Had Tilt Table Test today....

[Super_tachy_1]

...and WOW was I in for a big surprise!!

So, brief history in case it helps anyone - I was fairly healthy and considered myself fairly normal (other than an SVT and associated pretty bad health anxiety that went along with that) up until having an ablation for it back in June 2019.  After the ablation, I developed an overall much faster and more reactive heart rate, and started getting bad reactions to things like heat, certain foods, moderate exertion, and alcohol - none of which I had a major problem with before.  I was finally diagonsed with Inappropriate Sinus Tachycardia last month, but mentioned to my EP at that appointment that I had noticed that my heart rate went up around 30 beats per minute when I stood up, and asked him to do a Tilt Table Test to rule POTS in/out.  As I have no real history of fainting (other than maybe 5 or 6 times of feeling lightheaded and like I might black out in the shower over the last 20 years, but it passed if I got out of the shower - I have never actually fainted), I expected the test to be pretty uneventful, and my EP was basically doing it to humor me/shut me up, so I figured "easy-peasy-lemon-squeezy", right?  Wrong.

I don't have the official report yet, but I know I went up about 30 beats (roughly 75-105) after a minute or so,  then came back down to around 80.  My blood pressure was fairly normal and constant.  I figured it would stay around that way for the remainder of the test.  Well, after a few more minutes, the nurse asked me if I felt lightheaded.  I turned my head and saw that my BP was around 105/65, but I felt ok so I said no, I'm fine.  After maybe another minute I started to feel nauseous and it very quickly over the next minute or two after that progressed to feeling shaky and just overall bad.  Then my vision stated to gray out a bit and I freaked out and told them to stop the test.  I got hot and sweaty when they tilted me back then after a few minutes felt freezing cold.  I found out later that the last BP measurement before I asked them to stop the test dropped so low that the cuff couldn't even register it!!! They called it "non-palpable".  And my HR climbed back up to 111 or so while my pressure was dropping. 

It took me a while to recover, but they brought me some water and a sandwich, and I eventually left to go home.  On the drive home, I started feeling sick and shaky again and I asked my mom if she could drive the rest of the way.  She took over driving but after about 2 minutes I felt anxious and shaky like I was going to pass out, and we had to pull over at a gas station and call the paramedics.  When they came, my BP was 158/115!!!  I have never in my life had a reading that high, and I am no stranger to panic attacks.  I ended up in the ER, and after being checked out as ok and given another sandwich and a big glass of water, was released.   

We made it home and I am feeling a little better now, but I am pretty shaken to the core - I never really thought the test would make me come close to passing out (even though I was pretty scared of what I considered the small possibility of it happening).  My EP was pretty stunned and said it was a "very positive" test and is calling it "Neurogenic Syncope" - I asked if this can be considered POTS, and didn't really get an answer - he said POTS is sort of a subset of Neurogenic Syncope.  In any case, he did prescribe midodrine and I am supposed to start taking it tomorrow, although now I am scared knowing that my BP can actually get so sky-high under stress.  And I'm freaked out that my body seems to have so much POTENTIAL to pass out, that I didn't even know was there until today.  

All in all, quite a day....and I'm still not totally sure if I have POTS or not 🤦‍♀️ I'm inclined to say "yes", mainly because it's a heck of a lot easier to say than "neurogenic syncope" lol.

[Sushi]

18 hours ago, Super_tachy_1 said:

After the ablation, I developed an overall much faster and more reactive heart rate, and started getting bad reactions to things like heat, certain foods, moderate exertion, and alcohol - none of which I had a major problem with before.  

First off, really sorry that you went through all this. My TTT was similar except I didn't get so much of a rise in HR. My diagnosis was Neurally mediated hypotension. I also had to stop the test and felt really bad afterwards. It was the hardest test I have ever done. I have Afib and read a lot of Afib forums so I know that ablations usually raise your HR for a year or more. They can also irritate the c**p out of the heart and make it more reactive. There are also autonomic ganglia in the heart--I wonder if they ablated any of them? Having heard that this could potentially cause or exacerbate autonomic problems, I have held off on getting an ablation for Afib. 

