series of cardiac update courses into 2012. Cardiac Update Courses are regional education days targeted at healthcare professionals involved in the management and treatment of heart rhythm disorders including Syncope and Atrial Fibrillation. The courses share key information from national guidelines with a local audience.
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Each course will provide a forum for primary and secondary healthcare professionals interested in: ♥ Syncope in the elderly ♥ Devices in inherited cardiac conditions ♥ Case studies ♥ Device therapy updates To register an interest in attending your local Cardiac Update Course in 2012 please email sara@stars.org.uk and you will be sent course details and registration forms when available.
@ info@stars.org.uk
➚ www.stars.org.uk
Take ‘Your Heart in Your Hands’ for Heart Rhythm Week Ever wondered how you can make a difference to the lives of people affected by syncope? Join thousands of STARS members across the UK to raise awareness and promote better understanding of syncope and heart rhythm disorders during Heart Rhythm Week 21st-27th May 2012. This year, the theme of patient empowerment, Your Heart in Your Hands, aims to encourage members of the public to recognise symptoms of syncope and heart rhythm disorders, and when they should seek further advice from a healthcare professional.
How can I get involved? Simply order a free Heart Rhythm Week awareness pack from STARS for your awareness activity.
What can I do with my Heart Rhythm Week pack? There are many ways in which you can get involved:
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if you know they are suffering from unexplained faints, palpitations or shortness of breath
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medical clinic
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Give a pack to a loved one
Share information in your local community by taking information to your local Display information at your local hospital, shopping centre, or supermarket to
raise awareness of Heart Rhythm Week and encourage patients to seek further advice for their symptoms
Support Heart Rhythm Week by sharing your story.
Help us to inform the public about syncope and heart rhythm disorders.
Order your FREE Heart Rhythm Week pack today and make a difference to the lives of people affected by syncope and heart rhythm disorders.
Contact Pippa to order your pack(s) Tel: 01789 450 564 Email pippa@stars.org.uk Or order direct at www.heartrhythmweek.org
STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD
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Blood Pressure and Blood Pressure Machines 2. They can help patients link and recognise symptoms in relation to changes in blood pressure and heart rate. 3. They can assist with monitoring of treatment.
What exactly is blood pressure? Blood pressure (BP) is the pressure generated within your arteries by the pumping action of your heart. Normal blood pressure is approximately 120/80, but there is a range of values considered to be normal.
Are there different types of blood pressure machine? There are many varieties of machine including:
The top number (120) is the systolic blood pressure and relates to the pressure produced when the heart muscle contracts. The bottom number is the diastolic blood pressure (80) and relates to relaxation of the heart muscle. Hypertension is defined as blood pressure consistently above 140/90. However, it is normal for our blood pressure to rise above this level at times throughout the day in response to stress and exercise. People do not tend to experience symptoms with high blood pressure unless it is extremely high. Hypotension is defined as blood pressure below 90/60. However, some healthy people such as athletes will have a blood pressure below this level and experience no problems. What is important is whether or not they have symptoms associated with the low BP eg dizziness, fatigue, syncope, visual disturbances. As a rough guide, people tend to faint if their systolic BP is below 60.
• 24 hour BP monitors. These are provided by the hospital or GP. They monitor blood pressure and pulse automatically at intervals during the day and night. Some of them can be triggered by the patient to take a recording when symptoms develop. • Manual BP monitors. These machines require a stethoscope and special training to operate them. They are often used by nurses and doctors • Automatic BP monitors. These are usually battery operated and show BP and heart rate on a digital display. They usually have a memory to keep a record of previous readings. They have a cuff that fits around the upper arm or wrist and are easy to use. Patients usually choose these ones for home use. Which machine should I buy for home monitoring?
This is when your BP is higher than normal because it is measured in a clinical setting (eg hospital clinic or GP surgery) by a health care professional. 24 hour BP monitoring or self-monitoring at home can determine if a patient has white coat hypertension.
