Hello everyone

My 24 year old son has been diagnosed as having POTS by a specialist in London four years after he had to step down from university with, initially, Chronic Fatigue like symptoms.

Other things have also developed since such as no longer being able to look at a computer screen or a flat screen TV (only cathode ray TV's are OK for him), very erratic bowel movement & digestive issues, but whether these are directly related to POTS, we don't know but suspect not.

Does anyone out there have POTS and, if so, how are you coping with it?

Many thanks,

Mike

Hello sorry to hear that your son has had this problem. I assume you are talking about Postural orthostatic tachycardia syndrome? Most POTS patients will see symptom improvement over the course of several years which is something to hang on to. Those who develop POTS in their early to mid teens during a period of rapid growth will most likely see complete symptom resolution by their mid twenties. Patients with post-viral POTS will also usually improve greatly or see a full symptom resolution. Adults who develop POTS, usually see milder improvement and can be plagued with their condition for life. Only very rarely will a teenager who develops POTS worsen over time and have lifelong symptoms. Recovered individuals do complain of occasional, non-debilitating recurrence of symptoms associated with autonomic dysfunction including dizzy spells, lightheadedness, flushing, transient syncope, and symptoms of irritable bowel syndrome.

I have had a look at the literature on this condition and I notice that several classes of drugs will provide symptom control and relief for POTS patients. Treatments will always be carefully tested due to medication sensitivity often associated with POTS patients, and each patient will respond to different therapies in different ways. The first line of treatment for POTS is usually fludrocortisone, or Florinef, a mineralcorticoid used to increase sodium retention and thus increase blood volume and blood pressure. An increase in sodium and water intake must coincide with fludrocortisone therapy for effective treatment.

Dietary increases in sodium and sodium supplements are often used and I am going to have a look at that for you as well.

Dietary change is often a big help in relieving the symptoms of POTS. Drinking more water improves symptoms for nearly all patients. Most patients are encouraged to drink at least 64 ounces (two litres) of water or other fluids each day. Alcohol has been shown to drastically exacerbate all types of orthostatic intolerance due to its vasodilation and dehydration properties. In addition to its adverse effects, it interacts unfavourably with many of the medications prescribed to POTS patients.

Eating frequent, small meals can reduce gastrointestinal symptoms associated with POTS by requiring the diversion of less blood to the abdomen. Increasing salt intake, by adding salt to food, taking salt tablets, or drinking sports drinks and other electrolyte solutions, is a treatment used for many people with POTS; however, salt is not recommended for all patients. Increasing salt is an effective way to raise blood pressure in many patients with orthostatic hypotension by helping the body retain water and thereby expand blood volume. Different physicians recommend different amounts of sodium to their patients.

Diets high in carbohydrates have been connected to impaired vasoconstrictive action. Eating foods with lower carbohydrate levels can mildly improve POTS symptoms.

Caffeine helps some POTS patients due to its stimulative effects; however, other patients report a worsening of symptoms with caffeine intake.
Tilting of bed to an angle of roughly 30 degrees can also help reduce symptoms. (Feet up, head down.)

Exercise is very important for maintaining muscle strength and avoiding deconditioning. Though many POTS patients report difficulty exercising, some form of exercise is essential to controlling symptoms and eventually, improving the condition. Exercises that improve leg and abdominal strength may aid in improving the muscle pump and therefore preventing pooling of blood in the abdomen and lower extremities. Aerobic exercise performed for 20 minutes a day, three times a week, is sometimes recommended for patients who can tolerate it. Certain modalities of exercise may be more tolerable initially, such as riding an exercise bicycle or swimming. However, as tolerable, upright exercise may benefit the participant through orthostatic training. All exercise programs for POTS patients should begin with low intensity exercises for a short duration and progress slowly.