e Th uts o k c Bla rust T
AUGUST 2011: ISSUE 35
WORKING TOGETHER WITH INDIVIDUALS, FAMILIES AND MEDICAL PROFESSIONALS TO OFFER SUPPORT AND INFORMATION ON SYNCOPE AND REFLEX ANOXIC SEIZURES
See you at STARS Patient Day?
Experiencing unexplained falls or blackouts ? Dr Glyn Thomas
Dr Matthew Fay
I
t seems like only yesterday when almost 150 STARS members convened at the Hilton Birmingham Metropole for STARS Patient Day 2010! This year our annual Patient Day promises another first-rate conference with an agenda packed with eminent speakers from the medical profession as well as an inspiring patient presentation by one of our members who has not allowed a debilitating condition to stop her from changing career paths or having a baby. First time speakers will include Dr Glyn Thomas, Consultant Electrophysiologist at Bristol Heart Centre, Dr Matthew Fay, GP from Bradford, and flying in from the Autonomic Clinic in Toledo, USA, Beverley Karabin, Associate Professor, College of Nursing, a colleague of Dr Blair Grubb. Many of you have already reserved your places and to confirm these or to register please complete the form on page 2, where you can also view the agenda. Coffee and lunch are included in the fee, there will be
Beverley Karabin One in ten falls
stands to visit during lunchtime and we will also have a dedicated area for those of you who want to meet online friends you have been talking to on the STARS message board. This is a once a year opportunity and if you feel this agenda could help you understand a condition or even answer a concern, then do not miss the day. I quote from a patient who attended last year: “To listen to a cross section of medical experts describing our illness is comforting in a strange way because it reminds me that we are not mad. To hear new ways of treating or controlling our condition means the medical profession has not given up on us”.
in elderly people
are caused by
syncope (fain
ts) Prevention an d treatments are available By investigatin g une
xplained blac kouts approp can be give riate treatme n to prevent nt further falls Helpline: 017 89 www.stars.org 450 564 .uk
Help STARS raise awareness of syncope as a cause of falls endor sed by endo
Registered Charity
No. 1084898
rsed by
© 2011
As part of the Syncope and Falls in the Elderly project, STARS has developed this poster to raise awareness of syncope as a cause of falls in older adults. Can you help promote awareness by taking the poster to your local GP centre, care home or library? (poster located on page 5 of the newsletter). For more information, contact: pippa@stars.org.uk
STARS FUNDRAISING RAFFLE Please will you support STARS by selling the enclosed raffle tickets? Ask your family and friends to buy a ticket and be in with a chance of winning £100, £75 or £50. “You have to be in it to win it!” Closing date for the raffle is 1st December 2011 Winners will be announced 20th December 2011
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
Patient Day Registration Form Sunday 2nd October 2011, 10:00-15:45 at Hilton Birmingham Metropole (by NEC) Diagnosis 10:00 How to communicate with your GP
M Fay N Linker
10:30 Use of ILRs, how they are implanted, and after care 11:00 Break Syncope affects all ages 11:10 Growing up with RAS - crossing over from childhood to adolescence
W Whitehouse
11:35 Syncope as we grow older
M Norton
12:05 Syncope and POTS: How I manage work and my recent experience of pregnancy
A Kiernan
12:20 Lunch Syncope treatment and support 13:20 When is it time to consider a pacemaker in a child?
K McLeod
13:50 POTS - diagnosis and treatment options
G Thomas
14.20 Syncope and POTS: Understanding why people faint and what can be done about it
B Karabin
15:00 Question Time with the professionals T Lobban
15:40 Message of thanks from STARS team 15:45 Close
A full day meeting with refreshments and lunch. This year, STARS is able to offer subsidised rates of £25 per delegate to all STARS subscribers and their carers registering directly through STARS – a discount of 50%. Cost to non-subscribers £50.00 pp. Personal Details
Please tick in the box whether you are: Subscriber
Full Name: Address:
Non-Subscriber
Patient
Town:
Carer / Friend
County:
Vegetarian?
Postcode:
Yes
No
Please record the name of each person attending with you:
Telephone:
Email:
I enclose a cheque payable to STARS for £
/ I enclose a postal order for £
Please send completed registration form to: Jenni Cozon, STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD Tel: +44 (0) 1789 450 564 01789 450564
www.stars.org.uk
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info@stars.org.uk
Heart Rhythm Week 2011: ‘Putting Pulse into Practice’
H
eart Rhythm Week is an annual national event which gives anyone an opportunity to raise awareness of heart rhythm disorders. Awareness, education, parliamentary and fundraising activities take place across the length and breadth of the country. Nearly 4,000 events took place during Heart Rhythm Week 2011. Thank you to all STARS members who took part and made the week the most successful in our history! We are especially grateful to all of you who contacted us to share your patient stories for Heart Rhythm Week. In Wales, there was an excellent article in the Wales Online News. Across the rest of the country….
Across Bolton, pharmacies offered guidance for members of the public to check their pulse and what to do if it’s irregular. Some stores handed out copies of the pulse check guide with all prescriptions. On Thursday 9th June STARS took to Birmingham New Street train station, distributing Know Your Pulse information to more than 3,000 people!
In Poole, Scarborough, Cornwall, Stoke on Trent, Bolton, Castleford, Reading, Birmingham and Bradford and Airedale, patients and carers used their GP surgeries, libraries and workplaces to hand out and display pulse check guides, posters and checklists.
Visit www.knowyourpulse.org for your copy today!
