The uts o k c Bla rust T FEBRUARY 2010 : ISSUE 32 WORKING TOGETHER WITH INDIVIDUALS, FAMILIES AND MEDICAL PROFESSIONALS TO OFFER SUPPORT AND INFORMATION ON SYNCOPE AND REFLEX ANOXIC SEIZURES
OUR FOUNDER & CHIEF EXECUTIVE’S NEW YEAR LETTER Trudie Lobban MBE
Happy New New Year welcome to Happy Year everyone everyoneand and welcome to our new members who are receiving this newsletter for the first time. I hope you will find it helpful and informative. Because of the internet, and because the STARS website can answer many of your concerns, I know we have lots of members who never contact us. Do not forget, we are still here to offer support during those periods of despair which we all experience at some point in our lives – you are never alone and remember, 50% of adults in the UK will faint at sometime during their lifetime!
interviews with sufferers of RAS, syncope and POTS and presentations on the management of these conditions, specifically for schools. Again, I have our fundraisers and volunteers to thank for our being able to produce this. The idea was born two years ago but it is only this year that we have had sufficient funds to complete the project. And, finally, I am very excited to tell you that Dr Blair Grubb, the acknowledged world expert on POTS and fainting, has accepted our invitation to visit the UK and speak at Patients Day on Sunday 3 October 2010. This is a huge honour. It is fantastic news for our POTS sufferers because there are few experts on this condition and consequently impossibly long waiting lists for a consultation. Register early to secure a place!!
Financially, 2009 was not a good year for any of us, with the so-called credit crunch biting hard! However, I have been overwhelmed by the generous donations that we have received and it is totally due to you, our fundraisers, that STARS now has a new updated website, www.stars.org.uk launched at STARS Patients Day in October featuring new information on Syncope, RAS and POTS and a database of UK and International syncope specialists. SaFE (Syncope and Falls in the Elderly) is equally catered for and Pippa, STARS Project Officer, has great ideas for this year to ensure care home residents who have falls are diagnosed correctly. Thank you everybody.
STARS took another big step forward in 2009 and I hope this will be reflected as we promote greater awareness of these debilitating conditions through the website, the DVD and the enclosed new Blackouts Checklist, which has been written specifically to help patients and their doctor reach the correct diagnosis for unexplained loss of consciousness. We also anticipate that 2010 will be a year when the medical profession will appreciate that POTS is a very real illness that can cause havoc in the lives of young and old alike.
The long awaited STARS DVD for teachers, carers and parents is imminent. There are face to face
I look forward to meeting many of you throughout the year at our regional meetings and Patients’ Day.
Patrons: Prof. John STEPHENSON, Dr William WHITEHOUSE, Prof. Christopher MATHIAS, Prof. Rose Anne KENNY, Dr Adam FITZPATRICK, Dr Wouter WIELING, Sir Roger MOORE, TWIGGY Lawson, John BURTON RACE, Sir Elton JOHN www.stars.org.uk
Registered Charity No: 1084898
info@stars.org.uk
Patients’ Day 2009 A
fter months of preparation Patients Day was finally here! I had heard so much about it, but had yet to experience it.
to a consultant’, had both doctors battling for their corner with it concluding that in order to rule out anything life threatening it is deemed to be in the patients best interest to see a cardiologist first.
Having recently joined STARS, assisting Jenni on the helpline, I was eager to meet some of the people I had spoken to and also to listen to the presentations by the UK’s leading experts.
The next presentation offered a ray of light to POTS and Syncope patients in the form of using Cognitive Behavioural Therapy to help to control the condition. CBT is believed to assist sufferers in managing their symptoms by teaching them to understand the psychological factors behind what they are feeling and then teach them ways of overcoming these feelings and so reducing the number of episodes. Since Patients day, we have been made aware of a national initiative called IAPT (Improving Access to Psychological Therapy) through which patients may be able to access CBT. This initiative is still relatively new and so may not yet be in place in every Primary Care Trust, however your GP will be able to clarify if it is available in your area. For more information please visit www.iapt.nhs.uk.
The day started in a very civilised manner with tea and biscuits served to all patients, allowing people to chat to each other and perhaps meet up for the first time. I noticed after joining the Message Board of one of our sister charities that a lot of patients had chosen to wear pink carnations and so would be easily spotted by fellow message boarders! Perhaps something to think about for STARS members next year!
“The speakers were great; they relayed their presentations in an informal and very patient friendly manner”
I thoroughly enjoyed the day and what I found most rewarding as a member of the STARS team was that although the doctors’ presentations were interesting and extremely informative, it was the patients that made the day. It was wonderful to see people talking to each other, realising they are not alone and that not only do they have each other, they have us here at STARS! We have already started planning next years Patients Day and hope to see many of you back again and, for those of you who missed this year, please put 3rd October 2010 in your diary!!
The speakers were great; they relayed their presentations in an informal and very patient friendly manner, enabling me especially to understand the condition in a much more detailed way. Many patients were taking notes and the atmosphere was very relaxed with lots of questions at the end of each session.
If you would like to view the presentations given on the day, they are available on the website, www.stars.org.uk. Caroline Holmes Helpline Administrator
In particular, Rose Anne Kenny’s presentation, ‘Syncope in the Elderly’, was particularly well received as so often the reason an older person faints is often masked by something else. From Left to Right: Prof Rose Anne Kenny on Syncope in the Elderly, Our “STARS”, Caroline Holmes and Jenni Cozon & Dr William Whitehouse on Syncope in the Young
Following lunch, a spirited debate between Dr William Whitehouse and Dr Joseph de Giovanni certainly put some sparks in the air. The subject, ‘Should a patient be referred to a loss of consciousness clinic before referral
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My experience of a falls detector About four months ago, for peace of mind from regular fainting episodes, I was issued with a falls detector. From my recent experience, I would recommend a falls detector to any STARS member, especially those living on their own or spending part of their day by themselves if they suffer from syncope.
