calypso

Ling, I am so, so happy to finally hear from you! We were all thinking about you and were worried that since you hadn't written, that something was wrong. I am glad to hear you made it through the pregnancy and had a beautiful little girl. So did they ever figure out what was wrong postpartum? Anyway, so relieved to hear from you and hope that you continue to improve and that you are able to spend lots of time with your daughter. Amy

Oh, no! My daughter loves the Wiggles, much to my dismay (because then I end up humming "Fruit Salad" and their other catchy songs). His illness could be so many things, though -- maybe a virus, CFS, some disease that bloodwork hasn't picked up yet, etc. Amy

It is a sad state of affairs for the health care system when hospitals are sending people home 30 minutes after fainting. I would think that at the very least, they would give you a place to lie down and tell you to take your time. But when people are being pushed through like an assembly line, I guess what happened to you is to be expected. I don't know what you can do re: transportation. That's a tough one. I think doing what you're doing -- exploring coverage for an ambulance to take you home -- is a good idea. Although will the driver have to take you back if you faint on the way home? I would think the ambulance company would not want to have that liability, which then puts you in a catch-22. I wish I had more answers and less cynicism, but I don't. Sorry you have to deal with this, Ernie. Amy

Katherine, I had an inner ear disturbance about five years ago, pre-POTS. It sounds a lot like what you're feeling. I would be standing up and all of a sudden, it felt like I had done like five flips or spins, and then was stopped suddenly. This would start and end in a matter of a second or two -- it was so odd. It took almost a month to get rid of it and I have no idea what caused it or made it better. I was playing in a volleyball league at the time and I was the setter, and would be running all over the court and having to turn back and forth a lot. I ended up having to sit out the second half of most games because I felt motion-sick after a while! Of course, now what I would give to be able to play a half a game ... Hope you make a complete recovery quickly! Amy

I bought Natrol brand Co-Q10 from the Vitamin Shoppe Web site. It was the cheapest I could find after a couple hours of searching online. Is it at all possible that the mitochondrial dysfunction develops as a result of POTS? Does anyone know whether that can happen or if the dysfunction is always present from birth? Just curious how this works. Amy

I have only had that happen twice, during POTS attacks when my heart was pounding and I got very flushed. Throat closing is often a sign of an allergic reaction, but I don't know about an all-the-time thing. Might want to check into your mast cell activation -- a mast cell activation disorder can sometimes present this way and seem a lot like POTS. Amy

Jennifer, I feel so bad that you can't figure out the hair loss. And you definitely had your thyroid levels checked, right? I had a lot of hair loss about a year postpartum, beyond the usual posptartum hair loss that I had at six months. I found that for me, it seemed to be stress-related. I don't know if this could be a possiblity for you or if you started getting the anxiety only recently, but have you tried meditation or guided imagery exercises? These have saved me from depression and from having POTS attacks for sure. Again, you may definitely have a medical problem that would explain the hair loss, but it is also possible you don't. Which means I would try anything at this point to see if it helps. Jon Kabat-Zinn's "Wherever You Go, There You Are" CDs are what I use and I borrowed them from the library at no cost. This form of mindfulness meditation has been scientifically proven (even by the AMA and Western medicine) to work to lower BP, reduce heart disease rates and fix all other sorts of maladies. I would also go out and buy some very interesting and neat scarves, headbands, etc. -- whatever makes you feel better and will help you get through this period. Amy

The difference for me w/ panic attacks vs. POTS hyperadrenergic attack is I feel scared with the first, but not with the second. I tend to get more flushed, I start to feel like I'm choking, and my heart rate gets higher w/ the POTS attack, and I tend to get very weak in my muscles. With a panic attack, it's more of a feeling of disorientation, tingling and numbness, and fear. However, I treat them both the same. I usually take Klonopin if it lasts more than five minutes, plus I lie flat (which is hard to do with your heart pounding out of your chest, but it works for me). Amy

