calypso

I also have episodes of flushing; they are rare and only last for about 10-30 minutes. But they are INTENSE. I also feel like I am choking, and my heart rate tends to go up significantly when this happens. At first one of my doctors thought these were panic attacks, but the flushing/choking seems more like a histamine thing. I went on Effexor about a year ago an the episodes stopped completely. I am going off of it now and hope they don't come back! Hope you get the correct diagnosis. In the meantime, welcome. Amy

Ling, Just a month and this will all be history. I am sure you are so excited and feel like it's hard to believe this is happening. I remember a year or two ago when you were telling others here how scared you were to go off your meds to have a baby. You are stronger than you thought! Why can't you have an epidural? Because your BP might drop too low? That's usually what you get with a C-section, I thought. Amy

That is great news, Lois! Now you can go back to just having POTS -- what fun! Amy

Hi Ling! I've been thinking about you and hoping you're feeling OK. I developed POTS postpartum -- actually, it all started the night I left the hospital. I didn't get properly diagnosed for months, so I pretty much stayed home and went to the ER twice, plus saw about a half-dozen doctors over the next six months, who all thought I was totally losing it and had postpartum depression. Please make sure no one talks you into believing you have postpartum depression (unless you feel you actually do, of course!). But I doubt you will. I am thrilled that you will breastfeed. Also, some people may try to talk you out of it, especially if you start to have any POTS-like problems. But just stay with it. I so regret giving up at 1 year; I should have kept going for another six months or so. I ended up stopping because I was sick of all my doctors telling me I would stop losing weight if I quit breastfeeding. And they were wrong, but it was too late ... my daughter looked at me like I was nuts when I tried to get her to breastfeed after having stopped for a month. She didn't remember what to do. I also had some ectopic beats at the end. I got very short of breath as well. I should also mention that my blood pressure dropped WAY LOW when I got an epidural (which I was also talked into because my midwife thought it would lower my BP, and I had preeclampsia). So beware of that. Is your BP OK at this point? Even a mild increase can be an early sign of preeclampsia, so just make sure you know what your readings are at every appointment. Take care, and keep us posted! Amy

Welcome, Kate! I can't sing any more because I run out of air way too fast. I was never a standout or anything; I sang in my high school choir and competed locally and regionally, but then hung it up. I just always enjoyed singing. I am very mad that I can't sing and I can't bowl (I know how stupid that sounds!). But I really enjoyed both hobbies and can't do either -- one because I get short of breath and the other because of my severe muscle loss and weakness. Amy

I would say I have swelling more than pooling ... but I am not really sure. My situation is strange because I had edema from preeclampsia, then had my daughter, then immediately developed POTS. So I always figured the swelling was a continuation from the preeclampsia due to microvascular damage. But I guess it's possible I am pooling blood and don't know it. I also have slight discoloration (mottling) and when I push on my leg with my thumb, I also get a white imprint for a couple seconds. Hmmm ... can the blood pool in your hands if you are lying down? Does anyone know? Amy

Below is a link to Jane Brody's column from earlier this week that runs in the New York Times. She was writing about a woman who did a Broadway play called "Well." She talks about how just because a physiological cause isn't found for illness, that doesn't mean the symptoms should be dismissed. And she points out that there's this brand of thinking that says if you are optimistic and take good care of yourself, you won't have health problems. We all know this is not true. But she sympathizes with those who have families and friends telling them they must not be trying hard enough to not be sick. It reminded me of a recent post by Stacey Yount about her family saying she doesn't do more because she doesn't try. Anyway, thought I'd share. You do have to sign into NYTimes.com, but it's free and I would highly recommend it. They also will send you headlines each morning tailored to the subjects you like -- i.e., all health stories, or food stories. http://www.nytimes.com/2006/04/04/health/04brod.html Amy

I took Plaquenil for about four or five months. My doctor was trying it to see if my POTS/chronic fatigue symptoms improved. It takes at least three months to start working, so you have to stay on it to see results. I did not experience significant improvement, but it was worth a try. Since you have Sjogren's, which is an autoimmune condition, you should be helped by it. The drug somehow improves inflammation-related autoimmune diseases -- an accidental discovery made by a researcher who was treating maleria patients many years ago. You have to make sure you get your eyes checked every six months while on this drug. In very rare instances, your vision can become impaired. But as long as you are followed by an eye doctor, it's nothing to fret over. Amy

Hi Sue, Just wanted to welcome you and say I, too, deal with having POTS, working and taking care of a toddler. I developed POTS postpartum and have been completely changed physically and mentally. What does your doctor suspect is going on with your blood sugar? Do you have any risk factors for diabetes? Autonomic dysfunction can sometimes accompany diabetes, but usually long after having the disease. Most people here have low blood sugar, I think. About your daughter -- I don't know what would cause those problems, but I understand why you are concerned. I would talk to her pediatrician or doctor first, to run basic tests (like blood sugar, etc.), then get her an appt. with a specialist if necessary. I hope it's nothing, but others are right in that POTS can potentially be inherited. I have no family history. Take care, Amy

Julie, Wow. That's a lot to be dealing with. I don't know anything about what's causing what, or what is POTS/not POTS. But I just wanted to remind you I went through a period of six months (starting with my onset of POTS after giving birth to my daughter) when I lost a ton of weight, resulting in a major loss of muscle and significant strength loss. I have recovered about 20 percent of what I lost, so I still am not good. But I am better than I was. I have no idea what was the cause in my case; I had every test under the sun. But it did eventually stop, and for the first time since, I gained five pounds about a month ago. (Unfortunately, it all went to my waist -- yuck!) But anyway, just wanted to say that strange, inexplicable things happen, and who knows what's going on. I would definitely get the cough checked out if you feel that sick. Are you having any difficulty breathing? Is the phlegm you are coughing up dark in color? Those would be warning signs of pneumonia. I hope you start to feel better soon. Try to take care of yourself, and rest. Amy

