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The Blackouts Trust SEPTEMBER 2008 : ISSUE 29 WORKING TOGETHER WITH INDIVIDUALS, FAMILIES AND MEDICAL PROFESSIONALS TO OFFER SUPPORT AND INFORMATION ON SYNCOPE AND REFLEX ANOXIC SEIZURES

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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 Registered Charity No: 1084898 SUBSCRIPTIONS AND DONATIONS Your subscriptions are what keep STARS up and running. Please renew your 2008 subscription Subscriptions are a minimum of £15/$25/€25 a year. It is vitally important that you remember to renew your subscription. Without your help, we would not be able to provide our essential service to the families of RAS and Syncope sufferers. Thank you. You can type on this form and email it back to [email protected], or print, complete & post it back.

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SUBSCRIBE & DONATE £/$/€ I would like to make a donation to STARS and enclose: I have made a donation to STARS via PAYPAL at www.stars.org.uk to the sum of: I have made a donation to STARS via my CAF account to the sum of: (Please ﬁ ll in and email back to us for identiﬁ cation purposes) I would like to RENEW my subscription to STARS and enclose (min of £15/$25/€25) I have renewed my subscription via PAYPAL at www.stars.org.uk to the sum of: I have arranged a monthly standing order from my Bank / Building Society Account to STARS (min. £2); (state amount) I have arranged an annual standing order from my Bank / Building Society Account to STARS (min £15); (state amount) Please tick the space if you agree to gift aid your subscription/donation. (Further info on next page) Tick Here: GIFT AID DECLARATION STANDING ORDER AUTHORITY Name of taxpayer: ______My Bank Address: ______Bank Address: ______PLEASE PAY: ______Postcode: ______STARS, Account: 02423406, Sort Code: 30-98-26 Please tick to allow STARS to claim an extra 28p for every Lloyds TSB Plc, 22 Bridge Street, £1 you donate, at no cost to you. Stratford-Upon-Avon, CV37 6AG

I want STARS to treat all donations I have made since 6 April The sum of: £/€/$ 2000, and all donations I make from the date of this declaration until I notify you otherwise, as Gift Aid donations. On (First Date) / 2008 I currently pay an amount of income tax and/or capital gains tax at least equal to the tax that STARS reclaims on my donations And after this, every Month / Year ( delete) in the tax year (currently 28p for each £). I may cancel this My Account Number: declaration at any time by notifying STARS. I will notify STARS if I change my name or address. Please My Sort Code note full details of Gift Aid tax relief are available from your local tax offi ce in leafl et IR 65. If you pay tax at the higher rate you My Signature can claim further tax relief in your Self-Assessment tax return. Date Return to STARS, PO Box 175, Please print and fi ll out this form and hand to Stratford Upon Avon, Warwickshire, CV37 8YD your bank or building society. Thank you My Work Experience New Head of at STARS Fundraising I have just spent my work experience STARS is delighted to announce that from the end of July week at STARS learning about the we will be benefi ting from the expertise of Barbara Hampel. charity, how it is run and the wide range Barbara has been appointed as Head of Fundraising for of conditions that need their support. I the Arrhythmia Alliance but will also be lending support was very surprised at how big the charity to STARS in their fundraising activities and providing actually was and, now that STARS is advice and help when needed. also in America, how global knowledge of the condition is increasing. Barbara’s fi rst role as a fundraiser was with the Epilepsy Association and since then she has pioneered the fi rst All the staff were really supportive and fundraising drive for Marie Curie Cancer Care in the West friendly, and made me feel really welcome. I spent different Midlands, before joining Macmillan Nurses. Latterly, she days learning what each individual does, like organising has been freelance as a Consultant Fundraiser. conferences, raising awareness, fundraising, producing “Barbara and I are really looking forward to developing new leafl ets and updating the web page, as well as providing further the strong foundations that STARS has already support for the many telephone calls and email enquiries established and it is a that are received daily. pleasure to welcome It was really interesting to learn about how much preparation somebody on board and hard work goes into successfully running the charity with the experience and the general structure. and reputation in the charity sector that I would recommend coming here for work experience! I really follows our new Head enjoyed my week and would love to come back again. of Fundraising” said Katie Fifi eld Trudie Lobban, CEO of Stowe STARS.

REFLEX ANOXIC SEIZURES Join STARS at is a type of arrhythmia (heart rhythm disorder) occurring mainly Arrhythmia Alliance Regional in young children but can occur at any age. The sudden shock of Meetings pain, however slight, or indeed any un-expected stimuli, causes Each year the Arrhythmia Alliance holds a series of regional meetings the heart and breathing to attracting patient and medical delegates. This year’s meetings have been so stop, the eyes to roll up into the head, the complexion to become successful extra dates have been added to the Autumn calendar to include Wales, deathly white, the jaw to clench (9th October) and Northern Ireland (date still to be conﬁ rmed). and the body to stiffen often with legs and arms jerking. After 30 2008 agendas have included: seconds or so the body relaxes and the heart and breathing • An overview of Standard 7 (Arrhythmia NSF) restart. The sufferer may remain • Inherited cardiac conditions unconscious for one or two • Pathways for the investigation and management of patients minutes or for well over an hour. with tachycardia and palpitations RAS is often misdiagnosed as breath-holding or, more seriously, • The role of the arrhythmia nurse • Protocols for cardiac arrest and ICD patients as epilepsy. • Provision of integrated T-LoC services • Atrial Fibrillation and primary care SYNCOPE (pron: sin-co-pee), Venues for 2009 will include: is a result of the temporary cutting off of the supply of North West North East Wales oxygenated blood to the brain. Northern Ireland South West Midlands The mechanism of the syncope in susceptible individuals includes London Scotland reﬂ ex cardiac stand still (always reversible) commonly following a Reserve your place at the two 2008 meetings or surprising bump to the head or elsewhere. Recurrent syncope register an interest in 2009 venues, please email is perhaps one of the most Liz Breen at [email protected] challenging and, at the same time, most frustrating problems that is encountered in clinical The Heart Rhythm Charity practice.

01789 450564 www.stars.org.uk [email protected]

3 A review of this year’s Arrhythmia Alliance Awareness Week in June organised by Arrhythmia Alliance, supported by STARS

THE FIFTH annual Arrhythmia forty-fi ve minutes making him of the Awareness Week, a new Awareness Week, AAAW ‘08, drew the second fastest person to row chapter which heralds the start of support from all over the world across the channel. You will fi nd a much more expansive growth with hundreds of awareness events Christopher’s story on page 8 of pattern in terms of global support focused on cardiac arrhythmias. this issue. for Awareness Weeks of the future. Staged in the UK, support events were also held as far-a-fi eld as And while one man put his oar The importance of an Awareness China, the Middle East, Russia, in for charity, school children in Week is that it reminds people USA and South Africa for the fi rst village schools around the country as well as being an awareness time. released hundreds of balloons raising tool. It has the ability to from their playgrounds to help remind because it acts as an The 2008 Awareness Week raise awareness of syncope. The infl uence on government’s decision organised by Arrhythmia Alliance (A-A) events raised awareness as local makers and their obligation to www.heartrhythmcharity.org.uk newspapers were on hand to published guidelines, and, the - was the best supported so far photograph the balloons fl oat ability to make us aware of a medical with a 50 per cent increase in the effortlessly upwards into the condition which claims 100,000 number of events held right across blue summer sky. Positive press lives prematurely each year. A-A the country, (over 550 events), coverage such as this was added is a strong advocate of correct from the Orkney Islands to the to with a string of radio interviews diagnosis, early treatment and Channel Islands and this year’s undertaken for the BBC and improved quality of life for all those global gathering of awareness also independent radio networks in a affected by cardiac arrhythmias saw events staged in Australia. drive to continue raising awareness which is why an Awareness Week among the listening public. is such an important part of the Having already received the national health calendar. support of Prime Minister Gordon Elsewhere, individuals and groups Brown and the endorsement of people emailed, wrote or rang Next year’s Awareness Week of former Prime Minister the Rt the A-A offi ce in Stratford-upon- may well concentrate on trying to Honourable Tony Blair (who is Avon and requested boxes of in- improve cardiac services across Patron of Arrhythmia Alliance), formation, literature and posters the UK and in particular in those Awareness Week 2008 was for display. Many STARS mem- NHS areas where the commitment launched at Portcullis House, bers chose to back Awareness to the 18 week time parameter has Westminster, in front of an invited Week with their own individual not been as rigorous as other parts audience including, patients, events ranging from adopting a GP of the country. It could be that nurses, politicians, carers, doctors surgery, an information stand at in 12 months’ time the growth in and cardiologists. STARS was well their local hospital, balloon global support may determine the represented! launches, barbeques and summer agenda for AAAW ‘09, certainly balls. there could be increased interest On the same day as the Westminster as was shown by the involvement launch, a young man found himself The importance of being a part of of groups in the United Arab on the shores of France having an alliance was demonstrated Emirates, Bolivia and China. just rowed a single-skull across by the continued support people the English Channel to raise show towards raising awareness What can be concluded from this thousands of pounds for STARS about cardiac arrhythmias whether year’s Awareness Week is that it (Syncope Trust and Refl ex Anoxic they are a patient, carer, medical was well supported, it serves as a Seizures www.stars.org.uk). His professional or fund raising very important information platform girlfriend is a sufferer of Vasovagal supporter throughout the year. and judging by public reaction – Syncope and he achieved the A-A believes it is now beginning to this annual event will be here for Herculean feat in three hours see a new phase in the concept many years to come. Support STARS! Give a bear a friendly home and help families across the UK

