[POLL] Which Diet Plan For POTS?

[albertspa]

Hey guys,

So I keep finding blogposts, articles and videos about how a particular diet plan may be beneficial to POTS patients and might relieve symptoms. However I can't seem to find any concrete reasonings in terms of how it's supposed to counteract or alleviate the pathophysiological mechanisms leading to POTS symptoms (taking aside the high fluid and sodium intake that're recommended in the conventional treatment for POTS). Eating small meals throughout the day and lowering carbs [1] [2] [3] [6] [7] [8] [9] seems to be the consensus everywhere, even though there don't seem to be any definitive recommendations in medical literature related to POTS (except for mentions of patient reports in relation to carbohydrates in some medical papers [Mehr-2018] and brief recommendations when it comes to eating smaller portions [Bryarly-2019], as well as a proposition for a gluten-free-diet in [Zha-2023])

So far the regimens I've found online, that reportedly are said to relieve POTS symptoms, are:

• Mediterranean diet (Emphasizes fruits, veggies, whole grains, and healthy fats) [4]
• Dietary Approaches to Stop Hypertension (DASH) Diet (Reduces sodium, promotes fruits, veggies, and whole grains) [4]
• Mediterranean-DASH Intervention for Neurodegenerative Delay (MIND) Diet, (Focuses on brain-boosting foods like leafy greens and berries) [4]
• Peripheral Arterial Disease (PAD) Diet (Reduces saturated fats, increases fiber, potassium, magnesium) [4]
• Low Inflammatory Foods Everyday (LIFE) Diet (based on dark green, leafy vegetables)
• Low FODMAP diet (Restricts certain fermentable carbohydrates) [5]
• Portfolio diet (Adds cholesterol-lowering foods like soy, nuts, and fiber) [4]
• Ketogenic diet (High-fat, low-carb diet inducing ketosis) [10]
• Gluten-free diet (Eliminating gluten-containing grains like wheat, barley, and rye) [Zha-2023]

I'd like to find out what diet plans you guys have found to be most helpful with your POTS symptoms (hence the poll) and would love to hear your experiences and insights!

[MikeO]

did not fill out the poll cuz i do not have POTS but i do have a ANS dysfunction. I have read that a number of folks eat a low/lower carb diet with more protein. diabetics eat a similar diet that are motivated about their DM.

I do have to say be careful with the keto/low no carb low fat/no calorie diet. I have induced EDKA a couple of times when fasting after a restricted diet mentioned.

Fod wise i have done a few resets (back to safe foods) and ventured back out to find what works for me. sure i do not follow any particular diet regimen. 

[MomtoGiuliana]

High salt, high potassium (from food), minimized high glycemic index foods, small more frequent meals, lots of fluids generally.

[Sarah Tee]

@albertspa, the reason for the small frequent meals is to avoid large amounts of blood rushing to the digestive system, leaving the head even lower on blood supply than usual.

This is mentioned in lectures frequently, although perhaps not in medical literature. I imagine the reason is that it is not mentioned in the literature is because it is almost impossible to measure blood distribution deep in the body, i.e. in the abdomen. (Measuring blood distribution generally in the body is hard, as is measuring blood volume, although there are new technologies spreading.)

So no-one has been able to do a study on blood pooling in the abdomen in POTS patients yet. It is something doctors have deduced from their patients’ responses to large meals, but can’t prove.

There is some research on the effect of carbohydrates being done at Vanderbilt University. There is a lecture on this but the audio quality is poor:

 

Copied from another post of mine:

Vanderbilt University researchers are looking at one possible cause: abdominal blood pooling caused by excessive release of a chemical called GIP, which signals for vasodilation in and around the gut.

They’ve only studied this in people with POTS, but presumably this could apply more broadly.

This is the pilot study:

https://pubmed.ncbi.nlm.nih.gov/35232225/

And this what they are doing now:

https://clinicaltrials.gov/ct2/show/NCT05375968?term=vanderbilt+venous+capacitance&draw=2&rank=1

If you click on “Show detailed description” after the brief summary it gives an explanation of the hypothesis.