A simple pulse check changed my life…
In hospitals, supermarkets, schools and shopping centres across Bristol, London, Scarborough, Warwickshire, Dundee, Derby and Swindon, pulse check events took place, with healthcare professionals taking thousands of people’s pulses across the week.
Lee-Ann was misdiagnosed with epilepsy at the age of two and put on anti-convulsive drugs for many years. The drugs did not work and the blackouts continued into adult life. By chance, one day a work colleague witnessed one of Lee-Ann’s blackouts and performed a simple pulse check during the attack which revealed a very fast heart rate. Lee-Ann was then referred to see to see a cardiologist and was finally correctly diagnosed with tachycardia.
How can you take part next year? We would welcome your support for Heart Rhythm Week 2012. You can take part by holding an awareness display or event, taking information to your GP surgery, and sharing your patient experience. For more information please contact joannag@stars.org.uk
01789 450564
Nationally, STARS celebrated the launch of the new Know Your Pulse film; a life-saving message in two minutes. This is available for individuals to watch, download and play at GP surgeries and centres in their community.
Lee-Ann’s story highlights the importance of this year’s Heart Rhythm Week campaign Putting Pulse into Practice and promoting pulse checks in GP surgeries.
www.stars.org.uk
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info@stars.org.uk
‘Frequently overlooked and under diagnosed in older people’
S
yncope is four times more common in older adults than in younger people. Moreover, it is frequently overlooked and under diagnosed in older people. It is not uncommon for patients to experience blackouts for a number of years before a diagnosis is achieved because it’s just been assumed that the symptoms are due to ageing and there is not much that can be done. In fact, as Barbara’s letter below shows, most blackouts in older people can be treated effectively.1
STARS reaches out to elderly care homes in the North Following the success of the development of information and advice for older adults with syncope, STARS launched new resources in March to educate staff on syncope in care homes. It has been estimated that as many as 23% of falls in nursing homes are caused by syncope.2 With this in mind, STARS resources were developed for care homes to inform staff on the major causes of syncope in older people, advise on what to do in the event of a resident experiencing a syncopal episode and provide education on the long term preventative advice to reduce syncope.
At the beginning of March, as a pilot region, every care home in the NHS Bradford Airedale area received an information and awareness pack on syncope from STARS and we hope to reach more areas with our information and support over the next few months. 1 Rose Anne Kenny, Professor of Cardiovascular Research, Head of Ageing Programme, Trinity College, Dublin, Heart Podcast 2 Rose Anne Kenny, Wishwa Kapoor ‘Epidemiology and social costs’, The evaluation and treatment of syncope, 2003
Top tips to pre vent faints Increase flu id intake
Are your resid ents managing just one extra pint a day can three pints (six full beakers) improve low bloo of fluid a day? If not, Warning: If a d pressure. resident has hear and there is a t failure or they good reason are taking diure that to talk to their tics (water table own doctor first. they are not drinking extra ts) water, ask your resident
Dear STARS
Counter Pre ssure Mano euvres
Having received my STARS magazine, whic h I read from cover to cover, I thought you might be interested in my experiences of fainting. I star ted to faint at school when I was 12 years old. I continued fainting occasionally until I was in my forties, whe n I was referred to a consultant. I had all the usual tests, ECG, EEG and was dec lared well! In my sixties I was referred to my local hospital and once again had all the tests twice over, ECG, EEG, tilt table and MRI scan. I was told I was bord erline epileptic and put on Lamotrigine. I then joined STARS and was signposted to The Essex Cardiothoracic Centre, Basildon University Hospital to see an electrophysiologist (a heart rhythm expert). I was fitted with a loop recorder and after several more blackouts, I was given my pacemaker. Although I still get some dizzy spells, I no longer pass out completely and the hospital is monitoring my pacemaker to ensure that it is set at the best setting for me.
Exercise Encouraging residents to stay active is really such as walk ing will help the important. Gent veins to retur le exercise n blood from the lower body .
Avoid excess carbohydrates
Offer small mea ls often and avoid meals pasta, pastry). with large quan Low blood pres tities of carb sure can occu assist digestion ohydrates (brea r after , which can lead d, to a drop in bloo meals when the circulation is needed to d pressure when standing up.
Review medic ation
Low blood pres sure can be a side-effect of Once prescribe some medicatio d, ns. ensure they are medications should be revie wed annually not the cause to of the problems .
Check blood pressure
Ensure that any resident who to have their has suffered a blackout/faint blood pressure checked, both receives an appo standing up. lying down and intm then over 3 minu ent tes of
Helpline 017 89 450 564 Registered Chari
This poster offers
guidance on
www.stars.org
ty No. 1084898
how to reduce
.uk
© 2011
faints caused
by low blood
endorsed by
pressure.
How you can get involved with Syncope Awareness: 1. Order a Syncope care home pack to take to your local care home, please contact: pippa@stars.org.uk
I am 71 years old and sincerely hope that my blackouts are now a thing of the past, thanks to the Essex Cardiothoracic Centre and you all at STARS.
2. Display the Falls awareness poster (adjacent) in your local medical centre, hospital or library to raise awareness of STARS and the support we can provide to older people with unexplained falls.
Barbara Overall Essex
01789 450564
If residents have been sitting for and uncross their long periods of time legs before stand reduce dizziness ing. This will help , encourage them to cros when residents s keep blood pres stand up. sure up and
www.stars.org.uk
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info@stars.org.uk
Experiencing unexplained falls or blackouts? One in ten falls in elderly people are caused by syncope (faints)
Prevention and treatments are available By investigating unexplained blackouts appropriate treatment can be given to prevent further falls endorsed by by endorsed
Helpline: 01789 450 564 www.stars.org.uk Registered Charity No. 1084898 © 2011
The Sheffield Teaching Hospitals Postural Orthostatic Tachycardia Syndrome (POTS) Clinic How the clinic was established
well as) lack of concentration, sleep disturbance and bowel problems.
