calypso

I've had burning sensations in my chest and also down my lower right leg on occasion. It feels like someone is holding a hair dryer up to my leg or chest. It comes and goes, and I have no idea what it means. I generally ignore it, because it doesn't really disable me in any way. Amy

I have had the shot two years with POTS and one without. The year I didn't get the shot I got a severe case of the flu. I have had no problem with the shot, except my arm gets extremely sore at the injection site. Last year I asked to have it in my thigh, and I had very little soreness. Amy

I guess I'm not going to be one of the lucky POTS patients who feels better during pregnancy from all of the extra blood volume. Aside from horrendous nausea (which I didn't have with child #1), I am having an exacerbation of my POTS symptoms, especially shortness of breath, tachycardia, fatigue (beyond the normal fatigue from pregnancy), digestive issues, sensitivity to noise, and weakness. Another weird thing is that I already am experiencing swelling in my legs on occasion, and my blood pressure is low, if anything, so it's not because of high BP. I guess I've always had water retention problems, but I didn't expect them to worsen so quickly. Most days I can do little more than prepare some meals and take basic care of my toddler. I can barely go for a walk without feeling like I'm having a heart attack or becoming exhausted, which is frustrating because I have always had luck with exercise making me feel better. I see my OB for the first time the first week of October and will bring all of these things to his attention. I feel so bad for him, because I'm going to really make him work for me, compared to all of his "normal" patients. I'm hoping that when I get out of the nausea phase, that things will improve. They have to improve, right?! Just thought I'd update, because I could use the support and also because I know several here have asked about what pregnancy may be like for someone with POTS. Amy

Amber, What is your heart rate? If it's below 150, you probably shouldn't be shocked. Unless, of course, you are not in sinus rhythm. Cardioversion is most commonly done for patients who have atrial fibrillation, and the heart rate with this is usually 200-plus. You need to ask the doctor what rhythm you are in, what the heart rate is and why he wants to cardiovert. And if he's talking ablation, that does not help POTS patients (unless they have another heart condition in conjunction with POTS). Sorry you left feeling confused and upset. Please ask these questions before you get any more care from this doctor. Amy

Could you be having an allergic response? Otherwise, it is completely possible that you are having POTS-related nausea. Other people here have that. I do not. Hope you get some answers, or at least some good suggestions on how to control this. Amy

Dayna, Do you have a Target nearby or a Costco? I would suggest a place like this because you should be able to find everything in the same store. That eliminates the need to stop at different stores. Prices are fair, workers are treated pretty well at both stores, and they do have the motorized carts available if you need one. I would try and arrange to leave your kids at home when you shop, or at least bring a friend or relative to help watch them. I also get sickened by shopping for whatever reason -- always have -- and try to do as much online as I can. Amy

This is awful news. This does seem so much autoimmune in nature to me, but of course, if she's been thoroughly tested in that respect by multiple doctors, we probably can't argue. Just please let her know we're all thinking of her and not to forecast into the future -- i.e., that she's dying. Many of us here have thought we were dying at one point or another and turned things around somehow. I would also encourage her, depending on her financial situation, to look into alternative treatments (acupuncture, naturopathic medicine) if she has exhausted all Western med. options. Some others here may not like that advice, but when in desperation, you try whatever may work. And these two disciplines have proven successful to many people. Amy

I have had episodes during which my body becomes extremely red and flushed, but it is always accompanied by tachycardia and a choking sensation. It's very odd, because I don't feel nervous, though all the symptoms seem like a panic attack. But they clearly are not panic attacks because of the flushing. I haven't had any explanation for them, and I find that I get them more often (but even then, maybe every few months) after I eat a large meal or something sugary. So I avoid doing both of those things. Amy

Corina, This is awful. I am so sorry you have to deal with this in addition to all of the other stuff. Do you suffer from muscle weakness? I'm wondering if this could be a weakness of the muscles that support the bladder. Could you try Kegel exercises or whatever else a doctor prescribes? These would be non-invasive and maybe they would actually help things a bit. The muscles seem to play a large role in helping you to "hold" it. Good luck, Amy

Maybe the BB just reined in the high-adrenaline output (which can make you feel warm)? I usually find that when I take BBs, my feet and hands are a lot colder b/c they restrict flow to the limbs. But I don't notice a bodywide effect. Amy

Just wanted to say I'd stick to Milwaukee or Marshfield Clinic, or even go to Mayo. I live near Madison, and just one of the eight doctors I saw at UW -- which is supposed to be a major medical center -- had ever diagnosed POTS. My cardio knew of it but didn't think it was common or a "real" diagnosis, because he thinks syndrome labels are inaccurate and don't explain the problem. And that cardio is ranked in the top three in the city. My neuro diagnosed me, and he said I was the second-ever case he'd diagnosed. I think he's in his late 30s and been practicing for nearly 12 years. Good luck. Amy