I was originally told I was not eligible for a falls detector because of the cost. Following this, I said I would pay for it myself, but whilst waiting for the falls detector I was visited by a community nurse. During her visit she witnessed me having a faint, so she contacted my GP unknown to me. I then received a phone call to say a falls detector would be fitted free of charge within the week, and sure enough that is what happened.
A falls detector is greatly superior to pendant call alarms as it is self activating. As soon as you hit the ground, if you are not upright after 15 seconds it will sound an alarm. Following this, if you don’t get up after another 15 seconds it will trigger an alarm which is received in the call centre. A voice will then appear over the speaker asking if you are alright or if you need assistance. In the worst case scenario, and you are unconscious, the call centre can contact your neighbours or the emergency services to provide you with assistance.
Please, if anyone is experiencing regular fainting episodes and you are offered a falls detector, do accept. If you are interested in receiving a falls detector, don’t hesitate to ring your community care team to ask for one, in the end it could save your life. Good luck with getting one fitted. Jane Bateson Scotland
The device is quite small, about the size of a box of matches, which simply clips onto your belt or waist band so you are hardly aware of it. The speaker is connected to your phone line, and has a 50 metre radius. Therefore, even if you are in the garden, help will still be on hand if anything should go amiss.
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Jane’s experience of falls caused by syncope is true for many older adults. In fact, syncope and falls are together the most common reasons for older patients to present at accident and emergency. Falls caused by syncope if left untreated and unmanaged can have serious consequences in older adults, potentially leading to serious injury, loss of confidence and reduction in independence. STARS’ Syncope and Falls in the Elderly Project, promoting accurate treatment, diagnosis and care of older people with syncope, has recently launched new information for older adults with syncope.
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CV37 8Yckshire Comm 01789 D UK on Cau safe@sta 450 564 ses an www.s rs.org.uk tars.org.u Syncop d Preventa k tiv e in Old SYNCOP er Peop e Advice on that is E is the me le supply caused by dical term
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To request your copy of the Common Causes and Preventative Measures on Syncope in Older People information sheet, please email safe@stars.org.uk, or phone 01789 451 833.
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Congratulations, Julie…
Julie Fear, one of STARS longest serving volunteers, found herself in the spotlight last year when she was awarded the Charles Lobban Volunteer Award for Outstanding Contribution to Arrhythmia Services 2009. Julie has always shown exceptional commitment to STARS from stuffing newsletters in envelopes to travelling to Europe to highlight the story of her misdiagnosis and subsequent happy ending to heads of industry and medical professionals. The committee, comprising of leading UK medical professionals from different fields, was unanimous in their vote.
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Dr Mike Gammage and Jayne Mudd presenting Julie with her award
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FACE TO FACE…
Q&A
…with Professor Christopher Mathias and his team Andrew Owens (Clinical Research Co-ordinator) and Frances Wharton (Clinical PA) from St Mary’s Hospital, Paddington
Q
What causes PoTS? The Postural Tachycardia Syndrome (PoTS) is a manifestation of autonomic dysfunction with many causes and associations. It is defined as an increase in heart rate of over 30 beats per minute when standing upright or with head up tilt, and symptoms include palpitations, light-headedness and fainting, all mainly associated with the upright position. However, in many cases, even modest physical exertion can bring about these symptoms. Due to the autonomic nature of the condition and the close association with other disorders, it is ideal for the individual to be evaluated in a centre known for its autonomic expertise and for its experience in this condition. This is of particular relevance to treatment which should be directed towards the autonomic dysfunction and also the associated disorder, if present. This is based on clinical evaluation and then on autonomic and appropriate allied investigation, aimed at diagnosis and understanding the mechanisms so that treatment strategies can be individually structured.
Q
What medication is available for PoTS patients. Midodrine has been around for some years. Is there anything new on the market?
blockers and a newer agent, Ivabradine. The use and combination of drugs need to be related to the individual patients’ needs, responses and associated factors.
Q
I suffered a severe viral infection some months ago and now I have PoTS. Are the two connected? There is anecdotal clinical evidence, which needs to be formally investigated, that in a number of PoTS patients, a viral or ‘flu’-like illness may precede the onset of PoTS.
Q
Does PoTS ever go away? Studies suggest that patients eventually suffer fewer symptoms as a number of contributing factors recede. These may include exams and university life, which in a young adult may cause stress and anxiety.
Q
Is PoTS a condition of our times? So few doctors and consultants are aware of the disorder
There are a number of drugs that can be used, ranging from Fludrocortisone, Midodrine and Octreotide to beta
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There are many reasons for this lack of awareness. The fact that this syndrome crosses a number of specialties, and
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that many centres providing tilt table testing (as opposed to autonomic testing) are linked to established specialties, such as Care of the Elderly and Cardiology, focused on evaluating specific disorders such as syncope. This syndrome is dependent on clinicians having broader autonomic and allied experience and emphasises the need for evaluation in centres with such experience.
Q
Is it a fact that more often PoTS seems to strike young adults from around 15 years to late twenties? Yes, currently many patients with PoTS are between 15 and 50 years of age, but it can occur at any age. PoTS is about five times more common in women than men.
Q
Are there other conditions that are associated with PoTS Ehlers Danlos III Syndrome (Joint Hypermobility Syndrome) has a strong association with PoTS, which is our experience at St Mary’s Hospital and National Hospital, Queen Square Autonomic Centres. Many patients have, sometimes erroneously, been given a diagnosis of Chronic Fatigue Syndrome/ME, an anxiety disorder or a panic disorder.
Q
Would CBT help my daughter? She faints nearly 20 times a day and the doctor says he cannot help anymore? Cognitive Behavioural Therapy (CBT) may help some, but is not a first-line approach and depends upon the circumstances, results of the autonomic investigations and the patient’s response to non-drug and drug therapy. It can be beneficial in some cases, but usually further down the care pathway.