The British Hypertension Society has a list of validated BP machines on its website. This means that the machines have been appropriately tested and approved. The list includes automated digital arm and wrist monitors and is updated from time to time. Machines can cost from as little as £9.99. http://www.bhsoc.org/bp_monitors/automatic.stm http://www.bhsoc.org/bp_monitors/automatic_ wrist.stm Wrist monitors must be held at the level of the heart and are more difficult to use. Upper arm monitors are therefore considered more accurate than wrist ones. Special machines may be necessary for children, pregnancy and very obese people.
When are blood pressure machines useful?
How often should I record my blood pressure?
Blood pressure machines (also known as sphygmomanometers or ‘sphigs’) can be helpful to patients with syncope in a number of ways.
When initially being assessed to find a diagnosis, it may be helpful to make several BP and heart rate recordings throughout the day and occasionally at night. Recordings can be made during different activities, such as lying, sitting, standing and after
Patients with Postural Tachycardia Syndrome (POTS) can experience hypotension-like symptoms and faint when their BP is normal or high! What is White Coat Hypertension or ‘White Coat Syndrome’?
1. They help the medical professional provide a diagnosis.
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meals or exercise. You may be asked to stand for 5 minutes and make recordings at 2 minute intervals (done under supervision and in a safe environment if you tend to faint).
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Recordings can help monitor response to treatment. Some drugs (eg midodrine, fludrocortisone) can cause BP to rise to dangerous levels when lying down (also called ‘supine’). It can be helpful to record supine BP after the drug is started or the dose is increased. Once your diagnosis is clear and treatment stabilised, you may not need to record BP and heart rate as often. Once a week or once a month may be sufficient. Are there any pitfalls? •
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People can become obsessed with recording their blood pressure and check it unnecessarily several times each day. They can become overanxious about the readings. It is normal for our blood pressure to fluctuate throughout the day. It may be helpful to ask your doctor or specialist nurse how often to record and what range of BP readings are acceptable for you. Some machines will not record accurately if your heart beat is irregular or extremely fast.
Ensure that the cuff around your arm fits correctly. For example, if the arm cuff is too small, it will give a falsely elevated recording. Measure the distance round your arm midway between elbow and shoulder. Cuff Sizes:
Small Standard Large
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18-24cm (7-9½ inches), 23-35cm (9-14 inches), 35-40cm (14-16½ inches)
With time, machines may cease to record accurately. It is important to have them serviced from time to time (eg once a year). They can be returned to the manufacturer and serviced for a fee (it may be cheaper to buy a new one!)
A last word of advice Not everyone needs to monitor their BP regularly at home. If you think you would benefit from purchasing a home BP monitor, discuss with your health care professional (eg doctor or nurse). They will advise you IF you should buy one, how often and when to record, and what BP readings are acceptable for you. Dr Lesley Kavi GP
Win a year’s supply of Cardioace® UK’s No 1 comprehensive heart health formula Cardioace® from Vitabiotics is a scientifically developed food supplement designed to help maintain normal heart health and circulation. It is the number 1 most trusted comprehensive formula for heart health in the UK and has been developed on the basis of extensive world-wide research. NEW Cardioace® Plus combines Cardioace® multivitamin with 1.3g of plant sterols and Cardiol botanical complex (containing Lycopene extract from tomato, Alpha Lipoic Acid and Resveratrol). Plant sterols can help to maintain normal blood cholesterol levels. For more information visit Cardioace.com To be in with a chance of winning a year’s supply of Cardioace Original, simply answer the following question and send your completed form to: STARS, PO Box, Stratford Upon Avon, Warwickshire, CV37 8YD In what year was STARS founded?
