MomtoGiuliana

This is so interesting b/c I am kind of the opposite. I am very sensitive to higher estrogen levels. I tried BCPs one time, prior to POTS diagnosis, and could not tolerate them--I developed uncomfortable POTS symptoms (although at the time I didn't know that was what was going on, nor did my doctor of course). I feel worst at peak estrogen times in my cycle. Although I also have fairly heavy periods and sometimes feel bad the first day when it is heavy and I guess affects blood volume? I also had a very hard pregnancy--I guess due to the effect of hormones for me. Katherine

Has your daughter tried any other medications besides Florinef? The saline treatment is beneficial for many POTS patients. I know that when I was very sick with POTS, everytime I got an IV I felt tons better--and I experienced what Nicole did also--a drop in both blood pressure and heart rate. I am sorry she has had such a difficult time, with so many bad relapses. I hope we can collectively help in some way to make things easier and improve. Take care, Katherine

You are in my thoughts and have my best wishes for a great recovery. Please take care. Katherine

I've never had that picked up on an event recorder, but I have described symptoms to my electrophysiologist and he thinks I have them every so often. He said that many women, POTS or not, get these and they are benign, unless very sustained, in which case you might need a pacemaker or some other treatment.

JLB--Honestly, I don't think anything really helps me when I get a flare-up of these, except to wait them out. It can go on from a day to weeks for me. Overall, exercise DOES help me with POTS symptoms though. Merrill/calypso--there is still so much to understand about this condition--you're right--we are the guinea pigs--potentially. Let's hope some things can be learned in our generation that are helpful to the next.

I just wanted to add that I think Emily made some very good, commonsense points to keep in mind when going to an alternative physician. I had a similar experience to hers--not quite as extreme--but definitely be suspicious if such a physician: 1. Claims they can definitely get you well. We all know here in our collective wisdom that there are no magic bullets, yet, for this condition. 2. Insists that a supplement will not have side-effects. (Emily, I was also offered that adrenal supplement--while I was pregnant. After talking to my endocrinologist, I also determined it might not be safe, let alone useful.) 3. Claims there are tests that will diagnose your condition or identify deficiencies that have no basis in science. Katherine

corina You are welcome! I hope that on-line dutch/english medical dictionary is helpful. I can imagine that must feel very lonely to be told that you are one of the few people in your country with this disorder. From my experience and reading, I find that difficult to believe--I think the problem is very underdiagnosed still, and that may be why you are still so "alone". In any case, I am glad you found this forum. I wish I knew enough Dutch to communicate with you anywhere nearly as well as you are able to communicate with us! Katherine

Unbelievable--these doctors--your doctor! His offhand comments about exercise and depression make me so incredibly angry. I don't know what his point was regarding dmv and tachycardia--THAT sounds crazy. Doctors are supposedly devoted to making us feel better. I am so sorry that you were treated in such a patriarchal, non-empathetic fashion. Does this doctor know anything about POTS particularly? Is he a specialist? I don't know anything about florinef--except I think some other folks on this board have had depression problems that may have been associated with it. Can you get a second opinion from another doctor? If you can exercise, as hard and awful as it is, you should really try to, as becoming more conditioned will help with time to improve your symptoms. (as long as your doctor says it is ok to.) Although, climbing up a hill in hot, humid weather is not fun at all, and if it triggers symptoms that make you unable to function well afterwards, then you probably should look into getting a special parking permit for awhile. Hope you have a better day today.

You're talking about a number of different things here and I can try to sort them out based on my experience and what I have been told by my physicians (electrophysiologist and endocrinologist). Also, what I have read about POTS. Regarding cortisol levels, unless you have Addison's Disease or Cushings syndrome, it is very difficult to diagnose problems with cortisol levels because it is still so poorly understood. Cortisol levels vary from day to day even moment to moment in response to various things, so one or two measurements or even many measurements, are often not useful in diagnosing anything, or in determining whether you need supplemental cortisol. I also had some cortisol levels measured and it was found to be "high"--but apparently doctors don't know what to do with this information if anything. It appears that POTS patients have overly responsive adrenals (actually an overly responsive sympathetic nervous system) and this could be why we often have "high" readings of cortisol. Regarding hypoglycemia--have you been diagnosed with hypoglycemia or are you saying you exhibit the symptoms of hypoglycemia? I also thought I had hypoglycemia, until I was tested--several times--with several glucose tolerance tests. My sugar never went below normal. Yet, I would have episodes, after not eating for awhile, where I would sweat, feel anxious, get a very rapid heartrate, get shaky, feel spaced out. My doctors told me that this is a common POTS symptom. Apparently it has to do with, again, over-responsive nervous system that kicks in the adrenal response: slight changes in blood sugar occur and the body over-responds. Now that is not to say that you do not have hypoglycemia--you may--and if it hasn't been confirmed, you may want to consider getting tested for it. DHEA is another one of these things about which modern medicine understands little--as far as what is a normal level--according to my endocrinologist. So, in summary, the one test I think you might want to have, if you haven't, is a test for hypoglycemia. If you have had a positive tilt table test, you probably have POTS, which would account for the symptoms you describe. Hopefully, as is the case for most of us, you will improve with time.