Q
Can PoTS be passed down in families? This depends upon the associated causes and conditions. PoTS with a familial or hereditary component is associated with the Joint Hypermobility Syndrome, for example.
STARS PO Box 175 Stratford-upon-Avon Warwickshire CV37 8YD UK 01789 450 564 info@stars.org.uk www.stars.org.uk
Postural Tachycardia Syndrome (POTS) What is POTS?
Symptoms in some are worse before a menstrual period.
Diagnosis is ideally made in an autonomic centre, where tilt table (see STARS Tilt Table Information sheet) with relevant autonomic testing (often with exercise testing and sometime food which can worsen symptoms) confirms the disorder and importantly excludes other causes. Symptoms The main symptoms of POTS include: • • • • • • • • •
Increased heart rate (tachycardia) Chronic dizziness Light headedness Insomnia Palpitations Blurred vision Weakness Pooling or discolouration of the ankles or feet Chest pain
Potentially related symptoms: • • • • • • •
Loss of concentration Migrainous headache Fatigue Shortness of breath Coldness of legs and fingers Body temperature regulation issues Hyperventilation or very fast breathing that can result in loss of blood pressure and fainting What causes POTS?
There are a number of factors and disorders causing or associated with POTS, hence the need to be evaluated by a centre with such experience. Ehlers Danlos iii Syndrome (a hypermobility joint syndrome) is sometimes associated with POTS. Depending on the results following investigation, treatment strategies can include self help measures as well a range of drugs. What help is there? Self help: • Elastic support stockings • Hydration (2 litres orally per day). The patient should have at least one glass or cup of fluids at meal time and at least two
at other times each day to obtain 2 – 2.5 litres per day • Increasing salt intake (10 -20g of salt)
Patient Information - Postural Tachycardia Syndrome (POTS)
Q
A copy of the STARS PoTS information sheet is downloadable from the website, www.stars.org.uk or to request a paper copy please email jenni@stars.org.uk.
Are my symptoms likely to be worse just before my monthly period?
Postural Tachycardia Syndrome (POTS) manifestation of autonomic dysfunction is a and is defined as an increase in heart rate of over 30 beats per minute when standing upright but without a postural fall in blood pressure; this often is made worse by even modest physical exertion. It is a relatively new disorder, which is slowly being recognised by the medical profession. It is often underappreciated by physicians, which can impact on the patient’s quality of life through misdiagnosis or being informed symptoms are “all in their head”. Historically, many patients with POTS were given a diagnosis of Chronic Fatigue Syndrome/ME, anxiety or panic disorder.
Medication: Some specialists do prescribe medication and Midodrine is well known as a drug that can help sufferers lead a more normal life.
For further information contact STARS The Heart Rhythm Charity
Affiliated to Arrhythmia Alliance www.heartrhythmcharity.org.uk
Founder and Chief Executive: Trudie Lobban Trustees: Susan Broatch Andrew Fear Rose Anne Kenny Cathrine Reid William Whitehouse Registered Charity No. 1084898 ©2009 Printed October 2009
endorsed by endorsed
by
Neurovascular and Autonomic Medicine Unit Professor Mathias is the Director of the Neurovascular and Autonomic Medicine Unit. This clinic is the National Referral Centre for a variety of autonomic diseases, focusing on autonomic disorders, including those that affect the cardiovascular system. These embrace cardiovascular autonomic responses to gravitational change and key stimuli that we are all exposed to on a daily basis, such as eating, drinking and exercise. The Centre also covers disorders affecting sudomotor responses to emotional and physiological stimuli. Autonomic dysfunction affects many neurological and medical disorders and Professor Mathias’ clinic aims to improve diagnosis, understand physiological mechanisms and discover new treatments. Patients referred to the Unit include those suffering with syncope, PoTS and neurogenic hypertension.
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OUR fundraising STARS
A big thank you to all our members who continue to support us by organising fundraising events across the country. We cannot mention everyone individually but special mention goes to: Andrea Petrides and her colleagues at IPC held a sale of unsold goods at work, raising an amazing £750.00
Our thanks also goes to Rachael Hanson from Herefordshire. Rachael held a party in aid of STARS in August and raised a fantastic £210.00, thank you to all that attended Rachael’s party. Camisha Wilson also wrote to tell us about her recent 2.5k run – When I was younger I was diagnosed with RAS. I am 13 now and I am beginning to control the faints and fits I suffer occasionally. I enjoy looking through the newsletters and feeling part of an association and knowing that I’m not alone or different. The RAS alert cards have been great since I started senior school and I felt the need to give something back.
Camisha with Mum and Dad Camisha Wilson
Both my parents decided to run the Great South Run 2009 and as I enjoyed the challenge of cross-country at school I decided I wanted to take part too and so I entered the Junior Great South Run. I found a star wand and head boppers to dress up in to raise some awareness of STARS.
It was a great day but very wet and windy! With the support of my family I finished the race in 12 minutes!! I feel I’ve achieved a lot and I am keen to run again next year.
Camisha did very well and raised over £100 for STARS! Hi STARS
Terrific Twins!!
Please say a big thank you to my Auntie Margaret and her friend Sarah. They ran the 10k race on the 17th May this year at Bellahouston Park (Glasgow) to raise money for STARS (£179.00).
Tommy and Danny Brooks; very kindly asked their friends and family to make a donation to STARS instead of bringing a present to their third birthday party on 20th October, they raised a wonderful £20.00 between them.
My name is Nicola Thomson and I am 12 years old, I have had R.A.S. since I was two but it was not diagnosed until I was nine. Margaret Adams and her friend Sarah
I haven’t had any seizures for a couple of years but I am still interested in helping the charity as it is the best place to get any information you need about R.A.S. Thank You Nicola (age 12)
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y daughter Tara was struck down with POTS on 26th November 2006 at the age of 19 having previously been in good health. After many months of getting diagnosed and finding appropriate medical help it has been a great struggle for Tara and our family. There are many associated problems apart from the condition. There is no formal POTS contact group, although Tara has found some other POTS sufferers on various social networking sites. There appears to be no national record of patients or any information about recovery, prospects or ongoing research (of which I can’t find any). I know that STARS incorporates this condition and we are all grateful for that.
