STARS Winter 2018 newsletter

Take

to Heart

Issue No: 47 Winter 2018-19

www.stars-international.org

Take Fainting to Heart - there is no such thing as a simple faint

FIND OUT WH Y JANE WON VOLUNTEER OF TH E YE AR

Working together with individuals, families and medical professionals to offer support and information on syncope and reflex anoxic seizures

STARS, Unit 6B, Essex House, Cromwell Business Park, Chipping XXX Norton, Oxfordshire, OX7 5SR SWALLOW SYNCOPE +44 (0) 1789 867 503 @ info@stars-international.org www.stars-international.org

UK Registered Charity No: 1084898 STARS ©2018

2

STARS Patients Day

For the first time, STARS Patients Day 2018 saw two separate meetings - one dedicated to RAS and syncope, the other to PoTS. International speakers, including Dr Blair Grubb, Dr Robert Sheldon and Dr Satish Raj flew in from America and Canada to share their knowledge and expertise with STARS members.

Patient favourites, Professors Richard Sutton, Rose-Anne Kenny and Dr Karen McLeod, also joined us from Monaco, Dublin and Scotland respectively. Even our American colleagues travelled here to help the day run smoothly.

As always, the topics were carefully chosen with the needs of STARS patients in mind.

In the PoTS room, the importance of planned exercise and good nutrition was discussed

by Dr Nicholas Gall and arrhythmia nurse specialist Helen Eftekhari respectively.

Updates on current research fell to Dr Satish Raj to explain and treatment options were explored with Dr P Boon Lim. Closing the day, Dr Blair Grubb shared his

knowledge on autoimmune causes of PoTS. Syncope delegates were treated to a presentation from Dr Karen McLeod, eminent Paediatric Cardiologist from the Royal Hospital for Children in Glasgow, discussing syncope in the young (RAS).

Syncope in the elderly is not always taken seriously but Prof Rose-Anne Kenny addressed this and highlighted the link between falls and faints.

There was an open discussion between each session with many of the doctors embracing the opportunity to speak individually to some patients, providing reassurance on the conditions generally.

The initiative of designated meetings for syncope and PoTS has been praised by medical professionals and patients alike.

This is reflected in the substantial increase in the numbers of delegates attending – 110 patients and their carers joined 16 international PoTS and syncope specialists.

www.stars-international.org • info@stars-international.org

3 It was a superb day for everyone who supported this annual event and we hope even more STARS patients and carers will make the journey to meet us and fellow members in 2019.

Following the success of 2018, STARS Patients Day 2019 will follow the same format with two separate meetings, to ensure you hear about topics relevant to your condition.

STARS Patients Day 2019 will be held on Sunday 6th October. at The ICC, Birmingham, UK Registration is now open!

Visit www.stars.org.uk or call us on +44 (0) 1789 867503 to secure your place

Award Winners at Arrhythmia Alliance Heart Rhythm Congress 2018 Dr Anderson developed the EP service from scratch in Swansea. Mark has developed the Arrhythmia service consistently and tirelessly over the last 20 years. This approach has been underpinned by a commitment to training and inclusivity of his medical colleagues and equity of access for the services patients (Image shows Dr Mitchell accepting his award).

Outstanding Individual who has Contributed to Arrhythmia Services Award was presented to Dr Andrew Mitchell and Dr Mark Anderson. Dr Mitchell single-handedly manages a complex and demanding cardiac service in Jersey, and over the last 10 years has transformed arrhythmia management on the island and has facilitated many services to be offered locally, preventing costly off-island referrals.

Team of the Year Award was awarded to The Friarage Hospital, Northallerton Cardiac Rhythm Management Team Service.

The Friarage Hospital (FHN) is the smallest acute DGH in England providing health care

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4 for more than 120,000 people in rural North Yorkshire. The cardiology department is a fully integrated unit comprising cardiac investigation unit, outpatient and administration facilities.

The team has expanded to include 2 FHN based cardiologists, cardiac physiologists, specialist nurses (SpN), administrative staff and support workers providing a high-quality service, responsive to patients’ needs, close to home.

Since 2013, they have incrementally introduced key CRM service improvements in: Rapid Access Arrhythmia Service, Complex Device Patient Repatriation and Remote Patient Monitoring (RPM) Clinics and many more.

Volunteer of the Year Award was presented to Jane Bateson of Scotland for her remarkable contribution to STARS. After being diagnosed with PoTS herself, Jane has gone to great lengths to raise awareness of heart rhythm disorders. She spends all of her free time running a book swap at her local co-op, and the money raised through this is donated regularly to STARS. So far, Jane has raised over £2000. Not only does she tirelessly fundraise

for STARS, but she also works very hard to raise awareness through her local media and newspapers. Jane was responsible for her MP, Douglas Ross, attending the World Heart Rhythm Week event at parliament, and for him being involved with STARS too. All of Jane’s spare time is devoted to STARS, raising awareness and fundraising, and she deserves to win the award for volunteer of the year!

