Introduction And Questions Re: Ttt And Doctor In Hamilton On

[Canadiangirl73]

Hello,

Like many, I've been lurking for quite some time and found a lot of answers and advice on the forum for which I am very grateful. I was diagnosed with POTS over a year ago (of course was told I was anxious at first! ). My resting heart rate can be as low as 50 and jumps instantly by at least 40 + beats. As soon as I'm upright, my BP tanks then goes high and my heart rate follows. I got POTS at the same time I had heart failure. I was basically told that the virus that inflammed my heart damaged my ANS. Thankfully, the cardiomyopathy resolved within a week's time, but the other symptoms (shortness of breath, tremors, hot flashes, chills, chest pains, nausea, etc.) have been keeping me company ever since.

I lie down 80 percent of the day but managed to see a POTS specialist in Hamilton in July. I was supposed to go back this past week but was too unwell to get there (I live a few hours away and have bronchitis-laryngitis right now). So they want to do a formal TTT to determine what subtype of POTS I have. They suspect I'm hyper based on my numbers and symptoms. They told me I wasn't the "typical" POTS patient since I also have a prolongued QT interval and documented arrhythmias (NSVT, SVT and the annoying PVCs and PACs). I must specify I didn't have as much as a flutter before POTS and started having them two months after the onset. My arrhythmias are more acute as my other POTS symptoms get more intense but doctors can't make up their mind as to whether they're related to my ANS or not since my heart is structurally sound. They also happen after I've been upright.

I'm wondering if it is worth having a formal TTT and getting off my beta-blocker before hand. My reasoning is the following: I know I have POTS and the medications they infuse one with can trigger arrhythmias and "activate" my prolongued QT, not to mention that after the tilt the medications they use to help with POTS symptoms are contraindicated when one has a prolongued QT interval (midodrine, anti-depressants, octeotride, etc.). I tried Florinef a year ago and wasn't able to tolerate it. So I guess I'm asking if you think it is worth having the TTT and if others have been seen by the POTS specialist in Hamilton and what the outcome was (I know treatment and experiences vary greatly from one person to the next).

Thanks!

[jangle]

Hello,

Like many, I've been lurking for quite some time and found a lot of answers and advice on the forum for which I am very grateful. I was diagnosed with POTS over a year ago (of course was told I was anxious at first! ). My resting heart rate can be as low as 50 and jumps instantly by at least 40 + beats. As soon as I'm upright, my BP tanks then goes high and my heart rate follows. I got POTS at the same time I had heart failure. I was basically told that the virus that inflammed my heart damaged my ANS. Thankfully, the cardiomyopathy resolved within a week's time, but the other symptoms (shortness of breath, tremors, hot flashes, chills, chest pains, nausea, etc.) have been keeping me company ever since.

I lie down 80 percent of the day but managed to see a POTS specialist in Hamilton in July. I was supposed to go back this past week but was too unwell to get there (I live a few hours away and have bronchitis-laryngitis right now). So they want to do a formal TTT to determine what subtype of POTS I have. They suspect I'm hyper based on my numbers and symptoms. They told me I wasn't the "typical" POTS patient since I also have a prolongued QT interval and documented arrhythmias (NSVT, SVT and the annoying PVCs and PACs). I must specify I didn't have as much as a flutter before POTS and started having them two months after the onset. My arrhythmias are more acute as my other POTS symptoms get more intense but doctors can't make up their mind as to whether they're related to my ANS or not since my heart is structurally sound. They also happen after I've been upright.

I'm wondering if it is worth having a formal TTT and getting off my beta-blocker before hand. My reasoning is the following: I know I have POTS and the medications they infuse one with can trigger arrhythmias and "activate" my prolongued QT, not to mention that after the tilt the medications they use to help with POTS symptoms are contraindicated when one has a prolongued QT interval (midodrine, anti-depressants, octeotride, etc.). I tried Florinef a year ago and wasn't able to tolerate it. So I guess I'm asking if you think it is worth having the TTT and if others have been seen by the POTS specialist in Hamilton and what the outcome was (I know treatment and experiences vary greatly from one person to the next).

Thanks!

There are other ways to expand blood volume (DDVAP or Daily Saline Infusions). In regards to the Long QT syndrome, that is very interesting. What type of virus did you have?

I think the point of doing the TTT is to see how your blood pressure is responding to tilt as that gives one extra parameter that could explain presyncope symptoms apart from the tachycardia.

I didn't have any infusions when I did my TTT, so I don't know how necessary that is. The other tests might also be useful, if they do the QSART to give a broader perspective of your ANS functioning as well as the deep breathing and valsalva exam. Realistically arrhythmias aren't something to be played around with, do you have an EP to consult with?

[Canadiangirl73]

I don't know what kind of virus I had but was told Coxsackie and Epstein-Barr are probably to blame. I know of two other people in my city (of close to a million) who had an inflamed heart at the exact same time I did: one was in the ER with me and the other ended up having a heart transplant in december after getting sick at the end of June 2011.

I am not a fainter. I've had BP readings of 82 over 74 but my BP jumps to "correct" things (I've had readings as high as 149 over 129 following the initial low) and I get tremors, hot flashes, etc. I agree with you that the others tests would be helpful. What worries me are the infusions and I think this physician doesn't do the TTT without them. That's why I'd like to hear from others who have seen him. He his an EP that focuses on ANS issues. I saw two others EPs and they don't know what to do with me neither does my GP!

[arizona girl]

Yes, I think it would be a good idea to have an ep cardiologist involved with any ttt testing, it is possible to go into asystoli duringa a ttt. Just saw that this doc is an ep, that is good, as if he encounters any kind of problem during the test they are equipped to handle it. It is though a question along with it's effects on your qt, that I would discussed with him.

It might very well be that your pots symptoms are due to the cardiovascular and/or virus. With the myopathy of your heart you might also have had damage to your small fiber autonomic nerves, which control autonomic function.

Do you often get bronchitis-laryngitis or other frequent infections? If you do you might also want to look into a primary immune disease.

[Rachel Cox]

I had a long QT too... and that led to me being seen by a cardiologist. Interesting! I hadn't heard of anyone else with that presentation before...

[brethor9]

Hi Canadian Girl

I also live in Ontario and am being treated through an EP/ ANS specialist in Hamilton. I have nothing but good things to say about my doctor...he is wonderful, kind and very knowledgeable. There is more than one specialist at the Hamilton Hospital though and I am not sure which doc you are seeing but I have heard good things about the others too....I know another patient who sees the director of the ANS program and I think she is happy with his care. If you want more indepth information and what I went through you can PM me

Bren