Diet and Postural Tachycardia Syndrome (PoTS)- What’s the link?

October is dysautonomia month and the 25th October marks PoTS Awareness Day. As part of this we wanted to de-mystify the link between diet and PoTS and share the latest evidence-based advice.

 Fluid and Postural Tachycardia Syndrome (PoTS)

 Ensuring adequate hydration is essential to maintain optimal blood volume. For people with PoTs where blood volume can be lower (hypovolemic PoTs) or venous return of blood to the brain can be limited (Neuropathic PoTS), maximising the volume of the blood in the system can help to reduce symptoms.

As a blanket rule, adults with PoTs are recommended to aim for 2 – 3 litres of fluid every day 1,2. However, our bodies are not computers and therefore the exact volume may differ for everyone, and vary from day to day depending on activity levels, the weather and even whether you currently have a cold or infection.

Aim for the 2 – 3 litres as a start, but keep an eye on your urine. It should be a pale-yellow colour. If it’s dark, this is a clear sign that you need to try and drink some more. This can be in the form of any liquids, from soup to tap water, sparkling water or even squash.

Top Tip: Buy a pretty 1L water bottle and fill it up before you go to bed. Pop it by your bed then when you wake up you have nice bottle of liquid to drink throughout the morning. At lunch time, fill it up again and repeat.

Another hurdle many with PoTS face is their ability to drink this quantity of liquid, due to swallowing difficulties, bladder dysfunction or fatigue. Increasing fluids in foods can be especially helpful here… Why not try:

-            Custard / Cream

-            Ice Cream / Ice Lollies

-            Ice Cubes

-            Slushie drinks

-            Jelly

-            Soup

-            Gravies / Sauces

-            Fruits and Vegetables also contain lots of water!

Some people also find that caffeine and alcohol induce a detrimental effect on their symptoms. Therefore most guidelines recommend the avoidance of reduction in alcohol and caffeine containing drinks.4

 Salt and Postural Tachycardia Syndrome (PoTS)

According to the 2015 Heart Rhythm Consensus Statement, patients with PoTs should aim for 10 – 12g of salt per day (3800 – 4600mg of Sodium) –equivalent to 2 level teaspoons. However, you should ask your medical team for a specific salt target, especially if you have a condition such as heart disease or renal disease, which may mean that it isn’t safe for you to increase your salt intake.

If you have been advised to increase your salt intake, additional salt can be added to meals, consumed through snacks or drank in the form of electrolytes. Some people are, also, prescribed salt tablets by their cardiologist.

 How to add salt to meals:

-            Sprinkle in table salt when cooking vegetables

-            Use pre-made sauces and gravies

-            Add condiments such as tomato ketchup

-            Add soy sauce and miso paste to sauces, vegetables or marinades

-            Add pickles and roasted nuts to dishes

 High salt snacks:

-            Crisps / popcorn / pretzels

-            Cheese

-            Processed meats e.g. pepperoni

-            Olives

-            Roasted nuts

-            Tinned soup

Electrolyte drinks can come in a range of forms, from powders, to dissolvable capsules to tablets. They also vary significantly in their salt content. Please get advice from your Healthcare Professional on which electrolyte may be the most suitable for your needs.

 Main Meals  

 When we eat, some of our blood is diverted away from the brain to our digestive system to aid the break down and absorption of the nutrients in the food. As a result, many with PoTS experience a worsening of symptoms following large meals .

In view of this try to aim smaller, more frequent meals throughout the day as the smaller amount of food requires less blood to be diverted, and therefore should reduce the symptoms associated with eating.4

A good pattern to start with is 6 small meals a day – therefore, your day would look something like this…

7am – Breakfast

9:30am – Mid Morning Snack

12:00 – Lunch

14:30 – Mid afternoon snack

17:00 – Dinner

19:30 – Evening snack

Carbohydrates and Postural Tachycardia Syndrome (PoTS)

Another challenge many with PoTS face is what to eat at these mealtimes. For the majority of the UK, most meals centre around carbohydrates, whether that be toast for breakfast, a sandwich for lunch or pasta bake for dinner, many of us grew up on carbohydrate centred dishes.

