MomtoGiuliana

Aprilmarie Ditto to above. Expect to have more of them as your pregnancy progresses. Most pregnant women WITHOUT POTS have PACs and PVCs during pregnancy. I had a lot during my pregnancy, and I would think most pregnant POTS patients would notice more of them than non-POTS patients would. I know it is disturbing/frightening. Unless you have a long sustained run of them (lasting minutes or longer), it is absolutely nothing to worry about. Keeping well-hydrated, I found, helped to reduce the frequency. I agree that an event monitor would be helpful if only to calm any concerns you have. Katherine

Steph My doctor is here on the eastern shore of MD, but he communicates with Vanderbilt in some fashion, since he is an AD specialist. If you know someone there, I think it makes a lot of sense to talk to them about what we want to do and see if we can work through them. I think you have a great idea. Developing this list AND getting it to doctors, especially non-specialists, has to help! Doing this thru an existing avenue (e.g., Vanderbilt) will augment whatever effort and product you/we (collectively) develop. Katherine

Steph I just wanted to add that Vanderbilt University is working on this project too. I saw my POTS specialist today and he told me about it. I was describing some of my remaining symptoms and he said how so much is still not understood about autonomic dysfunction and that there isn't even an agreed-upon, exhaustive list of symptoms really available. Anyway, he told me that the Autonomic Dysfunction clinic at Vanderbilt has developed a symptom list that includes many symptoms that are only recently being "accepted" by the medical community. He said he is going to start using it to help evaluate new patients. Unfortunately he didn't have a copy of the list handy to give me. However, this is what I found on-line. http://www.mc.vanderbilt.edu/gcrc/adc/adsq...estionnaire.PDF Honestly, this doesn't look exhaustive to me, based on the symptoms I've had and also seen described on this forum. But, maybe there is some way we can work with Vanderbilt on this list and then work with them to distribute it to doctors. Katherine

I live in a different area so am not familiar with this physician, but just wanted to say that I did see a psychologist when I was diagnosed with POTS who had particular experience with NMH and chronic fatigue patients. He was very helpful, especially b/c we did biofeedback exercises that helped me learn how to relax my body and mind. With psychologists, I think it is important to find someone who fits your personality as well as someone with experience with your particular medical condition. This isn't always easy to find and may take some trial and error. Good luck. Katherine

Hi calypso It sounds like your experience with POTS is similar to mine--it was worst post partum and that's when it was finally diagnosed. I did also have bad symptoms in mid to late pregnancy. Anyway, I had both high and low blood pressure post partum and the tachycardia. Like I said, it has evened out now--blood pressure went back to consistently low normal within eight months after delivery. I am on the very lowest dose of beta blocker now and could probably discontinue it. As far as high blood pressure damaging your heart, I think, conventional medical understanding is that it has to be consistent and long-standing to cause permanent damage to your heart. Going for weeks or months only (not years) with elevated BP is not going to damage your heart. Also, what my doctor told me is that cardiac myopathy is only a concern with tachycardia regularly in the 120 BPM range, while resting. In other words, I guess our bodies can in general take a beating from POTS and keep going without suffering a secondary illness. It is hard to believe, I know. Well, hopefully you will experience what I have--a great reduction in symptoms and improved blood pressure and heart rate. I agree that when you stop breastfeeding that is going to help too. Katherine

This conversation is very interesting. Good lord, migraine, a grand mal seizure. That's frightening. More so that there was no explanation for it. Just to add my experience, when I was hospitalized with my cornucopia of symptoms over a year ago, they did a 4-hour glucose tolerance test, among other things. It was awful and I felt awful, but nothing unusual happened and they found nothing unusual with my blood sugar during the test. I had had seizure-like episodes as well as hypoglycemic-like episodes that seemed like they could be related to blood sugar levels, but this test didn't show that in my case. My endocrinologist explained to me later that many people with POTS have hypoglycemic-like episodes, and believe they are hypoglycemic, but it is actually believed that POTS patients have a lower tolerance for blood sugar changes. I am pretty sure that's what he said. So, in other words, your blood sugar goes down (not too low) but enough that the adrenalin response kicks in inappropriately, thus causing sweating, trembling, anxiety, etc. However, I would not be surprised if there are all variants of POTS and that some POTS patients do actually have problems with inappropriately low blood sugar.