A: 1993
Name:
Address:
B: 1998
C: 2001
Email: Please tick if you wish to receive information directly from Vitabiotics
STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD
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Pressure Situation After years of dizzy spells, fainting fits and not being taken seriously by doctors, one mum discovered the surprising cause of all her problems, as Rachel Carlyle reports. Mother of three, Alexandra Whitman considers herself a pretty healthy person, yet she would think nothing of eating several packets of crisps in one go or pouring salt on her food. That’s because Alexandra has low blood pressure (BP), which can cause lethargy and dizziness – if it falls too far she’ll start blacking out. Eating plenty of salt is one way to manage her condition. “I ignore the advice on salt intakes so when I have a craving for salt and vinegar crisps I’ll eat them”, says Alexandra 51, from Salisbury, Wiltshire. “I eat ridiculously high levels of salt but I’ve never had a high blood pressure reading, not even when I was pregnant.” “People often say, lucky you, because we’re more used to the dangers of high blood pressure. But they don’t understand how sluggish having low blood pressure can make you feel, especially as a working mother”. Blood pressure varies widely between individuals but in general a 90/60 reading is considered on the low side, while 120/80 is normal and sustained 140/90 is high. Alexandra’s reading is on the lower side of normal but her blood pressure control system is so over-sensitive that her pressure can suddenly drop – particularly if she has a sudden shock or minor injury, and is stressed or dehydrated. She will faint and her BP can drop to 105/55, at which point she isn’t even able to get out of bed without help. Alexandra has had regular blackouts, of usually around 30 seconds, since she was eight years old. She would faint up to four times a term at school, but her doctors put it down to growth spurts. The worst incident she remembers was 12 years ago when she was packing a weekend bag. She suddenly fainted and fell into it, landing on a mobile phone charger and dislocating her jaw.
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Once she fainted while feeding her youngest daughter Hannah, but luckily she fell backwards into a chair, and when she came round, the baby was lying uninjured on her chest. As her GPs had not diagnosed anything serious, Alexandra just considered herself a “fainter” – until she watched her daughter suffer the same thing when she was six years old. “One day, coming into the kitchen, she banged her elbow on the door-frame and just crashed on the ground. I realised I was watching what happened to me for so many years. She was pale with a bluish tinge around her lips and she wasn’t breathing: I thought I’d just watched my daughter die. It was truly awful”. At A&E the truth finally dawned. “The registrar asked if anyone else in the family had suffered similar symptoms. I said yes and he told me that it was a genetic condition called ‘reflex anoxic seizures’. At home I did a Google search and found the website of a charity called STARS, which had so many stories similar to mine that I couldn’t take my eyes off it. I remain indebted to that doctor because he opened a whole new world to me. “Before, I’d been made to feel like a hypochondriac. One doctor I saw told me I was ‘like a Victorian lady prone to swooning’. It was all I could do not to punch him”. Consultant cardiologist Nicholas Gall at King’s College, London, says he hears experiences like Alexandra’s all too often. “The people I see have often been labelled mad or hysterical for years and I’m the first person they’ve spoken to who recognises their symptoms,” he says.
@ info@stars.org.uk
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These types of faints are caused by a fault in the autonomic nervous system, when the nerves that steady blood pressure suddenly withdraw their input. Pressure falls and the blood supply to the brain is reduced, which causes dizziness and blackouts. Some people can have several attacks every week and girls and women are particularly prone: “No one knows why, but oestrogen mist have something to do with it” says Dr Gall. Doctors are currently seeing a rise in cases of low BP and blackouts. “There’s a school of thought that says because everything is salt-free or low salt these days, quite a lot of the population are salt deficient, which might explain why we’re seeing more cases of fainting,” says Dr Gall. Low pressure tends to run in families and is only if it causes symptoms such as fainting. GP and author Dr Rob Hicks says: “Some people just naturally have low blood pressure – there’s no explanation.” Many of his patients are those who’ve been over treated for high blood pressure. You might have had a stressful job and smoked (two leading causes of high BP) so were put on medication. But if you retire and give up smoking, yet stay on that same dose, your blood pressure may fall too far, leading to lethargy, fatigue and dizziness.
