MomtoGiuliana

I had this same problem of urine retention after my daughter was born. It lasted for months, but eventually resolved itself. I saw a urologist who put me on an antibiotic. (At this point I had stopped breast-feeding.) I can't remember what it was now. Anyway, I took this antibiotic for MONTHS to prevent repeated infection due to the fact that my bladder wasn't emptying well. I didn't have any problems with/side effects from the antibiotic. I suppose the bladder problem may have been related to autonomic dysfunction, but I don't know.

YES!!! I had/have this exact same symptom. It was very bad about a week after my daughter was born and then off and on for about 5 or 6 months. I still get it, but not as bad as it used to be. No doctor could find an explanation for it. I have assumed it is a POTS symptom. If you find any information on causes, I'd be interested too. Katherine

There may be no magic pill, but appropriate diagnosis and treatment will do much to help you recover. I know how hard it is to go through all of this and the guilt you feel about the burden on your children and husband. This trip you are taking is so worth it. Best wishes!

I'm trained as a biologist (B.S. and M.S.). I worked as a teacher for several years; for the past six years I've worked for local govt as a land use planner/ land protection and restoration specialist. I lived and worked in Africa for 2 years, and I have sometimes wondered if I came in contact with an infectious agent that knocked my system out of whack, since that is really when the symptoms started. I've also had Lyme disease. I have 3 sisters and one of them was recently also diagnosed with POTS (she is a health care professional, btw--a physical therapist). So anyway, I also suspect a genetic connection.

Thanks everyone for responding to my question. Your experience/comments were very helpful. I saw my endo on Friday, and got a very different response to my wheat intolerance question than I got two years ago from him! My endo told me that nearly every person with celiac disease, they are now realizing, has autoimmune thyroiditis. Both could be subtle and go undiagnosed, especially the wheat intolerance. He said that not everyone with autoimmune thyroiditis has wheat intolerance, but that it should be checked, even without any obvious symptoms. So, he ordered a blood test as a first step, and we'll see. BTW (since this IS a POTS forum) he said there is no evidence of a connection between POTS and wheat intolerance. But, we all know that there is not much research out there on this kind of thing yet. Katherine

I understand! It's so sad that on top of being quite sick, we all have to battle the ignorance and misunderstandings about this illness. I am sorry you are having a difficult time with your supervisor. I think what saved me was that I had been with my employer for six years when my problems started. My supervisor and the personnel director knew me well enough to know that my problem was serious, even though it seemed unusual. Unfortunately, not all my co-workers were understanding. I just (accidentally) came across a memo from one of my co-workers to my supervisor complaining about the increase in work load when I left, and questioning the length of time that I was out on leave. It hurt me to read this b/c the tone of the memo was that he thought I was taking advantage of a mild illness to go on extended maternity leave. And this was someone I had thought to be a friend who would trust me, as well as a co-worker. I hope once they receive the documentation they will realize how serious your problem is right now. Katherine

Agree with all the posts above--each woman is unique in how she will manage with pregnancy and POTS. POTS does not affect fertility though--that's a separate issue. Personally, I, like calypso, had no trouble conceiving (at age 33). If I had known what was wrong with me, and had managed it (of course, most of the POTS drugs you really should avoid during pregnancy), my experience, including delivery would probably have gone much better. BUT, the pregnancy itself was fine and not threatened by POTS, and I did give birth to a happy, healthy 10 pound 2 oz 29 inch baby girl! Best wishes to you. And, I hope you are among the many POTS patients who feel wonderful during pregnancy! Katherine

I think Nina is correct. Also if you look at the statistics of people using the internet now, the greater majority are "white"/of European descent. So, that could also skew the results of the poll. But, it is very possible that there is a genetic link for POTS. There are some studies that show evidence of this. Unfortunately, too little is known still.