M
200 Mile Walk for POTS
As a result, I decided to try and raise some funds specifically for POTS - STARS kindly agreed that money raised would be targeted to research and/or raising profile of this debilitating and life-changing condition. Although I quite enjoy a walk I decided to take on the cross country route from St Bees in Cumbria to Robin Hoods Bay in Yorkshire. Anyway, I started the walk, known as the coast to coast, on 18th September and completed on 1st October. The official distance was 192 miles but, with mistakes and accommodation off route, this comfortably exceeded 200 miles. Despite having one rest day in Richmond it was a very tiring journey but despite severe blisters it was a great experience, especially the mountains and hills of the Lake District.
while if anyone else wants to add to this splendid total. The site is http://www.justgiving.com/POTSresearch Let’s hope that we can make progress on this awful condition which I know can have a range of symptoms which vary from patient to patient. Andrew Stanley Kent
The total raised was £3,675 which far exceeded my expectations and was down to the generosity of friends and family. I am keeping the Just Giving site open for a
MORE
fundraising STARS
One of our first members and volunteers,
Jackie
Jane and Jennifer Mackay
have been fundraising again for STARS! Jenni, who is making quite a name for herself in Scotland with her beautiful voice, organised a concert in aid of STARS in October at the Motherwell Civic Centre. She also sang in a Christmas concert in Coatbridge, so STARS would benefit with a donation from the evening. As we go to press we do not have a figure but due to all their fundraising during the year, the Mackay family will have raised hundreds of pounds during 2009. Thank you so, so much.
Mellor, emptied the collection box she has at her local garage, Aller Vale Garage of Kingskerswell, and sent us a cheque for nearly £40. Over the years, Zoe Soudain the Manager of the garage has raised over £200 through keeping a box by the till. Thank you!!!
Shan Seewooruthun from Poole
sent us a cheque from The BC Club for nearly £600. The Bournemouth Charity Club was formed by a group of businessmen who wanted to raise funds for worthy causes and STARS was one of them! Thank you!!!
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MONTE CARLO OR BUST B
eing diagnosed as having Syncope was a mixed blessing for me. On the positive side, I finally knew what was wrong with me after 20 years and I could take steps to reduce the severity and frequency of my attacks. But, on the negative side, I was told that I would probably lose my driving licence. I had already collapsed on a plane and a train and travelling was a fundamental part of my job. If I couldn’t travel then I couldn’t work. My employer put me on medical suspension for an indefinite period of time and told me that I would probably never return to work. To make matters worse, I live in a small Somerset village on the edge of the Mendips with an infrequent bus service to a slightly bigger town, and no links at all to my employer or the bigger city.
So, in August last year, I cycled from my home in Bath to the Italian border near Monte Carlo. We cycled down to the ferry at Poole, caught the boat to Cherbourg and then cycled diagonally across France to the Alps; we cycled over the High Alps through Monte Carlo and on to Italy. Together with my friend, Guy Gudmunsen, we cycled 980 miles in 14 days across five mountain ranges and the highest road in Europe (Col de la Bonette, 2800 metres). Thanks to the fact that my brother drove a support car with our luggage, we were able to ride at pace. We covered about 100 miles per day on the flatter days and about 60 in the mountains. It was a great journey from beginning to end, a real boys own adventure. We carried maps in our back pockets like two kids looking for treasure, stayed in haunted houses and were chased by dogs and French lycra clad cyclists more times than I care to remember. I’m surprised to say that neither caught up with us – we must be fitter than we thought! The weather hit 40 degrees some days and we battled 100mph winds on the final leg of the journey. We swam in the sea on the Riveria and jumped in water fountains to cool off in Provence. We cycled through the clouds and into the mountains and descended for hours on marble smooth roads. We were chased by cars on the Grand Prix circuit in Monaco and raced the scooters in Nice. Now that’s what I call a holiday!
“...travelling was a fundamental part of my job. If I couldn’t travel then I couldn’t work” So, there was no other option, I got on my bike, or rather I bought a bike as I hadn’t cycled since I left school 23 years ago. The first few rides were challenging and I struggled to do more than a few miles or get up the hills, but it did strike a chord, there was a sense of freedom and adventure about exploring the country lanes, getting lost and finding places for the first time that felt like being a kid again. I would often come back covered in mud, wet, tired and aching but exhilarated. I would look forward to my rides and gradually they became easier. I slowly increased the mileage from 5 to 10 to 20 to 50 miles. Then, whilst out on a Saturday ride with a friend I asked a now infamous question “How spontaneous do you feel?” Many hours and 130 miles later we arrived back home. We had retraced a ride that my Dad had done 50 years before and it felt great. After that there was no looking back. We would regularly cycle 80, 90 or 100 miles on our Saturday rides and we started challenging ourselves with harder and tougher terrain. We cycled in all winds and weathers and I kept cycling through the snow, sleet and blizzards of winter. The funny thing was that it felt great. It was exhilarating. I loved the battle.
The trip was fantastic and it was great to raise money for STARS, but it was important for me to prove that having syncope needn’t stop you living a fit, healthy, active and rewarding life. Getting to the Italian Border may be the end of the trip, but it isn’t the end of the journey and I am already dreaming about Italy, or Spain, or America, or…..
Thanks to STARS and a very supportive consultant I kept my driving licence and my job. I have been free of syncopal attacks for three years, but I was now hooked on cycling and looking for bigger challenges and a chance to repay my debt to STARS. Cycling seemed apt as it was inextricably linked in my mind to the difficult times that I went through in the year that STARS supported me.
