When you finally get a POTS diagnosis, it really does not mean anything. Sure it is nice to have a label to tell your friends and family, but you still have no idea what is really wrong. POTS is only a syndrome. By definition, syndromes are only a collection of SYMPTOMS that occur together.
In this case it is the increase in heart rate upon standing. Any other symptoms need to be investigated as if it is another condition all together. When you start lumping all of your symptoms together with POTS you start to lose sight of your health. I have seen so many POTS patients make a post on dinet asking about a symptom. Then a few members will come in and say that they also have that symptom and it is just POTS and they will have to deal with it as a POTSy. That pisses me off so much. STOP DOING THAT! Rather than just throw your hands up in the air and give up "because it is just POTS", these types of things need further investigated. This is the only way we will be able to recover from POTS.
Sadly, POTS has become a scapegoat for all sorts of symptoms that have absolutely nothing to do with POTS. POTS patients likely have underlying/undiagnosed conditions, but doctors and patients are not taking the time to uncover them. Many POTS patients suffer from a list of symptoms a mile long and they justify suffering from these because they believe it is dysautonomia. The reason I don't believe all of these symptoms are POTS related is because over the years I have improved my health through other means. If it were truly dysautonomia, then there would be no way of fixing any of these issues.
I found this interesting study that showed a new onset of orthostatic intolerance in people who had bariatric surgery. These people never had any symptoms of POTS before their surgery and then approximately ~5 months after they did, this is pretty significant. The study should have went further to see why exactly this occurred. Obviously our stomach and digestion plays a huge role in autonomic function. I think this study shows at least some type of correlation there.
Interestingly enough, nearly all POTSy have severe issues with their digestion. Often times it is dysmotility and doctors say this is caused by dysautonomia because the muscles in the intestine cannot contract enough. Maybe it is, but the one thing I know is blaming every single symptom on POTS or dysautonomia is a sure way to keep us all sick. What an easy way to push patients aside and move on to the next one.
I believe diet is a major aspect POTS patients need to start paying more attention to! If you have digestive issues, then this needs further investigated and not simply assumed it is "just POTS". Do you have food allergies, sensitivities, Celiac disease, gluten intolerance, lactose intolerance? Even if a doctor has tested you for Celiac through blood tests, it does not necessarily mean you don't have it. Genetic testing is a good way to role in or role out Celiac Disease.
I still have some gut issues, but over the years they have been much better. I used to have very hard stools as a child and it was so painful going to the bathroom. UGH! I dreaded having to make a bowl movement. Then at other times, it was just diarrhea. UGH! I was in this vicious cycle as a child. I had daily stomach aches with bloating, gas and felt nauseous at times . I had no idea what was wrong with me and doctors did not care.
Nearly all of those issues have been resolve by cleaning up my diet. I have been tested for food allergies and sensitivities. Completely avoiding foods that show a high immune response is necessary. If I ate the typical American diet of fast food, MSG, artificial sweeteners and other processed crud, I'd be extremely sick too. Since POTSy have a hard time standing in the kitchen, their diets become quick to fix meals that are full of preservatives and potential food allergies too.
Recently I have been adding back in more foods to see how I react. My digestion is not perfect but compared to what most POTsy suffer from on a daily basis I do very well. My main problem is loose stools in the morning, but it can be relieved with some added fiber. I do not suffer from heart burn, stomach aches, constipation, bloating or gas. If I eat something my body does not agree with (dairy) then I will get sick and it can last for a few days. Those of you who are sick all the time, start investigating this rather than brush if off as "POTS" or dysautonomia.
You are only keeping yourself sick if you do nothing.
There are many other symptoms that patients contribute to POTS such as headaches, rashes, chest pains, nausea, brain fog, frequent urination, depression, muscle pain etc etc. Stop it. Start looking into alternative causes/underlying issues for these symptoms and begin investigating.
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