STARS Issue 24, January 2006

The uts o k c Bla rust T JANUARY 2006 : ISSUE 24 WORKING TOGETHER WITH INDIVIDUALS, FAMILIES AND MEDICAL PROFESSIONALS TO OFFER SUPPORT AND INFORMATION IN SYNCOPES AND REFLEX ANOXIC SEIZURES

Happy New Year Issue!

REFLEX ANOXIC SEIZURES are 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.

SYNCOPE (pron: sin-co-pee), also known as Transient Loss of Consciousness (T-LOC) or blackouts, is a result of the temporary cutting off of the supply of oxygenated blood to the brain. The mechanism of the syncope in susceptible individuals includes 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.

STARS Freephone 0800 0286362 +44 1789 450564 www.stars.org.uk trudie@stars.org.uk PO Box 175, Stratford Upon Avon, Warwickshire, CV37 8YD, UK

As we say goodbye to 2005 we also say farewell to Tania who was the first editor of the restyled STARS newsletter. For the past two years she worked tirelessly for STARS and on behalf of everyone I take this opportunity to say thank you for all the work she has put into the newsletter and other areas of volunteering.

We now welcome two joint editors - Paula Fairweather, who is married with two children, the younger of whom has RAS. Paula has been a faithful volunteer for four years.

Her co-editor is John Watts, whose daughter, grand-daughter and, latterly himself, have been diagnosed with syncope. I hope in the next newsletter John will tell his story and the struggle to find a diagnosis.

If you would like to help STARS please note the volunteering opportunities on page 19.

2005 has been a very busy year and 2006 promises likewise. One date for your diaries is the STARS Annual Conference on 21 September. Details of this and how to register can be found in this newsletter and I urge you to book early as places are limited.

I am enclosing raffle tickets in the hope that you will be able to raise much needed funds for STARS. If you would like more books then just let me know!!

Finally, from all of us at STARS, Happy New Year and we hope to meet many of you at the Conference.

Trudie Lobban, Chief Executive

Patrons: Prof. John STEPHENSON, Dr William WHITEHOUSE, Prof. Christopher MATHIAS, Prof. Rose Anne KENNY, Dr Adam FITZPATRICK, Sir Roger MOORE, TWIGGY Lawson & John BURTON RACE Registered Charity No: 1084898

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Letter from Susan Broatch, Chair - Trustees I am delighted to welcome three new Trustees to the STARS board: Andrew Fear, Cathrine Reid and Professor Rose Anne Kenny.

Cathrine’s son has RAS and Andrew’s wife, daughter and father-in-law are all affected by syncope. Andrew and Cathrine have been passionate volunteers and supporters of STARS for many years, raising funds and awareness from local fundraising to national events.

Professor Rose Anne Kenny, a Geriatrician, is already a Patron of STARS and has pioneered a team-based approach to supporting individuals with syncope in her Falls Clinic in Newcastle. She will open a new Falls Clinic in Dublin very soon, and brings a wealth of medical knowledge to the Board as well as a professional commitment to improving the quality of life for those affected by syncope. .

We have said goodbye and many thanks to Jo Jerome, one of STARS original Trustees, who has stood down as a Trustee because of family commitments. This leaves five Trustees including Dr William Whitehouse and myself. We hope as a Board to be able to offer support to Trudie and her team as they work, week by week to provide STARS essential support and information services and as they seek to expand STARS Contents influence throughout the USA and Europe.

Letter from the Chair.............................. page 2 I was unhappy with the Diagnosis ........... page 3 Benefits of Patient Access ........................ page 4 Vasovagal Syncope ................................ page 6 Memory Loss ......................................... page 7 Wesley’s Story ....................................... page 8 Autonomic Nervous System; STARS ......... page 9 That Beer Thing ................................... page 10 STARS Annual Conference 2006 ........... page 11 It’s RAS ............................................... page 12 Neurocardiogenic Syncope .................. page 13 Dear Trudie ......................................... page 14 Jenny’s Story ....................................... page 15 Volunteers Descend on STARS Office ..... page 16 New Computerised Care Record System.. page 17 Just a Shadow of Merlin ....................... page 18 Raffle; Publications Order Form ............ page 19 Subscriptions and Donations ................ page 20 2

STARS Volunteer Training Day was very well attended in November, with volunteers working on developing a forward thinking plan for STARS. All the Trustees will be involved in developing STARS Strategic Plan, which seeks to create a clear vision and challenging goals for the coming years.

It is clear that STARS must work in partnership with everyone affected by syncope if we want to achieve what is possible in the future. Thank you for your support for STARS in 2005 and for your commitment, which will support STARS’ plans in 2006.

Susan Broatch

I was unhappy with the Diagnosis Thomas is the youngest child of five and was an unsettled baby, often not settling until the early hours of the morning.

When Thomas was aged four months he had his first episode.

My husband had gone to bed and I was trying to settle Thomas when suddenly he stopped crying, he was blue around his mouth and appeared to have stopped breathing, I shouted for my husband, who took Thomas from my arms, I can remember saying “What’s the matter with him, he’s not breathing?”

Thomas then spontaneously recovered. The episode had only lasted seconds. We put the episode to the back of our minds until Thomas had his next batch of episodes aged 6 months. Thomas was sitting on his big sister’s knee, having just woken from a short nap, and appeared grizzly. My eldest daughter had laid Thomas back to give him his bottle, when he stopped breathing.

My husband took Thomas who had his arms stretched out stiffly downwards to his sides.

He then became completely limp and floppy, just like a rag doll and was unresponsive. I thought that he was dying.

Thomas was taken to our local A&E dept. I don’t think I’ll ever forget that anxious ride.

Thomas was lying in the arms of the paramedic, an oxygen mask to his face, looking dea thly white and was totally unresponsive throughout the journey. We were taken to resuscitation where Thomas came round, spontaneously, a little groggy and sleepy but quite fine. After a sleep, he was back to his normal self.

Thomas was admitted to the children’s high dependency unit for overnight observation, and was discharged home the next afternoon.

The doctors explained that they

thought that it was some type of fit, and probably it would never happen again. But it did and that night Thomas was again admitted to hospital and was seen by a consultant paediatric neurologist a couple of days later.

