POTS (postural orthostatic tachycardia syndrome) is commoner than we think. 1 in 3 people with a diagnosis of Chronic Fatigue Syndrome(CFS) or ME also have POTS. Similarly a large number of patients with Fibromyalgia probably also have POTS. In my practice, I have the privilege of managing the treatment of about 150 patients with POTS . I have found that lifestyle and behaviour change recommendations can be a very valuable and effective adjunct to pharmacotherapy in terms of both empowering the patient and helping improve overall quality of life.
The aim of the lifestyle modifications are five-fold:
To increase the amount of blood volume within the body
To minimise pooling of blood in the legs by compression or strengthening the leg muscles
To prevent further deconditioning
To minimise adrenaline surges
To correct any electrolyte, nutritional and hormonal deficiencies
Here are some of the lifestyle measures that I recommend to all my patients who have POTS . It goes without saying that you should always check with your own doctor if the following recommendations are suitable for you
Increase daily fluid intake to at least 3L of water a day. The fluid intake should be increased even more when fluid losses are higher such as during hot weather. I would also recommend drinking a couple of glasses of water first thing in the morning about 20-30 minutes before adopting an upright posture.
Minimise loss of fluid by avoiding diuretics, caffeine, alcohol, and sodas.
Increase daily sodium intake to 10-12g of sodium per day. This can be done by increasing salt intake by using more table salt on food but also by taking slow salt tablets. Salt will help retain more volume within the body. Without salt, all the extra water that is drunk will simply pass out in the urine.
Increased salt intake can be distasteful for some patients and i advise supplementing electrolytes (such as 2 sachets of Dioralyte/day in divided doses) to water.
Magnesium supplementation: It is estimated that 75% of the population is deficient in Magnesium. The Blood tests for magnesium are notoriously unreliable and therefore i usually recommend magnesium supplementation regardless of the blood test results. In terms of supplements, i advise my patients to avoid magnesium oxide but other commonly available magnesium supplements such Magnesium CItrate 200mg daily or magnesium taurate 125 mg bd work well.
Correction of any electrolyte, nutritional and hormonal deficiencies (especially Iron levels, B12, Folate, Vitamin D, thyroid and testosterone in men.
In terms of food, it is important to eat small regular protein-rich meals to minimise low blood sugar levels which can cause adrenaline surges. It is also best to avoid large meals especially at night and at least 4 hours before sleeping. This is to avoid splanchnic pooling which can make symptoms worse.
Abstention from smoking and other recreational drugs.
Compression stockings can be extremely helpful in reducing venous pooling and increasing the return of blood to the heart. You want to wear compression stockings that extend up to the waist and exert 30-40 mm of pressure. The best place to get measured out for these are at a local lymphoedema clinic. Some brands can be prescribed on the NHS. Details are available on the POTSUK website.
Virtually every patient with POTS will complain of a severe lack of refreshing, restorative sleep.
An important cause for sleep disturbance may be adrenaline surges in response to external stimuli such as noise and light. This is why many patients with POTS will complain of waking up with fast heart palpitations. Sleep quality can be markedly improved by improving sleep hygiene.
It is important that patients avoid using gadgets which emit blue-light (such as smart phones etc) whilst lying in bed late at night. It is best to switch off all gadgets and only lie in bed once the patient is ready to sleep.
Taking a relaxing bath and following it with a routine of rituals such as relaxation or meditation can help.
Some of my patients have found taking Melatonin supplements and having acupuncture to be helpful.
In some patients, I have found the administration of a very small dose of beta-blocker to help with sleep. The beta-blocker may improve sleep quality by blunting adrenaline surges.
A lot of patients with POTS also complain of pain. Whilst people control pain during the daytime with medication, they rarely think about controlling pain at night when they are asleep. Pain will cause adrenaline surges and therefore controlling pain at night may be helpful.
I do not recommend sleeping tablets for two main reasons. Whilst they may help patients fall asleep, they don’t guarantee maintenance of high quality restful sleep during the night (and many patients with POTS are intermittently woken up during the night because of adrenaline surges). Secondly, they can be addictive and have side effects.
Many patients with POTS fall into a vicious cycle of lack of sleep, constant fatigue, depression and pain which all feed off each other and worsen quality of life. It is important therefore that patients continue to try and remain socially integrated and surround themselves with a strong support system of friends and family.
I often, with the permission of my patients, write to their employer, school or university explaining the nature of POTS and the workplace adjustments that can be made to help the patient perform their duties without making their POTS symptoms worse. I find this simple intervention can really patients by reducing the added stress of having to cope with a job or course whilst always feeling exhausted and unwell.
Many patients with POTS have also found themselves being systematically neglected and derided by the medical community over several years. The trauma from this may manifest as overt anxiety and depression which can in turn make the POTS symptoms worse and i always encourage patients to address these symptoms by seeking psychological counsel.
Exercise is hugely important and can be extremely effective at improving quality of life but may also be a bit of a double-edged sword. Unaccustomed and excessive exercise can lead to ‘POTS crashes’ which can make everything worse. However a supervised gradual exercise program administered by a qualified and experienced physiotherapist can be extremely effective and should always form part of the management plan. A common exercise protocol which i have found to be effective in my patients is the Levine Protocol. I am fortunate to be working in collaboration with an exceptional physiotherapist, Emma Mccabe, (www.mobilityphysiotherapy.co.
uk) who has experience with working with patients with joint hypermobility and Ehlers-Danlos syndrome (many of whom also have POTS) and patients have managed to improve their exercise times from 2 minutes to a remarkable 45 minutes. Exercise is a treatment rather than a cure in POTS and therefore has to continue long-term but benefits start becoming visible after 6-8 weeks.
I hope the above tips are helpful and would love to hear from you with regards to other lifestyle measures that may have worked for you.
Here are some videos, I have done on this subject.
Keywords: POTS; lifestyle;Fatigue; brain fog; Postural orthostatic tachycardia syndrome; chronic fatigue syndrome; ME; fibromyalgia