Issue No: 38
Take
March 2013
to Heart
Providing information and support on Syncope, RAS and PoTS
Happy Birthday STARS STARS celebrates its 20th anniversary Exercise rehabilitation for syncope and PoTS
Heart Rhythm Week 3-9 June 2013 How to become involved
Raising thousands for STARS after ten years of misdiagnosis Richard Bowie tells his story Registered Charity No: 1084898
A message from Trudie Lobban MBE, founder and CEO of STARS I cannot begin to tell you how delighted I am to be able to celebrate the 20th birthday of STARS with you all. I never imagined when in 1993 I was asked by Prof John Stephenson to establish a small patient group how far things would come.
As STARS has grown I have become more and more dependent on my wonderful team to help me and I could not have done it without them. The many volunteers, staff and one person you have all come into contact with – Jenni Cozon. Jenni was with me when my daughter experienced her first unexplained loss of consciousness and now works full time for STARS with all the passion and commitment I could wish for.
When I started out all those years ago, my aim was to help as many people as possible by ensuring they or their loved one gained access to the advice, diagnosis and treatment they needed. I did not want anyone to have to go through what my family and many others experienced while searching for a correct diagnosis – in my case for my young daughter.
However, by far the biggest thank you goes to you – you continue to provide our inspiration and motivation every day. It has made me immensely proud to see how many of you have taken up the banner for STARS yourselves, by fundraising or spreading the word about conditions which we all know can sometimes be debilitating both physically and mentally.
I also owe a big thank you to all the medical professionals who have supported us over the years in countless ways, and who have gone out of their way to provide their expertise at every opportunity.
As I came into contact with more of you and my knowledge began to grow, it became apparent I had only scratched the surface of a much wider issue and that understanding and awareness of heart rhythm disorders lagged way behind at every level. This had led to a situation where many thousands of people in the UK were in a state of misinformation and despair because they or a loved one had an unexplained or misdiagnosed condition.
So now is a time to rightly look back and acknowledge what we have achieved together. But, more importantly, it is a time to take the opportunity to strengthen our resolve and continue to do more of the great work we have achieved together. So please continue to support and help us with the same enthusiasm you have in the last 20 years. Best wishes
As a result, STARS became far more than just a support group. We have worked in the last two decades, with a great deal of success, to try to address this situation and have grown from strength to strength on the back of it. “When I met with Trudie 20 years ago and suggested she start a small support group, I never would have guessed that we would be where we are now. “She and her team should be incredibly proud, just as I am, to be associated with such a wonderful organisation.” Prof. John Stephenson, Founder Patron, STARS
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“A very happy 20th birthday to STARS. “This year is an important milestone for me as well. It’s ten years since I collapsed on a Broadway stage in the middle of a performance after a dangerous heart rhythm problem caused me to blackout. “Long may the excellent work they do in helping people and raising awareness continue.” Sir Roger Moore KBE Patron, STARS
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3 - 9 June 2013 Hearts & Goals Join hundreds of STARS members across the UK and help raise awareness of syncope and heart rhythm disorders Heart Rhythm Week provides a platform for individuals, groups, organisations and healthcare professionals to join together during one special week to raise awareness of syncope and heart rhythm disorders. This year’s campaign for Heart Rhythm Week is all about improving people’s chances of survival. Help us raise awareness of syncope, it may be the only warning sign of an underlying heart rhythm disorder.
What can I do? Whether you are working, learning or playing, there are many ways to get involved in Heart Rhythm Week!
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Give information to your friends and family.
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Display information in your local community by organising an awareness display in your local medical centre, nursery, hospital or leisure centre.
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Share your story for Heart Rhythm Week. Heart Rhythm Week generates a lot of media interest nationally, regionally as well as locally by you. If you think you could help, share your story.
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Bake cakes to sell at school, work or in your own home to raise funds for STARS.
