Merrill

April, this is what Dr. Low at Mayo has to say about pregnancy and POTS: "The effect of pregnancy on POTS and on patients with OH [orthostatic hypotension] are two different questions. We have limited information on POTS and pregnancy. These patients being typically female and being fertile can become pregnant. Our patients have managed very well during their pregnancy and the delivery. They typically do very well during their pregnancy, feeling better than when they were not pregnant, especially during the first and second trimesters. They should not be on any medications during their pregnancy. The advice I give is as follows. They need to feel sufficiently well that they can manage without any medications. They need to be on a high salt, high fluid regimen. Their pregnancy should go well but should be managed as a high risk pregnancy by their obstetrician. During their delivery, their physicians need to ensure that they are volume expanded and like other high risk deliveries, they should not have to undergo prolonged labor. Finally, I tell them that they should be aware that they may feel worse in the puerperium (after their delivery) when their symptoms may return. Dr Phillip A. Low , M.D. This quote comes from the NDRF web site; check out that site for even more information about pots and other dysautonomias. Can you function without the florinef and the other medications you're currently taking? I wouldn't get pregnant while taking these drugs; many doctors have told me that they're not approved for use during pregnancy. I wouldn't put myself or my baby at risk that way. (Cardiologists even recommend being off beta blockers, especially during the first trimester while baby's organs are forming. Best to stay off all drugs through entire pregnancy, tho some beta blockers are considered ok during 2nd and 3rd trimesters. I don't think you said you were taking that though...) I think you said you were young ... tho now I can't remember exactly how old you are. If you can, consider waiting a bit until you're less symptomatic and can get along without medications. (Wear those compression hose! Drink that water! Eat salt!) Also, everything I've heard from all kinds of physicians who know about POTS say that it doesn't affect one's ability to become pregnant. Good luck, and be well, merrill

Oh, yes, everyone! Stab away! Calypso, I wish I could help you here ... I don't know anything about beta blockers and the side effects that sometimes can accompany them. Other people who have experience with this class of medications can share their experience. (I've never taken one...) And I imagine each beta blocker can be different from the next. Like I had said, I only recently came to understand that saliva and tears production were either in part or totally (?) controlled by the autonomic nervous system... and that dysautonomia can contribute to dry mouth and eye. I don't know what medications do... I only wanted to remind people about the importance of oral hygiene, especially for those people who suffer from dry mouth. Before changing your beta blocker dose, I'd definitely talk to your prescribing physician. Your dry mouth may be due to the cyclical nature of your POTS symptoms, or it may be a side effect of the medication. Either way, you need more information! Wish I could be more help! Take care, Merrill

Listen, thisblows, I wish you would STOP saying things like "[POTS is ] a disease that ***** every thing good in your life away from you indefinitly..." and other such dramatic statements. I don't know where you're getting your information--certainly not from the posts on this discussion forum! Time to get a clue from the people who live with their symptoms and lead full and happy lives--who sustain successful relationships, parent their children, work their jobs, and contribute to their communities--and who still take time from their busy days to answer the questions of newcomers and lend support to those who had a difficult day.

Hi Dabs -- I'm extremely tired right now -- but I can never go to sleep these days without visiting my friends on the board and seeing what--and who--is new! A couple thoughts came to mind as I read your post (and never ever worry about saying too much or being too wordy or whatever... Your story is part of you, and we all have a story to share.) The word syndrome, the "s" in POTS, simply means a collection of symptoms. And as you've seen by now, we all suffer different symptoms at different times... though some things seem to be pretty universal (esp. the tachycardia--the "t" in pots!) You know a lot about "your particular syndrome" -- you articulated your symptoms quite well!' An electrophysiologist is the right kind of doctor to see, but not the only kind who can order a tilt table test and interpret the results. I've been seen by cardiologists (one of whom had a particular interest in the autonomic nervous system), and I too went through the battery of cardiac tests you described--as well as the autonomic nervous system tests. There are several, but generally, the tilt table is the one considered diagnostic for pots. Ask for this test when you see your cardiologist on the 19th. Actually, I had one other test that it doesn't sound like you had: 24 hour urine collection, which they test for AMA and vanillymandelic acid (if I'm remembering right). Basically, they look to rule out extremely rare tumor on the adrenal gland, which can cause output of excessive adrenalin and increased HR. You could also ask your cario about that one ... but it's pretty uncommon (I don't want to scare you--it's just that it's good to get some things ruled out!) There are definitely measures you can take to help yourself feel better... and they've been mentioned often on other posts. I'm sure you've seen them by now -- start drinking 2 - 2.5 liters of water/fluid a day, increase salt, and wear compresion thigh highs or pantyhose (the kind you get at medical supply store). Get a prescription from your doc so insurance will cover. Good luck to you; I hope you feel better soon. m