Unfortunately, for many with PoTS, they find that the consumption of large quantities of these starchy carbohydrates, particularly refined carbohydrates such as white bread, make their symptoms worse.

So what do you eat?

Tip 1: Split your usual meal in half, have half now and half in a few hours

Tip 2: Swap out the white carbohydrates for lower glycaemic index (GI) options (this means slow release carbs) such as wholewheat pasta, wholemeal bread with seeds and wholegrain or wild rice.

Tip 3: Make the portion of the carbohydrate smaller and the protein and vegetables components of the dishes larger

 Gluten and Postural Tachycardia Syndrome (PoTS)

 Gluten is a hotly debated topic within mainstream media, but outside of this forum, the nutrition community is unified in its opinion that gluten is NOT inherently harmful for the majority of the population.

There is no scientific evidence that gluten causes ill health within the healthy population5,6. In fact, it is generally recommended that if required, the implementation of a gluten free diet should only be done with the guidance of a qualified dietitian in order to ensure nutritional adequacy and prevent the risk of the individuals incurring micronutrient deficiency’s, high salt, fat and sugar intakes which may in turn increase the risk of ill health7,8,9,10.

The only individuals who should avoid gluten are those with Coeliac disease or diagnosed Non Coeliac Gluten Sensitivity.  

It is important to note that the occurrence of Coeliac Disease does appear to be more common within those with PoTS compared to the general population. Therefore, if you have symptoms such as:

-            Bloating

-            Diarrhoea

-            Stomach cramps

-            Unexplained weight loss

Then we recommend asking your GP to test you for Coeliac Disease BEFORE removing gluten containing foods from your diet. It is essential to be consuming 2 portions of gluten containing foods every day for the past 6 – 8 weeks prior to taking the blood test to ensure it provides an accurate result. Examples of a portion of gluten are; 2 slices of bread, 1 bagel or 2 crumpets. Vitamins and Mineral deficiencies and PoTS

When it comes to PoTS, the presence of micronutrient deficiency is more common than that of the general population. Many present with low iron storage (also known as Ferritin), Vitamin B12 deficiency, vitamin B1 deficiency, and Low Vitamin D. 11,12,13,14

However blindly taking supplements is not the answer…

Step 1:

If you are experiencing any of the following symptoms, then ask your GP to run blood tests for these nutrients:

-            Fatigue

-            Grey pallor

-            Hair loss

-            Irritability / Low Mood

-            Increase in orthostatic intolerance without the presence of other triggers e.g. heat

Step 2:

Follow the advice of your GP regarding supplementation. Remember, general UK public health guidance recommends that everyone supplements 10ug of Vitamin D once daily throughout the months of October to March due to the lack of sunlight.

Step 3:

Aim to include 5 portions of fruits and vegetables into your diet each day to increase your dietary intake of vitamins and minerals

 Easy ways to increase your fruit and vegetable intake include:

-            Adding frozen berries to porridge

-            Adding a tin of lentils / beans to curries, stews and casserole’s

-            Add a side salad to wraps, sandwiches or bagels

-            Add a portion of fruit to your snacks

Common comorbidities that may make diet even more challenging…

It is estimated that 90% of PoTS experience gut symptoms15, whilst the occurrence of commodities such as IBS, EDS, MCAS and ME/CFS are also more common than within the general population, making it even harder to follow the dietary guidelines.15, 16 These conditions can culminate in restrictive diets, malabsorption, low weight and malnutrition

Anecdotally in clinic, we see that the more restrictive an individual’s diet is, the worse their symptoms are, as the co-occurring energy and micronutrient deficiency puts so much strain on the body, it’s functionality is worse than ever. Therefore, the link between Diet and PoTs is clear.

In summary, to help manage your PoTs symptoms:

-            Aim for 2 – 3 litres of fluid per day

-            Get advice from your health provider on whether increasing your salt intake is safe and helpful to you

-            Eat small frequent meals

-            Reduce your consumption of refined carbohydrates in exchange for low GI varieties

-            Avoid or reduce alcohol and caffeine intake

 If you are still struggling with your diet in the context of PoTS, please reach out to a qualified dietitian to help support you to navigate this complex condition, and try to help you to manage your symptoms and improve your quality of life.