How to become involved It’s easy! Contact Pippa to order your free Heart Rhythm Week pack to support your planned activity. Resources will be sent prior to Heart Rhythm Week.
Email: pippa@stars.org.uk Tel: 01789 451 833 Order online www.heartrhythmweek.org Don’t forget to send in your photos. The best photos from Heart Rhythm Week will be featured in the next STARS newsletter and online!
STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD
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Raising thousands for STARS after ten years of misdiagnosis Between 2004 and 2011, I considered myself to be healthy and accepted I would probably still have one or two blackouts a year – now mostly occurring in the shower. I was content, despite not being able to drive due to my epilepsy diagnosis. In August 2008 I met Elaine. During our relationship she witnessed my blackouts. Elaine encouraged me to get a second opinion. Eventually, in 2011, I decided to go back to my neurologist.
My story of blackouts began just after I graduated from university in 2001. Just as I’d started full time work I also picked up a neck injury which caused me a lot of pain. To compound the injury, I found sitting at a desk for eight hours a day to be torturous. My only relief was hot showers. This is when my blackouts started. They would mainly occur in the same two situations; the first was in the shower and the second was at work. At their most frequent, my blackouts were happening once or twice a week and at worst three times a day. As a result I was referred to a neurologist. I described my history. The doctor opted to investigate for epilepsy. I had all sorts of tests and they all came back normal. Despite the test results, I was prescribed epilepsy medication. During this time I reported back that the medication was not working. The neurologist’s course of action was to double the dosage and also add another drug. This loop continued but the frequency of my blackouts stayed the same if not increased. I then did something I wouldn’t recommend; I decided to gradually reduce my dosage until I was not taking any drugs*. Just after this decision, in 2004, my life went through other changes: I gave up rugby, moved jobs and found a physiotherapist to help me with my neck. My blackouts began to reduce in frequency. * It is important to always consult your doctor prior to stopping any medication
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Those 30 minutes with the neurologist were life changing. After listening to my story, looking at my history and listening to Elaine’s experiences of my blackouts he arranged for me to have an EEG and a tilt table test. I had the EEG setup at Aberdeen Royal Infirmary. I had a strobe test and my heart rate was also recorded over 72 hours. Next came the tilt table test. This is when I stumbled across the STARS website. It blew my mind reading all the information about syncope. The tilt table did have a positive result. My heart stopped for around 30 seconds and I was diagnosed with vasovagal syncope. I was started on new medication and told to keep hydrated and to add more salt to my diet. Today, I’m not 100% free of blackouts but when they happen, I understand why. I’ll always be grateful to Elaine for persuading me to get a second opinion. Richard Bowie, Aberdeen
Richard married Elaine in September 2012 and instead of jetting off on a relaxing honeymoon, they embarked on a ten day trek to Everest base camp raising over seven thousand pounds for STARS. Richard comments: “I’m overwhelmed by the support from family, friends and work towards my challenge - together, Elaine and I raised £7, 127.50 for STARS. “The journey was better than the end destination, meeting lots of people and seeing views that were stunning. That’s not to say Everest base camp wasn’t a highlight but there is something special about the journey there that is more special”.
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Ask the expert column Dr Nicholas Tullo, cardiac electrophysiologist, answers your questions
Q:“Over the last three months I have fainted five times for no apparent reason. My family urged me to see a doctor who immediately sent me for an ECG, which was normal. My doctor is now suggesting I should be fitted with an implantable loop recorder (ILR). What is the reason for this as my ECG indicated there was no underlying heart condition? I am in my mid-fifties and my father had a pacemaker fitted when he was 70 years old.”
