The uts o k c Bla rust T JULY 2007 : ISSUE 27
WORKING TOGETHER WITH INDIVIDUALS, FAMILIES AND MEDICAL PROFESSIONALS TO OFFER SUPPORT AND INFORMATION ON SYNCOPES AND REFLEX ANOXIC SEIZURES
BREAKING NEWS Manchester Heart Centre recently opened the UK’s first Rapid Access Triage Clinic focused specifically on blackouts. The clinic will provide a multidisciplinary solution to the challenge doctors frequently face when attempting to help someone with unexplained blackouts.
resources which would otherwise be utilised monitoring the status of diagnosis and making further specialist referrals” said Dr Paul Cooper, a Neurologist at Manchester Royal Infirmary, one of the founders of the RABTC.
STARS
Short term consequences such as anxiety, embarrassment and episodes of incontinence during blackouts add to the long-term risk of suddencardiac death as a result of arrhythmia.
Blackouts are one of the first symptoms of an irregular As a model for new patient services nationwide, the rapid- arrhythmia, a condition which causes over 100,000 deaths access blackout triage clinic (RABTC) could lead to savings every year. Early diagnosis and treatment is therefore vital, yet of over £46 million annually by securing rapid and accurate there are fewer than 100 dedicatedheart rhythm specialists in diagnosis for people suffering from unexplained blackouts. the whole country - less than one for every 30 thousand people. Much more importantly, it will prevent hundreds of patients Diagnosis of blackouts is generally made following results from: each year from being denied the specialist attention they need to ensure that they are not misdiagnosed, and that they are seen • A detailed patient history and eye witness descriptions of the blackouts by an expert who can address the underlying cause of the • Electroencephalogram (EEG), which can help exclude epilepsy blackouts. • Electrocardiogram (ECG), which can identify underlying heart Dr Adam Fitzpatrick, the brains behind the new clinic rhythm problems commented, “We’re tremendously excited that this clinic has • If blackouts are sufficiently frequent, a wearable heart opened in Manchester. We hope to set a standard for a vital monitor can record 24 hours of heart rhythm data service that can be copied elsewhere. We will help to ensure • Long term heart rhythm monitoring is used to uncover an accurate diagnosis for people suffering from unexplained intermittent heart problems with a small implantable monitor blackouts, alleviating patient suffering and releasing over £13 known as a’loop recorder’ or ‘Reveal’ million of vital NHS healthcare resources.” Up to 50 percent • Heart rate and rhythm monitoring during induced syncope of the UK population will suffer a blackout at some point with a Tilt Table Test (TTT), although this approach has a during their lifetime. A variety of different conditions can cause high rate of false positive results blackouts, so it can be a long and difficult process to reach an accurate diagnosis of the underlying problem. Blackouts “Rapid access blackouts clinics are a vital resource to help triggered by a cardiovascular cause can appear similar to improve the accurate diagnosis and treatment of blackouts epileptic seizures and it is estimated that approximately and arrhythmias” stated Trudie Lobban, Chief Executive of 28 percent of patients currently diagnosed with epilepsy are STARS, the charity helping people with blackouts. “A wrong diagnosis can have a disruptive effect on people’s life in misdiagnosed at a cost of £46 million. addition to preventing access to appropriate treatment for Within the Rapid Access Blackout Clinic, a multidisciplinary blackouts, which will continue to occur with possible severe team drawn from cardiology, geriatrics, neurology, paediatrics consequences.” and psychology will work together at the Manchester Heart Centre, fast-tracking diagnosis and the provision of appropriate The first Rapid Access Blackout Clinic has been introduced following new guidelines, published in 2005 in the National care to patients. Service Framework for Coronary Heart disease, which called for “The advent of Rapid Access Blackout Clinics will help to the introduction of such clinics for patients with arrhythmias improve patient care, ensuring that cardiac, neurological, and blackouts. geriatric, paediatric and psychological evaluation is undertaken People with blackouts often report injuries from their to determine the cause of blackouts. The combination of sudden falls, which occur in up to 30 percent of patients disciplines within one clinic will also release vital GP older than 65 and cost the NHS about £1 billion every year.
Freephone 0800 0286362 +44 1789 450564 www.stars.org.uk trudie@stars.org.uk
“The Rapid Access Blackout Clinic heralds a new way in which blackouts will be diagnosed and treated, optimising patient care” stated Dr Fitzpatrick.
PO Box 175 Stratford Upon Avon Warwickshire CV37 8YD UK
STARS conference at the Heart Rhythm Congress 2007 to register please visit www.heartrhythm.org.uk 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 Registered Charity No: 1084898
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From Trudie Lobban, CEO STARS Since the beginning of this year, we have many new faces in the office. I am always being told by you that you like to be able to put a face to a name so let me introduce you.
NEW PATRON FOR STARS I am delighted to announce that Dr Wouter Weiling from the Netherlands has agreed to become a Patron of STARS. Wouter is already a member of the STARS Medical Advisory Committee (STARS MAC) and is world famous for his work and interest in syncope. His professional memberships include the American Autonomic Society and the European Federation Autonomic Societies. Dr Weiling is a regular attendee at STARS conferences and has provided invaluable advice on numerous occasions. He joins our impressive list of Patrons, who include Prof. John Stephenson, Dr Adam Fitzpatrick, Prof Rose Anne Kenny, Prof Christopher Mathias, Dr William Whitehouse, Sir Roger Moore, Twiggy Lawson and John Burton Race
NEW DIRECTOR OF DEVELOPMENT STARS had been looking for a Director of Development for some time so the appointment of Doug Henderson was welcomed by everyone! Having held a similar post in a national charity he brings a wealth of experience to STARS. ~ Doug ~ My partner and I have a 16 month old son called Jake and joining STARS has evoked memories of my late father who suffered with atrial fibrillation. I look forward to my time with STARS and would like to hear from anyone who has any ideas, thoughts, or wishes to receive some guidance and support with their fundraising efforts. doug.henderson@stars.org.uk
NEW EDUCATION TEAM I am so excited to be able to reveal that STARS now has its own Education team of Laura Nelson and Jo Jerrome. They have a wealth of experience between them and will be on hand to answer all your queries regarding school and related activities as well as advising teachers and education personnel. ~ Laura ~ Many of you will recognise my name by now as I constantly fill your inboxes with messages about the Education project! For those of you who do not, I joined STARS in October 2006 to do work experience following the completion of my BA at Durham University…….. and I am still here!! I have recently taken on the role of Project & Campaigns Co-ordinator, so I am in pursuit of ideas as to how we can raise further awareness and educate on syncope and RAS! You can reach me in the STARS office or at education@stars.org.uk ~ Jo ~ Hi, my name is Jo, and I have just joined the team! I live quite a busy life – I am a full time mum, a part time teacher, and a part time child minder. Drawing from all this experience I have now been conscripted to STARS. Here I am working with Laura on the Education web site (more about this later in the newsletter)! I hope the site proves to be both interesting and useful for you. Let me know! jo@stars.org.uk Welcome to you all, and if the beginning of 2007 is anything to go by, the second half of this year will be just as busy but always enjoyable, I hope! Have a great Summer everybody and I hope to see you at the Congress.