“One doctor I saw told me I was ‘like a Victorian lady prone to swooning’. It was all I could do not to punch him”. Low BP might also be due to extreme dehydration (from sitting in the sun all day without a drink, for example) or anaemia. And low BP in the over fifties can be caused by carotid sinus syndrome, where the artery in the neck that controls blood pressure becomes over-sensitive, particularly when compressed by a tight collar or by certain neck movements. Dr Hicks days: “As a GP, if I’ve ruled out everything – dehydration or a problem with medication – and they’ve only got low blood pressure, the next question is what do you do?” Lifestyle changes can make a difference in 70 percent of cases. Dr Gall recommends that his patients drink more water and eat more salt. There are also basic exercises that you can do as soon as you feel a faint coming on. You can cross and uncross your legs, or flex your calves to pump more blood around the body. Many people swear by moving up and down on the balls of their feet to prevent blood pooling there, which can significantly raise blood pressure. Regular aerobic exercise can also help by increasing blood volume and the efficiency of the calf muscles. “A lot of the treatment is gaining understanding of the condition,” says Dr Gall. “Most of the time that is enough to enable people to cope better.” Alexandra Whitman certainly hasn’t let her low BP hold her back: She’s run her own business, been a university lecturer, had three daughters and is now retaining as a learning support assistant for dyslexic children. “I’ve lived my life ignoring it as much as possible, although it has been a struggle,” she says. “Waking up not knowing if your body is going to hold out today is an odd feeling. I have been dismissed as a hypochondriac so many times that sometimes I’ve even thought, well, perhaps I am one. But at least I know the truth now.” Rachel Carlyle Sunday Magazine, Sunday Express 5th June 2011
STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD
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Fundraising Londres a Barcelona en bicicleta In July 2011, four university graduates; Leigh Rowley, Stephen Hall, Chris Payne and Freddie Webber swopped their text books for padded shorts when they set themselves a challenge to cycle from London to Barcelona in aid of STARS. Team Barca set off on their mammoth bike ride, a total of 908 miles on July 9th with the anticipation that they would reach Barcelona the capital and the most populous city of Catalonia fourteen days later on the 22nd July. The challenge was split into 11 stages taking on the Loire and Vienna River Valleys, Black Mountain
National Park and the Pyrenees before arriving in Barcelona. So all that is left is to thank you all for your support, and keep an eye out for the next tour which is rumoured to be bigger and better!” Team Barca raised a staggering £1, 556 for STARS. Congratulations on this fantastic achievement. Well done boys, we will look forward to hearing about your next fundraising endeavours. If you would like to read full details of Team Barca’s humorous account of their journey check out their website www.biketobarca.co.uk.
WORDS FROM THE BOYS: Freddie Webber “What can I say? A great tour with 3 great guys for 2 great causes! I had a fantastic tour and despite enduring wind, rain and sun burn I enjoyed every minute, having breakfast lunch and dinner all in different villages and towns gives you an unrivalled sense of travel! Cycling really is the best way to see a country.
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Leigh Rowley “The past two weeks have rolled by and I have enjoyed every moment. From winding up and down mountain trails to gorging out in tiny French villages, even the low points of this tour will be savoured.”
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Chris Payne “An absolutely unforgettable tour with a bunch of guys who certainly made it what it was. Everyone played their part and the meticulous planning and preparation paid off to make for a pain free journey (at least in some sense of the word!).
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Stephen Hall “I had an excellent time and it was an amazing feeling when we arrived in Barcelona knowing we had raised so much money for the charities and had all achieved such an amazing feat!”
STARS Young Fundraiser STARS youngest fundraiser Keenan from Birmingham took on the Five Ways Challenge in August 2011. 11 year old Keenan raised money for STARS during the school summer holidays as part of the Five Ways Challenge, set by King Edwards Five Ways School, Birmingham. Keenan chose STARS as his charity to support because his cousin has recently been diagnosed with Reflex Anoxic Seizures and Keenan wanted to learn more and raise awareness of the condition. Keenan organised his own event and cycled around Edgbaston Reservoir in Birmingham, 10 times totalling 17.5 miles. The event took place on Sunday 14th August 2011 and the event raised £184 Well done Keenan!