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4 Peace of Mind with MedicAlert all ambulance professionals are trained to look for medical identifi cation.” Roland Furber, Chief Executive of the British Paramedic Association. MedicAlert members wear either a bracelet, necklet, wristband or watch, known as an Emblem, which bears the international symbol for medicine and is engraved with important medical details and any other main medical conditions or allergies, a personal ID number and a 24 hour emergency The MedicAlert Foundation is the only non-profi t telephone number providing access to the Member’s making, registered charity that provides a medical records and personal details from vital life-saving service for children and adults with anywhere in the world in over 100 languages. hidden medical conditions and allergies. MedicAlert provides peace of mind for people with conditions such as diabetes, epilepsy, complicated How to become medication regimes or other hidden medical conditions. a Member Medical Identifi cation ensures that in an emergency Membership starts from £25 plus the cost of situation those around you would know that you their choice of Emblem. have a hidden medical condition. Wearing an Emblem also ensures that all information on medical Anyone can join MedicAlert by calling conditions, medications, and next of kin is available. freephone number 0800 581 420 “In an emergency situation it is essential that or join online and view the entire range ambulance professionals receive as much award-winning stylish jewellery suitable information about a patient’s condition as quickly as for children, women and men at possible. In many cases, the patient will not be able www.medicalert.org.uk to communicate and as a fi rst port of call, Hearts and Minds

Serendipity is a wonderful thing! dividing us into four teams and I was ﬁ rst acquainted with STARS asking us for one word reactions to www.stars.org.uk when I attended a ‘Health Fair’ in different headings. It was a very Worplesdon, Surrey. Our Epilepsy effective way of making the group NOTE Action stand was next to that of think about syncope and epilepsy STARS and I got talking to their – we all learned a lot in the process, We have SIRS based all over volunteer Alexandra Whitman (She including Sarah, I think! the country and if anyone or is one of their ﬁ rst SIRs – STARS group would like a SIR Information Representatives). As a result, those members volunteer to visit a meeting present unanimously felt that it and tell them about syncope As we chatted, I began to see that would be a good idea if a link we had a link insofar as symptoms and the work of STARS, could be set up between the please contact: of syncope could be confused with Epilepsy Action website and the epilepsy. I immediately thought STARS website. Discussions are [email protected] what an excellent idea it would now in progress and we hope be to have a SIR speak at my that this will happen sooner rather local Epilepsy Action Group in than later. Guildford. David Richens Sarah Boxall was our SIR for Epilepsy Action this meeting. She was fabulous, Guildford www.epilepsy.org.uk

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5 Syncope sisters and brothers too.. of ours seems to encroach into So what ever the circumstance, every area of our life, it is nice to all are welcome in the group! have a moment where it does not seem to exist or bother us. It Some may fi nd it very intimidating, is with thanks to those within as there is a lot of chatter, amongst the support group, that I have what may seem a few. Come on learnt to take a step back and in, everyone is really friendly and pace myself better. I am nowhere there is plenty of virtual wine, near ‘good’ at it yet, but as you chocolates and cake to go around. can see I am getting there. Life Which we all know is the best sort! at present feels like doing a Oh there are tales I could tell “Lean on me, when you’re not jigsaw puzzle, but without the from in there. There are those strong. And I’ll be your friend, picture. I seem to have various that get the attentions of gorgeous I’ll help you carry on, for it won’t issues going on, but it is learning looking life guards. There is be long, ‘til I’m gonna need, what is attributed to POTS / NCS, certainly one Amazon like woman, somebody to lean on” and what other things are going who has fought everyone to get Bill Withers – Lean on me on. So with the metaphorical her diagnosis! Let alone a young large shoulders of the support girl, who has over come adversity A little while back, a number of group, I am getting there. I think and trigger points, to get where us who post regularly on the I have the edge pieces now… she is now. There are lots of STARS syncope message board, others in there full of tales, a were having great fun trying to It just goes to show, life is not budding anaesthetist, someone think of songs, which related to as simple as a diagnosis. There who is training her dog to help syncope. As such the Syncope are many other factors. How to with her syncope and there are sisters and brothers got their learn to control it. How to deal two of us on there that are names. So it was without too with day to day life issues, let making jewellery, to which we much effort, I came across the alone the way and severity this are donating an amount to lyrics, which summed up what affects us. I think perhaps the STARS! There is also one ‘mum’, the ‘Message Board’ within biggest issue we all face, is who is virtually single handed STARS was all about. the fact this cannot be ‘cured’, organising a balloon launch I am sitting here in the sun only controlled. Knowing this is in Scotland – hoping that she writing this. I am watching my something you have to live with manages to cause air traffi c a 3 year old son play on his for an indeterminate period of few scratched heads!! slide, a wasp is industriously time, can be daunting to those trying to strip wood from the who have just been diagnosed! So why not come and join in table to make his nest, and This is where the support group with the syncope sisters and the cheeky robin is trying to again comes into its own. There brothers, share your tales, share get the crust of the remains of are those who have had this you woes, and just have some a sandwich, next to him. Right for a long while, and those who fun, meet great friends and all now life feels pretty good. have had it a short while. There the support you need! are even those who have to It is a rare moment, and one I battle to get a diagnosis, which is Kristina Jackson cherish. For when this ‘beast’ probably the majority, not the few. Aberporth STARS Syncope Message Board http://health.groups.yahoo.com/group/syncope/ For those of you who have not joined the Board this must be testament enough that there is support, information, help, not to mention fun and friends to be made, when you decide to take part. It is always buzzing and your fi rst posting will be answered with a stampede of ‘welcomes’. For some of our members it is a lifeline at times, for others it is where they can share the excitement of a wobble-free day! We look forward to welcoming you!