I began my post as Arrhythmia Care Coordinator for the Cardiac Rhythm Management service at the Sheffield Teaching Hospitals NHS Foundation Trust (STHFT) in November 2007. One of the remits of the job was to work with Dr John West, who had been running a syncope/blackouts clinic for a few years, and to try and improve patient care within this service. It was decided that all new referrals would be seen by the Arrhythmia Nurse Specialist, and patient follow up would be delivered by Dr West.
A comprehensive examination then takes place. Tests include a lying and standing blood pressure check (BP), pulse check, plus a BP and pulse check each minute for 5 minutes standing. We also check for venous pooling by observing the colour of the patient’s hands and feet whilst standing, and a Beighton Hypermobility score is performed (as there is a strong link between Joint Hypermobility Syndrome/ Ehlers Danlos syndrome and POTS). Most patients undergo a Tilt Test which helps to inform the diagnosis. This measures blood pressure The first week I undertook the clinic I found myself seeing and pulse as the patient’s position is moved on a tilt table. a patient with Postural Orthostatic Tachycardia Syndrome It is important to rule out other causes of increased heart (POTS). My understanding of the condition was limited to say rate, and often an echocardiogram, 24hr electrocardiogram the least! That evening I went home to do a bit of reading. monitoring, 24hr urine tests and thyroid and adrenal gland Having read the relevant research about this uncommon function tests are required. condition, and visited the foremost experts in the field, it became clear that this was a condition that was not being If, during the clinic visit, we strongly suspect that the patient adequately considered. has POTS we advise on how much fluid should be taken during the day (2-3 litres), and we give advice with regard to When the Cardiac Rhythm Management service started to daily salt intake (3-20 mg). hold regular multi-disciplinary team (MDT) meetings, I became aware from the case discussions that some patients fitted the Once we have established a diagnosis of POTS, we prescribe diagnostic criteria for POTS. The consultants realised that I patients with grade 2 support stockings to improve return of was interested in this condition, and eventually it was decided blood to the heart, and we recommend resistance exercises that we had sufficient patient numbers to warrant a specific for the legs and calves, for the same reason. clinic for them on a monthly basis. The POTS clinic was born! Last but not least, we provide general advice on how to avoid Once the POTS clinics commenced I quickly realised a few episodes when they nearly blackout or faint, and how to things: undertake ‘counter-manoeuvres’ to minimise these episodes. • • •
There are very few centres nationally which specialise in treating patients with this condition A 20 minute appointment slot is insufficient for most patients as many require a lot of support and information Many patients have sought a diagnosis for years and are relieved to finally have some insight into their condition and how to manage it
Consideration is given to use of drugs (such as Fludrocortisone, Midodrine, Ivabradine and Sertriline, however, it is important to understand that the effect of drug therapies for POTS sufferers is often equivocal in clinical trials). We try to ensure that we tailor any medication to the patient’s worst symptoms. We also have access to cognitive behavioural therapy which has been shown to help some patients with POTS.
So, what do we do?
The main ethos of the POTS clinic is to improve patient quality of life. Some patients have a vast improvement in quality of life by simply undertaking lifestyle alterations. Often small changes in many areas produce a significant overall improvement.
When a patient first comes to the clinic, firstly we talk to the patients to get what is called a full clinical history: what symptoms have they had and how has it affected them, as well as a lot of background information to help to establish whether they are likely to have POTS .
We feel the clinic has gone from strength to strength. We are receiving an increasing number of referrals from the palpitations clinic. Whilst Dr West continues in his role as Patients usually describe dizzy episodes with blackouts, lead cardiologist for the service, the POTS clinic is now also palpitations (increased awareness of the heart beating, supported by the cardiologists with an interest in Cardiac often racing), chest pain and shortness of breath. We try to Rhythm Management (Dr Jonathan Sahu, Dr Paul Sheridan and establish if patients also experience other symptoms linked to Dr Robert Bowes). POTS which can include what has been termed ‘brain fog’, (as 01789 450564
www.stars.org.uk
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info@stars.org.uk
We are aware that we have seen some patients, that we have subsequently diagnosed as POTS sufferers, who have undergone prolonged investigation that did not previously lead to a diagnosis, and who have sought referral to us having seen information about the condition and our service on the STARS website.
Our clinic is expanding, and POTS is starting to gain increased recognition at national level. As well as our now well established clinical service we are also hoping to undertake some research in the near future (supported by the University of Sheffield) into the quality of life for POTS patients and their carers.
More recently we have started to receive referrals from clinicians; including Sheffield based GPs, who have referred patients to the clinic as the first port of call. As a result of our expertise and service to other patients,THE POSSIBILITY OF POTS has been highlighted.
A Facebook page ‘POTS UK’ and the website www.potsuk.org have both been established by a group of Sheffield enthusiasts, and provides an invaluable resource for both patients and healthcare professionals alike. I am very proud of the clinic and the work undertaken by all involved.