There is a natural counteragent to GIP made by the body, which you could call anti-GIP. (It doesn’t have a name yet, just a formula.) So this research could one day lead to a treatment. But it will be a while off.

The anti-GIP chemical is available to researchers and has been administered to animal and human subjects in studies, but it isn’t registered as a medication yet. Also in the studies I saw, when it was being used in experiments to understand the chemistry of the digestive process, it was given intravenously.

Edited to add: Another way we can deduce some of the above is that refractory POTS patients and I think also OH patients have been shown to respond to a drug called octreotide. It stops the blood vessels in the digestive system/abdomen from dilating excessively. Unfortunately it doesn’t act specifically, like the anti-GIP chemical I mentioned above. So while it is reducing excessive vasodilation in the abdomen, it is also doing other things that can end up being harmful.

[Looking_for_light]

 

@albertspa Great topic!

Wholefood, Mediterranean-inspired, vegetarian (no animal products bar eggs and dairy) diets. In past posts, others have said they also choose similar diets. Contains lots of roughage and antioxidants... etc. Olive oil on salads etc. 

To quote a phrase 'food isn't medicine', but an unhealthy diet full of ultra-processed foods, HFCS and additives would seemingly make matters for those with the condition worse. Eating healthily is hard for many for various reasons though (it should not be a privilege, but in reality, it sadly is). Of those mentioned - 

Portfolio diet (Adds cholesterol-lowering foods like soy, nuts, and fiber) [4] - sounds great. 

 

DASH diet (Reduces sodium, promotes fruits, veggies, and whole grains) [4] For many with the condition, salt needs to be increased not reduced. 

Agree with all the other helpful comments above too, including @MikeO on keto - it sounds very extreme and really hard to follow and manage for chronically ill people, unless specifically indicated - regimes like that should be done under medical supervision. Even low-FODMAP should be guided. 

For those of the hyper subtype, wonder if norepinephrine-increasing foods are better avoided. Seems most of those are animal products like meat, and fortunately there are now many really healthy alternative protein sources (non-GM soy - e.g. tofu and tempeh, peas, beans, legumes, lentils, quinoa, seitan... etc, if people can access and consume them). Less expected sources, e.g. potatoes and avocados, contain a good amount of protein as well. Lacking protein is rare for those in the West. 

More studies are always needed. Wishing you well with your research @albertspa. 

[albertspa]

@MikeO Oh dang, EDKA doesn't sound fun, I'm sorry you had that experience. And yes, fasting is not something I would be aiming for anyway to relieve POTS symptoms. I'm not looking to lose weight. But since carbohydrates are said to be potential amplifiers for POTS symptoms, I suppose, some patients might resonate with an established diet plan that they can turn back to when it comes to recipes, which include that feature, such as the 'Ketogenic diet'. But yeah, I agree, I think being too restrictive might surely lead to some undesirable collateral damage. Thing is, it's easier to navigate it with some general silhouette in mind. Thanks for your insight!

@MomtoGiuliana Okay, so, so far your regiment corresponds to the general consensus. Is the potassium related to counteracting potential hypokalemia that might ensue from an adverse effect of fludrocortisone or is that generally part of your electrolyte combo for POTS to increase blood volume?

@Sarah Tee The reasoning seems perfectly sound, I'm curious to see where the research with the 'anti-GIP' might lead. Thanks for the explanation and the new references!

@Looking_for_light Yeah I was also surprised to see the 'DASH diet' mentioned in relation to POTS, due to the sodium reduction - seems counter-intuitive. Interesting proposition with the avoidance of norepinephrine-increasing foods for the hyperadrenergic subtype. That's an avenue I haven't considered yet, I'll look into it, thanks!

[MomtoGiuliana]

17 hours ago, albertspa said:

@MomtoGiuliana Okay, so, so far your regiment corresponds to the general consensus. Is the potassium related to counteracting potential hypokalemia that might ensue from an adverse effect of fludrocortisone or is that generally part of your electrolyte combo for POTS to increase blood volume?

High salt diet can deplete potassium.  Also for some reason when I am in a flare my potassium tends to go low.  Not sure why.