LindaJoy, I was under the impression that your entire Mayo visit was a second opinion to your treatment at Cleveland. Maybe I am misunderstanding. But if this is a second opinion, your chances of getting another opinion authorized are pretty low -- this is not meant to zap your spirits, but I'm just being honest. Mayo and Cleveland are two of the best research centers in the country, and maybe even the world. I have had fasciculations for three years and for the first year and a half of POTS had muscle wasting, and had an EMG. It showed nothing. This test doesn't really say much. If you want a muscle test that absolutely, definitively will give you an answer, the muscle biopsy is the gold standard. But it really doesn't sound like you have a muscle disease. If you had Shy-Drager, it would have been detected by now. People who have Shy-Drager tend to faint due to BP dropping to nearly nothing when they stand, and they also tend to be much, much older than you and don't usually have POTS. I would not be worried about this. I would probably be more worried about the mastocytosis and the bladder issue -- because the bladder thing may be an infection of sorts (although you've probably been tested for that). Several others here have problems with incontinence and no answers either. I so wish you could get a clear explanation of what was going on, but sometimes you have to just try and treat the symptoms as best as possible to function as well as you can. Never give up on finding answers, but also try not to wage your bets on it happening. Hang in there and good luck. Amy

I only took a sulfa drug once and was declared allergic to the medication, although I did not technically have breathing issues or anything like that. I vomited like three times and got a rash. Just wanted to say good luck and I hope you become more tolerant of this med over time. Amy

There is a woman who posts here rarely, and her name, I think, is Hayley -- and she has had at least two blood clots. You could try sending her a personal message. Having used this board for nearly three years, I would say there haven't been too many here with blood clots, so in my non-medical opinion it's probably not statistically significant in the POTS population any more so than in the general population. Amy

Sara, I have had POTS for nearly three years. I haven't gotten much better yet, but I really do hold out hope that this thing will someday just up and go away as fast as it came. I also suffer from muscle symptoms -- i.e., weakness and wasting. I have found physical therapy and doing any exercise possible to help. Even if I feel like it's going to kill me, I drag myself out to go for a walk, get on the elliptical machine or do some simple PT-prescribed strengthening exercises. If you haven't had PT, ask your doctor to refer you. I also have found cod liver oil to be of benefit, I think because of the vitamin D. There is quite a bit of research that any disease autoimmune in nature (which some cases of POTS are) can be helped by vit. D. Seven months is actually not very long -- here. I know it can feel like an eternity, but just know that many here were very sick the first year and then got a lot better. I think I've heard the figure of 5 years tossed around as an average recovery time. Amy

I have found that soy or beeswax candles, even if they are scented naturally, do not bother me. The beeswax ones are clean-burning and have a natural honey smell, which is nice. I use these for tea lights and get soy candles in the larger size. Amy

Emily, Hope you have a great birthday! And what's even better is you are turning 31 before me! Just kiddin' ... I'm right behind you -- I will be 31 in Jan. Amy

Thanks for sharing your experience, Christina, and glad you finally got a proper diagnosis. It's good to hear positive stories related to POTS patients & pregnancy! I seriously have no idea if things are going to get better or worse, but I am obviously thinking and hoping they'll get better. I am having some trouble keeping my heart rate down, but my doc does not want to medicate me w/ beta blockers unless I am extremely symptomatic (he said unless I have significant periods of chest pain, shortness of breath or fainting, no meds). My heart rate is often in the 100s and up to 120 from light activity; I'm just hoping I can keep it here and not have it going higher as the pregnancy progresses. Keep in touch and let me know when you get closer to having your baby! Do you know what you're having? Amy

I get fairly regular massages (monthly or every 6-8 weeks), and these tend to quiet down my nervous system as well as help with any aches and pains I have from the muscle weakness that I developed as part of POTS. I have taken a slew of various herbs and supplements, from bovine adrenal glands ground into vitamins to amino acids, Co-Q10 and concoctions from an acupuncturist. The only ingestable thing I have found benefit in is cod liver oil, which is practically mainstream these days -- most people I know are taking some form of omega-3 fatty acids. I also find aromatherapy helpful in acutely stressful situations or when my nervous system is running on overdrive. And I can't say enough good things about yoga and meditation, which are good for anyone -- including people with healthy bodies in balance. I agree that the whole Eastern/Western thing is bizarre these days. So many people are taking advantage of treatments that have Eastern origins that they are hardly alternative. I guess if you define "alternative" as not wanting to immediately pump my body full of pharmaceuticals, then I am pro-alternative. Of course, there are prescribed meds out there that I have functioned well while on, and I'm not shunning those. Amy