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If you would like to read more and sponsor me, visit www.justgiving.com/martinnichols Martin Nichols Bath
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Carol Phillips sky-diving for STARS
Thank you to Carol Phillips from Gloucestershire who sent us a cheque for £81 in recognition of the support we offer, with this description of the day. We think she enjoyed herself! “On 31st October my dream became a reality and I jumped! It was a birthday present from my children, Andrew and Jenny. I can’t describe what this experience was like. I can’t remember being nervous, although the pictures say otherwise! It was awesome and I could have stayed up there all day. It was so peaceful. Thank you to everyone who sponsored me at Monmouth Comprehensive School and Coleford Slimming World and to Sky-Dive London for keeping me safe!”
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Here’s one idea!
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Fundraising Booklet
and individuals, families Working together with to offer support and ls medical professiona c Seizures pe and Reflex Anoxi information on Synco 1084898 Registered Charity No.
©2009
Have you ever thought abou t helping to raise money for STARS? There are so many different ways in which you can fundraise and it doesn’t need to be a lot of hard work either – fundraising can be good fun!
We’ve designed a Fundraising Booklet to set your imagination in motion, but we ’re sure that you will have lots of ideas of your ow n. You can download the booklet by visiting www. stars.org.uk. If you’re interested in fu ndraising, in need of some ideas or support from STARS, please email fundraising@stars.org.uk or call 01789 450564. We look forward to hearing from you!
KATRINA’S WINTER WORDSEARCH
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EDUCATION SCHOOL
CARD
Danielle, my 15 year old daughter, had been fainting for the past year, sometimes as often as twice a week. A consultant at our local hospital diagnosed the cause to be stress and anxiety. He suggested we speak to her school regarding her studies and timetable and encourage Danielle to take up a new hobby. Her Head of Year was very supportive and suggested Danielle be given an Exit Card. This is recognised by the teaching staff and allows the holder to leave a class at any time should he or she feel in a stressful situation. Three months elapsed and Danielle did not faint. She was happy and confident to attend school because she did not feel any stress or fear as she was free to exit should she feel faint. She became totally absorbed with her dance group and did not have time to sit around being anxious and worried about life. After four months she was discharged from hospital and is not on any medication! She is undergoing counselling sessions to learn how to deal with stress and in the meantime will continue to have the school Exit Card if she feels anxious in any lessons, and is keeping up her dance lessons which make her so positive and more confident. I do not know whether these Exit Cards are used by every secondary school but I recommend any parent whose child is experiencing similar problems to Danielle to discuss this method of support with their child’s school. Another problem which I am sure must be a constant worry to parents is ‘exams’!! Some might be encouraged by Danielle’s school’s handling of this problem.
Danielle had to sit her GCSE Science exams recently. I was very nervous and thought she would faint. She attended yoga the night before the exam and the next morning was very calm. The school allowed her to sit in a smaller room with only 5 other pupils to do the exam. The examiner was very kind, she was told she could snack or drink water if she needed to and if she felt herself panicking to tell the lady in charge of the exam. Danielle managed to complete all 3 science papers and rang me feelong really happy afterwards. I really think the fact that she was not put in a large room with hundreds of other children helped her. She agreed with this too as she did not feel as though she was taking exams! She said when she saw the large hall with hundreds of desks, that made her panic alone and she would probably have ended up at A & E! Debbie Butterfield Essex
Our popular STARS Syncope and RAS Alert Cards are available in packs of 20, at the low price of £1.00. “working together with individuals, families and medical professionals to offer support and information on syncope and reflex anoxic seizures”
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Just the size of a credit card, the STARS Alert Cards provide key information for new carers, work colleagues, family friends, schools and the general public and so help YOU! Please send a one pound coin with your name and address, marked RAS or Syncope cards to Jenni Cozon, STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD.
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ORDER YOUR PACK NOW! Word Search Answer: HAT
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Dear STARS members Without your stories we have no voice…
READ ANITA’S DIARY ON NEW STARS WEBSITE For the past few years many of you will have read about Anita Kiernan’s battle with POTS and her determination that it would not intrude on the special events in her life – getting married and having a baby! It was bad enough that she had to forego her nursing career and accept a desk job with the NHS – who were very supportive by the way!
I would like to thank everyone who has already been willing to share their story and write for the STARS newsletter. Reading about someone who has been through the same diagnosis, treatment and concerns can provide great reassurance, support and advice for others who are going through the same condition. This is why it is so important for STARS members to share their stories! Patient stories are an important way of getting the message out there and this is where we really need your help. Would you be happy to share your story via our website, newsletter or be interviewed by a journalist for the health section of a magazine or newspaper? Whatever you do will help us raise awareness of syncope, RAS and POTS.
As an encouragement to those sufferers of POTS and VVS who are worried about becoming pregnant and coping with motherhood, Anita has written a diary of her pregnancy. This is on the STARS website… and she has agreed to update it at regular intervals. We are very excited and are so grateful to Anita for undertaking this. We know how demanding motherhood can be, especially if you are struggling with POTS.
If you would like to share your story then please email pippa@stars.org.uk or write to Pippa at STARS, PO Box 175, Stratford upon Avon, Warwickshire, CV37 8YL. We can then contact you to talk in more detail about what you would be happy to be involved in but with no pressure if you change your mind!
COMING SOON …. Information sheet on POTS and Syncope during Pregnancy
We cannot guarantee that every story will be used but the more stories we have, the more awareness we are likely to achieve. Thank you and I look forward to hearing from you.
STARS YOUTH MESSAGE BOARD “We seek him here, we seek him there...”
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Hello everyone – where are you?
STARS Education DVD COMING SOON...
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A new STARS DVD is being developed to educate teachers, staff and carers on syncope and to provide information and advice on how to manage syncope in the learning environment. STARS Education DVD will be available in the coming months.