To read more about Jane’s voluntary work for STARS, turn to page 16.

Lifetime Achievement Award was presented to Professor Robert Sheldon, cardiac arrhythmia specialist and Professor of Cardiac Sciences, Medicine and Medical Genetics at the University of Calgary, Canada and a Fellow of the Heart Rhythm Society.

2018 was STARS 25th Anniversary year and for most of those years STARS has been very privileged to benefit from Professor Sheldon’s knowledge and appreciation of vasovagal syncope. Every year, he flies over to attend Heart Rhythm Conference.

He supports STARS Patients Days, contributing to the agenda, introducing new international speakers for us and presenting for STARS patients, who are always thirsty to hear about new research and his (on occasion) controversial thoughts!

To nominate a healthcare professional or volunteer in your area, please contact Rachel for further details at r.harris@heartrhythmalliance.org

www.stars-international.org • info@stars-international.org

5

Ask the Experts

Stokes Adams Syndrome We recently received an Ask the Experts question on Stokes Adams Syndrome, a term that is sometimes used by non-specialist doctors but rarely by cardiologists/electrophysiologists. A simple description of a Stokes Adams attack is a collapse without warning associated with a brief loss of consciousness (seconds rather than minutes) due to transient asystole (heart stops beating) or a slow heart rate.

Normally this condition is very easily treated by implanting a pacemaker and the patient should have no further episodes. In a frail elderly patient, a pacemaker is often fitted immediately before confirmation and proof of diagnosis to avoid any further syncopal attacks that could provoke more serious injury such as fracture of the hip.

It is more common in the elderly and can occur in any posture. The cause is more likely to be either sinus node disease or heart block (an abnormally slow heart rate) rather than neurally mediated syncope (NMS) or postural or orthostatic hypotension.

Eye drop Medication Alert Did you know that some eye drop medications are also beta blockers? Beta blockers can lower blood pressure which in turn may cause fainting and bradycardia (a slow heart rate). If you have very low blood pressure or are on medication for high blood pressure, then certain eye drop medication may not be suitable for you. Don’t forget to discuss with your GP if this could be relevant.

RAFFLE TICKETS If you are in the UK, you will have found a book of raffle tickets with this newsletter. To be in with a chance of winning some incredible prizes, including a Marks and Spencer voucher, tickets to London attractions, plus many more, please ensure the stubs and payments are returned by Friday 12th April 2019 to Unit 6B, Essex House, Cromwell Business Park, Chipping Norton, OX7 5SR. To order more ticket books, please email r.harris@heartrhythmalliance.org or call +44 (0) 1789 867503.

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6

STARS at Westminster!

As well as Professor Stephenson, Dr Robert Sheldon flew over from Canada to congratulate us on 25 years.

Professor Christopher Mathias, Professor of Neurovascular Medicine, gave a presentation on the impact of STARS over the years.

Wednesday 6th June 2018 was an extremely special day for STARS, as it marked our 25th Anniversary!

To celebrate, STARS Founder and CEO, Trudie Lobban MBE, hosted a wonderful event in the Terrace Pavilion on the banks of the River Thames, at the House of Commons, Westminster. The day saw a gathering of medical professionals, members of parliament, trustees, staff, supporters of the charity, and patients from the past and present to celebrate the remarkable work that STARS has done over the last 25 years!

“One in two people will faint at some point in their life.

Our message is that no faint is a simple faint” We heard from Professor John Stephenson, Emeritus Consultant Paediatric Neurologist from Glasgow; the man who originally suggested to Trudie that she set up a support group, advising she would only get a few calls!

We also heard from Mr Mike Gapes, MP and the Chair of the All Party Parliamentary Group of Arrhythmias (APPG-A), and Ms Alexandra Whitman, a patient who now runs her own business, has three children, and has been a university lecturer.

Douglas Ross, MP for Forres, Scotland (our “Volunteer of the Year” Award winner’s local MP) attended the event and had a chat with Jenni.

This celebration was also in collaboration with Arrhythmia Alliance World Heart Rhythm Week (WHRW). In 2018, World Heart Rhythm Week was even bigger and better than ever before, with a special focus to ‘Take Fainting to Heart’.

One in two people will faint at some point in their life. Our message is that no faint is a simple faint, and should always be investigated, as it may be the only sign of a serious and life-threatening arrhythmia.

www.stars-international.org • info@stars-international.org

7 The number one killer in the western world is sudden cardiac death, and often the only symptom is fainting.

“Across the pond, our USA team held different know your pulse events in a different location everyday of WHRW” The week consisted of hospitals, doctors’ surgeries, support groups and patient groups around the world holding know your pulse events in support of WHRW, with the mission of raising the awareness of arrhythmias. Tens of thousands of pulse checks were taken in over 30 countries all over the world, making millions of people pulse rhythm aware.

