Living with PoTS *********** General Tips

Transcription

1 Living with PoTS Treatment for PoTS falls into two different categories: Non-pharmacological (without medicines) and pharmacological (using medicines), with non-pharmacological therapies being the cornerstone of any PoTS treatments. In milder cases of PoTS, those therapies might be sufficient to control symptoms, and might be all that is needed. *********** General Tips PoTS has an impact on every aspect of life which include the physical, social and psychological. Symptoms tend to fluctuate from day to day making management a challenge. Medication can improve symptoms, but there are many non-pharmacological (without medication) methods which may help. Factors which may have an impact on symptoms Time of day symptoms tend to be worse in the morning Rapidly moving for a lying/sitting to standing position Dehydration Food ingestion Alcohol Physical exertion Menstrual period Prolonged bed rest or deconditioning (becoming unfit) Prolonged standing (*or sitting)

2 *Daily management of symptoms Pace yourself throughout the day. Try not to fit too much in there will always be another day. Take your time and avoid rushing. Goals be realistic; ensure that they are achievable. Planning if there is something specific you need to do on a day, plan for it rest well beforehand and create time to recover afterwards. Limits learn to know and live within your limits. Avoid stress the autonomic nervous system is the bodies fight/flight mechanism, and is activated during periods of stress. PoTS sufferers tend to be very sensitive to stressors, be they psychological or physical, positive or negative. Infections worsen symptoms rest and accept a reduction in activity levels. You may take longer than expected to recover. Stairs are a challenge try to limit the amount of times needed to run up and down stairs. Walk up slowly and steadily. Take a lift where possible! Mobility aids For those with the most severe symptoms, the use of a wheelchair or mobility scooter may be helpful to manage daily living. Elevating the head of the bed has also been recommended. Salt and Fluid Salt and fluid will increase circulatory volume and blood pressure. This may improve symptoms of PoTS. A high salt diet of between 3-10g per day may be recommended. However this can be dangerous in some patients such as those with high blood pressure, kidney and heart disease and therefore extra salt should only be taken if recommended by your doctor. At least 2-3 litres of fluid per day is usually advised.

3 Drinking cool fluids quickly may also help elevate blood pressure and lower heart rate. *In addition to adding extra table salt to food, the following usually contain higher levels of salt: Anchovies Bacon Bread products Cheese Corned beef Crisps Fish sauce (nam pla) Gravy granules Miso Mustard, prepared yellow Olives Pasta sauce Pickles Pretzels Salami Salted nuts Sausages Smoked meat and Fish Soy sauce Soup tinned or packet Stock cubes Tomato ketchup Some manufacturers now make lower salt versions of these products so it is always worth checking the food label for salt content. If it is not possible to ensure adequate salt intake through diet alone, salt tablets can be prescribed. Slow sodium tablet are available on prescription and are coated to reduce nausea. (6g of salt is equivalent to one teaspoon or 10 Slow Sodium tablets) Eating small amounts and often can be helpful. Avoid large meals. After eating, blood is diverted to the digestive tract and away from maintaining blood pressure and heart rate which may increase symptoms. *It is important to eat a nutritionally balanced diet. Caffeinated drinks, alcohol and refined carbohydrates may make symptoms worse, but everyone is different so you need to work out your own triggers. *Cooking Diet Sit down on a perching stool while preparing food to limit prolonged standing. On a good day, cook a large batch of food and freeze in portions for a bad day. Use energy saving devices such as a slow cooker or electric chopper. Get someone else to do the washing up!

4 Exercise There is evidence that light to moderate exercise is beneficial or even curative in some cases of PoTS. Increasing leg strength and core (central) muscles will improve blood return from the legs. Twenty to thirty minutes of aerobic exercise should be undertaken at least three times a week along with resistance training. Forms of exercise may include: Swimming Rowing Recumbent biking progressing on to upright biking *Pilates - focuses on core strength, and is primarily done horizontally Lower limb resistance training Walking Jogging Find an activity which works for you, starting with recumbent (sitting or lying down) exercise if you have not done much for a while. Start slowly and gradually increasing time and intensity. Upright exercise can be added after 2-3 months of recumbent exercise. Have realistic expectations and know your limits, everyone will be different. Factor in time to rest after exercise fatigue may develop in the days following exercise. Counter manoeuvres Fainting can be avoided by learning to take notice of early warning signs such as lightheadedness, dizziness, nausea, and doing something about it. Lie down immediately; if possible elevate your legs If your circumstances make this difficult: Cross your legs while standing or rock up and down on your toes Clench buttocks and abdominal muscles Clench your fists The risk of fainting can also be minimised by: Come up from lying to standing slowly, sitting for a while first. Avoid prolonged standing (* or sitting) *fidgeting is the key. *Avoid having your hands over your head for a prolonged time as the heart needs to work harder thereby increasing tachycardia. *Prolonged sitting can cause symptoms in some people. Elevating legs can be helpful.