Whenever I have had holter monitors done over the years (late 20s to early 30s), my HR went down as low as 55 bpm at night. 42 does seem a bit low, but I agree the beta blocker could be influencing that. I wasn't taking a beta blocker when I had these tests. Katherine

When my POTS was at its worst I had a 24-hour cortisol test, among it seemed a hundred other tests. My cortisol level was thru the roof. I don't remember the values anymore, but I remember it was significantly higher than the normal range. I guess that any illness could cause this, though. I don't know much about it. I just remember my endocrinologist saying that doctors can't just use one cortisol test, even a 24-hour test, alone, to determine anything b/c cortisol levels do fluctuate so much and are increased dramatically by injury or illness. I am seeing him again this Friday, and I'll ask him about it again.

YES, I have postprandial tachycardia(?) too. I think it is one of the worst of my POTS symptoms. My blood pressure go UP, not down, along with the heart rate increase, after eating. It's most noticeable/worse in the AM. Drinking fluids helps, also, small meals. In the AM is when I take my beta blocker too, which also helps.

I have Hashimoto's thyroiditis and POTS

This used to happen to me too. Only at night, tho. I'd wake up and both hands would be totally asleep. I guess it's another common POTS complaint.

I used to get chest pain a lot when my POTS was more severe. It was also sternum/left side/arm/neck pain like you describe. Now I only get it once in awhile, and usually after exercise. I know how disturbing it is. I told my specialist about it. Of course they ran all the reasonable tests and determined that I have no heart problem. Definitely make sure that all explanations other than POTS are ruled out, but it could be POTS-related pain. Good luck. Katherine

I'm curious how many of you have been diagnosed with wheat intolerance, and what triggered the test. I have a suspicion that I could be, however, I have never had any bowel/GI disturbance, which my doctors tell me is a hallmark of wheat intolerance. My last GP (who was "fired" by me after being unable to diagnose POTS or send me to the correct specialist) refused to order the test for that reason and I haven't pursued it. I am seeing my endocrinologist on Friday and am thinking about asking him about it. Any thoughts on this would be appreciated! Thanks, Katherine

I had a thorough neurological work up when my POTS symptoms were at their worst. Everything came back normal. Despite that, I had tremors, involuntary jerks and motions, dimming and blurring of vision, balance problems. BTW, the only problem I am still left with a bit over a year later is slight tremors.

Ladybug I understand that it is so hard to feel such a burden. At age 34 I had to totally rely on my mother due to POTS. My daughter was born in October 2002 and my mother lived with us for six months, taking care of my newborn and of me. I went undiagnosed for months and was so ill, like you, most days I had to find the energy simply to take a shower. There were some days that were hard for my mother, but it also was a time to bring us closer together, and for her to develop a strong bond with her granddaughter, since we would never have spent so much time together otherwise. But, yes, I felt so much guilt, about the burden on my mother, husband and daughter, and I understand how you feel. I agree with what everyone has said--let your family love you and care for you as you battle this and, most likely, get to a good level of recovery. It is a long long road for many of us. Perhaps your medications need to be re-evaluated. Some POTS meds cause depression as a side-effect and that should be reviewed by your doctor b/c it could be corrected. It may be that the treatment you are on isn't working for you, and your doctor and you may need to try some other treatments. Regarding the seizures...I had seizure-like experiences too when my POTS was really bad. It was so strange, and there was never any explanation for it, even though I had a pretty thorough neurological work up. I don't have them any more. Have you read *Spontaneous Healing* by Dr. Weil? I always recommend this book, not b/c he addresses POTS, but b/c it is a book that demonstrates how capable the human body is of healing itself, and he does address the autonomic nervous system. It's such a hopeful and inspiring book, and it also provides practical background on alternative healing practices. He promotes breathing exercises--and even if you feel too weak to do much else, you can try them. They helped me, I believe. (When I was really sick, I also saw a hypnotherapist a few times who taught me breathing exercises and did biofeedback so I could learn to really relax my body--so important for the healing process.) Please keep writing whenever you want to. We're here for you! Katherine

My sister was diagnosed by Dr. Mark Jenkins in Savannah--an electrophysiologist--his # is 912-355-0070 The other EP in Savannah is Dr. Michael Chisner 912-927-3434.