Across the pond, our USA team held Know Your Pulse events in a different location every day of WHRW (even including one at the beach!). As well as this, our team held CPR and AED awareness events, workshops, and spread our message ‘Take Fainting to Heart’ across America.

During the event, Trudie presented a certificate to Saskia, our 2018 STARS London Marathon runner to thank her for raising a whopping £5,579!

Next to Saskia, you can see Professor Christopher Mathias, who treated her when she was initially diagnosed with PoTS and syncope in her teens!

You can read an interview with Saskia on page 17.

Our USA team visited the Children’s Center on Hilton Head Island, South Carolina, to raise awareness and provide basic education to the summer camp students on AEDs, and the importance and purpose of knowing your heart rhythm.

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8

I Have Never Let RAS Stop Me Doing Anything “When I was younger my doctor used me as a source of medical research for a study on Reflex Anoxic Seizures.”

Even though I cannot remember a time when I did not have my seizures, I still tried to live my life to the fullest. I was always willing to be the first up a tree or be the first to try something new. From a young age, I knew there would be times when RAS got the better of me, but I never let it stop me enjoying life. RAS is part of me and I was willing to accept that.

I have had RAS since I was a baby.

When I was six months old I experienced my first seizure.

I was playing with my older sister and when my mum turned around to look at us I was unconscious. Even though she had previously been a nurse, she was very upset, and I woke up 30-40 seconds later with my mother lying beside me. I have been experiencing RAS ever since.

I was lucky with my diagnosis as the doctor who saw me said he was positive that it was RAS. I spent many years going to appointments, taking medicine I can no longer remember the name of (!!) and seeing a doctor who was super supportive.

The worst episode I had was when I was nine years old. I had felt extremely unwell late one night and asked my Dad to come downstairs with me to get me some medicine. My Dad was grabbing the bottle for me when he heard a massive thud behind him. I had gone into a seizure and had managed to get my head caught between the table and the washing machine. This seizure lasted 1 minute 30 seconds, the longest episode I have ever had. Following this seizure, I went to my doctor and he referred me to the hospital.

“I had gone into a seizure and had managed to get my head caught between the table and the washing machine.”

I had some tests at the hospital as the doctors were unsure if I had developed epilepsy.

I was told I did not have epilepsy and that it was still RAS attacks that I had experienced.

www.stars-international.org • info@stars-international.org

9 A doctor then told me and my mother about possible treatments. The main treatment he explained to me was a pacemaker. I was only nine years old so we decided against it as there was a chance I could grow out of them.

“My seizures have actually helped me in a way as they have inspired me to believe in myself”

My seizures have actually helped me in a way as they have inspired me to believe in myself and helped me decide that I really wanted to pursue a career of nursing for children.

My family and I have always tried to raise awareness of RAS. I have also always found comfort through the STARS website and my Dad ran a marathon when I was younger raising money for STARS.

I have never let RAS stop me from doing anything, even when I was experiencing episodes more regularly from the age of 12 to about 15 years old due to my periods.

Niamh Oxfordshire

Does Your Child’s School Have an Exit Card Policy?

An Exit Card is produced by the school and recognised by the teaching staff. This allows the holder to leave a class at any time should he or she feel in a stressful situation.

Pupils who have struggled with fainting at school found that their stress and anxiety was alleviated by the knowledge that they were free to exit the room should they feel faint.

These exit cards may not be approved by every secondary school but any parent whose child is experiencing frequent fainting should perhaps consider discussing this method of support with the headteacher.

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Just the size of a small credit card, the STARS alert card provides key information for new carers, work colleagues, family friends, schools and the general public.

Order your alert cards online

www.heartrhythmalliance.org/stars/uk/shop-online

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16/07/2018 Syncope - ALE

Our popular STARS syncope and RAS alert cards are available in packs of 20 for £2.65 including postage.

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10

Fancy a Day in My Shoes?

My name is Laura, I am a 32-year-old education solicitor, married to Wayne and have a little dog called Tilly. Life is busy and doesn’t show any signs of slowing. I was diagnosed with neuro-cardiogenic syncope in 2007, after suffering a number of ‘blackouts’ during my time at university in Leicester while I was studying Law. Following a raft of tests and a cardiology referral, we finally got to the bottom of what was going on. My blood pressure is a bit on the low side, so the blood pools in my legs and doesn’t pump itself back up to my brain in time to remind it I am still standing up… and then the blood pressure drops causing a blackout. To top it off, it turns out my heart runs a little slow. I take so much medication, I am sure I rattle when I walk and we (the royal ‘we’ of me and my medical team) try and manage the condition as best we can.

