Awaiting the Cardiologist POTS specialist. My personal PoTS approach.

http://www.dysautonomiaprison.com with thanks to Jane for her

hard work.

I have recieved a tentive dx of POTS from my GP after I showed him the results of two Poor Man’s PoTS tests and two days of BP and pulse. It does seem pretty clear that’s what’s going on. I discovered that not only does my pulse dip nicely to around 88 when I’m lying down, but that if I sit still just reading with the kids for more than an hour I can get it to around 88 to 91.Usually my seated pulse is 100.From lying down to standing up my pulse went from 88 to 120 on the second test which is over the 30 bpm threshold so that indicates Postural Orthostatic Tachycardia Syndrome. PoTS is a posh medical way of saying my heart objects strenuously to me standing up.

While I await my appointment with a cardiologist who knows about PoTS I have a system for trying to keep on top of it.

I have a little pulse oxymetre which shows my pulse and oxygen saturation. Once my pulse goes beyond 125 I will sit down until it’s dropped back to 100. I’ll also stop working upright if my SATS drop to under 93. Once my pulse goes over 125 the nausea is harder to ignore, my balance is much worse, and I tend to black out. Not everyone with PoTS faints. In fact most don’t. Those who do tend to have NMH as well. That is Neurally Mediated Hypotension – so their blood pressure drops dramatically.

I seem to have the opposide problem. I have hypertension but not consistently. My BP is shambolic frankly. At times the pulse pressure is very narrow.

I get the pooling in my legs, especially at the back of my legs for some reason, and have a rather unlovely POTS rash. Marvellous.  It is wise to keep your legs elevated when sitting, and I know I need to get into the habit of doing this.

So, standing up for any length of time is very difficult. Being stood up for half an hour for the “test” was pretty horrible, but I did it in the name of science – and getting a proper dx.

Research paper Hyeradrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders which may link in nicely with this piece of research.

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2 responses to “Awaiting the Cardiologist POTS specialist. My personal PoTS approach.

  1. You are similar to me. I get the HR increase but because I start to get severe symptoms at even 110 cardios don’t rate it. IT can go to 135 if i do it at home but once i get to an appointment i have been high for a while and i am symptomatic. I have tremors and seizure like episodes or just collapse. I have to go flat and live most of me life on the couch.

    • Vee, a cadio who doesn’t rate symptoms at 110 doesn’t know his job. There are studies that show those of us with dx of ME as well as POTs get more serious symtoms at lower heartrates. So you have a bad time at 110 sounds like you are really not well.
      I am stunned by how doctors can dismiss that for so many people !
      I am so sorry you are not being listened to. I wish medics would try and understand what this takes away from us.
      I too have tremors and seizures – it’s pretty yuk isn’t it.
      God bless

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