A:
A fainting spell can be very scary to the individual as well as his or her family. It’s even more disconcerting when fainting happens repeatedly. Fainting (syncope) is never normal, so aggressive efforts to identify and correct its cause are appropriate for patients like you. In general, syncope occurs because of sudden reduction in blood flow to the brain tissue, which causes the brain to temporarily stop functioning. The physiologic cause of this reduction in blood flow is mainly due to a sudden drop in blood pressure or an abrupt change in the heart rhythm. Severe slowing or stopping of the heart beat for more than six seconds or so can result in sudden loss of consciousness, often without any warning at all. Rapid heart rhythm disturbances (tachycardia) can result in ineffective pumping action from the heart muscle (mainly because the heart doesn’t have enough time in between beats to fill) and a precipitous drop in blood pressure, causing a faint. Some people can have transient rhythm disturbances with a completely normal electrocardiogram (ECG) in between episodes, so having a normal ECG at the doctor’s surgery does not rule out an arrhythmia. At any rate, it may be difficult to diagnose the exact cause if the doctor isn’t there at the time of the faint. Most of the time, the details of the history are vitally important to the syncope specialist to get a sense of whether the cause of fainting is due to low blood pressure or perhaps due to an arrhythmia. Most of the time, a low blood pressure problem can be brought out by tilt table testing, which is designed to reproduce the most common cause of fainting known as “reflex” syncope (also known as vasovagal syncope). Tilt testing can also uncover problems with the autonomic nervous system which can lead to low blood pressure and fainting.
If an arrhythmia is suspected, then patients can undergo electrophysiologic (EP) testing to try to reproduce the problem. The yield of EP testing may be only 10-15% in patients with a normal ECG and a normal echocardiogram, but it may be higher if the history suggests an arrhythmia. Ideally, capturing a spontaneous fainting spell on a monitor will clinch a diagnosis. Attempting to record a spontaneous syncopal spell is challenging. External monitors like holter monitors (which run for 24-48 hours) are almost useless unless you’re “lucky” enough to faint in that short period of time. External monitors (known as real time outpatient cardiac telemetry) can be worn for 2-4 weeks and have a much higher yield than a holter monitor. Admittedly, they are inconvenient to wear, and for patients with infrequent episodes (occurring only a couple of times a year) the chance of catching a faint is disappointingly low. This is where implantable loop recorders are extremely useful. They allow us to diagnose cardiac arrhythmias that may be causing infrequent episodes of syncope. They allow physicians to monitor the heart long-term (the battery lasts for up to three years), and if your episodes are perhaps two or three months apart (and assuming your tilt test was normal) then an ILR might make sense. From your description, however, it would appear that your episodes are more frequent than that. If you are fainting every couple of weeks, then it might be more appropriate for you to wear an external monitor to try to catch a spontaneous event, rather than undergoing a surgical implant at this time. Dr Nicholas Tullo Cardiac electrophysiologist, West Orange, New Jersey Member of STARS Medical Advisory Committee
STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD
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Exercise rehabilitation for syncope and PoTS – my experience When I first read about exercise therapy I thought, “are the clinicians just saying that postural tachycardia syndrome (PoTS) patients are unfit?” I used to be very active as a teenager and in my early twenties, with lots of sports hobbies - horse riding, judo, gymnastics and dancing but as my symptoms increased there was a continuous gradual reduction in activity. I think it is a fairly normal response to try to avoid triggers; and since I was regularly stumbling off the cross-trainer at the gym, lightheaded, or nearly collapsing at salsa dancing classes, I began to avoid these things over time. Even “gentle” activities like pilates or yoga classes became difficult because of all the postural changes and stretching – at my worst period in 2007-8 looking upwards or stretching to yawn were enough to make me almost blackout, and I was having around 30 semi-conscious episodes or collapses per day. Consequently any formal exercise seemed out of the question at the time. Perhaps if I knew then what I know now, I would have had the “tools” to try to maintain some muscle strength and reduce the deconditioning in a safe way. There has definitely been a pattern of long peaks and troughs over the last 18 years, and I certainly feel more geared up now to avoid a big spiral downhill, or at least reduce the severity of the spiral, if my condition does deteriorate again. But back then I just felt safer avoiding exertion as it only seemed to make things worse. By the time I returned to work after maternity leave in 2010, I was better than in 2008 but still quite symptomatic each time I stood up, and I was really struggling pushing the pram home from nursery after a busy workday. I would stand up to get out of the taxi, nearly collapse, enter the nursery, nearly collapse again with the change from cold to hot, and then had a walk home to get through with a racing heart, legs like lead,
