12 Lifestyle Modifications which work in POTS

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:

  1. To increase the amount of blood volume within the body

  2. To minimise pooling of blood in the legs by compression or strengthening the leg muscles

  3. To prevent further deconditioning

  4. To minimise adrenaline surges

  5. 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

 

  1. 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.

  2. Minimise loss of fluid by avoiding diuretics, caffeine, alcohol, and sodas.

  3. 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.

  4. 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.

  5. 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.

  6. Correction of any electrolyte, nutritional and hormonal deficiencies (especially Iron levels, B12, Folate, Vitamin D,  thyroid and testosterone in men.

  7. 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.

  8. Abstention from smoking and other recreational drugs.

  9. 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.

  10. 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.

 

  1. 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.

  1. 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.

https://youtu.be/xVfi2hbg69g

https://youtu.be/4qOvHeUgwmQ

Keywords: POTS; lifestyle;Fatigue; brain fog; Postural orthostatic tachycardia syndrome; chronic fatigue syndrome; ME; fibromyalgia

About the Author:

Dr Sanjay Gupta
I'm Dr Sanjay Gupta, a Consultant Cardiologist with specialist interest in Cardiac Imaging at York Teaching Hospital in York, UK. I believe that high quality reliable jargon-free information about health should be available at no cost to everyone in the world.

15 Comments

  1. Avatar
    Sean 14th October 2019 at 1:42 am - Reply

    Thank you!🙏

  2. Avatar
    Rina Cooney 14th October 2019 at 3:00 am - Reply

    Thank you

  3. Avatar
    Lyn Sherratt 14th October 2019 at 6:49 am - Reply

    Brilliant article. Thank you

  4. Avatar
    Leigh 14th October 2019 at 12:46 pm - Reply

    I find this statement, “excessive exercise can lead to ‘POTS crashes’ extremely validating. I was in a exercise program for POTS, however I would talk about not functioning after exercise and was not listened to resulting in the program being ineffective for me.

    • Avatar
      Robert 27th October 2019 at 9:15 am - Reply

      This was a good Dr, a list of action we could take. My problem was always not knowing how much walking to do as it seems to be the only thing I can do without getting/ feeling ill.
      Will have a look at the mobility website

  5. Avatar
    Meredith 14th October 2019 at 12:54 pm - Reply

    This is very useful information. Thank you so much!

  6. Avatar
    William R DeMott 14th October 2019 at 2:24 pm - Reply

    Very good article. I completely recovered from dysautonomia after about a year and believe that exercise was a key. Unfortunately, I suffered a relapse and it took 3 years to recover at about age 70. I started with swimming and kayaking which I could tolerate because of the prone and seated positions. After I was able to swim for a mile and kayak hard for 10 miles, I was able to start biking on the road. Now I have no symptoms and can bike hard for 30 miles in the Florida heat. I have been an athlete all my life and love to exercise. To avoid a relapse, I try to get good sleep, avoid dehydration and avoid stress and anxiety.

  7. Avatar
    Lisa 14th October 2019 at 3:30 pm - Reply

    Thank you so much for the detailed description of this disease! I am trying to help my 18 year old daughter through POTS and hemiplegic migraines. The symptoms of both can sometimes be similar. My daughter feels so exhausted, so defeated after 13 years of trying to get doctors to just believe her. This video feels like validation of her struggles.

  8. Avatar
    Susan 14th October 2019 at 10:41 pm - Reply

    What about fluid and sodium intake with orthostatic hypertension or hyperadrenergic Dysautonomia?

  9. Avatar
    Jenée Wolfram 15th October 2019 at 2:17 am - Reply

    Thank you for writing this piece, your interest in POTS, desire to teach, advocating on behalf of patients to their school or employer, and for giving practical lifestyle adjustment recommendations. Thank you!! I have found those same lifestyle adjustments to make a world of difference for me and my ability to manage my POTS. The top on my list would be the 32oz of water I drink from a reclined position in my bed each morning immediately upon waking, daily moderate exercise focused on leg and core strength, and several liters of electrolyte drinks (nuun tabs or liquid IV) each day. In addition, I find it very helpful to use ear protection or ear plugs in loud rooms, events and music venues to minimize adrenaline.

  10. Avatar
    Neg 15th October 2019 at 2:49 am - Reply

    Thank you so very much from NJ, USA. My daughter was recently diagnosed and is in grad school, a very full life and busy! POTS/EDS gets her down and it’s very hard being a grad student – she’s struggling talking to the faculty/ advisors because sometimes she can’t make it out of bed for her 8a lectures and Clinic work. Any advice would be appreciated I will share this with her and look forward to your posts and videos moving forward! A Concerned Mom .

  11. Avatar
    Renata Largent 15th October 2019 at 3:07 am - Reply

    Wonderful presentation. Love your simple explanation with a pen. Can’t wait for your new videos to come out.
    My son just turned 14 today. He was diagnosed with pots half a year ago. He struggles with severe headaches ,insomnia,dizziness,anxiety,digestive issues. Almost anything(esp math and LA) triggers his headaches. He stopped trying to go to school and doing cyber school with a lot of difficulties. We just got him recumbent bike for his birthday. We live in PA near Philadelphia,so far from UK.

  12. Avatar
    Mary 18th October 2019 at 10:22 am - Reply

    Many thanks for this precious blog post, Doctor. I had a question and do not know if this is the right forum to address it: for months I have been waking up with my heart racing and palpitating that seems to disappear once I properly get up to start my day. I also wake up feeling tired and non refreshed for a long time now. Are these fast heart beats arrythmias?

  13. Avatar
    Cheryl 22nd October 2019 at 6:12 pm - Reply

    Thank you for your descriptive video on POTS. I’m going to have my family and a few close friends watch it to better understand what I am going through. Your explanation in layman terms was brilliant and I’m looking forward to more videos you produce.

  14. Avatar
    Norlyn 27th October 2019 at 9:00 am - Reply

    What a useful & honest article! You’re an angel in disguise for sharing your gift of knowledge to everybody for free. Spreading this info to others who will benefit. Thanks a lot!

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