Sheffield Teaching Hospitals is lucky to have the only Ehlers Our collective mission is to improve the standard of health Danlos Syndrome (EDS) diagnostic service outside of London. and quality of life for the sufferers of this complex, difficult and I contacted Dr Glenda Sobey, consultant in clinical genetics frequently misdiagnosed condition. and visited her clinic. We chatted about POTS and its relationship with EDS and Joint Hypermobility Syndrome. As Melloney Ferrar a result patients are now referred between the two services Arrhythmia Care Coordinator when there are features to suggest EDS / Joint Hypermobility Sheffield and POTS.
Back to school resources for STARS Is your child starting school in September?
STARS Education DVD
T
he Syncope Education DVD has been available since 2010 and has been designed to provide staff in schools with information on how to care for young people who have been diagnosed with syncopal conditions.
ALERT CARDS
The DVD includes three chapters: an introduction to syncope and STARS, advice on managing syncope in school and advice from parents and syncope specialists. Explanations on what syncope is, what happens in the event of a syncopal episode and how to enable a child to participate in all school activities are included.
ORDER YOUR PACK NOW!
S
TARS offers Alert Cards which are the size of a credit card. They provide key information on what to do in the event of an RAS or Syncope attack. The cards work by reassuring family and friends.
The DVD is provided to schools with alert cards, information sheets and care plans to educate schools on the management of syncope, enabling the child to lead and enjoy a normal full school life.
These are perfect for school as they can be carried with you and given to your friends and teachers, providing a discreet way to advise friends what to do in the event of a syncopal episode. The cards cost £1 for a pack of twenty and can be ordered from: Jenni Cozon, STARS, PO Box 175, Stratford Upon Avon, Warwickshire, CV37 8YD.
To request a STARS education pack ready for the start of term, please ask your teacher/school to contact: info@stars.org.uk. 01789 450564
Just send a one pound coin with your name and address, marked RAS or syncope cards. www.stars.org.uk
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info@stars.org.uk
Information and advice for HOT HOLIDAYS
L
ast year we embarked on a family holiday to Malaysia. Not such an unusual occurrence these days! What made this choice of holiday unusual (perhaps irrational is a more appropriate description) is that three of us had acquired a diagnosis of POTS with vasovagal pre-syncope during the previous year. I wanted to show the kids this wonderful country before they decided they were too old to have holidays with parents. Furthermore, although much of our medical care had been superb, accessing some aspects had been quite soul destroying. Planning the holiday proved to be a useful distraction and gave us all something to look forward to. Finally, there was probably an element of foolish stubbornness being able to demonstrate to ourselves that POTS would not stand between us and our travel ambitions.
Two of us deteriorate rapidly if we are hungry, so inclusive breakfast ensured that there was no delay in obtaining food in the mornings. Close proximity to shops and other facilities was considered helpful. A swimming pool or access to the sea to cool down was also essential.
“
regular shade, meals and access to drinks. We soon learned that we could only contemplate one activity each day. We would set off mid morning and return a few hours later to rest or cool off in the outdoor pool. We spent a significant amount of time in our rooms, but used this time to research and plan – or sleep.
‘Would you like me to ask if there is a doctor on board?’ Imagine my embarrassment when I replied ‘I am a doctor’
”
Although we all love street food, if one of us was having a bad day, it was necessary to eat indoors to avoid the heat (even late evenings can be oppressively hot). Some activities, such as visiting outdoor markets, were beyond us. However, the country is geared up to the high temperatures. Shopping malls, museums and craft centres are air conditioned. Not all taxis or buses are-so beware! The holiday planned, the next challenge We also learned, when in Malaysia, do The chalet staff was the journey. For a number of years, as the Malaysians do – hide from the sun I thought I was terrified of flying! How under an umbrella. It works! looked bemused as we wrong I was! Immediately upon take off, disembarked, carrying I would feel a little dizzy and early into On the island we stayed in a basic chalet the flight develop pallor, sweats, shaking, with efficient air conditioning. We were more water than headaches and tummy upset. On one aware when booking that the only luggage. occasion, I was spotted by a flight remaining ones were on a hilltop. The attendant who helpfully enquired ‘Would views were breath-taking; unfortunately, The initial task was extremely boring you like me to ask if there is a doctor so was the climb! We had a number of – to ensure that our travel insurance on board?’ Imagine my embarrassment near syncopes, but by drinking fluids covered our medical problems. At first when I replied ‘I am a doctor’. and taking our time, we survived. Most glance there did not appear to be a people on the speedboat brought problem. However, upon reading the After diagnosis, I noted that the a couple of bottles of water on the fine print, we realised that medical symptoms were considerably reduced journey. We had prearranged that we cover was inadequate. If there are any on treatment and by elevating my legs would stop at a small shop near the jetty outstanding tests, results, follow-up as much as possible during the flight. and buy several gallons to last the week. appointments or regular medication Flight socks help and they also help to The chalet staff looked bemused as we requirements, insurance may not cover prevent DVT (thrombosis). If an empty disembarked, carrying more water than any illness related to that diagnosis. water bottle is taken on a plane, staff luggage. Often insurance companies are unsure will fill it with water as necessary, after of regulations and it is necessary to speak explanation. If space is available, airlines We are contemplating Sri Lanka next... to the underwriter. There is frequently will allow you to lie flat across seats a reluctance to put spoken advice or when symptoms develop . Many airlines L Kavi assurances into writing – something that prohibit lying on the floor for safety I would always recommend obtaining. reasons; they are especially protective To read the full version of ‘Hot Holidays’ of their emergency exits. please visit the Travel Information page of When booking accommodation, there the STARS website: were several criteria that had to be During each day of our holiday, we h t t p : / / w w w. s t a r s . o r g . u k / fulfilled. Air conditioning was mandatory. planned activities carefully, ensuring patient-info/travel-information
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I perused the internet for suitable accommodation, reviewing the hotel or chalet on ‘Trip Advisor’ and similar websites. As we all have exercise intolerance and lifts worsen dizziness, it was helpful to email hotels directly to request low level rooms and check where we could buy bottled drinking water and food.