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and my vision going blurry when I stopped at the pedestrian crossing. I was grateful for a pram to lean on, but frightened of passing out whilst responsible for my child! The fatigue was overwhelming and my pre-syncope symptoms were quite severe, especially in the evenings. Fortunately my symptoms began to improve throughout 2010-11 as I started on new medication, under the careful and expert guidance of the Autonomic Unit at the National Hospital for Neurology and Neurosurgery in London. I was interested in the concept of exercise therapy. I followed the rationale that the more cardiovascular fitness I had, the better my body could deal with the stresses and demands that PoTS added. I also understood the logic that if my leg muscles and core tummy muscles were stronger they could push the blood back up to my brain more effectively with each muscle movement; and they could help to prevent the blood from pooling when standing up. It made sense, but I just didn’t know what to do, or how to do it. Climbing a flight of stairs was enough to make me almost pass out, so how could I exercise safely? Furthermore, I had a dilemma: the autonomic specialist nurse had advised me that I needed to conserve energy in order to manage my fatigue, and we had discussed some helpful, practical tips. But how do you conserve energy if you also need to expend it through exercise to try to improve your symptoms? During summer 2011, I was fortunate to be referred by my GP to a cardiac rehab highly specialist exercise practitioner at a local hospital. I was not the usual kind of post-heart attack patient that the clinician generally saw, and he had not come across PoTS previously. However, he contacted colleagues from the Autonomic Unit in London, spent some time researching and understanding my medical condition, and used his specialist experience with exercise rehabilitation to devise a programme for me. It was individually tailored, because everyone’s starting point is different. Some syncope and PoTS patients may still be very fit (but perhaps less so than they used to be); some people may be wheelchair-users due to the
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severity of their symptoms, and consequently the deconditioning in the leg muscles may be greater. The manifestation of symptoms might also differ for people with PoTS. For example I experience multiple lightheaded and near-blackout symptoms daily (with warning signs and specific triggers), whereas other people may have a more predominant symptom of nausea, chest pain or persistent tachycardia. I have cough syncope and also struggle with changing from cold to hot environments, so swimming can be difficult for me on both counts. But this might be an ideal method of building up cardiovascular fitness for someone else. Therefore symptoms of the syndrome may present different challenges for each person, and this needs to be managed on an individual basis; consequently there is no “one size fits all” programme. However, there is a set of general principles for exercise rehabilitation, which Edward Caldow, exercise physiologist, shared at his presentation at the STARS Patient’s Day in September 2012. (This can be found at www.stars.org.uk) I hear from other patients that exercise does not work for everyone, since there may be other side-effects that are very difficult to manage, or it may not improve their symptoms sufficiently (perhaps when their starting level of fitness is higher). These are very valid points, and I fully accept that everyone is different, just as people respond to medications in diverse ways. In the full article which is on the STARS website, I am sharing my personal experience to show how exercise rehabilitation has helped my individual situation - in combination with good medical management and occupational therapy - in the hope that it could help someone else too. My exercise rehabilitation has been hard work – and it still is - if I am truthful, because this has to be a lifestyle change for the long term; so I had to make changes psychologically and practically, with help from my husband, to make it sustainable. However, this is