01789 450564 www.stars.org.uk [email protected]

6 Lucky Thirteen for the Marathon Man Thirteen may be unlucky for some but organisers wisely decided to postpone not for Christian Burge!! the race! Back in October 2007, whilst attending The event kicked off again the next the Heart Rhythm Congress, I found day at 5.00am with the distance myself listening to a very courageous reduced to just over 50 miles. Ironically, young lady who had stood up in front it was blazing hot towards the end of 250 strangers to talk abut her of what was a totally awesome race experience of living with unexplained – not sure that my wife agrees with this syncope, paying tribute to the team description! I was a little stiff and at STARS who had supported her sore and was missing a few toe nails, during her long search for a diagnosis. otherwise I felt fi ne and a little lighter! I knew then that I could not think of a I ran around 59 miles in about 11.40 better charity to support if I was to hours. Total altitude climbed was 3987 attempt an ultra marathon. meters (equivalent to climbing up the I chose the Jurassic Ultra Marathon Empire State Building nine times!!). – a marathon of 78.6 miles run over Total descent was 4013 meters and three days along the Dorset Jurassic I fi nished 13th out of 35 competitors – coast. We had less than perfect only 18 of us actually completed the weather! The race started on the marathon! Phew!!!! Saturday night in driving rain and Christian Burge blustery winds and after 8 miles of Medtronic, SQDM being blown over along the cliff tops in pitch black, with the Met forecasting By the way, Christian is very modest and forgot to mention that he raised well over storm force winds overnight, the £400 through his endeavours!! Thank you!!! I may not be allowed to work but I can fundraise……… For the past few months, I have been and cherished my independence. I giving home treatments, including have suffered with blackouts since facials, back massages and hand August 2006 and had various tests and feet massages to friends and including EEG, ECG, tilt table test, family. I have raised well over £100. brain scan and EP study and am now waiting to see what the next I realise that life is precious and step is. In the meantime, as well you need to concentrate on what as losing my job I often feel afraid you can do, not what you can’t. I to go out on my own and I have always focus on the goals that certainly lost my independence. are achievable for me to keep my morale up. Don’t let syncope Luckily I am surrounded by family govern your life – inevitably it will and friends and I have a What does a girl do when she is a affect your life but do not let it very supportive boyfriend. I am qualifi ed beautician, manager of a stop you doing things. I always determined that I will overcome well known cosmetic counter in remind myself there is always this condition but, in the meantime, a local store then loses her job someone worse off than me. Keep I am a member of the STARS because of suffering with blackouts? your chin up when you have a moderated message board, giving She picks up the telephone to bad day, which we all do. I have support to new members who have STARS, where the community lots of friends at STARS who just been diagnosed with syncope fundraising team is full of ideas as really do cheer me up and are and, of course, I continue with my to how she can put her talents to always there for me, so thank you! fundraising. the best use to keep busy and at the same time raise some money I am 21 years old and until recently Rachel Sealey for STARS!! worked full time, adored shopping Cheshire

01789 450564 www.stars.org.uk [email protected]

7 Love on the Ocean Wave to cross the Channel and I may she loved. She was eventually even be the fastest British person diagnosed with vasovagal syncope to ever row the 24 miles in a and POTS (postural tachycardia single scull!! Everyone seems syndrome) and now takes amazed that I managed to Midodrine, which has greatly complete the trip in 3 hours improved her quality of life. 45 minutes – only ten minutes Kellie is now back at school and behind the world record held leads a relatively normal life thanks by a Norwegian – I was told it to a signiﬁ cant reduction in the would take me between six and number of times she faints. eight hours. Obviously they had not paid attention to my training!!!! As I arrived back, my family, and For about three months prior to Kellie and her mother were there my trip I spent every spare to greet me, cheering loudly with moment preparing for this a bottle of champagne! It was adventure – not that easy as an amazing experince but not I was in the middle of my AS without its scary moments as I levels. I wanted to raise money found myself battling with the for STARS as they have given busy shipping lanes and a large I am seventeen years old and Kellie enormous help and support freighter! a student at Canford School, during the past few years when Dorset and on Tuesday 19th June she was fainting on average 10 As I write this I have raised about I successfully rowed the English times a day, which had a £3500 and am over the moon that Channel in a single scull (a one huge impact on our lives. Before I have something to show just man rowing boat!) in aid of STARS came into her life, Kellie’s how grateful I am to STARS for STARS. My girlfriend, Kellie, is fainting meant she was unable to supporting Kellie. a member of STARS and suffers attend school, had to put her with POTS. rowing on hold and give up her Christopher Shepheard-Walwyn social life and many other things Dorset As I write this it is thought that I may have broken the world And we here at STARS are speechless at Chris’ amazing record as the youngest solo rower feat….thank you!!!!!!!!!

Support STARS! Give a bear a friendly home and help families across the UK

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8 Postponed NHS Appointments (and how to deal with them) sound and a told there is pacemaker what seems like trivial no mention was not fainting to the NHS is serious of an ECG needed. to you and me on the screen! (At this point I was given a follow-up appointment we are speechless!) for 14th January 2008 but on 17th October 2007 a letter arrived I duly arrive at the hospital on the postponing this appointment to 2nd, my blood pressure taken, and 3rd April 2008 (due to unforeseen I see the registrar, yes, that very circumstances!!). On the 28th same registrar who didn’t exist!! March, yet another letter arrived He was very pleasant and said telling me that this April 2008 was there was nothing wrong with my again cancelled and I would be heart but I had vasovagal syncope given a fresh date within a month. and why was I on blood pressure I emailed the Appointments Offi ce (bp) tablets as my blood pressure Most of us know the feeling of of the hospital and let them know was so low – 125/79 at age 68 dejection when that envelope in no uncertain terms that I was and that I was to come off these. comes through the door postponing not best pleased!! The only medication for fainting our long awaited consultant’s he could offer (and did not really appointment yet again. Since A few weeks later a letter arrives recommend) was tablets which I completing my tests in October dated 16th April with an appointment declined. Incidentally, the hospital 2007 as to why I faint in for 2nd June but, on 19th May put me on these blood pressure restaurants and on long haul (you’ve guessed it!), I’m told the pills a couple of years ago and I fl ights, I only received the outcome appointment is cancelled. Again I had been trying to get off them ever on Monday 2nd June 2008. see red!! since knowing I have low blood Over the last few years my fainting Immediately I go on-line and fi nd pressure! (We are still speechless!) episodes had increased. Doing my the Secretary for Health’s own research on the web, I found website, phone someone I leave details of my hurt and these could be due to a heavy meal, and am given the number sitting at the table for a long time for my local PATIENTS’ dejection at being treated in this or on long haul fl ights. The last ADVICE AND LIASION manner by the hospital. time en route for Australia (2005) OFFICE. I leave details of I passed out, having dozed off my hurt and dejection at being Now this is off my chest so after the late meal and was sick treated in this manner by the to speak, I hope any STARS and incontinent. hospital. A lovely lady, called member who keeps having their Linda, phones back appointments postponed, will May 2007 saw the to say the reason for take up the matter with their local the cancellation is that PATIENT ADVICE AND LIASION beginning of my revolt! the consultant does SERVICE. You can fi nd them not have a registrar through links with the Dept of but the Appointments Supervisor May 2007 saw the beginning of Health website or via NHS would be contacting me very soon. my revolt! I fainted badly at the direct. Please do not be fobbed off end of a heavy meal. I went to my Soon another letter arrives re- - what seems like trivial GP who dismissed the episode as instating my appointment to a later fainting to the NHS is serious me being “just a fainter”! I saw red time on 2nd June and advising to you and me especially if you and demanded to be referred to me I shall be having an ECG. Then are in a crowded restaurant or the local hospital. By that October I am sent another letter with the on a 747 Jumbo 30,000 feet high. I had seen two consultants, had same date confi rming the time numerous tests and on both (again) but no mention of ECG. Joyce Trueman occasions told my heart was I phone appointments and am Formby

