MomtoGiuliana

While you may not come across many stories of "full recovery" at this forum, and perhaps elsewhere, many people do recover to a good to excellent level of health, with minor symptoms and/or flare-ups. This is the case for me. I was very sick with POTS postpartum--to the point of being bedridden. Now I am very well most days, and work part-time and am home the rest of the time with my 2-year old. Most people improve with medications and time. Katherine

Stacey--thanks for checking back in and letting us know how your dad is doing. Glad that they identified the problem bug and that he will soon be on the mend. Katherine

Stacey Hope your dad is improving now and is comfortable. So sorry your family is going through all of this. Hope you are managing well and taking care. Katherine

Sweet idea, Persephone! 1) Name: Katherine 2) Favourite book: (this is hard!) Jane Eyre 3) Favourite film: Like Water for Chocolate 4) Things that make you happy: my 2-year old; feeling well; perfectly ripe mangoes; kayaking; yoga; the beach 5) Something about you that no one here knows...my husband and I own diesel vehicles and run them completely on soy-based biodiesel; I am ALSO left-handed, btw!

I am also interested in how you got your diagnosis of the autoimmune condition. I also wonder if mine has an autoimmune basis, since I also have Hashimoto's. I am very sorry for your losses. I have many friends who have experienced miscarriages. I know how devastating a loss it is. I don't think there is generally considered to be a link between fertility/miscarriage/premature labor and POTS. However, there does seem to be a link between some forms of POTS to preeclampsia or pregnancy-induced high blood pressure. I have POTS and have one daughter. I am fortunate not to have had any miscarriages. Following a difficult pregnancy I have chosen not to attempt further pregnancies. Katherine

You beat me to it! Happy TEAROSE Day!!! Thank you for stating so eloquently what this forum means to you. I think there are many of us who feel that way too! And you are one of the reasons why! Have a great day. Katherine

Tearose--great points about skepticism regarding research and treatments. It is hard for us lay folks to effectively analyze research, and we often have to rely on the help of the medical community--yet, politics also plays a role. Also, very interesting points regarding your specific condition and how increasing your blood volume impacts it. Ernie--salt intake bad for kidneys? Can you point to some research showing this? Or, did a doctor tell you this? This seems to be a common belief--but when I ask my doctors about it, they tell me it is not going to be damaging to my kidneys to take large amounts of salt. Thanks, Katherine

It sounds like this researcher was talking off the cuff--and very theoretically. In addition, he may not understand that hypovolemia is so debilitating. I am trying to think in what other cases the body malfunctions and the malfunction is actually believed to be protective of health. That's one question I would ask the researcher in response to his conjecture. Katherine

RG--I take 20 mg--always have. I did have bad side effects for the first 4 to 6 weeks! My POTS was worse--more ectopics, more fatigue. However, my doctor kept encouraging me to ride it out and see if after 2 months my symptoms wouldn't start improving. If I hadn't had full confidence in him, I would have stopped taking it. Anyway, sure enough, for me, I improved by 8 weeks, and then continued in a general upward swing from then on. I might have done better with a tapered up dosing, who knows? I hope you find something that will help you! Katherine

First of all, I think this is a good question for your doctor. Good that you are monitoring your hr, as that will help determine what treatments may be helpful. 200 is pushing it, so you definitely want to ease off when that happens. Did you adequately hydrate yourself before you began to exercise? For POTS patients, this is really essential. I wouldn't worry about a few episodes of such a high heart rate damaging your heart or being otherwise dangerous, but you don't want to keep doing that to yourself either! Betablockers can help with these high heart rates. Also, rather than using a treadmill (and especially walking with a GRADIENT--which IS harder on your cardiovascular system), you might try reclining or sitting exercises first. But, again, see what your doctor recommends regarding exercise. Katherine