That's great news that you found a doctor with good knowledge of EDS, and who's willing to work with you. I hear a lot of similar stories about children with challenging behavioral issues from my mother-in-law, who works with that population. She always has a new bruise or skin injury. You must have a great deal of patience. Just know that this work is so valuable, needed and appreciated, whether you hear that or not. that often is what helps my mother-in-law make it through the day. Amy

For those who have tested positive for Lyme well after the fact and have symptoms ... see link below: http://www.journals.uchicago.edu/CID/journ...4918677970Guest Amy

That is so horrible that you were forced to work full time again. Maybe it's good that you aren't with that company any more because you never know if you could count on them if things got really bad. I would try and find a part-time job that was just a day or two a week. I think you can pull it off. Try to go for something low-stress and simple. If it doesn't work, it doesn't work. Also, you are not defeated. These moves are temporary, and you have to understand that so, too, are your emotions and state of mind. I think in time you will realize it's not a case of win or lose but just what you need for now. Good luck, Amy

I have this problem on occasion and don't know why it happens. My body seems to hold water in the wrong places -- I get some swelling in my legs, for instance, but will have drank a whole bunch of water that day and still be thirsty. I think it just goes to the wrong places. I'd wait another day and see if it passes -- unless, of course, you feel ill or have other symptoms. Amy

I know people who are on gluten-free diets that improve symptoms with various chronic diseases, even though their tests say they aren't actually gluten-intolerant. I say whatever works is a good idea to try. It's certainly not essential to eat gluten; just make sure you get enough fiber through other grains. Amy

That's probably the best place Linda could be ... good luck in finding some answers and measures that will help her improve. Amy

Saw this in this morning's medical briefs I get via e-mail through JAMA: Delayed Orthostatic Hypotension Isn't Rare In more than half of patients with OH, blood pressure began to drop at least 3 minutes after tilt testing. By Allan S. Brett, MD August 15, 2006 Covering: Gibbons CH and Freeman R. Neurology 2006 Jul 11; 67:28-32 You have to pay for access to the article, but you could also probably view it at the library if your library gets JAMA. Amy

Anna -- Two babies? My goodness. I did have an eight-week ultrasound ... I'd hope that would differentiate between one or two babies, but who knows? I suppose anything is possible. I think I just have to accept that I probably won't feel as good as last time around because I didn't have POTS then and now I do. And hopefully things will improve in the second trimester; they usually do for most people. Even if they don't, at least I know that in seven months this will have to be over! I'm currently ending my 10th week, for those who asked. I'm due April 21. So I am at my peak for nausea and fatigue. Corina -- I think my daughter is pretty excited about the new sibling, except she told me she only wants a sister! I know she will be fine either way, but I thought that was funny. Carmen -- I did have preeclampsia last time, so I am very, very familiar with every warning sign, and my OB is watching me very closely. I know that last time my BP gradually climbed, and because it started so low, I think my midwife did not take my increase as seriously as she should have -- which is why I have a doctor this time. But preeclampsia does not occur until after 20 weeks, according to every authority on it. If my BP goes up before that, it would be considered plain old hypertension and treated with medication. But so far no increases, just swelling that for me is not totally abnormal; I've retained some water ever since I had my daughter, and my doctors have no idea why except that they think it is somehow POTS-related. Thanks for all of your support. Amy

Breathing can definitely be affected by non-lung causes, like autonomic disorders. Breathing was the first thing that was hit in my body by POTS and it drives me batty. I think like Nina said, once you start paying attention to it, you actually have some control over it. I think I pay too much attention to it and it makes me feel worse. Just want you to know I have this problem, too, and sympathize! Amy