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9 Only a Heartbeat that there was no brain tumour (I after a few chaperoned outings, had had cancer previously), the even ventured out alone. 25 days despondency when the scan for later after I had managed, with a epilepsy showed some suspicious little help, my fi rst supermarket result, the frustration when the shop for many weeks, I fainted Echo Scan and ECGs, showed no again, trapped on the upper fl oor abnormality that would account for of my house alone and frightened, me losing consciousness. Mean- until I fi nally managed to call a while the faints were becoming friend. I experienced 2 more more frequent, as were my stays episodes that night and fi nally we They say that your life can change in hospital. My world shrank from called the emergency services who in a heartbeat... and mine did. a busy, varied freedom to one found nothing wrong apart from First, a little about me: in the of confi nement and fear – not a slow pulse rate, which soon summer of 2007 I was 53 years old, able to shower or cook without returned to normal. A & E also single and self-employed. On a hot supervision - anxious at night in found nothing wrong with me, but day in August, I woke to fi nd myself case I had to brave the stairs to I felt safer there than at home. on park bench fi ghting off the rem- get to the bathroom. Unable to do anything more they eventually sent me home. nants of a terrifying nightmare and By mid September I had blacked wondering what I was doing there. out fi ve times; once on admission The future looked pretty bleak. Gradually I was able to identify the to hospital. Finally, epilepsy was Another week passed, punctuated face of the man, peering at me with ruled out after a sleep reprived by feeling dizzy and the need to great anxiety, as someone I knew. The future looked pretty bleak. lie down frequently. I was trying The following day my doctor as best I could to lead a normal listened to my story, including the Another week passed, punctuated life seeing friends and going out fact that I entered consciousness by feeling dizzy and the need to whenever I could fi nd someone to screaming with fright and embar- lie down frequently. accompany me. Some hours after rassed that I was incontinent, a friend had brought me home and declared that this was a from an overnight stay I fainted EEG. Then a 24 hour blood simple faint. Having never fainted again. It was usual for me to pressure monitor fi tted which, before, I was reassured by this feel cold and shaky after these despite me feeling very faint, and resumed my life as normal... episodes, but my recovery time was recorded nothing of use. I remained for three weeks. This time I was getting longer and longer. I imagine in hospital for 6 days, feeling in the cool of air conditioned my friend was not best pleased dreadful. During this time I cinema, ironically watching Alfred to be recalled, but I was truly underwent a tilt test and, although Hitchcock’s Vertigo. The pattern terrifi ed, shivering and tearful and I didn’t faint, the technician was similar to the last time, felt unable to face the night alone. declared that the problem was a little warning, a terrifying descent Vasovagal Syncope (simple faint) The following day I called the into darkness, but thankfully no and failed to understand why I cardiologist who admitted me incontinence. Not knowing what was so depressed by this diagnosis again. This time there were more else to do I sat through the - she thought it was great news tests – they started to investigate remainder of the fi lm, before asking that it wasn’t my heart – but I my endocrinology – perhaps there my friend to take my car keys already knew that. She told me was a tumour somewhere other and drive me home. that this was hardly ever fatal! She than my brain, perhaps my adrenal The GP I saw this time, referred advised me that I should drink three glands had been affected by me to a neurologist and so started litres of water a day, increase my previous chemotherapy. Was the a battery of neurological and cardi- salt intake and wear support tights. ringing in my ears signifi cant? Not ological tests and a rollercoaster of I followed her advice, convinced according to the ENT man, who emotions. The relief of fi nding out myself that all would be well and also told me that his niece had 01789 450564 www.stars.org.uk [email protected]

10 suffered from faints throughout of the hospital, but sick of the know me and I must certainly her life and that the tests often conﬁ nement. have presented as an anxious and somewhat depressed patient. produced false positives, she was The cardiologist agrees to insert He now uses my case as lecture now 28 and had to give up her job; a loop monitor in my chest and material and I suspect that there not exactly comforting. Another sends me home. The following day will be a few more loop monitors in round of tilt tests and blood I faint again. This time I return to use as a result. My life has pressure monitoring – nothing the hospital where the monitor is returned to something closely conclusive resulted from any of interrogated, this reveals that my resembling normality. I have these. The autonomic specialist heart had “paused” for 25 seconds. regular checks at the pacemaker suggested counselling and told A day later I am ﬁ tted with a clinic and so far all is going well. me to go and get on with my life! pacemaker. When I next see Apart from the fact that I will never Finally I faint, lying in bed, wired up my cardiologist he admits that be able to follow a career as an arc to a heart monitor, I am positively he had begun to think that I was welder (the equipment interferes elated when I come round – at last mad. A slightly tongue-in-cheek with pacemaker functions) which I we will get to the bottom of this. comment, but in the absence think I can live with, I am once again But, no it seems the monitor wasn’t of a physical explanation my working. It is now late October – I doctors had started to believe free to live my independent life. am beside myself and frightened that I had somehow “made” these Rachael Block

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UK loss of e consciousness, Registered Charity No. 1084898 ©2008 and can face m Working problems o together with with education, h individuals, families and work, driving and ly medical professionals to offer even following a ‘normal’ daily routine. d support and information Most worrying is that syncope can be a n on Syncope and e warning sign for a serious, possibly ri Reflex Anoxic Seizures f fatal heart condition. r a bea Support STARS! Give a

01789 450564 www.stars.org.uk [email protected]

11 Life moves on a pace for Christie….. I collapsed I would ruin their 70° and the nurse explained that day or night. I also hated the the test should last 25- 40 minutes attention an attack would bring: and I was to stay still and not talk. people would stare and whisper After 5 minutes I started to feel and it really affected my palpitations in my chest, my confi dence. On more than one temperature went sky-high and occasion people thought I was I felt very nauseous and close collapsing due to a drug to losing consciousness. The overdose. This was extremely nurses looked very concerned upsetting and sometimes stopped and quickly put the table back people from wanting to help. to the lying position. I was given time to recover and then the My Mum and I went back to doctor came to see me. He the doctors, and this time we explained that it was quite decided we were not going to worrying that I hadn’t lasted leave until something was done. very long on the tilting table test, I was referred to a hospital in and that I had Neurocardiogenic My name is Christie Hamilton Gloucestershire where I was Syncope. and I am 23 years old. When I investigated for epilepsy. I was was 19, I was diagnosed with told that I didn’t have epilepsy After asking him to say it again Neurocardiogenic Syncope. and I was referred on to another and again I fi nally grasped how hospital. On my fi rst appointment to say the name of the condition! I had suffered with blackouts I had a chat with the specialist Part of me felt upset because (loss of consciousness) for and he explained that at my next it confi rmed that there really was years, but when I hit 17 the appointment they would carry out a something wrong with me – but blackouts seemed to become part was just relieved that my more frequent and more severe. few tests. condition had a name and could Sometimes I would lose consciousness for long periods hopefully be treated. of time and on other I decided to change That was only the occasions I would beginning: there was still a regain consciousness consultants to get a second opinion as I long way to go. The next as soon as I made didn’t feel that the medical professionals stage was to try and fi nd contact with the ground. medication and a dosage Apart from standing I was seeing really understood how much that would be suitable for long periods of it was affecting my life and my well-being. for me and would stop time, I was not aware the syncope attacks of any possible triggers. (blackouts). In my teens I was told by my GP This next appointment was quite that I was just prone to fainting frightening, as I didn’t know what to At fi rst I was given some and was often asked if I was expect. I was told that I would be medication to take, which is a eating enough or not sleeping taking the ‘tilting table test’. I beta-blocker. I began to fi nd properly. As time went by my walked into a small room that it hard to breathe and I was blackouts became more and more housed a bed and a few machines. becoming very ‘wheezy’ so frequent and I would collapse I was told to lie on the bed and a I went back to the specialist numerous times a day. It was very nurse connected me to an ECG who stopped these tablets and frustrating and I often had minor machine. Then I was strapped then prescribed Fludrocortisone. down by my legs, waist and arms. injuries from falling. There was no difference in my The bed was then tilted to about condition, so over the few As you can probably imagine, my whole life was starting to be affected. I couldn’t keep a job, because my condition was not Reassuring…………? diagnosed so it was hard to Did you know that, according to a survey conducted by the Medical convince employers that I was Defence Union, fainting is the most common condition for a doctor absent from work legitimately. I was very unsure about going to stop and help with. 44% of GPs questioned and 41% of hospital out with my friends, because if doctors had acted as a good samaritan on a number of occasions.