Gayle--Drinking more regularly definitely helps me with this! Thanks, Katherine

As follow-up--National Academy of Sciences has released a report on the health effects of perchlorate. Katherine Perchlorate in water less of a threat, panel claims Rocket fuel trace level study draws dissent By Tom Pelton Sun Staff Originally published January 11, 2005 Drinking water tainted by an ingredient in rocket fuel and explosives is less dangerous than previously thought, and the chemical might not cause brain damage in babies or thyroid illnesses at trace levels, according to a report yesterday by the National Academy of Sciences. The report said that perchlorate, which has polluted municipal water supplies in Maryland, California and dozens of other states, might be safe at levels at about 20 times the amount suggested by the Environmental Protection Agency in 2002. The conclusion - if accepted by the EPA and states - could mean a savings of tens of millions of dollars in cleanup costs for defense contractors such as Bethesda-based Lockheed Martin Corp., which has been sued in California for dumping the chemical onto the ground near missile testing sites. An environmental advocacy group, the Natural Resources Defense Council, charged yesterday that the White House and Pentagon had lobbied behind the scenes to convince the scientific panel to downplay the risks of the chemical. "This report confirms our worst fears - that the White House and the Defense Department and their contractors were able to unduly influence the academy," said Jennifer Sass, a scientist at the New York-based NRDC. "It's part of a brazen campaign to downplay the dangers of perchlorate." Officials at the NRDC said that public records recently obtained through a lawsuit showed that the Department of Defense and White House discussed how the scope of the study should be limited and which scientists should sit on the panel. Some of the studies used by the NAS to reach its conclusions were funded by the defense industry or Pentagon, said the NRDC. And in the end, the 15-member panel had two scientists who had at one time performed work for the defense or perchlorate industries. A third scientist stepped down after being accused of a conflict. William Colglazier, executive officer of the National Academies of Science, denied that the private, nonprofit organization, whose members are selected by independent academics around the world, was biased or influenced by lobbying. "We were completely independent," Colglazier said. "The academy has total control over who was appointed, and there were no conflicts of interest." His organization did confirm that one of the five health studies relied on most heavily by the NAS was funded in part by the Perchlorate Study Group, a defense industry trade association that includes Lockheed Martin. Gail Rymer, Lockheed Martin spokeswoman, said it's too early to say whether the report will mean lower cleanup costs because the EPA, California and local governments are all free to set tighter limits than recommended by the NAS. The EPA will review the report and use it to create national drinking water standards. Lockheed Martin has spent $80 million removing perchlorate and other pollutants from public water supplies in California and will likely spend perhaps $180 million more, Rymer said, depending on the levels required by local governments. The rocket fuel additive-whose presence in the ecosystem is a legacy of the massive missile buildup during the Cold War - has in recent years been discovered in drinking water used by more than 11 million people in 35 states. In Maryland, public drinking wells near Aberdeen Proving Ground were temporarily shut down in recent years after testing positive for perchlorate that had seeped from the Army base's testing range. The EPA suggested in 2002 a maximum safe level of 1 part per billion of perchlorate in drinking water, and Maryland and Massachusetts adopted similar recommendations. Based on a study on rats, the EPA predicted that perchlorate could cause thyroid tumors in humans. But the NAS panel concluded that the chemical was "unlikely to lead to thyroid tumors in humans." At high enough levels, perchlorate can hurt the thyroid gland's production of hormones, the NAS said. But the panel said there isn't enough evidence to determine whether trace levels of perchlorate will cause brain damage or developmental delays in babies, as some have feared. -------------------------------------------------------------------------------- About perchlorate What is it? Perchlorate is both a naturally occurring and man-made chemical that is used as the primary ingredient of solid rocket propellant. What are the health risks? Perchlorate disrupts how the thyroid functions and might lead to tumors of that gland. Does my water contain perchlorate? Perchlorate has been found in at least 20 states throughout the United States, including in Maryland near Aberdeen Proving Ground. What does the report mean? If the EPA accepts the scientific panel's recommendations, higher amounts of perchlorate, up to 20 times greater than the current levels, will be allowed in drinking water. Source: EPA

