MomtoGiuliana

I hope it's sugar-free and high in salt and protein! Merrill--sorry about your night ordeal and hope the answers come soon. It is comforting to know, at least, that your doctor isn't highly concerned. Katherine

Mindy I was also worried about you and glad to know you are at least well enough to log on--and that you have some more work-ups coming up with a good doctor. Sorry you are feeling down. This time of year can be dreary, which doesn't help--especially when, on top of it all, you can't participate in the holiday activities as you want to. Whenever you want to sell your angels, I'm ready to help you display their photos on a webpage. Katherine

Beverly What was the test that initially determined that Nicole's mercury levels were high? Perhaps the next step is to have a test that definitely has scientific validity and would not be complicated or hard on her--like a hair, blood or urine test. I would really question an assertion that she could have dangerously high mercury levels, unless she has had some unusual exposures--industrial, for example. No matter how many fillings you have, they are nowhere near enough to poison you, or her in utero. All of us have some mercury in our bodies--mainly if we eat fish, fish oils, get exposed to broken thermometers or fluorescent bulbs (see some of the links folks provided for the primary sources). While not good to have these exposures and we should always try to minimize them, these quantities are not very likely to make someone ill with POTS. The methods for removal of heavy metals are used when someone has clearly had a toxic-level exposure as they are hard on the body. Also, such methods cannot remove all of it, only enough to bring the level down. I know you are trying desperately to help you daughter get well. Unfortunately when we are at this point, we are open to trying many different things and accepting alternative explanations. There is also a whole industry out there that thrives on this desperation. It gives true "alternative medicines" a bad name. I have been there too. Please be careful. Particularly b/c people with POTS do tend to be even more sensitive to medications and herbal preparations, etc. I agree with goldicedance. See if another specialist in endocrinology and/or dysautonomia can evaluate her and work with her on treatment. It does sound like she has multiple issues going on--and as we well know, POTS is exaccerbated by underlying conditions of all kinds. It's good to hear that she is showing some improvement these days. Katherine

Beverly I have also never heard of this test. Why not a blood, urine or hair sample test? Do you think there is good reason to suspect that Nicole would have high mercury levels? I have had a negative experience with a Naturopath, so I am biased. But, first, I agree with briarrose. If Nicole doesn't feel comfortable with the test, she should put it off. Don't let the doctor pressure you. This is one of the problems I had with the naturopath I saw. She was skillful at pressuring me to make decisions about her recommended tests and treatments, and I didn't take the time I needed to research on my own (primarily talk to my doctors) or get her to provide me with complete information so that I could make as informed a decision as possible. Could you seek a second opinion? Perhaps talk to another doctor about this test and ask what other options might exist for getting a handle on mercury levels and then what options exist for treating it. I do believe that alternative medicine does offer help with many things, but I think it has to be approached with caution. Many treatments have not been subjected to scientific scrutiny and could be unsafe. Here's what I found at the Agency for Toxic substances and Disease Registry (Center for Disease Control): http://www.atsdr.cdc.gov/ "Is there a medical test to show whether I've been exposed to mercury? Tests are available to measure mercury levels in the body. Blood or urine samples are used to test for exposure to metallic mercury and to inorganic forms of mercury. Mercury in whole blood or in scalp hair is measured to determine exposure to methylmercury. Your doctor can take samples and send them to a testing laboratory." Where can I get more information? ATSDR can tell you where to find occupational and environmental health clinics. Their specialists can recognize, evaluate, and treat illnesses resulting from exposure to hazardous substances. You can also contact your community or state health or environmental quality department if you have any more questions or concerns. For more information, contact: Agency for Toxic Substances and Disease Registry Division of Toxicology 1600 Clifton Road NE, Mailstop F-32 Atlanta, GA 30333 Phone: 1-888-42-ATSDR (1-888-422-8737) FAX: (770)-488-4178 Email: ATSDRIC@cdc.gov Hope this helps. Take your time with this and make sure all your questions are answered adequately. This is the kind of thing that some "alternative" practitioners will make unsubtantiated claims about--both testing and treatment.

