Does anyone have very high heart rate?

[Paytonchill]

So I’ve been newly diagnosed with POTS, and Im still working on getting medicated so I’ve pretty much just been suffering through this. I’ve been told my pots is episodal which I haven’t seen 1 post about someone else with a similar issue. One day my heart rate is almost normal and the next if I walk around it’s in the 180s so all of my doctors are apprehensive about medicating me when sometimes my heart rate resting is around 55, but on my bad days my heart rate will go above 200 which really has me worried (and my doctors). I remember the first time my doctor looked and saw my heart rate was 217 ( I have a watch that records my heart rate) she looked at me and goes “that’s to high that shouldn’t sustain life what we’re you doing we’re you working out” (I was walking and I felt more winded then normal” I’ve been told to take it easy keep my stress low drink water eat salt.I’m just wondering if anyone else has experienced this and has any tips or suggestions for me, as I’m said I’ve just been thrown into this and most of my doctors don’t know what to tell me. I know that it takes awhile to find the right medications and I’ve read a lot about pots and I’m trying to learn as much as I’ve can. My symptoms are only worsening and I’m hoping you guys can give me some insight. ( also sorry for the horrible grammar this brain fog is annoying)

[vepa]

My POTS was episodic for a good chunk of my teenage years, which is part of why I never got diagnosed at that age. It became a lot more constant as I got older though.

I suppose if drugs don't work in your situation you could talk to your doctors about a pacemaker? My doctor suggested one for me, because all the heart rate drugs lower my already super low blood pressure. But I said not yet. Above 200 really is pretty high, so you're right to be concerned. 

[Guest ANCY]

I don't really have episodes, I seem to just alternate through Diffrent symptoms or problems.  I have had them at a quandary of what to do before with highs and lows. It can be very hard to treat, if possible at all. I was on ivabradine for a couple months which helped, but some days it dropped me too low so I was supposed to monitor that.

Last week we found out that I'm having random HIGH Tachy episodes, most recent they told me about was 170 at 2:30 in the morning. I used to deal with going up into the 200-230s frequently but had a change after a concussion, which led to a pacemaker. (Long story) Mine is a rate response so it will sense changes and try to adapt or compensate for the problem. Mine can attempt to pace me down although it doesn't always work. (I don't have an ICD just a PM.)

Don't know if any of that was helpful...

[yogini]

I would start by counting your pulse by hand because often these watches can be inaccurate.  For example any electronics in the room can interfere with the heart rate watch.

I think most people with POTS have sinus tachycardia, which means our heart rhythm is normal but the rate is fast, usually under 150 bpm.  The high heart rates can sometimes mean supra ventricular tachycardia, which is a different type of tachycardia which also can affect heart rhythm.  The heart rates are often higher for SVT.

Ask your doctor which type you have and then do some research online.  It is of course up to your doctor but with these types of HR I am surprised a doctor would not offer some kind of treatment.  I would also think about getting a second opinion - maybe you want to see a specialist listed on the DINET site.

 

Edited October 10, 2017 by yogini