VASOVAGAL SYNCOPE (NEUROCARDIOGENIC SYNCOPE, REFLEX SYNCOPE)

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1 VASOVAGAL SYNCOPE (NEUROCARDIOGENIC SYNCOPE, REFLEX SYNCOPE) Working together with individuals, families and medical professionals to offer support and information on Syncope and Reflex Anoxic Seizures Registered Charity No

2 STARS STARS (Syncope Trust and Reflex Anoxic Seizures) was founded 15 years ago in England by Trudie Lobban after her daughter, Francesca, was diagnosed with Reflex Anoxic Seizures, a form of Syncope. Trudie was dismayed to find there was no support or information regarding her daughter s condition. Her pediatric neurologist suggested she start a support group for others who were experiencing the same frustrations. In her quest to support and educate others on Syncope, STARS was created. Because of the tremendous growth in demand for support and information from sufferers in the United States, STARS-US was established. Board of Trustees Trudie Lobban Founder and Chief Executive of STARS and STARS-US Rebecca Smith Executive Directior Linda Kadesch Hilton Head Island, SC J. Philip Saul, M.D. Division Director of the Children s Heart Center of South Carolina MUSC Children s Hospital, Charleston, SC Robert S. Sheldon, M.D. Professor of Medicine, Associate Dean of Clinical Research, Vice President Research Calgary Health Region University of Calgary, Canada Carlos A. Marillo, M.D., FRCPC, FACC Professor of Medicine, Director Arrhythmia Service, Cardiology Division, Director Syncope and Autonomic Disorder Unit McMaster, University-Population Health Research Institute Ontario, Canada BlairP. Grubb, M.D., FACC Professor of Medicine & Pediatrics, Director, Electrophysiology Services University of Toledo, Health Science Campus University of Toledo College of Medicine, Toledo, OH Daniel Beach Global Director of Communications, Medtronic Cardio Vascular Medtronic World Headquarters, Minneapolis, MN David Benditt, M.D., FACC, FHRS, FRCPC Co-Director, Cardiac Arrhythmia and Syncope Center University of Minnesota Department of Medicine, Minneapolis, MN

3 These are general guidelines and individuals should always discuss their condition with their own Doctor. Advice for Patients with Vasovagal Syncope (Neurocardiogenic Syncope, Reflex Syncope) SYNCOPE (pronounced sin-co-pee) is a medical term for a blackout or a common faint that is caused by a sudden lack of blood supply to the brain. This is very common, and occurs in roughly half of all individuals during their lives. There are many causes of Syncope, but the most common is Vasovagal Syncope, also known as Neuro-cardiogenic Syncope or Reflex Syncope. Fainting may be simple, with a typical warning, going pale with a gentle collapse to the ground, a brief period of unconsciousness, and a prompt recovery. However, fainting may also be complex. There may be no warning, there may be jerking of the limbs and even incontinence, (accidental wetting), and some people may take quite a while to come around. To a patient, it may be very traumatic, and can be triggered by having blood drawn, or seeing an accident on the street; you turn pale and may become sweaty or nauseous; sounds appear to come from a distance, the world goes dark, and you fall down, unconscious. Complex fainting may appear just like a seizure or fit. However, this can occur when there is a sudden fall in blood flow to the brain, it does not have to be due to epilepsy. Blackouts due to epilepsy occur when brain cells suddenly activate chaotically, but usually the blood flow remains normal. Furthermore, while Syncope affects 50% of people, epilepsy affects about 1%. It is very important to make sure that Syncope and epilepsy are distinguished from each other. A blackout is too often assumed to be due to epilepsy. Did You Know? Syncope affects a million-and-a-half Americans each year. Tragically, more than 40% are misdiagnosed or go undiagnosed. When someone suffers from Syncope, his or her life is turned upside down. The anxiety is overwhelming, but if diagnosed correctly, most can be simply and effectively treated.

