calypso

My POTS symptoms get much worse with any virus I develop, and I also take a couple days longer than in my pre-POTS days to fight it off. I needed antibiotics at least three times last year, and that is more than I needed in the last five to 10 years. When I get a fever, I get extremely tachycardic, and I get a lot of "skipped" beats (PVCs or PACs). I also get even more short of breath than usual, and feel beyond exhausted -- like I am going to slip into a coma, no joke. I try to do very little when I am sick; drink A TON of fluids; eat extra-healthy, if I can eat at all; take my multivitamin; and drink cranberry juice, which is probably worthless, but it makes me think I will feel better, because of the vitamin C and antibacterial properties it has. Amy

I have had these flushing waves before, but don't know if I would call them "normal," even for POTS patients. I'd give them the two-day test -- see if they go away in a couple days. If not, get checked out. Amy

Julie, I am sorry to hear you're having BP lows. I am unclear if you are more concerned about the numbers, though, or if you are actually symptomatic from the low BP. If you have no symptoms, I don't think I would be as concerned. Yes, these numbers are low, but I would have your BP checked in a doctor's office early in the morning to make sure they are right, even if you checked your husband's BP and it was on target. Now if you are symptomatic, then I would probably be concerned as well. You don't want to be fainting, be dizzy, falling, etc. But still, you have Dr. Grubb taking care of you, and he's probably the best person you could have. I don't know if an ANS clinic would be any more helpful. I don't want you to take this the wrong way, but at some point we all have to accept we are doing the best we can for ourselves, our doctors are doing the best they can for us, and there may not be any more answers or fixes. I know you have issues beyond POTS that relate to the brainstem and cervical instability, so that complicates the picture. And I remember you've had trouble being correctly diagnosed. But I would certainly hope that after seeing two or three doctors, at least two of them concur on a diagnosis and plan for you. Have you gotten this sort of feedback at this point? If not, that may be the direction to head in. You can always call Grubb's office and ask about the low BP issue, right, to see if there's anything you should be doing? Have you taken the basic measures to up your BP -- salt, fluids, eating well, etc.? I wish I had more ideas for you. I hope you get this all sorted out. In the meantime, rest and know you are doing a good job of being your own doctor! Amy

Unless your BP is dangerously high -- 200/110 or higher -- then it's probably not symptoms of high BP you're experiencing. If your BP is lower than 90/60, you may have occasional symptoms like dizziness and lightheadedness (especially when you stand up quickly, so move slowly) and cold hands/feet. Many of the POTS symptoms don't seem to be from the BP but more from whatever else is going on in our bodies. I have very normal BP most of the time and have all kinds of weird dizziness/vertigo/fatigue/etc., plus body temp. fluctuations. Amy

Nina, No pun intended, but that stinks. I hope you are lucky and someone figures this out for you. Eating is one of the few pleasures I have these days, and I think it is for a lot of us. Amy

I'm sorry, Lisa. Sadly, everyone seems to expect that first-time denial b/c that's what usually happens. I would definitely try again, and keep trying till you get it. Amy

I have yet to hear of anyone who has had an ablation that alleviated their symptoms, and this includes people from another site I visit where the patients have high heart rates in general and not POTS. I'd be very wary of doing an ablation. Amy

I swell in my hands while I sleep, but it's because all the fluid that has accumulated in my ankles and lower legs during the day needs to go somewhere, so it goes to my hands and face. I tend to look a little puffy in the face and hands when I wake up, and a little puffy in my legs when I go to bed. I also wake up having to go to the bathroom badly because of all the fluid needing to leave my body. All of my cardiac testing comes back normal, so I have no idea why I would retain water. In your case, it seems odd that your legs swell when you lie flat. It just doesn't make sense physiologically. I would get this checked out. Amy

I only get cold, but I have been this way all my life, even pre-POTS. I have to wear a lot of fleece to bed! Amy

Sounds like me. I do not have huge BP drops. The diagnosis is based on the tachycardia, not the BP drop. However, I have unofficially been diagnosed with POTS, using the poor man's tilt (laying flat, then sitting, then standing, w/ BP measured after a minute in all three positions. My heart rate increase from 60 to 130 was enough to convince my neuro. Having the diagnosis is of no importance to me, except that I found this site (but I had done that before seeing the neuro). It doesn't mean something else isn't wrong with you, and since the treatments are comfort-oriented, it doesn't help a whole lot to secure a diagnosis. The only other case in which it might be important is for SSDI. Amy

I have had low potassium levels, I think around 3, in the past. I haven't had it checked for a long time but would guess it would be low again. I try to eat K+-rich foods but just seem to go through a lot of this substance, for whatever reason. I have read here that it's the first mineral your body goes to when it's under stress. Amy

Have you used all of your short-term disability? If so, I would apply for long-term disability. It's worth a try. You obviously have tried to show up for work and even tried to go full time. Do you have any other family you can stay with? Or friends? Maybe there is something you can do for your dad to make up for the rent -- does he have a business that you could help with from home? Or if you were to stay at home all the time, could you clean and do chores? Maybe you would feel well enough because you wouldn't have the added stress of a job. Sorry you are going through a rough time. Amy