We have tried various medication regimes including maximal doses of midodrine and the steroid fludrocortisone. We still haven’t quite cracked it 10 years on. Not for want of trying, believe me!

My condition fluctuates and is fairly well managed. However, if I am run down or pick up a virus my body cannot cope with two things and it is my blood pressure that takes a hit. When a bad cluster strikes, it is debilitating but you just ride it out as best you can. I do a lot of self-management; drinking litres of water, adding salt to my diet, strengthening my legs, wearing compression stockings…all the glamour! These tweaks are key to keeping me safe.

“It is not an easy condition to live with but with the right support pretty much anything is possible!”

It is not an easy condition to live with but with the right support pretty much anything is possible!

I have collapsed in most places.

You name it I have probably collapsed there…including while carrying a tray of two dozen eggs – don’t ask. It can be scary and disorientating and I have received some very unkind comments from the public. I have had many injuries, some very serious (think neck collar and wheelie walking frame) and some more trivial. It isn’t easy when your body won’t do what it is supposed to. I am classed at the more severe end of the spectrum and it is frustrating when you find yourself stuck in hospital as an emergency admission when you had hoped to be doing something significantly more exciting!

www.stars-international.org • info@stars-international.org

11 I am a solicitor, not an easy job at the best of times, but when you aren’t sure whether you will make it through the day without blacking out it can add a little extra ‘edge’.

I am very lucky my employer has always been supportive of me. We have had to make concessions, but it has worked for me, the team and the firm, and that is what matters.

People have often asked (normally when I am laying on the floor post-collapse…) how I work with this condition but it is part of me now and I think that is what drives me.

“People do not always understand how your life can be impacted by what appears to be a benign condition.”

The doctors appreciate what I want out of life and my determination (read: stubborn) so they give me options and let me try new things to see how we (that royal ‘we’ again)

get on. It can feel like trial and error but I will try anything if there is a chance it’ll help.

Don’t get me wrong there are days when I can have an epic flare-up and want to stay in bed (its much safer and softer!) but I can’t and I don’t. It can knock your confidence but it has given me a different outlook which isn’t necessarily a bad thing.

It is not an easy condition to live with and people do not always understand how your life can be impacted by what appears to be a benign condition. However, when you have just caused a scene in the village post office, collapsing, taking out a rack of cards and it’s pension day, I think you are allowed a wry smile and a ‘fancy a day in my shoes?’ quip.

However, you aren’t alone and there is support out there, just keep going and live your life… maybe just wear a bit of padding?!

Laura Nottinghamshire

Help Us To Help Others People often feel that they are the only person in the world with a condition when they are first diagnosed. Reading other people’s experiences can really help!

Whether it's RAS, syncope, PoTS or you are still seeking a diagnosis, please email the UK team at info@stars.org.uk or the USA team at info@stars-us.org

STARS Education booklet provides you with the information and support with which you can plan and then action a whole school strategy on the care and management of a child with syncope/RAS – you can request a copy by calling +44 (0) 1789 867503 or emailing info@stars.org.uk

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12

Needle Phobia Many individuals will have heard the scenario of a doctor saying to a patient “I need to take some blood”, and the patient making an excuse, leaving, and not returning!

Few of us enjoy having blood taken or having injections but if you have a needle phobia the fleeting discomfort of a vaccination pales into insignificance. A needle phobia is when the fears people have start to interfere with an individual’s life, for some to detrimental effect. They may avoid medical treatment and any situation that could increase their chance of having an injection, for example visiting the dentist!

Many of us with a needle phobia can feel dizzy and faint at the mention of a needle or similar medical situations. A fainting response in people with a fear of blood or needles is unique to this phobia.

Many clinicians can be fairly dismissive when a patient faints at the sight of a needle, but this phobia can affect a range of medical procedures that involve needles and consequently, a broad range of medical conditions and diagnoses. An example of this can be the annual cholesterol screening and regular diabetes checks. There are those who work on the land who may be overdue for a tetanus vaccination or those with wisdom teeth causing intermittent discomfort.

Any individual who is seriously affected by needle phobia should discuss with their doctor. There is cognitive behavioural therapy* to help overcome this fear, particularly if it is impacting on one’s general health.

We should not be ashamed of a needle phobia, or embarrassed when we faint, but be encouraged to find the help we need no matter how long it may take. As we at STARS always say, there is no such thing as a simple faint and for patients with a needle phobia it is the knock on effect on tests and treatment for potentially serious conditions that must be considered. *STARS booklet, Cognitive behavioural therapy for chronic health conditions is available to download www.stars.org.uk or paper copy available on request

www.stars-international.org • info@stars-international.org

13 Social Media You can always connect with us and other patients through various forms of social media. For instant updates and extra information, follow us:

UK

Facebook: @blackoutstrust Twitter: @blackoutstrust

USA

Facebook: @syncopetrustUS Twitter: @SyncopeTrust_US

You can also connect with us on Health Unlocked: www.healthunlocked.com/stars

STARS Patients Day 2019 Following the huge success of last year's Patients Day, STARS will once again be hosting individual PoTS, syncope and RAS meetings.