4 VASOVAGAL SYNCOPE, either simple or complex, there is sudden triggering of a brain reflex. The nerves involved are part of the nervous system that behaves automatically. When we raise our arm or lift our leg, we do this voluntarily, but the automatic nervous system acts without our efforts. The correct name for this automatic behavior is an autonomic reflex. With Vasovagal Syncope, the heart rate slows down or may even stop for several seconds (bradycardia) and the blood pressure drops sharply (hypotension). This reflex mechanism is present in all of us, but in a more exaggerated form in some individuals. In effect, the reflex has shut down the body s blood circulation. When this happens insufficient oxygenated blood is pumped to the brain leading to dizziness and fainting. This odd reflex can be triggered by many different stimuli. Seeing blood is a common trigger but simply standing immobile may also trigger a Syncope attack. Fainting can also be triggered in situations that make people anxious, stressed or emotional. Being in a warm environment, not having eaten, not having drunk sufficient liquids, not taking enough salt in ones diet are all factors that increase the chances of setting the reflex in motion. STARS PATRON: Sir Roger Moore is world-renowned for his work as an actor and ambassador for UNICEF. He also is a patron of STARS. Roger suffered his first syncopal attack while performing on stage in New York. Since then, a pacemaker has improved his condition. I know from personal experience how frightening and worrying this can be. I am very happy to be associated with STARS, which is a charity that does vitally important work by raising awareness, providing support and aiding research for this condition. - Sir Roger Moore

5 What are the Symptoms? Symptoms can vary from patient to patient and from one faint to another. The most common symptoms are light-headedness, dizziness, and nausea. Accompanied with these symptoms may also be feelings of being hot, clammy or sweaty and sometimes experiences of visual and hearing disturbances. Often individuals become extremely pale looking. These symptoms are known a pre-syncope and may or may not be fol- lowed by a complete blackout. Some people get little to no warning of symptoms prior to loss of consciousness. A tendency to faint can run in families. What should you do? Vasovagal Syncope is NOT life-threatening and with certain measures and sometimes medication, if necessary, can usually be easily controlled. Fortunately, the problems tend to improve with time. However, there are two important concerns; some causes of Syncope are not benign, and can be very dangerous. These mostly occur in older patients, but some children and young people can have electrical abnormalities of the heart that should not be overlooked, and could be confused with Vasovagal Syncope if simple tests are not done. Some of the most important high risk electrical diseases of the heart can be diagnosed or suggested by a simple electrocardiogram, (ECG). If there is any doubt about Syncope being of the Reflex type, an ECG must be obtained. While Vasovagal Syncope is benign, it may cause complex fainting, and mimic epilepsy. A wrong diagnosis of epilepsy can be very damaging to a patient and their family. Unfortunately, a wrong diagnosis of epilepsy in Syncope is common. If there are doubts about the diagnosis, an opinion from an epilepsy specialist is essential. If this specialist believes the blackouts may be due to Syncope, especially if they suspect that the Syncope is not benign, encourage the neurologist to seek further help from a heart specialist. Preventing Episodes The following measures will help you prevent episodes.the moment you feel your usual symptoms coming on, take immediate action: Sit down immediately. If possible lie down flat.

6 Preferably, put your legs in the air, for example against a wall or propped up on pillows. Squat if you are unable to lie down. Clench and relax your calf-muscles, this will help to get the blood pumping around your body and increase your blood pressure to alleviate the symptoms. Don t try to fight your symptoms; you are not stronger than your blood pressure, and it will win. Acting quickly will help prevent the episode. The longer you go on with symptoms, without taking action, the more likely as episode will occur or the symptoms will increase in severity. Get up cautiously when you feel well again but if you have further symptoms, be prepared to sit down promptly. Slowly sit up and then gradually stand up. However, if symptoms continue or reoccur, lie down with your feet higher than the rest of your body. Repeat clenching and relaxing calf-muscles and sitting up again after a few minutes. If symptoms are mild or you are unable to sit or lie down, try wriggling your toes, squeezing something tightly or clenching your fists and calf-muscles. This will help to improve your circulation and your symptoms may subside. Longer Term Prevention of Episodes: Avoid prolonged standing, particularly in warm weather or hot environments Always sit down when you feel dizzy or light-headed. Try to keep cool and wear loose fitting clothing. Clench and unclench your calf-muscles or rock forward on the balls of your feet to encourage blood flow. Drink 1.5 to 2 liters of fluids in the first few hours of the morning. Strong tea or coffee may be helpful in keeping blood pressure up. (No more than 5 cups a day) Increase your salt intake (only after dis- cussion with your doctor, and never if treated for high blood pressure). Eat regular meals, including breakfast. Improve muscle tone in your legs with regular exercise, this helps to return blood to your heart. Wear high leg support tights during the day, but remove them before bed. Support tights prevent blood from pooling in your legs. Avoid excess alcohol, as this exaggerates symptoms. What can be done during an Episode? Friends and family should not attempt to sit you up. They should lie you down on your side (to aid breathing).