corina I applaud you for not only working so hard to understand your condition and improve it but to do so in another language. Electrolytes are minerals in your blood and other body fluids that carry an electric charge. It is important for the balance of electrolytes in your body to be maintained, because they affect the amount of water in your body, blood pH, muscle action, and other important processes. Even small imbalances of electrolytes can cause symptoms or problems. Potassium is one of these important minerals, as are sodium, calcium, chlorine, magnesium, and bicarbonate. Can you get to this link on the web? http://www.ziekenhuis.nl/index.php?cat=woordenboek Here is the definition of electrolyte in Dutch: chemische verbinding die in waterige oplossing in ionen wordt gesplitst By the way, I am a little bit familiar with Dutch since I lived in Botswana (near South Africa) for two years and learned many Afrikaans words. nausea is misselijkheid, by the way! Katherine

I've had very slightly low potassium most of the time I've had blood tests, going back to 1998! Doctors always scratched their heads, or suspected bulimia, even when I denied vomiting. But, like calypso's experience, they generally never expressed significant concern about it. I do find I feel best when I eat a lot of fresh fruits and vegetables and I am sure this is b/c they are particularly potassium rich. This may be wrong, but I THINK it has to do with the way blood pools in our POTS-affected bodies? B/c blood pools abnormally below the heart, the kidneys "mistakenly" excrete more electrolytes than they should--in other words, your kidneys wrongly "interpret" that you have too high a level of fluid and electrolytes, which leads to mild to significant dehydration and loss of electrolytes. I believe I read that explanation in a document produced out of Johns Hopkins.

Jessica Try not to worry too much about the speech issue because children vary so much in their rate of development. I agree that day care will help a lot with verbal development. I truly believe that Giuliana would not be as precocious as she is with verbal expression if it weren't for the fact that 3 days a week she is immersed in a bevy of talkative, older little girls at her day care. She picks up so much from them--as much or more than she learns about speech from me. Also, girls are known to develop speech faster than boys. I have several friends with boys the same age as Giuliana and Ethan who are at the same level Ethan is at. As far as the separation anxiety--I am not surprised! Even though they adjust quickly to a new, caring and stimulating environment, your child is still attached to you, and will not always part willingly. Giuliana has had episodes where she will revert to being clingy to me. Overall, I am sure he is very happy there and expanding his mind as well with these new life experiences! Katherine

I know, Amy, it is hard to believe that nothing is terribly wrong. (And, who knows why they flare up? I have the same question as I can see no pattern or trigger in my case either.) But, if you have had a pretty complete work up , the liklihood that you have heart disease is very very low. The symptoms you describe, the swelling, shortness of breath and the PVCs/PACs are all common POTS symptoms. So, it's not that you have nothing actually wrong, it's just that you have nothing life-threatening and nothing that is expected to lead to heart disease. As Merrill stated in a previous post, the heart is generally (unless malformed) a strong and flexible muscle, able to withstand more than we realize. One question I do have, in general, though, is--what happens when a POTS patient DOES develop heart disease? Certainly some of us will develop heart disease one day--not b/c of POTS but due to other factors, including just aging/genetic factors/etc. Will these problems such as sinus tach, PVCs, etc then be dangerous and contribute to worsening the condition? Anyway, this is a concern I do hold in the back of my mind, even though the women in my family have been free of heart problems and have died of other conditions associated with aging. I know I probably should just not worry about it right now, but I am really wondering how POTS impacts women with heart disease. Katherine

I get these, and periodically I get them very frequently like you describe. They are forceful and frightening and I feel like my breath is knocked out of me too when they happen--I understand how scary it is. The last bout I had with them lasted for a couple of weeks and then disipated. I have also not found anything to really help when I get (for lack of a better term) a flare up of PVCs/PACs. They are most likely totally benign and also will probably go away eventually, at least for awhile. Have you had a halter monitor on when you were having these? That should set your mind at ease. Take care, Katherine

Hi and welcome! So sorry you have been through so much. If you are like most of us, it is going to take your body awhile to heal, but most likely you are going to improve greatly--especially if you can get the underlying problem of adrenal insufficiency under control. Are you on other meds besides occasional xanax? Low dose beta blockers help many cases of POTS as does a low dose SSRI--but each person is unique and you may have to go through a trial and error period with medications. Are you seeing a physician who specialises in dysautonomia?