I told the consultant about the strange episode that Thomas had had aged four months and the consultant said that it sounded like ‘breath holding’.

The consultant thought it best that Thomas was started on anti-convulsive medication, and I was given lots of information on seizures, epilepsy etc.

Thomas continued to have the episodes, although I felt confident to manage these at home and waited for the medication to take effect.

Thomas was poorly as, on top

eventually discharged home with an apnoea* monitor, that I insisted upon.

I was not happy with the diagnosis and I looked on the internet, for a solution.

It was there that I came across the STARS website.

I contacted Trudie who responded to my email remarkably quickly.

I was desperate for somebody to listen to me, who understood what we were going through. Trudie put me in touch with a consultant who would consider RAS when making a diagnosis. This consultant was fantastic. She took the time to listen to my husband and I and agreed that she thought these episodes were RAS. Hopefully

“when suddenly he stopped crying, he was blue around his mouth and appeared to have stopped breathing.”

Thomas will be weaned off his anti-convulsion medication by his second birthday.

Thomas with three of his siblings

of it all he had picked up a tummy bug whilst in hospital, could not keep anything down and so was admitted to hospital again. Whilst in hospital he experienced 5 attacks in one day and was moved from the children’s ward to the high dependency ward, and his anticonvulsive medication was increased rapidly over the next couple of weeks.

It was during this admission that I started to feel uneasy about it all.

Thomas was

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It has impacted on the other children too.

My eldest daughter, was holding Thomas during one of his episodes, and felt for a long time that it was somehow her fault. Although she now realises that this is just something that Thomas does.

Thomas is now one year old and is developmentally reaching his milestones; he is a happy and mischievous little boy although still experiencing episodes. I would just like to thank Trudie and all at STARS for raising awareness into this condition and providing parents with information.

I don’t know what I’d have done without STARS. The Mawson Family, Leicestershire *Breathing Monitor

Benefi ts of patient access How access to new medical technology is benefiting patients suffering from arrhythmia Trudie Lobban, a trustee of the Arrhythmia Alliance outlines some of the evidence she submitted to the Health Select Committee inquiry into the use of new medical technologies, and highlights the benefits particular technologies bring to the lives of patients. reflex anoxic seizures—any type of blackout or non-epileptic seizure. Syncope and RAS is a type of arrhythmia (irregular heart rhythm).

The Arrhythmia Alliance (A-A The Heart Rhythm charity) was formed in May 2004. The A-A is a coalition of charities, professional and medical groups and industry partners, including the ABHI, who aim to work together to promote timely and effective diagnosis and treatment of arrhythmias leading to improved quality of life for all those affected.

Left to right: Geoff Morris - Chairman ABHI; Jane Kennedy MP - health Minister; Jo Revell - The Observer; Trudie Lobban; Dr Steve Holmberg

The following is a summary of the written evidence that I submitted to the Health Select Committee inquiry.

I

had been asked to appear as a witness to the House of Commons Health Select Committee’s enquiry The Evidence into the use of medical technologies in the NHS, alongside John Wilkinson, but “The total cost of a was prevented from doing so due to pacemaker over its ten-year bad weather and life span can be significantly transport difficulties.

There is evidence that where the Department of Health has applied focus and funding, for example, through less than the cost of drugs National Service Frameworks (NSF) technology uptake I was due to for a patients life” has been higher, allowing appear on behalf of government targets to the Medical Technology be reached. For this reason, the additional Group (MTG), with whom I have been chapter on cardiac arrhythmias in the NSF involved for over a year. MTG is a on heart disease, published in March and campaigning coalition of patients groups, on which the Arrhythmia Alliance and STARS medical professionals and industry. My advised the Department of Health, has the involvement with MTG stems from my role potential to reap great benefits for patient as Chief Executive of Syncope Trust and Reflex access to technology.

Anoxic Seizures (STARS) and also a trustee of the Arrhythmia Alliance.

However, when the focus has been less concentrated, technologies that could save STARS works together with individuals, lives and reduce secondary care burden on families and medical professionals to offer the NHS, have seen significantly less uptake. support and information on syncopes and 4

The UK still spends less on technology compared to other less developed countries, as a proportion of total health care expenditure.

We also have a significant workforce shortfall.

For example, in cardiology, a key area of technical innovation, we have approx 650 cardiologists serving a population of 59 million. In France, Germany and Italy, each country has in excess of 6000 cardiologists. In the UK we have approx 60 Electrophysiologists (Heart rhythm specialists) - one per million of the population.

needs checking for most patients once or twice a year, freeing NHS capacity and improving quality of life for both patients and families.

The improvements in patients’ quality of life through medical technology can be enormous. Technology can provide increased life expectancy, a reduction in further complications, improved standards of living and productivity not only for patients but also for their carers and the people closest to them.

Peace of mind provided by accurate diagnosis and appropriate treatment is immeasurable.

Therefore I recommended to the Committee that patients’ input in assessing quality of life should be given a higher priority than is currently the case.

A more local problem is that budgeting decisions are often made with only a short term approach in mind. A benefit of many medical technologies is the avoidance or reduction of re-admissions to hospitals, particularly in emergency cases. However, these factors are often not taken into consideration when purchasing new technologies. The primary consideration for assessing their use is the initial outlay of costs and the impact on a specific budget. There is often a failure to recognise any saving that use of a technology can realise in other parts of the hospital or the Health Service.

The new system of Payments by Results should offer flexibility, but there is a concern that the tariffs upon which it is based may not be accurate enough to give a true reflection of the cost of treatment and care, which could threaten access to technologies.

One question from the Committee suggested that use of technology can shift care and treatment away from the clinical setting and that there might be some risk involved in this transfer. A key element for reducing this risk is the provision for accurate and timely information for patients, carers and medical professionals. Given the funding, support groups such as the Arrhythmia Alliance and STARS will work with all those affected by these conditions, including patients, clinicians, and industry ensuring that the advice and information provided to patients is accurate and of the highest standards.

Securing the publication of the arrhythmia chapter of the Coronary Heart Disease NSF was an example of successful campaigning by patient groups working together to convince the government to act. I hope that this enquiry leads to similar success.