References:

1. Sheldon RS, Grubb BP, 2nd, Olshansky B, Shen WK, Calkins H, Brignole M, et al. 2015 heart rhythm society expert consensus statement on the diagnosis and treatment of postural tachycardia syndrome, inappropriate sinus tachycardia, and vasovagal syncope. Heart Rhythm. 2015;12(6):e41-63.

2. Raj SR, Guzman JC, Harvey P, Richer L, Schondorf R, Seifer C, et al. Canadian Cardiovascular Society Position Statement on Postural Orthostatic Tachycardia Syndrome (POTS) and Related Disorders of Chronic Orthostatic Intolerance. Can J Cardiol. 2020;36(3):357-72.

3. George SA, Bivens TB, Howden EJ, Saleem Y, Galbreath MM, Hendrickson D, et al. The International POTS Registry: evaluating the efficacy of an exercise training intervention in a community setting. Heart Rhythm. (2016)13:943–50. doi: 10.1016/j.hrthm.2015.12.012

4. Lei LY, Chew DS, Sheldon RS, Raj SR. Evaluating and managing postural tachycardia syndrome. Cleve Clin J Med. 2019;86(5):333-44.

5. Kmietowicz Z. Gluten-free diet is not recommended for people without celiac diseaseBMJ  2017;  357 :j2135 doi:10.1136/bmj.j2135

6. Raju SA, Rej A, Sanders DS. The truth about gluten! British Journal of Nutrition. 2023;129(2):255-261. doi:10.1017/S0007114522001933

7. Vici, G, Belli, L, Biondi, M, et al. (2016) Gluten free diet and nutrient deficiencies: a review. Clin Nutr 35, 1236–1241

8. Skodje, GI, Minelle, IH, Rolfsen, KL, et al. (2019) Dietary and symptom assessment in adults with self-reported non-coeliac gluten sensitivity. Clin Nutr ESPEN 31, 88–94.CrossRefGoogle ScholarPubMed

9. Potter, MDE, Brienesse, SC, Walker, MM, et al. (2018) Effect of the gluten-free diet on cardiovascular risk factors in patients with coeliac disease: a systematic review. J Gastroenterol Hepatol 33, 781–791.CrossRefGoogle ScholarPubMed

10. Wild, D, Robins, GG, Burley, VJ, et al. (2010) Evidence of high sugar intake, and low fibre and mineral intake, in the gluten-free diet. Aliment Pharmacol Ther 32, 573–581.

11. Li J, Zhang Q, Hao H, Jin H, Du J. Clinical features and management of postural tachycardia syndrome in children: a single-center experience. Chin Med J (Engl).(2014) 127:3684–9. doi: 10.3760/cma.j.issn.0366-6999.20140244

12. Antiel RM, Caudill JS, Burkhardt BE, Brands CK, Fischer PR. Iron insufficiency and hypovitaminosis D in adolescents with chronic fatigue and orthostatic intolerance. South Med J. (2011) 104:609–11. doi: 10.1097/SMJ.0b013e3182246809

13. Öner T, Guven B, Tavli V, Mese T, Yilmazer MM, Demirpence S. Postural orthostatic tachycardia syndrome (POTS) and vitamin B12 deficiency in adolescents. Pediatrics.(2014) 133:e138–42. doi: 10.1542/peds.2012-3427

14. Blitshteyn S. Vitamin B1 deficiency in patients with postural tachycardia syndrome (POTS). Neurol Res. (2017) 39:685–8. doi: 10.1080/01616412.2017.1331895

15. Mehr SE, Barbul A, Shibao CA. Gastrointestinal symptoms in postural tachycardia syndrome: a systematic review. Clin Auton Res. 2018 Aug;28(4):411-421. doi: 10.1007/s10286-018-0519-x. Epub 2018 Mar 16. PMID: 29549458; PMCID: PMC6314490.

16. Harris CI. COVID-19 Increases the Prevalence of Postural Orthostatic Tachycardia Syndrome: What Nutrition and Dietetics Practitioners Need to Know. J Acad Nutr Diet. 2022;122(9):1600-5.