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01789 450564
www.stars.org.uk
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info@stars.org.uk
Taking Control
M
y first loss of consciousness was in 1983. These episodes continued and in August 1991 I decided to go privately in the hope of finding an answer. But no diagnosis was made.
Information Network. I immediately picked up the telephone and within a matter of months I was trained and was officially an Epilepsy Information Network Volunteer, assisting in Dr O’Donoghue’s clinic at the Queens Medical Centre, Nottingham.
My life changed completely in February 1995. I had another unexplained loss of consciousness with devastating and life changing results. Whilst shopping I fell to the ground and my head got impaled on an industrial cleaning mop, the two exposed metal prongs fractured the skull and penetrated the optical region of the brain.
Volunteering for the National Society of Epilepsy was very rewarding and I felt that my life had purpose again. The only fly in the ointment was that my episodes continued with doctors either increasing my medication or changing it completely.
I was off work for 5 months recovering from my injuries. Physically I looked fine, my hair had started to grow again and I was beginning to feel that I had had a very lucky escape. But my confidence was low; I had lost the vision in the left quadrant of both eyes and trying to work in a busy and demanding bank was proving very difficult. By November 1996 I had retired on medical grounds. These episodes continued to plague me, and each time I would go to my doctor but still no diagnosis could be given. Finally, on a visit to my doctor’s surgery, I had one of my episodes and as a result of this I was referred back to the hospital for tests, this was in March 1998.
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Denise Cooke
...my episodes continued with doctors either increasing my medication or changing it completely.
This continued for eight years until April 2007, when I had yet another episode. This one was particularly nasty and again I was taken to hospital to be patched up and sent home. This time it was different.The doctor came to talk to me and instead of the usual advice to see your GP to review your medication, he wanted me to see Dr O’Donoghue the Epilepsy consultant I did voluntary work for at the Queen’s Medical Centre!
After a very long consultation with Dr O’Donoghue, he decided to start afresh with a complete look at my medical In May 1999 a diagnosis of epilepsy history with the result he recommended was made and medication commenced. that I have another tilt test done as You have all sorts of emotions when a his initial thoughts were that it was diagnosis like this is given to you, but for not epilepsy but malignant vasovagal me it was a relief, I felt that finally I would syncope! be in a position to take control of my life, albeit with the help of medication. Whilst waiting for my tilt test I decided to carry out some research of my own One year later whilst reading the local and this led me to the STARS website. paper I saw an article about epilepsy All their information was really useful, which had been written by the National and I could see why Dr O’Donoghue Society of Epilepsy. Useful information was thinking that maybe I did in fact - something which I found was hard to have vasovagal syncope. I signed up to get hold of - but what caught my eye become a member immediately! I felt was the fact that they were looking that I was now in possession of more for volunteers to help run the Epilepsy information and knew what to expect 01789 450564
www.stars.org.uk
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when I had the tilt test. I also knew what the worst case scenario was……. a pacemaker! I thought that this would never happen to me. However, what happened surprised and shocked me! I had two episodes and was immediately admitted to hospital where a pacemaker was fitted. Thank goodness I had found the STARS website and had been able to read all the information! Dr O’Donoghue explained to me that my episodes were a result of the blood pressure dropping and the heart stopping. The pacemaker would now sense this event and stop me losing consciousness. Gradual withdrawal of anti-epilepsy medication commenced straight away. It is now four and a half years on and I no longer take medication but have regular checkups at the pacemaker clinic. Thanks to Dr O’Donoghue’s diagnosis, I now have a part time job, and am a volunteer for the NSE, as through them I was to meet the consultant who realised I had been misdiagnosed! Life has been challenging but I am now looking forward to a successful career. Denise Cooke, Nottingham info@stars.org.uk
Frequently Asked Questions about ILRs What is an ILR? If a doctor is unable to diagnose the cause of your symptoms with an ECG and a 24 hour monitor, then they may consider an Implantable Loop Recorder (ILR). An ILR is used to monitor heart rhythms for months at a time if the episodes are less frequent than every 30 days. The device can remain in place for up to three years. The ILR can determine whether your fainting is related to a heart rhythm problem.
What happens after the ILR is fitted? A cardiac physiologist will program the ILR to the required settings, this only takes a few minutes. Programming and data retrieval is done by radiofrequency, and this procedure is painless. Before you are discharged the physiologist will explain how and when to use your activator.
How do I capture and record an episode? An ILR can capture your heart’s activities How is it fitted? An ILR is a thin device which is inserted during a blackout. This will allow the just beneath the skin in the chest area. doctor to diagnose or rule out an This procedure is carried out in a day abnormal heart rhythm. To capture and clinic and will take between 15 – 20 record an episode, you are required to minutes. A local anaesthetic is used to place a hand held activator over the ILR. numb a small area of your skin. Once When in place, press the button in order the device has been positioned under for the device to save the information. the skin the wound can then be stitched. This should be done whilst experiencing symptoms or as near to the event as A small dressing will be applied and you possible. will be advised when to remove it. You may be given antibiotics to minimise It is important to carry the activator infection. The wound should be kept with you so that any episode can be clean and dry until it is fully healed, recorded. although it is safe to bathe and shower.