STARS conference at the Heart Rhythm Congress 2007 to register please visit www.heartrhythm.org.uk 2
Coming up in this issue.... SHINE A LIGHT ON EDUCATION STARS is pleased to introduce its new educational web-site. Online information, downloadable lesson plans, sample care plans and support materials designed for educators and families managing the care and education of young people with syncope. This new site introduces Sammy Star, hosts a blog, a moderated message board and offers information and advice for those who have been diagnosed with syncope or RAS.
Shine a Light on Education
page 4
Blackout Checklist
page 6
Midrodine
page 7
Rona Saunder’s Story and Silver Wedding for STARS
page 8
Naomi Fear’s Story
page 10
Fundraising, Ryan Oliver’s Story & Charos Duff’s Story, Up and Coming Launches and Thank You
page 11
Sarah Levete-Newell’s Story
page 15
Joel Reid Story
page 16
STARS Syncope Message Board -
Cheryl Maher’s Story
page 17
Tucked away in the Subscribers Only area of the STARS website is the Syncope Message Board. It has been buzzing recently and one of the stalwarts, Joan, wrote this:
STARS Youth Syncope Message Board and Blackouts, syncope and epilepsy - getting the right diagnosis.
“One of the best kept secrets of the STARS website is the message board. Introduced last June we got off to a good start then we dipped at the beginning of the year but glad to say that now if our (typing) fingers were plugged into the national grid we could light up the north-east for an hour, our board is turbo charged!! We have more than sixty members of which about a quarter contribute regularly.
Q & A with Dr Adam Fitzpatrick
page 20
Congratulations Nigel & Mandy Warren
page 22
Arrhythmia Awareness Week 2007
page 23
Heart Ryhtym Congress 2007
page 24
So whether you are a teacher supporting a child with syncope or RAS, a pupil wondering how to tell your friends or you simply want to talk to others, why not visit
www.education.stars.org.uk
If you can help distribute educational flyers please contact jo@stars.org.uk for a supply.
We’re all syncope sufferers or carers, no medical personnel are allowed to view the board, so if we feel a doctor (no names are mentioned of course) has a poor ‘bedside manner’, we say so.
REFLEX ANOXIC SEIZURES is a type of arrhythmia (heart rhythm disorder) occurring mainly in young children but can occur at any age. The sudden shock of pain, however slight, or indeed any unexpected stimuli, causes the heart and breathing to stop, the eyes to roll up into the head, the complexion to become deathly white, the jaw to clench and the body to stiffen often with legs and arms jerking. After 30 seconds or so the body relaxes and the heart and breathing restart. The sufferer may remain unconscious for one or two minutes or for well over an hour. RAS is often misdiagnosed as breath-holding or more seriously as epilepsy.
A few members have had to endure difficult procedures lately and we’ve supported each other then when our turn comes we’ll be supported. I have a Reveal implant in at the minute and I may have an EP study done soon. Trudie and Jenni will send me lots of information but it is with my friends on the board that I will share my concerns because none of us is medically trained so It’s OK if we don’t know the proper terminology - we still manage to make ourselves understood! If there is one message I’d like to get across it’s this - YOU are the person managing the condition, never let the condition manage you! I really look forward to hearing from you soon via the Board!”
SYNCOPE (pron: sin-co-pee), is a result of the temporary cutting off of the supply of oxygenated blood to the brain. The mechanism of the syncope in susceptible individualsincludes reflex cardiac standstill (always reversible) commonly following a surprising bump to the head or elsewhere. Recurrent syncope is perhaps one of the most challenging and, at the same time, most frustrating problems that is encountered in clinical practice.
Below is a list of STARS National raffle winners. Mrs F Newne, Mr S McGillivray, Mr M Goodram, Mr P Carter, Mrs F McClay, Mrs M Witt, Ms S Brooks, Joel Reid Congratulations and very well done to all.
Joan Laamaim Newcastle upon Tyne
+44 1789 450564
pages 18
trudie@stars.org.uk
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www.stars.org.uk
STARS exciting new web site has information for all ages – its key role is to offer help and advice to parents, careers and all educational establishments. If your child is about to start nursery, a new school, or if you as a young person, are concerned about embarking on further education, then the ‘Shine A light On Education‛ web site can offer support and advice. Many pages are specifically for schools and educational establishments! We are now able to offer on line advice and information for all educational establishments. There are lesson plans (linked to the National Curriculum) aimed at helping to extend understanding and managing of RAS and Syncope. From September schools, nurseries and educational centres will be able to request a free training session. This will be from a trained volunteer presenter who will visit individual schools and give information and advice on the needs and management of children with RAS and Syncope. Spread the word - the education web pages are now alive and kicking! Go to www.education.stars.org.uk and follow the link The ‘Shine A light On Education‛ hopes to offer support and advice – as well as continue to raise awareness of RAS and Syncope. We are constantly sent questions – many of which will be posted on the new website, www.education.stars.org.uk. If you have any concerns or queries do contact us and we will do our best to help.
STARS conference at the Heart Rhythm Congress 2007 to register please visit www.heartrhythm.org.uk 4
Here are a few replies to the questions already asked: My class is planning a trip, and I‛m not sure whether I‛ll be allowed to go? Can I? Yes, if you are able to regularly attend school then there is no reason why you shouldn‛t be able to join in. The key to this being successful is being truthful. Make sure that all adults – and friends - know about you condition, possible triggers and what to do if you have an attack. Why not print off the three Fact Sheets from the web site, and carry Fact Sheet 3 with you that way if you should have an attack everyone will know what to do to look after you. As an equally good (and internationally recognised!) alternative, you could wear a Medic Alert necklace or bracelet, which holds key medical information about you.
Do you always recover from a Syncopal attack? Yes, during a typical attack you will always recover, although you may feel very tired and upset afterwards. You may also want to sleep and remain quiet as many report that everything sounds very loud afterwards.
I‛m 14 and would like to look for a part time weekend job. I have RAS, will this stop me? No, but you need to be sensible. Firstly, talk to your family, as there are many different ‘Saturday‛ jobs, which would be fine. It is important that you inform your employer of your medical condition –this way you protect yourself and help them. Give them as much information as possible including what to do if you have an attack. You‛ll also show them how responsible you are by doing this! Good luck and if anyone refuses to employ you because of your medical condition – don‛t give up – let us know and we will help because you should not be discriminated against.
I‛m hoping to apply for a university place but have heard my medical condition may prevent me being accepted. Is this true? No! All colleges and universities welcome suitably experienced and qualified students, the only extra requirement (for your own protection) that you might be asked to submit, is a care plan. There are samples of these on the web site, www.education.stars.org.uk that you can adapt to suit your own condition. So, start applying and let us know how you get on!
My friend has RAS I‛ve never seen an attack and am scared because I‛m not sure what I‛d do. Firstly, stop worrying! Next, click on www.education.stars.org.uk and look up the ‘Fact Sheets‛. These help to explain what the triggers for an attack can be and what happens to your friend during the attack. Fact Sheet 3 tells you in five simple steps, what to do if your friend has an attack while with you. It is also a good idea to talk about this with your friend – and may be both your parents. Sharing your concerns and talking through the information, will help both of you. As every person is different, there may even be certain things that you could do in the event of an attack, which help your friend feel better.