[Ginger_]

i don't eat a specific diet, just as many whole, minimally processed foods as possible.  I simply eat in moderation.  too much highly refined sugar like a smoothie made from the fruit purees have so much added sugar I know I can only drink part of it or I will have a higher HR.  Similarly, I avoid excess caffeine.  2 cups of caffeinated black tea is my limit unless it wasn't full strength.  even just 1 cup of coffee is so much more caffeine I feel terrible after having it

increased sodium and hydration of course.

its all about balance.

[Pistol]

2 hours ago, MomtoGiuliana said:

High salt diet can deplete potassium.  Also for some reason when I am in a flare my potassium tends to go low.  Not sure why.

@MomtoGiuliana just a thought - you mentioned that you also benefit from IV fluids for symptom flares. If the blood work gets drawn after the fluids were given it can "dilute" the blood to show an electrolyte imbalance when there really is not one. This has happened to me several times when in hospital - they gave me fluids and checked the electrolytes the next morning ( or same day after the infusion ) and the potassium level was low. Sometimes they would order potassium supplements for this. 

[MikeO]

2 hours ago, Pistol said:

If the blood work gets drawn after the fluids were given it can "dilute" the blood to show an electrolyte imbalance when there really is not one. This has happened to me several times when in hospital - they gave me fluids and checked the electrolytes the next morning ( or same day after the infusion ) and the potassium level was low.

Never seen this before "sorry" I have been in the ICU multiple times and they did the potassium drip (yes it is painful) even with a salty IV drip. I do get blood work done every 6 mo even with a experimental increase in salt uptake we have not seen a potassium drop. not saying this can't happen but this is why i like MyChart as we can lookup the data. 

[Pistol]

5 hours ago, MikeO said:

not saying this can't happen but this is why i like MyChart as we can lookup the data. 

This is where we could see the pattern for me, with the my chart! I can go back and see exactly when the IV was given and the before and after labwork. One doctor started me on oral potassium as a result of the infusions, and another time a different physician said that I do not need to take supplements because of the dilution, only a follow-up electrolyte panel ( which always turns out to be normal  a few days after infusions. )

[Sea otter]

@albertspa I found article on diet and fluids for POTS. Here is the link:

https://www.potsuk.org/managingpots/diet-and-fluids-2/

High protein, high calorie foods, full fat, sauces... Plus a lot of water and salt. I am aware we are supposed to eat like that because our body is "running marathons", but sometimes I am worried about possible consequences, like high cholesterol or kindey stones. 

 

 

 

[Looking_for_light]

@albertspa

The LIFE Diet

The Low Inflammatory Foods Everyday (LIFE) Diet lowers a blood marker for inflammation called C-reactive protein (CRP) and boosts heart health. Based on dark green, leafy vegetables, this whole-food, plant-based diet also raises your body’s levels of a substance called beta-carotene. Beta-carotene is anti-inflammatory and fights free radicals, which are linked to many diseases.

LIFE may reduce the risk or seriousness of heart disease and other chronic diseases that stem from inflammation. Inflammation is also a migraine trigger.

Dark green, leafy vegetables are at the heart of this diet. The body is good at getting the beta-carotene from these foods:

• Arugula
• Bok choy
• Broccoli
• Brussels sprouts
• Cabbage
• Cauliflower
• Collard greens
• Endive
• Kale
• Spinach
• Swiss chard

One to add to your list as it's an excellent piece of guidance - greens are great! Seeking to lower inflammation is a must for sufferers. The info is taken from - 

Can Plant-Based Diets Help Migraine? (webmd.com)

Migraine seems a common issue within the community so it should be really helpful : )   

 

[MomtoGiuliana]

On 9/26/2023 at 12:37 PM, Pistol said:

@MomtoGiuliana just a thought - you mentioned that you also benefit from IV fluids for symptom flares. If the blood work gets drawn after the fluids were given it can "dilute" the blood to show an electrolyte imbalance when there really is not one. This has happened to me several times when in hospital - they gave me fluids and checked the electrolytes the next morning ( or same day after the infusion ) and the potassium level was low. Sometimes they would order potassium supplements for this. 