As an example of efficiency gains through simple diagnostic measures and use of technology, Professor Rose Anne Kenny established a falls and syncope clinic at Newcastle Royal Infirmary, assessing the cause of all unexplained falls in older patients presenting at A & E. Falls result in huge costs to the NHS and many repeated falls are unexplained. They are often caused by arrhythmia and can be successfully treated with pacemakers. The cost of a pacemaker over its ten-year life span can be significantly less than the cost of drugs for a patients lifetime. A pacemaker, once implanted, only

Trudie Lobban

This is an extract from an article written by Trudie Lobban in the journal of the Association of British Healthcare Industries

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The Frustrations of Vasovagal Syncope I am a 31-year-old woman who as a child often passed out, this was put down to the fact I was a young girl growing up. At the age of 21 I began to suffer “episodes” of fainting and fitting on a regular basis, as a consequence the recovery after each episode would take longer.

As a result my GP referred me to a consultant cardiologist who undertook various tests including a tilt table test when my heart stopped; I was diagnosed with having Vasovagal Syncope, and was prescribed various drugs to see if they would help. Unfortunately I appear to be extremely sensitive to drugs and their side effects, which only added to my problem.

On 24 June 1998 as a last resort I was given a pacemaker. My consultant had hoped that this would resolve all my problems, enabling me to live a normal life. I was sensitive to being paced and my heart suffered more tachycardia (rapid heart rhythm) and palpitations. Since then my health has deteriorated, causing more blackouts, fits, chest pain and palpitations. My only option is to go to the A & E where they monitor my heart rate. Once it has calmed down, they send me home to rest and refer me to see the Pacing Clinic or my consultant. There isn’t a day that goes by when I can switch off from my health as I suffer with more and more pains in my chest as well as regular palpitations and pacing.

After attending a Pain Management Course, I discovered the charity STARS and through them discovered that some hospitals (albeit very few at present) have Blackout Clinics to help people with symptoms such as mine.

I asked to be referred to a specialist clinic, but because it was out of area the Primary Care Trust (PCT), suggested I see a consultant closer to home whom the PCT had listed as an “existing provider” with a special interest in Vasovagal Syncope. I visited the recommended consultant only to find his special interest was not in Vasovagal Syncope but Cardiac Pacing!!

Nevertheless the consultant spent 2 hours with me confirming that I had the worst form of Vasovagal Syncope.

He wrote to an expert who runs a Blackout Clinic (the one I had initially requested to visit when applying to the PCT) on my behalf to obtain his expert opinion.

The clinic have kindly offered to see me either privately or on the NHS so the only difficulty I am having is obtaining approval from the PCT. This is a great example of the frustrations I live with.

I am in full time employment although with the deterioration in my health I find working full time harder and harder. A consequence of working full time is that my social life suffers, as I tend to spend a lot of my weekend sleeping and resting for the week ahead. This is something I find very frustrating, causes me embarrassment and I become increasingly angry at my limitations.

I am a very determined person who does not want my health to get the better of me; hence I will try anything to improve my quality of life. On the outside I appear a very strong woman but inside I am very scared and continuing “episodes” of fits and blackouts are extremely frightening.

I think the work that STARS does on raising awareness is fantastic, but would like to see an improvement in health services available for people like me living daily with this condition.

Samantha Coney, West Midlands 6

Memory Loss In late 2001, age 56, I was diagnosed with a dysautonomia. Prior to this, I had “every test known to man” and of course, all results came back “normal”. A doctor in Florida made the diagnosis; he has POTS* himself so really understands.

in 2003. I have continued to improve, require less naptime during the day and have suffered only 2 seizures in the past 7 months. Over time, we have increased the dosage of Lamictal, spacing it evenly throughout the day. I still take only 150 mg/day.

Trying the prescribed medications, I still had seizure-like episodes and they occurred frequently even though I was careful to stay out of the heat and drink lots of water. My husband was frantic, especially as his job took him away three weeks out of four. We had some friends in town, but no family.

Our remaining concern is the memory loss and I have ADHD tendencies, especially when I’m overly tired. The doctor explained to us that during a seizure, there is a time when neurons in the brain do not connect and the result is “pockets” of memory loss.

Some of this is long-term loss and some is fairly current. I am adapting to this but it is still frustrating for Tom. He had hoped that my memory would improve. In some instances, it has, yet there are times when I wonder if I remember something just because he has described it to me in detail or if I am truly recalling it on my own. The doctor has told us that some memory is gone forever due to the seizure activity in the brain.

Then, in February 2003, I crashed the car while driving alone. It is a miracle I survived as I “drove” the car off road into brush.

The last I remembered was feeling an episode coming on and knowing I needed to pull to the side of the road. I do not recall stopping or getting out of the car which I did unassisted. When I “came to”, I was talking with people who witnessed the accident and who called the ambulance. I only had a few bruises!

I have also been taking other medication Florinef and Clonazepam, which has been gradually reduced, and I have come completely off Phenobarb. My doctor doesn’t know about STARS nor why the Lamictal is making such a dramatic difference in my life. All he knows is that for the time being I will continue taking it!

The next week, I saw the Doctor and he said, I think you may have syncope since you do not always completely faint and are very confused when you are “back”. The Doctor had been to a conference and had a brochure from STARS, which he gave us. I had more neurological tests in the hospital after the accident and the neurologist said her speciality was epilepsy and we could CHOOSE a medication to try. She told my husband that the next event could kill me!

Of the meds she mentioned, Lamictal was “chosen” and we started the lowest dose and within days or a week, I felt more clear-headed and frequency of seizure episodes decreased.

I would really like to communicate with someone who has syncope with memory loss. On those times when I become discouraged, it would be wonderful to share this with someone who can relate to this phenomenon. I would like to say thank you to Trudie, for caring and for always replying to my questions and Emails!

My husband requested a transfer to a cooler climate and we moved to Virginia

Eileen Cheney, USA *Postural Tachycardia Syndrome

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He’ll Grow Out Of Whatever ‘It’ is Before Wesley was diagnosed as having RAS neither of us had heard of the condition.

Wesley’s first seizure occurred when he was caught in the face by a neck chain swung around by our daughter Jasmine – then aged 4. Wesley became distressed, not able to breathe, his whole body stiffened contorted and shook, his eyes rolled up and his face turned grey and looked ‘horror struck’.

