Merrill

I agree with the advice to hang on when you get off. (I'd even recommend stopping the machine and then standing there, holding on, for a minute or two. Get off slowly and wait a bit before walking. I've only been on a treadmill a few times, and every time, I felt so strange when the machine stopped ... kind of lightheaded and off balance, legs a little jello like. I don't typically suffer from syncope--only on occasion--but after the treadmill, I do feel a bit dizzy. This passes, and I do hear it's great exercise if you can't walk outside or in a mall. (That's preferred for me b/c it's air conditioned. Not that I actually do it regularly or anything. ) The treadmill has another advantage: rails to hang on to. Go slow and good luck! m

Oy! Be careful out there! Hope you feel better soon, m

Opus88--couple questions... what do you mean "moist" salt, not easy pour? I'm not sure I've seen that before (tho I've purchased sea salt before--I might be getting the wrong kind). Where do you get it? also, what form does the magnesium lactate come in? I'm not great at swallowing pills--can barely get the tylenol capsules down w/out choking... a lot of multivitamins and calcium etc are all too big. I'd like to try the magnesium` but wonder about it... Also, do you know if it's OK to take that as supplement if you don't know that your levels are low? I've had a lot of blood work in recent months, aned don't recall anyone reporting that my mag was low... Just curious; always game for trying something non-prescription! thanks, m

I just thought I'd post today to say how disappointed I am that I'm not going to get my results for perhaps another week! (They were due today, after 2 weeks... ) I'm annoyed too; I hoped to have the results to take to my follow-up w/cardiologist on Wednesday afternoon. I'll call again on Wednesday morning just in case... but I'm not counting on it. Phooey. m

Boy, that sounds like a ROUGH day! Ten minutes, huh? I wonder what would have happened if you'd taken a dip in the pool and then sat in the shade? The trick, obviously, is to keep your core temperature down as much as you can, and it sounds like being in the shade wasn't enough. Being wet--especially if you dunk your head and keep your hair wet--and in the shade would be cooler than simply sitting in the shade while dry. So that's one suggestion for how to handle your next trip to a pool/beach... I also recommend being sure to start the day well hydrated and then stay hydrated with lots of gatorade or other electrolyte drinks (and water). Salty snacks a good choice. Do you have a cooling neck wrap yet? That would be a must for you, especially where you live! If you do a search on this site for "cooling neck wrap," you'll find links to web sites where you can order them. My April vacation in a very warm place was absolutely saved by my wearing one. You can improvise with a neck scarf soaked in cool water; it will stay wet and make you feel cooler if you coil it first before tying it (loosely) around your neck. Tying something similar around your wrists can also help. An amusement park in Alabama in the summer sounds like it would be brutal for you--unless you get a cool shady day. Does that ever happen? Maybe wait, as Jess says, until the Fall? I guess that's all I got for now; good luck! Merrill

Hi, Jennifer! That's a pretty name... Vent away, m'dear, vent away. That's what this is all for, yes? A safe place to let it all out... whatever "it" is!

Danelle, your post of June 18 struck a cord w/me. You were so smart to show your husband what happens to your legs! I agree that men need concrete evidence to help them understand! I've been making it concrete for my husband for the last few months--starting at the time I got agressive about pursuing a diagnosis. I wanted him to understand why I was going through all the tests, so I'd put his hand over my heart when we were lying down and had him measure my beats against his (twice as fast). I'd point out that even lying down, my hr was faster than what his gets when he's jogging! And every now and then, I still will take his hand and put it over my heart and say, "Feel how fast I'm beating!" I think he gets it now... even to the extent that he took my freezing cold hand in his the other day and said, "your hands are so cold--is this the POTS too?" I just said mmm hmm ... and let him think his thoughts. (I always tell him in the morning when my hands have gone numb during the night--or sometimes he'll awaken on his own to the frantic sounds of my trying to wake them up and get the blood flowing again.) He's very understanding and sweet, and I'm so lucky...He knows I just need to say these things out loud, to tell someone about my experience and then we both simply move on. He can't make it better or make things go away; he can just listen and give me a hug and maybe do a little extra when I ask for help. He commented to me yesterday that I was very lucky to have found friends on this forum that I can talk to about all this. (I had been complaining that my in-person friends don't really get it. Some don't know about it, others know but don't ask or pusue more information on it.) take care, merrill