I can't say exactly why I'm writing this at the end of this post chain... but something sprang to mind as a bit of advice about how to just make do ... I've only recently discovered Peapod (grocery delivery service) -- It's fantastic... and what a relief not to have to walk the aisles, stand in line, and carry heavy groceries inside! Check it out, peapod.com, to see if they operate in your area. Also, Mightymouse, are you a high school English teacher? Just a guess... and I've been curious. m

Danelle, I just saw another cardiologist (who specializes in pregnancy--even tho I'm not preggers yet). I told her I was wearing 20-30 knee socks and she told me to wear thigh highs or more preferably, to the waist. She was pretty emphatic about it... (She doesn't like the tightness of the knee socks just below the knee and mentioned the concern you did in your earlier post: blood clots! Shoot! Anyway, I have one pair of thigh highs and they're nice--but gotta go buy more and some to the waist. I think she thought 30-40 was better, but hey, if I'm getting results with 20-30 and I'm willing and able to wear em, I'll keep going that route for now. So good luck with your 20-30s, and try the thigh high ones! (She also wanted me to start doing a little more walking with em on...) As for the anxiety, remember that an exaggerated response that sets off adrenaline rush is part of this set of symptoms we must deal with ... it's the pots, and if medication helps with that piece, then so be it! Be well, m

Thanks for your kindness, JG... I'm beginning to think that the reason we ARE so good at managing the crises of others is because we have become so accustomed to managing our own. I'm a little confused by your last line ... Do you mean that if we adopt 7 or more months down the line when I'm 43 (husband will be 44), we're less likely to be able to adopt an infant? take care, m PS Just found out I'll be on pill in April; next try in May.

Just a quick follow-up b/c I saw the new cardiologist today ... I really liked her a lot, especially when she answered a convincing "yes" when I asked my first question: whether she knew what POTS was and whether she had worked with pregnant pots people before. Not many, of course, but enough that she understood my concerns, was thorough in her interview, and considerate in her advice. She looked at my previous test results and said that I would not have been in danger of cardiac failure--even after being overstimulated with the drugs--because my heart is healthy. (Someone with an underlying cardiac condition could have had problems with the amount of retained fluid as a result of the medication. But not me! Phew!) She wants me to switch from compression knee socks to the pantyhose to the waist! (Move over tearose, I'm joining you...) I can't stand anything tight around my waist... ugh... but she insisted on it, or said the thigh highs would be OK if I really couldn't do it. She also wants to see me start some conditioning training... doing a little walking with the pantyhose on. Never do it without them, she said. She also emphasized the 2.5 litres of water a day and salt. All in the name of lowering my heart rate. And I found out it's true that hr should never exceed 160 in pregnancy--and that bedrest could end up being part of my future. We'll see; and I'll see her again if I ever make it to the end of first trimester. So that's the scoop. Take care, you guys. m

Hi Tearose -- sorry to be (what feels like) a long time responding to your post. I know what you mean when you say you feel fragile...it's a scary place to be...like if someone even gives you a sidelong glance you could fall into a million little pieces. The world can just be too much with us sometimes! The irony is, of course, that your post shows that there is a remarkable and deep inner strength within you--a kind of self knowledge that is special and rare. I hope that you're able to take the time you need right now to sort things through--and that perhaps this time of quiet will do mind, body, and soul an entire world of good. Keep breathing, keep saying kind and gentle words of comfort to yourself, and lean on your potsy friends here any time at all. Best wishes to you, m

ooh ooh, more good resources! Yay! I'm having trouble loading the Weil article tonight, but I think I know another way to go after it (through the home page). I'll definitely take a look. (A friend at work is on the Weil email list and gets articles and recipes that she often forwards to me; so many, I'm learning, are Weil devotees... I'll probably soon be one too.) So I have a funny (?) story I forgot to share last night about my conversation with my IVF doc (who had only heard of POTS but knew little until I sent him the article my cardiologist sent me and I told him what I could). Apparently at 42 I had an extremely rare reaction to the stimulation meds, producing 19 eggs, 15 of which were worth their salt and fertilized. (I never told y'all what kind of intense pain followed... couldn't stand up straight or work for a couple days.) When I reminded him about the POTS and that I've been a bit more symptomatic lately, he spoke of a patient with thyroid problems whose hr was 90-95. I started to laugh--That's nuthin', I said, I'm doing 150-155 just walking down the hall! Long pause. He then told me he was glad I didn't have heart failure. Excuuuuussseee me? I didn't completely follow everything he then explained; my brain stalled with the words "heart failure." We agreed that even though our attempt was not successful, I should keep tomorrow's appointment with a cardiologist who specializes in pregnancy (pregnant cardiac patients, I guess). I made the appointment back when I was sure we couldn't fail! Anyway, I'll find out how dangerous it is for me to pursue all this... and I'm praying she knows something about pots! I'll let you know if I learn anything interesting. Who knows? There may be others out there in a similar situation who will come searching the forum for stories from people like me. Take care, everyone. m