JLB So sorry you are going through a difficult flare up. Are you on any meds or have you been? Is there anything you can change with your treatment that you think might help? Hope this is short-lived. In the meantime, please try to take care of yourself with extra healthy whole foods, rest, and any exercise you can tolerate. We're here for you and thinking of you! Katherine

veryblue I am sorry to hear that you do not have the support you need right now. I also understand how frustrating it is to feel sure you have been misdiagnosed. I understand why you were using the term "freak"--but it has connotations that can make the intended meaning easily misconstrued. I have a couple of questions, if you want to answer them. What are your symptoms? What are you unable to do that you were formally able to do? And, besides posting to this forum, what other things are you doing to try to get a handle on your condition? You said that living with this (whatever it is) is not an option. To a degree I think that is a good approach to illness, but sometimes we do have to accept challenges and changes in our lives--it is part of life--and then find a way to manage them and keep living. I have only come to understand that though over time--and I am over a decade older than you are. Katherine

This has been very interesting. Thanks everyone for responding to my curiousity. Emily--I cannot believe how large your family is! I have only four first cousins. My daughter has ONE cousin at this point. Hoping for a few more! I'd love to hear from you and Jessica any thoughts you have about your experience as "onlies" and any advice you have for me as possibly the mom of one (but maybe not on the forum since that's a bit ot!) Everyone, keep your experiences and thoughts coming, if you want to share. Katherine

That's wonderful, Emily. Thanks so much for sharing your courageous experience. I am so glad it was a positive one, too. I hope the experience will help continue to give you hope and confidence that you will recover to a highly functional level, eventually. How hard it is to explain to people you are ill--even harder, to so many people from your past. And how hard it is to face the outside world again after so much time away from it all. I am glad you have such a loyal and understanding friend, too. Rest and be very proud of yourself. May this be a first step in your journey back to wellness. Katherine

wsc--I also come from a big family--four girls. My mom also had no problems. The whole thing came as a big shock to me (being ill with pregnancy). I am so so sorry for all the challenges you and your daughter have been through. Thank goodness she is well now. I was also active and felt good before pregnancy--and I also plan to be that way again! I wish you the best in realizing your desire for another baby. opus--interesting how our bodies do sometimes seem to talk to us. veryblue--POTS does not appear to affect longevity, btw (you mentioned all the ages your relatives have lived to). It just can affect QUALITY of life--as many of us know. Also, please don't think of yourself as a freak (although I realize you are probably talking tongue-in-cheek), or intimate that others are. From some of your statements I get the impression you are a perfectionist--correct? Challenges come in all forms in life. Don't let this illness define YOU.

Merrill Congratulations!! I am so happy to read your big news. I hope everything goes very well. I will be very interested to hear about any and all the details you are willing to share with us about the process--and to see the pictures of your little one. As far as the energy--I do find it, although some days I wonder how--as do mothers with no health problems--especially those of us over 35 What I have found is that my daughter keeps me going, even on the hard days. Hopefully you have a support network of family and friends who can assist you, too, when you need it. Happy Birthday, too. Hope you get over the virus soon. Katherine

dizzy I understand. I have the same concerns. I pray that my daughter will be free of this--as has been my mother's experience, even tho my grandmother had a lot of problems. We are considering adoption, but no decision for sure yet. Katherine

Hi geneva I am sorry you had a difficult time as I did. How extremely frustrating that you had even fewer answers than I did, 2 years ago. Why the brain scan--what would that show? My doctors ask me if I am planning another pregnancy as if it were something I would actually consider. It seems too dangerous/risky to me. Regarding bp, I always had borderline low bp until end of pregnancy. I am still having (although not as significant) periods of high bp. Katherine

Wishing you peace. Katherine

I have noticed a fair number of only children on this forum. My daughter will be an only child due to my experience with pregnancy/delivery/post-partum. My mother was an only child because my grandmother had the same problems I did. This question is just out of curiousity. Of course POTS has many different causes. But I am interested in the experiences' of others' mothers with pregnancy and if there may be a genetic connection in these cases. There does seem to be a connection between POTS and preeclampsia and pregnancy-induced hypertension and the associated complications--the most common medical complications associated with late pregnancy. BTW, only-child families are increasing in prevalence for lots of reasons. I read that one in five Americans under the age of 18 is an only child today. Katherine

Hi Amy One good thing about low blood pressure in sleep--you are lying down so your body is able to better compensate--you are less likely to pass out. I am quite sure that POTS has never caused anyone to go into a coma. I DO understand your fears and concerns. Please feel assured that nothing life-threatening will happen to you in your sleep due to POTS. Katherine

When my POTS was severe, my blood pressure was elevated, generally (except during pregnancy when it was where it normally has been--110/70 or so). Since then, I still have episodes of elevated blood pressure, but that seems to be getting more and more transient. (When I have taken a low dose beta blocker, of course, over the past almost 2 years, that knocks it down to the 90/60 range or lower.)