Briarrose, what do you mean by "top of thigh high"? Thigh highs and to the waist hose are the best (and only) kind I was told by my 2nd cardiologist to wear because there's a risk of blood clots if you wear the ones that can reduce or cut off circulation behind the knee. (That's what I was trying to say in the middle of the night last night...) m

It sounds like with precautions and planning, flying is OK for folks with pots. At least it is for this small sample of people. I wonder whether anyone's heard of someone with pots becoming so sick with flying, though, that it was considered "unsafe" -- whether the resulting illness outweighed the benefits, say, of getting somewhere in 2 hours by plane rather than in 12 hours by car... or whether something happened to a pots person during flight that was somehow dangerous. (Is that what Emma was asking?) And may I say as a footnote how sad insomnia is? I'm typing at 4 am central, because some idiot decided to try to fix his car at 2 am a few doors down and across the street... I've been tossing since then, and thought I'd say hi to everyone in cyberspace. Off topic, I realize. Sorry!

I wonder what post you refer to... I don't think this is true, though one of my cardiologists warned me away from knee-high compression hose, saying that they could cause blood clots--depending on how they hit at the back of the knees.

Thanks, you guys. Nothing like a mutual experience to make one feel more at ease... It was true, I wasn't getting sick ... just running a fever is all, and I guess it was gone by morning. (I may be running one again tonight--I can feel it behind my eyes.) I do run a temperature more often than most people... I survived the party, tho for a while there, it seemed like I might do so just barely. When I got in bed, my body felt like it was humming or something--the room was spinning and I couldn't figure out where my center was. Very unpleasant... I took another 1/2 tylenol pm so I wouldn't notice the feeling for long! Gonna try to go to bed early tonight... Thanks for posting, Merrill

I agree w/everyone else who's posted...I've flown a few times since my diagnosis w/POTS (and regularly--all my life--before my diagnosis) ... I now do a little better, I guess, because I follow the advice that's given in the above posts when I fly. I wonder whether you have some other medical condition--other than POTS--that the doctor would be concerned about. Do you? merrill

Hi all. I'm wondering whether people find that they tend to run low-grade fevers on days they out-do themselves (activity/physical work-wise) and get kinda wiped out. (When I say low-grade, I mean 100 degrees or lower.) Body temperature is controlled by the autonomic nervous system, right? My huband and I are throwing our 2nd annual Summer Solstice party tomorrow night (wish y'all lived 'round here-you'd definitely be invited ) and I took the day off work today to get ready. For me, that included trips to 4 different stores (don't ask ), and a whole lot of shlepping heavy bags etc. By the time I got in the house this afternoon, I thought I'd collapse! Actually, I did collapse on the bed and left the putting away of things to my husband. (Lest you think he lazed around the house while I shopped, he didn't! He swept the street in front of our house--you'd think it was mid-October with all the leaves and tree debris--and washed down all our outdoor furniture, front and back, and a whole lot of the heavier labor type stuff.) We're expecting something like 40 adults and 17 kids... Anyway, I rested a while until my heart stopped beating out of my chest and even fell asleep for a bit; tonight I washed and cut up vegetables--sitting on my kitchen stool the whole time. But I've also started running a fever, so I'm not feeling terrific. I hope I'm not coming down with something, but I'd like to be optimistic and just say it's the POTS and tomorrow will be a different day. (Maybe I'll take a tylenol PM to ensure a more solid sleep.) Ideas? Similar experiences? Thanks guys--hope you're all staying cool, inside and out. Merrill