Just a very quick reply -- As I understand it, it's not that heart rate necessarily goes down at night for pots people; it's that hr DOESN"T go down if you have IST. My doctors looked at my holter to see whether there were changes in my heartrate as a way to rule out IST, not as a way to confirm the pots diagnosis. I hope that makes sense! m

Hi -- TS-- you asked me a question, so let me first answer that. Yes, the information I wrote came straight from the mouth of my cardiologists at Northwestern. I'm quite sure I'm remembering correctly, because I was concerned about being misdiagnosed with POTS when really I had IST! But no, my holter showed a drop in heart rate overnight, with a low of 67 bpm. And the p-waves, whatever they are, were all normal. A word about the tilt table ... try not to get too worked up about it; no matter your reaction, there are trained professionals who know how to care for you no matter what your reaction. My experience: I'd never felt weirder in my life as during that test. But it's not painful--just bizarre. And it's over pretty quickly. I recommend focusing your attention during it--say to yourself on inhalation "breathe in calm" and on exhalation, "breathe out fear" -- or use whatever words you like. Dont think about your hr or bp; think about your breathing and your focus words. I agree with what goldi says about POTS being more prevalent than we know... And also that the holter doesn't help diagnose pots. But goldi, the blood pressure thing adds information to the diagnosis, but it's the rise in hr that's the clincher. (Not everyone w/pots has bp issues.) I always thought a pacemaker regulated heart rhythms, and that would include setting a better and slower pace if appropriate. I'm not as sure about that as I am about the other stuff above, though.

Tearose, when I read your note in reply to another's post that you had happy news to share re: your MRI, I shouted with joy! (I know these results do not end the health challenges you face, but I'm truly hoping that you walk with a lighter heart these days. Going through that sleep study followed by MRI was very stressful...) How are your spirits? m

Hi Mindy -- those suggestions from MomtoGiuliana sound really good! I hope they work for you and that these symptoms will quickly pass. I like the idea of taking ibuprofen before you go to sleep as a preventative measure; if your stomach is sensative, take with a little food. I have little to offer otherwise--only that I started getting hot flashes in the night too (mostly a few months ago, several times a week ... then didn't get them ... then lately I've had a few more). They're not accompanied by the pain you describe--just soaking w/sweat. I thought it was perimenopausal symptoms since I'm 42 ... but maybe it is/was the Pots!? Hmmm... Good luck, and I hope you feel better soon. m PS thanks for your sweet note in reply to my post!

Thank you so much, dear friends, for your kindness and suggestions for calming and nurturing the spirit and cooling the body come warmer weather. I will print them all out and refer to them in the days ahead (and read and reread all your words of advice and compassion.) Dad made it through his first day in the nursing facility (I just can't bring myself to say "home" -- he swore he'd never go to one and made me promise years ago I'd never "put" him in one!) and he's doing fine. Don't know how long they'll let him stay... but we'll work something out. My IVF doctor, who I love, told me he was sorry it didn't work out this time, but he's not giving up on me. (He was out of town during the most intense 2 weeks of the cycle, and only just found out how productive the old ovaries turned out to be!) We're out of insurance money, tho, and may actually have one more try ahead. But we'll do it, and it will be less physically intense for me... and anything less physically intense for me right now is a very good thing indeed. Bless you all, merrill

Thisblows--a follow-up to my earlier post. First, sorry I was all business and no compassion ... I was at work and reacted first to the medical piece of what you had to say. The emotional component needs to be addressed too, I think... and I agree with what others have said... Do NOT give up on yourself or on your dreams of a successful career in whatever field you choose. You can do anything you set your mind to; I urge you to not let this physical setback take over every aspect of your being! You can be a lawyer with IST, a friend with IST, a parent with IST... you are so much more than a sum total of your heartrate! One final piece about the tests you've had and are about to have: Your cardiologists should be able to confirm what I'm about to say... As I understand it, you may have inappropriate sinus tachycardia AND experience the telltale increase of 30+ on the tilt table test (which is what typically diagnoses pots). POTS is so rare--in Chicago, anyway--my cardiologist--tops of the department at the best hospital in the city--rarely sees it! I'm the 3rd case in the last 6 years. In fact, my case was "presented" in front of 30-some doctors...and they went back into my holter report to look for details: the hr during sleep, that can help figure out pots vs. ist. Ask again about this... but as I understand ist, the hr stays high during sleep. I hope you get some relief soon; I can only imagine how disarming sudden onset of tach can be! I've always had it, so it's an old familiar friend. Best, m