Specialist speakers include Professor Richard Sutton, Professor Blair Grubb and Professor Robert Sheldon who will be speaking on subjects such as sleep, nutrition and exercise for PoTS, the role of the pacemaker in syncope patients and managing your syncope symptoms.

Still need more reasons to come to Patients Day? Here is what some people had to say about it last year:



'I so appreciated the expert knowledge of the speakers'

'The opportunity to ask questions in open discussions provided me with so many answers'



'So refreshing to meet doctors who talked on the same level as the audience'

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14

Fundraising Champions

Cy and his cycling club friends raised a whopping £800 for STARS by completing the Alsace cycle challenge!

A huge thank you to Catherine, PoTS patient and her employers at Alsters Kelley Solicitors. They have kindly donated £5,570 to STARS. Here we see Catherine presenting Trudie with the cheque.

Maria’s son was diagnosed with RAS in 2017, and so she wanted to do something to thank STARS for the information we provided at the time, so she ran the Llanelli Half Marathon last year, and raised a fantastic £342.

A huge thank you for SMT GB (Service Machinery Trucks Great Britain) for their generous donation of £150 as suggested by a staff member (unnamed).

If your employers make regular charity donations, please consider putting STARS forward. These donations are always a wonderful surprise!

PoTS patient, Natalie decided to arrange a charity football match together with her friend Suzie. They chose to split donations between STARS and Diabetes UK. They suffered a very wet August Bank Holiday, but everyone played with a smile on their faces, and raised over £400 for each charity! www.stars-international.org • info@stars-international.org

15

Thank you to Bradley, our long-term supporter/baker extraordinaire! Bradley emailed us recently with information on his latest fundraising efforts: “Our House Warming Party became an opportunity to have a small bake sale and try out our new oven, ready for future bake sales. I made my chocolate chip cookies, using my favourite recipe I used for the Christmas treats (adding orange zest and cinnamon). Selling them for 50p each I soon managed to raise £75 for STARS. Thank you STARS for everything!

A tasty fundraiser everyone should try!”

Recipe: 250g all-purpose flour 2g baking soda 170g unsalted butter, melted 220g packed brown sugar 100g white sugar 15ml vanilla extract 1 egg 1 egg yolk 335g chocolate chips orange zest 1-2 teaspoons of cinnamon.

Pinch of salt

•1 Preheat the oven to 325 degrees F (165 degrees C). Grease cookie sheets or line with parchment paper.

• Pour 1/4 of the cookie dough at a time 4

•2 Sift the flour and baking soda into a bowl, then add the salt and set aside.

• Bake for 15 to 17 minutes in the 5

•3 In a bowl, mix together the melted butter, brown sugar and white sugar thoroughly.

Beat in the vanilla, egg, and egg yolk until light and creamy. Then mix in the reserved sifted ingredients. Stir in the chocolate chips, orange zest and cinnamon by hand or using a wooden spoon.

onto the prepared greased sheets.

The cookies should be about 3 inches apart.

preheated oven, or until the edges are lightly toasted. Cool on baking sheets for a few minutes before transferring to wire racks to cool completely.

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16

Jane’s Book Swap She was so reassuring, told me there were treatments, medications, and most of all, always hope at the end of the day. She will never know how much that phone call meant to me, the fact someone actually understood what I was going through was at the time a miracle!

I find it hard to believe it’s only a year since I set up the book exchange in my local Co-Operative on Forres High St. I had the idea when the old lady who used to do the exchange for Guide Dogs for the Blind sadly died. People kept saying how much they missed the books. I just thought this was something I could do for a charity who had helped me through some very dark times.

It must be about 12 years ago I came across STARS. To be honest I found them quite by default. Googling my condition I soon discovered I was by no means the only person who had frequent blackouts, like me they had trouble getting a diagnosis often being told it was a psychological problem. I was having a very difficult time both mentally and physically. I could no longer drive or ride my horses. My job was in catering but no more could I stand and work in hot kitchens. All these things I loved, they were my life.

It was Christmas time but there were no parties for me. I had another look at the STARS website and noticed a phone number.

I was sceptical that anyone would answer during the festive season, how wrong I was.

A lovely lady called Trudie Lobban answered.

“Over the next few years battling to get medical help I rang the charity for reassurance on lots of occasions, often in tears.”