Yes it is true that sometimes after IV fluids I have had it tested and it was low.  This happened while in hospital recovering from operation and they gave me potassium supplement.  I know the timing of the draws has varied over the years, and definitely have had slightly low readings without having had IV fluids. My specialist told me that overdoing salt can deplete potassium but he also said some people have borderline potassium anyway.   In any case, I have never had low K when feeling well.

[Sarah Tee]

By the way, I don’t have POTS, but I do have orthostatic symptoms and postprandial ones too.

I have found that eating a high-carbohydrate breakfast would often make me feel worse. So porridge is out, for instance. Other meals didn’t seem to matter either way, but I try to stick to lower carbohydrate intake for general health reasons.

A low-carbohydrate breakfast sadly didn’t make me feel normal, just “less worse” than porridge would!

Also, weirdly, fasting before a blood test or procedure would sometimes greatly reduce my symptoms for the whole day, even after I had had whatever it was done and eaten lunch. But I found this impossible to replicate consistently. On other days not having enough to eat or regular snacks would leave me feeling worse than usual.

So my diet pick is a low-carbohydrate breakfast followed by reasonably low carbohydrate intake for the rest of the day.

[albertspa]

@Ginger_ Yeah caffeine is another thing. Some report that it helps them with feeling more alert, while for others it worsens the symptoms quite consistently. I wonder if hyperadrenergic types might be more prone to that, due to the catecholamines.

@Sea otter Had it linked in my initial post already, but thanks for the contribution!

@Looking_for_light Oh, interesting, I'll add it to the list. Thanks!

@Sarah Tee Hm, curious that porridge would prove to be more beneficial to you than going totally low-carb 🤔 And about the fasting thing, I've had similar experiences actually.

[Looking_for_light]

@albertspa

Great that discussion on this important topic is ongoing!

Found a study and more info on the helpful-sounding portfolio plan for you - 

https://pubmed.ncbi.nlm.nih.gov/29807048

It's meant to offer a viable alternative to statins (which unfortunately reduce Q10 in the body and are known to cause side-effects such as musculoskeletal pain) for some. 

From https://easyhealthoptions.com/portfolio-diet-statin-alternative-lowers-cholesterol/ - 

'The Portfolio Diet is based around plant foods. If you typically eat 2,000 calories per day, here’s what the Portfolio Diet would look like for you:

• Plant protein (50 grams a day): tofu, soymilk, beans, lentils, tempeh, edamame, etc.
• Nuts (45 grams a day): walnuts, almonds, cashews, pecans, pistachios — basically, all of them, even peanuts. Nut butters count too.
• Viscous soluble fiber (20 grams a day): asparagus, oats, Brussel sprouts, barley, eggplant, okra, apples, berries, flaxseed, oranges, and psyllium.
• Plant sterols (2 grams a day): wheat germ, wheat bran, peanuts, olive oil, almonds, and Brussels sprouts. You can also get them in fortified foods or supplements'.

[Looking_for_light]

Foods said to be good sources of potassium - 

• Bananas, oranges, cantaloupe, honeydew, apricots, grapefruit, prunes, raisins, dates
• Potatoes, Swiss chard, boy choy, beetroot greens, spinach, broccoli, acorn squash, sweet potatoes, mushrooms, peas, tomatoes, cucumbers
• Chickpeas, lentils, peanuts, beans - including soybeans and lima beans

• 
  

[MikeO]

Foods seems to play out with folks with Dysautonomia or (POTS). From all that i have read is sugars can aggravate symptoms. Kinda makes me wonder why folks do better with a protein/low carb diet and some folks can handle the sugar uptake like a ORS drink.

Getting the right nutrition is crucial for all. My only suggestion is to watch the sugars and citric acid for folks with GI issues.

Said my peace as i have made progress with my issues.     

[Pistol]

5 hours ago, MikeO said:

Foods seems to play out with folks with Dysautonomia or perceived (POTS) which is just a symptom of a ANS issue.

