Canadiangirl73

I was wondering if others are more prone to catching viruses since they've had dysautonomia. I will be turning 40 in a few months and can count the number of times I was sick on both hands before this POTS ordeal started 18 months ago. I do have two little ones who bring germs home from school and day care, but I seem to catch everything now and it takes me a long time to get over it when I used to bounce back very quickly. Thanks.

This is one of the symptoms I hate the most, this and chest pains. I get those after being on my feet too long but also randomly, like in the middle of the night or when I first wake up in the morning.

I have had a lot of documented palpitations (PACs,PVCs, NSVT, SVT) via Holters and event recorders are they mostly correlated to postural changes (lying to sitting, standing to lying, etc.). I really believe it is tied to cardiac filling, more specifically filling of the left ventricle which is the heart's main pumping chamber. In a non-POTS person, it takes only two heart beats to bring back up the blood that is pulled down by gravity. In us however, the complex mechanism is faulty so blood pools making our heart work harder to adapt to the shift in volume. I have had bigeminy (normal sinus beat, PVC, normal sinus beat, PVC, etc.) after a vasalva-type maneuver which modifies venous return. So IMHO and in my case, I have definitely put the two together. If I do something that affects the venous return to my heart or if I don't wear my compression gear to help with pooling or if I'm dehydrated and didn't have enough salt, I will definitely get more of those. Also, I had several ECGs lying down and standing and the standing ones show my T-waves (to simplify the "electricity" in the ventricles) are flat or inverted. After founding that out, I dug a bit deeper and found that studies came across this phenomenon in POTS patients. Dr. Raj at Vanderbilt even discusses this briefly. http://www.ncbi.nlm.nih.gov/pubmed/17617070 http://www.ipej.org/0602/raj.htm I was told these are benign. They are uncomfortable at times and yes they can be weird or scary but I've learned to keep them at bay as best I could by eating salt, being hydrated and wearing all of my compression garments. I never had them before the onset of POTS; they started two months afterwards. I've had POTS for 18 months and palps for 16 and I'm still here! Hope this helps! P.S.: The palps do wax and wane like the rest of the symptoms and I have more of them when I'm more potsie.

I didn't drive for 13 months after the onset of my symptoms but started again in July. I only drive on "good" days and keep it to a 15 minute radius. Also, I always have someone beside me. I found resuming driving makes me feel like I have a part of my old self back and that lifts my spirits.

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!

I always wake up a bit tachy with the intense feeling of being startled (hate the latter!). Before I even attempt to sit up, I drink 500 mL of water and eat olives (kinda gross but they're super salty!). I take Metoprolol, 12.5 mg, and lorazepam,0.5 mg. Then have another 300 mL of an electrolyte drink. I'm usually able to sit up around 10:30 am and can get up around noon. I used to be productive in the am but not anymore.

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!