01789 450564 www.stars.org.uk [email protected]

12 months my dosage was increased opinion this wasn’t good enough. feel in control any more and gradually until it couldn’t be it was putting a strain on my increased any more. Last year (2007) I experienced a relationship, social life and work. severe blackout and was taken Six weeks after consulting my When I was taking the maximum to hospital. A week later I had doctor about my decision, I was dosage I began to see a slight an appointment with my new at the hospital waiting to go down difference. My attacks had consultant who couldn’t believe to surgery. I have never felt so become less frequent, although how long I had suffered and the scared, but the nurses, doctors and I was still collapsing on average severity of the blackouts. He surgeon were all so nice and 3-4 times a week. I was then told also took into account how I had, reassuring. had to change my It actually terrifi ed me, as far as lifestyle and wasn’t After 3 hours, I was out of the bubbly, outgoing surgery. My operation took I was aware it was only old people person I was slightly longer than normal as that had pacemakers. before. I was very there were a few complications: depressed. my veins are very small which made it harder to direct the to decrease the dosage of the That’s when I was fi rst told about pacemaker wires through. Fludrocortisone and start taking the possibility of having a Fluoxetine. As my blackouts were pacemaker fi tted. I must admit After surgery I was in quite a becoming less frequent I started hearing ‘pacemaker’ didn’t make lot of pain and the pacemaker to work again, although only part- me jump for joy. It actually kept pulsing (this is what time as it seemed my body couldn’t terrifi ed me, as far as I was aware happens when your heart rate cope with the pressure of full-time it was only old people that had drops and the pacemaker work. pacemakers. regulates it again) which was very strange. The next day I Over a year or so, the dosage of My consultant explained the pros was able to leave hospital but both medications increased and and cons of the operation, which I was told not to lift my arm for 6 decreased. I was still having quite confused me even more. I was weeks as the wound needed to bad attacks and was told to start told that there was a chance the heal on the outside and inside. taking Slozem capsules as well! pacemaker wouldn’t work because Over the next few weeks the Taking all the medication was I have low blood pressure: the pain started to fade and I began really getting me down as I was pacemaker wouldn’t change that, to feel more comfortable when taking up to 4 tablets a day. which meant I could still black out. my pacemaker started to pulse. I didn’t feel that the Slozem I carried out some research on the capsules were making a difference internet and found that there were Three months on, I’ve had my to the frequency of my attacks so many people whose blackouts all-clear from the hospital, I’m so I stopped taking them. had stopped after the operation back at work (working full-time) – however, I also found that some and I haven’t had any blackouts I decided to change consultants people had to have the pacemaker or symptoms. I feel that I have to get a second opinion as I didn’t taken back out again as it didn’t fi nally got my life back and I can feel that the medical professionals work or the body rejected it! do normal things without worrying I was seeing really understood about blacking out. how much it was affecting my Taking everything into account, life and my well-being. Yes, my I decided to go for the operation. Christie Hamilton blackouts were not as frequent but I didn’t want to have syncope Bristol I was still having them, and in my running my life forever. I didn’t The Nintendo Wii and Pacemakers We often receive enquiries regarding the use of mobile telephones and pacemaker and the latest has been the use of the Nintendo Wii. Following investigation, we can report the following…

“The advice received from the device manufacturing companies is that patients with pacemakers are OK to use Wii but are advised to keep the pacemaker nine inches away from the radio source.”

We hope this will allay any concerns some of our members may have.

01789 450564 www.stars.org.uk [email protected]

13 CHARLES ALEXANDER LOBBAN 20 January 1950 – 3 April 2008

Sadly on 3rd April 2008 Charles Lobban died suddenly and unexpectedly at home from sudden cardiac death.

As the longest serving employee of the charity, other than Trudie of course, I have been asked to write this tribute to Charles. He was a man of many hats – husband of Trudie, father to Charlotte and Francesca, son and brother, and a dear and much respected colleague of us all here at STARS.

Charles’ career was spent in banking After leaving Aberdeen University in 1972 he stumbled on banking when he was leaﬁ ng through the A-Z of careers and joined Lloyds Bank in Bristol! He married Trudie in 1984 and became one of the youngest bank managers of the time when he was promoted to Manager at Lloyds, Warwick, followed by Shipston on Stour and then Stratford upon Avon. This was the start of one of the most successful and respected husband and wife teams.

I ﬁ rst met Charles when Trudie and I were pregnant at the same time with our eldest children. Along with my husband he was being ‘encouraged’ (how Trudie does!) to attend anti-natal classes so he could be useful during the birth! From the day Charlotte was born, Charles was always there for Trudie. Without his support over the years Trudie would not have been able to get through the challenges they have faced together. Trudie was the envy of all our girlfriends who had young children because she just had to pick up the phone if there was an emergency and Charles arrived – just like Superman.

This ‘Superman’ label stayed with him! When Charles reached 50 and after 27 years at Lloyds Bank, he decided it was time to ‘retire’ – however he found himself working harder after retiring than ever before! He began helping Trudie ﬁ ll time with STARS, which had been established some years before and run from home, and he was soon working full-time. Five years ago when Trudie launched Arrhythmia Alliance he was by her side and as a volunteer he gave his time 24/7, 52 weeks of the year, never complaining. The busier STARS was the more Trudie and all of us relied on Charles.

I don’t think either Trudie or Charles had any idea of ‘the monster’ they were creating – reaching out worldwide, the birth of STARS US – but neither he nor Trudie had any regrets, though their family time was affected. Charles enjoyed the work very much and was always so pleased to see the difference the Charity was making to so many lives. Trudie established STARS at the request of Prof John B. P. Stephenson when Francesca was diagnosed with RAS at 3 years old.

Charles could be a hard taskmaster and was a stickler for detail (goes back to his banking days no doubt!) but he was always willing to help anyone who asked. He got on with whatever was thrown at him (literally sometimes!) and did everything to the best of his capability. He was always smiling and very placid. He was a pro at appearing to agree with you, and then just doing what HE thought was best! Something Trudie experienced on quite a few occasions!

At the service to celebrate Charles’ life there were hundreds of friends and colleagues from all areas of his life which demonstrated how much Charles meant to so many. Trudie went up to one doctor and thanked him for attending and he replied “I came for Charles, we all have so much respect and admiration for him.”

To conclude, Prof John Stephenson, upon hearing of Charles death, and whom she called when Charles died, said “From everything I know, when the heart stops as Charles’ did, his experience would be of the greatest wonder of heavenly beauty, of uplifting light – of course we cannot know what happens then, but my guess is that this ecstasy seems to last for ever.”

This is the thought that we must all hold close to our hearts – Charles is not suffering, he is at peace. We all miss him so.

Jenni Cozon

Trudie, Charlotte and Francesca would like to thank all those who attended the funeral, sent ﬂ owers, cards and messages. Autonomic function in children

The University of Nottingham is organising a research project to develop a testing procedure for children and young people who might have syncope.

If you think you might like more information about the research then contact [email protected], referring to this proposed project and giving permission for us to pass your contact details to Dr Whitehouse and his team. You can also write to

Trudie Lobban Founder and Chief Executive STARS PO Box 175 Stratford-upon-Avon Head-up tilt measurement CV37 8YD The research will form the basis of a medical student dissertation, for their BMedSci degree, and will help us try out different ways of testing autonomic function in children and young people from 6-17 years of age.

Patients from the children’s Syncope Clinic in Nottingham will be recruited to try out the procedures. There is nothing painful (no needles) but the volunteers will have various monitors on and do various things, including lying down, standing up, lying on a tilt table, which after 15 minutes is tilted head-up etc. The whole thing might take a couple of hours, and will be repeated the next day, to see how reliable the results are!

At this stage we want to try the tests out on people we know have neurally mediated syncope, ideally those who have already had a “positive” Head Up Tilt (HUT) test. But anyone who has had their usual symptoms triggered by HUT testing would be good for the project.

We have Research Ethics Committee approval and support from the University of Nottingham, and the project will start in October 2008. Heat rate ECG measurement send you information sheets for parents / guardians, If you think you might want to help or would like to teenagers, as well as for younger children. know more, then you can contact Dr Whitehouse through STARS (see above). To be included you Dr William Whitehouse could be referred to the children’s Syncope Clinic by Clinical Senior Lecturer in Paediatric Neurology your doctor, then we could review your condition and University of Nottingham explain more about he project before ﬁ xing the dates for the testing. We could also see you after to go over the Jenni Sanders results and for you to tell us what you thought of it all. Medical Student We can send you more details. If you like, we can University of Nottingham

01789 450564 www.stars.org.uk [email protected]

16 All in a day’s work for STARS Friday 13th June, what a day – from a balloon launch in the morning to a Grand Charity Dinner and Dance in aid of STARS in the evening!

Following a wonderful morning releasing 200 balloons for STARS, I went off to complete the ﬁ nal preparations with our co-organisers Mr Darren and Mrs Tracey Kelly for the dinner and dance.