Finally, feeling pretty desperate I decided to go to my MP, then MSP, Douglas Ross, to explain to him the lack of help for Scottish patients to access help on the NHS south of the border. I know he contacted STARS. He brought up the problem in Scottish Parliament. He also contacted my health board. About six weeks later I got a letter from them suggesting the drug Pyridostigmine. For me that has been a life changer. I got my driving licence back after a gap of nine years, I had some energy back and being able to go out without a wheelchair is amazing.

Mr Ross met up with STARS at an event they hosted at Westminster back in June. He took time talking to both the consultants and charity ladies. From them, he learned how many patients in Scotland are still having problems getting funding. Very slowly, we are making progress in getting help, it’s hard work but we will get there.

When I think how little seemed to be known about dysautonomia when I first rang STARS, things are definitely going in the right direction.

www.stars-international.org • info@stars-international.org

17 “I have a large selection of the charity’s leaflets on display.”

Because of the support I have had from STARS starting with that very first phone call, I decided to raise money for the charity.

Not only do I have the books I also have CDs DVDs, magazines etc. My aim was to raise a thousand pounds by Christmas 2018, and I’m pleased, if not a bit astonished, to say I reached that target by July - five months early! I have been donated about 3000 books

by an elderly man who read my story in a local paper! I now can’t get into my spare bedroom for books and more are coming.

It’s not only the books that are popular, I have a large selection of the charity’s leaflets on display, these are very much appreciated by all ages of people coming through the shop.

Thank you STARS for all you do, this is my way of thanking you for all your support over the years.

Jane Scotland

Saskia’s Marathon!

26 year old Saskia has PoTS and Vasovagal Syncope, but that didn’t stop her from running the 2018 Virgin Money London Marathon to raise funds for STARS completing the 26.2 miles in just 5 hours 36 minutes.

Saskia’s Virgin Money Giving page has raised over £5,300! What a fantastic achievement!

Here, Saskia answers our questions and gives a brief rundown post marathon.

How did you feel after the run?

After the run I felt a wave of relief and then started to cry. When I found my mum I could see the relief in her eyes as she had been so terrified of receiving a call, that she was all too used to, in which she would hear that I was unconscious somewhere along the course. I realised when I saw her just how much worry I had put her through and also how proud I was that on the day that I had

“I will always choose to support STARS. When I felt lost and alone with misdiagnosis and confusing medical terms the ability to have a charity like STARS that gave me some clarity and understanding.”

USA +ͷ (;ͺ͹) ͺͷͻ ͷ;;ͼ / UK +ͺͺ (Ͷ)ͷͽ;Ϳ ;ͼͽͻͶ͹

18 managed to be stronger than before and achieve a goal I never dreamed would be achievable. Also, I was really happy because all I wanted was a flapjack and proceeded to find my best friend who had made a whole box of them! So flapjacks kept the legs moving at the end!

“For all supporters who were there on the day or donated to the charity, I am endlessly grateful” Why did you choose to run for STARS? I will always choose to support STARS. When I felt lost and alone, with misdiagnosis and confusing medical terms, the ability to have a charity like STARS, that gave me some clarity and understanding in a difficult time, was essential in making me accept a chronic condition. I want anyone else who is in my position to not have to struggle alone with coping and I believe STARS can help that.

Supporting charities is incredibly important, but supporting one that you know influenced your ability to be happy and healthy is essential.

What advice would you give to anyone with your condition who wants to take up running?

During the marathon I found my condition and the symptoms of my condition were very challenging. It wasn’t a comfortable run and especially with the heat, so firstly anyone with the condition should be aware that a marathon is a difficult undertaking and you have to be incredibly controlled and sensible.

However, I would say that the training process and building up distance and time slowly over the weeks was a great joy and also I really felt like I was training my body to get used to the continuous exercise.

One trick I found helpful was to drink a big bottle of water and electrolytes the night before a run, I found this was a helpful trick to keeping the blood pressure steady when you first start running and it meant you could balance yourself a bit smoother. I also learnt that if you are feeling “off ” before a schedule run then you have to listen to your body.

If symptoms were showing I would ask my boyfriend nicely and make him come with me for a quick walk or even a slow one if I really wasn’t well. This was just to keep myself mentally going so I knew I could at least walk the distance if necessary!

Do you have any messages for your supporters?

For all supporters who were there on the day or donated to the charity, I am endlessly grateful. With the heat on the day there were a couple of times where I thought I was crazy and stupid for even attempting to run a marathon, but then I would see someone cheering me on or think of every single person who had donated and it would push me to the next mile. I learnt quickly to lie to myself and say I only had to run 1 more mile (about 25 times over!)