the same principle as any other person who embarks on a long-term healthy eating or exercise plan – there is no quick fix and you have to change how you think and behave. A conversation with the autonomic specialist nurse in London at a review appointment really helped me. She pointed out that neurological conditions are fraught with ups and downs and so exercise rehabilitation for PoTS will never be linear – that is, I should not expect to achieve X fitness level after doing Y exercise Z times per week, it is more complex due to the fluctuations in the condition by the hour and by the day. I also had to get used to the fact that increasing the heart rate is a normal part of exercise. I get so many palpitations and I am so aware of my heart rate or rhythm that it took quite some time to get used to the fact that a rising heart rate is a normal response to exercise and did not necessarily mean I was going to collapse. It’s not perfect. But there are now many more good days! I do truly believe that the exercise programme has had a strong impact on my quality of life. I have improved my standing tolerance, which means that on good days I feel more able to stand at a bus stop for a few minutes, or in a shop queue on my own, so I feel less dependent. I don’t think there is one thing on its own that will ever be “the answer” – PoTS is a long-term, complex condition. Exercise therapy may not work for everyone, as all syncope treatments seem to be a matter of trial and error. I still have daily symptoms – but a lot less than this time last year. So all I can say is that my personal experience has shown me that exercise rehabilitation, alongside occupational therapy support, medical treatment and lifestyle changes, has made a big difference to me and my family, and I would encourage anyone to give it a try. Anita Kiernan, Salford Anita’s entire experience with full details of her exercise regime can be read on STARS website, www.stars.org.uk
STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD
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Fundraising STARS We would like to say a big thank you to everyone who has fundraised for STARS over the last six months. With a number of STARS supporters throwing themselves out of planes, walking or running the length and breadth of the UK, providing friends and family with tea and cake; 2012 proved to be our best fundraising year to date. Let’s make 2013 even better! This is what our fundraisers have been up to since summer 2012: • Deborah Irvine nominated STARS to benefit from her work’s monthly jeans Friday. £168.75 was raised from going casual. Thank you to all those who wore their jeans in aid of STARS. Hollie Spencer & Ashleigh Cassan trekked 40 miles from Brighton to Hastings for STARS.
• 4th Potters Bar Brownies and Guides organised a coffee morning and raised £150 for STARS. Thank you to everyone who made the coffee morning a huge success. • 40 miles is the distance PoTS sufferer Hollie Spencer and her friend Ashleigh walked to raise money for STARS. Hollie and Ashleigh raised over £1000 following their trek from Hastings to Brighton. A fantastic achievement! Well done.
Oscar Doyle ran the Ipswich Half Marathon.
• Jill Bradbury and her work colleagues forewent Christmas cards and instead collectively made donations to their nominated charities. STARS received £50; thank you to all those who participated. • Mrs Bennett donated her jar of small change to STARS, £25 was gratefully received. Thank you. • Oscar Doyle participated in the Ipswich Half Marathon in September, raising over £500 for STARS. Thank you and well done!
Lucy Fellows with her Olympic torch at STARS Patients’ Day.
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• Lucy Fellows took her Olympic Torch to our annual patients’ day in September and raised £15.80 by asking for donations in return
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for a photo opportunity with the torch. What a fantastic idea. • STARS member Fiona Turner raised over £300 during her daughter’s 16th birthday party. Thank you for thinking of STARS and to everyone who contributed. • Mrs Green raised over £150 as a result of donations received whilst celebrating her Golden wedding anniversary. Congratulations and thank you. • STARS Patron South Devon chef and TV star John Burton-Race competed in new BBC series Put your menu where your mouth is to raise money for STARS. Each day within the competition two chefs went head to head to buy food, prepare dishes and sell food to diners at Britain’s high-end restaurants. The profits made from the competition went to each of the chef’s chosen charities. John donated his £810.20 profit to STARS. We are extremely grateful. • STARS member Catherine Reid, nominated STARS to benefit from Banbridge Academy’s ‘A sense of occasion’, where wedding dresses from the 20th and 21st centuries were showcased. £286 was raised from the event. Thank you to Tracey McKee for organising the event. • STARS avid supporter, Sally Hamilton-French, received £100 donation from her local Sainsbury’s store and a further £25 from her own business, Golden Hands. Thank you for your generosity. • We received £60 from the Commissioning Team at NHS
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Salford, to which one of our longstanding volunteers, Anita Kiernan, belonged to, until recently. They kicked off 2013 with their monthly cake sale and chose STARS to benefit from the proceeds. Despite everyone claiming to be on diets after Christmas, the cakes were snapped up in no time!! Thank you bakers and buyers!! • Chris Tennison won his companies ‘Movember’ and chose STARS to benefit from his winnings. Thank you Chris.