Hi, I’m Sammy Star, and I’m one of the many Stars on our new education website www.education.stars.org.uk and follow the link!. Click on and look out for me; as well as my story you’ll find activity pages, comments from other young people with RAS and Syncope and advice from leading experts. There’s also a Notice Board, the Blog, and some great fund raising ideas to get stuck into! Most importantly though, I want to hear from you, so go on, have a look, and let me know what you think!
+44 1789 450564
trudie@stars.org.uk
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www.stars.org.uk
The Blackouts Checklist The first time you experience a blackout is very frightening, both for you and anyone who is with you. You will not remember what happened and whoever witnessed it will only have a hazy recollection. Initially you go to see your GP or even to A & E at your local hospital. Often the doctor will be at a loss to determine the cause and will advise you that it is probably a ‘one off’ and to go home until you have another one….. Blackouts are tricky to diagnose and doctors find it difficult to decide which pathway to follow when referring you to a specialist – neurology or cardiology? If the wrong one is chosen, it can have distressing results. Records show that 30% of people diagnosed with epilepsy are misdiagnosed and could be suffering with syncope. This is frightening. With this in mind, we started to talk to doctors and patients to try and ascertain what was needed to help prevent these pitfalls, avoid unnecessary medication being prescribed, and reduce the level of frustration and fear that is felt by a patient without a diagnosis. As a result The Blackouts Checklist was born! It was prepared with the guidance of the Medical Advisory Committee of STARS and to date there have been over 5000 hits on the STARS website, www.stars.org.uk. The STARS helpline has dealt with over 1000 requests for copies.
IT HAS BEEN WRITTEN TO HELP YOU AND YOUR DOCTOR REACH THE CORRECT DIAGNOSIS. REFERRAL TO A CARDIOLOGIST What happens once you and your doctor have decided which medical pathway to follow? One route is for your doctor to refer you to an Electrophysiologist, a cardiologist who has specialised in the ‘electrical ‘ side of the heart. There are only 70 of these experts in the UK. If you would like to be signposted to one of these experts then please contact us and we will try to help.
The uts cko Bla rust T “working together with individuals, families and medical professionals to offer support and information on syncope and reflex anoxic seizures”
The Blackouts Checklist is now available in the following languages and can be downloaded from the Website Danish
Dutch
French
German
Italian
Norwegian
Spanish
Swedish
THE BLACKOUTS CHECKLIST HELPING YOU AND YOUR DOCTOR REACH THE CORRECT DIAGNOSIS
DO YOU OR YOUR CHILDREN SUFFER FROM UNEXPLAINED LOSS OF CONSCIOUSNESS (BLACKOUTS)?
www.stars.org.uk PO Box 175 Stratford-upon-Avon Warwickshire CV37 8YD Tel: +44 (0) 1789 450 564 Fax: +44 (0) 1789 450 682 Email: trudie@stars.org.uk endorsed by
Registered Charity No. 1084898 ©2007
STARS conference at the Heart Rhythm Congress 2007 to register please visit www.heartrhythm.org.uk 6
Midodrine “POTS won’t win, I will” is how one sufferer reacted to her diagnosis. “I treat it as a challenge not a hurdle” said another when told she had vasovagal syncope. Both sufferers are the victims of orthostatic hypotension. Orthostatic hypotension (postural) is an undue drop in blood pressure that occurs after getting up from a lying or a siting position. The fall in blood pressure causes a reduced blood supply to the brain, which results in light-headedness, falling and blackouts. In recent years a drug has come onto the market, MIDODRINE, which can safely raise the blood pressure of sufferers from this disorder. It works by constricting the blood vessels, which reduces blood pooling in the legs and increases blood pressure. Midodrine reacts within one hour of taking a dose and allows the sufferer to lead a relatively normal life, without being dizzy or light-headed, for about three to four hours. It is normally taken three times a day but not after 6pm. Midodrine, which is approved by the US Food and Drug Administration, can only be prescribed by specialists in the autonomic system or certain heart rhythm experts (electrophysiologist). It is not recommended for children. Much patience is required in the treatment of orthostatic hypotension as medications that help some may have no effect for others and in some cases make matters worse. Midodrine is one of the more successful drugs and has few side-effects. Itching, tingling and feeling cold are some of the adverse reactions but changing the dosage can easily control these. Midodrine can significantly improve the quality of life for sufferers of POTS and Vasovagal Syncope.
MEDICALERT FOUNDATION
SUBSCRIPTIONS WERE DUE ON 1 JANUARY 07
MedicAlert is the only non-profit making, registered charity providing a life-saving identification system for individuals with hidden medical conditions and allergies.
Only £15 / $25 / E25 If your subscription is overdue, please
We are regularly asked for a leaflet and what wording to use.
remember that we rely on donations and subscriptions to maintain the level of care and
We suggest the following: • Reflex Anoxic Seizure/Vasovagal Syncope • Care with anaesthesia • Call for essential details
support that STARS currently provides. A STARS subscriber receives a password that gives access to the Syncope message board and is able to
For further information on this charity refer to www.medicalert.org.uk
+44 1789 450564
download all our leaflets whenever required.
trudie@stars.org.uk
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www.stars.org.uk
“I wanted to deny I had this condition….”
Looking back on my childhood and early adulthood I probably suffered a couple of similar episodes although nothing to the extremes that I have had over the last two years. However, the first attack with severe chest pains came one evening whilst I was tidying up after a youth club in my church. I can’t remember doing anything different or out of the ordinary but had prior warning before I finally passed out. I don’t remember too much of the attack but just put it down to tiredness or a ‘one off’ and went home to bed and carried on as normal the next morning. Little did I know that this was going to be the start of a roller coaster ride! During the following week, I had another couple of similar attacks, so decided to make an appointment with my local GP. He said that it was probably heartburn, prescribed an over the counter indigestion remedy and told me to return within the next two weeks if the attacks persisted. The attacks worsened so I went back to my GP who then said the chest pains were probably due to a muscular problem and he didn’t seem overly worried about the periods of blackouts but he did agree to send me for an ECG. A couple of weeks later my father, who was speaking to a consultant cardiologist colleague, explained my situation and I was asked to come into his Infirmary as a matter of urgency. The hospital did several tests and I was given a 24-hour heart monitor for a week as they thought I might have a life threatening condition. After going through many different tests I was diagnosed as having Atria Ventricular Re-entrant Tachycardia and then referred to the outpatient department. The Cardiologist there did not appear to be convinced of this diagnosis and agreed to do a tilt table test. This was an extremely horrible and very frightening experience for me. A few days later I was diagnosed with Neurocardiogenic Syncope. I thought, at last a diagnosis, maybe they could now do something to make the attacks stop!