Hi Danelle -- just a quick reply to your question. Even though I've had POTS forever, I only recently found out what was going on for me. My symptoms have been much worse in the last year, and I finally decided to get some answers. I could have written a few of your sentences in describing my tachycardia--sitting, it's as low as 105-110; walking down the hall at work, it's upwards of 150. I've always been heat intolerant and I've NEVER been able to exercise at all. I was always super skinny even though my diet was good. I finally gained weight a few years ago when I was less symptomatic; but then inexplicably lost 15 lbs in last year as heart raced and symptoms worsened. (I mention all this, I guess, because you spoke of your weight...) Gee, this isn't a quick reply to your question, is it? Two things I want to say, I guess. 1) I too suffer from anxiety--but now that I understand that my body's overreaction to any stress (including the fantasy of stress--that something bad will happen to one I love, a car crash, a plane going down etc) is about the POTS, I can say, Hello, tachycardia, you're just trying to scare me even more! Now cut that out! But we're all different, and I agree that an antianxiety med--starting low dose so you can see how you do--is something you should think about and talk with your husband and/or doctor about. As for the compression hose (never thought I'd get to it, didja?) -- people will be shocked to hear that I wear 20-30 compression. I know the articles say 30-40... but my prescribing doctor told me they were extremely tight and that I might not like them or wear them. We decided I would start with 20-30 and see how or whether they helped. I don't know that they help with the tach; they might, but I made other changes simultaneously (salt, water, electrolytes, etc) so I'll never know what part of the results I'm getting are sock-based. I will say, though, that I LOVE this weight, and it's working out for now. If I get up during the night without them on, I swear I can feel the blood pooling in my legs. I put them on before getting out of bed in the morning and take them off in bed before going to sleep. I'm that attached. They just make my legs feel less heavy and more energetic. And these are very good things! Maybe try the lighter compression if the 30-40s were not comfortable. (And if you didn't know, they're covered by insurance under durable goods, so get a prescription from your doc if you've got insurance.) I bought mine at a medical supply store--if you're 5'7" or taller, I recommend the Mediven brand. (Jobst were too short for me.) best of luck to you, m

Yes, this blows ... question: You say IST several times but I want to clarify both for myself and for others who might read your post. IST = inappropriate sinus tachycardia. Yes? Please correct me if you're referring to something else ... but if that's what you're intending IST to stand for, then let me share something I was told by the cardiologists (at Northwestern Memorial Hospital, Chgo) who diagnosed my POTS. One of the main distinguishing traits of POTS versus IST is that with POTS, the heart rate drops during the night when you're asleep. With Inappropriate Sinus Tach, the heart rate is elevated (typically over 100 bpm) 24 hours a day. Have you worn a 24 hour holter monitor? (You didn't say so in your post...) If no, I would call your cardiologist and insist on it. Also, I'm not sure why you think you have pots and NOT inappropriate sinus tach. Are you on any beta blockers to help with the tachycardia? Frankly, being able to stand all day is extremely unlikely if you have pots... so I'd be asking more questions to see if it's really the case. (By the way, I don't think of it as a disease--pots is a dysfunction of the autonomic nervous system that causes some icky symptoms that can be managed some of the time with different medications and tricks-of-the-trade: high salt, fluid, compression socks to name just a few.) PS I've had it for more than 30 years, I believe, since adolescence. Some years better than others. I didn't have a virus or other known precipitating cause. Just the hand I was dealt, I guess.

Hey, Nina (MM), I shouldn't have said "always" (and you know what I mean ) I'm one of those with tachycardia without deep dips to the low blood pressure zone! There are POTS people without major bp fluctuations... I think for me, the orthostatic intolerance is from an autonomic nervous system problem that keeps my veins from properly constricting in my legs. That action (or rather, inaction) leads to pooling which results in the tach to keep the blood flowing to my brain etc. I guess that's why the compression socks feel so mandatory right now! The compliment still stands, however; that was great info and a great set of URLs to pass along. peace, m

Oooh, that sounds hard! I wish I could offer some advice there about SSDI; this is a topic I too am very much interested in. (I want to make this recommendation to my brother, who is sick right now.) I'm hoping people will weigh in soon on this important issue. You might try also posting your note on the NDRF discussion forum; I think there are some on that board who have also faced this dilemma. good luck!