While your test "looks" positive for POTS (definitely positive for dyautonomia) the fact of your fairly recent ablation makes it less certain as tachy is quite common for many months afterward. Many have said that the tachy was worse on exertion--so you may need to wait some more months to know whether you are officially potsy. 

19 hours ago, Super_tachy_1 said:

In any case, he did prescribe midodrine and I am supposed to start taking it tomorrow, although now I am scared knowing that my BP can actually get so sky-high under stress.

Midodrine can be a tricky drug. It should work like magic for me (and did for 2 weeks), then I got really scary high BP after a dose. My autonomic doc discontinued it for me. I tried it again recently (prescribed by my EP) but couldn't find a low enough dose to actually work while not rocketing my BP. So I'd just monitor your BP closely while trying it and perhaps ask to start with a low dose. Good luck with all this. It can be an alarming journey but most of us find ways to stabilize. 

[Super_tachy_1]

On 1/8/2020 at 3:08 PM, Sushi said:

First off, really sorry that you went through all this. My TTT was similar except I didn't get so much of a rise in HR. My diagnosis was Neurally mediated hypotension. I also had to stop the test and felt really bad afterwards. It was the hardest test I have ever done. I have Afib and read a lot of Afib forums so I know that ablations usually raise your HR for a year or more. They can also irritate the c**p out of the heart and make it more reactive. There are also autonomic ganglia in the heart--I wonder if they ablated any of them? Having heard that this could potentially cause or exacerbate autonomic problems, I have held off on getting an ablation for Afib. 

While your test "looks" positive for POTS (definitely positive for dyautonomia) the fact of your fairly recent ablation makes it less certain as tachy is quite common for many months afterward. Many have said that the tachy was worse on exertion--so you may need to wait some more months to know whether you are officially potsy. 

Midodrine can be a tricky drug. It should work like magic for me (and did for 2 weeks), then I got really scary high BP after a dose. My autonomic doc discontinued it for me. I tried it again recently (prescribed by my EP) but couldn't find a low enough dose to actually work while not rocketing my BP. So I'd just monitor your BP closely while trying it and perhaps ask to start with a low dose. Good luck with all this. It can be an alarming journey but most of us find ways to stabilize. 

Thanks so much for your reply, Sushi!!  I agree that some of the nerves may have been ablated in my heart, especially since my ablation was in the right atrium, which apparently has a much higher density of autonomic nerve than the left atrium.  I asked the EP who did the ablation and the tilt test about this twice, and both times he seemed to dismiss the idea.  I actually have an appt for a second opinion with another ER tomorrow morning, so we'll see what that brings.

And I totally don't blame you for holding off on the ablation for this reason!!  From what I have read, I think AFib ablations usually are in the left atrium around the pulmonary veins, so maybe you might be relatively ok if you eventually decide to do it?  But proceeding with caution like you are doing is a very smart thing!!

Yeah, I have been too scared to try the midodrine so far lol - since I don't have a history of passing out in my day-to-day life, I honestly would prefer to just stick with ivabradine, especially since my BP gets so high with anxiety.  Will ask the second opinion doc about this too.

I guess I'm a just work in progress at the moment

[Sushi]

On 1/9/2020 at 5:11 PM, Super_tachy_1 said:

 From what I have read, I think AFib ablations usually are in the left atrium around the pulmonary veins, so maybe you might be relatively ok if you eventually decide to do it?

Yes, Afib ablations are in the left atrium, but: 

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It should be noted that although the epicardial surface of both atria is covered by a dense neural plexus, the highest density of neurons is found at the posterior wall of the left atrium (5). Several studies have demonstrated that the GP contain both sympathetic and parasympathetic elements https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4540352/

So, I want to gather more information--like would the EP performing the ablation be able to selectively ablate either the parasymathetic or sympathetic parts of GPs (autonomic ganglia, known as ganglionated plexi (GP)? or is is sort of Russian roulette if they ablate these ganglia? I believe that many EPs do ablate the ganglia. 