7 Make sure you are safe by removing any dangers such as hot drinks. Carry out simple first aid checks; airway, breathing and circulation. It is sometimes difficult to check your pulse (circulation) as low blood pressure can make it weak and therefore difficult to detect. If you do not regain consciousness within your normal recovery time, then you should be turned on your back with your legs raised. This will increase your blood pressure and improve blood flow to the brain. Recovery is normally quite quick, however you may feel disorientated, weak and tired for a little while afterwards. You may benefit from resting horizontally and then getting up slowly. If recovery is slow, or you feel different to how you usually feel after an attack, then you should seek medical assistance. Caitlin has seen Dr. Blair Grubb in Ohio. From a parent s perspective, he is a godsend. He listened really listened. Deb Blevins, North Carolina A SPORTING CHANCE Caitlin leads a full life with her family, friends, church, school and every sport imaginable, including soccer, league basketball and baseball. To keep up with her demanding schedule, Caitlin has been wearing her pacemaker since she was 4 years old to help deal with her condition. Other Names for Vasovagal Syncope: There are may terms used to describe a faint: Emotional Fainting Reflex Syncope Common Benign Fainting Neurocardiogenic Syncope (NCS) Neutrally Mediated Syncope Malignant Vasovagal Syncope A MOTHER S QUEST FOR A DIAGNOSIS When Isabelle was almost three years old, her mother, Anca Munteanu, noticed her daughter made a peculiar face that triggered sudden changes in her motor skills. Although her EEG turned out to be normal, doctors prescribed medication. Dissatisfied with a lack of a diagnosis, Anca began doing her own research, which led her to STARS. Since then, she found Isabelle the treatment she needed. Anca become an advocate of STARS and was able to provide Isabelle s school with informative literature on her daughter s condition.

8 I contacted STARS. Finally, someone understood what I was talking about and was able to confirm that there was something with similar symptoms that wasn t epilepsy. Anca Munteanu, New York Support: STARS is committed to improving the quality of life for individuals and their families coping with Syncope. The main focus is education and supporting sufferers, their families, the medical community and general public by offering a support system where they can obtain knowl- edge and understanding of these conditions. STARS offers: Information and reports Toll-free helpline Youth helpline Newsletters Monthly e-bulletins Timely information and a moderated message board Ask the Expert Regional, national and international meetings STARS is a registered 501c(3) non profit organization relying solely on contributions to continue its work throughout the United States. Membership & Donations: Your membership allows STARS to continue to offer their vitally important ser- vices. Memberships are a minimum of $25 a year. Every dollar you contribute goes directly to support and education for sufferers and their families. Being a non- profit 501(c)3 organization, your donation is tax deductible. Your continuing support is vital to our mission. NAME: ADDRESS: CITY: STATE: ZIP CODE: TELEPHONE:

9 1 Year Membership $25.00 New Renew We believe in your work and want to help. Enclosed is our contribution of $ Visa MasterCard Check Amex Card Number Exp: Name on Card Signature Mail to: STARS, P.O. Box 5507, Hilton Head Is., SC For more information: Call (843) or info@stars-us.org. Helpful Publications: Syncope Reflex Anoxic Seizures Vasovagal Syncope (Neurocardiogenic Syncope) BlackoutsChecklist All of STARS literature has been approved by a panel of international medical experts. For more information or to make a donation: (843) info@stars-us.org STARS P.O. Box 5507 Hilton Head Island, SC 29938