Shayden--I am sooooo glad you're finally going to get that stress-echo done! (Have you had one before? My experience: they hook you to a heart monitor to keep track of your heart rate, then they do a baseline ultrasound, or echocardiogram, of your heart at rest. After that, you walk on a treadmill--I was scared about that part, that I wouldn't be able to do it since my tachycardia is so bad with mild exertion, but it was OK. After they get your heart beating rapidly but still safely, they have you turn around fast and lie back down to repeat the ultrasound/echo of your heart. It's mostly painless--except my ribs are close together and I'm thin, so I did have a little soreness and bruising.) I'm sure that episode on 3/22-3/23 scared you--and your doctor's comments afterwards were alarming (and absurd, given that no one had yet taken a look at your heart muscle)! But this test will reveal a LOT--so take heart, so to speak, in that. Don't you have a follow up appointment scheduled with the cardiologist who ordered the test? That seems like a MUST--call and see if you can even get one the same day you go in for the test! The optimist in me is thinking that cardiologist couldn't offer you much in that first appointment; s/he needed to see the results of the stress-echo first. You've got a lot going on write now--dealing with POTS and what sounds like NCS if you're fainting. But you're also trying to figure out what that trip to the ER was all about on the 23rd and whether or not "damage was done" to heart. Try to take it one thing at a time, one day at a time. I have a former colleague (not a pots person) who lived in Columbus, and he had a pacemaker and undoubtedly fine cardiac care. If you want, I can contact him and find out the name of his doctor. (I wonder if you've already seen him/her?) Wishing you the best of luck and health, m

I can't thank you enough for your kind and gentle words tonight, my friends. They are so important, and they mean so much. I didn't mention in my earlier post that my brother, who lives across the country and with whom I'm very close, was recently diagnosed with MS... He is suffering, truly suffering right now. It's horrible--the meds aren't working and he's so sick and sad. It makes my own stuff seem so incidental--in the scope of the many things I have to grieve for, I actually think it tops the list. (Perhaps I protect myself from fully feeling my own experience...) I say this now, I suppose, in the hopes that people who read this and believe in the power of prayer or positive thinking or healing energy or what have you will include my brother in your thoughts tonight. MM--I think I might enjoy the Buddhist meditations you wrote about (Thic Nhat Han, right?) I have a friend I can borrow from. (You had such a brutal year...No fair!) For tonight, I'm cuddling with my parrot and watching The Daily Show (Jojo and Jon Stewart can make me laugh no matter how sad I feel.) And I think it's time to reread Judith Viorst's excellent work "Imperfect Control." (She also wrote "Necessary Losses," which I haven't read but think I now should.) Thanks again...here's hoping for better days for us all.

Mome22--I would have answered the question/s you asked me the way mm did--by pointing you toward some informative Web pages and articles that are written by experts in the field. I couln't explain NCS vs POTS any clearer than the sites mightymouse pointed you toward--in fact, I'd probably much it up and leave you even more confused! (But I wanted to post a reply, lest you think I hadn't been keeping up with you.) I hope you find the information you're looking for! Take care, merrill

I agree w/ MM (I always do ) -- It's probably nothing, but do check with your doctor (especially if you don't remember bumping into anything!) be gentle with yourself, m

Hi all ... I first introduced myself to the group with a post about impending IVF and hopes for a successful pregnancy despite the POTS ... Well the last few weeks have been intense to say the least, and today I found out our attempt was unsuccessful. Meanwhile, I can barely walk at all without feeling winded and exhausted (I was hoping it was the hormones, but noooooo, it's the pots...) and with rather intense tachycardia that's freaking me out a little. Yeah, I'm doing the gatorade and salt, and eating well and all that... but can I just say, SHOOOOT! Perhaps the stress in my life made all the difference, but I'll never know for sure. Dad fell and broke his dominant arm the day after the implantation; he's been in the hospital all week and today I'm transferring him to a nursing facility for healing... It's all been overwhelming, but I've been holding up OK nonetheless. (Husband out of town, no siblings here, I'm totally on my own.) Crazy, huh? So what am I scared about, I ask myself. That IVF will never work (we've got 10 more frozen, so 3 more attempts are possible, I guess), that my body's a rather inhospitable place right now, that the POTS is getting worse and I'm on a slippery slope, that summer's coming and I've been in denial about how hot these compression hose are going to be. I'm already grieving the loss of shorts and sandals... let alone the possibility of a family. Oh, woe is me! Sorry to sound so crappy today; hubby home tomorrow, and things will be brighter then. Yes??? Merrill