He then passed out and started breathing again before regaining consciousness a few moments later.

Wesley was then really miserable and obviously felt unwell.

The incident was very scary - at one point I thought he might die.

Afterwards we made sense of the fit as an episode of ‘breath holding’, which had happened to Jasmine a couple of times and which Eleanore, my partner had been told that she had done as a child.

After Wesley had had a number of fits, we went to the doctor and he was referred to a consultant paediatrician, who stated only that the seizures were not dangerous and that Wesley would probably “grow out of whatever ‘it’ was!” Six weeks later we ended up at hospital when Wesley had what appeared to be two huge and prolonged convulsions, followed by long periods of unconsciousness. These fits were much more extreme than previously, and we knew that something very different from the earlier episodes had taken place – it was extremely anxiety provoking. Wesley stayed in hospital overnight and was diagnosed as having RAS. A STARS leaflet was handed to us and this was the start of a process of understanding what RAS involved and what Wesley was experiencing.

We had received little in the way of support from either consultant, other than the increasingly familiar ‘reassurance’ that Wesley was ‘not in danger and would probably grow out of it’.

Life with two young children is demanding,

but RAS has added significantly to the stresses, strains and fatigue of everyday life within our household – at times we have been desperate and not coped. There have been fun times too, but over the last year its been a big challenge at times to be relaxed enough to experience these. We have tried to make the point in the STARS leaflet about not ‘wrapping up in cotton wool’ central to how we do things with Wesley. But we have gradually come to terms that sometimes we could not go to places, nor undertake the activities that we would usually have done, in case Wesley had a fit in a situation that was very difficult to manage and so, too stressful.

Wesley can have fit after fit, in situations where he is not able to recover properly by having a sleep.

This sleep recovery usually means being in a calm, quiet place, being held by one of us. When he has multiple fits it is highly distressing and one of our goals is to try to avoid this happening.

At times it has felt nerve-wrecking.

RAS arrived at a time when Jasmine was about to start school – a process that has placed considerable demands on her. She has required a lot of support, which at times has proved difficult.

Jasmine becoming distressed at the school door, not wanting to be left, and Wesley having a fit at the same time has happened several times. On occasions Jasmine’s life at home is significantly disrupted. When one of us is alone with both children and Wesley has a fit, she has to fit in completely with the demands of the situation – not easy for a 5 year old.

Jasmine is pretty accepting of Wesley’s fits and she appears relaxed about things at home, but it may be that she feels a high degree of responsibility and high anxiety, when Wesley has a fit in a situation where another adult is looking after them. It may also be that our stress and anxiety, heightened

by RAS and its impact, have contributed to her anger/distress outbursts – not at 8

leaflets and the Frequently Asked Questions (and answers) information was particularly useful because they enabled us to start understanding RAS better, including some of the background to the condition and the experiences of others. On becoming a member of STARS, it was also very useful to be able to have information about RAS sent automatically to Wesley’s doctor – a great system, and to have information to give to the organisers of the parent-toddler groups and toy library that we attend. We also contacted the help line and spoke to Trudie, which was very reassuring, but also practically very useful. Trudie gave us the name of a consultant paediatrician in London who is a specialist in RAS and who we have now seen. We have also recently begun to use the e-bulletins and the links to other sites and articles as well as to post a message asking for contact with other parents and families .

the time of Wes’s fits. Finding someone to provide child-care has not been easy. Not all child carers are equipped or willing to deal with RAS and its consequences, even when reasonably well informed. It has taken 6 months to find suitable childcare to fit in with our work arrangements and commitments, and it is starting to provide some relief. We are also just starting to support ourselves a bit more by getting better at asking other people (friends and family) to look after Wesley occasionally. Not being able to do this over the past year has felt incredibly pressured and we have experienced a very high sense of ‘over demand’ on our personal, practical and emotional resources. But we are just starting to emerge from what has sometimes felt like an unbearable and unsustainable experience, which at times has us on the edge of desperation.

Receiving the various STARS information

Tim Kent & Eleanore Hargreaves London

Surgery Tactics

THE AUTONOMIC NERVOUS SYSTEM

Not happy with your doctor’s opinion?

An idea for what to do.

Your Autonomic Nervous System (ANS) controls everything you don’t think about. Examples of this are your heart rate, your blood pressure, your body temperature and your breathing, among other things.

Doctors are only human - they cannot know everything and can have “off” days like all of us and this means they can sometimes get it wrong.

One solution, if you feel that this has happened to you, is to consult another doctor in the practice, though a better idea is to see the same doctor, remembering that a gentle, friendly approach is much more likely to end up with a satisfactory outcome. Try saying, “I know you’re very busy, however could you explain more about why you think I have...”

Remember doctors have feelings too and do you really want them to dread seeing your name on their list next time you’re in the surgery?

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A normal person can adjust to changes around them very quickly.

A person whose ANS isn’t working correctly does not respond normally.

It may take them longer to adjust or they may do just the opposite of what is expected.

This can also start a cycle of trying to re-adjust to a given situation - for example, heart rate rises then drops, then rises again.

A simple explanation is that your heart and your brain are divorced and are refusing to speak to each other!!!

That Beer Thing It wasn’t long after we were married some 35 years ago now that I had my first experience of my husband’s low pain threshold. John stuck a screwdriver in his hand, felt very shaky and I managed to get him up the very narrow stairs of our cottage onto the bed before he nearly fainted. Pale, clammy and almost not with me were what I remembered about his state at the time.

As the years passed I began to think that perhaps administering a painkiller when the symptoms threaten would be the answer and it does indeed seem to work. We have successfully used this strategy on several occasions. But perhaps the most interesting fact is that by examining each of the incidents I’ve realised that beer is a common factor. So now my husband is under strict instructions not to drink more than a pint or two at the most.

He doesn’t like this but neither does he like fainting so most of the time he’s extremely sensible!

A few years later, after we’d been out with friends and following the consumption of some rather cloudy real ale, we piled into a Chinese restaurant. The meal arrived and my beloved took just a couple of mouthfuls before suddenly falling off the chair and passing out. He vomited slightly, brightly coloured chicken tikka I seem to remember down a new jumper - a stain that never came out!