Calypso, I think you're right about being cautious with the meds, but if you still have high blood pressure with the beta blocker you are on at the dose you are on, perhaps you need a different beta blocker and you could explore that with your doctor. If you can speed walk for 40 minutes 4X a week you are doing great! I wasn't up for that until my daughter was about 6 months old, due to POTS. Exercise is supposed to help regulate/reset your autonomic system, so keep it up! Weaning will help, but also as your daughter starts eating solid foods, she won't be demanding as much milk and that will also help probably. The first 4 to 6 months of breastfeeding are the most intense of course. That said, I had to give up breastfeeding, or chose to, at about 4 months, b/c the pediatrician didn't like me to be breastfeeding while taking the SSRI and the beta blocker. My cardiologist and ob/gyn said it was safe, but he said no, and I decided to do what the pediatrician recommended. I STILL get chest pain sometimes during exertion. For a long time, climbing stairs especially, did that to me. It's not as bad any more--but I agree, it is not coincidence, it is part of POTS and I am sure must have something to do with inappropriate pooling of blood. Take care, Katherine

To answer your questions, Calypso: "How long did your BP run high for? Did it go down immediately with the beta blocker or did it take awhile?" I also had pregnancy induced hypertension that started in the last four days of my pregnancy. It came on very suddenly, since at that point I was seeing my ob/gyn about twice a week. Suddenly it was 170/80 and all along had usually been no higher than 120/80. The hypertension continued for about 8 weeks post partum. My ob/gyn was unconcerned and said it would go away. It did go away--for about a month. Then it came back again. Also I had especially bad POTS symptoms from the night my daughter was born through that 8 week period. Then I seemed to get much better for a month, and then really went down hill, to the point that I was finally hospitalized for diagnosis. It took about a week to maybe two weeks of taking the beta blocker for my blood pressure to go back to a normal level. I was taking 5 mg 2x a day of pindolol. My blood pressure otherwise has always run a little on the low side, like you also describe--not quite as low as yours, but around 100-110/65-70. I don't know anything about beta blockers, but I wonder if you are on the best one for your specific condition. "And how long would you say your POTS was "full-blown" before it started to improve even a little?" About 2 months following diagnosis and starting treatment on beta blocker and ssri. "I have to think that over time we are all going to get hypertension because of the stress POTS has on the cardiovascular system." Calypso, I don't think it is the stress of POTS that causes hypertension, from what I have read. I think rather Runnergirl was on the mark when she said: "There are some variants of autonomic disturbances that are hyper beta adrenergic in nature - that is, we over respond to normal levels of adrenaline. I think this would cause both elevated HR and BP, given the effect of adrenaline on those variables." This is also how my specialist explained it to me--he said my cardiovascular system became highly sensitive to even small amounts of adrenaline, and that brings about the pounding heart and high blood pressure. ALTHOUGH, I agree with you that POTS is stressful to the mind and body. I hope this helps. Hope you start feeling better and that blood pressure goes down to normal. Once you start feeling like it, which may be awhile, exercise will help bring it down too.

I've also had the following symptoms from your list: Involuntary head nodding Blurred vision Vertigo Light-headedness Tremors Muscle cramping Bone aching Joint pain Sensation of a hot pin being inserted in your muscles Numbness/tingling of your extremities/extremities falling asleep/prickly feeling Goosebumps leave an uncomfortable sensation Off balance Confusion or brain fog Complete exhaustion or fatigue Tinnitis (ringing or muffled sound) I had TWO MRIs, and they were completely normal. Katherine

Congratulations! Please keep us posted. We're here for support should you need it. I hope your pregnancy goes very well and your symptoms improve. When are you due?

Calypso: I was diagnosed with POTS and had hypertension (160/90 was my highest reading) with my POTS. I've never been hypertensive prior to that that I know of. My specialist didn't tell me this was rare. A small dose of beta blocker and increasing fluids and oddly enough it seems, salt, brought my blood pressure back to normal quickly. My blood pressure now is regularly around 110/70, or lower. I take 5 mg of pindolol a day still, as well as 20 mg of prozac. I would sometimes also have drops in blood pressure, by the way, occuring on standing (prior to diagnosis and treatment). But, usually I was hypertensive. Hopefully it is a short-term problem for you too. Regarding the question about being evaluated for other problems, I was evaluated for everything under the sun practically--from MS to rare tumors. It all came back negative. The only thing positive was my tilt table test. Regarding your comment that POTS is rare--I think the problem may be that diagnosis is rare. My specialist claims it is very common, just most people with POTS are not diagnosed, and their symptoms are generally mild enough that they cope without continuing to pursue diagnosis. I agree it seems that most people with POTS seem to have trouble generally with LOW blood pressure, not high. My younger sister was also diagnosed with POTS and was experiencing unusually high blood pressure like I did. Morgan--I am a little confused by your statement above "i do not have syncope. so no pots." I have always been under the understanding that POTS is diagnosed based not on a drop in blood pressure, but an exaggerated increase in heart rate upon standing. I will be interested to see what other responses you get to this question about hypertension, Calypso.