Futurehope and anyone else: I would be interested in feedback on Dr. Khurhana, or any other doctor you see in the Washington, DC area. My sister who has just been diagnosed with POTS will eventually be moving from GA to the DC area and will need a POTS specialist in the DC area. Thanks in advance! Katherine

I think seeing a POTS specialist will help tremendously to clarify what is wrong with you. It certainly sounds like dysautonomia, based on your symptom description. I live in Maryland (eastern shore) and I have an excellent specialist here who sees patients all over Delmarva. I know he is taking new patients, so if you are interested at some point, I can give you more info. Futurehope and anyone else: I would be interested in feedback on Dr. Khurhana. My sister who has just been diagnosed with POTS will eventually be moving from GA to the DC area and will need a POTS specialist in the DC area.

I have POTS. If I need to give someone a super short explanation of my condition, I often say I have a cardiac condition, even though it's not really accurate, I guess. I also sometimes say I have an electrophysiological/neurological condition. Isn't it horrible when we feel we have to explain ourselves? I understand your issue with standing. I can stand still for longer periods now than I could, but I have some days better than others. I have a job where I have to stand for hearings, etc. in front of County Commissioners. I have this fear still that I will start to feel faint and really embarass myself. Do you find that standing in certain positions helps--like leaning forward and holding on to something (like the back of a chair), standing with one leg slack, leaning against a wall? These help me often to stand for longer periods, and are less conspicuous than sitting down. Katherine

Thank you everyone for your responses. It has helped to put my family's minds at ease and has included some other information and ideas that will be helpful when my sister sees her doctor. We appreciate it. Katherine

I strongly "second" Merrill's statement. I don't feel that POTS has sucked everything good out of my life indefinitely" -- not even when I was in a disabled state, although that was the hardest time in my life, so far. I think if you read through the discussions on this board, you will see that there are many POTS patients for whom this is true, if not for all of us--that we have many good things in our lives. There are definitely far worse conditions out there that people live with, unfortunately. Like I said before, thisblows, for many POTS patients, the very disabling symptoms do not last indefinitely. And also like I said, in my case, I am now back to working and exercising, and I live a normal life. I do take medication and I take extra salt and plenty of fluids, I avoid heat and other situations that can induce symptoms for me. As briarrose said, it can at times be difficult to handle symptom management, which is why having a support group like this one certainly helps. It helps sometimes just to know that others are going through the same thing you are, and UNDERSTAND. It also helps to learn of treatments and strategies others use to ammeliorate symptoms. Maintaining a positive, can-do attitude is not always easy when you don't feel just right (or you feel awful). Having a place to come to where others with your condition (or who have loved ones with this condition) support you, share experiences and build you up, like this place, is wonderful. Maintaining a positive tone, as we do on this board, is valuable for this purpose, too. thisblows, I hope you find our responses and thoughts helpful. Katherine

thisblows... This is a complex question, that as Steph says, it isn't really known what CAUSES POTS--and there are probably multiple causes. However, for many POTS patients, there are triggers that exacerbate symptoms or make them obvious. Triggers can include virus, pregnancy, allergies etc. If the trigger can be managed or removed, the person can often improve (but not always). I would say that initially I developed, or first noticed POTS symptoms in my early 20's (about 15 years ago), but they weren't terribly bothersome, didn't interfere with exercise or a normal life, and I certainly had no diagnosis. It wasn't until I became pregnant for the first time at age 33 that the symptoms became unmanageable. So, in other words, in my case, pregnancy brought on such strong POTS symptoms that I was disabled by them, however, I probably had the condition subtly for many years prior. However, on treatment, I am now, a year after being diagnosed, functional again, able to exercise, etc. Although not back totally to my pre-preg state of well-being. Katherine

What I have read in most patient literature about POTS is that for most patients, POTS symptoms eventually resolve to a "manageable level". My specialist doesn't paint such a rosey picture, but he did tell me that the MAJORITY of POTS patients he has seen, improve with treatment and time. Some stay the same or get worse. And, he said it is hard to predict, except that those for whom the condition arose spontaneously, without an obvious trigger like a virus or pregnancy, are more likely to stay the same or get worse than those who developed POTS in response to an obvious trigger. But even among those who develop it spontaneously, there are many examples of such patients recovering well--with only minor symptoms remaining. I am curious too if there is any research out there on this--I haven't seen it myself.