Quote

I asked the EP who did the ablation and the tilt test about this twice, and both times he seemed to dismiss the idea.  I actually have an appt for a second opinion with another ER tomorrow morning, so we'll see what that brings.

Good idea! I'll be very interested to hear the second opinion. If you want to read research material before your appointment, the reference above is very interesting, as is: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4321068/#__ffn_sectitle

I really hope all this resolves for you. 

[Alice Jean]

Hi Super Tachy -

I too have had horrible symptoms since my cardiac ablation (12/2018)  i went from working full time for 36 years to a needing a wheelchair / cart to go grocery shopping.  My life is over as I’m just existing now.  

I would love to chat with you.  My email address is araspo79@gmail.com.  
 

[Pistol]

4 hours ago, Alice Jean said:

I too have had horrible symptoms since my cardiac ablation (12/2018)  i went from working full time for 36 years to a needing a wheelchair / cart to go grocery shopping.  My life is over as I’m just existing now.  

Dear @Alice Jean - I am so sorry you are going through this! I too became disabled and housebound 6 years ago from hyperadrenergic POTS, after 23 years of being a full-time RN. I often felt - and at times still do - feel useless and depressed. I too need a wheel chair to go shopping or any other events where walking is required, but I mostly don't even go because then I have to rest for a day or two after. As you see - I can relate. However - when I feel low and down like that I list all of the things I still CAN do and all the blessings in my life, such as my family and all the many people that help me in any way. There is still so much to enjoy in life and if I run out of things I can do I create new ones. Before Christmas I was depressed b/c I could not really do any shopping or crafts for gifts. But I found an old book on candle making and bought supplies on amazon and voila - I was able to make beautiful handmade scented candles in all shapes and colors as individualized gifts for the whole family.  They loved them and it became a rewarding hobby for me which I enjoy. Today many people bring me their left-over candle stumps and I create new ones for them out of all of the wax.  --- Your life may feel like it is over but in reality - it is just not as it was. I have found that we do not have to be upright, healthy, energetic or even particularly creative to make our days worthwhile. My mother always said: " Just because it is cloudy does not mean the sun don't shine"! -- Be well, dear Alice Jean, and best wishes!!!!

[Super_tachy_1]

12 hours ago, Alice Jean said:

Hi Super Tachy -

I too have had horrible symptoms since my cardiac ablation (12/2018)  i went from working full time for 36 years to a needing a wheelchair / cart to go grocery shopping.  My life is over as I’m just existing now.  

I would love to chat with you.  My email address is araspo79@gmail.com.  
 

Hi Alice Jean!  I'm so sorry to hear that you are having issues since your ablation as well - I am interested to hear your story - will send you an email this evening!

[Sushi]

On 1/11/2020 at 1:00 PM, Sushi said:

I want to gather more information--like would the EP performing the ablation be able to selectively ablate either the parasymathetic or sympathetic parts of GPs (autonomic ganglia, known as ganglionated plexi (GP)? or is is sort of Russian roulette if they ablate these ganglia? I believe that many EPs do ablate the ganglia. 

Sorry for quoting myself but I really want to learn more about this and realized that the one doctor who might be able to clarify it is Dr. Blair Grubb. I am not his patient but have followed his work for many years. He is an EP, does ablations in very specific circumstances and would know the risks or benefits of ablating the autonomimic ganglia in the heart when doing an ablation for Afib. The best EPs who do many, many ablations for Afib would not have his knowledge of how it might affect the ANS of a dysautonomia patient. If anyone has an idea of how to contact him with, what for him would be a simple question like this, could you please send me a private message? For me this is a critical question as the drugs I am taking now to prevent Afib will stop working (they always do eventually) and then ablation is the only known treatment.

 

12 hours ago, Alice Jean said:

I too have had horrible symptoms since my cardiac ablation (12/2018)  i went from working full time for 36 years to a needing a wheelchair / cart to go grocery shopping.  My life is over as I’m just existing now.

This is really tough Alice Jean--I totally feel for you.