Hi Everyone I had offered in a different topic line to create a website photo album of DINET forum participants. A couple of you responded to this already. If you want to be included just e-mail me a jpg image (if possible) or two of you, your pet, child, etc. and tell me what caption you want. I'll upload the photos and post the web link! My e-mail address is oct02mom@yahoo.com I can also digitize snapshots, if you want to mail them to me. Contact me by e-mail! Katherine

The avatar is a great idea--I tried to figure out how to use it and wasn't successful myself. I have another suggestion--if this is ok with the forum managers--if anyone who wants to sends a photo or two to me at my e-mail address (with caption), I'll assemble them and put them up on the photoaccess website I use and then send a link for everyone. I can keep that link indefinintely, so can change or add to it from time to time. My e-mail address is oct02mom@yahoo.com. It needs to be in jpg format. Katherine

Very sweet pictures--Ethan is so expressive. Thanks for sharing. I like your idea of sharing our personal photos/websites, for people who feel comfortable doing that. It's nice to put a face to a name--and it's enjoyable to see other's children/pets/significant others/etc. Your studio photos are really nice, by the way. We haven't done that yet. Here are some snapshots of Giuliana--and a few others from my recent life... http://www.photoaccess.com/share/guest.jsp...8ED32974A&cb=PA

Morgan I know how hard it is to lose a pet and companion like a dog or a cat. It is so painful, just like losing any family member. I know whenever I felt sick, especially, I realized what wonderful companions my dogs were or are. Take the time to grieve. Keep in mind there are (sadly) lots of pets out there in need of loving homes like yours. Eventually you'll be ready to bring a new one into your life, but I know, it takes awhile before you are. Katherine

I started this in response to the Good Morning Everyone topic line--on diet, but it was getting a bit off topic, so I moved it to a new topic! It's interesting how many of us are or were very thin--as well as taller than average! Maybe another poll ?! Perhaps I beat you all--in my early 20's I was 123 lbs and almost 5'11"--I know, frightening. I didn't feel unwell though I did have some very minor POTS symptoms. People sometimes thought I was ill and/or anorexic and I certainly hated being that thin. (I love how many people have no problem making comments like "you are too thin!"--but would never say to an obese person "you are too fat!") I was always trying new schemes to put on weight, nothing of which worked! Now at age 35 I weigh in at around 150--much better. But, I have noticed no clear connection between weight and POTS symptoms, in my case.

I suspect that many people in general would feel better if they cut out simple sugars and all processed foods. These are recent foods in the human diet, and our bodies have thus not evolved to process them well! I know I can feel great when I increase my intake of raw fresh fruits and veggies, but I don't necessarily notice any difference when I increase protein (Merrill--I am a vegetarian, btw--although I do occasionally eat meat. Jessica--I agree about organics! I eat organic as much as possible, and I feed my toddler almost all organic food. Expensive, but it tastes so much better and seems more wholesome, especially for a growing and small body). I agree that a high protein diet might not be suitable for someone trying to maintain or put on weight. Also, there are questions in the medical community about the long-term effects of sustained high protein diets (it's hard on the kidneys for example.) I also agree that every body is different. A diet that is great/healthy for one person may not be for another. I think the medical community is just beginning to understand this. BTW, I asked my doctor to test me for wheat intolerance and he agreed. It came back negative, which is great, but I'm glad I had the test just to make sure.