As many of you are aware this is simply not the case, I have tried several different types of medication, none of which block out the attacks completely. I have had a number of trips to my local A and E department and given my family a few frights! It is difficult when no one really knows much about the condition! I discussed the option of a pacemaker. However it seemed that this would not lower the number of attacks I was having as it would have further complications and more complex difficulties with the way my blood pressure and heart rate work. At first I wanted to deny that I had this condition that no one had ever heard of! I tried to carry on as normal and pretend that it was not there, still being as fit and active as I always was, but I have learned to deal with that and now am much more sensible with it, knowing my own limitations or others telling them to me!! It is still very frustrating at times and I always get very embarrassed when there are people there who don’t know me very well.
Its hard to tell at times what triggers an attack but they tend to come on more frequently if I am tired or stressed or in a warm room/ area! Strobe lighting and other flashing lights even Christmas tree lights) also seem to have an effect on me. I do particularly hate it if I am stuck in an area where there are a lot of people and I can’t remove myself quickly. If I feel over crowded and get more fearful of an attack happening, I think I may even send myself into one.
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Put ut it down to tiredness or a ‘one off ’
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My name is Rona, I am 21 years old, a Primary School Teacher, and I was diagnosed with Neurocardiogenic syncope two years ago.The attacks started in February 2005, totally out of the blue and a diagnosis was made a few months later.
I suppose that I am fortunate to have some prior warning of attacks happening. When an attack is coming on it feels as though people are very far away as their voices seem distant. My vision can go funny although I do try to get something to focus on and my right arm can jerk. I feel as though my reactions are delayed and I seem to lose my balance but always manage to sit or lie down before I go into a full-blown attack. I always feel the need to hold onto something really tightly and knowing someone is there is always reassuring.
STARS conference at the Heart Rhythm Congress 2007 to register please visit www.heartrhythm.org.uk 8
lie down before I go into a full-blown attack. Sometimes I find it difficult to breathe and I am unable to speak. This can be the most frustrating part.
I have good spells and bad spells now but am much more able to manage the attacks. They are much less frequent and I have plenty of prior warning and now often have ‘near misses’ I can handle them by doing some physio to offset the attacks and also taking medication. My friends are very good at spotting when an attack is coming on and they have all learned to deal with it along with me!!
The worst part is coming back into consciousness and I usually feel very tired after an attack. However, it can be very difficult to remember what happens during or after it.
As everyone knows this is an extremely difficult condition to deal with but with all the love and support of my family and friends I have managed to understand it and raise awareness for others! I think the work that STARS does is fanastic and it’s great to know that there are people out there who are shining light on blackouts.
It was great to see Shelley’s article in the Daily Mail and I immediately got in touch with STARS. It really has helped me to know that there are others who suffer from similar attacks and I have received lots of useful tips and advice to cope with this. My friend Helen ran a half marathon to raise money for STARS, as she knows the help it has given me and wants to help raise awareness for others.
Rona Saunders Glasgow
Silver Wedding for STARS We recently celebrated our Silver Wedding Anniversary with a ceilidh for family and friends. We requested that no personal gifts be brought but rather that people may wish to make a donation instead to STARS to help further support and research into this condition. We received helpful information/ literature from STARS, which we made into banners for the walls of the venue. We also decorated the room with coloured stars to promote the work of STARS and draw peoples’ attention to what is being done to help those with this debilitating illness. A silver collecting box was placed on a suitably decorated table in the middle of the hall and the sum of £1700 was raised on the night. The evening was all the more special because our daughter, Rona, who suffers from neurocardiogenic syncope, gave a speech and led the good wishes of the assembled guests. This was a particularly significant moment for us all as she ably demonstrated that she seeks to manage the condition and lead her life as strongly as she can with the help and support she has received from STARS and her medical consultant. This was our way of seeking to help STARS carry on the good work that is being done. Keith and Isabel Saunders , Glasgow +44 1789 450564
trudie@stars.org.uk
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www.stars.org.uk
Teenager has an Implantable Loop Recorder I’m 15 years old and have suffered with RAS since I was two. I’m a very confident and sociable teenager who actually enjoys school! I’ve been nominated for head girl and receive all the support I need. I think I’m very lucky not to have been bullied or made to feel different because of my seizures. I have lots of friends and am always organizing shopping trips to town with them. Recently I’ve become a dance leader and compete in competitions, and I’m also a member of the Weymouth and Portland Youth Council. Having RAS has never stopped me from doing anything. I swim, dance and go to the youth club. I used to go horse riding but gave that up in favour of my dancing. My mum and dad have always supported and encouraged me; my Nan does all the worrying for us! I had never thought of what life would be like with seizures as a young adult. I had hoped that I might have grown out of them, as I hadn’t had an attack for two years. Unfortunately, I was wrong and the seizures have returned. It was New Year’s Eve and I was staying at my friend’s house for a sleepover. I slipped, hurt myself and blacked out. I came round to find my friends very shocked, but later we all laughed about it.
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I was awake all the way through the procedure.
The following June I had another three attacks at school. This time I didn’t think it was so funny, and after one particular
episode I felt so ill for several days that I asked mum if I could go to a specialist. I wanted to see a specialist in Manchester because that’s where my mum went and he was really nice to her, but we decided to see someone more local first. The doctor at Bournemouth was really nice and he said he would do all he could to help find out why it was happening. I had lots of tests and monitors but not a tilt table test, which I didn’t want to have! This May I was fitted with an implantable loop recorder (ILR) so that the doctors can find out for sure what is causing my seizures. The operation was a bit uncomfortable because I am skinny and I didn’t have much loose skin. Ali the nurse came in with me while I had it done and held my hand because I was awake all the way through the procedure. There was a technician advising and he was really nice and so was Ali - she said I was very brave. I came home later that day, a little bit sore but ok, and the following day I went into school for my exams! I’m now back to normal apart from a little scar on my left side, just below my collarbone. I’ve even started dancing again, and on the Saturday after the ILR was fitted I competed in a dance competition and won! I hope that lots more teenagers who are having seizures will find the courage to have a ILR fitted so the doctors can find out why they are having them. Perhaps then the medical profession might be able to find a cure for us in the future.
STARS conference at the Heart Rhythm Congress 2007 to register please visit www.heartrhythm.org.uk 10
Naomi Fear Dorset
FORTHCOMING EVENTS STARS supporters will be joining the tens of thousands of individuals from Great Britain and from around the world take part in the totally unrivalled experience. The world’s greatest race route takes its competitors through the heart of London – on roads closed to traffic – passing many of the world’s most famous historic and iconic landmarks. Have you seen the STARS runners in the event!
All STARS asks is that unwanted items currently lying around your homes are put up for sale with some or all of the proceeds going towards one of the following targets: Target 1
The Education Project ‘Shine a Light on Education’
The Aim - To educate those responsible for young syncope sufferers in their place of education so that their condition and needs are properly understood, and as a result, they receive the maximum support that they require. Target 2
First Point Contact Volunteer Network
The Aim - The STARS Volunteering Network is currently made up of project specific volunteers who have been recruited to support individual campaigns and projects. The aim of these networks is to provide a number of elements, which directly or in directly help STARS deliver its aims and objectives. You choose where the money you make from eBay is spent. STARS want to maximise your say in our work.