Recently he’s been diagnosed with mild angina although there is some query over this diagnosis. He hasn’t told the GP or the consultant yet about the fainting. He says he forgets about it but I cannot help thinking that there may be some connection.

In the intervening years we’ve had several more occurrences. One was when John, who was at the time trying contact lenses, prodded and poked his eye for so long that he passed out. We spent a few hours in A&E where staff could find absolutely nothing wrong with him and pronounced him extremely fit. We’ve ended up in A&E more than once and they’ve never been able to find any specific reason for the faint.

The most recent occurrence of fainting was when John was on a walking holiday with a friend. During the trip they met some Australians and went with them to the local pub. The rounds were bought and the dreaded third pint of beer appeared without my husband having the opportunity to refuse it. He thought it would be rude not to drink it and, as he said later because he hadn’t fainted for so long he’d more or less “forgotten about the beer thing.”

I think there have only been about a dozen incidents in the entire 35 years - usually involving John waking in the early hours, 3 am seems a favourite time, with mild stomach discomfort. A visit to the toilet, which he usually finds necessary for bowel relief, can result in a faint in the bathroom. Once when I’d remained asleep he fell against the side of the bath and caused quite a lot of superficial damage to his face. Imagine telling your work colleagues when they enquired about the injury: “I fell off the toilet!”

Later one of the Australians, a cardiac medical practitioner as it happened, looked at him and said suddenly “Are you all right?

You’ve got a heart condition, I can tell and I think you’re not well.” She was right of course and he was feeling shaky but luckily he was lowered to the floor in time to stop a full faint.

The incident wasn’t as bad as it could have been but it did confirm “that beer thing”.

Margaret 10

1st Annual UK Heart Rhythm Congress STARS ANNUAL Birmingham, United KingdomCONFERENCE 2006 SeptemberThursday 19th to 21st 2006 21st September 2006

STARS has the opportunity to hold its Annual Conference at the UK Heart Rhythm Congress 2006 at the National Motorcycle Museum, Birmingham on Thursday 21st September 2006

UK Heart Rhythm Congress 2006: There will be presentations from medical

and patient experts plus the opportunity to meet fellow sufferers, carers and families. If you have any suggestions for the agenda please let us know and all will be considered.

First Announcement

We hope you will support this event.

Registration is now available at www.ukheartrhythm.org.uk.

You can register on line or print off the registration form, complete and return with your payment of £30pp.

This fee includes; Access to all congress lectures and presentations (except “professional sessions”) Access to the congress exhibition Coffee, tea and lunch Patient and information pack Promoting better understanding, diagnosis, treatment quality of life for individuals with cardiac arrhythmia

Places for Thursday will be limited so you are strongly advised to book as early as possible - The last STARS Conference was a sell out.

Look forward to seeing you there.

If preferred, you can write requesting a Registration Form to: STARS PO Box 175, Stratford upon Avon, Warwickshire. CV37 8YD 11

It’s RAS! As a toddler whilst having my bedtime bath, with my favourite toy, a walrus named Wolfgang, I sat down directly on top of Wolfgang, and this sudden shock of pain caused my first attack.

Time went on and I had more attacks. The one I remember most being when I fell over at playgroup.

While receiving medical attention I had another attack.

My parents were literally going spare, until my mum noticed an article about another child with the same problems.

Eventually, I was diagnosed with RAS. This was no huge surprise as my grandfather suffers from a similar thing.

It’s been life changing for me. I had to wear a medic alert bracelet, in case I had an attack away from people who knew about my condition.

As I’ve got older I have learnt to live with RAS, but when I was younger it seemed like such a burden. I wasn’t allowed to go to the park by myself, and I hated all the questions about why I had to wear ‘that bracelet’.

When I was about 7 or 8 I appeared on the local news, in a story about my condition.

As the camera man set up in my room, and filmed me reading a story book my annoyance at my condition blew out the window because I was so excited about being on television. My mum did all the important stuff, like being interviewed about dealing with the whole thing etc, until it was my turn. I talked to the reporter about how I wasn’t allowed to go to the park on my own, and she asked me

about my hobbies. When it was shown on the television we taped it and took it to school, where my whole class watched it. This sparked

doctors were referring to me as “the girl with the thing” more questions, but I suppose as a child I was glad of the attention. Aren’t we all?

When I was about 10, the family moved to England, where I started a new school. Of course I got more questions about my condition, but didn’t mind so much as I was a bit older and knew how to handle them better. I just told people I had a ‘heart problem’, which seemed to work. It seems silly now, but to me the biggest problem I faced was the worry of having an attack in front of people, the sheer embarrassment of passing out and maybe fitting 12

in front of my friends horrified me. Secondary school was daunting, as PE brought up a problem I wasn’t expecting.

No jewellery is allowed during sports, but I couldn’t take mine off. I had to wear a sweat band over it. More questions.

Later on, my head teacher asked me to write an article about living with my condition for the school newsletter.

I accepted the offer, but worried what everyone would say. It turned out I was in the clear as none of my peers ever read the newsletters, but then my head teacher asked me to read out my article at a school assembly. No way! I have enough trouble reading aloud to a crowd, without it being about my personal life! Then, my next dilemma.

One of my friends was having a birthday party at laser zone, and of course I wasn’t allowed to go in case the strobe lights caused me to have an attack. I have now found out, that strobe lighting has no effect on me.

Since growing older, my attacks have become less frequent, the last one was mid 2001, when my GP stuck a needle into my septic toe. To my amazement, I didn’t pass out with the shock or pain.

In reception making a follow up appointment, I felt dizzy, and the next thing I knew I was waking up on the surgery floor. I was sick. having fallen from standing and had hit my head quite hard.

At home, I thought I was fine, but I wasn’t. I had repeated dizzy spells and blackouts, so my mum called an ambulance. The doctor

said I had concussion, but was puzzled as to why I had blacked out in the first place. My mum explained my condition to him, but he hadn’t even heard of RAS, none of the staff at the hospital had. I was put through tests, MRI scans, wires fixed to my head etc. I was very annoyed at this, as I was feeling awful from the concussion, the last thing I needed was to be put through more stress.