I would not think POTS could cause blood sugar elevations that high, but I am not sure. Anything above 126 on a fasting glucose test is considered diabetes, I believe. 206 would be pretty high, if you were fasting. If you had just eaten, this may be normal -- I don't know how that works. Are you supposed to be monitoring your glucose at home? Because if you haven't been given the proper instruction, you could be taking it at the wrong times and getting higher readings because you've recently eaten. My dad was diabetic for 20 years, so having watched him a lot, I know you aren't supposed to check glucose until right before you eat -- so at least four or so hours after your last meal. And you only need to check it this frequently if you are insulin-dependent. I think non-insulin-dependent diabetics only check it morning and evening. Amy

I usually have a virus or infection if I have a temp above 99. I would get her to a doctor. 104 is pretty high for an adult. This is probably a long shot, but has she been evaluated for lupus? Sometimes the symptoms aren't always obvious, but one of them is frequent fevers. I'm not trying to scare you, just making sure your daughter's doctor has been thorough. It's not the easiest illness to diagnose. At one point my doctors thought I might have lupus but it eventually was ruled out, mainly because of the absence of fevers. I hope she cools down soon and nothing is wrong. Amy

I work part time as a copy editor at a newspaper, part time as a massage therapist and take care of my toddler full time. My paid work hours are usually about 25/week. It's tough, but I get through it. Willpower is important for me, although many others here have willpower but just can't work because they don't feel well enough. I consider myself lucky. Amy

Linda, If you have any doubts about your doc's opinion on whether it's safe to have a child, get a second opinion. If having a baby is a goal you have, don't rule it out. On the other hand, if you know if your heart you are not feeling anywhere near well enough to have a child, and are having serious doubts about getting through a pregnancy, then consider adoption, foster care, surrogacy. All are great options. I have one child but developed POTS shortly after having her. The pregnancy was my POTS trigger. I want another child but know I will probably pay for it physically. I have accepted that I may not feel well during the pregnancy, may not make it to term, etc., because I have decided that I have to try -- I have lived my whole life wanting many children, and I think it will work out how it's supposed to. If I cannot conceive or carry long enough for a viable baby, I guess we'll look into adoption more. So just make sure you have all the info you need so you can make an educated decision. Good luck. I totally know how you feel. Amy

I take Flonase or Nasonex seasonally, plus, if the allergies get really bad, I add in Allegra. It's the only Rx drug that works for me. I do not find that these drugs worsen my POTS; in fact, I think not treating the allergies is worse, because I end up with a sinus infection, and then my POTS gets really bad. Amy

Thanks, you guys. I was feeling a bit better on Thurs. and Fri., and would still be today if I didn't have to work until 3 a.m. last night and then wake up with my 2-year-old at 8. Sometimes I wonder about this newspaper job I have ... but I really do enjoy the work, so I struggle through it when I have to. Anyway, I am going as slowly as possible off of the Effexor. I don't think I'm having withdrawal because I'm going off too fast; I think it's just that my body is obviously different without the med in my bloodstream. I will adjust, I know. I have gone on and off several antidepressants, so I know how it feels and what to expect. I think it was just that while I was going off of that, and then having a bad period, plus my husband's insensitive remarks, I just lost it. About the heaving bleeding, thanks, Laila, for the advice. I have my six-month checkup on Mon. with my rheumatologist, who is actually more of a general doctor for me. I will ask him if he thinks I should get a second opinion. I literally trust this man with my life. I am also hoping to get some answers about these little blisters I have on the tops of my fingers, near my knuckles. They just started a month ago and are recurrent -- if I do something to scratch or puncture the blister by accident, it "grows" back. I am hoping it's not another autoimmune issue or a virus or something weird! I don't feel like thickening my medical chart any more. I don't know what I would do without you guys and this site. Thanks. Amy

That's great! Thanks for sharing some good news. amy

Hi Diana, I do not have EDS. But I wanted to say that despite not having it, I do have the same exact breathing difficulties you have. So I guess what I am trying to suggest is that the breathing issue may not be due to EDS, or in your case it may. But for me, I don't have EDS but still can't breathe right. My doctor continues to think that it's either a microvascular circulatory issue (gas exchange in the capillaries that affects oxygen levels), or a neurotransmitter or vagus nerve receptor issue. He says he has seen two other people besides me in his 30-year medical career who can't breathe but have no physical, measurable reason for why. Amy