We set up the youth message board to provide a medium for our young members to talk to each other, sharing their experiences, talking about their condition and even offering reassurance to each other when they were feeling low or frightened, and you have all gone quiet!!! If you are 16 years or under (18 years if still at school) and would like to chat to others experiencing similar symptoms and emotions as you, then why not join us by going to http://www.stars.org.uk/education/ html/message_board.html - not forgetting to ask permission first, of course! The Board is moderated so your family can be sure you will only be talking to fellow members.
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SAFE ARRIVAL
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hen I was first diagnosed with Vasovagal Syncope (VVS) on the tilt table at a hospital in Newcastle, my mum asked if I would still be able to have children. My consultant said “of course“. Eight years later I married my university sweetheart, Marco, and both of us wanted children. I had spoken to other VVS sufferers and discussed pregnancy and childbirth but no answers were the same and the experience, despite the same condition, was unique. I had no idea how pregnancy and my condition would go together and couldn’t seem to get a definitive answer. It also crossed my mind, as I have other family members with VVS, whether I would be passing this condition onto my child.
When I became pregnant in March, my whole body seemed to go into shock. My mum always told me that as a child, I never coped well with change and I can always remember simple things being an ordeal like a school trip and then, as I got older, job interviews. I would always work myself up into a mad state of anxiety and just collapse or be sick from exhaustion.
Determined to enjoy months five and six of my pregnancy with one last holiday alone, Marco and I decided to go to Cyprus for a week. The holiday was in the lovely family resort of Paphos, the island was beautiful but I suffered in the heat. By the end of the week I felt really dehydrated and couldn’t stop going to the toilet. I felt that something was wrong so we checked into a local medical centre only to get the shock of our lives when they informed us I was having contractions. This was the beginning of a ten day ordeal – the first clinic I was in was awful, no nurse spoke English and we had to argue over the drugs they were trying to administer. We couldn’t begin to get them to understand that I had a pacemaker and we both felt helpless.
“It felt exactly like the beginning of a seizure…I had to remind myself that it was morning sickness” The first 16 weeks of my pregnancy, I was so ill I could barely get off the sofa; I had terrible nausea and stomach pains. It felt exactly like the beginning of a seizure all the time and I had to remind myself that it was morning sickness. Part of me felt sure that VVS had created an extreme reaction and I went to visit my medical practice to get some help. My GP was very sympathetic and referred me to a cardiac obstetrician who said it was all normal and just to grin and bear it. I also felt the anxiety side of my VVS go into overdrive and kept it really quiet amongst my work colleagues.
“I would recommend this for everyone who has VVS and is pregnant to ask to see the anaesthetist” Our insurance company advised us to move to a bigger private hospital in Limasol where we were assigned a fantastic obstetrician who understood VVS. He also showed us in a scan that my womb was “funnelling” – opening and closing from the inside, right next to my baby’s head. He introduced some drugs to try and stop this, but unfortunately these drugs clashed with my VVS as they were a form of beta-blocker – he had to measure the dose carefully as he said otherwise, “you will slip into a coma.” It accelerated my heartbeat to 110 beats per minute which made me shake uncontrollably and vomit.
As the pregnancy progressed, I felt like myself again. However, I was concerned how VVS would affect me in labour because the two main triggers for my symptoms, and in the past, seizures – pain and not being able to eat - were obviously going to be a factor. In fact, I got it into my head that I would become unconscious, put the baby at risk or deprive him of oxygen, and I would end up with an emergency caesarean. Obviously, I knew my pacemaker would help, but as I had not experienced the extreme pain of childbirth I was unsure of how my body would react. I tried to find some answers to these questions but at the antenatal clinic, although I was under consultant care, I would see a different member of his team and never the lead consultant. I would then have to explain my condition and my concerns over and over again and still not get a straight answer. I was also promised an appointment with an anaesthetist which never materialised.
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Marco & Antonio
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be unconscious during labour and he would come up with a “pain plan” to help me. The plan revolved around an early epidural so the main trigger for the VVS (pain) would be under control. At this point he also offered me a caesarean, but said there was no reason other than pain why I couldn’t deliver naturally. We left reassured and went on a massive shop for baby things in a positive frame of mind.
After four days, the situation wasn’t improving so our insurance organised an air ambulance to take us home as I was 25 weeks – not a great time to go into labour. Once back in the UK, they diagnosed a urine infection that was irritating my womb and prescribed antibiotics but it took a good week to stop the contractions and I was kept in hospital. Part of me was sure that my sensitive VVS body over reacted and caused the situation to be worse.
Two weeks later, I went into labour at 35 weeks and had strong back contractions from the minute my waters broke. After the first hour, it quickly became obvious that I was unable to cope with the pain and my husband had to take control and demand the epidural. Unfortunately, the epidural didn’t work so for the rest of labour I was basically “not there” and my husband had to make all the decisions. The baby was born after two and a half hours and was described as “shocked” by the speed of it all. To this day, I have no idea whether it was my VVS which made me go into labour early and for it to have been so fast. I would be interested to know if these are common factors for other VVS labours.
“It also crossed my mind, as I have other family members with VVS, whether I would be passing this condition onto my child” Once back home, life went back to normal but we were worried. We desperately wanted to make sure our precious baby would be safe during the birth. We were disturbed by a letter we received from the cardiac team describing my pregnancy as “uncomplicated”. We wondered whether my consultant had read my notes. I immediately made another appointment to see the consultant but saw yet another registrar. My husband was really frustrated at this point (he is much more assertive than me!) and we eventually met the consultant but ironically it was the registrar who was more sympathetic and said who I really needed to see was an anaesthetist.
Our little boy Antonio was 5lb 12oz and we spent two weeks on an excellent transitional ward sorting out his jaundice and teaching him to feed as he couldn’t suckle. I had a few VVS episodes after the birth due to recovery but these passed after the first week. He is now home and doing well. My over-riding impression of going through the NHS system with VVS and being pregnant is this – medical staff often were ill informed and dismissive of my concerns. I felt that I was a nuisance and, as I always feel, medical professionals have no idea how anxious VVS sufferers can get and how to reassure and support them. However, I do have a lovely little boy now and will not worry so much if we ever have another!