Congratulations and thanks for the update. Sounds like you are doing very well. Glad you went into pregnancy WITH a diagnosis (instead of without), as that should help keep any serious problems at bay. Best wishes. Girls are wonderful!

Jessica I feel for you--that first day of day care was so very hard for me too--like it is for all parents. It is hard to let go. But, it will get easier for you both, and he will adjust and thrive with it, I am sure. I think part-time day care like you are doing is ideal. Ethan still gets most of his time with you, but he also gets time with other children and caregivers--learning to communicate and cooperate with others is very important, I think, to start developing at this age. It's also good for you to have some time for yourself and adult things to do besides childcare. Let us know how it went! Katherine

Yes, I have found yoga very beneficial for the past seven years or so--prior to and after severe illness with POTS/diagnosis. I agree with the above posts about starting out in a beginner class and sticking with it until you are very comfortable before moving on to anything more challenging. The breathing, the stretches, floor work, etc I think have helped in some ways to improve symptoms and my endurance. I have tried inverted poses and generally, for me, they do not bring on bad symptoms now. But, each person is unique. It also makes sense to let your instructor know of your posible limitations due to POTS. Enjoy.

beala I wish there were easy answers. I so understand your anxiety and frustration. The doctor is probably the best person to answer your question about how long to hold out with a trial course on an SSRI. Like I said, for me it was 2 months of feeling even more terrible, including the brain fog, and then a LONG road to recovery from there--months. The SSRI may or may not be the answer in your son's case. Perhaps your son will need to take some time off and graduate a year late. Unfortunately, POTS tends to put lives on hold at least for some time. Many of us have been or are in that situation. It isn't easy for the patient or his or her caregivers. Take care, Katherine

What kind of cardiologist are you seeing? If this doctor is not an electrophysiologist then, per my experience, you could be wasting your time. I have seen several cardiologists over the years none of whom even seemed to have the slightest notion of POTS/autonomic dysfunction. My current specialist, though, is an electrophysiologist and he is great. Have you had a tilt table test? There are still things you can do to improve your symptoms, even if you refuse to try new medications, but most doctors are going to highly recommend medications. And, not without good reason--meds do help most people to become more functional/improve/recover. Good luck, Katherine

Yes, I also experience this at times. Even last night I was lying in bed about to go to sleep and suddenly I felt a bit like I couldn't get enough breath. It was subtle, but disturbing enough to wake me up completely. I also have those awful PVCs that seem to knock the air out of me when they occur. Good to check with your cardiologist on any new symptom. I have started giving a new or renewed symptom 2 to 3 days to see if it gets worse or goes away--so far, in my case, these days these events occur in clusters, and then dissipate. Katherine

Agree with all of the above posts. You must do this under the guidance of your doctor. Also, regarding feeling crummy on an SSRI, my experience is that it takes 6 to 8 weeks to realize any positive benefits of one. I felt *worse* on the SSRI for that long and then slowly started to get better. I wanted to stop it several times, but my doctor encouraged me to see it through to 2 months and then I was glad I did. Katherine

Jessica What an awful story. I am so sorry you had to go through this. It certainly sounds like an allergic reaction. I have never heard of family members being treated that way in a hospital (not being permitted to be with the patient). I've never seen an allergic reaction to an antibiotic, but my sister, who may also have POTS, is highly sensitive to antibiotics. She had an event that seemed like a reaction about two years ago that sent her to the emergency room--sudden low blood pressure/fainting/weakness (I guess essentially sudden onset and severe POTS symptoms). Of course they told her nothing was wrong, but they also determined that she didn't have an infection and could stop the antibiotics that her gp had prescribed. I think what I have learned too is that there are a few things modern medicine does very well, but there is much it cannot handle well--like unusual circumstances like what happened to David. There are, it seems, a rigid set of formulas or models that are used to define illness, and if you don't fit into those like a puzzle piece, modern medicine is of limited help to either diagnose or effectively treat. Hope David is feeling better. I wonder why they gave him that particular antibiotic--never heard of it either. Katherine

Yes, I have experienced these things at times. At these times I have even checked my blood pressure occasionally, only to find that it was absolutely normal or on the low side (although I have also experienced high blood pressure with this condition). Over time my condition has, overall, improved. Although I do still have relapses. Katherine

Jessica I am so sorry that you are still having trouble getting coverage. If it weren't for the fact that I work part-time for govt I would probably be in the same boat. Sounds like a good plan you have--glad you found a recommended cardiologist there. Hope Tampa is weathering Ivan ok. Take care Katherine