StandUpSitDown

Thanks, PoohBear! Umm...... who are the Hokies in "Go Hokies"!???

From personal experience (sigh) I can say that you don't need to be underweight to have POTS. I wish we could donate weight! I'd pass a few pounds to each of you who need it.

....my primary symptom, other than the very fast heart-rate, is increasing chest discomfort. I've been given every cardiac test in the book, and those all come out crystal clear ("arteries of a teenager" and stuff like that.) I don't get the light-headedness, but I do get that discomfort, and within a second or two of lying down, the pain all goes away. The docs say this is waaay to fast for angina - if it was that, the pain would last some period of time after lying down. I am just curious if anyone else gets chest pain as their dominant presenting symptom. I think if this didn't happen, I wouldn't feel the need to sit or lie down as much, as it is the increasing pain that causes me to rest, not light-headedness.

Happy Birthday, Persephone! On days I ache in mind and bone I just think of her, Persephone and all the other folks out here Who I've just met, but now hold dear This is a crazy road we walk We type and chat and sit and talk And wonder where this road may lead and what will help us what indeed? Each day is new, we can't predict what symptoms our bodies will pick To throw at us each sun-borne day Why can't we throw this POTS away? In this world, we're misunderstood But for all that, there's one thing good 'cuz here we find some friends anew Who know what we are going through And now to you I write this verse It's way too simple, please don't curse That you can one day, past this rhyme Look forward to a better time And that's the wish I want to loan To you on this day, Persephone Happy Birthday, may it be grand May this year give you all you've planned

This is where, if you can get a diagnosis from a major medical center, you life changes dramatically towards improvement in these day to day situations. For the average ER doc, or family physician, if you give them a complex case, there will be motivation to not deal with it, or to write it off with an acceptible easy disease. Because it is so much bother to treat the tuff stuff, or they are afraid of malpractice, etc. Any of a number of reasons. But if you have a letter from Vanderbilt, or Mayo, or Cleveland Clinic, or Grubb, you've got this thing in your hand that your local doctor cannot ignore. And so you can force the real discussion, which is: "Are you willing to attempt to treat a patient with these level of symptoms." Put the question to them point-blank. With that letter of yours, they can't dimiss your physical ailment. So they will be forced to make that choice. Be prepared to have a lot say "no" - but I'd rather get 10 no's, and then, finally, that 1 yes, instead of getting a non-commimttal response right off the back, and force doctor hopping upon myself. Take care! SlipUpStareDown

I don't see all these symptoms as weird or random at all. If the autonomic nervous system is involved in it, there's a chance POTS will affect it. The autonomic/endocrine systems in the body are what I personally consider to be the biggest design flaw we have. They are so easy to mess up, as we all know.

Best of luck to you! Make sure you tell whoever you see what you described here - your symptoms not happening at home - only when outside. I'll say this - my symptoms don't have any clue where I am... that's another way to say I get them at home as well as out of the house. The major difference of 'at home' is that it is so easy to sit and/or lie down at home, that the symptoms never are allowed to get as bad. So my worst experiences are out of the house, but only because it may take me a while to get to a 'place to rest' - if I were to not allow me that luxury at home, I'd feel the same things.

dizzygirl - You are a true inspiration. This old-fart guy (me) sees a young gal like you pulling through with such spirit, and it makes me ashamed (in all the right ways) to feel blue over this stuff. I sent a venting note yesterday to the board. But let me say that all of you are beams of light in this, at times, dark room of POTS. And ultimately, every day that I can wake up and hear the voice of one I love - or such happiness that is in your post - that's a day worth living, isn't it? Not so cranky anymore, StandUpSitDown

Karyn - Thanks for this. I am a skeptic about 'magic-anything' so I had doubts. But I also know what mestinon does, and unless it does things we don't know - it wasn't about hydration at all. But I have to admit the conversations sound so different! I hope ChadK can help answer some of these questions, or gets that report.

normally I'm a pretty sunny-dispositioned person. But today, I just have to get something off my chest. I think you all are wonderful. I've learned so much from you, and I wish you all the joy and peace we all deserve. But I hate having to be here. I hate that my world is now focused on heart rate, on eating tiny meals, on devoting so much of my brain on the simple task of staying alive. I carry a frigging heart-rate watch with me that makes me look like a geek. I hate the fact that in all of this the nurses, bless them, look with frustration at arms that have had too many IV-needles in them already. I hate knowing the detailed operations of ER's across the local region. I hate the fact that I have such an analytical mind, and can piece thing together and learn so fast, bluntly faster than many of the doctors, because my mind is so focused on this, and they have many patients. I hate the fact that I have taught myself about all of these drugs, and can even begin to predict what other studies will say that I haven't read yet. I hate this because it means I can't lull myself into complacency as to where this is going. I hate the fact I have something that mainly affects the other gender, because when I go to doctors or places I have more than once gotten "POTS? Isn't that a woman's disease?" I have a wife who will do anything to take care of me. I hate that she has to. A husband is supposed to take care of his wife - not the other way around. I don't drive - I put the seat down in the car, and she does. When I am having a bad day and need to go to an ER, she pushes the wheelchair. She brings food to me. She is the only thing I love in this. And I hate that she has to do this. And in all ways, she shows she is still my wife, and I am her husband. Yet so much of what she has to do makes me feel like her child. And I hate that this is my lot in life. And my wife - her loyalty to me shines through so strongly that she has made this her lot in life. And I hate the fact that it hits her. I hate that more than anything it is doing to me.