Syncope and Driving
You will then be asked to return to the ECG department of the hospital for the results to be downloaded. You may have received a loop recorder with remote capabilities. This will mean you can send any stored information to your doctor via a phone line from your own home without having to go to hospital. In some instances, these results may produce a diagnosis. If so, the ILR may be removed and appropriate treatment will be given. Removing your ILR Once your heart’s activity has been recorded during your symptoms and the doctor is satisfied that any heartrelated causes are identified or ruled out, the device will be removed. The removal of the ILR is similar to when you had it implanted and can be carried out in a day clinic. To learn more about ILRs, listen to Dr Nick Linker at STARS Patient Day (see page 2)
Manager, anticipating a rather hurried reply; but Jenni could not have been more helpful! She arranged for me to talk to a Professor who is an expert in syncope and RAS, which sometimes display epilepsy like symptoms of jerking of the limbs. I was so relieved when he agreed with me that this was not epilepsy and that this should not stop me from driving; but without seeing me, he felt I could not drive on his say so.
W
e recently received this letter from Victoria MelvilleReed who lives in Sussex. As a mother of four young children she was devastated when she lost her driving licence following one syncope attack. STARS was able to help, with a happy ending.
Jenni then suggested I went to see an electrophysiologist who amazingly said he would see me as early as possible. Thankfully, however, the neurologist at my I just wanted to say a huge thank you for all the local hospital sent me an appointment before I could support you have given me in the past three weeks. be referred. After listening to my husband’s description On March 8th I suffered a fainting episode and a fit of the event and taking a full medical history, he agreed Victoria Melville-Reed after suffering a week long headache. During my trip that I suffer with syncope, this is NOT epilepsy and that to A&E I explained to the doctors that, in the past, I I CAN DRIVE AGAIN!!! I can’t tell you how happy this has faint during vomiting when I have a sick bug. I also appear made me - a mother to four young children and a child minder to to fit during these episodes with my arms and legs jerking. The three other children. I am so grateful to my friends who helped doctor diagnosed me with epilepsy and told me that I couldn’t with picking up and dropping off the children and taking me to drive. He explained I would need to see a neurologist and a the shops etc...! cardiovascular consultant for them to decide whether I could start driving again. Jenni was amazing too - really calm and full of useful information. I couldn’t have got through this without her support and I think A friend of mine told me about a condition called syncope and the what this charity does is fantastic! Thank you so much! STARS charity, so I emailed Jenni , the Support and Information Vicki
Dear STARS
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Military Man Completes Maratona di Roma
F
iona, the new Fundraising Officer for STARS has been speaking to Lee Yarnell who is based in Cyprus. He is godfather to Sophia-May and Isla, whose mother has been a member of STARS for some years since her daughters were diagnosed with RAS. On 20 March 2011, Lee participated in the Maratona Di Roma (Rome Marathon) to raise vital funds for STARS. He completed the marathon in 5hrs 02m 9sec to raise a staggering £1,106.50. Why did you decide to participate in the Rome Marathon on behalf of STARS? STARS has been so supportive to my beautiful goddaughters that I wanted to do something for the charity. STARS has always supported them in whatever activity they do, be it ballet classes, play school or primary school, ensuring the carers are fully informed in case they have an attack. This has made such a difference not just to the quality of their lives but to their whole family.
What did your training consist of? I started slowly, running between 6 and 10km, three times a week and at the weekend between 15 and 30km. The furthest I ran was 32km, but midway through training I caught flu and had to stop for a few weeks.
Congratulations and thank you Lee, STARS really appreciates your hard work and determination.
Congratulations!
Would you participate in another marathon? I thought at the time ‘never again’ but after a few weeks I started to think that I may run one next year in a different country, just to prove to myself I can complete it in under four and a half hours, having been on schedule for a four hour marathon before cramp set in. Any tips for other STARS members looking to fundraise on behalf of STARS? You can never do too much preparation and having someone to help out and bounce ideas off really helps. Fortunately my wife Emma helped to do a lot of the liaising and organising of travel, accommodation and sponsorship.
Was this your first marathon? Yes, my first attempt! How long did you train for? I started training just after Christmas, approximately 3 months before the start; however, I had already completed several half marathons.
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Research and planning are key elements for raising money and getting the most out of the experience. Whatever fundraising you are doing make sure you enjoy it, the more enthusiastic you are, the more people will donate and the easier the training and preparation becomes. But most of all when it comes to sponsorship and fundraising, think outside the box, you will be surprised who is willing to chip in a quid or two!
Nicola McGillivray
Congratulations to Nicola McGillivray! As we go to press, Nicola McGillivray from Scotland is about to be commissioned as a police officer. We are sharing this news because Nicola, who has been a member of STARS for many years, has a pacemaker. When Nicola first applied to the Police Force and told them about this device, their initial reaction was naturally defensive. However, after interviews, medical examinations, letters from doctors, information from STARS and lots of tears of frustration, Nicola will soon be on the beat, doing what she has always wanted. In our next issue we hope Nicola will tell us how she has got on and send us a photograph!
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FUNDRAISING
The Fundraising department really appreciates all donations, no matter how large or small. As the Tesco man says, ‘EVERY LITTLE HELPS’. If you would like your fundraising activity to appear in the next edition of the STARS newsletter, please contact Fiona on 01789 450787 or email her on fiona@stars.org.uk. It might be you who comes under the spotlight!! Freddie, Leigh, Stephen and Chris
Cricket ‘STAR’
Bike to Barca 850 was the total number of miles which separated four final year students from achieving their goal of cycling from London to Barcelona in aid of STARS. Freddie, Leigh, Stephen and Chris departed London on the 9th July with sun, sea and hundreds of miles of cycling in mind. 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 the capital and the most populous city of Catalonia, 14 days later. The boys decided to fundraise on behalf of STARS because one of their cousins has been diagnosed with Postural Tachycardia Syndrome (POTS), a condition of the autonomic system that controls bodily functions. The boys have already managed to raise over £1,500 for STARS. Congratulations Team Barca! A fantastic achievement!