A year of fundraising for Devonshire family Katie from Devon is devoting 2012 to fundraise for STARS. Katie and her partner started off their fundraising year in November when they took a vow of silence for 24 hours. The sponsored silence was the first of many fundraising events that Katie is organising over the course of the next 12 months. Katie said “I have a lot of fundraising ideas in the pipeline and I am excited about this.” Katie is planning a sponsored swim in January, a car boot sale and potentially a fundraising ball at the end of 2012 to raise money and let everyone know what she has achieved. Good Luck Katie, we hope your fundraising year is a huge success.
Gordon’s Great North Run Gordon doesn’t claim to be a natural runner, but this didn’t stop him from running in the Bupa Great North Run on Sunday 18th September 2011. Gordon chose STARS as his nominated charity to benefit from the gruelling 13.1miles, because a good friend of his suffers from syncope. The 13.1miles has not deterred Gordon from participating in future fundraising events. Gordon has signed up to participate in The Mighty Deerstalker on 17th March with a group of friends including AJ who suffers from Vasovagal Syncope. The Mighty Deerstalker takes place at the Scottish Borders and is a 10km night time run incorporating hills, mud and obstacles. Thank you and good luck Gordon!
Creative Christmas for STARS Thank you to Lyn Bell who designed and made Christmas cards to sell to friends and family in exchange for donations. A fantastic £150 was raised for STARS. What a creative idea! Thank you Lyn and to those who purchased Lyn’s designs.
STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD
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Going for Gold The Baynes family from Leicestershire will be making 2012 a sporting year; they have signed up to the Gold Challenge a unique new charity challenge where your target is to complete 30, 20, 10 or 5 Olympic and Paralympic Sports by the end of 2012. The family have already tried out archery and judo and will be trying out other sports in 2012. The Baynes have decided to fundraise on behalf of STARS because the youngest family member suffers from Reflex Anoxic Seizures. If you would like to participate in the Gold Challenge and raise vital funds for STARS contact the fundraising team on 01789 450 564 alternatively email fiona@stars.org.uk. Good luck to the Baynes family!
Raffle winners announced!
Entry into the STARS raffle has now closed and the winning tickets have been drawn. The raffle was drawn by Wendy Adams, Head of Fundraising and the lucky winners of £50, £75 or £100 are: 3rd prize £50 – A Kirkpatrick, Coatbridge 2nd prize £75 – Tara Stanley, Paddock Wood 1st prize £100 – Bev Callaghan, Chapel St Leonards A special mention must be made of Jane Mackay, Kerrin McAllister and Maxine Cook who worked so hard selling books and books of tickets for STARS. Thank you so much!
We have received a very generous donation of £250 from the Freemasons’ Grand Charity. Dawson Whitman, grandpa of seven year old Ruby Whitman, who both live in Buckinghamshire, nominated STARS as Ruby was diagnosed with RAS when she was a toddler. Thank you very much for thinking of us. Thank you again to Broderick & Leslie, Chartered Accountants of Doncaster for your £150 donation in lieu of sending Christmas cards. Such a great idea. Regular readers of the STARS newsletter will recognise the name Bridget Nottingham and the catering staff of The Priory Federation of Academies Trust! We have received another cheque for £90 as a result of their fundraising efforts. Thank you all very, very much!!
Gift Aid Gift Aid is a government scheme which allows STARS to claim tax back from Inland Revenue. For every £1 donated, we can claim an extra 25p and in addition donations made between 6th April 2008 and 5th April 2011, HMRC will automatically pay us a further 3p for every £1 donated! To enable the fundraising team to claim tax back on your donations contact the fund-raising team on 01789 450 564 alternatively email fiona@stars.org.uk.
£
A huge THANK YOU to all those who have donated to the charity!
