POTS is one type of Dysautonomia. Other types are Orthostatic Intolerance, Neurocardiogenic Syncope, Multiple System Atrophy and many other conditions which cause malfunction of the autonomic nervous system. It is quite common for those with EDS to have POTS and I was diagnosed with it in 2013 by a tilt table test.
Postural Orthostatic Tachycardia Syndrome is quite a mouthful. Orthostatic is to do with standing straight or upright, and the condition denotes a problem with fast heart rate (tachycardia) and the body’s inability to pump blood properly when standing. The worst thing about POTS is the inability to stand at parties, stand in queues, stand to work……stand for any length of time at all. If we do, our joints may lock, our faces redden, we can feel faint or sick, become unable to concentrate, feel as if the surrounding voices are melting into one great fog, shake and have tremors (annoying when eating or drinking) and feel abnormally exhausted very quickly. Jolly inconvenient being a party pooper…..
There are many things which a human body normally does automatically and which we don’t have to think about. We breathe, have bowel functions, pump blood around the body and many other things. These are functions of the autonomic system. POTS is linked with an autonomic system which is not working as it should (dysautonomia) and can cause all sorts of things including chronic sleep disturbance because of rapid heartbeat at night (when most people’s heartbeats slow down and allow them healing REM sleep), Irritable Bowel Syndrome, visual problems, migraines, acid reflux, odd regulation of heat and cold in the body giving freezing cold extremities of hands and feet………We have all of these.
“PoTS is an abnormal response by the autonomic (involuntary) nervous system to standing up. To be diagnosed with PoTS, a patient must experience the following:
- A group of symptoms in an upright position (usually standing) that are relieved by lying down.
- These symptoms should be associated with an abnormally high and persistent increase in heart rate of 30 beats per minute (40 bpm if under 19 years of age) within ten minutes of standing.
Although symptoms are similar to those experienced by people with abnormally low blood pressure (BP), blood pressure does not usually drop in PoTS.
PoTS can develop in a number of different diseases or situations. The reason for this is not properly understood but it is possible that there is a malfunction of the nervous system that controls autonomic functions in the body.
When a healthy person stands up, to avoid blood dropping down into the limbs and abdominal cavity, blood vessels contract immediately and heart rate increases slightly to maintain blood supply to the heart and brain. In PoTS, this automatic adjustment to standing does not work correctly, resulting in an excessive rise in heart rate, increased epinephrine in the blood and altered blood flow to the brain. PoTS is more common in women and between the ages of 13 and 50 years.
What are the symptoms of PoTS?
Symptoms can be debilitating, ranging from mild to severe and varying from day to day.
- Dizziness or pre-syncope (almost fainting).
- Syncope (fainting).
- Palpitation (awareness of heartbeat).
- Headaches – orthostatic headaches (due to upright posture)/migraine.
- Brain fog (difficulty in thinking).
- Sense of anxiety.
- Visual problems (greying, tunnel or glare).
- Gut problems (nausea, diarrhoea, pain).
- Chest pain.
- Poor sleep.
- Purplish discoloration of skin due to blood pooling in hands and feet.
- Bladder problems.
Triggers that can worsen PoTS
- Excess heat.
- After eating – especially refined carbohydrate: sugar, white flour etc.
- Standing up quickly.
- Time of day (especially rising after wakening).
- Menstrual period.
- Deconditioning or prolonged bed rest.
- Alcohol (as it dilates blood vessels).
- Inappropriately excessive exercise.
- Temporarily during illness such as viral infections or after operations.*
How is PoTS diagnosed?
GPs may recognise the condition, but a clear diagnosis would normally be made by an electrophysiologist (a heart rhythm expert), neurologist or other hospital physician. These specialists are often found in cardiology, blackout or syncope clinics (although only a minority of people with PoTS experience blackouts).
The following tests may be used to confirm a diagnosis or exclude other conditions with similar symptoms:
- Active stand test. The patient rests flat for a few minutes and heart rate and BP are recorded. After standing up, further recordings are taken over 10 minutes.
- Tilt table test. The patient rests flat on a special bed with a footplate whilst BP and heart rate recordings are made. The bed is then tilted (head end up) for up to 45 minutes while further recordings are taken. (Both tests are stopped if the patient faints or if satisfactory recordings have been made).
- Other tests may include 12-lead electrocardiogram (ECG), 24-hour ECG, 24-hour blood pressure monitoring, blood tests (full blood count, kidney and liver function, thyroid function, calcium, diabetes tests, lying and standing norepinephrine levels), echocardiogram, exercise test, autonomic screening tests.
PoTS was first described in medical journals in 1993, but many medical professionals are still unaware of the condition today. Patients are commonly misdiagnosed with other conditions such as anxiety and depression, reflex syncope (vasovagal syncope) and chronic fatigue syndrome.
What can I do to improve my condition?
Lifestyle changes may be all that are needed to control symptoms.
- At least 2-3 litres of fluid per day are usually advised to boost blood volume. As symptoms can be worse in the morning, it may help to boost fluids before getting out of bed. In an emergency, drinking 2 glasses of water quickly can rapidly elevate BP and lower heart rate.
- Intravenous fluids have been used, but can cause serious complications with regular use.
- Alcohol dilates blood vessels and may make symptoms worse.
- Coffee and other caffeinated drinks may also worsen symptoms, although some find them helpful.
Food and salt
A high salt diet of up to 10 g per day may be recommended. Extra salt can be dangerous in some conditions such as high blood pressure, and kidney and heart disease, and therefore should only be taken if recommended by your doctor. Salt tablets can also be prescribed. Slow Sodium® tablets are available in the UK on prescription and are coated to reduce nausea.
Eating small amounts and often can be helpful. Symptoms can worsen after a large meal as blood is diverted to the digestive tract and away from other areas. Some people may find refined carbohydrates aggravate symptoms. Avoid rich sugary foods and those containing white flour. Eat lots of unprocessed foods such as vegetables, fruit, beans and foods that contain whole grain.
To avoid fainting or near fainting, take notice of early warning signs such as light-headedness, dizziness, and nausea. Lie down immediately and, 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 your fists, buttocks and abdominal muscles.
The risk of fainting can also be minimised by standing up slowly if you have been sitting for a while. Avoiding prolonged standing or sitting. Elevating legs can be helpful.*
Compression tights should be waist high and give at least 30 mm Hg of pressure at the ankle (grade II compression) in order to help reduce the amount of blood pooling in the legs. Sports compression clothing may help.
Heat worsens symptoms. Dress in layers of clothes, so layers can be removed to prevent overheating. Extra salt and fluid intake should be increased if you feel hot or sweat more. A spray bottle of water for your face and neck will cool you down as the water evaporates from your skin. A fan or air conditioning can be helpful. Cooling vests have been used.*”
See also POTS: A guide for Medical Professionals