Merrill

Mary, I'm diggin' that cool music! I'm curious: did your cardiologist explain what the difference in diagnosis (POTS vs IST) would make in your treatment? This is all confusing to me because the doctor I saw is medical director of the clinical electrophysiology dept of this hospital (a major medical university hospital) ... he didn't mention this test. I wonder if he thought my holter test was more indicative of IST than the doctor who saw me last year thought it was. (I just looked back at your other post, in which you shared your holter results ... and while our highs and lows are quite similar, your 24 hour average was much higher than mine!) Or maybe it's because the treatment is still beta blockers? Or maybe "he just didn't like me?" (that's a joke -- new book out w/similar title...) You explained the procedure well ... and I too would be absolutely petrified. But I know you'd give me the confidence I'd need if I ever go through it! Definitely something to think about as I continue my research on all this! Thank you for helping me! And Ernie, thanks for asking. I am feeling significantly better on 25 mg than on 50. I can't say if it's lowering my hr for sure, but I think that it is. Even pushing some snow from one part of the sidewalk to another today didn't send me into a tailspin. I was winded and tachy, but not wrecked ... and it wasn't scary this time. So this is all good! Best to all--stay warm, m

Hi, everyone ... I just wanted to let you know that I heard from Emily's mom today -- and it looks like she's coming home (for the second time) at some point today. She's had a rough time of it, unfortunately--including an ambulance ride back to the hospital ... but she's doing better now and they're releasing her. Emily and her family are all so grateful for your support and good wishes ... keep em coming! I'm sure she'll be back online in the days to come, and she'll share her own story, drama and all! Hope everyone's staying warm and dry ... be careful if you're wielding a snow shovel! m

It sounds like you tested positive for POTS, then, but not for NMH or orthostatic hypotension. The quote below is from Chris Calder's web site; here's the URL to the whole article if you haven't seen it. http://home.att.net/%7Epotsweb/POTS.html "POTS is defined as a minimum 30 bpm acceleration of heart rate from the supine to the standing position within 10 minutes or less, with a peak heart rate reaching at least 120 bpm. Some patients have heart rates that go all the way up to 150 bpm and beyond. During tilt table testing, some POTS patients have large drops in blood pressure and pass out (syncope), while other patients have only relatively shallow drops in blood pressure. A small percentage of POTS patients have no drop in blood pressure at all. POTS is diagnosed on the basis of heart rate increase and heart waveform signature revealed by electrocardiogram, not on the basis of a drop in blood pressure, as is the case with orthostatic hypotension and neurally mediated hypotension (NMH). Neurally mediated hypotension is commonly associated with POTS, but having NMH is not a prerequisite for a diagnosis of POTS. The secondary symptoms of POTS vary significantly from case to case."

I'm far from hypermobile, so that's not an issue for me, Nina. And Tex (mind if I call you Tex? ), we have the same diagnosis except I have a big bulge at C5/C6 and a smaller bulge at C6/C7 ... and arthritis (I'm 43). I asked my PT today about the reverse curve (we were reviewing together my MRI and Xray films) and he said it comes from years of sitting like this: (I can't draw a picture here, but if I could, I'd draw a picture of my PT sitting slouched forward with chin protruding and head bent backwards... a common and [unhealthy not to mention ugly] posture people assume when sitting in front of the computer or driving... two things I do a lot of!) So the short answer to your question is yes, I was told it was postural. I think the arthritis is also brought on by posture stuff as would be the bulging disks. As for pots, I can't say. I have had tons of problems with fingers and sometimes the whole hand falling asleep--no, going completely dead-to-the-world--during the night... for about a year now--long before neck pain set in. I assumed it was pots ... and since it still happens, I still don't know the cause. I've been getting PT for a few weeks now, tho not completely out of discomfort... Everything's a chicken/egg question for me ... Pain causes some autonomic functions to work improperly anyway (bowels, for example) -- so while constipation and runs can both be influenced by pots, so can they be influenced by severe pain. (Constipation anyway.) See what I mean? Take care, m PS I hope you're getting some PT for your neck!