Angie’s daughter, Charlotte, has been diagnosed with POTS. Thank you Advanced Power!
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Helping Hands spent two days clearing out Kearan’s garden, laying a new lawn and putting up bowling nets so he can develop his talent. What a wonderful example of a young man not allowing a physical disability to stop him shining at his favourite sport and a family not wrapping him in cotton wool because of RAS.
If your company supports charities or does match giving, it can really make a difference.
A full account of Bike to Barca will appear in the next STARS newsletter.
Advanced Power Components from Hertfordshire donated £500. STARS were the lucky recipients because Product Manager, Angie Parker, gave our details to their Corporate Responsibility team, who voted for STARS to receive this quarter’s charity donation.
Kearan Tongue-Gibbs, one of STARS young members from Worcestershire, was recently chosen by a national Kearan charity to benefit from their Helping Hands project. Kearan, aged 11, is a keen sportsman despite being diagnosed with RAS and born with no forearms or hands. Spotted by the English Cricket Board as a “gifted and talented” young player, Kearan bowls and bats gripping the ball or bat in the fold of his arm to play.
Anita Kiernan
There are many ways to give, from one off donations, payroll giving or holding events like Anita Kiernan. She has just donated over £130 as a result of her homemade cake and savoury snack sale which she and her team hold once a month and the proceeds go to that month’s chosen charity. Once again, a huge thank you to Anita who is always looking for ways to fundraise for STARS. In April we received another £50 from NHS Salford (where Anita is based) following a dress-down day.
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STARS would like to say a huge THANK YOU to everyone who has donated to the charity this time Karen McLaughlin raised £200 when she ran the Glasgow 10k. Fantastic, Karen. Thank you.
The Leeds office of Simpson Millar Solicitors sent us a cheque for nearly £80 as a result of monies raised from one of their dress down days. STARS was nominated because of the help and support we have given to a colleague’s sister. Thank you very much for supporting us.
Good Samaritan When Phil Gunn became captain of his golf club, he named STARS as his chosen charity. As a result we received a very generous donation from him and his wife Louise. Phil and Louise first contacted STARS in 1995 when their daughter Amie was diagnosed with RAS. Amie is now 17 years and no longer prone to attacks. However, they never forgot the help, support and information that Trudie provided and they put their knowledge to good use recently. Phil tells the story – “Whilst shopping, a young girl fell to the floor displaying classic symptoms of RAS. The mother was very distressed and kept apologising. We explained that her daughter could not help what had happened and that it was a medical condition. She flung her arms around me in relief as she had seen her GP on many occasions but had been told her child was just having a tantrum. We exchanged addresses and she came to visit and I showed her an old video of an attack. I gave her details of STARS and she made contact. I have heard from her since and her daughter has been correctly diagnosed - all through a chance meeting. Hopefully she will go on to help someone else.” Thank you for your generosity to STARS and your kindness to one of our members, who may recognise herself!
Congratulations to Olivia Carrier from King Alfred School, North London Olivia raised nearly £100 for STARS. Together with her friend, Elsa, she held a table top sale and also displayed posters and information sheets to help everyone understand RAS and promote awareness for STARS. Well done Olivia and Elsa, thank you both very much. Olivia and Elsa raising awareness of RAS
Have you considered becoming a STARS subscriber?
We receive very generous but anonymous donations through Charities Aid Foundation. We are always very grateful for these and as we cannot say a personal thank you, we acknowledge your generosity and support on these pages and I do not have to say how much it is appreciated and needed. STARS has also benefited from the generosity of Juliet Browne and Adia Landsman which will help us produce further information sheets for RAS, Syncope and POTS.
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It will cost only £15 per year to become a subscriber and you will: •
Receive a password to the subscribers’ only area on the STARS website
•
Have access to all STARS literature and past copies of the STARS newsletter and e-bulletin
•
Qualify for a 50% discount at the annual STARS Patient Day
•
Have the facility to submit a question to ‘Ask the Experts’
•
Have access to the STARS UK and International database of syncope specialists
To become a STARS subscriber, please complete the blue insert form enclosed within the newsletter and return to: Jenni Cozon, STARS, PO Box 175, Stratford upon Avon, CV37 8YD
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Why not bring this to the attention of your doctor? STARS US would like to welcome Lisa Cartin who is the new Information and Development Officer. Lisa has personal compassion for patients suffering with syncope having known family members who have suffered with the condition. Lisa strives to raise awareness of syncopal conditions because she knows first-hand the havoc and worry it can play to the lives of patients and their families.
www.stars-us.org Lisa Cartin, Information & Development Officer
Heart Rhythm Congress 2nd-5th October 2011 Heart Rhythm Congress is an annual event which brings together all those with an interest in arrhythmias. It offers an educational opportunity for members of the medical, allied professional and industry communities to increase their own and others’ knowledge of heart rhythm disorders, and does this in an open, interactive environment. The congress boasts a full programme of scientific sessions along with training courses, patient group conferences, recorded cases, industry sessions, a patients’ day and DoH and PCT meetings, with a trade exhibition running throughout. With cutting edge technology, ground-breaking medical cases plus the STARS Syncope Symposium. Topics include Blackouts: a 360 degree viewpoint and the Future of Syncope Services from a multi-disciplinary faculty. Visit www.heartrhythmcongress.com for further information and to register.
