calypso

Right leg is worse for me. I think it has to do with those veins being in worse shape, for whatever reason. It doesn't occur worse in my right arm or hand, though. Amy

I was full term. I think that your restrictive lung disease and allergies, as well as GERD, could be linked to premature birth, because these conditions are more likely to occur in preemies. But as for the others, I don't believe there is a specific link. However, just based on common sense, it's safe to say if you are born prematurely -- especially as premature as you were -- then you are more likely to have certain health risks. Even if being premature is the cause, what can you do ... we all are dealt a different hand. I'm so sorry you've had to endure so many health conditions. Just keep persevering, and try to appreciate the life you have. Easy to say, I know ... I have to tell myself this every day! Amy

If you haven't been diagnosed with Shy Drager, I would be careful to assume your illness will take the same course. What are your symptoms? Many here faint and have dizziness, blood pressure fluctuations and other issues that are similar to Shy Drager. Perhaps you have POTS or another form of dysautonomia. Try to be specific in asking what symptoms you'd like help with to others here. I bet you'll find many others with similar issues. Amy

I absolutely feel better when I exercise. I sometimes feel exhausted by it if it's harder cardio-type exercise, like a very long, fast walk, or even a short jog. But I do Iyengar yoga 1x/week for an hour, plus work out on an elliptical trainer a few times a week for a half hour each time. I find that is the best combo for me. I also do some PT exercises with an exercise ball when I have a free moment and enough energy. On bad weeks, I do nothing. Last week was one of those because I had a cold/sore throat virus. I am now back on track. As for the paper writing, I have always had procrastination/attention deficit issues -- not in the clinical form, but more that I needed to take lots of breaks, couldn't focus, etc. I feel that it's difficult especially when the topic isn't something very interesting to you, so I always tried to pick topics that I knew something about or at least wanted to know something about, as opposed to those that might be easier to research. Just do your best and try to work in a place without a TV, radio, phone, etc. Schedule a break or two and try to set a goal -- i.e., finish two pages before taking the break. Good luck. I can't imagine having POTS in college. The brain fogginess, for me, would have been awful. Amy

Jenn, I have been retaining fluid since my POTS began. I have been told it also is probably leaky veins. I suspect that for me, I developed POTS just after having my first child, and I had preeclampsia with her -- which causes abnormally excessive swelling beyond the usual amount in pregnancy. I think that I was swollen for so long -- a few months -- that my veins either got damaged, or when the POTS kicked in, it did something to keep me on this fluid retention pattern. I really don't know much about why it happens, but I do know how it happens in general. The walls of the capillaries can be leaky in some people -- in your case, maybe because you have collagen issues. In others, they have high blood pressure or vein damage, causing the force inside the veins to build up until the blood has nowhere to go but to leak through the vessel walls. I had high blood pressure but don't anymore, so I can't figure out why I still swell. I believe you might be able to get a Doppler of your leg veins to see how your large veins are functioning. I was told I had "ideopathic edema," which means I retain water for unknown reasons. There are some articles I have found on this at the following links: http://www.fpnotebook.com/REN22.htm http://www.ncbi.nlm.nih.gov/entrez/query.f...8&dopt=Abstract http://www.kudzumonthly.com/kudzu/feb03/Swell.html Good luck, and wear your compression hose! That will keep your veins from becoming even leakier. Amy

Not every day, but I do have certain spots that, for a week or so at a time, will become hypersensitive and I can't even touch them without feeling pain. Sometimes they feel fiery; other times they just ache or feel bruised. Amy

I have a cold and also stay away from pseudoephedrine. I don't think it's worth the tachy. I use Advil, Chloroseptic throat spray, lozenges and peppermint tea and oil on my temples and chest. Not much else you can do. I also have heard Zicam may help but haven't tried it yet. Amy

Another thing you can try is going for whole foods, as opposed to processed (anything in a box is generally processed). Sticking to veggies, fruits, lowfat meats (chicken/turkey/pork/lean beef) and whole grains like oatmeal, sprouted-grain breads and such can really make a huge difference. Just because something is labeled "whole grain" or "lowfat" doesn't mean it's good for you. In fact, there's a huge link between insulin resistance, high cholesterol and processed foods. Amy