If you have been inspired by our STARS fundraisers and would also like to fundraise on behalf of the charity, contact the fundraising team on 01789 450 564, alternatively email fiona@stars.org.uk.
Thank you to all those who participated and sold tickets to friends, family and work colleagues
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Education Some Frequently Asked Questions for managing RAS and Syncope in the classroom Q My son is at nursery school and the teachers are asking how they can tell the difference between RAS and a breath holding attack.
Q My daughter has just started primary school but, unusually, does not want to go to any of the parties she is being invited to. Could this be related to RAS?
A Both RAS and breath holding are frightening to
A Children who have RAS are super-sensitive and
witness but they are not life threatening. With RAS, unexpected stimulus such as pain, shock and fright can cause the heart and breathing to stop. The complexion will be deathly white, blue around the mouth and sometimes the arms and legs will jerk. After seconds the body relaxes and the heart starts beating, although the child will be unconscious. A few minutes later they will regain consciousness.
everything seems twice as loud as it would to you or me. In fact, it ‘hurts’ their ears. This is one of the reasons children with RAS are often quiet and prefer to play by themselves or with one friend.
Breath holding is different to RAS in that during breath holding the heart continues to beat normally, but the breathing stops temporarily. Breath holding is not done on purpose but is also a reflex. It can occur when a child is very upset and has difficulty in ’catching their breath’. Typically, a child may look distressed and go very blue, and then collapse unconscious. This can look like RAS.
Q A consultant has indicated to my daughter that the cause of her fainting is stress and anxiety. Her secondary school is very supportive but is looking to me for direction. A One idea is an Exit Card. This is a card that is recognised by the teaching staff and allows the holder to leave a class at any time should he or she feel in a stressful situation. Not every school will be receptive to this idea, but it has been very successful for some pupils and it is worth discussing.
Q My son’s primary school is reluctant to allow him to go swimming with the class, which is upsetting me.
A Every child should be allowed to learn to swim. If possible you should offer to go along as a parent helper (so your son will not feel embarrassed having his mum there). He should be encouraged to sit on the side of the pool with feet in the water and wet his face, hands and arms to get used to the temperature before gently getting in. This will take away the shock element of the cold water. After that there should be no problem with jumping in, whatever activity it is.
Q My son is going to college in September. Will there be any problems with insurance? A Colleges, schools and playgroups must always be aware of a student or child’s condition and should advise their insurance companies accordingly. Travel insurance companies should be informed of the person’s condition and may require a doctor’s letter to certify they are fit to travel.
STARS Education DVD
STARS Alert Cards
This DVD is the perfect means to ensure that all of the concerns that a school may have are addressed, enabling your child to enjoy and lead a normal school life – the right of every child. Email jenni@stars.org.uk to receive a copy.
Every child should carry one of these cards and family and friends should also have one for reference. Available in packs of 20 for either Syncope or RAS. Send £1 with your name and address, indicating which cards you require to Jenni Cozon at: STARS, PO Box 175, Stratford upon Avon, CV37 8YD NAME:
I suffer with
Reflex Anoxi (this is not conn c Seizures ected to epilepsy and is NOT life threatening) Please make sure I am safe Please put me in the recovery position Please talk quiet ly to me and wait for me to regain conscious ness (normally only 1 or 2 mins ) CALL IMMNAM E: EDIA TELY: SYNCOPE threatening) I suffer with is NOT life to epilepsy and ected If injured or conn is not (this conc erned also call for safe EME am I RGENCY SERV ICES - 999 Please make sure position in the recovery Please put me for me ly to me and wait ) Please talk quiet only 1 or 2 mins ness (normally to regain conscious TELY: CALL IMMEDIA
