MomtoGiuliana

I feel as Michelle and others have similarly expressed. When I had severe POTS symptoms, bedridden, I was definitely an "ill" person in my mind. Once I was diagnosed though, and learned more about the diagnosis, I certainly believed that one day I would be back to "myself". Now my symptoms are mild and some days I don't think about POTS at all. I know I am slightly challenged by my remaining remnants of the condition, but I wouldn't let it stop me from doing many things (but I probably won't climb any mountains, for example). In addition, I've always known, even prior to diagnosis, that my strengths did not lie in physical stamina. It was always harder for me than others to do physical things--like climb, run, etc. So, that has always been part of my self-image, too. But, that has not kept me from being as active as I can be with walking, yoga, kayaking and other activites I enjoy. We are all at different stages and have different levels of challenges with this condition, as Michelle said. For this and other reasons, we each have our own self image, and each is valid, because that's where we are. I do agree that positive thinking is vital for healing of any kind, but it is not always straightforward/easy--and in fact that's one reason this board is so helpful for me, and I know for many others too. Katherine

Interesting! I was planning on asking my doctor that question when I see him next week. B/c it seems like my beta blocker doesn't work like it used to. I didn't used to have any tachycardia on it, now I do. Of course I am on a tiny dose, but all my other POTS symptoms are basically gone (or just very mild usually). Anyway, I'll let you know what he says. Katherine

Jessica So great to hear from you on the board again. I hope you start feeling better with this pregnancy soon. How is the nausea these days? How is Ethan doing? Happy Birthday to him day after tomorrow, btw! I'm glad you have a doctor who has performed exhaustive tests and it's great to have some possible leads on what may have caused your POTS. Regarding the borderline positive test for Lyme--what test found this? I am only curious b/c I also had a "borderline positive" result with the Western Blot test ( positives for 2 antibodies--if that makes sense). However, I was told by both my primary care doctor and a neurologist, who treats Lyme all the time, and is a bit of a specialist in it since she worked in PA for awhile where Lyme is getting more common, that this was not a cause for concern or warranting treatment. What it shows is a POSSIBLE past exposure to Lyme. This was kind of confusing to me. Back in 2000 I had a tick bite that grew to the size of a quarter and followed by a high fever. My doctor immediately put me on a regime of antibiotics. I never had any further symptoms. So, perhaps that exposure explains my results. ANYWAY, Lyme disease diagnosis and treatment still seems to be a bit of a puzzle. In my case, I do not believe Lyme infection is related to my POTS. I started getting POTS symptoms prior to that tick bite event. Anyway, it doesn't sound like this is anything you need be alarmed about (these positive tests) and can address later after pregnancy, if need be--which is good news! Take good care. Katherine

Some of the most beautiful women in the world have grey hair. Truly. In our western culture we are caught up in this very superficial concept of beauty sold to us by the cosmetic and other industries. In many non-western cultures, the older you are, the more revered, and a grey hair is a welcome event in one's life. BUT, at the same time, if coloring your hair is a small thing that makes you feel good, then perhaps it is worth doing. I think there are dyes available that are less harsh than the mainstream hair dyes used by most salons, btw. Katherine

tearose--note it is a representative of the cosmetic industry making the claim that the substance cannot affect brain cells. I agree that this claim is questionable without further study. So, not only should we eat a variety of foods, to reduce exposure to any particular chemical contaminant, we should also use a variety of shampoos and conditioners for the same reason! Katherine