Good question! I have asked my electrophysiologist this question. I am in the same boat you are. After being off Prozac for two months, I start to get intolerable POTS symptoms again. He says it is considered a very safe drug, and there is no evidence of toxic effects associated with long term use of SSRIs. He said some people get elevated liver enzymes after awhile, but this is not dangerous or going to cause any health problem. I am hopeful that with time, I can wean off for good! But in the meantime, thank goodness for it! I wouldn't be too concerned, but good to keep an eye on the literature out there to weigh the risks and benefits. Are you on the lowest dose possible? Keep in mind that most people with depression take it at higher levels than do POTS patients, so that hopefully reduces any possible problems associated with long term use. Katherine

Ling--so sorry for your discomfort. It sounds severe. Have you had this before? I get chest pain, but it never lasts long. Just a thought--I did once have pleurisy. This is inflammation of the lining of the lungs. It is very painful and hurts with every breath. Have you gotten over a cold recently? Pleurisy can follow a respiratory infection. I know it is so hard to know when to consult with a doctor about our symptoms. But, if you have any doubts about what might be wrong, I would contact your doctor. Hope you are feeling better. Katherine

ramakentesh--While both ecstasy and SSRIs are psychoactive, serotonergic drugs they don't really work in the same way. SSRIs are in the class of anti-depressants, whereas ecstasy is in the class of stimulants. Furthermore, I don't think they should be compared, as ecstasy is a dangerous and damaging "recreational" drug with no use in pharmacology. I am interested to know from what info or studies you formed the opinion that SSRIs are not appropriate for POTS treatment. They have been shown to help many, many people with POTS to see significant symptom improvement. It is true that they don't help everyone, and IMPORTANTLY are at this point possibly not safe or effective for teenagers or children for any purpose. I'm not trying to criticize your concerns and opinions, but, I don't want new patients, in particular, who may be taking an SSRI, concerned if they read your post, with no mediating response following it. You are right that low blood volume is probably responsible for many POTS symptoms. But, as we know, POTS is a complex condition. The low blood volume seems to be caused by autonomic dysfunction. For reasons that are not well-understood, some people with this autonomic dysfunction improve with SSRIs. There are, as we know, other ways to address the low blood volume -- increasing salts and fluids, florinef, etc. Anyway, the bottom line is that POTS treatment is definitely not a one-size-fits-all approach, and there are a variety of safe, effective drugs available that help. One of these are SSRIs. Katherine

Thanks Gayle. I know when I have had these episodes I am probably too low on fluids. When your doctor diagnosed PSVT for you, did it change any of your treatment? My doctor told me I PROBABLY am having such episodes based on my description, yet he seemed totally unconcerned, since they are so short. I can't drink gatorade--just personal preference. I make my own with dilute fruit juice and added salt. Katherine

Was thinking of Emily much of today too. I am glad it all went so very well! Katherine

April That's great you are keeping an eye on your bp at home and seeing the doctor once a week. Keep taking great care of yourself and rest as much as you need to. I can just reiterate that I was also very tired like that the last couple of weeks. All I did was lie around and read, sleep and eat. My daughter put on about a pound per week in that last month, I think. I had a healthy, happy 10 lb girl at the end of it all. Looking forward to hearing how things go. You'll do great. Take care, Katherine

First of all, it sounds like you feel a lot is riding on this test. Do you have any data you can bring the doctor tomorrow on yourself that you have collected at home? Blood pressure or heart rate readings (lying, sitting, standing)? A diary of symptoms? Those can also help doctors to make a diagnosis, even if you are stable enough the day of a tilt table test to "pass" it. However, I'm a bit confused by your post. POTS is diagnosed by a change in heart rate upon standing--not a change in bp low enough to make you pass out--although this can also happen to POTS patients. For example, I was diagnosed with POTS b/c my heart rate went from 80 bpm lying down to 160 bpm standing. My blood pressure during the test only went down a little, and certainly not enough to induce fainting. It was the change in heartrate that led to my diagnosis. Other related conditions are NMH and NCS, which do often result in fainting. You can have an overlap of all of these conditions or only one. If this doctor isn't completely familiar with dysautonomia I hope you can find another who is--or you can provide him or her with information about POTS. Take care and let us know how it goes. Katherine