@MikeO Could you please elaborate on this statement? I am not sure what you mean by "perceived (POTS)". POTS is a type of dysautonomia, it is not just a symptom - rather it is CLASSIFIED by a PATTERN of symptoms. I just would like to pinpoint what exactly you mean. 

[MikeO]

10 hours ago, Pistol said:

@MikeO Could you please elaborate on this statement? I am not sure what you mean by "perceived (POTS)". POTS is a type of dysautonomia, it is not just a symptom - rather it is CLASSIFIED by a PATTERN of symptoms. I just would like to pinpoint what exactly you mean. 

Figured this would get me in trouble. soo

Postural orthostatic tachycardia is a condition that causes your heart to beat faster than normal when you transition from sitting or lying down to standing up and yes i am leaving out the "S" the increase in heart rate upon standing is the symptom that will get one this diagnoses.

nOH is a drop in blood pressure without a compensatory increase in heart rate so this is the symptom that will get one this diagnoses. this really should be called nOHS

OH is what a drop in blood pressure with a normal heart rate response. should be called OHS?

All three of these examples have a pattern of symptoms that are similar but are defined by specific criteria. these three in most cases outside of medication induced hypotension are due to a autonomic dysfunction (blanket dysautonomia umbrella) 

I will retract my perceived statement but yet some of us will demonstrate Postural orthostatic tachycardia while being diagnosed with OH or more so with nOH as i have in the clinic demonstrated both Postural orthostatic tachycardia nOH. 

[albertspa]

4 hours ago, MikeO said:

the increase in heart rate upon standing is the symptom that will get one this diagnoses.

I mean to be fair, that's not the only inclusion criteria when it comes to POTS (presence of chronic symptoms of orthostatic intolerance that get worse with standing and better with recumbence) and the exclusion criteria (not having OH), differential diagnoses, as well as autonomic and laboratory tests are what reinforce the initial suspicion of a POTS diagnosis. Granted, people get misdiagnosed, and, secondary POTS, as well as underlying conditions, are a thing - but it's not like you can't distinguish between POTS and some other condition, if you thoroughly investigate it.

On 10/14/2023 at 11:22 PM, Looking_for_light said:

Found a study and more info on the helpful-sounding portfolio plan for you

Thanks! I tried the ketogenic diet for about 3 weeks and my average heartrate went up by 20-30 BPM, so I may take it slow with the diets for now, in order to not compromise the results for my medication trials, but I'll pin it in the blog and revisit it. 

22 hours ago, MikeO said:

Kinda makes me wonder why folks do better with a protein/low carb diet and some folks can handle the sugar uptake like a ORS drink.

Word!

[MikeO]

40 minutes ago, albertspa said:

Granted, people get misdiagnosed, and, secondary POTS, as well as underlying conditions, are a thing - but it's not like you can't distinguish between POTS and some other condition, if you thoroughly investigate it.

This is a valid point but in the US most of the diagnosis still comes the cardiology departments tilt table tests or just from a poor man orthostatics test and they tend to rely on the heart rate criteria. wish there were more testing clinics available for some of this but we are not that lucky. i am trying to get into one in Milwaukee (2 year wait).

here is a snip of a conversation of the STAT facebook page as to the ICD codes used in the US for POTS and CFS. hopefully these numbers will climb in the future and attract more providers just for the monetary aspect.

" the data i did have that represented ~60% of the US market is for calendar year 2022, where there were ~23k G90.A diagnoses, and ~9k G93.32 diagnoses. That's only for 3 months though, so hopefully 2023 shows a much larger number."     

[albertspa]

1 hour ago, MikeO said:

wish there were more testing clinics available for some of this but we are not that lucky. i am trying to get into one in Milwaukee (2 year wait)

Yeah I second that! The access to thorough testing is definitely subpar, and, despite living in Europe, where we have universal healthcare, I find myself having to pay out of pocket for most of the POTS related medical attention, both because our doctors are largely oblivious to the condition (requiring me to sift through the few specialists) and because the waiting lists are so packed. 😕 I even had to travel from Austria to Poland to find an affordable private clinic that does the HUT (tilt-table) test.