Did you say your heart stopped? Do you mean literally? Like in, you had to be resuscitated? Or do you mean you have ectopic beats that involve the sensation of your heart stopping? I have taken both Klonopin and Lexapro. I felt more anxious on Lexapro, which I took for four months. I now take Effexor instead, another antidepressant but one that also affects norepinephrine levels in addition to serotonin. I have taken Klonopin on and off -- but mostly on -- for 11 years. I have had no addiction problems with it and have taken various dosages. Right now I take 0.5 mg or 0.25 mg daily, depending on how anxious I feel. I would start with 0.25 mg to see how you respond (this is a half a pill) before taking a whole one. Lexapro must be tried for at least 8 weeks to see if it's going to work for you, FYI. Some people find much better success taking both an antidepressant and benzo like Klonopin together than with Klonopin alone. Amy

I had my daughter at 37.5 weeks, but only because I had to be induced because I developed preeclampsia. I also had mild Braxton-Hicks contractions at 22 weeks or so. I was told that is a very normal time to start gettting them; also, the ligaments are stretching due to the expanding uterus starting at this time. Try to relax and stay calm. Whatever happens is probably out of your control. Just take care of yourself, sit back and watch a true life miracle occur! Amy

Hayley, I'm going to chime in here and add that I do not think it sounds like you have conversion disorder. You have real problems that may defy diagnosis, but just because your tests are negative does not mean something isn't going on. I have swelling in my legs that begins as soon as I sit up and become vertical. By the end of the day, I am swollen to the point that I was when I was pregnant, before this POTS stuff all began. I have had a ton of testing and no one can figure out why I am retaining all of this fluid; however, my doctors have actually seen the fluid retention in my legs, so they know it is there. Just because you test negative does not mean that your symptoms aren't real -- that's my point. The other day a study came out that again made the point that women who have heart disease often have a certain kind that doesn't show up on any diagnostic tests because the plaque in their arteries is very evenly distributed and doesn't get all clotted up in one area, like it often does in men. These women are often sent home with "negative" tests, then have heart attacks weeks to months later. Again, a negative test only means that whatever your problem was, it either a) wasn't detected, for some reason or another; is not severe enough to show up; c) who the heck knows? Hang in there and please be persistent if you think you are ill. And by the way, you can definitely have emotional problems and still be physically ill with another condition. "Normal" people aren't the only ones who get sick! Take it from me -- I am surely not "normal." Amy

Nope, I don't even know what chia seeds are. All I could think of was that they had something to do with Chia Pets!! No, just kidding. But just an FYI that I am not taking them. Amy

I have had Jin Shin Do (same thing you mention), which is a body-mind acupressure form. I did not notice any improvement in symptoms. I didn't have it with the intention of trying to cure my POTS; rather, I am a massage therapist and another therapist I know used me as a guinea pig (she was getting certified in the modality). I only had one session. It is a very relaxing treatment, so I would think the results would be similar to that of acupuncture, since it stimulates the same types of energy points on the body. Some here have had success with acupuncture, but most haven't. Amy

I am a copy editor, plus I do massage therapy part time (lately, only 3-5 hours a week). The massage is difficult but I need the income. I try to do half the sessions seated and half standing, and that works OK. But my heart rate gets up there. The copy editing is great, except for when I have to do the front page of the newspaper on deadline. That can be pretty stressful. Amy

Hi Jessica! So nice to hear from you, though it's too bad it's because you aren't feeling well. I second Katherine's ideas on breastfeeding cutback. I assume the little guy is eating more solid foods (cereal, etc.) and that you are breastfeeding less, which means your prolactin levels are dropping and that can really do a number on your body. I also felt a lot worse about seven months postpartum -- from that point to when my daughter was 14 months, I had a LOT of palpitations/runs of tachycardia. I assume you've tried to investigate why Alex isn't sleeping (I think his name is Alex, right?). Does he have reflux? Is he possibly having teething issues? Have you talked to his doctor to try different approaches to structuring his sleep schedule? Did you read that famous book about how to get your baby to sleep through the night? (I never read it and can't think of the name, but all my friends swear by it.) He really shouldn't be waking more often than once a night at his age. I know sometimes there's just nothing you can do, but just an idea. I also would try to ask another mom you know to maybe swap a couple hours where you could have her come and watch your two, and you can go watch hers. I don't know what kind of social network you have, but I am sure that someone from your La Leche League group or something would help. I think I remember you going through training for that, so I am figuring you go to meetings. A lot of people are very generous with their time -- all you have to do is ask! I wish I could fly down there and help you myself! I've been there -- well, with only one child. So I guess I haven't TOTALLY been there. But I understand being totally exhausted and feeling like it's never going to end ... but it will. Hang in there and let me know if I can help you in any way. Amy