I remember reading somewhere that many people with POTS suffer cognitive dysfunction due to hypovolemia. Many see improvements with increased salt and fluid intake. But the autonomic system is complex and there are probably other explanations too. I have bad brain fog at times--although overall it is so improved over how it was two years ago. I am not as organized as I used to be. By this, I mean my thinking is not as organized. At times I really struggle to think through a problem and how to solve it, e.g., at work. This gets frustrating. One thing that helps--trying NOT to multi-task. I think this is hard on the brain! Instead try to focus, to the extent possible, on a task at hand. I think like any other part of the body, the brain responds positively to exercise. So, it's important to keep trying to flex it, however you can. Katherine

RG and calypso It is amazing how different autonomic systems respond so differently to medications. I have never heard that SSRIs increase irregular heart rhythms. I don't believe this has held true for me, but not 100% sure. I have episodes where I notice many ectopic beats, but this has been both pre- and during- SSRI use. Overall, I believe I have fewer of these episodes on the SSRI than off and I definitely feel better on the low dose SSRI than off it, for now. I do hope that one day in the coming years I can wean off it, although my doctor maintains there is no significant ill effect likely associated with long-term use of one. RG--I know what you mean. Whenever my symptoms start to get any worse than a nuisance I start to panic--and worry what is REALLY wrong with me! So far for me, after my one long, bad spell, I am generally very stable and if I go off kilter, quickly return to stability. Amy--I agree that a nutrient-rich, fresh and sugar-free diet is very helpful in maintaining a sense of well-being. I hope you find your answers SOON.

Tearose/Merrill I take the betablocker still b/c it does reduce my heart rate, and makes me feel more comfortable for that reason. Also, I seem to have a bit of a higher exercise tolerance with the low dose beta blocker. When my bp was higher end of normal, it knocked it down to a good range, which I think was healthier for me. I have over time cut down my dosage from 10 mg to 5 mg. The 5 mg is usually just enough to take the "edge" off the tachycardia. I also notice fewers ectopic heartbeats. Katherine

Merrill I take 5 mg/day of pindolol. This is a betablocker that contains a beta agonist--it is different from some of the other beta blockers used by POTS patients. (The reason my doc initially put me on this was b/c I was breastfeeding and it is considered a bit safer for the baby. I stopped b/feeding upon the pediatrician's advice/concern about the SSRI and this med, but continued with pindolol anyway, rather than switch to another, b/c it seems to help.) I think the dosage varies with the type of betablocker taken. My bp was on the higher end of normal following pregnancy and for a long time afterwards, but is now inching down to lower side of normal. I think some days the beta blocker does make me more tired. The windedness that you describe--I believe that could be a side-effect of the beta-blocker. It should subside as your body adjusts. Katherine

Radha Just wanted to clarify that SSRI's are not addicting. It is true that you need to taper off slowly after you have been on one. They are considered to be a very safe drug, especially in low levels, for adults. For children and teenagers, I guess there is still question about their efficacy and safety, however. Good luck with solving your problem. Katherine

Good luck with everything, Ling. POTS does not affect fertility--at least there is no evidence of that. I got pregnant at 33 years very easily. I think there are things you CAN do to boost your and your husband's fertility that you might want to look into--mainly I'm thinking--excellent diet for both of you and keeping him out of hot tubs! There are books on this topic. Also, do you know how to check your basal body temperature? I think this is how I got pregnant so easily. Basically there is a small window of time, 2-4 days a month, during which it is possible for you to get pregnant. By charting your basal body temperature, you can usually easily predict those days. (Essentially, once you have ovulated, your basal body temp goes up very slightly.) I got a thermometer to measure this every AM when I woke. Again, there are educational materials out there on how to do this and perhaps your doctors have already given you this information. Hopefully you can manage your first 3 months of pregnancy without any meds, as Jessica said. After that, there are some meds that may be ok if you really need them. Hope you are one of these POTS patients who feels better with pregnancy anyway! Katherine