Cardiologist yesterday; Inappropriate Sinus Tachycardia

Went off to see the Prof yesterday. I did have a list of questions but didn’t get to ask any of them this time. However, he is going to see me in two months so I am hoping I can ask some questions then.

He has decided it isn’t POTS but is Inappropriate Sinus Tachycardia (IST). I’m sorry but the word “inappropriate” always makes me think of polite people saying someone else has been naughty – so I have a naughty heart.(David Goldstein in his book Adrenaline and the Inner World sees IST as part of the POTS family anyway cf. p 203)

tackyInterestingly the Prof thinks if I had POTS my pulse would frequently go over 126 and for the 24 hr ECG it only went as high as 126.  But he also commented about my high BP so I raised the question of hyperPots. I do still want this considered and norepineprine and dopamine measured if possible. (Got a nasty feeling this will entail an endocrinology appt and I can’t face yet another specialist)

I was under the impression that a standing pulse above 120 was pots but he thinks it would be much higher. The highest pulse I’ve ever recorded was 148 but it only gets that bad on truly bad days. (As far as symptoms are concerned I feel pretty yuk with a pulse at 115 and as my “resting” pulse hovers around 100 to 110 I feel yukky a lot)

So, for IST he has given me a drug called Ivabradine which I must start on low and work up. This is designed to treat angina and heart failure and should bring my tacky down. If you click on the link you’ll see it’s a recent discovery for the treatment of IST, so I’m pretty lucky because the Prof (bless’im) has obviously done his reading and is up to date on treatments.

He promises to keep at it with me ’til we crack this thing. I have to admit the lead up to the appointment I was getting nervous – which normally I don’t. But I so very much wanted him to be able to help me and I was afraid I was going to face one big “no show”.

Doctors always think that when results come back “clear” or worse still “inconclusive” that we should be so happy about it. But really patients who are very ill don’t want results showing nothing – they want an answer and a treatment.  Having a doc saying “Your ECG showed…whatever” and follows this up with “And here’s a drug/treatment that might help” are like little oasis in the long desert of chronic illness.

There’s still a number of things to work at; my BP for one and the astonishingly wacky pulse pressures I get; sometimes as low as 10 but often as high as 60 to 70.

I seriously believe – though I might be wrong – that if I can get a HR of less than 90 and a BP that is stable, even if it’s a bit high, I would feel so much better. I know this won’t be an overall cure, especially if I do have ME as dx but it has to be a start in the right direction – which after 10 years is a relief.

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6 responses to “Cardiologist yesterday; Inappropriate Sinus Tachycardia

  1. Wheeeeeee! That’s wonderful news, Shel! I” so glad you have some answers and someone who took your heart issues seriously enough to look at it critically and offer you some kind of help for your tacky heart :)

  2. The definition of POTS is a heart rate that increases 30 beats and/or above 120 bpm in the first ten minutes of standing. This is not up to what the doctor “thinks”. Experts around the world have worked 20+ years to reach this definition of POTS. Your doctor cannot just decide his own definition of POTS. IST would mean your pulse is always high (and it looks as though it is), but would not explain why it increases so much when you stand. You can have IST as well as POTS, it does not have to be one or the other. Dysautonomia is a cause of both POTS and IST, so it would make sense you have both. Anther cause of IST could also be the sinus node malfunctioning or having an abnormal structure.

    Hyperadrenergic POTS is the basic definition plus a high blood pressure. You’re right you need those hormones measured resting and after standing. It’s a pretty simple test I had done.

    I don’t understand why he thinks you don’t have POTS. I’m no doctor, but it seems to me you clearly have POTS as well as IST based on your heart rates…

    • D’you know Jackie I wondered about that. I’ve done three poor-man’s-pots tests and they all show a spike of +30 from lying down to over 120 within five minutes of being upright let alone ten and it hovers around that too. That’s why I asked for the referral.
      I was a bit thrown when he said 126 wasn’t high enough on a 24 hr ECG. After all POTS can vary and I’ve had days when it’s way worse than that.

      I will push for the tests for hyperPOTS because I am pretty sure that’s what is going on – or a combo hyper as my BP is so unstable.

      • I just logged back on to apologize if I came off as too aggressive, I just had 4 years of doctors who didn’t know enough about certain subject areas passing themselves off as knowledgeable, so it hits a nerve.

        In order to be officially diagnosed with the hyperandrenergic POTs, your doctor needs to confirm you fit the criteria for heart rate and blood pressure increase (typically tilt table, but technically could be done in office I suppose) and also that your hormone respond accordingly. Really, all you need is the tilt table confirming you have POTS. Then, if you just wanted to know you could pursue if it is neurological or hyperandrenergic.

        IST would totally explain why even your resting heart rate is so high, but nowhere in the explanation and diagnostic criteria for IST, does it include an increase in heart rate with standing. What is his explanation for this other than POTS? POTS is not diagnosed solely with holter monitors/24 hour EKGs. It helps rule out other heart issues as an explanation for the strange heart rate. It can give the doctor an idea of your range of heart rates through a normal day, and certainly they are looking for a high heart rate, but it does not diagnose POTS. It can identify palpitations and sinus tachycardia and all that good stuff… The only way to check for POTS is to see if your heart rate increases 30 beats and/or above 120 with a tilt table test. My max heart rate with the holter monitor was in the 120s, and the experts at Mayo Clinic who named the disease and have researched for 20 years confirmed I indeed have POTS. The heart rate on the holter monitor doesn’t identify what I was doing when I achieved a given heart rate… Your doctor clearly isn’t up on his research at all.

        Perhaps a nurse in office could take your pulse after you lay flat for a minute or two, then take it every few minutes while you stand to show the doctor the rapid increase that occurs.

        – end rant

      • No need to apologise Jackie. This is important stuff. The Prof is supposed to be a specialist in POTS but I realised he wasn’t sure about hyperPots when I mentioned it.
        I was only in there a few minutes – it’s a right production line, in – decision- out.
        I think next time I will have to put my foot down and have my questions answered, particularly as I’m quite sure I had a nasty TIA last month.

      • I would flat ask why he isn’t following the clinical definition of POTS and what he suggests the reason for the increase in heart rate with standing is caused by, because IST causes increased heart rate period, not increased heart rate with standing…Keep us up to date!

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