WE THOUGHT THIS WAS A GREAT FUNDRAISING IDEA – Debbie and Daniel Ambler entered a ‘Banger Rally’, spending no more than £200 on a car, they drove from Yorkshire to the South of France, raising funds for STARS, - whilst having amazing fun by the looks of it!
+44 1789 450564
trudie@stars.org.uk
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www.stars.org.uk
RYAN’S STORY (Ryan is aged 12 years. He has written this in the hope it will encourage others of any age to approach companies, get out amongst the public to raise funds and increase awareness of this distressing condition) My brother Bradley, who is four and a half years old, suffers with Reflex Anoxic Seizures (RAS). He first suffered with this when he was only a few weeks old. My mum has syncope and she has had it since she was 13 years old. They were both misdiagnosed with epilepsy and my mum was even put on tablets for epileptic fits. It wasn’t until Bradley was diagnosed about 3 years ago in a hospital at Belfast that mum understood her condition. After that I wanted to help people be more aware of these conditions so I decided to start raising money for STARS STARS. My Mum helped me approach various companies. First of all I handed out baskets for two hours at Asda and I raised a lot of money that day - whether the December seasonal joy was encouraging people to dig deeper, I don’t know! Next, I did Sainsbury’s for three hours, packing bags for people, which I found interesting because I saw how different people like things organised. Some don’t really care and others just put it in the boot of their car - loose! Mum & Nan now have a top bag packer when they go shopping! Most recently I stood at the main Entrance of Trago Mills, and they have very kindly said I can return every eight weeks for three hours. I didn’t collect as much on this occasion as I did previously at other stores. However, I was able to answer people’s questions and raise awareness as I had more free time to explain. When Bradley first started having Reflex Anoxic Seizures I used to be very frightened and freeze or I’d go daft, and scream and cry. Mum would sit me down and explain, and tell me not to be frightened, as it would all be OK. I was scared I’d lose my brother. I still hope he will grow out of RAS like the doctors told Mum, but at the moment there is no sign of that. The difference is that Bradley is more aware of what is happening. He doesn’t like it when a seizure has spoilt what he is doing. The hot weather is troubling him at the moment. Bradley is very out going, extremely active and the best brother I could ask for! Ryan Oliver Devon
CHARO’S STAND I first thought of this fundraising idea as Pfizer are very good at supporting charity work and I knew it would be a good idea working in an environment within the pharmaceutical industry.... I’m a telecommunications co-ordinator and have been working at Pfizer for seven years. When I first started working there, I thought it might be a problem working in front of a PC everyday, having been diagnosed with epilepsy. Thankfully, I was diagnosed correctly last year with reflex syncope and can work without having to worry. Even so, I thought I would let everyone know about my condition and what to expect if I hurt myself, which is what triggers my seizures. I have also invested in a Medic Alert tag, just in case. I can imagine how frightening it is for someone that has never experienced someone having a seizure. If they know what to do, it helps them and me! And I owe a HUGE THANKS to STARS for helping me understand my condition in a way that affects my whole life for the best! THANKS!!!
Charo Duff Kent Ken
STARS conference at the Heart Rhythm Congress 2007 to register please visit www.heartrhythm.org.uk 12
Up & Coming Launches PAYROLL GIVING Payroll Giving is a totally tax efficient method of giving to STARS, as the donation includes the tax that would otherwise have been deducted from pay. So instead of the tax going to the Treasury it will go to the selected charity. If you were to donate £10 per month to STARS from your pay under our Payroll Giving Scheme, your gift will only cost you £7.80. The Inland Revenue gives us the extra £2.20 (At the basic rate of taxation).
STARS TRIBUTE FUND ‘A Special Way to Support.’ In recent years, an increasing number of people have asked us about ways to remember or celebrate the life of someone special and keep their spirit alive, by making gifts in their name to support our work. These funds have been set up to not only remember someone special who has sadly passed away but a fund can also be set up to celebrate the continuing life of someone special. You will be able to start Tribute Funds in late Autumn 2007.
WILLS & LEGACIES Making a Will is the best way to care for your loved ones in the future. But these days many people also like to leave something to a charity they support. A charity like STARS. An up-to-date Will is the only way to guarantee that your wishes are carried out after you pass away, and that the people you care about get the gifts you intended for them. The website & Information pack for Wills and Legacies will be available from late autumn.
+44 1789 450564
trudie@stars.org.uk
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Thank You! STARS would like to thank Sandy Enfield who ran the Great South Run in October 2006 and raised a fantastic £140.00 for STARS STARS would like to take the opportunity to thank everyone who has supported us with funding. Whether that was through the BBC Radio 4 Appeal, presented by Sir Roger Moore, KBE, a bake sale, or trekking through the Himalayas we Thank you all. Your support through the years has allowed STARS to delivery its’ important services and we hope that you will continue to support us in the future.
STARS conference at the Heart Rhythm Congress 2007 to register please visit www.heartrhythm.org.uk 14
Now a healthy 6 year old – thanks to a pacemaker I can still see when Eliza ‘goes off’ but I don’t worry about it now, knowing that when her heartbeat drops to a certain level, her pacemaker takes over. We have to be watchful if Eliza is unwell without obvious cause, as this could indicate an infection around the pacemaker.
Eliza is now a healthy 6 year-old – thanks to her pacemaker. When Eliza was a baby, she would ‘go off’ – looking grey, slightly stiff and yelping for breath. As a tiny baby she had also slept for long periods (without waking to feed) although this was never linked directly to her later diagnosis.
Within a year the pacemaker will need a new battery and in a few years it will need new leads. The consultant fitted the pacemaker with lengthy loops to ensure they would accommodate growth from toddler to young girl.
The GP reassured me she was healthy but I knew there was something wrong when, in the middle of a children’s birthday party, Eliza became upset and suddenly blacked out, going completely still and stiff and a ghastly shade of grey. She remained like this for almost a minute and only came round when I frantically stuffed a dummy in her mouth - I have to admit I was almost hysterical and thought she was dead. However, by the time the ambulance had taken her to hospital, Eliza was behaving and presenting as a healthy toddler.
Eliza needs to drink plenty and eat salty food (within reason). This helps keep her blood pressure up. This advice was also given to us for Eliza’s brother, Jack, who is two years older. He has been having dizzy episodes where he just falls over. A week-long heartrecording device has shown nothing out of the ordinary, so we have to trust that he is healthy.
We went to see a paediatrician privately and ECGs showed a regular healthy heart. Eliza had more frequent episodes of ‘going off’. It often occurred when she was upset or tired. It was only because her father has an irregular heartbeat that the paediatrician referred Eliza to a cardiologist, sure that the prognosis would be healthy.
However, Eliza’s condition is always at the back of my mind. If Jack’s dizziness worsens or if I see worrying similarities with the symptoms Eliza presented, I would quickly return to specialists. I’m not yet convinced that there is no connection.
Eliza wore a 24-hour heart monitor, which I returned to the hospital for analysis. Meanwhile, she suffered another attack. The next morning I rang the cardiologist in tears, saying I was sure there was something wrong – and he began talking about ‘pacemaker, heartblock, urgent’.
