There’s nothing wrong with me except that there is?

[BingeBitch]

can anyone offer advice please?

3 months ago my BP kept rising without explanation to 200/90. GP put me on Amlodipine 5mg daily. 6 weeks ago my BP suddenly dropped to 90/60 and now fluctuating between 127/80 and 100/54 I have now been told to stop taking Amlodipine and have been off it for 6 days.
When my diastolic reading is low (between 50 and 60) I feel very unwell. Nausea, body aches, woozy/dizzy, feel like I’m walking through treacle and could pass out at the drop of hat (I don’t though). All
of my blood tests show there is nothing wrong with me. Thyroid is fine, hormone levels are fine, blood count is fine etc extensive blood tests all come back absolutely fine. Periods normal, cycle normal.

This feeling comes over me for about 24 hours 3-4 times a month. It’s causing me to miss work because I’m not safe around the children (nursery) I’m at a loss and my GP just wants to monitor my symptoms for now. I can’t keep missing work, I’m so down about it but my GP says nothing they can do because bloods are normal. Any advice greatly received. Thank you.

Is there no interest in checking your heart? You don't say how old you are, but to be honest nothing precludes young people from having heart issues either. I'd be pushing for sure.

My brother had something similar, it was something to do with his heart, he has just had an minor, (in & out of hospital the same day) intervention to correct it

Sorry yes, I forgot to mention I have been referred to a cardiologist but won’t be seen until August.

And I’m 39

are you monitoring it at home? I would prepare for the cardiology appointment by keeping a weeks worth diary of symptoms and readings (AM, PM, sitting and then standing, after eating, after exercise, any time you feel symptomatic).

What is your heart rate doing when you have these instances of varying BP?

I have a condition called POTS which is a form of autonomic system dysfunction, it causes many symptoms but my BP and heart rate fluctuate wildly, particularly when I am standing. Most often I will have a very low BP which makes me feel awful, and a very high heart rate. I'm currently trialling medications to lower the HR and raise the BP but these things are never without their own side effects.

You could ask the GP surgery to arrange an ECG and a 24 hour blood pressure/24 hour heart rate monitor ahead of your cardiology appointment, it would save an awful lot of waiting.

@dontgobaconmyheart thank you, that’s very helpful.
I am only checking my BP when I feel ‘funny’ haven’t paid much attention to my heart rate but I will from now on. I had an ecg 2-3 months ago which was normal do you think it’s worth getting another so soon ?

I think the GP would be reluctant to repeat it if it's been done so recently and is normal but no harm in asking if it would reassure you. Cardiology will likely arrange their own if they need one, I was just thinking it would expedite the process if you'd not already had it.

My ECG is usually normal, POTS can't be diagnosed from one but they are excellent for ruling out other more urgent cardiac issues. My symptoms and readings vary wildly on different days so the best thing you can do in that situation is document extremes of low or high BP or heart rate yourself and show the cardiologist when you go -eg a diary, or snap photos of the readings if they seem concerning.

I use a finger oximeter for a quick heart rate reading if I need one. They're quite good for checking what (if anything) happens when you stand up from sitting for example. Then a BP cuff if I'm very concerned and need to know if I need to take action to get my BP up. Try not to over check things or have it take over the day but it's a useful tool if you're trying to get answers or advocate for yourself at medical appointments.

I also had very low BP when my b12 levels were very low but if your blood were normal then that's reassuring.

It is a truly horrible feeling. The only advice I have is to try to learn to feel when it's coming and take a seat, stay very well hydrated (try something with electroluytes such as coconut water) or try lying down on with your legs up against the wall for a few minutes. Not possible in public obviously.

Hopefully cardiology can help but I would also say it takes time to adjust on and off medications. Things may level out as the weeks pass but keep the appointment regardless.

@dontgobaconmyheart thank you so much, your insight has been very helpful. I will start a diary and try and keep track of things in the lead up to cardiology. You’re so right it does feel awful when it’s happen. Thankfully I haven’t fainted so far but the fear is always there.