New member - IST and possible POTS

[Super_tachy_1]

Hi everyone!  

I just signed up and wanted to introduce myself.  I'm a 46 year old female who has had issues with an overly fast and extra-reactive heart rate after having a radiofrequency catheter ablation for an atrial tachycardia (a less common type of SVT) 6 months ago.  I was just diagnosed yesterday with Inappropriate Sinus Tachycardia by the EP who did the ablation.  I mentioned that I would like to be tested for POTS as well since my heart rate goes up around 35 bpm when standing (I don't have EDS, but I definitely don't have the greatest leg veins and I have some blood pooling going on...I may have been very mildly POTS-like before all this now that I think about it), so I have a tilt table test scheduled in early January.

I have been in denial that this may be permanent until recently, as I kept thinking my body just needed to heal from the procedure.  But now I personally believe that some of the autonomic nerves in my heart were destroyed by the burning of the ablation, creating an imbalance (excessive sympathetic and/or deficient parasympathetic) - and I am no longer confident that the situation will rectify itself.  I'm physically pretty functional, but feel much more limited than before since I can't push myself to previously normal limits and have to watch how much exertion I have - also, my life has been turned upside down since I'm now having excessive tachycardia with not only walking around, small stress etc. but also strong responses to certain foods and alcohol, which was never a problem for me before.  As food and wine used to be a major part of my life, I find myself now depressed and isolating myself from my friends, plus I felt I had to break things off with a romantic relationship I had been in because of this.  The anxiety of having heart issues both before and after the ablation took its toll and I ended up moving back in with my parents to help alleviate the health anxiety of living alone (Im not married and have no kids).  I'm fortunate that my job has been flexible in allowing me to work from home a lot.  But needless to say, I really want my old life back!

I have tried diltiazem but wasn't crazy about it (may not have given it a fair shot though) but after my EP appt yesterday, I was prescribed metoprolol, which I haven't taken yet, and am admittedly a little nervous about.  I was also given the option of trying ivabradine, which I may ask to try instead of the metoprolol - we'll see.  I am trying to research and implement other things that may help as well like deep breathing exercises to strengthen the parasympathetic/vagus nerve - I figure it definitely can't hurt!!  I just need to stick with some of these new things, which I am not always great at doing.

Well, anyway, thanks for reading my saga, sorry for such a long post lol.  I have been lurking the boards for a couple of months while trying to figure all this out, but now that it's official, I figured I would sign up and contribute.  Thanks to everyone for sharing their experiences - many of your posts have been very helpful to me in understanding and coping with this craziness - and not feeling so alone  

[Pistol]

@Super_tachy_1 - welcome to the forum!!! I am sorry about all of your issues. First of all: anxiety and depression can be a symptom in themselves but can also be caused by dysautonomia. In my case it was a result of having to deal with a chronic and disabling illness (hyperadrenergic POTS). And just to ease your mind - many people with POTS are NOT disabled and live a relatively active life. If anxiety and depression impact your social life and relationships it may be a good idea to bring it up to your physician. I greatly improved after taking SSRI, which is also recommended and frequently used in the treatment of POTS. 

You said your EP prescribed Metoprolol - that is often a first step BB in treatment of tachycardia and many POTS sufferers improve while on it. I understand being scared to take new meds, especially since we are often very sensitive to even the smallest doses of meds. However - if it was prescribed to you it should be safe. It might make you tired for the first few weeks but that often gets better. 

You mention you tried Diltiazem but where not crazy about it - what were the effects that you did not like? In my case I take many cardiac drugs including BB and Diltiazem and it is one of the most helpful meds I take. 

I also wanted to ask if you follow the usual POTS treatments of increasing water and salt intake and compression hose? Especially since you mention you have some blood pooling in your legs - compression could really help for that. Your EP can prescribe the right compression and you can get measured for the right fit at any medical supply store. 

Here are a few posts from our informational site that may be interesting for you: 

There is much more information that may apply to you under informational resources of this site. I hope you TTT goes well, don.t be afraid to take the medications your physicians prescribes. We will not know what helps if we do not try!!!! Best of luck - and keep us updated!!!

[Super_tachy_1]

11 hours ago, Pistol said:

@Super_tachy_1 - welcome to the forum!!! I am sorry about all of your issues. First of all: anxiety and depression can be a symptom in themselves but can also be caused by dysautonomia. In my case it was a result of having to deal with a chronic and disabling illness (hyperadrenergic POTS). And just to ease your mind - many people with POTS are NOT disabled and live a relatively active life. If anxiety and depression impact your social life and relationships it may be a good idea to bring it up to your physician. I greatly improved after taking SSRI, which is also recommended and frequently used in the treatment of POTS. 

You said your EP prescribed Metoprolol - that is often a first step BB in treatment of tachycardia and many POTS sufferers improve while on it. I understand being scared to take new meds, especially since we are often very sensitive to even the smallest doses of meds. However - if it was prescribed to you it should be safe. It might make you tired for the first few weeks but that often gets better. 

You mention you tried Diltiazem but where not crazy about it - what were the effects that you did not like? In my case I take many cardiac drugs including BB and Diltiazem and it is one of the most helpful meds I take. 

I also wanted to ask if you follow the usual POTS treatments of increasing water and salt intake and compression hose? Especially since you mention you have some blood pooling in your legs - compression could really help for that. Your EP can prescribe the right compression and you can get measured for the right fit at any medical supply store. 

Here are a few posts from our informational site that may be interesting for you: 

There is much more information that may apply to you under informational resources of this site. I hope you TTT goes well, don.t be afraid to take the medications your physicians prescribes. We will not know what helps if we do not try!!!! Best of luck - and keep us updated!!!

Thanks so much for the kind welcome and helpful information, Pistol!!   

As for the diltiazem, I found that although it lowered my heart rate a bit, it made me overall feel funny (maybe because my blood pressure is not high to begin with), gave me a few extra PAC's/PVC's (which I have had an increase in since the ablation and can feel every single one-not fun), and it also seemed to make my heart beat HARDER, even though it was a tad slower - overall, not a completely horrible med for me, but not awesome so I wanted to try my other options.  I decided today to try ivabradine before I try metoprolol, so will see if I can start on a tiny dose this weekend.  I will also consider an SSRI - so glad to hear one benefitted you!

I have been trying to keep on top of hydration, but need to do a better job, for sure...And the salt unfortunately is a careful balancing act for me because salt intake excretes potassium, and if I don't keep my potassium at a certain level, I get more ectopics - but I do try to have salt frequently throughout the day.  I have an old pair of compression stockings laying around somewhere - I may see if I can dig them up or else order another pair.

Thanks again, really appreciate the advice!!