Note: Since writing this case study, Jack had a nasty fall on his bike. He was badly winded and lost consciousness for several minutes, going very yellow and grey. His eyes were sinking vacantly back into his head and he could not hear, see or feel anything.
The heart monitor had shown that Eliza’s heart was stopping for up to 11 seconds at a time, even when she didn’t appear to be having episodes.
I was panicked but Jack came round on his own, though he was sick and rather wobbly. However, when he was checked at the hospital all his traces were normal and they later said it was concussion, even though he did not hit his head. Luckily Jack is already under a cardiologist and thanks to STARS he is now being monitored for RAS.
From then things moved very quickly. Within hours Eliza was in hospital and within days she had a pacemaker fitted for intermittent complete heart block and neurocardiogenic syncope. Within a couple of months Eliza was back in hospital with a swollen red pacemaker site but a hefty dose of antibiotics brought this down.
+44 1789 450564
Sarah Levete-Newell Oxfordshire
trudie@stars.org.uk
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Joel’s Passion As a mum, I remember vividly those dark days when Joel would have had multiple RAS attacks per day, especially when he was toddling, or go a week without one and I would feel elated only to be brought down to earth again when another attack occurred. Naturally I wanted to wrap him in cotton wool and protect him from any incident likely to lead to an RAS. I remember wondering if Joel could have the normal life other little boys have. But Joel (now 7) was a determined little boy! He has an older brother and, of course, he had to keep up with him! From an early age Joel showed a love for rugby, watching it on TV, and kicking the ball from the stand and passing the ball to his brother and asking for the supporters clothing. Frequently with family and friends he proudly goes to watch his team Ulster play. As his desire for rugby grew, I knew the inevitable question was coming! When Joel was 6 years old, he was eligible to join his local rugby club. I gritted my teeth and decided to encourage his passion for this physically demanding sport, and registered him with the club. I made his leaders and organisers aware of his medical condition using the STARS information leaflets. The club was very accepting of Joel and there was no issue about his medical condition.
can lead to an RAS attack, so knowledge is power as this reduces his near misses and a full blown attack. He is so passionate about rugby and gives it one hundred percent! Can you imagine my immense pride when Joel was presented with the award “Player of the year P2/P3” in May 07. This picture shows Joel with Rory Best, Ireland’s Hooker NO 2. Rory Best presented Joel with player of the year for his age group in his local Banbridge rugby club! We were all so proud of his achievement. His dream is that his friend Callum and he WILL play for Ulster and Ireland in the future! This award and picture, shows that there is a lot of living to do done with RAS. Yes it’s two years now since Joel has had an RAS, and yes he still has “near misses”, but he lives life to the full by minimising risks, that extra supervision, and patient and carer knowledge. I can only stress to all parents out there with children who suffer from RAS that, although there are dark days, there are many more brighter days. Encourage your child to live life to the full by minimising risks to achieve their dreams! So Joel is looking forward to the Rugby World cup later in the Year, and watching his hero Rory Best. Come on Ireland!!
Joel sustains injuries during rugby, but as Joel has grown up he is aware that any injury potentially
Cathrine Reid Co Down
STARS conference at the Heart Rhythm Congress 2007 to register please visit www.heartrhythm.org.uk 16
A Roller Coaster Ride into the Unknown Life was pretty good for my daughter Kellie in 2005. She was happy at boarding school with plenty of friends, doing very well academically (on an academic scholarship) and enjoying her new love of rowing. Then, out of the blue, she started collapsing for no apparent reason. This was the beginning of a roller coaster ride into the unknown. After months of ambulance journeys and the like, Kellie was admitted to hospital for tests (MRI, EEG, ECG etc.) but nothing was found – she even collapsed in the hospital corridor as she was discharged! A moment I will never forget. We visited every conceivable specialist you can imagine (cranial osteopaths, voice/ speech/breathing specialists, paediatricians, hormone specialist, cardiologist, Chinese herbalists, homeopaths etc. etc.) Poor Kellie thought she was going mad and many of the so-called experts suggested it was all in her mind and that we should pursue the psychiatric route. Fortunately, sense prevailed when we rationalised that it was not possible for her to physically make herself collapse 10/20 times daily.
of the specialists talking so we felt very much at home! Then a Professor of Neurovascular Medicine and one of the top Autonomic Specialists in the world gave a talk about POTS. I will never forget to the day I die the excitement we all felt individually – he was talking about Kellie – everything he said was exactly how she felt.
Then my husband found the STARS website. That was the beginning of sanity. Jenni Cozon was and is our sense prevailed saviour. All the wonderful when STARS we rationalised that it literature poured through was not possible for her the letterbox to physically make and the wristbands herself collapse 10/20 found new homes with all of Kellie’s friends. We, at last, had an identity and there was light at the end of the tunnel. Jenni gave us lots of medical names to contact and, of course, the details of the STARS conference. My husband, Kellie and I attended one day of the conference. It was wonderful. We had already had an appointment with one
We will definitely return to the conference this year because you can never stop learning and you can never have enough friends who understand and accept you as you are.
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The whole day was invigorating. In the afternoon we had a wonderful opportunity to talk to other sufferers of POTS and share experiences. Kellie, for the first time in a year, realised that she was not going mad. Thank you Trudie for helping Kellie off the floor (both literally and metaphorically!). After the conference we made an appointment to see a specialist in London and following a number of tests, Kellie started on midodrine. Kellie missed two terms of School and she used to collapseup to 10/20 times every day. In January she sat her mock GCSE’s (in her pjs!) and is gradually (albeit with chronic fatigue) getting her life back.
NOTE Kellie and her parents were attending the STARS Conference 2006, which was held near the NEC, Birmingham. The STARS conference 2007 will be taking place on 31 October, again by the NEC. Full details are contained in this newsletter. newsletter.
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+44 1789 450564
Cheryl Maher Hampshire
trudie@stars.org.uk
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STARS Youth Syncope Message Board (Moderated) Created specially for young people to chat between themselves, we hope it will allow all our young sufferers to express their fears, frustrations and anxieties, and help them realise that they are not alone. Our Youth helpline assistant will no doubt be adding her comments from time to time as well. The summer holidays are approaching and exams are over, so please have a look at YOUR new message board and help us make it even bigger and buzzier than the general one! Please use it because it will only be as good as you make it. Where message boards are concerned, the more, the merrier is a very apt saying! There is nothing which can hinder or circumvent a strong and determined soul seeking for health, usefulness, truth and success. Ella Wheeler Wilcox
Blackouts, syncope and epilepsy – getting the right diagnosis. In April, STARS, the Blackouts Trust, launched a campaign to help prevent patients in the UK being incorrectly diagnosed with epilepsy. In this article, our CEO, Trudie Lobban, explains the issue of misdiagnosis and illustrates why it can be so difficult for specialists to reach the correct diagnosis. Almost unbelievably, it is estimated that up to 150,000 UK epilepsy patients have been misdiagnosed. If that weren’t tragedy enough, this misdiagnosis of epilepsy is estimated to cost the NHS about £200m each year.