Happens to me, too, especially if I am sick from a virus or under any sort of stress. Amy

Miriam, So sorry you have to deal with yet another affliction. I wonder if this kind of liver damage is either connected to years of autonomic dysfunction, or possibly your liver being taxed from processing so many medications over the years? These are absolutely non-medical ideas. I don't know much about the liver, except for what I know from my mom's problems (she is a recovering alcoholic and was on the verge of cirrhosis before she quit). Amy

Rita, how are you feeling today? This sounds to me like the beginnings of a virus. But hopefully you fought it off and are back to work today. The other possibility is hormone fluctuation. I sometimes get what are like hot flashes, and I'm only 30! Amy

Seems to me like this number would always be fluctuating, based on how much fluids you take in and how much you excrete or eliminate. There's probably no way to know without another test, but then, what treatment would you get if your volume is down? It's probably no different than how you're treated right now. Just thinking it might be an expensive test to find out info that may not help with treatment. Amy

That is awful. Let's hope that if there is reincarnation or another life, that he spends his next in a wheelchair. Amy

Shannon, I have nonstop problems with air hunger and also with "forgetting" to breathe. I also have what I'd call restriction in my chest, which makes it feel like my lungs cannot expand. This all began when my POTS began. There is no test that picks up any abnormalities with my lungs or otherwise, so I have been dealing with it on my own for the last 2 years. Sadly, nothing really helps, except sometimes if I lay down I feel my breathing is slower and more relaxed. But it still feels restricted. For you, this may be an episodic thing -- maybe it will come during times of stress or when you're having a flareup of symptoms. I've tried some pretty weird things to fix this -- acupuncture, vibration therapy (where you basically hum for long periods of time in different keys), massage, reiki, etc. I probably wasted a few hundred dollars to get nowhere. Anyway, thought I'd share. Amy

I got panic attacks 10 years before I developed POTS, and I definitely can tell the difference between those and an adrenaline rush from POTS. Adrenaline rush: I get nauseated, hot, feel like my head is filling up with blood and ready to explode off my shoulders, heart rate is usually over 130, begin to choke because it feels like my throat is closing. Despite all of this, I don't feel scared or nervous. I'm generally weak and exhausted by this afterward. Panic attack: Feel very out of it, heart pounds but doesn't race, feel VERY scared, have some tingling and numbness in my arms and neck. Hope that helps. Amy

Ernie, I'm right behind you. Dionna, I don't know your history -- when did your POTS & fainting begin? Did you and your boyfriend start fainting at around the same time? Could it be an environmental factor at work, such as a pollutant or irritant in the air, something you're both exposed to, etc.? Amy

Morgan, I so hope this helps you and that you are handling everything OK. We're all thinking of you! Amy

I have pregnancy-induced POTS. However, I developed the bulk of my symptoms in the few days following delivery. I had pregnancy-induced hypertension clouding the picture as well, which seems to be fairly common among women here with POTS. My health went from pretty good to completely wrecked in the week after I had my daughter 2-1/2 years ago. I could no longer stand up, take a shower, or even sit up, without my heart rate hitting 130-plus. I also developed some sort of breathing dysfunction that has yet to be detected on a pulmonary function test, but it feels like I have forgotten how to breathe, and that my chest is chronically tightened so that my lungs cannot expand. I went on a beta blocker, tried several antidepressants and anxiety meds (because for a while, that's what my doctors thought my POTS was) following all of this. I eventually stopped everything because, call me crazy, I wanted another child. I just found out about three weeks ago that I am pregnant. This time around, things are going to be an experiment. So far I feel slightly worse than usual, but I am also off all of my meds and feeling the usual nausea and fatigue associated with normal pregnancies. I'm just hoping the baby and I come out alive and without any major complications. Amy

Sonotech, hope you are getting stronger and are able to get through this tough time. You are in my thoughts. Amy

Hope this issue has cleared up for you. I have had petechiae twice, for no good reason except maybe that I was taking a baby aspirin every other day. Best to get this checked out because it may be a sign of an underlying problem. Amy

I had blood levels of cortisol checked for both Addison's and Cushing's. I think this is a logical thing to test for, because it's usually treatable. Amy

Metoprolol at 25 mg is fine to stop without weaning. My cardiologist said even a dose of 50 mg is OK to stop at any time for tachycardia. It's the BP issue that is most important, or if you have heart disease. Obviously, check again with your doctor, but this should be fine and you should not be in danger. Amy