POTS and ADHD

[legalseagull]

I've got a blood test booked in for this week. I didn't ask for it but the GP was concerned about my low blood pressure. I explained that my BP has always been low(ish) and it's normal for me.

I also mentioned that I get head rushes on standing (vision goes dark and I have to dip my head to return to normal).

Since puberty (30 years ago!) I've always been the same. I can't stand for long. I'm fine walking around or dancing, but if I stand still I will faint. I have to sit on the floor at festivals or find a chair in pubs. If I stay standing I will start to black out, feel my heart beating and be out of breath. If I don't sit, I'll fall.

I've come across POTS and done the ten minute stand test at home. I did it a couple of days apart to make sure it wasn't a one off. My BP stayed roughly the same after an initial drop, but my HR jumped up from 80 whilst laying down, to 156 after 10 minutes of standing still. An increase of 76. (table showing results attached)

interestingly POTs is also linked to IBS, which I have been diagnosed with.

My concern is whether to tell the GP this.

I am auDHD and take Lizdexamfetamine. Lizdex can increase BP so you have to provide this information when getting repeat prescriptions - It's never affected my BP or HR and an increase in BP would actually be helpful for me!

I'm worried the GP's, who are for the most part not experts in ADHD meds, will panic and stop my meds - even though i've had these same symptoms for 30 years before even starting the Lizdex.

Is there any benefit in the POTS diagnosis? I don't think there's any treatment available?

There is no treatment for POTS. Lifestyle changes can help with symptoms- increase salt levels, wear compression socks, plenty of fluids, certain types of exercise can be beneficial. There are a few drugs that can help, but unlikely that a gp would prescribe them - need to see a consultant. There is some decent info on websites.
https://www.potsuk.org/
my Dd was diagnosed with POTS - probably caused by glandular fever. Coincidentally just got back from seeing her consultant!

Thank you. So perhaps not worth the doagnosis - although I suppose it rules out other issues. How was your DD tested? Tilt table?

Thank you for the website link, it’s very helpful!

Yes, tilt table. She also had a high ectopic beats burden which was increasing despite medication and had a cardiac ablation in August of this year. She was fitted with another monitor today to check that her ectopics have reduced and we should get feedback from the consultant in three weeks.

in my DD’s experience one of the most challenging issues is lack of awareness within the medical profession. She now has a GP who is supportive, it did spend quite a lot of time telling GPs that no it was not stress and there was definitely something wrong!