If injured or
STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD
concerned also
ICES - 999
RGENCY SERV
call for EME
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POTS And Exercise “Do not allow yourself to get deconditioned” I overheard Dr Grubb say to someone when he attended a STARS patient day. Deconditioning means being out of shape, resulting in loss of muscle tone. This will include the heart, therefore the cardiovascular system does not work as efficiently. For some people deconditioning is the cause of their symptoms of orthostatic intolerance but, for many, it’s a whole lot more complex than that! For everyone with POTS, it is known that improving lower leg and core muscle strength can improve symptoms. You may find standing still is the worst thing you can do, as it causes blood to pool in the abdomen and legs. Start to move, fidget or walk and there is an element of improvement, which at least keeps us on our feet a little longer. Movement gets the muscle pumping, helps combat gravity and pushes the blood back up to the heart. Therefore, working on leg and core strength makes this pump system more efficient. Some of you may be thinking “How can I do any exercise when just standing up my heart rate is 140!! – it’s like running a marathon all day, or just walking up a few steps and I am out of puff!!” Every now and then you push yourself and try to do a little more – it’s a great feeling at the time but the post exercising fatigue can be overwhelming and debilitating. For some it is near impossible to get moving until appropriate drug therapy is found to make it possible to get off the sofa. Start with simple leg and core strengthening exercises which can be done seated or lying down at home, such as lower limb weight training. Once you are able to go out, Pilates is great for improving core strength and is also predominantly done lying down. (I suggest attending classes with a reputable teacher who offers beginner lessons, and seeks information on health issues prior to starting). For those who are unable to stand for any length of time, or where syncope is a problem, there are some forms of exercise which can be done from a wheelchair, such as fencing and basketball. Swimming is always good – It’s horizontal, the water keeps you cool, and provides an element of compression. Semi-recumbent cycling or rowing may be useful for lower limb strengthening and improving aerobic capacity. Other successful forms of exercise have been known to include – walking, yoga, tai chi, table tennis, cycling, ice skating, skiing..... the list goes on.
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Have an aim, be that in time or distance, but also be happy to settle for less if needed and not see it as a failure if you have to bail out.
Activities done in short bursts followed by a period of rest work the best, whereas activities involving prolonged standing or sustained position being the hardest. Goals need to be realistic! You won’t be able to do what you used to, so be kind to yourself. Have an aim, be that in time or distance, but also be happy to settle for less if needed and not see it as a failure if you have to bail out. Accept some days will be better than others; if it’s not happening today, try again tomorrow. Remember, if you have not done anything for a while, to start low and slow, aiming for about two to three times a week. Work on increasing intensity and duration slowly (10% every week or two is a useful guide). Know your limits, everyone is different. Push the boundaries too far, and you will know about it. Too strenuous exercise will make symptoms worse, particularly during the days following. But no worries if you do, you will recover! Muscle fatigue and pain can be a problem too; therefore you will need to rest well between bouts of activity to give time for your muscles to recover properly. So get out there and give it a go, be adventurous, and you will be better off for it in the long run. Some local authorities have schemes to help people with medical conditions increase their activity levels, or provide discounted access to local leisure facilities. Discuss it with your GP to see what is available in your area. Lorna Busmer RN BA hons Nurse Practitioner Lorna Busmer has written this article as a patient who has learned to manage this condition sufficiently to continue her career as a nurse practitioner.