This was by far the best advice I was given and I would recommend this for everyone who has VVS and is pregnant to ask to see the anaesthetist. He was matter of fact and told me what would and wouldn’t happen – he said that there was no way the baby would be deprived of oxygen during labour because of VVS and that my condition would only affect the way I dealt with the pain. He said with my pacemaker there was no way I could
More safe arrivals from our Syncope and POTS mums… Adorable Oliver Cattermole (mum is Fiona) was born on 14th July 2009, a bouncing 8lb 4oz!
Joanna Verity Alice Martin. Born on 15 August 2009 and weighing only 4lb 7oz, Joanna is now doing very well and much loved by her sister Bridget. Joanna’s Mum, Clare, wrote our first article on POTS and Pregnancy, which provided encouragement and reassurance to many of you who are now mothers!
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for ourselves but also our friends and family. Louise’s brother Matthew (4.5 years old at the time) was a great and an excellent observer. He was the first to shout out if she was having a seizure and, if she hurt herself, just to be a little more on guard for the next couple of minutes.
GOODBYE RA S ?
Louise attended nursery full time and we worked closely with the staff to help support Louise through this. The information leaflets available from STARS are excellent and we immediately passed them on to the nursery staff. We also drew up a care plan for the staff to reassure them that the seizures might look life threatening but Louise would be fine. When Louise had a seizure, the staff made a note of the time, texted my husband or I and made sure that Louise was comfortable during her sleep. The staff became confident in dealing with the seizures and treated Louise ‘just like a normal child’ as recommended in the leaflets.
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ouise had her first real episode when she was 8 months old. We went to the Royal Hospital for Sick Children in Aberdeen, where the doctors did a series of tests including bloods and urine analysis but found nothing. They released her later that day with a possible diagnosis of febrile convulsions. Leading up to her first seizure, we had noticed that Louise had some moments when she looked dazed and would become ‘floppy’ for a few minutes. We now think those incidents were ‘near misses’.
Louise, now 5 years old
Louise’s seizures returned a couple of weeks later. We were referred to a neurologist who recommended that we tape any further episodes on our camcorder. This was extremely distressing and difficult to do, but very important. We returned to our doctor who viewed the seizures on the video and referred us to Neurology at the Royal Hospital for Sick Children in Edinburgh.
Between 8-14 months they would happen at least once a week and occasionally twice a day (our worst was three in one day). We couldn’t really find any reason for them except perhaps teething and the pain that this caused (particularly overnight). Between 14 months – 2 years, her seizures became much more ‘reflex’ in that there is a definite stimuli (injections, bang to the head). We found this much easier to deal with.
“The information leaflets available from STARS are excellent and we immediately passed them on to the nursery staff”
Louise has not had a seizure in almost two and half years and we are hopeful that we have seen the last of them. Colin also suffered from RAS as a child which now manifests itself as syncope and fainting. At the sight of blood (even Casualty or ER) or the sight of needles, he can faint. We have been waiting for this to start with Louise (Colin had his first fainting attack at age 5) but she has undergone further inoculations, general surgery to have her teeth out and more than her fair share of bumps and bruises but seems ok. We certainly haven’t become complacent and continue to let anyone new know about her condition but it is nice not to worry about it every minute of every day. When Louise was having her dental operation, it was particularly important to discuss her RAS with the anaesthetist and the dentist. Louise was considered a medium risk case and as such, was monitored slightly more closely than a normal child would be during a similar procedure.
Within two months we attended an appointment at the hospital. They took one look at the video and asked us to come for an EEG. The video allowed them to see things that we could only describe with very little detail (it’s so hard when your child is having a seizure and you are trying to cuddle and observe at the same time)! Louise ended up having 2 EEGs (on two separate visits) both of which showed no abnormal brain activity or patterns. Again they tested her bloods and urine with nothing showing up. It wasn’t until our conversation with the specialist that the first mention of Reflex Anoxic Seizures was made. The consultant explained that they could find no reason for her seizures and said they might be Reflex. We asked what this might mean for Louise in the future and he said that she might be prone to fainting. Suddenly everything fell into place!! Colin, Louise’s Dad, is very prone to fainting and has been his whole life. Any excessive stimuli including needles, gory films, birthing class and even a simple garden maze, can cause him to faint. On further discussion with Colin’s Mum, it turns out that he often had seizures as a child too! The doctor explained that Reflex Anoxic Seizures are often hereditary. Reading other people’s stories we are very lucky to have met a doctor who was aware of Reflex Anoxic Seizures and have had such a prompt diagnosis.
Looking back, it is difficult to remember just how hard life was at that time but with the support of STARS we made it through our first hurdle! The information we accessed on the site was invaluable and helped us support Louise and indeed our whole family. We look at her now, a vivacious and gorgeous 5 year old, and can’t imagine that we ever went through what we did. Our message to all parents and sufferers is to keep hope and be strong. Things can get better.
Returning home, we searched the internet for information and found STARS! What a relief to find others in our situation and more information. It helped explain things
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Fiona, Colin, Matthew and Louise Scotland
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Why I support STARS during Arrhythmia Awareness Week
I
was diagnosed with Vasovagal Syncope about 14 years ago having had a series of bad fainting episodes that landed me in hospital. A series of 24 hour heart monitors, treadmill tests and walking around the ward followed but my body failed to perform under observation much to the annoyance of the professionals and me too. I knew there was something wrong but could not get the medics to believe me or maybe that was just my perception. After the dreaded tilt test all was revealed! I say dreaded as, although it is standard procedure, to me and my family it caused great stress. How come you may think, but for my poor husband, Steve, waiting outside the test room being told by a very excited medic that “something has happened!”, particularly when he was not in the best of health himself, was not the best news. Only the worst flashed through his mind and he imagined me dead inside that dark room, alone and not having been allowed to be with me and hold my hand. Even the reality of the fact that I was alive and had a diagnosis of syncope did not help….