To make things worse, the doctors were referring to me as “the girl with the thing”. I wanted to scream ”IT’S RAS!”. When they finally came round to the idea that I didn’t have epilepsy or anything like that, I was allowed to go home. I had spent weeks in hospital, not eating right because of the

concussion, so I had to endure more weeks of stomach problems and all sorts, all because they thought I had epilepsy.

I am now 17 and looking back I can’t imagine my life without RAS. I attended the prom at the end of secondary school; I was allowed to remove my bracelet to make way for my fancy jewellery. I haven’t worn it since. My last attack was 4 years ago, and I now know how to handle myself better when faced with shock or pain, telling myself I’m not going to have an attack in my head etc. to be honest, I think I have grown out of it (fingers crossed).

Since accepting my condition, I have done more to raise the awareness of others. I was invited recently

to the House of Commons for the launch of National Arrhythmia Awareness Week.

I was hoping to meet Sir Roger Moore, who also suffers from the condition, but sadly it was not to be, my only consolation was a fancy name badge and posh finger food.

Although saying that I did get a front page spread in my local newspaper about my trip to London, which was the first time I haven’t been ashamed about my condition.

I am now an official volunteer for STARS and I attend the annual meetings too. I hope to be raising awareness and hope for sufferers for man years to come.

Sarah McClay Aged 17, Cumbria

Neurocardiogenic Syncope I was diagnosed in 1995 at the tender age of 43 with Neurocardiogenic Syncope (NCS) at the cardiovascular investigation unit at the RVI in Newcastle. I was lucky from first faint to diagnosis took about 2-3 weeks, and then another 3 weeks before the pacemaker was implanted. I managed to work for 4 years afterwards but in the end it was suggested I stopped. Now I am down to about 3-4 ‘faints’ a week instead of 3-4 faints a day in 1995!

Some of the reduction in fainting was by learning what triggers a faint - when I laugh/cry/cough/ hiccup. I usually faint without warning, other times I have the dreaded pre-syncope for 5-10 minutes. This means recording some of my favourite comedy shows just in case! Stopping work also made a big difference as my job was quite stressful. One important factor is there is life after diagnosis. As long as you are aware of your triggers and can avoid them or mitigate them.

In the North East people were aware of NCS, however when we moved to rural Lincolnshire no one had heard of NCS, although some people had heard of ‘drop’ attacks. The local village church has a coffee morning every month where all the proceeds are donated to a charity. I asked them if they would promote STARS and they kindly agreed, so last month’s coffee morning was in aid of STARS. I had to give a 5 minute talk explaining what NCS was, and show my old pacemaker, £192.00 was raised - a big thanks to all the kind people of Saxilby.

David Warner, Lincolnshire

NCS 13

Dear Trudie…….

This is a new feature for STARS. It is a chance for you to have your say. You may have had a funny experience or an annoying experience that you want to get off your chest. What ever you feel you need to write to the letters page about please try and keep it short. This page will not replace the individual stories so keep them coming as well.

Is there anybody out there?

Thank you STARS I know you probably get this all the time... but I’m 13 and I’ve been ‘fainting’ every day for about 8 months now. I know this isn’t very long but it seems like a lifetime.

My doctors have been doing all kinds of tests for a while and I’ve just received a date for my 24 hr ECG (finally!). My paediatrician gave me a STARS leaflet so I had a look at the website.

We have two children Jasmine who is 5 and Wesley who is 17 months. Wesley has RAS. We would like to talk to (and meet if possible) with other parents and families who have a child with RAS. Wesley had his first seizure nearly a year ago, and rarely does a day go past without him having one, he is frequently having several in one day.

He also has multiple fits on occasions.

We are all struggling with the impact of Wesley’s RAS and we really need some help and support to enable us to deal with all aspects of it. We feel it would help us to understand more if we could hear other people’s stories and share our own experiences by talking with other parents and families living with RAS. To us as a family this would be a very valuable part of this huge learning process.

Any contact would be much appreciated, so please get in touch through STARS

Reading your site made me so happy to know that it happens to other people and that I’m not as weird as I first thought. I just had to write and tell you how grateful I am. Thank you sooooooooooooo much for giving me a whole new outlook on my ‘condition’ I can’t thank you enough.

Trudie Replies.....

We’re glad that STARS can be of help.

No one should feel that they are the odd one out particularly when they have a medical condition. We trust your story will give hope to others.

Eleanor Hargreaves, London

It’s Only a Faint The strangest feelings come over me Distant, distant are those around My body is weak, my head like lead I’m falling, falling losing ground.

I hear you speak, your worried cry I am not dead, still with life Now I see your ashen face My journey causing so much strife

Dark and silent so alone That empty space is calling me I must return, get on my feet Why oh Why does this have to be?

Another medic has their say Not to worry, it’s only a faint Familiar words, so often said My reply “Just a faint, just it aint” 14

Not the Only One With Syncope I am the youngest of six children, none of whom has syncope. My first attacks happened both at school and at air training corps camps.

At first it was thought that I was having a bad asthma attack or an epileptic fit. I was taken to my local hospital where I recovered and was sent home. My mum then took me to my family doctor. I was told at first that it was just teenage hormones and nothing to worry about. At this time my school refused to have me in the school as I was at risk of falling down the many flights of stairs.

doctors in the A&E departments assumed that I had epilepsy until told otherwise by friends or family. It was also thought that it was diabetes because of my feeling of hunger afterwards [always for sugary products]. It was then finally decided by my cardiologist that I had Vasovagal syncope. My life has totally changed, as I have now always got the fear that if I go anywhere on my own something will happen and no one will be there to help me, or that the next time I have an attack it will be at the top of a flight of stairs or in the middle of the road. My family have also got the worry of my going out on my own and having an attack.

The doctor found the tests inconclusive and decided to send me to a paediatrician for more specialist tests. I was given a twenty-four hour heart monitor to record any attacks that occurred. Unfortunately no attack happened. I was then sent back for a

I was absent from school for two months second twenty-four hour monitor, on the second recording it was found that my heart raced at up to 175 bpm during normal everyday activities. There were also signs of ectopic beats.

My mum then found the STARS website through an article in The Daily Mail newspaper.

