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.