Thank you, Saskia for such a wonderful effort in not only raising much needed funds for STARS, but for pushing yourself and proving that your condition has not stopped you from achieving your goals! You have inspired so many!

www.stars-international.org • info@stars-international.org

19

New to the Team Steve

Anna

Hello, I’m Anna and I am the UK Projects Manager. My job at the charity involves organising both of our annual awareness weeks – Arrhythmia Alliance World Heart Rhythm Week in June and AF Association Global AF Aware Week in November as well as our flagship event, Heart Rhythm Congress, and other events for clinicians.

Outside of work, I enjoy spending my spare time with my husband and two sons which generally involves listening to their bands or standing on the football touchline!

I really enjoy working for the charity – we achieve some amazing things in our small but lovely team!

Hello! My name is Stephen and I joined the UK Events Team towards the end of November 2017.

I have always enjoyed organising and running events and when the opportunity arose to develop my skills at this amazing charity I couldn’t have applied any sooner. I love being able to put together events for Healthcare Professionals and Patients which help to save lives, this drives me to succeed every day!

I’m a football fanatic, a proud Chelsea FC supporter. I also love golf and squash and ticked the London Marathon of my bucket list last year with a time of 4 hours and 25 minutes.

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20 Clare

Sharonica

Hello! My name is Clare and I joined the charity in August 2018 as Program and Events coordinator. This is a new position for me but I am ready for the challenges and have already found it to be an interesting and incredibly enjoyable role! I love being a part of the amazing work that Arrhythmia Alliance does.

Hello everyone, I’m Sharonica! My journey with the US team began in Jan 2018 as a senior intern, volunteering three days a week with the charity. At the completion of my internship I was offered a full-time position as the Patient Services Coordinator and due to the mission and values of this organization I could not turn down the offer.

I am originally from South Yorkshire in England and I graduated in 2015 from Sheffield Hallam University with my master’s degree in Graphic Design.

I moved to the US two years ago to marry my husband, who I met at Walt Disney World, FL.

I am a recent graduate with a degree in Public Health and a proud mother of a beautiful 8-year-old girl, Domonique. I’m a firm believer in Jesus Christ and trust that all things happen for a reason. In my first few months I have had the ability to witness the benefits this organization provides and above all I enjoy my work as a caring face for the charity and providing support. Happy to be a part of this amazing team! I am looking forward to my second international visit to the UK office in October this year when I am due to attend HRC 2019.

No surprise, I LOVE all things Disney and loyal to my British roots I drink way too much tea. I am a firm believer that everything happens for a reason and that life should be lived one adventure at a time.

Our Help Line is Here for You We are not just a faceless call centre with scripted answers.

We will do our utmost to provide the information most suited to YOU. And if we do not know the answers, we will ask a team of professionals!

Please call +44 (0) 1789 867503 to speak to a member of the UK staff, or + 1 (843) 415 1886 to speak to our USA team www.stars-international.org • info@stars-international.org

21

Listen to Your Body and Know Your Capabilities I am 70 years old and struggle with vasovagal pre-syncope.

I don’t actually faint, but go to the stage before when you feel, hot, clammy, light-headed and have to sit down or would fall down.

I first heard about the vagus nerve some years ago when I ended up in hospital after collapsing at home following continued vomiting. A neurologist confirmed it was the vagus nerve causing the problem and responsible for previous incidents, one of which after I became dehydrated following a long-haul flight. These had been my only episodes linked to vasovagal pre-syncope until about a year ago.

“A neurologist confirmed it was the vagus nerve causing the problem and responsible for previous incidents” It was a stressful year! The previous year we had moved away from friends and family (whom I didn’t realise how much I would miss). An old friend in our village died under terrible circumstances and, with his widow going through an understandably stressful time, we were supporting her. I then experienced two episodes of vasovagal presyncope, which I later put down to heat and that same year, whilst on holiday in Turkey, I became extremely ill and we flew home early.

Arriving home, I saw our GP and collapsed in the surgery. She could find nothing wrong with me but, after a couple of days, I hadn’t

improved and saw the out-of-hours doctor, again collapsing. He thought I had a heart problem as my pulse was high and sent me to A & E, but upon arrival my blood pressure and heart rate had returned to ‘normal’ so I was sent home. My GP said she would refer me to the syncope clinic at the local hospital.

“I was reaching the stage where I did not want to venture out for fear of collapsing and was reluctant to socialise.”

I was reaching the stage where I did not want to venture out for fear of collapsing and was reluctant to socialise. However, with the guidance of the syncope clinic, I began to recognise and understand triggers and how to deal with them. I soon learned that hunger could bring on an attack. I could not stand

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22 for more than ten minutes but exercises have helped retrain my brain and I am improving.

By attending the clinic, I have been educated on how to deal with this condition.

“You have to listen to your body and once you know your capabilities, you learn to cope.”