I would have said the same ... no chiro ... at least until you find out the source of your pain. If you can, get your doc to prescribe a cervical spine X-ray and/or MRI to find out why you're experiencing so much pain. (Even if you go the chiropractic route, the practitioner would then know what s/he is dealing with and how to target therapy!) I'm getting physical therapy now for bulging disc/arthritis/reverse curvature of cervical spine ... and the massage & manipulation & traction--coupled with exercises I do on site and at home--are making a huge difference. Best, m

Persephone, you've gotten some FANTASTIC responses here ... Everyone is right on the money--everything matches up perfectly with what I've read in medical literature and heard firsthand from several cardiologists. You go, girls! I don't have much to add--other than that I want to redouble what RunnerGirl wrote about that 220 minus your age formula. That is for "average/healthy" people who want to figure out their "optimum" maximum heart rate for a cardiovascular workout; it has nothing to do with HR on a day to day basis ... and for all the reasons stated, dysautonomics have higher heart rates than the average bears'. Not to worry. On my stress echo test, my hr easily went to 197 and they stopped the test. I could have gone much longer on the treadmill and raised my rate much higher (which tells me that with exertion, my hr typically goes above 200), but they wanted me to stop. One question: What do you mean you "failed" the test? Failure has meaning in school--not in medical testing. You either tested positive for POTS (with a 30 + bpm increase in hr, sometimes accompanied by BP drop) or you tested negative for POTS. It's quite possible as someone said that you have IST and not POTS--but both are dysautonomias as I understand it, and some of the treatments are the same: compression hose, salt, water = first line of defense ... then beta blockers etc. (By the way, I wear them all the time anyway, but I was told NEVER to exercise without wearing compression hose. I hope you're doing that too...) take care, m

A footnote: I just called the new doctor's office to say I wouldn't be doubling my dose of Toprol and that I wanted to cut it in half instead. I talked to the nurse--described my side effects etc. She called the doc and then called me back to say OK. So there's something! Thanks to all who empowered me from the sidelines, m

Gayle, you're funny! Me too! We are peas in a gatorade-pod!

Hmmm... Not sure what site you're looking at, T. It's true that Natura makes a number of different kinds of pillows ... but the comfortfirst URL shows the wool contour pillow. That's the one I have... The contour pillow is the one with the cervical roll for support. Here's a blurb about it relating to allergies: "The Contour Pillow is non-allergenic, made from one piece, or batt, of wool. And due to wool's dry environment, there is no build-up of mould or mildew. Studies have shown that the levels of dust mites in wool are so low that they are undetectable by allergy sufferers. Unlike traditional materials, the Contour Pillow doesn't lose its shape, and provides a comforting sleep for years to come." It's true that it lasts for years ... and to be clear, you don't come into contact with the inside of the pillow! You can't tell what's inside (unlike down, which I'm very allergic to--and the feathers sometimes come out of the lining and you can feel them between your fingers etc.) The outside covering of this one is really thick ... and if you like a firmer flatter pillow, this is great. If you spend any part of the night/morning on your stomach, you just flip the pillow over--and that too is really comfy. It's a bit of a pain to flip the pillow when you're half asleep, but that's how it goes. Last night was my 2nd night on this new one ... and it really does support my neck in a way that can't really be duplicated. (I've got that same bulging disc at c5-c6, not to mention arthritis etc.) I actually do feel different in the morning!

Mary, my pillow (the Natura one) is wool on the inside, but the covering, which is really thick and nice, is cotton. Tempurpedic is all human-made. I tested allergic to wool as a kid, and I think it was part of my allergy shots (15 yrs, once a week). I still have some sensitivity, but it's extremely mild and very very livable. If you're curious about this pillow, though, I'd call the customer service folks at Natura ... I found them to be EXTREMELY nice/helpful, and they could answer your questions. Number's on that web site ...

Ginger, we're on the same drug ... Lopressor and Toprol XL are both Metaprolol, although Lopressor is not extended release, while Toprol is. (I just called the pharmacy to see what was what ... and what the lowest dose is--25 mg. ) Were you monitoring your own bp at home when you started on this beta blocker? Or did you just know your bp was low because you felt so wiped out? (I don't have any kind of monitor...) I'm sorry to hear you still feel icky--whether you take the meds or not. That's so frustrating ... I had one pill left of my 50s last night--so I just took 1/2. Today I still feel tired, but much less so than yesterday on 50. Can you imagine that I'm supposed to start taking 100 mg tomorrow!? Uh, I don't think so! It might lower my heart rate to "normal," but I doubt I'll be able to get out of bed! (PS I just read on a drug site that one of the side effects, in addition to fatigue, is shortness of breath and asthma ... and to "be careful on stairs." That kind of made me laugh--I'd love to see a direction somewhere "OK to be reckless on stairs"--but it added confirmation that my reaction to running a few steps the other night was not a fluke, but expected ...) Take care, m

Gayle, what can you do for them? (Sorry today was tough ... Ick. Hope tomorrow's better!) PS read my note about pillows...