corina--this is from drweil.com Your question made me remember I had read this on his website (it was posted in March 2004). I am also getting gray hairs! I was thinking about having something subtle done with the color--but reading this again is making me think twice. Katherine "A recently published study from Yale University School of Medicine adds weight to earlier reports that long-term use of dark hair coloring may significantly increase the risk of non-Hodgkin?s lymphoma, a malignancy that occurs in the body?s lymphatic system. However, these findings apply only to women who began coloring their hair before 1980; risks were greatest for those who dyed their hair a dark color eight times a year or more. The study was published in the Jan. 15, 2004, issue of the American Journal of Epidemiology. This isn?t the first study to link hair coloring and lymphoma. A number of earlier ones had identified long-term use of dark hair coloring as a risk factor, but others found no such association. One of the problems with these earlier studies is that none identified hair coloring products as the primary focus, and thus didn?t collect the details that might have given us some insight into why and how hair coloring might be linked to lymphoma. The new study found no increased risk of lymphoma among women who began dyeing their hair after 1980 - no matter how often they applied color. This may be due to changes in the dye formulas (perhaps as a result of the elimination of coal-tar ingredients after they were found to be carcinogenic when fed to lab rats and mice). But the researchers also raised the advertisement possibility that women who started coloring their hair after 1980 may not have used the dyes long enough to see any adverse effects. The Yale researchers are now studying whether any genetic factors might make women who use dark hair dye more likely to develop lymphoma. The incidence of non-Hodgkin?s lymphoma has been on the upswing, rising 73 percent between 1973 and 1991 and continuing to increase ever since. Incidence rates are 60-percent higher than normal among AIDS patients. Exposure to pesticides and other environmental toxins also seem to play a role (pesticides have been linked with the disease among farmers and higher than normal rates occur among dry cleaners, rubber workers, aircraft maintenance workers and petroleum refining workers). In general, I discourage people from using hair dyes. Artificial colors are as suspect in cosmetic products as they are in your food. When you apply hair dyes to your head, they're absorbed through the scalp, where there's a very rich blood supply that may carry them through the body. In addition to non-Hodgkin?s lymphoma, there has been some speculation that hair dyes can increase the risk of bladder cancer (because the chemicals in the dye are absorbed, and concentrate in the bladder). Here, too, dark dyes are of particular concern, because they contain a higher concentration of chemicals than the light ones."

Hi Jody What does your doctor expect to learn from NIH? Most of us have not been evaluated by NIH, yet are being treated. Katherine

Merrill Just thought I'd chime on the arm symptoms--when my POTS was very bad, I had numbness, odd pains, sharp prickly feelings, and a restless feeling, in my arms, especially at night. I don't anymore. I don't remember having any kind of cramping in my arms--but in my feet and legs frequently (and still at times, now). The cramping does sound like it could be potassium or other deficiency. I'm glad you are getting the MRI to rule out other things. Regarding the feeling of blood draining--I get that feeling in different parts of my body pretty frequently still--arms, upper body in particular. Katherine

I just looked at that article on dysautonomia in dogs in the midwest. http://www.cvm.missouri.edu/neurology/Dysauton/DYSAUCVT.htm That is WEIRD and it makes you wonder if the cause could be environmental--or viral. Note the last comment: "...but the increasing number of cases seen in the midwest raises the concern that an epidemic such as occurred in cats in England could be on the horizon." This form is clearly not like what most of us experience in that it is highly progressive and usually eventually fatal. Katherine

calypso I know you have been having so many disturbing problems. It is so hard when you have so many symptoms to know where to turn. I agree with you that if you haven't seen an endocrinologist that that makes sense. I hope you can find a good one. The other thought I have is to see a very good generalist who could help point you in the direction of the best specialists. I know how hard it is to find really good doctors. The other thought I have is that I have always had the best experience with D.O.'s as opposed to M.D.'s. This may just be luck/chance on my part. But, D.O.'s in my experience tend to be a bit more open-minded and systems-oriented. The only other thought I have on this is just to be cautious with alternative medicine. I think it can definitely be beneficial, but it can also be useless or even dangerous if practiced by a careless or poorly trained practitioner. It does seem like you could have more than POTS going on. It's so hard in the post partum phase to get proper diagnosis too b/c doctors like to chalk everything up to that, when they can't come up with anything else. Good luck and let us know how it goes. Katherine

I know Johns Hopkins has a section on CFS and dysautonomia. My current doctor was involved in research and treatment there until a few years ago. http://www.hopkinschildrens.org/specialtie...m?specialtyID=4 I also found this interesting article, partially authored by a Johns Hopkins researcher, while trying to find this link for you: Endogenous Circulating Sympatholytic Factor in Orthostatic Intolerance http://hyper.ahajournals.org/cgi/content/full/36/4/553 Katherine