STARS global outreach
O
ver the past six months STARS has been working closely with Professor of Cardiology Axel Brandes, leading electrophysiologist from Odense, on the development of new information for patients in Denmark. STARS now has twelve information sheets available on a range of syncopal conditions, diagnostic and treatment options improving access to information and support for patients in Denmark. Following the success of the Danish syncope patient information, STARS is preparing for the first Patient Day in Odense, Denmark in November 2011. The meeting will cover such topics as; syncope and diagnostic tests, syncope in the young, the treatment and management of syncope and a patient case study. It will be the first patient meeting held outside of the UK.
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Calling all Patients & Carers: Syncope Patient Survey This short survey has been developed by STARS to gather information on the patient experience of syncope. Please be assured that this is an anonymous survey and your name and details will not be recorded. The resulting data will be used to highlight the accuracy of diagnosis, treatment and care currently experienced by syncope patients globally. If you would prefer to complete this online, please visit www.stars.org.uk If there are any questions that you are unable to answer, please move onto the next question. If you are a carer, please complete on behalf of the patient, please remember to answer the questions as the patient (e.g Question 2, ‘Age category of the person suffering with syncope’ please enter the age of the patient NOT the carer).
Patient
1. Are you a
Carer
7. Do you have a definite diagnosis?
Yes
2. Age category of patient
0-11 19-24 31-40 51-60 71-80
8. What is your diagnosis? (Please tick all boxes that apply)
12-18 25-30 41-50 61-70 81+
3. Gender
Male
Reflex Syncope (incl. Vasovagal Syncope & Neurocardiogenic Syncope) Postural Tachycardia Syndrome (POTS) Inappropriate Sinus Tachycardia (IST) No diagnosis
Female
4. Do you live in the UK?
Yes
No
5. In which region of the UK do you receive care/treatment?
East of England London North West Scotland South West West Midlands
East Midlands North East Northern Ireland South East Wales Yorkshire & the Humber
Reflex Anoxic Seizures (RAS) Pre-syncope Bradycardia Long QT Syndrome Wolf Parkinson White Syndrome (WPW) Tachycardia Other (please specify)
9. How long did it take to receive a diagnosis?
Less than 24 hours 1-4 weeks Up to 1 year 6-10 years Longer (please specify)
6. If you live outside of the UK, in which country do you receive care/treatment?
Africa Canada France India Japan Poland Spain Turkey Other (please specify)
No
Up to one week Up to six months 1-6 years Still awaiting diagnosis
10. What symptoms do you experience? (Please tick all boxes that apply)
Australia China Germany Indonesia New Zealand South America Sweden USA
No symptoms Breathlessness Dizziness Nausea Sweating
Blackouts Chest pains Fatigue Palpitations Other (please specify)
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11. Have you been seen by any of the following healthcare professionals? (Please tick all boxes that apply)
None Cardiologist General Practitioner (GP) Geriatrician (Consultant in Elderly Medicine) Paediatrician
14. Have you received a cardiac device/ procedure? (Please tick all boxes that apply)
Arrhythmia Nurse Electrophysiologist (Heart Rhythm Specialist) Neurologist Paediatric Cardiologist Not sure Other (please specify)
12. Have you had any of the following diagnostic tests? (Please tick all boxes that apply)
No diagnostic tests 24-hr ECG monitor Blood pressure Blood test Echocardiogram Exercise Test EP Study Other (please specify)
12-lead ECG 7-14 day ECG monitor EEG Implantable Loop Recorder (ILR) Pulse Check Tilt Table Test
13. Please indicate what medications you are currently taking for your syncopal condition: (Please tick all boxes that apply)
No medications Beta Blockers Ivabradine Not sure of medications Other (please specify)
Anti-Epileptic Drugs (AEDs) Fludrocortisone Midodrine Octreotide
No device or procedure Cardiac Resynchronisation Therapy- Implantable Cardiac Defibrillator (ICD) Subcutaneous Implantable Cardiac Defibrillator (S-ICD)
Cardiac Resynchronisation Therapy (CRT)Pacemaker Implantable Cardiac Defibrillator (ICD) Implantable Loop Recorder (ILR) Pacemaker
15. Please indicate whether you use or receive any of the following for monitoring or managing your syncopal condition (Please tick all boxes that apply)
None Counter Pressure Manoeuvres (squeezing calf muscles, lying down etc) Pulse checking
Cognitive Behavioural Therapy (CBT) Elasticated stockings Fluid and salt intake Physiological manoeuvres for SVT Other (please specify)
16. Are you satisfied with your current care/ treatment for your syncopal condition?
Yes No No current care/treatment Please return your completed survey to: STARS, PO Box 175, Stratford Upon Avon, Warwickshire, CV37 8YD
New Blackouts iPhone application now available! In March STARS launched the first Blackouts Check iPhone app to help guide patients, family members and doctors to go through questions relating to high-risk causes of blackouts. Any high risk characteristic of the patient gets a “Red Flag” signifying that the patient should seek medical attention. If no Red Flags are found, then at the end of the Check app, the patient gets a “Green Flag”.This means that the blackouts are very likely to be of a simple, harmless type. The app is available for £2.99 from the iTunes store: http://livepage.apple.com/. With each download £1.82 of funds go to the Syncope Trust And Reflex anoxic Seizures (STARS)
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