We had more balloons to infl ate; the raffl e and auction prizes to organise - of which there were many which had all been very kindly donated by local STARS Patron William Whitehouse with Bridgette businesses and friends; and then of course the venue! Throughout the evening there strength to strength. To top it all was entertainment, fi rst from a we had arranged for a strolling The dinner dance was to be band called ‘The Infi dels’ during magician and he certainly kept held in Jocastas in Lincoln, which which Jack (my youngest) danced everyone both amazed and in offers a marquee. By 6pm tables by himself on the dance fl oor fi ts of laughter whilst relaxed were set and candles lit ready to the delight of everyone! After at their tables. for the event to start at 7.00pm. this we held the raffl e and auction Within just thirty minutes every- and to our delight everyone By the end of the night everyone one was present and ready to present was so generous! We was thanking us for the wonderful eat! We had chosen the ‘hog had been donated prizes such evening and all hoped we will do roast’ followed by a choice of as vouchers for £250.00 from it next year. It was very hard several desserts. a local PVC company; tickets for work to organise, and we did it Kylie Minogue at the O2 arena; in just 10 weeks, but the rewards, a show and 5 star hotel break in pleasure, fun and amazing fund London; a day in a raising for a charity so close to music studio cutting my heart was well worth it. Plus your own disc; a round the knowledge that I have been of golf for 4 people at instrumental in both raising funds Blankley (very nice!); AND raising awareness of RAS even a PVC front in the Lincolnshire area – YES! door including fi tting! It was defi nitely worth all the hard Along with many work! other lovely gifts. Bridgette, Paul, Craig, Karl and Jack Nottingham After the excitement Lincoln of this the disco began, pausing from STARS would like to thank time to time for the Bridgette and her family and band to hold another friends who all worked so session; the dance hard on these two projects fl oor was never and raised in excess of £2700 empty and the – a truly staggering amount! evening went from Jack with his Dad and the shirt! Thank you

01789 450564 www.stars.org.uk [email protected]

17 Postural Tachycardia Syndrome (POTS case studies, including POTS, Pregnancy and Baby, can be viewed on STARS website http://www.stars.org.uk/html/pots.html) Since STARS was fi rst launched Some patients are so incapacitated can suddenly develop symptoms some sixteen years ago, there by their symptoms that they are following a viral infection or has been a substantial increase often misdiagnosed as having severe shock. Some autonomic in the understanding of illnesses chronic anxiety or panic disorder specialists believe that there may that result from disturbances in or, worse, being told that it is be an overlap between people the autonomic system. all ‘in their head’. with POTS and some individuals suffering from chronic fatigue Many consultants were seeing What are the symptoms of syndrome. patients with vasovagal syncope POTS? but some were fi nding that they had What help is there? patients who were also presenting The main symptoms of POTS can with postural tachycardia (a very include: Some sufferers become debilitated fast heart rate that occurs after and fi nd it impossible to continue you stand up), severe fatigue and • Chronic dizziness working or struggle to attend school exercise intolerance. • Light headedness on a regular basis. This can cause • Severe unrelenting fatigue depression and it is essential that These people were told they were • Migraine they have the support and suffering with POTS. • Insomnia understanding of their doctor. • Palpitations Cognitive Behaviour Therapy (CBT) What is POTS? • Blurred vision has proved to be very successful • Weakness in helping a patient come to POTS is a chronic condition which terms with this often overwhelming can vary in degrees of severity However, some patients will also condition and to help them on a daily basis. Some days, a complain of: manage their lives. patient with severe symptoms will have to lie down for the whole • Anxiety Some specialists do prescribe day, unable to function. Many • Loss of concentration medication and in previous issues patients fi nd themselves initially • Shortness of breath of the STARS newsletter members house-bound due to the • Coldness of legs and fi ngers have talked about Midodrine symptoms. • Body temperature regulation helping them lead a more normal issues life. There are severe, moderate and • Hyperventilation or very fast mild cases of POTS. No two breathing that can result in loss Researchers are attempting to patients are the same and no two of blood pressure and fainting identify and treat the causes of cases respond to treatment the POTS. Studies are showing that same. Who suffers with POTS? patients will eventually suffer fewer symptoms, less frequently. A common feature is the inability Most sufferers of POTS are between 15 and 50 years of age, It needs to be recognized that to stand up from a sitting or POTS can be quite disabling for lying position without experiencing but it can strike at any time. Research has shown that the patient and very stressful symptoms (orthostatic intolerance). for their family. There is no one Complaints of tachycardia, approximately fi ve times more females are affected by POTS treatment for everyone and migraines, palpitations, tremor, sometimes it is a case of trial and nausea and insomnia are than males, and, sadly, some sufferers wait a year before error, but patients should never mentioned time and time again. lose hope - hope is a powerful Some also experience syncopal plucking up the courage to medicine that should be nurtured. attacks. talk to their doctor – afraid they will be thought to be At times sufferers can be severely making a fuss. Developmental limited as to what they can POTS affects adolescents. STARS thanks Blair P Grubb, MD, do. Housework, showering and Often beginning around age Cardiology, Medical University of even eating can exacerbate these 14, peaking at 16, then slowly Ohio for his support by providing symptoms. Many patients fi nd fading in young adulthood. It can information for this article. menstruation and exposure to occur typically after the onset of We also acknowledge the work heat and humidity an aggravating puberty and sometimes following and advice of Debra Dominelli; factor. a period of rapid growth. Patients www.dynakids.org

01789 450564 www.stars.org.uk [email protected]

18 NNEWEW SCHOOLSCHOOL TTERMERM OORDERRDER YOURYOUR PACKPACK NOW!NOW!

STARS Syncope and RAS Alert Cards are now available in packs of twenty, at the low price of just £1.00

Seizures Refl ex anoxic cal NAME: Trust And Syncope s, families and medi They are popular with all ages because of the I suffer with Refl “working together withfer individual support and information on (this is not connected to epilepsy ex andAnoxic is NOT Seizur zures” es simple manner in which they inform and professionals to of ex anoxic sei Please make sure I am safe life threatening) syncope and refl Please put me in the recovery positi protect. Admin: +44 (0)1789 450564 Please talk quietly to me and wait foron me 0800 028 6362 to regain consciousness (normal Freephone: ly only 1 or [email protected] CALL IMMEDIATEL 2 mins) Email: Y: Just the size of a credit card, the STARS Alert www.stars.org.uk Web: If injured or concerned also call for EMERGENCY SERVICES Cards provide key information for new carers, - 999 work colleagues, family friends, schools and the general public and so help YOU!

To order, contact either [email protected] or [email protected] SSHINEHINE A LIGHTLIGHT ONON EDUCATIONEDUCATION 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. 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

STARS SYNCOPE Feeling Faint MESSAGE BOARD but nowhere to sit? We have recently had our attention drawn to a number of unsettling postings on the STARS syncope Cross your legs, put one ankle over the message board. We had opened up the board in other, then tense the muscles of your hips, good faith to welcome more members to share their thigh and bottom. Fainting occurs when experiences but obviously this was not successful. blood fl ows from your brain and into your Please rest assured that the board will continue legs. “This move relocates pooled venous to be moderated but now it will be open to STARS blood back from the region under the subscribers only. We will continue to offer help and diaphram to the chest” says STARS advice to all our members but those of you who Patron, Dr Wouter Wieling, from Amsterdam’s choose to become a subscriber will have access through a password to the Subscribers only area on Academic Medical Centre. “The heart can the website and will also be able to download our then pump the blood more readily to your leafl ets whenever they are needed. Back copies brain staving off the fainting feeling - at least of the newsletter will also be available to view. until you can fi nd somewhere to sit down and recover.”

01789 450564 www.stars.org.uk [email protected]

19 STARS Flies High To Raise Awareness! Using biodegradable balloons and tickets, STARS members shone as they helped to sell and launch over 3000 balloons across the UK during this year’s Arrhythmia Alliance Awareness Week, which ran from 9th – 15th June 2008. From Scotland to Poole, Kent to Northern Ireland then Lincoln through to The Midlands and Bristol, STARS balloons ﬂ uttered into the skies. The event was launched to raise awareness of Syncope, Reﬂ ex Anoxic Seizures and Vasovagal Syncope, but in fact was so successful it has also raised almost £1000 for STARS. Local Events

Courtesy Stratford Herald

Stanton Drew Primary School Prontaprint Ilmington C of E Primary School

Stanton Drew Primary School was one of Prontaprint, our printers rounded off a The children of Ilmington C of E Primary the fi rst schools to ask if they could release fantastic week, with a launch from their School hosted one of the fi rst launches some balloons for STARS. As it is Jo offi ces in Stratford upon Avon. Many of AAA Week. As an award winning eco- Jerrome’s local school she went along thanks go to Alex Graham and his team. friendly school, they were delighted to and joined in the fun too! She would Present in the photo is Trudie Lobban, help as all the balloons were bio- love to be invited back next year for Laura Nelson, Simon Woodings and degradable. It is our AAAW Co-ordinator, 2009 launch! Alex Graham. Laura Nelson’s local school and she is pictured with the children.