Thanks you guys!! I'm glad Emily now has several recipes for pumpkin pie--I think I will try one of them too! Calypso--the apples sound really good--I will definitely try that. This time of year I have to admit that I love to make (And eat) cookies. My sugar-free diet goes out the window. But, I like my sweet treats to have some food value to them, which is often hard to find! I also like making fruit breads--I've also experimented with the half whole wheat flour in them. I have a hard time getting my two year old to eat new things--particulary fruits and veggies. And while I want her to enjoy some special treats, I don't want her eating much junk that is typically available over the holidays. So that's another reason I am actively seeking alternatives for us. Katherine

Mindy If these symptoms continue, it definitely sounds like you need to review all your medications --I don't know anything about any of them or had any experience with them--I think some others have had problems with COQ10--so maybe others can describe their experiences with it. When my POTS was at its worst, I had readings like that (both hr and bp) at times--I know how very scary that is. In the short run, these symptoms will not hurt you and are not life-threatening, so take comfort in that. Katherine

Hi Emily No no I didn't take it that way. I know--tone of voice with an e-mail would be helpful sometimes. But I just wanted to clarify what I was thinking! sleep tight Katherine

I was thinking something very simple and not time-intensive--like, we suggest this cost per year and here's where you send the check. I truly think that those of us who can pay (and I know many of us are in difficult financial situations, but not all of us are) and who value and regularly use the forum would do it. It would be a boost, that's all! Katherine

Any ideas for healthier (but still delicious) eating for the holidays? I thought it might be fun to swap some more recipes. This one is not necessarily quick, but has many healthful ingredients (of course not possible for those with celiac disease--sorry.) I am trying to vary my diet more--so I'd personally love to know of some good recipes that are wheat and gluten free. This is from DrWeil.com: Sesame-Almond Cookies Almost everyone loves cookies. Most store bought varieties, though, are filled with partially hydrogenated oils and other undesirable ingredients. These tasty little cookies are actually made with olive oil and a host of other wholesome additions like tofu and chopped almonds. Enjoy a cookie with a cup of hot green tea. 3/4 cup whole-wheat pastry flour 3/4 cup unbleached white flour 1 teaspoon baking powder 1/8 teaspoon salt 1/4 cup sesame seeds, toasted 3/4 cup raw almonds, coarsely chopped 4 ounces silken tofu 1/2 cup light olive oil 3/4 cup light brown sugar, packed 1 tablespoon almond extract 1. Preheat oven to 350?F. 2. In a bowl, stir together the flours, baking powder and salt. Mix in the sesame seeds and chopped almonds. 3. In another bowl, mash the tofu and combine with the olive oil, sugar and almond extract. Mix well. 4. Using a rubber spatula, fold the wet ingredients into the flour mixture. Roll the mixture into 1-inch balls, flatten between your palms, and place them on ungreased baking sheets. Bake the cookies about 10 minutes, until the edges begin to brown. Remove from the cookie sheet and cool on a rack. Makes 4 dozen Per cookie Calories: 86.1 Protein: 1.1 grams Fat: 6.4 grams Saturated Fat: 0.8 grams Monounsat Fat: 4.4 grams Polyunsat Fat: 0.8 grams Carbohydrate: 6.7 grams Fiber: 0.6 grams Cholesterol: 0.0 mg Vitamin A: 2.5 IU Vitamin E: 1.0 mg/IU Vitamin C: 0.0 mg Calcium: 11.3 mg Magnesium: 13.5 mg

Ditto! This forum is so helpful to me. I have learned so much by reading about others' experiences with symptoms and treatments. I think I learn something new each week, still--even after using the forum for a whole year! And I love having the opportunity to share my experiences with others, in the hope that their journey with POTS will be a little easier because of it. One thought I have is a suggested annual membership fee. No one would be required to pay it, but it would just be a suggested fee to cover costs of operation. Those of us with the means to pay, who are using the forum frequently, would. I would even more strongly suggest this, if you are having any difficulty covering basic costs. Many of us would like to know, if this is the case. Katherine