Congratulations on finally having a diagnosis. That will help immensely in managing your symptoms. I agree with the above posts! Please don't condemn yourself, although I know that is so much easier said than done when you are feeling poorly. Have you read Spontaneous Healing by Dr. Andrew Weil? It is a helpful and hopeful book on general self-healing. The body and brain are amazing, as his book demonstrates, at over-coming enormous challenges. I have turned to that book several times and found it helpful and comforting. Also, I like Pema Chodren--When Things Fall Apart--Heart Advice for Difficult Times. This is more of a spiritual support, but keep in mind how strong our minds are at convincing us of all kinds of things, some of which do have ramefications on our physical health. Best wishes--and I certainly hope the good days far outnumber the bad for you.

It is very unlikely that this is all in your mind. My post partum period was ****, pure and simple. When did you deliver? The body has a lot of changes to make and if you are suffering from POTS it is much harder. Weakness and weight loss are common with POTS. I had a lot of weakness for months after my daughter was born. Autoimmune diseases can crop up following pregnancy, so I think the advice to see an endocrinologist makes a lot of sense. Do you have family or friends nearby to help with the baby so that you can have extra time to rest? Try to keep the fluids and salt going--even more so if you are breastfeeding.

I know, when we aren't well it is natural to have concern about anything that seems out of the ordinary. Yes, I have always had large pupils--and sometimes I feel that my pupils are slow to adjust to changes in light. I don't know if this is related to POTS/autonomic dysfunction or not--perhaps it is. Try not to worry about it. Do you see an eye doctor? Your eye doctor can probably respond to your concerns, but it's likely a benign state. Women used to use belladonna to make their pupils enlarge, as large pupils were coveted and considered a sign of beauty. So, perhaps see it as a beauty mark? Again, try not to worry about it too much. At the same time, ask your doctor, if you are concerned, and especially if you are noticing any vision changes.

I am guessing "on my mother's side". My mother's mother had a "difficult" pregnancy--very similar to mine, but of course, never diagnosed (this was in 1938!). She was advised not to have any more children for that reason, and my mother was an only child. My grandmother nearly died during childbirth, just as I nearly did, were it not for modern medicine. She also had problems throughout her life with fainting spells. Overall, though, she was a healthy person with an active life and lived to be 80 (died of Alzheimer's). One of my sisters has been diagnosed with POTS now. My mother has never had any sign of POTS, except that she does have a tendency to low blood pressure (not the the point of having fainting problems.)

Even on a low dose of beta blocker, my heart rate can soar, particularly when I am fighting an infection or stressed in some way. Even not sleeping well.

I agree with all the above posts. Keep in mind, this board is mostly used by people who are dealing with significant POTS symptoms. People who have gotten well don't generally hang around, so wouldn't be responding to your poll. It IS hard to cope with a chronic illness. I saw a psychologist/hypnotherapist for awhile when I was quite sick (my insurance even paid for it.). It helped me. It took me 11 months to get well enough to go back to work. I am now still on small doses of medication, but I can do most things I used to do. I have a Master's degree and work part-time and care for my toddler daughter. If I wanted to go back to school now, I would. Yes, I probably need more rest than the average woman my age, but, I wouldn't let that stop me from moving forward with my life. (And there are some other things--I don't plan to have any more children biologically, since pregnancy is what set my POTS off the first time.) So, I have made some life adjustments, but my life is very far from over due to POTS. I am more determined than ever, with everything I do. Law school is very demanding--I know, my sister just finished and passed the bar here in MD. But, most likely you will be able to do it. Statistically, most people with POTS get much better, to back to normal. Also, there are treatments that work for many people now. I hope you really don't feel you have wasted your time, working so hard in school. You haven't. And the fact that you are as active as you are suggests to me that you are doing pretty well, even though you are experiencing symptoms that affect your normal functioning right now. Keep writing to the board. We're here to understand, and support you as best we can. And congrats on the early acceptance to Northwestern. Great school.

I so agree with the above posts. Being young, ill and a mother all at once would be terrifically hard. These are two major life adjustments. And, Jessica, you manage it beautifully. It's a testament to your strength and maturity level. I also agree that having family nearby who can help out regularly is an important thing for us POTS-Moms to consider particularly when planning an addition to the family. You just don't know how you will respond to another pregnancy and post partum period and/or the added stress of another family member--who, as migraine points out from her experience--might not be as easy as the first or the others, or as easy as we expect.

Migraine I agree. I didn't have the readiness to be a parent at the age of 20, certainly. Not even at 25! We are all different and everyone matures at different rates. There are certainly advantages to being an older parent, for both the child and the parent! I also agree that sometimes things don't work out how we planned or expected, but still are for the best! Katherine