Does treatment mask POTS heart rate increase?

[AmysMum]

Hi there. My 13 year old daughter has been having a lot of symptoms since the beginning of the year which are collectively so bad that she is barely at school right now. Constant lower abdominal pain, headaches, arm & leg pain/heaviness, inability to get to and stay asleep, nausea, brain fog, dizziness, constipation, early satiety, acid reflux, urinary retention. She has had many, many tests which have indicated nothing. She has a cranial and abdominal MRI booked for tomorrow.  The GI consultant we are seeing is starting to talk about it being psychosomatic. I am sure it is not.

I have been reading a lot about POTS recently (this is such a great forum btw!), and over the weekend did the poor man's tilt table test. In my eyes she "passed" with flying colours - i.e. heart rate increased greatly when standing, only decreased when she sat down. She cannot sense this change at all.

I now have to persuade the consultant that he needs to look at this again. I want either him or someone who actually knows something about POTS to do some proper tests.

My question is this: while we are waiting, should I start some of the DIY/home remedy treatments for POTS - raising the head of her bed, increasing salt and fluid intake etc?  What is the "danger" that these could improve her situation so that by the time she gets to a tilt table her heart rate might not change so dramatically?  I don't understand how POTS works.  I realise it's not curable, as such.  If you improve the symptoms, does the heart rate behaviour improve too? Or is the heart rate always the same regardless of how you feel?

Clearly I want to make her feel better as soon as I possibly can. But it's also really important to get an accurate diagnosis. I'd be so grateful for advice!  Thanks!

PS. Based in the UK, just outside London.

[JohnnyRocket244]

There are actually some conditions that have been strongly associated with POTS. I have one of them called May-Thurner Syndrome (Left Iliac Vein Compression) and the other one is Nutcracker Syndrome (Left Renal Vein Compression). Either one of these conditions can cause every symptom that your daughter has. Basically the theory is that when standing up there is an increase in blood flow. When blood flow reaches these compression sites, it is blocked and the heart has to pump much faster to get the blood around these compression areas. From there, blood flows into a web of collateral veins. It's these collateral veins that then cause many other problems throughout the rest of the body. There's actually a German doctor that talks extensively about these 2 conditions and the many problems that most doctors are unaware of. Messsge me if you would like some more info.

[DominantJean]

I'm going through the same thing with my 12 year old daughter now. I only heard about Pots about 2 weeks ago when I was describing her symptoms to a friend. I did have her add salt and electrolyte water to her diet since it's only suppose to manage her symptoms temporarily. I was a little worried it would mess up the tests, too, but whenever I tested her heart rate at home it was still high (resting and standing) despite the extra salty snacks.  We saw the cardiologist today. They didn't have a tilt table, but they tested her heart rate while lying (116) and then after standing (155). The doctor was still hesitant to call it Pots. He seems to think it has to do with hormonal changes and rapid growth and it could pass. I would like to believe that but my daughter has been getting progressively worse over the last few years to the point where she's asked to stop all outside activities. She is due to see other doctors about thyroid and metabolism, and the cardiologist wants to run more bloods and an echocardiogram. I am happy to try all these things to find an underlying cause. But I'm not sure she will ever get a Pots diagnosis despite 'passing' the poor man's test. I am looking into the other things that might help her now, like compression stockings.

I'm sorry im not a medical person that can help you more with your question, but good luck with your appointments and please let me know how it goes.