Sorry, the thread disappeared of my convos. Massive catch up post:
@Perry13 They have now put that webinar on their YouTube channel .
Re the Ivabradine. It depends on the dose really. Sudden HR drops are very unlikely to be related to it, as it only really adjusts HR by roughly 10 bpm. Most of us find, even on higher doses, that it just tops off the tachycardia, but helps a lot with symptoms.
It could be you are having occasional ectopic beats, which would be nothing to worry about. You can get what looks like a sudden drop in HR with that, as there are two beats close together, then a longer than usual pause and then a stronger next beat. Dr Gupta, York Cardiology has a YouTube video about it, which explains them really well and is very reassuring. I get runs of them and my watch goes bonkers, jumping high and low, as it can’t work out what’s going on. Definitely mention it to your doctor though, as you should keep them informed of any changes. If you have a finger oximeter which shows the wave pattern of your hr you can see them happening. It’s quite useful to video them, as it was easy for my Cardiologist to reassure me that’s what they were when he’d seen the videos.
I had the usual visual side effects, sparkles, peripheral distortion and a pretty light show when going from dark to light and vice versa, but they ease the longer you take it for and I rarely notice any now. Most people tolerate Ivabradine very well, but there is a small cohort that just don’t seem to be able to cope with it. I think iirc, it makes them really exhausted and then generally just feel dreadful on it.
I started on the lowest dose two weeks before our family’s summer holiday and definitely noticed I coped a little better - although maybe a little too well, as I broke my ankle on the beach in the second week! Nothing dramatic, just a feeling of being able to be upright a little longer and being slightly less tired. The kids said I was more fun than usual! 
I have been slowly titrated up over the years and am now on the highest dose, which unfortunately since peri-menopause hit, is not really helping enough anymore. They are now considering adding in a second medication, but I am not keen on taking Fludrocortisone and the won’t give me Midodrine because I have complex Migraine, although I know other with CM that do take it, so I am going to see if they will let me trial it.
@CausingChaos2, you should be lying quietly, no speaking etc for at least 10 minutes before standing, best practice is 30 minutes. Although, realistically, neither tends to happen at a doctors appointments!
The GP I saw initially didn’t lie me down at all. I think she nearly fainted herself when she saw my HR go from 68 to 130 and continue creeping upwards when I stood up! My TTT results were less dramatic, but consistent, in that I think I went from 80 (started higher as we had a long stressful drive to get there and then had to rush from one side of the hospital to the other) increasing to 148 slowly over 10 minutes. Standing test in the consultant’s office at my first appointment was 68-113.
I would actually get an at home BP monitor and use that for your AST. Take it after you’ve been lying resting, again immediately on standing, then at 2, 5 and 10 minutes (if you last that long - I never have, which is why it was weird I didn’t faint on my TTT). Most doctors will want to know what your BP is doing as well as your HR so it makes things simpler.
Some people with PoTS have increased BP, some have stable and some will still get a drop, which some doctors will argue means it’s not PoTS it’s Orthostatic Hypotension, but it is still PoTS, as long as you still have the sustained HR increase. Current advice is that having OH does not exclude having PoTS and they can exist together. Personally, my BP shoots up initially and then stabilises, whereas my son’s BP stays stable throughout. I do get BP drops, rather embarrassingly only when I’m on the toilet and have fainted quite a few times when I was on there, which apparently is called Micturition Syncope and caused by sudden vasodilation - hence them pushing me to try Fludro to increase my blood volume.
Whatever you do, don’t get obsessed with checking your numbers. If you keep doing and redoing your AST and checking your hr throughout the day you will drive yourself nuts. It’s a variable condition and even the experts say someone not every check will show clear cut PoTS readings, as so many things can influence it. Pick a day, take one first thing before/when you get up, one mid-afternoon and one in the evening. Do that maybe three to four different days across a month and leave the monitors alone the rest of the time. It’s a good idea to get a pre-menstrual reading in there if you can, as most of us are worse when pre-menstrual and/or during our totm.