That's great that the valerian is working for you, Rita! I didn't have any response to it -- no adverse effects either. But I may try it again down the road, because I am weaning off all my meds right now. Amy

Ling, So sorry to hear you're dealing with that much pain. I guess it's all to prepare you for the pain of labor! Just kidding; I don't mean to make light of what you're feeling. We have to find some humor in the unpleasant stuff, though, or we'll all go crazy. I'd try to do some relaxation exercises and breathing techniques, or guided imagery to try and help you fall asleep and detract from the pain. There are many; you can look online or ask your doctor about them. I always was helped by a hot shower and soft music, too, plus I made my husband massage my sore spots every night for just a few minutes, and that helped a lot. Just remember, not long now ... the light at the end of the tunnel is in sight. Amy

Melissa, I sure hope you start feeling better soon! Amy

Hugs, Jan. Nina's right ... the cancer didn't spread, and that's great. Hang in there. Amy

Congrats, Morgan. You and your family look wonderful. Amy

Hi guys, These articles have nothing to do with POTS but because several others on the site have had preeclampsia, thought I would share. These are part of a series I did on preeclampsia, and the others are running on Thursday this week. I will post those when they go up on the Web site. Amy http://www.madison.com/tct/features/storie...d=76447&ntpid=2 http://www.madison.com/tct/features/storie...d=76448&ntpid=2 http://www.madison.com/tct/features/storie...d=76446&ntpid=2

Do you drink soy milk? Do you eat peanuts? Those are the two biggest offenders that I have found for me. Also, beans give me bad gas. I started getting severe gas (to the point that my husband asked if it was me or the dog, yuck!) about 8 months after developing POTS. My doc thinks I might have mild gallbladder issues, but says there's no reason to do anything about it at this point because I don't have pain in my abdomen. There's also the possibility of malabsorption, which is unusual but worth checking into -- you can have a blood test to look for this, I believe. Those are the two more problematic causes of bad gas, but for most people, it's just an IBS-type thing and a nuisance. I also have used Beano and charcoal. Charcoal does absolutely nothing for me. I also take acidophilus, which helps promote good intestinal flora. It's cheap, safe and worth a try. Or you could try a container of plain yogurt daily. Good luck, and let me know if you find anything that I didn't mention that works for you! Amy

I have postpartum-onset POTS, so I also didn't have heart rate issues until AFTER the delivery. I did have preeclampsia, and my daughter was born with intrauterine growth restriction and was low birth weight despite being just two weeks early. Please be aware of the signs and symptoms of preeclampsia; there is no written documented evidence that POTS increases your risk for preeclampsia, but at least a half-dozen women who visit this site had it. Good prenatal care is the best tool to monitor for preeclampsia, and there's really nothing you can do to prevent it. I should also say many here have had babies and no problems at all, while others have struggled with severe nausea and fatigue. But most have had normal pregnancies, from what I've read through others' posts on this topic. I would do a search on this topic on the forum, because it's been discussed many, many times. Good luck, Amy

I am short of breath no matter what position, though it does get better if I am flat. So yes, you can get SOB sitting. If this is a new thing, probably best to get it checked. Amy

That was the case for me on Effexor. It is the only med that has stopped the adrenaline rushes. But the first few weeks I felt extremely jittery and anxious. Amy

I can't breathe ever. I have had shortness of breath since my POTS began -- it was my first and remains my worst symptom. I have given up on trying to figure it out because I test normally on pulmonary function and echo. I totally understand how crappy this is, believe me! Amy

Just curious -- what are you/your neurologist/cardiologist wanting to accomplish with the aspirin regimen? I am taking one 81-mg aspirin every other day (because when I take it daily, I get these tiny pin-size purple dots called petechiae). But I take it because I have a genetic clotting disorder that increases my chances for a clot. I don't think I've read anywhere that POTS should be treated with aspirin, and POTS doesn't carry the same risks as heart disease. So I certainly wouldn't think it's necessary for you. But maybe you are taking it for another reason? Amy

I've never had an IV but would be willing to bet it would make me worse, because I retain fluid. If they don't help you, discourage the people treating you from putting one in. Amy

Mine were much heavier than I am used to for the first two years after developing POTS. I have noticed that the last two have been much more normal. Are you over 30? Because you are more likely to be at risk for uterine fibroids, which cause heavier periods. I would see a gynecologist and raise your concern. This problem is not necessarily linked to POTS, but in my case, I didn't have fibroids ... so I kind of think my heavy periods were a result of my body's hormones going wacky. Amy

I totally understand about not fitting into a certain illness category, Rossman. I also have symptoms in various organ systems and can't make much sense of them. But just because you have this overlap doesn't mean it's not general dysautonomia, or a mitochondrial disease, or a bizarre virus, CFS or whatever. So many people have symptoms that don't fit the mold. I don't want to discourage you from comparing notes with a Shy Drager patient, but I just want you to know it may be hard to judge your outcome and future by that -- the other person's prognosis obviously isn't good. So just make sure you remember you HAVEN'T been diagnosed with it, that's all I suggest. Have you been seen by a good autonomic specialist in a major city? I don't know your history but hope that you have had a complete workup. Take care, Amy