Disclaimer: I am not a medical professional. I can only speak to my own experience and hope that gives you some insight into what POTS is and how it can affect you or the people around you.

Stomach problems

POTS is different in everyone and I can only speak to my own experiences. I have listed out all of the symptoms that people with POTS commonly struggle with on my POTS overview page but below is my own experience with my stomach problems.

My stomach problems, which is mainly constant nausea, was actually my first symptom (according to my mother). At the time, I was coming out of a terrible case of pneumonia so at the time we were unsure if it was going to be a persistent problem. I also did not have my POTS diagnosis yet and I don’t believe I had many other symptoms at the time. I was always sick to my stomach though.

Nausea

What it feels like: A constant low nausea that gets worse throughout the day. Think about how your stomach feels when you’re hungover.

For me, I just have a low level of nausea all day everyday. It is exacerbated at different times during the day, sometimes for a reason and others for seemingly no reason. I was and am very cautious about what I eat. It felt and often still feels that every bite I take is going to make me nauseous and miserable for hours. At the very worst of it, I would say between the ages of 11-18 it was torture to sit at a table and eat. It was an absolute battle everyday between my parents and I to get me to eat, something, anything at most points. So many dinners with my parents started with a healthy dinner then devolved into bites of ice cream because that was all I was willing to eat.

I started seeing a GI when I was 16, 5 years after diagnosis. I’m not sure why it took so long but it really changed my life. They ran a bunch of tests and discovered that my stomach was essentially always in a state of digestion which meant that my acid levels were very high at all times which was causing the nausea. Once I was able to get on medication (Pantoprazole) I was finally able to calm the nausea and eat. That’s when I discovered I actually liked the taste of food because I could enjoy it without too much fear of getting sick.

No hunger? Not feeling full?

What it feels like: I haven’t felt hunger or full in so long I really couldn’t tell you. I imagine it’s just like being full but with nausea.

I never feel hungry and I also never feel full. Yup, it’s weird. I was told that it was because my stomach was in a constant state of digestion, I was also told there was a disconnect from my brain to my stomach. For years, almost 7! I was hardly eating and always nauseous so when I was finally not nauseous I discovered I couldn’t feel full…what??? Totally normal. Yeah. So between not feeling hunger and never feeling full how do I figure out when to eat and when to stop? Well that lovely nausea tells me when to stop eating. As for when to start, it depends. Let me tell you I am the champion of accidental intermittent fasting. Honestly when I start to feel shaky and weak that’s when I know to eat. Mostly though I eat when others eat, if I’m home alone all day I set alarms.

Anorexia?

Did you know there are 2 forms of anorexia? Anorexia nervosa is a very serious mental health condition. This is not what I’m talking about at all. Anorexia is a medical term that really only means loss of appetite which in my case was coming from nausea coupled with the gag coupled with not feeling hungry. This being on my medical records did not do me any favors when it came to getting the school to provide tutoring. They used that diagnosis to say it was a mental disorder keeping me from going into the building rather than a medical condition.

Solutions to the Nausea

Small meals are key but make sure you are getting enough nutrients with each meal, talk to a nutritionist to make sure you’re getting everything you need. Even dividing a meal in half is a good idea. I generally eat every 2 hours.

Sitting or laying down helps, your body is fighting you the second you stand so trying to eat standing is even worse. Now you’re nauseous, dizzy, and weak so overall a great combo. My suggestion is to always eat sitting or laying down.

Eating slowly but not too slowly can help. I find that if I eat slow enough for the nausea to catch up it’s worse but if I eat too fast then the nausea is worse after. So it’s a perfect balance. When I’m really sick to my stomach, it can take me hours to eat. A small cup of dry cheerios can take 2 hours. Those days I have no advice and slow or fast doesn’t help much.

Medications

There are several different types of stomach medications you can take to help. Over the counter has plenty so you might want to start there.

Over the Counter

Prilosec OTC is a form of omeprazole at 20mg. This might work well for you and for the most part you will need to start here to get your insurance to accept all of the other medications that you might need. There is a risk of stomach cancer with long term use of this class of drugs.

Pepcid is famotidine for 20mg. I find this good for quick relief mostly after meals.

Tums is an antacid. I don’t think they work all that well but they don’t taste horrible and they’re a cheap placebo.

Prescriptions

Dexlansoprazole (Dexilant) did not work well for me but they might for you.

Esomeprazole (Nexium) was okay but not enough all day.

Omeprazole in prescription form can have higher strengths. I found that even on 80mg, it wasn’t enough for me.

Pantoprazole (Protonix) worked amazing for me. I was on 60mg, at the most, and it was what made me be able to eat and finally gain weight. I was on it for about 5 years and even now I take it sometimes when my stomach is bad for a while. One thing I have to say is it did hurt my joints and is connected to joint pain. I find that even if I take it for just a week the joint pain can be bad.

Constipation 

I always associate constipation with how little I eat. I find that it comes when I am not eating a lot and is fine when I am eating fine. Managing this can be as simple as drink some apple juice when it’s bad or eating more.

Gag

This falls more under esophageal dysfunction than stomach problems but I feel like it falls under eat and stomach that needs it’s own page. I very rarely know when I am going to gag but often if it happens it is going to keep happening and I will not be able to eat food during that meal.

Solutions

I find that when it’s bad, cold food works better, so I over take whatever I’m eating and put it in the fridge for a few minutes. If I really can’t get anything down I find that ice cream or a milkshake can be a good source of calories and filling for a meal substitute.  

Regurgitation

This is one of my biggest problems when I am very nauseous. Almost daily, I throw up in my mouth, several times throughout the day. I have no solutions for this and no tricks but if you have any let me know! I was told by my dentist to use mouthwash after these times rather than brushing my teeth as there is a lot of acid in the bile and it is not a good idea to then scrape the enamel with a toothbrush. 

If you want to learn more about my weight gain story click here.

Solutions I’ve Found

I find small and frequent meals work best for the nausea and they help me to keep on track with eating.

Further Reading

“Gastrointestinal Symptoms in Postural Tachycardia Syndrome: a Systematic Review.” NCBI, 16 March 2018, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6314490/. Accessed 25 March 2023.

Nicholson, Lorna, et al. “Symptoms.” PoTS UK, https://www.potsuk.org/about-pots/symptoms/. Accessed 25 March 2023.

“Postural Orthostatic Tachycardia Syndrome (POTS).” Johns Hopkins Medicine, https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots. Accessed 25 March 2023.

“Symptoms of POTS Syndrome Explained • MyHeart.” MyHeart, https://myheart.net/pots-syndrome/pots-symptoms-signs/. Accessed 25 March 2023.