Yes, you're probably right about sharing those details ... for some reason I felt a little shy about that when I first posted. (And now I realize that some of my details could have helped you get through it a little better... sorry about that! ) I asked about the air tube that sits just inside the nostrils; my technician said it was measuring air intake. I asked--what if I breathe through my mouth--and she said it still works. Ahh, the miracles of modern science. The whole thing is just so weird--and cool at the same time. In the morning, my technician talked to me first through the speaker... then came in and turned on the lights etc. She also gave me advice about getting the stuff out of my hair. (I have extremely thick, curly hair...) She said to wipe as much of it out with a washcloth first before hitting the shower. I think that did help. (Gee, I feel so bad I didn't tell you this before, Migraine! Grrr... do you have another name? I feel funny writing that... ) I had a feeling my technician wouldn't tell me anything too--but I asked her anyway "Are you allowed to tell me anything about how I slept?" That's when she told me about my apneas on the left side but said the doctors would be analyzing everything in much greater detail. And may I just say how amazed I am that you didn't get up in the middle of the night to pee? I had forgotten that you were pregnant! I'm not, and I still get up every night... You must've really been hurting! (Never mind the finger...) Michigan Jan, don't chicken out! Did the one 15 years ago yield any interesting results? Did it help you in any way? Do you think your sleep habits have changed? It's true that one can have better and worse experiences in the study, but it sure is a fascinating thing to go through. (I mean--it's not altogether pleasant--don't get me wrong, but I'm interested in human physiology anyway, and I think it was an interesting process that hopefully will give me some useful information that in the end, just may help me feel better. Bad sentence--sorry, too tired to edit.) Sleep tight, m

Oh, dear! I'll be thinking of you as wait for your results! (I will call my primary care doc, who knows nothing of pots per se except for what I've sent him/told him, on Monday to see if he's gotten my results. It'll be 2 weeks.) Is that how long you have to wait for your results too? It sounds like a dreadful experience; mine was a little better, though certainly we shared many identical challenges. I complained bitterly in the morning about the thing on my finger--the pain was horrible during the night, and I had a deep dent in my forefinger for a couple of hours the next day. Ouch! Didn't expect that. Who you get for a test technician makes every bit of difference. Yours acted inappropriately, I'd have to say. I liked mine a lot; she had a very calm and soothing demeanor, and she said a number of things to put me at my ease--even though I too had to wait a long time before getting hooked up. No line for me. (She ensured me that I would indeed fall asleep, despite looking and feeling like something from Frankenstein's lab...) After I told her that I was a tosser-turner and was concerned about disconnecting the wires, she told me what she said she tells everyone: just be careful when you turn over. She said it helps people to actually turn less during the night and to stay more stable... it worked for me, tho I still woke a number of times. I woke from a dream after 2 hours and felt frightened and a little sick to my stomach. I felt no shame in pushing that button and getting her in there to disconnect me so I could go the bathroom (thank goodness--and she was nice about it). My sleep study actually took place on a floor in an actual hotel that the hospital leases across the street! It's always so tough to get the blankets and temperature just right... and certainly it's impossible to predict what it'll be like or to be completely prepared. Try not to beat yourself up about that. You may actually have slept more than you think you did... Did they measure your blood pressure? I can't remember... they measure pretty much everything else! Thanks for posting about your experience (I don't know why I've prattled on about mine... your note triggered some memories, I guess, that I hadn't written about here before.) I hope you catch up on your sleep soon! And let us know what you find out too! Take good care, merrill

My sincerest condolences, Nina, to you and your friends. This is a devastating loss... I wish them healing and peace, merrill

That was so considerate of you to post (rather than to disappear and leave us all wondering where you went and how you're doing)! Your "voice" will be missed. I've only been around for a few months, and already I feel better knowing that there's a community out there for me. I'm glad to hear that this community has helped you too... Stop by and say hi sometime, OK? (If that works for you, of course. ) Most of all, I wish you days of good health and happiness--wherever you may roam. Take good care, Merrill