5 Compression Compression tights or abdominal binders have been advocated. These should be waist-high of at least 30mmHg at the ankle (Grade II compression) in order to help reduce the amount of blood pooling in the legs. Many are available on prescription, although it is important to be measured first to obtain the correct size. *Full-length compression tights which are used by athletes can be purchased in some running shops. Sleep PoTS patients often have poor quality of sleep. This compounds fatigue and therefore impacts upon quality of life. Potential causes of sleep disturbance need to be identified such as underlying anxiety and depression. There may also be other physical causes such as a low iron levels which may cause restless leg syndrome. Management is a challenge. Some things that may help: Optimum room environment - Ensure your bed is comfortable, the bedroom should not too hot, cold, light or noisy. *Ear plugs and blackout blinds may help with noise and light. *A fan and other cooling cool aids can be purchased for hot summer months. *Blankets which can easily be added or removed during the cold winter months. *Wool socks may help cold feet. Avoid stimulants such as tea, coffee, alcohol in the evening. Don t smoke. If you are unable to go to sleep, get up after minutes, go to another room for a while and try again when sleepy. Avoid heavy meals before bed. Medication o *SSRI antidepressants have improved sleep quality in some people. o Over the counter sleep medicine should be avoided as they usually contain an antihistamine which may worsen symptoms of PoTS such as tachycardia and fatigue. o The use and effectiveness of other sleep medication is debatable and needs to be discussed with your GP.

6 *Psychological help Focus on what you can do and not what you can t do. Keep a positive outlook focus on what you CAN do A positive attitude will not cure PoTS, but will make you feel better about the situation. It will have a positive impact on your symptoms, your self esteem and quality of life. Cognitive behavioural therapy can help you come to terms with the life changes needed to manage the condition, thereby enabling you to think positively and manage the daily frustrations and issues you face. Be creative with your time. What can you do now that you would have not had time for before? Get involved in a project, take up a new hobby and spend time with friends... When one door closes, another opens; but we often look so long and so regretfully upon the closed door that we do not see the one which has opened for us. Alexander Graham Bell *Personal Hygiene Avoid taking a hot or prolonged shower/bath as this dilates your blood vessels, thereby increasing symptoms. Finishing your shower with cool water will help. Sit on a stool by the sink and in the shower. Dry shampoo spray and wet wipes may be an option on a bad day. Drink a glass of fluid before and after showering. Temperature regulation Heat causes blood vessels to widen thereby increasing heart rate and symptoms. Most people find symptoms are worse during the summer. *You will need to further increase salt and fluid intake if you feel hot or start to sweat more. *Have a spray bottle of water at hand for your face and neck. This will cool you down as the water evaporates from your skin. *A fan can be helpful. *Cooling vests have been used by some people

7 *Travel Flying causes dehydration and can worsens symptoms. Drink more fluid than normal. You can take an empty drinks bottle through security. o If you explain that your medical condition requires high fluid intake, they will fill it for you during the flight. Avoid alcohol. Wear compression stockings. Elevate your feet where possible. Avoid staying stationary for too long; get up and walk around when possible. Driving By law you need to tell the DVLA about any health condition that may affect your ability to drive. Failure to do so could lead to prosecution and invalidate your insurance. Problems that you should consider reporting include tachycardia, syncope and dizziness. It does not always mean that you will be stopped from driving. Follow link for further information, forms and a list of conditions which may affect your driving. Illustrations *Currently no available medical evidence. Based on patient or expert experience and opinion. Details regarding the sources of evidence used in the production of this leaflet are available on the PoTS UK website. See Written by: Lorna Busmer Medically approved by: Dr Kavi, Prof Newton Updated: 24/6/2013 Review Date: 1/7/2015 Version 3