It seems my main triggers for episodes of pre-syncope are hunger, tiredness, heat and stress. I was recently referred to a London syncope clinic because I wanted more help and support for my symptoms. A tilt table test confirmed the clinical judgement of previous clinicians. Whilst at the hospital,

characteristic triggers and management strategies of vasovagal syncope were discussed with me in detail, which led to a better understanding of my problem.

I was told I needed more salt in my diet, more hydration and compression tights might help. They discussed talking therapy such as mindfulness or cognitive behavioural therapy as a means of managing on-going symptoms and prevention. These will play a key role in improving my symptom profile.

You have to listen to your body and once you know your capabilities, you learn to cope.

Brenda Suffolk

Psychogenic Blackouts A psychogenic blackout is a medical term for a blackout that can look like reflex syncope or an epileptic seizure but is not related to either.

During a psychogenic blackout, people lose some control of their body.

Episodes may involve: • • • • • •

Passing out and falling to the floor.

Jerking movements of your arms or legs.

Losing control of your bladder or bowel.

Going blank or absent.

Feeling out of touch with your surroundings.

Not being able to remember the episode.

Some of these symptoms may lead people to confuse these episodes with other causes of blackouts such as reflex syncope or epilepsy.

Sometimes, the first episodes are related to upsetting or frightening experiences or some other great loss or change. These experiences may be recent or in the past. Stress can also make it difficult for a person to get over their episodes once they have started. Examples of this include relationship problems, ill health, bereavement and money worries, and even just the stress of living with psychogenic blackouts.

www.stars-international.org • info@stars-international.org

23 Even though stress may be an important part of this condition, this does not mean that you are “mad” or “crazy”. It also does not mean that the episodes are your fault, that the problem is “all in the mind” or that you are doing them “on purpose”.

about them, which can make it easier to explain what’s wrong.

There are many different symptoms that can occur in people with psychogenic blackouts.

Confusingly, many of these symptoms can be found in other conditions such as PoTS (Postural Tachycardia Syndrome) or depression.

These might include:

These symptoms include: Numbness Panic Tingling Anger Fatigue Frustration Pain Headache Speech problems Worry

Bladder problems Poor concentration Bowel problems Trouble sleeping Limb weakness or paralysis Dizziness Low mood Memory problems Blurred vision Feeling distant or “unreal”

How are they treated?

The first step is to understand the condition and why it is different from reflex syncope and PoTS. Psychogenic blackouts can stop altogether without any treatment or intervention. In some cases, treatment may help you to have fewer attacks and/or cope better with them. The best form of treatment is talking treatment.

Talking Therapy The most important treatment for psychogenic blackouts involves speaking with friends and family and sharing your emotions.

Telling people that you have a condition such as reflex syncope, PoTS or even panic attacks is difficult. However, many people have heard of these problems and know something

One common type of talking treatment is psychological therapy. Depending on the nature of the person and the problem, a number of things may be discussed during therapy.

• Understanding why these attacks are happening.

• Spotting triggers for attacks.

• Learning specific techniques to control and reduce the impact of attacks where possible.

• Identifying and exploring stresses or problems that are contributing to attacks and developing ways of relaxing and managing them.

• Coming to terms with events in the past that may be related to attacks.

• Viewing situations in more positive ways.

• Increasing activity levels.

Some people are reluctant to take up psychological therapy because they fear being thought of as unbalanced or disturbed.

However, research shows that psychological therapy can help people learn to cope with all kinds of illness, such as cancer, diabetes and heart disease. As stress is often an important part of psychogenic blackouts, psychological therapy is likely to be particularly useful for people with this condition.

Therapy or counselling can be a very positive experience. It’s a chance to talk things through and explore your own thoughts and feelings about things that matter to you.

For more information, email info@stars-international.org or call 01789 867503 if you are in the UK or +1 (843) 415-1886 if you are in the US to request a copy of our Psychogenic Blackouts booklet.

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STARS

will be supporting Arrhythmia Alliance World Heart Rhythm Week 3 – 9 June 2019

STARS members can become involved with raising awareness.

If you feel that you can join other STARS members in ensuring that this important message is not lost, then register for a resource pack at www.heartrhythmalliance.org Sharing our resources with your local health centre, workplace or community centre, holding a Know your Pulse event or fundraising all helps to pass the word around! Contact info@stars-international.org or call us on +44 (0) 1789 867503 for more information on any of these.

Help Us To Help Others!

We have received fantastic feedback from our patient stories, and we need more! Could you spare a few moments to share your journey to a successful diagnosis? Please email info@stars.org.uk if you are in the UK, or info@stars-us.org if you are in USA. If you are struggling to know what to write, you can call our UK team on +44 (0) 1789 867503 or our USA team on +1 (843) 415 1886 for help! You will be helping others who are still looking for a diagnosis for syncope or PoTS.