SYNCOPE, EPILEPSY AND MISDIAGNOSIS STARS is for patients who suffer from syncope (Sin-koh-pee). Syncope is a little-known cardiovascular problem but is by far the most common cause of blackouts, and in many patients is indicative of a potentially fatal heart rhythm irregularity. Strictly, syncope is a loss of consciousness resulting from a sudden interruption in the blood supply to the brain. It is believed by experts that up to half of the UK population will at some stage in life suffer a syncopal episode. For many this will be a faint that happens only once, for many others the consequences are considerably more grave. A lack of awareness of syncope in the medical community means that syncope often goes unrecognised or, worse, misdiagnosed as epilepsy. This presents sufferers with many of the restrictions on daily life faced by those with epilepsy, but with absolutely no chance of improvement though effective clinical management. Compounding the tragedy is that effective treatment will be 100 per cent effective and free from side effects for many of these syncope patients once correctly diagnosed.
STARS conference at the Heart Rhythm Congress 2007 to register please visit www.heartrhythm.org.uk 18
WHY SO MUCH MISDIAGNOSIS? The main reason for misdiagnosis of syncope as epilepsy is that the clinical features of syncope, particularly Reflex Asystolic Syncope (also known as Reflex Anoxic Seizures), mimic those classically associated with epileptic seizures. For example, patients frequently jerk their arms and legs about whilst unconscious and might also demonstrate prodromal features. Breathing becomes abnormal, incontinence is common and the after effects of the episode are also similar to those experienced by someone recovering from an epileptic seizure. These symptoms arise as the body’s neurones are irritated by the lack of oxygen. Furthermore patients may have fully recovered upon admission. Doctors have to rely on second-hand description of the episodes from bystanders. In addition, there are fewer than 70 dedicated heart rhythm specialists in the UK – less than one for every ten thousand sufferers – and only 350 neurologists for the whole country. As a result, ruling out epilepsy and reaching a correct diagnosis is extremely challenging. Today, UK data suggest that up to 30 percent of adults and 40 per cent of children diagnosed as suffering from epilepsy do not have it.
HOW CAN WE ADDRESS THE PROBLEM? It is clear that something has to be done to help patients navigate the healthcare system upon experiencing a blackout, so that they know what questions to ask, and so that they see appropriate specialists before being prescribed treatment, and before being labelled as suffering a condition very different to that which ultimately is causing their symptoms. Last month STARS launched the Blackouts Checklist. Please access a copy at www.stars.org.uk/checklist. The Blackouts Checklist aims to put all the essential information and guidance a patient and general physician might need to help reach the correct diagnosis. When patients are empowered with important information they can help their doctor better understand the symptoms and nature of their blackouts. This can help avoid a long list of referrals, misdiagnosis and inappropriate treatment before an accurate diagnosis is secured.
RAPID ACCESS BLACKOUT CLINICS It is also essential that cardiologist heart rhythm experts and their neurology colleagues work together to ensure that as much as possible is done to rapidly reach an accurate diagnosis. STARS is working with the Department of Health to produce a blueprint for a new kind of triage clinic, the Rapid Access Blackout Clinic. These clinics will be designed to bring together expertise from neurology, cardiology, paediatrics and care of the elderly to ensure that appropriate decisions are made as quickly as possible, and so that the correct referral is made quickly. The first of these opened in Manchester in June, and we look forward to this being the first of dozens.
WHAT CAN YOU DO? Just by reading this article, I hope that you feel empowered to help should the opportunity arise. Simply knowing the basics of how syncope can look like epilepsy will enable you to ask the right questions when there might be any doubt of a diagnosis of epilepsy. For example, if someone diagnosed with epilepsy does not respond to drug treatment then they become a clear candidate for ruling out syncope as a cause of their ‘seizures’. For more information, please take a look at the Blackout Checklist from www.stars.org.uk or call us on 01789 450564.
“The greatest glory is not in never falling but in rising every time you do” +44 1789 450564
trudie@stars.org.uk
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Q and A with Dr Adam Fitzpatrick, Consultant Cardiologist, Manchester Heart Centre and STARS Patron
THE CARDIOLOGIST Why should a cardiologist care about blackouts? Surely all blackouts are due to a disturbance of the brain, such as epilepsy? It is believed that about two thirds of “blackouts” are caused by lack of blood flow to the brain. This is often transient and causes loss of consciousness. This cause of a blackout is known as syncope, and syncope is defined as transient loss of consciousness caused by complete shut-off of blood flow to the whole brain. This is quite different from epilepsy, where the problem begins in the brain itself, and the blood flow during an attack may be completely normal.
How does such a drastic episode occur? There are two common causes of syncope. Firstly, a reflex may be triggered, suddenly and inappropriately. This reflex is part of the system that controls blood pressure, so that when you stand up after lying down, your blood pressure does not drop suddenly and starve the brain. This eflex keeps the blood pressure up by speeding up the heart slightly, and tightening up the blood vessels that go to tissues such as the muscles of the arms and legs. Less blood goes to these tissues, and more is available to be pumped up to the brain. Blood pressure remains remarkably constant despite this complete change of position. The second common cause is an arrhythmia. An arrhythmia is a heart rhythm abnormality. There can be more slow ones, brady-arrhythmias, or fast ones tachy-arrhythmias. Either of these rhythms can be so abnormal that heart pumping function is seriously impaired. While blood pressure depends a lot on how tight the blood vessels are, it also depends on the heart to pump a constant flow of blood into those blood vessels. If the pump struggles to deliver the blood, the blood pressure falls. Because blood has to be pumped up to the brain, this may be one of the first organs affected, and a sufficiently large drop in blood pressure, can then cause syncope. For reasons that we don’t understand, the reflexes which control blood pressure can suddenly be triggered. This can cause a very slow or stopped heart, and very low blood pressure. The low blood pressure is caused by the blood vessels opening up suddenly, and all the blood rushing to the muscles and away from the brain and skin. This is what happens in a “faint”, which commonly turns patients very pale as blood drains from the skin.
Surely, syncope can be distinguished from a blackout due to a disturbance of the brain? It is a very common mistake to believe that a transient blackout is due to a failure of the brain. In fact most blackouts are due to a failure of the blood flow to the brain. Features commonly thought to be characteristic of epilepsy, such as twitching, jerking and passing water by accident, and also
STARS conference at the Heart Rhythm Congress 2007 to register please visit www.heartrhythm.org.uk 20
commonly seen in syncope. Therefore, witnesses may think they have seen a person have a “fit”, but in fact the “fit” was caused by syncope, not by epilepsy. [Some features suggest a diagnosis of syncope, including going very pale during and attack, and having a low pulse or blood pressure during an attack].
How could a cardiologist help? The most recent research into blackouts makes it clear again that help for patients with blackouts depends on them seeing a good doctor, who considers all the possibilities and does not assume that a blackout is due to epilepsy. A good doctor will know that most blackouts are due to a failure of blood flow to the brain, not a failure of the brain first. This is very important, because treatment for epilepsy will not help syncope. Where there is doubt about a diagnosis in blackouts, a good doctor will consider asking a cardiologist to give an opinion.