We received lots of information and I felt at ease that I wasn’t the only one with syncope.

The attacks carried on happening and became more regular and my mum started to worry and doubt the doctor’s decision.

She then made another appointment with a different doctor. The doctor then decided to take a series of blood tests. I was then sent to cardiology because of my unusually fast heart rate. That was when I was first sent to a consultant cardiologist, who performed a tilt table test, during which I had an attack.

My heart rate had dropped dramatically. I felt dizzy and warm and people seemed far away.

Finding this information has also made life easier and put my friends and family at ease knowing that finally they all know what to do.

I only now need medical assistance when my asthma has been triggered. My condition is also complicated by the fact that I am allergic to Atropine, one of the preventatives when under anaesthesia. I am glad I have a diagnosis and that the doctors still think that I might grow out of it in the future.

In the last year or so I have been experiencing seizures from which ambulance crews and

Jenny Mackay, Lanarkshire. Age 16.

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VOLUNTEERS DESCEND ON STARS OFFICE STARS hosted its 4th Volunteer Training Day on Saturday 12th November 2005. The event was well attended with about 20 volunteers who had travelled from far and wide, each one of them ready to get involved and full of positive enthusiasm. The usual warm welcome from the STARS team was received.

The morning session of the day focussed every one on developing the use of the volunteer, whilst continuing to ensure that both the needs of STARS and the needs of the volunteer are met. This was summarised well with a variety of volunteer vacancies being identified, for which every one could apply. A hearty lunch of sandwiches and crisps was provided before entering into the afternoon session. This concentrated on the STARS 5 year plan. It took the shape of a recognised Strategic Plan used by most companies, businesses and charities. It contained 5 main components:

A Vision for 2020.

A Mission Statement Challenging Goals for 2010 Specific Objectives for 2006 Core Values

The document is now in the process of being finalised.

Arrhythmia Awareness Week 2006 is the perfect opportunity for volunteers to pull together and be heard. More information about this will follow. If anyone is interested in the current volunteer vacancies or would like more information about becoming a volunteer for STARS, please contact trudie@stars.org.uk or telephone the free phone number 0800 028 6362. You will really make a difference.

Sarah Boxall

Fundraising Fundraising thanks to..

P A Aston, P Bennett, M Bentley, J Budden, Burydale Junior School, C Conroy, P Fairweather, J Fear, NatWest Charities, A Pettengell, M Pilkington, C Reid, Solihull Indoor Bowls Club, J Strevens, J Thom, M Tirraoro, A Trowman, S Walters, D Warner.

Owning your own Defibrillator Did you know it is now possible to have your own automatic defibrillator at home? The technology behind automatic external defibrillators has now developed to the point where private individuals can safely and easily use a defibrillator to help save the life of some one suffering from sudden cardiac arrest (SCA). A home defibrillator will talk you through the whole resuscitation process and will not deliver a shock unless the machine confirms the patient is suffering from SCA. Home defibillators are about the same size and weight as a hardback book.

What a fab girlie night a group of us had at a Virgin Vie party in Northern Ireland. It was hosted by my sister, Michelle, in aid of STARS. There was a raffle where my hairdresser, who is the Northern Ireland Hairdresser of the Year for the third time, donated a voucher for a cut and blow dry - everyone was desperate to win this! It was very exciting and the winner was extremely pleased!! There was also the usual wine and chocs to be won.

The raffle made £125 and sales came to over £700, making a commission of £110 for STARS. The final total raised was £527, due to a very generous donation. This was more than I ever expected considering there were only ten of us. It certainly raised awareness and I am holding my own party for STARS in February.

Above is a picture of the two winners, Diane Conlon who won the Shane Bennet voucher and Sonya Comisky, winner of the Virgin Vie jewellery.

Cathrine Reid, Northern Ireland

£ 2 B N O F S A N TA’ S P R E S E N T S D U M P E D !

It was reported in the Daily Express that up to one in seven Christmas presents will be thrown out, resold or given to charity in a £2billion clear out after the decorations come down.

If you have Christmas Presents that are unwanted, why not donate them to STARS so we can raise much need funds through raffles and other activities 16

NEW COMPUTERISED CARE RECORDS SERVICE Two of the STARS volunteers recently attended a meeting in London about the new computerised Care Records Service. The main points from the meeting were; All medical records are going to be on the data base Medical Staff will be able to access this anywhere in the country where you present yourself Only those involved in your care will be able to access your notes You will be able to keep parts of your record confidential if you so wish NHS staff can only access the sections of your record relevant to their position All NHS staff will get training, smart cards & passwords, before they can use the system Everybody who uses the record will be monitored closely, any abuse will be dealt with seriously You will be able to see who has been accessing your record You will be able to see your record either free or at a minimum charge The new system will start to roll out from March of next year, a huge training programme is already under way to NHS staff.

More info about this system can be found at www.connectingforhealth.nhs.uk Another site worth visiting is www.nhs.uk/healthspace this aims to link with the computerised records system thus letting you keep an up to date personal health organiser.

The new system has a lot of good points, as well as the worrying bad points, but whichever way you look at it this should help sufferers if they suddenly arrive in an A&E dept anywhere in the country.

Andrew Fear

New Year Raffle Did You Know?...

Know ?...

Enter the STARS New Year Raffle for a chance to win goodies to lift your winter spirits and banish the post-Christmas blues.

The tickets are included with the newsletter, with the exciting list of prizes printed on each one.

Send the stubs and your cheque/postal order with the sum raised, to the usual address.

Even when you are at rest, your heart pumps more than 2000 gallons of blood in 24 hours? And, if all your blood vessels were laid out end to end, they would stretch an estimated 60,000 miles.

Please REMEMBER your SUBS are due

NOW!!

NOW Your subs enable STARS to offer support and help families like you 17

JUST A SHADOW OF MERLIN Shadow was having one seizure after another, about every two hours and, unbeknown to me, he had a stomach bug, which did not present itself for 36 hours after the seizures began.

This, of course, causes dehydration, and lowered his blood pressure. I had to call the vet in the middle of the night, and she asked what I thought was causing it. I said I thought it was a sudden drop in blood pressure and asked that she give Shadow atropine.