Julia--I am so so sorry that you experienced such toxic exposures at work. Yes, you are so right--education is so important, as is transparency of government. And we Americans need to continue to call and work for both. One complication is that this stuff is complex. Often, unless you are a specialist/scientist, it is hard to interpret studies, for example. briarrose--I so agree that we as individuals need to pay attention to ecosystem impacts. This is where education comes in too. We have some power as consumers to refuse to consume products made with toxic processes or ingredients, for example. But most people don't know where most of the products they buy come from or how they were made, or what lower-impact alternatives are available. We are also a highly consumptive and wasteful society. As far a endocrine disruptors (like perchlorate) making their way into our food chain--who knows what the impacts will be, or are. We don't know. There are studies showing animal populations (e.g. frogs) with disturbing reproductive and developmental problems in areas where water content is high in these kinds of chemical wastes, for example. Bottom line, I think--educate yourself, do what you can to keep your exposures minimized (eating low on the food chain, eating a variety of foods, etc.) , and when you have the energy and time promote more public education, studies, changes in government regs, etc. Katherine

briarrose Your post did ellicit a good response! I agree EPA exists for good reason and I understand what you are saying--what I was saying was keep in mind these data are from a preliminary study. They do not show that there is any particular level in all milk from any location (e.g., Maryland). Study states: "These data are exploratory and should not be understood to be a reflection of the distribution of perchlorate in the U.S. food supply." The few samples they tested had high levels. It's definitely a red flag. Since I live in MD especially, it is of concern to me and I will keep following the story. (Regarding drinking water levels--the justification used to set these levels are complex, but one thing they consider is that drinking water is consumed in higher amounts than many foods are.) Thanks for sharing the article with us all. Katherine

Good question, Gena! Perchlorate is actually used for a lot of different things--not just rocket fuel, but all kinds of munitions, fixers for fabrics and dyes, commercial fertilizers, and a lot of other industrial uses. The primary way it makes its way into the environment is that it gets dumped as part of the waste stream, into surface waters and in landfills, or dumps where it leaches into groundwater. DOD has many dump sites contaminated with perchlorate. It appears that not all states are affected at this point--AND again, impacts to human health unknown--except it is an endocrine disruptor. For more info check out the EPA website: http://www.epa.gov/safewater/ccl/perchlora...erchlorate.html Again, keep in mind tearose's good advice about picking battles! Katherine

tearose, I agree, and I think that's what I was trying to say as well--let's not get too worried about it and just try to take care of ourselves to the extent we have the power to. One minor point of disagreement, organic cows are not as likely to develop mad cow disease because they are not fed dead animals, which is how mad cow disease is passed from animal to animal. However, mad cow disease is one of our least worries.

I know that--but I don't know for sure that the hair loss I experienced five years prior to developing Hashimoto's was definitely related. By the time I was diagnosed I was no longer experiencing hair loss.

I heard this report on the radio yesterday. It is concerning--particularly since we live in MD and my daughter drinks organic milk from Maryland. However, I also looked at the data from this study, on the fda site: http://www.cfsan.fda.gov/~dms/clo4data.html This is just the beginning of a data collection effort, which I don't think the press release makes clear. Instead you are led to believe by the headline that something might be wrong with organic milk from Maryland, etc., just b/c they collected data on it and compared it to a few other samples. I think bottom line--yes, we are exposing ourselves and our children to endocrine disruptors and we don't know enough yet to understand the impacts this might cause, but keep eating as varied a diet as you can and don't avoid foods just b/c they are listed in this report. This study is small and more information is needed. Katherine

I also went through a period in my early 20's when I lost a lot of hair. I was positive I'd be bald by 30. The excessive hair loss stopped by my late 20's. I did eventually get diagnosed with thyroid disease at age 30, but I am not sure the two were related. Good idea to talk to your doctor about it. It is not a POTS symptom. It could be hormonal or endocrine-related, or perhaps just a "natural" hair loss phase? I have other friends who have also gone through such an episode in their 20s with no explanation. Katherine

Oh Mary, I am so sorry for what you are going through, and your dear daughter. How unbelievably hard it is to have a very ill young child. I would imagine that this stress is making your conditions flare. I hope you get some reassurance and good help from her doctors tomorrow. You are both very much in my thoughts and prayers tonight. Katherine