Apologies to anyone we might have missed in our list of fundraisers. We are extremely grateful to all of our fundraisers and will look to include your event in our next edition. We would also like to take the opportunity to thank those who have volunteered their time or have donated to STARS over the past six months; you have all helped make a difference, enabling us to provide 24 hour support, 365 days of the year. If you have felt inspired and would like to fundraise on behalf of STARS, by participating or organising your own event in the UK or abroad, contact the fundraising team by emailing fundraising@stars.org.uk or telephone 01789 450 564. From treks to swims, from bike rides to skydives there is something for everyone. You choose your challenge and your goal. Here are a few fundraising events to tantalise your taste buds.
UK
Sally Hamilton-French received £100 donation from her local Sainsbury’s store.
• Swim Series – five dates and five locations, taking place throughout the summer months • Coast to Coast – cycle from the Irish Sea to the North Sea, 15th – 18th August 2013 • Thames Path Challenge, 100km or 50km. Walk it or run it, 14th – 15th September 2013 • The London Duathlon – run and swim your way around London, 15th September 2013 • Bupa Great South Run – 10km or 5km, 26th and 27th October 2013
Abroad STARS are registered with companies that organise lots of different challenges. These challenges are open to anyone wanting to raise money for charity. These trips vary in duration, from weekend trips including cycling from London to Paris, to following in the steps of celebrities by climbing Mount Kilimanjaro. STARS Patron John Burton-Race on Put your menu where your mouth is.
Give in Celebration This year STARS is celebrating its twentieth birthday. Celebrate with us and hold a birthday party in our honour. • Hold a cake sale at your school, office or house and charge a fee for your edible goods. • Celebrating a Birthday? Why not ask for donations to STARS instead of presents. • Host a fancy dress party and get everyone who attends to dress as celebrities (STARS) and make a donation.
Chris Tennison sporting his ‘Movember’ tash
• Dress down/up day at school or at work, and a fee for the privilege.
STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD
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Without STARS I dread to think where we might be now! In the early part of November 2011, our eleven monthold daughter Georgie-May was having a terrible time teething. One morning, Georgie cried out suddenly, as if in pain. I picked her up, thinking it must be her teeth, and she immediately went limp in my arms and appeared to stop breathing for a few seconds. Our GP checked Georgie over and decided it was likely to be a very mild form of breath holding. I went home reassured. Just over four weeks later it was Christmas morning, we were expecting the family for lunch and I had put Georgie down to play with her brother. Literally seconds later, she was limp and floppy; lips blue; eyes rolled back in their sockets; white faced and not breathing. We immediately rang 999. She began to breathe again within about 30 seconds. Once at the hospital, the paediatrician advised it was either “one of those things babies do” or a “febrile convulsion”. He recommended that if it happened again to try to catch it on film.
“Literally seconds later, she was limp and floppy; lips blue; eyes rolled back in their sockets; white faced and not breathing.”
On New Year’s Day, after a lovely afternoon at our grandparents, we returned home with very tired children. Almost the moment we were through the door, it happened again. I grabbed my phone and began to tape the episode. She seemed to stop breathing for an age and when she did begin to take a few shallow breaths they were rattled and laboured; her body began to stiffen with jerky arms and legs and a clenched jaw; it was so frightening.