What a roller-coaster ride we have had this year following our article about Shadow in last January’s newsletter.

Firstly, Merlin, our other Shih Tzu, who is 6 years old and gold and white, began having seizures last November after being frightened by fireworks.

Both dogs have common ancestors, which reinforces the genetic link of RAS (eg Merlin’s father is Shadow’s grandfather).

The vet said Shadow’s heart rate was very low, which would confirm he had low BP and said she thought the dose of digitalis he was taking was too high.

At the beginning of this year one vet at the practice refused to listen to our belief that both dogs have RAS and scathingly said it was epilepsy and if the seizures continued, Shadow would have to take epilepsy medication, which made us lose faith in his judgement.

She recommended halving it as digitalis lowers the heart rate, and hence the BP, and could account for Shadow’s seizures.

She gave Shadow an injection of atropine, followed by another several hours later, with the result being that the seizures were less intense, with longer periods between them and then ceasing altogether. So this confirms that Shadow and Merlin DO have RAS, and the veterinary world now has to accept the condition does exist in animals.

Following this, I did extensive research into both conditions, and was appalled at the side effects the epilepsy drugs were having on animals (no longer used on humans for precisely that reason). This made me even more determined to bring about a change. We obtained an article, written by a vet, who said that, “despite widespread strong impressions” that a sudden drop in blood pressure resulting in syncope may occur in dogs, “convincing documented evidence is still lacking.” He also said the “table-tilt tests (commonly used in the investigation of syncope in humans) are not very practical for use in veterinary species”, and “assessment of blood pressure in the collapsing dog should be conducted as a matter of routine.”

Since cutting down the dose of digitalis, Shadow is running around behaving like a puppy, full of mischief. Everyone thought he would not make it when we had to attend the vet’s surgery for his second injection of atropine.

The vets have now provided us with some atropine tablets in case of emergency, and I intend to provide them with full details about RAS to help others.

The work continues…

I wrote to the author of the article, at the Royal Veterinary College, but have yet to receive a reply. I was about to follow up my letters when events overtook us last weekend.

Chris Poyner, Dorset

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✁

Publications Order Form

STARS leaflets, please fills in the form below. Post it to STARS PO Box 175, Stratford Upon Avon, Warwickshire, CV37 8YD. We can also email them to you (include your email address) or you can order via the website

NEW! STARS E-mail Updates

Your name:

If we have your email address, you will have already received our monthly e-mail updates. These bring you timely information on developments and news about Syncope, RAS and blackouts, as well as news about STARS. If you haven’t received one and would like to, email trudie@stars.org.uk and you will be added to the mailing list.

These updates are a cost-efficient way for us to keep you informed, and they also include links that we think you may find interesting.

Rest assured we NEVER share or sell your email address with anyone else.

If you cannot download the html content of the email, there is a link to a website on the STARS site where the email can be viewed online.

Email Address: Syncope Leaflet RAS Leaflet Vasovagal Syncope Leaflet STARS Medical Survey Information for Toddler Group and Nursery Schools Caring for a person with syncopes/RAS Information for teachers Starting your New School Helpful Tips Night terrors Frequently Asked Questions Newsletter back copies (50p each) Choosing Alternative Treatments Medic Alert Application form Information for Anaesthetists and Dentists Atropine Treatment and Confusion of Terms

Volunteer Career Opportunities at STARS

Functions of the Vagus Nerve VIDEOS : One week hire costs £5 hire + £10 separate cheque as refundable deposit per video. Non-subscribers should also include a £10 minimum donation Natural attacks, ocular compression, TV interviews

If you have the time and expertise and would like to help STARS in a voluntary capacity, the following positions are available:

RAS Support Group ‘My pacemaker & me’ BOOKS Please send me Fainting Phenomenon by Blair Grubb @ £7.50 subscribers / £10 Non-subscribers (state number of copies)

Volunteer Regional Volunteer Co-ordinator

Please make cheque / postal orders payable to STARS & enclose a self-addressed A4 envelope with 4 loose postage stamps. You can also pay by paypal by clicking on the paypal donate box on the subs page. Thank you.

Volunteer E-Bulletin Editor Volunteer Telephone Support

Delivery Address:

For further information and a job description, please contact: trudie@stars.org.uk

Post Code:

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SUBSCRIPTIONS AND DONATIONS Your subscriptions are what keep STARS up and running. Please renew your subscription to STARS for 2006. Subscriptions are a minimum of £15/$25/€25 a year. Without your subscriptions STARS could not provide the vital services that help thousands of people in need of support and advice.

It is so important that you remember to renew your subscription this January. Thank you.

Name: Email: Address & Post/Zip Code Telephone: I would like to make a donation to STARS and enclose:

£/$/€

OR I have made a donation to STARS via PAYPAL at www.stars.org.uk to the sum of:

£/$/€

OR I have made a donation to STARS via my CAF account to the sum of:

£/$/€

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 to STARS of: (min £2 ). (see form below)

£/$/€

I have arranged an annual standing order to STARS of (min £15). (form below)

£/$/€

STANDING ORDER AUTHORITY My Bank

GIFT AID DECLARATION

Bank Address:

Name of taxpayer: Address:

Please Pay: Postcode:

STARS, Account: 02423406, Sort Code: 30-98-26 Lloyds TSB Plc, 22 Bridge Street, Stratford-Upon-Avon, CV37 6AG The sum of: £/€/$ On (First Date) And after this, every

/

Please fill in Gift Aid Declaration to allow STARS to claim an extra 28p for every £1 you donate, at no cost to you.

I want STARS to treat all donations I have made since 6 April 2000, and all donations I make from the date of this declaration until I notify you otherwise, as Gift Aid donations.

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 in the tax year (currently 28p for each £). I may cancel this declaration at any time by notifying STARS. I will notify STARS if I change my name or address. Please note full details of Gift Aid tax relief are available from your local tax office in leaflet IR 65. If you pay tax at the higher rate you can claim further tax relief in your Self-Assessment tax return.

/2006

Month / Year ( delete)

My Account No: My Sort Code My Signature

Return to STARS, PO Box 175, Stratford Upon Avon, Warwickshire, CV37 8YD

Date Please print and fill out this form and hand to your bank or building society. Thank you

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