Jess, I want to write a longer reply--and I hope to do so later--but for now, just a quick thought. I wonder how that scene at the restaurant played out. Who said what and how was it said? (Did David sit down w/Ethan or did you?) I find that humor--as much and as often as possible--is the best medicine. When I read that part of your post, I thought of that line from Willie Wonka and the Chocolate Factory: "Scratch that, reverse it!" (Willie says it all the time when he verbally bumbles something...) I somehow pictured you responding to David's suggestion by smiling at him and saying, "Scratch that, reverse it" and then you grabbing Ethan from his arms and going and sitting down! That's the image that came to mind, anyway. David was probably just pooped too and wanted to sit--not thinking ahead to what the standing would do to you. You--and everyone who responded--are so compassionate...you know too how hard it is to keep someone else's needs at the forefront of consciousness all the time. And something tells me that people with pots tend to be "future problem solvers" because of the jams we know we can get into if we're not careful or if we don't plan ahead. Certainly not everyone is like that (and especially not men!) ... Gotta run, take care, keep smiling, m

Danelle, I'm like you, recently diagnosed but have had symptoms forever (since my teenage years and I'm 42). I agree w/earlier post--there are years of better health, years of worse. I've definitely been worse the last 18 months or so (which is what drove me to pursue a diagnosis, I suppose--maybe it's that way for you too?) Perhaps it's the case that the things we now know to do for ourselves just take some time to work... or maybe it's just time that we need! No way to know for sure. But because I haven't always had the range of symptoms I now have--and because each day seems to be different from the next (some better, some worse)--I tend to think I'm not moving in a single (downhill) direction. Hang in there, kiddo.

Congratulations, Jessica! This is all wonderful news! I'm glad the house-selling part didn't drag on as it sometimes can. And I think it'll be great for you three to be near your parents! You'll put the pieces together and create a Florida group if there isn't one already... But remember, you'll ALWAYS have your friends here on the Forum! Best, Merrill

Jessica, you guys decided on Florida??? (how's the house sale going?) I should probably have sent an email, but I imagine others are wondering too.

Gwem, definitely sounds like sleep apnea to me! If you continue to have multiple episodes like this and/or to feel super tired all day, this may be an ongoing issue for you and you may want to get this checked out. (There are some no-drug treatments...) It's very scary when it happens the way it did for you last night...I've had that too. Ugh.

I'm not quite sure how to interpret the information presented in the article; I feel like I'd want to do a LOT more reading on the issue before getting too scared. (I mean, what could we do differently anyway?) But it's interesting, and I'll take a copy of this article to my appt w/cardiologist in a couple weeks and will bring it up if there's time. The article doesn't say a lot of things that would be important to us ... for example, even though heart rate recovery is a function of the autonomic nervous system, the article doesn't say how many of the 838 people in the study w/abnormal heart rate recovery went on for further testing of the autonomic nervous system and were diagnosed with pots. (It definitely doesn't say that POTS is life threatening/shortening.) Also, it says that researchers do NOT believe that having a normal heart rate recovery alone is necessarily a sign of reduced cardiac risk ... but hey, what do I know? I'm just workin' on a way not to have something extra to worry about today! Thanks for posting -- maybe others can check w/their cardiologists too? PS For what it's worth, I had a stress test followed immediately by an echochardiogram, and while my hr went up to 193 (I could have kept going, but the technicians didn't want to see what would happen when it hit 200 bpm), I think "recovery" post exercise was fine. (My resting rate that day was 148.)

For those of you who are having episodes of shortness of breath in the middle of the night--who wake up gasping for breath--have you been evaluated for possible problems with sleep apnea? (Sleep disorder is listed on Pots symptom list... so it may be another side effect of pots, but it's something that can be treated...) I'll know the results of my sleep study next week, so I'll let you know... The test technician told me that she saw me have apnea episodes during the night when I was lying on my left side...they may uncover more when they slow down the tapes. take care, m

Yup -- got it too sometimes -- feels like you can't inhale all the way sometimes, or quick short breaths. For me it's when walking or after stairs. Goofy, huh? Try to stay calm when it happens and trust that you're getting the air you need. m