Rhys (11 years) and Catrin (7 years) helping Mum raise for STARS found out her GP’s brother was a heart consultant! So that was a long talk but Welsh women can talk!! Both my children are home educated and attend a very active local group of home Ed children and it just so happened that their theme last year was bodies! Having coached them in the different types of syncope, RAS and like conditions, they went off armed with collecting box, leaflets, bookmarks and bears. My son [aged 11] did a wonderful talk about it, told them all that “Mum has it” and raised £26 even selling a bookmark. I did tell him after that they were free to give away but he was nonplussed that he had sold two for 50p… perhaps he’s destined to be a salesman…
“STARS have made me appreciate that I am not alone and have support as and when I need it” After a period off work it was decided that medication was more appropriate for my syncope rather than a pacemaker and so the journey began. Anyway that was 14 years ago and we coped alone until Steve chanced across STARS on the internet about five years ago. In the intervening time we survived – I returned to full time work and learnt to recognise the signs and how to manage it, and keep upright with the care and support of my dear husband who monitors my ups and downs. I also now have two wonderful children who know about syncope and Mum’s funny turns!
For my part I persuaded my local health and fitness club in Hadleigh, to display the posters and leaflets for the week and have a pulse check day. One of their regular gym members changed her normal day especially. It generated a lot of interest and increased awareness of arrhythmia and syncope. Many thanks go to Cameron Tan and Gill Rawlinson for their support, enthusiasm and commitment and for having offered to help out and promote AAAW this year.
Having found STARS and read the leaflets, newsletter and been a regular lurker on the forum, I appreciate that I have a mild form of syncope, compared to others and mainly have pre-syncope attacks when I am tired or overworked – mostly by my own doing! I also now recognise that I have a family history of VVS [my grandad regularly blacked out!] and that I’ve probably always had it.
I also passed packs to my GP and work occupational health advisors. My latest venture is a charity second-hand book sale for a month at work, which has been extended by popular demand! Being a small manufacturing company it won’t raise too much money, especially at 50p a book, but every little counts!
I really appreciate the work that Trudie and the team do and I wanted to do my little bit to help raise funds and awareness. So for the last two years I have supported the annual Arrhythmia Awareness Week, sent off for the GP packs and passed them out locally. Last year I got more involved with fundraising and selling raffle tickets and STARS bears. I sold a few bears at Christmas; got my mum involved and she has sold 20 bears to her friends, through her Mothers Union group in Cardiff, given a pack of leaflets and CDs to her doctor, and
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Learning the signals and having the support of my family, especially my wonderful husband Steve, has helped me manage my syncope. STARS has made me appreciate that I am not alone and have support as and when I need it. Alison Pena Suffolk
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Elaine Portis 19 October 1959 – 2 September 2009 During the early days of STARS, whenever I picked up the telephone and heard the name Elaine Portis, I was assured of a positive and uplifting five minutes. Elaine was one of those people who called ‘a spade a spade’ but had a heart of gold despite not having the easiest of lives.
Amy & Elaine
She first contacted us in 1998 because her daughter Amy was experiencing unexplained blackouts. Amy subsequently joined Prof Stephenson’s study programme and as a result was given a pacemaker. Elaine was so grateful that the most important person in her life was now having the best treatment that she threw herself into raising funds for STARS so more children could benefit from our support. Donations from her father’s funeral (he died as Amy was being diagnosed) were given to STARS and Elaine never stopped working to help us raise awareness of RAS which, all those years ago, was virtually unheard of.
Elaine worked so hard to provide Amy with the very best that she could offer and she was fighting until the end to ensure Amy’s wellbeing and security. When talking to a well-known doctor a few years ago she commented “She really is a very extraordinary person and someone I have grown to like and respect very much”. I echo these words and we will miss you Elaine. Elaine Portis died on 2 September 2009 after a long battle with breast cancer. She will remain in our memories forever, giving so much and always willing to help others. I am sure many of you will remember the various articles in the early newsletters, encouraging other worried and frightened mums through sharing her long and distressing journey with Amy. Amy, her beloved daughter, is now living with her aunt, Sharon Meldrum, Elaine’s sister.
ArrhythmiA Awareness Week 7 – 13th June 2010
Trudie
Regional Meetings 2010 Patient Meetings STARS is pleased to partner Arrhythmia Alliance in 11 Patient Meetings between March and July 2010 and we would love you to come.
Know Your Pulse
These meetings will provide information on how to get the best out of your local services. There will be an opportunity to ask questions and find out more about syncope, as well as time to meet and talk with fellow members.
Like Alison Pena in the previous article, you too can join STARS in supporting Arrhythmia Awareness Week 2010. No event is too small and all your efforts help to raise awareness of syncope and arrhythmias. The Know Your Pulse campaign continues to run whilst we plug away towards routine pulse checks in GP surgeries. Why not sign on now by emailing pippa@stars.org.uk
Registration fee is £13.50 per person. This includes refreshments and lunch.
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Meeting Locations: Midlands: Birmingham & Oxford East Midlands: Cambridge South: Reading South West: Bristol North: Leeds North West: Manchester Wales: Wrexham and Cardiff Scotland: Glasgow Northern Ireland: Belfast
To register to attend a Regional Meeting, please complete and return this form:
Full Name: .................................................................. Tel: ............................................................................. Email: ......................................................................... Address: ..................................................................... .......................................... Postcode: ........................ Regions of interest: ................................................... I am a Patient/Carer - please delete as appropriate We will email/telephone when dates and venues have been confirmed. Please send to: Jenni Cozon, STARS, PO Box 175, Stratford upon Avon, Warks CV37 8YD or email Jenni Cozon: jenni@stars.org.uk
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