Hi everyone, I haven't posted an actual question or topic in a long time. But after the week I've had, I think I need a figurative shoulder to cry on. In a nutshell, I am mentally and physically exhausted. It all started with gradually weaning myself off of Effexor throughout the last month, with not-so-good results. I am going off of it so slowly, opening up the capsules and pouring out a few more of the little white dot thingies each day. I did fine until about three weeks into it, when I was only taking a third of the 37.5 mg pill. This is so ridiculous because the dose I was taking isn't even at a therapeutic level -- 75 mg is what most people take at minimum, and many take up to 300 or so mg. But I am having PVCs ("skipped" heartbeats) right and left, and I feel like any noise or stimulation makes me nauseous. Of course, then I became swamped at work. I coordinate the internship program at the newspaper where I work, and all of the applications are due this week. So I have to process all of them and set up interviews for next week. Meanwhile, I got my period, which was by far the worst I have ever had in my life -- excluding the one time when I was 16 and fainted because I had such bad cramps, and had to be taken by ambulance to the hospital. Now that I think of it, I remember the EMTs not being able to get a BP reading, and when they finally did, it was like 75/45 or something crazy-low. Hmmm ... So anyway, after taking a massive dose of Advil and thinking I was in labor again yesterday, I finally got things under control. But I am having very heavy bleeding, and my midwife -- who I've told about this twice before -- says there's nothing that can be done for it, because she thinks it is caused by stress. Even though the heavy bleeding part has been happening for the last year. I have been randomly crying because I think I am so out of sorts, and I am so frustrated because I really want to try and have another baby. (This is where you say to yourself that this girl is wacky.) That's why I am trying to go off the Effexor, and now I am down to just a tiny dose of Klonopin and beta blocker. Next I have to quit the beta blocker, and that scares me even more. Oh, and my husband, who has usually been pretty good about helping me when I need it and listening, told me I need to lift more weights and exercise more, and to stop making excuses as to why I can't do this or that. I was saying I miss playing volleyball in a league, and he said if I tried to play, then I could play. But he doesn't believe how dizzy and horrible that would make me feel. So anyway, I'm not sure what I am looking for anyone here to say. I guess I just can't comprehend that I have been feeling exactly the same for the last two and a half years and I still have no answers as to why. I still can't breathe right, I have reduced sensation in my hands and feet, my muscles have nearly disappeared, I feel wiped out and get sick with viruses all the time, and my body totally overreacts to being startled -- I practically jump out of my skin sometimes. The only positive is that over the last two months I gained back 10 pounds of weight and am officially in the normal weight category now, instead of underweight. But all the weight went straight to my stomach! Maybe I need some me too stories, or someone to rain some positive thoughts on my whining parade. I swear, I normally hate whining. Amy

Dayna, Sorry to hear you had a bad experience with a doc listed here. Good idea for the person to be removed. Yes, POTS and autonomic dysfunction can definitely occur postpartum, even with a normal pregnancy. One of my best doctors told me the postpartum state -- the immediate few days following delivery -- is when your heart is working its hardest ever, even more than during the actual pregnancy. The autonomic system is heightened and is also working at its hardest. The heart rate goes up, as well as BP, even in normal women -- not above 100 or 120/80, but they do go up. Also, pregnancy is a prime time for autoimmune diseases to develop because your body has a foreign body in it ( the fetus), so if you have any susceptibility to autoimmune disease (and some researchers do think POTS may be autoimmune in some of us), pregnancy can be a trigger. All of this said, there's nothing you can do to change the fact that pregnancy may or may not have triggered your POTS. If you do not want more children, I would seriously talk with your husband about your birth control options. However, some people here have actually gotten better after a second pregnancy, so please don't rule out another pregnancy if it's something you wanted pre-POTS. Take care, Amy

Nina, I have definitely noticed that over time, all of my senses have dulled a bit. I can't smell, taste, hear, see or feel things like I used to. It disturbs me that I can have water dripping on my feet from doing the dishes, but I can't feel it. Or sometimes I turn on the water and can't tell if it's hot or cold. But this didn't happen to me overnight. If you are having more of a sudden loss of sense of taste/smell, I would be willing to bet it has something to do with your sinuses being blocked or irritated. I had a cold about a month ago, and although it wasn't a particularly bad one, after I had it, I lost my taste/smell senses almost completely for a week. It drove me nuts! (Mainly because I eat almost nonstop, and I might as well have been eating dirt.) So I would explore the sinus/upper respiratory route. But if it lasts beyond another week or two, then it's time to check in with a POTS/dysautonomia expert, I suppose. Hopefully it goes away soon! Amy

My MRI was normal; the only item worthy of note was that my pituitary gland appeared to look "full." But it was not enlarged enough to warrant more testing. Plus, I had a blood test that had something to do with pituitary function and it was normal. Hope you get some answers soon. Amy

Susan, Did you say your worst POTS symptoms developed during or after pregnancy? It is fairly common for POTS to really hit hard during these times. Are you still breastfeeding? That also can be a factor in it, because of varying hormone levels. What is happening with your blood sugar levels? Are they high all the time? Are they only slightly high -- prediabetic? Do you have a family history of diabetes? Autonomic neuropathy can be a consequence of uncontrolled high blood sugar, or diabetes. How long have you had high blood sugars? Sorry for all the questions, but sometimes this helps others here and you as well to figure things out. Are you eating a low-sugar, low-glycemic index diet? (This would be no white sugar, flour or anything junky). Sticking to a whole foods diet (things that are unprocessed and don't come out of a box) is very helpful for many here. At the very least, it may help the high blood sugar issue. Are you able to exercise at all? That also could lower your sugar. Amy