NNEWSEWS FLASHFLASH ...... Winners of STARS Great Ballon race have just been released:- Many travelled hundreds of miles, being found across the UK and into France, Belgium, Denmark and Germany! Even more amazing the winning balloon travelled over 700 miles! So, well done to the ﬁ rst prize winner James Adams

Hansen Amnkadhklein of Germany found the winning ticket.

Almost 3000 balloons were sold during this awareness raising event, so many STARS members joined in, with quite a number selling well into the hundreds!

However, the ﬁ rst prize to the member who sold the most balloon tickets goes to Catherine Reid from Northern Ireland!

Well done to Catherine, and thank you to everyone who helped make this such a success!

01789 450564 www.stars.org.uk [email protected]

20 Thank you…..STARS Although it has not been long since our last newsletter landed on your door mats, you have all been so busy raising funds and increasing awareness that there are many of you to say thank you to. STARS Balloon Race supporting AAAW ‘08

This event caught the imagination of We still have more of you to thank, however! everyone. The collage of photographs on You are all full of such good ideas to raise money. the front page tells the story! Thousands We are also aware that there are lots more people of red and white balloons fi lled the skies who have forgotten to send us a photograph and during the second week of June. Many of a few lines on how they have been fundraising our members supported us by selling for STARS - we would love to hear from you in the balloons but we must say an extra special time for the next edition! thank you to the following who held parties, entertained the press, and persuaded their • Christian Burge who chose to run the Jurassic Ultra local school to join in the fun (the children Marathon, 78.6 miles over 3 days. loved it!). • Debbie Castley who ran for ‘her boys’ and raised over £500. • Stanton Drew Primary School • Pat Bennett who keeps a collection box in her house for visitors. • Bridgette Nottingham and Meadows Primary School • Margaret Adams raised nearly £300 running a 10k marathon. • Cathrine Reid • Rachel Sealey has raised over £100 giving facials and selling bracelets. • Julie Fear • Robert & Jane Naylor for raising the profi le of STARS at the Rutland Agricultural Show in June and nominating • Prontaprint STARS as their chosen charity for a Golf Day. • George Stephenson High School at Killingworth, • Jane, David and Jennifer Mackay with huge North Tyneside who chose STARS as their support from North Lanarkshire Shopmobilit designated charity and ran a Euro 2008 Fantasy and Hunters Quay Caravan Site Football competition as one of the events. Lots of fun was had judging from the comments on • Ilmington C of E Primary School their Just Giving Page. • Daniel Ambler who raised in excess of £600 by • And to our ‘Centurian Champions’, walking the Leeds Liverpool Canal in its entirety – Kate Smith, a mere 127.25 miles – in 4 days! When he fi nished besides, thank you, all he could say was ‘my feet Nikki Gill hurt, my legs hurt, in fact most of my body hurts! Jenny Bull and Joan and Rocco Laamaim, • Naomi Fear and Royal Manor Arts College of who each sold hundreds of balloons Portland, Dorset who had a non-uniform day and raised hundreds of pounds for three charities, one of which was STARS!

Thank you from all of us to all of you who have spent so much energy, enthusiasm and time raising money in order that we can continue to support the sufferers of RAS and syncope and their carers. SSTARSTARS CConferenceonference 2002008 Don’t forget to register for the STARS Conference and Regional Meeting.

For more information visit www.stars.org.uk

(843)01789 785-4101 450564 www.stars.org.uk [email protected]@stars.org.uk

21 COMING SOON!!!!!!!!!! STARS new and improved website will be LIVE in August. This website has been designed to better serve you. Once up we would love your feedback. Feel free to send comments and ideas to Rebecca Smith [email protected]

We will notify all of you when it’s LIVE.

STARS Donation Card P.O. Box 5507, Hilton Head, SC 29938 Name: ______

Address: ______

CITY: ______ST: ______ZIP: ______

Telephone: ______E-mail: ______My Donation to STARS

Please charge my gift in the amount of: $25 $50 $100 $250 $500 other ______

I wish to pay by using Mastercard Visa Amex Other ______

Card Number Expiry Date 3 digit security code

Please ﬁ nd my enclosed check in the amount of $ I would like information on volunteering for STARS I would like to host an event for STARS Signature Date

You may be eligible for a matching gift to STARS. Ask your employer if they offer a Matching Gift Program.

(843) 785-4101 www.stars.org.uk www.stars-us.org [email protected] 7 STARS educational materials available for distribution

To educate and increase awareness of Syncope conditions, STARS literature is available to distribute to doctors ofﬁ ces, hospitals, schools, friends and family. LITERATURE AVAILABLE

STARS Awareness Poster Do you or someone Blackout Checklist suffer from fainting or youbla know ckouts? STARS Brochure STTARSARS

SSTARSTARS Working together with indi vidual SSTARST professionals to o s, families and med AR ffer support ical on Synco and information S Working together with individuals, families and medical professionals S pe condi er Working t tions ff to offer support and information on Syncope conditions. ST als to o ogether with i ARS offers: AR rofession to off ■ T ical p er support ndividual Information and Reports Help ful P S itions. and infor s, families and med ■ ublicati STARS Toll-free o ns s, families and medpe cond mati helpline ■ Syncope: T : on on ical pr ■ Youth Helpline ypes, Causes, ndividual Syncope co ofe Tre atments and More her with i formation on Synco nditions.ssionals ■ oget rt and in Newsletters ■ Refle king t suppo x Anoxic Seizur Wor ■ Monthly e-bul ■ es letin Blackouts Check ■ Timely information ■ list Vasovagal Syncope message boar and a moderat (Neurocardiog Vasovagal Syncope d on www ed Syncope enic Sync ■ Ask the Expert .stars-us.or All of S ope) g TARS’ liter ■ approved b ature has b Regional, National and Int y a panel of een (Neur internationa ocardiog ernational meeti l medical experts. enic Syn ngs cope, Refle Reflex Anoxic DID YOU KNO x Syncope) W? ■ It is estim ated that loss of c Seizures 50% of the onsciousness w populat ill affec ion at som t up to e stage in th ■ eir life. Syncop e is the most com consc mon cause of lo iousness. ss of ■ Sync opal episodes ac 3 count fo % of hospital adm r 6% of ER visits an issions in d up t the U.S. o ■ Due to a si milarity in symptom misdiagnosed as e s, syncope can o pilepsy. 30% ften be children are m of adults a isdiagnosed nd 39% of are actuall with epilep y suffering w sy, many of w ith syncope. hom

www.stars-us.or Reﬂ ex Anoxic Seizures g (843) 785- www.stars-us.org 410 www 1 .stars-us.org .stars-us.org Syncope www Vasovagal Syncope Improving Syncope Suppport and Education in Communities Across the Country How can we improve support within your community for individuals who suffer from Syncope?

STARS, with the support of it’s ‘advocates’ has STARS important educational information is being recently engaged in a special project. This dispersed to hospitals, the medical community project involves developing new community throughout the nation. Syncope Awareness Days relationships as well as offering educational are being planned with the goal to bring medical workshops to community professionals, and professionals, sufferers and their families together Syncope sufferers throughout the United States. to educate and offer support and guidance.