Tearose -- welcome back! I am sorry the full-time thing didn't work out for you. But please be happy that you can work part time and don't feel as though you aren't contributing to society and to your family income. I work part time and bring a fair amount of money in. Obviously not as much as my husband, but I also take care of our daughter and my husband never has to lift a finger around the house -- I manage to make almost all meals, clean, do laundry, etc. I don't think I will be able to work full time anytime soon, nor do I want to, for that matter! Just try to figure out what you enjoy doing, what tools you need to do it, and come up with an innovative idea for a job or for a way to work part time -- whether that be job sharing, working from home, etc. You are a determined and gutsy woman, so I know you will make it happen! So nice to see you're back here. Amy

I have these flushing episodes that sound exactly like MCAD. But they only occur sporadically -- for instance, in the last year, I have had four, but three of them were last spring, and since going on a small dose of Effexor, I only have had 1 episode. Why would beta blockers be harmful to people with MCAD? I saw that in the article but failed to understand why this would be. I do take a beta blocker and wonder if it is a bad thing for me. But without it, I think my heart rate would be too high -- to the point of potentially causing heart damage over time. Amy

I have a super-high metabolism -- I eat about 2,500 calories a day and can't gain a pound. I lost 20 pounds when I fell ill and haven't gained any back. I am sure my weight loss is adrenaline-related/POTS-related. I don't know about weight gain, though. Just thought I'd share my experience. Amy

I second Lisa on the Carnation Instant Breakfast. They make a low-carb version as well that doesn't have as much sugar, which might be better if you are sugar-sensitive. The nutrients are otherwise the same. My sister, who is in family practice, said she talked with a dietitian about nutritional drinks and that this drink is much cheaper than Ensure and has almost all of the same vitamins, plus less sugar. Amy

Thanks for all of the responses! This red-in-the-face thing occurs when I am sitting and talking to groups as well, so I don't believe it's the standing (although I do get a fair amount of symptoms from that, too). But I think some of you are right in that maybe I am anticipating symptoms and just am not realizing it. I guess this has always happened to me even before POTS but much more mildly. I just hate feeling uneasy, especially when there's absolutely nothing to fear from talking to a bunch of people who are no more or less important than I am. It is so irrational, yet my brain still makes it happen. Very strange. I guess I'll have to start going to Toastmasters or something! Amy

I am wondering if there is some sort of autonomic response that would predispose those of us with POTS to having signs of social phobia -- not in the emotional sense, but more in the physical sense. It seems that lately, when I have to talk in front of a large group or even in front of a small group of people at work, I have been turning red in the face for no apparent reason, feeling nauseous, becoming dizzy. I can't figure this out, because I have always been very social and don't seem to have this kind of problem. Plus, I am taking an antidepressant that is supposed to help anxiety and phobia, and I take clonazepam (which has sedative/tranquilizer effects). Does anyone else here notice any problems in this department either pre-POTS or post-POTS? I am starting to become embarrassed about looking embarrassed! Amy

Thanks for adding this info, Katherine! I am probably going to be attempting a second pregnancy later this year, and this is the kind of positive talk I need to hear right now. I know it could go either way, but I am going to listen to reason and think that it will all turn out just fine. Maybe when I leave the hospital this time, my POTS will go away instead of developing like it did the first time around! Probably wishful thinking, but that can't hurt. Amy

Stacey, Hope all goes well with the surgery and with your new PCP. Amy

I have seen this issue of difficulty with light come up here before. Lights do not bother me, but sound does. On my bad days I cannot handle even the normal volume of voices around me. Seems like all of our senses can be thrown off somewhat by autonomic problems. Amy

Not me. I've gradually adjusted to having POTS, and even though I have good days and bad, the good outweigh the bad. I still have many of the symptoms I've always had, but I have adapted well. And I feel like I will continue to get better, but it may take many years before I am normal again. Or I may never be normal again, but oh well. Amy