Hi -- I wanted to add a post to this thread... I shared info about the pillow I had been using (see 12/18 description) with my PT, and he thought it looked good, so I ordered a new one (which finally arrived yesterday!) I guess my old pillow was (incredibly) about 9 years old ... and while it didn't show the wear, the cervical roll part was definitely much flatter than the new one! Anyway, I wanted to share info about it for all you folks with cervical spine issues--especially for those who don't really like the tempurpedic approach, which I really don't. It's stuffed with wool, not cotton ... and the cervical roll part is firm and supportive in all the right ways. (I have to add that it takes some getting used to...) The height seems right...and seems to take the weight and pressure off your shoulder and neck. You don't cave in on yourself when you're on your side. (Gayle--you might love this pillow, given your post!) Here's an URL from one company that sells it--but there are others. The picture here, by the way, is a bit odd. It doesn't quite look this way! http://shop.store.yahoo.com/comfort1st/nawoclcopide.html Also check out the company that makes it (they do bedding and all sorts of things--different theory than tempurpedic). http://www.naturaworld.com Sleep tight, everyone. Merrill

Amy, I just wanted to add that I'm in your corner on this one too. It's very frustrating ... and more. I can be telling my husband something and then stop mid sentence--with no idea where I was going or where I'd been or what word should come next. I rely on other people to be my memory. Good friends are good sports about it, and I try not to get too upset about it. It's hard sometimes though. One more thing. But as you can see, you are DEFINITELY not alone! m

I was told by a leading POTS researcher that 25% of NORMAL (not pots) people faint during the tilt table test. Fainting or NOT fainting has nothing to do with a "postive" or "negative" test result (tho it certainly affects one's perception of the test itself ... I'm being ironic here ... ). I didn't faint. But my test result was considered positive because heart rate increased more than 30 bpm in the first 10 minutes. (And according to a new cardiologist I recently saw, testing postive for pots on the tilt doesn't even mean you have pots--now ain't that a kick in the pants? Apparently you can also test positive if you have inappropriate sinus tachycardia ... ) There are other indicators of dysautonomia--and other tests that can be run. If you don't test positive for pots on the tilt, do you expect the doctor will simply show you the door? If he does, then I hope you can find another specialist who will talk over your symptoms and help you figure out what else could be going on. Remember too that they haven't figured out a cure for all this wacko stuff we deal with each day; it's a matter of doing what we can do to ease the symptoms. We need to strengthen our bodies and our spirits and try not to let the former rule the latter. Know what I mean? I hope you get answers to your questions -- starting tomorrow, if not tonight! Good luck, m

One more note--Emily's spending a night or two in the hospital, so she won't be posting for a while. I'll let you know if I hear any more news. Surgery was done laproscopically, so that's a good thing.

Hi -- I've been checking my email every five minutes, so this news just in: Merrill and DINET Friends everywhere!! Everything went great...I just popped home for a bit to answer calls and emails...Emily's dad is staying for a couple of hours. The doctors and nurses and everyone were on their toes and gave Emily all the care she needed and she did very well... She has the usual discomfort from that kind of surgery, but she just walked the hallway and did well... She was eating a popsicle when I left!! Emily and I appreciate all the thots and prayers, the picture of Sting, the Kermit song, the meditation CD and so much more that you sent our way...We were calm before the surgery and relieved when it was over. Now we need to decide who the winner of the contest to get the gall bladder is... All our love and thanx to you! Renee and Emily

Nina, I don't suppose you've got a list of ssri meds, do you? I always forget whether anti-anxiety meds like xanax are part of that group or whether they're otherwise classified ... and whether they're supposed to help POTS symptoms as well. thanks m

Thanks--I actually have quite a bit to learn! I thought beta blockers were supposed to regulate heart rate and rhythm and keep the affects of adrenaline on HR in check ... I didn't realize they also lowered blood pressure. Errrr... Amy, my BP seems to always test out in the normal range, but definitely on the low side of normal as opposed to the high side. Is this why I'm feeling more pooped on 50 mg? Although you say you're pooped on 50 too, so I don't know! Maybe your pooped has something to do with running after a toddler and changing poopy diapers!? I don't know how you do it, girl... (To be honest, on 25 mg, I didn't feel anything different ... but maybe it was because it had only been 2 days and my body didn't know something new was happening?) Maybe 100, though, would be a big mistake!!! I know a lot of people on the forum take beta blockers ... is anyone taking 100 mg? (if the fact that it's extended release is important, lemme know) I'm 5'7 and 145 at the moment ... but now that I'm back in yoga and have my new tanita fat/weight scale, I should be 135 in minutes! I reveal this oh-so-personal info just in case it could be relevant... Last night was not good ... I ran up some steps (first time I exerted myself since starting the meds) and could NOT catch my breath. My heart was beating hard and fast, but not as fast as without the toprol... but the chest pain and heaviness and windedness that lasted for a LONG time was quite new. It wasn't THAT many steps! Cheez! Walking two blocks in cold snowy windy conditions later made things 3 times worse, and triggered asthma and more pain. OY. I wanted to thank those who shared their holter experiences on that other thread--and I'll respond more personally later. Thanks, m