What test would a cardiologist do? The most basic test in cardiology is the electrocardiogram, or ECG. This will usually be normal in patients with blackouts, but in some, very important abnormalities will show up. Some of the abnormalities can diagnose life-threatening conditions which may cause sudden cardiac death. Every patient who has blackouts should have an ECG, read by a competent doctor. Other test included long-term ECG monitoring, which attempts to make a recording during an attack. This is best done using an implantable ECG recorder, which is easy to put in under a quick local anaesthetic. Some patients may have a tilt-table test, which aims to provoke an attach by triggering the abnormal blood pressure reflex
What difference would this make? A false diagnosis of epilepsy is just as traumatic as a true diagnosis of epilepsy, only more tragic, because the true diagnosis may be missed, and treatment may be wrong. We have many patients whose blackouts have been treated as epilepsy, but who have latter been found to have syncope. Many have been diagnosed using the implantable ECG recorder, which shows that a pacemaker is needed in some cases. We have many patients who have initially been diagnosed with epilepsy and treated with epilepsy drugs. Later they have been diagnosed correctly with syncope and have had no more blackouts after receiving a pacemaker. We have other patients who were diagnosed with epilepsy, but when an ECG was done much later, it showed a life-threatening condition, such as the Long QT syndrome.
What should I do? Making a correct diagnosis in blackouts can be very, very difficult, because it is unusual for a medical person to witness an attack and be able to record all the tests during it. The features of blackouts due to epilepsy or syncope can be very similar. However, if there has been doubt about your diagnosis you should see a cardiologist and have an ECG and further tests. If you have epilepsy, but have not responded to different drug treatments, the diagnosis could be in doubt and you should see a cardiologist.
+44 1789 450564
trudie@stars.org.uk
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www.stars.org.uk
Congratulations Nigel and Mandy Many of you who have been members of STARS for as long as you can remember will know Mandy Warren. She has been one of our most active volunteers, and created the STARS database that we still use today! We are, therefore, thrilled to be able to announce the safe arrival of Luke Charles Warren on 16 May 2007. He weighed in at 6lb 4oz. I know you will all join us in sending congratulations to Nigel and Mandy. When she has got used to being a Mum, Mandy has promised to write her story from beginning to end which will, I am sure, answer many questions that might be worrying some of our members (and their mothers) who are thinking of starting a family!
Stretch Syncope in Adolescence Recently we have heard of a number of cases of stretch syncope. This occurs through stretching and bending the neck as far back as possible. The sufferer will first experience light-headedness and visual disturbances and then passes out. Those who suffer with stretch syncope often have a family history of syncope. These attacks can be prevented by remembering not to extend the neck backwards when having a good stretch! Awareness of this kind of syncope is important in order to avoid unnecessary investigations!
IPods present negligible risk for patients with pacemakers There have been reports in the press that personal electronic equipment can have a temporary effect on the operation of implantable pacemakers and defibrillators. However, good news for ipod and MP3 players – the MHRA (Medicine and ealthcare products Regulatory Agency) have advised that providing they are not placed directly over the implant, the riskis negligible. Treat as you would a mobile phone – just be sensible and do not keep in a shirt pocket etc.
STARS conference at the Heart Rhythm Congress 2007 to register please visit www.heartrhythm.org.uk 22
ARRHYTHMIA AWARENESS WEEK 2007 www.aaaw.org.uk STARS at the Arrhythmia Awareness Week 2007 The Heart Rhythm Charity
Thank you to all STARS members and carers, friends etc who helped to make this event such a success. We exceeded the number of events held last year with over 260 held at hospitals and within the community all over the UK. As well as events, of our supporters distributed around 300 specific packs to GP’s again all over the country, reaching out to a huge section of Primary Care which was one of our main aims this year in highlighting better understanding and diagnosis of syncope and RAS. Arrhythmia Awareness Week 2007 did not just concentrate on raising awareness in the UK but for the first time we promoted a World Heart Rhythm Day. A number of organisations from Europe, USA, South Africa, New Zealand and Australia joined forces to highlight the need for greater awareness. More information can be found on our website www.aaaw.org.uk .
Arrhythmia Awareness Week 2007 was launched at Westminster on 13th June and was attended by a selection of members from STARS as well as doctors, nurses, MPs and representatives from 10 different European countries. Presentations were given by John Maples, MP for Stratford upon Avon, Professor John Camm, President of Arrhythmia Alliance Executive Committee, Roger Boyle and Mike Yates, from the Department of Health and Richard Schilling, Consultant Cardiologist from St Bartholomew’s Hospital. The reception was a great success and it was highlighted by the speakers that the charity is growing from strength to strength and also internationally!
STARS members, the Mackay family travelled from Glasgow to present Trudie with a framed photograph of the Red Arrows team. It is a limited edition and has been signed by all the 2007 Red Arrows. More about this at a later date.
So thank you once again for your support and we will use the success of this year’s campaign to make Arrhythmia Awareness Week 2008 even bigger and better!
David, Trudie, Jenni, Jane and Tom Clarke, CBE, MP for Coatbridge & Chryston
Carole Ellis, Jenni Cozon, Wendy Hayward from STARS awaiting guests
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John Camm, Mike Yates, Trudie, Roger Boyle
Together we really are making a difference.
trudie@stars.org.uk
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Important Reminders STARS CONFERENCE 31ST OCTOBER 2007 Register now for STARS Conference which is taking place within the Heart Rhythm Congress 2007 (HRC) On Wednesday 31 October. The day will be informative and exciting. Leading medical experts from all over the world will be present and available to take your questions. There will be breakout sessions (which are always popular) for you to share views and concerns. To register please visit www.heartrhythm.org.uk or send a cheque for £40 payable to STARS. If you have any questions please contact the congress department on 01789 451 831 or email aa@stars.org.uk An idea for those of you who chat on the STARS syncope message board… Have you thought of attending the STARS conference and taking advantage of the opportunity to not only meet others in the same situation but maybe even put faces to ‘friends’from the message Board?! To register for the STARS conference in October please visit www.heartrhythm.org.uk
AGENDA Balloon Debate “This House Believes that Blackout Services Should be Run by 1. Cardiologists; 2.Generalists; 3. Neurologists Experiences of Blackout Services from the Patient Perspective: The Good, the Bad and the Ugly What’s New in Vasovagal Syncope COFFEE Blackouts in the Younger Patient: Causes, investigation and management LUNCH Devices in the management of blackouts: 1. What’s New in Investigation; 2. Treating Brady and Tachyarrhythmias Debate“This House Believes that Head-up Tilt Table Testing is Obsolete” COFFEE When Syncope Isn’t Syncope: Helping the Patient with Non-Syncopal Attacks Syncope in the Older Patient: The State of the Art CLOSE THERE WILL BE PLENTY OF TIME TO SPEAK TO EXPERTS, MEET FELLOW SUFFERERS AND THE STARS TEAM.
STARS conference at the Heart Rhythm Congress 2007 to register please visit www.heartrhythm.org.uk 24