Only when my POTS symptoms were severe did it bother me.

My bp can be pretty low (80/50) or higher, like 120/80. I take a low dose beta blocker in the AM b/c that's when my tachycardia seems to be the worst. I think my fluid levels are generally fine b/c I am not losing so much fluid through frequent and copious urination like I used to be. So, I also wonder, like you--what is causing my tachycardia at this point. It seems my body is still inappropriately releasing adrenaline--but what is triggering this? I also have night episodes of tachycardia. I wake up and notice that my heart rate is pretty fast. I try to ignore it and relax, but it is bothersome. Katherine

My sister is an attorney but is taking a class in epidemiology at her local university out of interest. All of the other students are nurses. She has heard numerous discussions among them, informally and in class, regarding patient care, of course. In particular, she told me that there have been several discussions about the large number of female patients coming into the ER or to their physician complaining about symptoms "that don't exist" and that this large number of women are attention seekers with no illness. Their enablers come in the form of husbands and family members. Why would so many women put time and energy going to doctors, making up symptoms? Why do these nurses think this? How many patients with dysautonomia have these nurses seen and dismissed along with doctors? Is this a prevalent attitude among nurses--that there is a large contigent of women out there making up symptoms to get attention--and how can this change, if so?! Anyway, my sister's description was very aggravating to me, and just another example to me of all the work we have to do (since no one else seems to be) to educate medical caregivers on this illness. I think I am going to give her handouts on dysautonomia to give to them all before the end of the semester! Katherine

I just want to add that there are some GOOD endocrinologists out there. I have an excellent one, who is knowledgeable about POTS (even tho I don't see him for that--I see him for thyroid) and he is open to alternative medicine to a point. He is a DO, and perhaps that makes a difference. Before him I saw an AWFUL endocrinologist who I have no doubt mis-diagnoses CFS as depression, etc. In general, in my experience, I prefer DOs to MDs. They basically get the same training, but it always seems that DOs tend to be more holistic in their approach to body systems than are MDs. BTW, dancinglight, (and we discussed this before I think!) it was my current endocrinologist who told me absolutely no when I asked him his opinion about the bovine adrenal hormone. I had seen a homeopathic physician out of desperation during pregnancy and she had prescribed it. I was dubious about its efficacy and safety. (She also prescribed some tea and some other things that were quite expensive and probably benign, but did little good for me.) Now I am digressing...! Happy Thanksgiving to all. Katherine

And yes, Gena is so right about being able to get back to active things. I was so sick I was bedridden in 2002. Now I can climb three flights of stairs multiple times at work with barely a thought; I do yoga, walk, run all around with my toddler, etc. Yes, I have to be more forgiving of myself and there are days when exercise is harder, but overall I can be active and expect that I will continue to improve my fitness over time.

Swelling of lower extremities is a common symptom of POTS. I think it can also be a side effect of beta blockers--if your dose is too high? POTS patients definitely do not want to take a diuretic, as you are already volume compromised. Try elevating your feet for extended periods, if that is possible. Does the swelling go down at night after you've been in bed for awhile? Many of us get those awful muscle cramps/charlie horses. I get them at night just as I am settling down to sleep at times. There have been some discussions on this topic. I think some people have found relief with magnesium supplements. I haven't tried that yet. If this swelling is a new symptom and is more than just mild, I would recommend that you contact your doctor. Katherine

Where are you located? Did you look at the list of doctors on this site?

Nina's suggestions are great. You did the right thing to call your doctor, for peace of mind. I'm glad they reassured you. Try increasing your fluids and salt when you have days like this. It can help with the palpitations (but not always). Remember that your heart is a strong organ. It can withstand much more than we usually realize. Keep writing to us! Many of us have been there--and survived. But we know how very hard it is when it feels like your body is falling apart. Believe that much better days are ahead. Katherine

Wow, I am ALWAYS learning all kinds of things on this forum. I have never noticed an effect on my heart rhythm from deep breathing--BUT, this is strange, but I guess has the same sort of explanation--after I have eaten and I can feel food leaving my stomach--I get palpitations that coincide. I have always wondered what was going on. When it started about six years ago, it freaked me out, now I barely notice it (and it isn't that frequent anymore). Also, does anyone know a reason why someone would become deficient in B vitamins if he or she is eating a balanced, whole foods diet? Does it have something to do with ANS dysfunction too? Thanks, Katherine