Third try was NOT the charm; I lost that one too. Seem to have no problem posting for others... But I'll try again now. I'll keep this short. I had a (somewhat miserable) appt w/new cardiologist last week. Could I be exaggerating when I say he didn't ask a single question? Before he came into the examination room, I'd been interviewed by my Favorite guy--a cardiology fellow who helped lead me to a rather quick (comparatively) diagnosis a year ago. He's great ... And perhaps he'd already filled in the cardiologist by the time he'd walked in the door. Anyway, he walks in and says, "I don't think you have POTS; I think you have IST (inappropriate sinus tachycardia, for all you newcomers)." I said "what about positive TTT result, w/HR rising 40 beats in first minute?" He said IST people can test that way too. I said "what about my HR going down during my sleep?" He said "It didn't go down all that much, and your average for the 24 hours was still over 100." I asked what it was for other people, and he said between 60 and 70. I wasn't thinking clearly enuf at that moment--I should have asked what it was for POTS people! Sigh. From the articles (URLs repeated below) I've read, IST is another form of dysautonomia anyway... He mentioned ablation and I shook my head and said no way; not having that (THANKS, YOU GUYS!!!) He said it wasn't first line of defense anyway--Beta blockers are. I asked about florinef or midodrine along with it; he said no. So here I am, nearing the end of one week on 50 mg of Toprol XL and he wants me to go up to 100 mg starting in two days for a month and then call. I've emailed the cardiology fellow--I think 100 mg so soon is way too much ... I am EXHAUSTED on 50 ... or maybe it's the physical therapy? Am I doing too much all at once? Not much I can do about that ... What bugged me is that he didn't ask me about how I felt--he didn't ask a single question about what other symptoms I'd been experiencing (and I came prepared with my completed Vanderbilt survey and everything) . So now you see why I asked what your holter results showed. Mine, by the way, showed high of 167 at 11:30 at night--I remember that I was laughing really hard at that moment, reading my husband my "diary" of the day--I'd fallen asleep at my desk twice!--and 67 was the low at 6 in themorning or so. Average 101. I gotta run; my ride is here and I don't want to lose all this! Questions? Comments? Thanks in advance, Merrill http://heartdisease.about.com/cs/arrhythmias/a/IST.htm http://heartdisease.about.com/cs/womensiss...ysautonomia.htm

Rita, why are you tapering off the florinef? Just curious ... And are you still on any beta blockers? Curiously yours, m

Good luck, Geneva. You're gonna do great! I'm impressed with your preparedness ... everything is set. And it's normal for your ANS to have reservations! That's that, but you are you ... and YOU are as prepared mentally and physically as you could possibly be! There's an image in Belleruth Naperstak's Successful Surgery CDs (which I used before mine and Emily is using before hers) -- even tho you're not having surgery, it's a helpful image that you can use too! Imagine that you're surrounded by "a magical band of allies" -- everyone you ever loved and who ever loved you--including special animals. This would also include all of your allies on this Forum! We are all surrounding you, cheering you on, proud of your accomplishments and all you've done to get ready for this test, proud of this step you're taking to care for your health and wellbeing. Your band of allies (including the doctors and technicians) will be with you in the procedure room and will see to your safety and confidence and recovery throughout the day. Please let us know how you make out as soon as you feel up to posting again. Best, Merrill

Reading Earthmother's reply to Persephone ... and also reading this string ... motivated me to type up this poem. Pain--has an Element of Blank-- by Emily Dickinson Pain--has an Element of Blank-- It cannot recollect When it begun--or if there were A time when it was not-- It has no Future--but itself-- Its Infinite contain Its Past--enlightened to perceive New Periods--of Pain.

Geneva, even tho it scares me too , I'm going to get one of those scales--but I'm bumming out that I just used my 20% off Bed Bath & Beyond coupon on a dumb pair of tongs! I couldn't think of anything else I absolutely needed--though I certainly saw lots of things I wanted! Shoot ... I've got to rummage through the recyling now to see if I can find another coupon. Oy. Thanks for the info, Kite. And welcome here!

I've been wanting to post these two URLs for a while ... this string is as good a place as any, I suppose, tho you may see them reappear in a future post. I like these easy-to-read/understand explanations; maybe you'll like them too? http://heartdisease.about.com/cs/arrhythmias/a/IST.htm http://heartdisease.about.com/cs/womensiss...ysautonomia.htm Also, I'm going to repost the URL to the vanderbilt doc; it's several pages long, but one of the pages has a symptoms list. You'll probably have a few symptoms to add (I did), but it's pretty thorough. http://www.mc.vanderbilt.edu/gcrc/adc/adsquestionnaire.PDF