If you are interested in distributing STARS educational material or if you would like to see a Syncope Awareness Day in your area please call Rebecca Smith, (843) 785-4101 email - [email protected]

(843) 785-4101 www.stars.org.uk www.stars-us.org [email protected] 6 A family’s experience with Reﬂ ex Anoxic Seizures (RAS)

The paramedics arrived and they Over the next couple of months, whisked us away to the ER. By he had several episodes that the time we got there, he was ended in a seizure. I didn’t fi ne. We stayed at the hospital understand them and looking for a long time, while they ran back, didn’t handle them right. different tests and completed a I thought it was behavioral, didn’t CAT scan. The whole time we recognize the triggers, and got were there, I was ok. I kept my more and more scared as the fear in check. I thought I was only answer I could get was “he’ll ready for any diagnosis they outgrow it.” could throw at me, until a nurse came over with discharge papers Finally, I turned to the internet, and because “there was nothing found STARS. STARS was the wrong with him.” only group committed to advancing research into this disorder, and That’s when I lost it. My baby after a few emails with Trudie I My name is Adrian and I’m the had stopped breathing! He had began to get a better understanding mother of a now almost six a grand-mal seizure! How could of what was going on with my son. year old boy who had his fi rst there be nothing wrong? They episode at 15 months. He was recommended I make a follow up My son will be 6 this September following his cousin down the appointment with his pediatrician and hasn’t has an episode since hall when fell down. He didn’t and sent us home. May ‘07. I think that he fi nally has get up and started to writhe on “outgrown it”. I am very grateful the fl oor. He turned purple and The pediatrician was concerned, to STARS and especially to then blue. He wasn’t breathing and sent us to a pediatric Trudie, because if it wasn’t for this and he passed out. I called 911 neurologist, who did some studies organization there would have and got ready to try baby CPR. and ran some tests and fi nally been nowhere to turn for support I was so scared! He woke up but gave the diagnosis of Refl ex and information. was very disorientated. He was Anoxic Seizure. I had never crying for me and even though heard of it. The doctor sent us I am very glad that there is now I was right there next to him, home with some materials and a US chapter and I hope that saying his name and trying to the assurance he’d “grow out more will be found out about calm him, he didn’t seem to of it.” RAS and other types of Syncope. recognize me. Introduction of new board members STARS would like to introduce our new Board Members

Cindy Tobin, RN, MSN, NP-BC Vera Novak, M.D., Phd Fetnat Fouad Tarazi, M.D., Phd University of Michigan Director SAFE Laboratory Cleveland Clinic/ Ann Arbor, (Syncope and Falls in the Elderly) Syncope Clinic Michigan Boston, Massachusetts Cleveland, Ohio

(843) 785-4101 www.stars.org.uk www.stars-us.org [email protected] 5 A Night for STARS To Beneﬁ t STARS-US

Hollywood, Florida, June 10th, 2008 silent auction to include luxury “I’ve suffered from Reﬂ ex Anoxic - ‘A Night for STARS’, hosted by items, all to beneﬁ t STARS-US. Seizures, a form of Syncope, since the posh and popular SAS Martini October of 2003. It is a life altering Bar, was an evening to remember. Dawn Holt, a STARS advocate and medical condition with no cure. Special ‘Star Martinis’ were served. event chair stated; “My involvement RAS affects not just the individual Guest enjoyed live music and a with STARS is a very personal one. but also their family and friends. Unfortunately, not many Doctors or medical professionals know how to treat this or even diagnose these conditions. That is why I wanted to plan and host this event. It has brought awareness of this condition to those who otherwise had no idea what Syncope is. I hope others will follow my example and host an event in their town. It is so important to increase awareness and if we are able to educate one or two people it is all worth it.”

We at STARS would like to thank Dawn and her committee for all of Event Committee - Kristi Huddleston, Melyssa Bernstein, their hard work and diligence in Dawn Holt, Carrie Jean Weekly. planning this successful event!!!!!

The Party Silent Auction Table

(843) 785-4101 www.stars.org.uk www.stars-us.org [email protected] 4 A STARS Reunion

Many Syncope sufferers and their family Suzanne, Juanita, and “Peanut” met for lunch and members enjoy the online message board. began the STARS “family” bond up close and They get to know each other, help each other personal. Juanita said, “It was as though I had through tough times… they become family. known Suzanne forever, as if we were family Well, a few of these “family members” had a reunion!!! that hadn’t seen each other in years”.

Juanita and Peanut Peanut and Suzanne

To participate in the online message board visit our website, www.stars-us.org

If you and your child would like to participate in the youth message board visit, www.education.stars.org.uk

Happy Birthday Kelsea

We would like to wish Kelsea Davis a Happy Birthday and to thank her for her unselﬁ sh act. Instead of birthday gifts she wanted her friends and family to donate to STARS.

Kelsea you are truly a special young lady!!!!!

(843) 785-4101 www.stars.org.uk www.stars-us.org [email protected] 3 Christine’s Story questions which I could not may be no help for me. I was answer. Finally, the Doctors told wondering if it was “all in my me I had fainted and suffered a head.” My life seemed to be concussion. I went home later that doomed, not being able to drive, day and assumed that the faint not being able to work and being was due to stress from work and injured during the ‘episodes’. At the wedding. this point I was fainting almost four times a week. I have suffered Over the next few days I continued so many concussions and broken to faint with no warning signs. bones, that now I never go to the I was getting injured each time. hospital because I know the I fi nally told my parents that I treatment for each injury. needed to see my regular physician. I explained to my doctor what was Finally my Cardiologist sent me happening and she said it was to see an Electrophysiologist in just stress and I should see a Ohio who has been my saving psychiatrist. I was so mad grace! He diagnosed me with a The summer of 2004 was supposed because I could sense that it was condition called Postural Othostatic to be a time for me to celebrate. I not just stress and I wanted her Tachycardia. had a great job that I loved and I to take me more seriously. was getting married in September. I am taking medication to help I saw a neurologist who ran some raise my blood pressure and I also I felt like I had everything and was of his own tests and realized that have a Biotronik Cylos Pacemaker. so happy, until one day my life this was out of his fi eld. So then I I am still fainting, but I know one completely changed forever. went to see a cardiologist and I was day I will get better. It helps to know diagnosed as having Vasovagel that I am fi nally on the right track. In July 2004, I woke up one day Syncope, (VVS). The problem and started on my daily routines. I was that he wasn’t sure what was One thing I learned from my was going down some stairs, and causing it. I went through a slew experience in dealing with Syncope that’s the last thing I remember. I of tests; the tilt table test, wearing is to NEVER give up! Fight for had fainted and when I woke up holter monitors, having EKG’s, your health, and make sure you I had my mom by my side with EEG’s. The tilt table test showed feel confi dent in your Doctor. the most panicked look I have that when I fainted my heart rate ever seen and will never forget. did decrease a little as well as I am so thankful to the people my blood pressure, but he still at Stars for making Syncope I remember being in an ambulance, wasn’t sure why this would cause known to the public and to help strapped down and my neck me to faint, since these were not those who are suffering. restrained by a plastic brace. extreme drops. Everything was spinning and I felt so sick. I was rushed into the At this point I was getting very Christine ER and was asked a slew of depressed and scared that there Warwick, Rhode Island

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(843) 785-4101 www.stars.org.uk www.stars-us.org [email protected] 2 SEPTEMBER 2008 ISSUE 2 WORKING TOGETHER WITH INDIVIDUALS, FAMILIES AND MEDICAL PROFESSIONALS TO OFFER SUPPORT AND INFORMATION ON SYNCOPE AND REFLEX ANOXIC SEIZURES STARS participates as an exhibitor in the Heart Rhythm Society’s 29th Annual Scientiﬁ c Sessions

The Heart Rhythm Society is the international leader in science, education, and advocacy for cardiac arrhythmia professionals and patients, and the primary information resource on heart rhythm disorders. Its mission is to improve the care of patients by promoting research, education, and optimal health care policies and standards.

The Heart Rhythm Society’s Annual Scientiﬁ c Sessions, is the most comprehen- sive meeting of the year for heart rhythm professionals eager to learn more about the adoption and integration of emerging science and technologies.

Thousands of Heart Rhythm Specialists attend this session and STARS was an exhibitor for the three day event, connecting with specialist and introducing them to STARS and our

Rebecca Smith, Executive Director, STARS-US ever so important mission.

The session was a success for STARS as we established relationships with hundreds of Heart Rhythm specialist throughout the nation. Since our return we have been busy mailing out our important educational materials to all who requested for their clinics, hospitals and private practices.

(843) 785-4101 www.stars.org.uk www.stars-us.org [email protected]