@ info@stars.org.uk
➚ www.stars.org.uk
A misdiagnosis which could have proved to be fatal The 7th May 2010 – the day I was finally diagnosed with Long QT Syndrome, fitted with an implantable cardiac defibrillator (ICD) and prescribed beta blockers. My relief was immeasurable because, for 20 years, I had been misdiagnosed with night time epilepsy. Since the age of 17 I suffered from night-time attacks. The first attack happened when I was staying at my friend’s house and she awoke to hear me falling on the floor and thrashing around. My ‘dream’ was interrupted by really loud noises with fast flashing images as though I was falling or getting pulled into something. I thought I was dying but slowly it came to an end and I lapsed in and out of consciousness. I was trying to talk and say “help me”, but I couldn’t speak. My friend’s father was holding me trying to calm me down; they called the doctor but he said he thought it was a panic attack. I didn’t suffer any more attacks for about 6 years; I began to think it was a one off but unfortunately whilst I was in Australia I had a number of attacks. I ended up cracking my head open (twice), cracking my teeth and chewing my lips which would leave them black and ulcerated. I would dread going to sleep and worrying about having another attack. Noises that startle you awake, like the phone ringing or the wind blowing could spark a cardiac arrest. When I returned to the UK I saw a number of neurologists who sent me for various tests (EEGs, MRI Scans, etc.). Nothing showed, but they decided I could be epileptic so I was prescribed epilepsy drugs. I always felt it was not epilepsy and voiced this to the consultants. When I’ve spoken with others who are epileptic, they don’t seem to remember their attacks. Luckily, except for one occasion, I have always had someone there and they have all said that it didn’t look like a typical seizure. I would arch my back, my eyes would roll back and it would look as if I was dead; then I would take a deep breath and start moving again thrashing around and making loud groaning noises as I couldn’t talk. My sister came with me to some of my doctor’s appointments and the specialist said he thought it could be psychological, which was upsetting.
I eventually saw a neurologist who thought it could be an arrhythmia problem; I was referred to cardiology for an ECG which showed I had a slightly long QT interval. An implantable loop recorder (ILR) was fitted to record an attack and show the doctors what was happening to my heart. These devices can remain in place for up to three years and it was two and a half years before I had an attack. Returning to the hospital for them to analyse the result, I was sure there would be no data but instead the nurse went very quiet and said he had to get a doctor. Asking if there was a reading, he confirmed there was, saying “yes, their suspicion of Long QT was correct”. He showed me my heart reading which really shocked me; it was just a load of scribbles. Another nurse came in and said she didn’t want to scare me but that I was a very lucky young lady and that it was as bad as it could be. She said I was lucky to be alive as my heart had been stopping. I was taken to the Coronary Intensive Care Unit where I stayed for a week and had an ICD fitted. Dr Johnston, my cardiologist, did an amazing job and put it in my chest muscle rather than on top so it is not so visible. Unfortunately last January, 8 months after my operation, I was diagnosed with a subclavian thrombosis in my left arm. This was upsetting as I was due to go on a 17 hour flight for a 5 week holiday two days later. Instead, I had to cancel my trip and have Heparin injections on-and-off for a couple of months and I am still taking Warfarin (blood thinners) which may continue for the rest of my life. Since my diagnosis, I am extremely grateful and relieved that I can go to sleep at night knowing that I am not going to die. I am disappointed that I’ve had the blood clot which has meant taking more medication. The specialist has told me he doesn’t want me doing any upper body weights; whilst I am on warfarin, I can continue most other activities as normal. In this regard I’m not sure what the future holds. I think it will take some time to get my head around it completely, as I am still in shock and can’t believe I survived 22 attacks when some people just have one and do not survive. Rebecca Lobb Cornwall STARS information sheet for Long QT Syndrome can be found on the website, www.stars.org.uk
STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD
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Top tips to prevent faints Increase fluid intake Are you managing three pints (1.5-2 litres) of fluid a day? If not, just one extra pint a day can improve low blood pressure. Warning: If you have heart failure or are taking diuretics (water tablets) and there is a good reason that you are not drinking extra water, talk to your doctor first.
Counter Pressure Manoeuvres If you sit for long periods of time, cross and uncross your legs before standing. This will help keep blood pressure up and reduce dizziness when you stand.
Exercise Staying active is really important. Gentle exercise such as walking will help the veins to return blood from the lower body.
Avoid excess carbohydrates Eat 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.
Review medication Low blood pressure can be a side-effect of some medications. Once prescribed, medications should be reviewed annually to ensure they are not the cause of problems.
Check blood pressure Don’t forget, if you experience an unexplained faint, make sure that you make an appointment to have your blood pressure checked, both lying down and then over 3 minutes of standing up.
This poster offers guidance on how to reduce faints caused by low blood pressure. If you have any questions about blood pressure associated syncope, contact STARS
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