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Georgie was in hospital for three nights. She had lots of tests and they all came back normal. When we were discharged there was no official diagnosis given, just that they were fairly certain they had ruled out epilepsy. Returning home, I decided to do some research and came across reflex anoxic seizures (RAS) on the STARS website. I cried with the relief! The next morning I was woken by a call from the hospital. They wanted me to come in and collect some epileptic anti-seizure medication for Georgie. It was with shaking fingers I made my first call to STARS. Jenni from STARS listened and advised me to question the prescription. When I got to the ward, I was met by a junior consultant, who handed me a prescription for anti-epileptic medication. When I raised the question Jenni advised, he just said “take the medication as we don’t want her to continue having seizures.”
“When I raised the question Jenni advised, he just said “take the medication as we don’t want her to continue having seizures.”
Not wanting to argue, I smiled, thanked him, and went home to immediately call Jenni again, who sent us the STARS Blackout Checklist to share with our GP and signposted us to a paediatric cardiologist at Southampton Hospital, who had a special interest in RAS. The paediatric cardiologist was wonderful, and, after thorough checks and note taking, he agreed it was likely Georgie had RAS. He used a memo device to record Georgie’s heart rhythm over ten days. The results of the memo confirmed Georgie’s diagnosis of RAS. Georgie’s attacks have now settled into some kind of pattern and we are now in the process of putting a care plan into place for Georgie’s nursery. I really cannot thank Jenni enough for all her kind words and support, without her and STARS I dread to think where we might be now! Holly Robson, Dorset
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In the end, it will be alright Showers and stairs, food and dance see me faint I try keeping chirpy but funny it ain’t! ‘Are you sure it’s not drugs, pregnancy or stress?’ ‘No Doctor, I’ve been checked for it all, more or less’ Oh the doctors, professors and consultants galore With hospital stays just to make sure! Psyched to ensure it was not all in my head Then the great Prof. Mathias saw me and said, ‘You have PoTS, Vasovagal and EDS three’ Sheer relief to know what was wrong with me!
17-year-old Ella Landsman, shares her experience of managing PoTS through poetry. Where you run I shall walk and feel my heart beating Faster and faster till my mind starts reeling With one glimpse I’ll flush white with heavy breathing And regret all those times I cancelled our meeting I’ll be right here waiting, stars clouding my view I’ll feel dizzy and dazed, with fingers blue A romantic poem you think, oh you’re so wrong But an ode to the world in which I belong Not a world of romance - but a tale of PoTS I would expand and explain but I’ve lost the plot With the memory of a fish, this happens a lot Once upon a time. Oh wait… I forgot Walking with friends in the cold winter’s air I have my shorts on, with a bun in my hair No thick jumpers for me, the hot flushes take care A good few years early, I need to rest in my chair. Lying in bed, heart mimicking a jackhammer With plane socks on that hardly resemble glamour!
Now rattling with pills, and drowning in water I down the salt when I feel myself falter But when I’m up and dressed and set to impress That lethal lethargy is hard to repress. I walk down the streets and my ankles get sore Oh that sinking feeling as I faint to the floor, Pins and needles and limbs that won’t work Around every corner this PoTS does Lurk Some days are so good I try to forget, The pain and the aches and the cold night sweat, I shop and I dance and I swim with my friends, Until once again the darkness descends! And I’m back again in my own little place Where to raise out of bed will make my heart race But I’m learning to listen and respect the new me For there’s still so much out there to do and to see The time has come for me to say good night It’s now 4 am and my chest feels tight At this ghostly hour there can be fear and fright, But in the end, it shall be alright. Ella Landsman, London
Join us at STARS Patients’ Day 2013 Sunday 20th October 2013, The ICC, Birmingham A day for patients and carers to learn from syncope, RAS and PoTS specialists, share information and meet other STARS members. To register your interest and reserve your place, email Jenni Cozon jenni@stars.org.uk or phone 01789 450 564
NEWS ALERT! Dr Blair Grubb, Professor of Medicine and Paediatrics, University of Toledo, is confirmed to speak at this year’s Patients’ Day! Don’t miss out on your opportunity to meet a world renowned expert on autonomic disorders, including PoTS.
STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD
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