Well, I am a guy, but I have a Reebok wrist-watch heart monitor, no strap needed, and except for width of wrist men and women are less different there than in the chest so I feel I can comment. LOL. It only monitors when you press a button. But it's right there on the wrist. When I wore a strap one that goes with my exerbike, I compared it to this, and they were within a beat or two of measurement of each other, so I view it as reliable. I will say, with the wrist, you need to give it a good settling down time.

Thanks for the well-wishes everyone. The advice regarding records is good. Fortunately, it has been a habit of mine for years to do that, because once you go from being in front of someone to being on the phone, it's much harder to get things done. The advice re: get questions answered is good, and generally it applies to all people I meet with in a professional setting. Generally, don't let them leave without asking what is next, and if you will see them, and if not, get everything answered. The point I will drive home is that I do want to stay until diagnostics narrow things down to as much specifics as possible. I have a rare window of time where I can spend at this without worry of things falling behind at work, so if I don't stay and figure this out now, I don't know when I would.

I start my experience at Mayo Clinic Rochestor on Monday. I am looking for diagnosis - nothing more. I get a higher heart rate almost immediately upon standing that levels out at about 30BPS above normal - and then any activity is 'bonus' above that - but at normal rates of increase. So if I am on an exerbike that will take it up a bit more, as I would expect. It's that initial jump that drives me nuts and makes me feel poorly. I purchased a BP cuff - and that never shows me going down, and I took it to 20 minutes a couple of times. But I gotta tell ya, it's hard to stand up that long unless I compensate by squeezing my arms against myself etc.. My chest pain has lessened greatly - I have applied both hot and cold to it, and hot seems to help more, FWIW. (I know this is different for others.) The big thing for me, honestly, is to know the what - wherever it leads. I told them I don't plan to leave until the what is found, so they know I am taking this seriously. And I don't know yet if it's typical POTS. I certianly have no blood-pressure lowering. Just that spike in heart-rate. Fortunately my PCP is a dream to work with - so doesn't freak out at Mayo helping to diagnose. But I have to say, folks, this whole thing *****. Just to let off steam: In May of this year I hiked 5 miles. Now, I can walk 20 lengths of the house back and forth and that's a work-up. And I have my wife drive me places. And I can't be in an all-day meeting I am supposed to be in Friday because there's no way I can sit up in that chair 8 hours straight (with breaks of course). Jeez. But you've all went through that too, I know..... so I am not looking for pity. But right now you see a person really annoyed at this situation. What a life-impact it is! So, yeah, I want a great treatment out of Mayo too. It's just that I am tempering my hope to just diagnosis to not get a bitter disappointment.

Doctors can also create a stress situation with drugs. You should check into this with your physician and see if it makes sense.

I seem to get it diagnosed "now and then" mine appears to be borderline. Have you ever had a stress echo? That's where mine showed up.

If I am standing by myself upright and walking I can go for a while. Probably about 15 minutes, which in my life (too sedentary) is equivalent to all I need to function. If I am stanidng by myself just standing there still, I start to feel things IN MY CHEST around 5 minutes. (not pain, but like something in the center of my chest is being streeeeeetched vertically in me) I don't feel faint, but my heart does race. I never ever feel really faint. Or maybe I would, but that chest stretchy feeling makes me wanna sit down before then If I am being driven in the car with sudden braking, I feel that stretchy feel. Here's the kicker: If I am standing up, still, and cross my arms over my chest, and grab the opposite arm with each hand, I can stand indefinitely (I stop trying after 15 minutes), and it seems that my heart doesn't race as much (I measure it with a heartbeat reader. I've read about 'counter-maneuvers' on this website, but they all have to do with fainting feelings or the leg. Mine all have to do with removing that stretchy feeling in my chest that causes me to want to sit down. I'm not trying to self-diagnose here, as I plan to take everything I read here to my doctor, but I am really curious if anyone matches my experience? At one level, I've felt really alone in this... until I found this place...

So what do doctors do withresearch like this? It sounds interesting, can match my symptoms, but do doctors in regular practice try this, or wait years for other results? Also, I see so many people refer to Dr. Grubb. Sounds like a great person, but a highly over-sought one. What about the doctors at Mayo or Vanderbilt, or UCLA? I see them referenced as doing work in research (especially the first two). Do they take patients. I am new to this, and have a doctor who is understanding, wants to do the right thing and is doing reading on this, but my doctor doesn't treat this regularly .So, this doctor is 'exploring' this - quite competently I feel, as this doctor is brilliant, but at times I wish I could see a doctor who has dealt with this before (no discredit to this person again, and compared to some stories I see here of doctors who refuse to deal with this, I feel blessed.) But I'd love to hear thoughts on this. My symptoms come and go. At best, it's like nothing's wrong. At worst, I am in bed. All started last year, at age 43. I sure was sick with everything under the sun for the past year, so doc is guessing viral vs. genetic, partially due to age of onset and gender (male). I also have constant chest pain... and the other thing we are looking at - and this pain has existed slightly for years, but it getting worse about the same time as all of this - it's a pain that hurts like heck standing up, and also, when flaring up, I can feel it hurt when my wife brakes suddenly in the car just for a second even - so it seems to be a pain that is related to pressure from something resting on something else. We'll see if this has any causal relationship to the POTS - like all of you - this is a journey of discovery for me. I have had tons of cardiac tests past 6 months - EKG, stress echo, stress sestamibi, chest CT scan for calcium - all look fine. So I really don't think my heart is clogged with pain. So I guess my question is: 1) Are there excellent places to look into this vs. just Dr. Grubb? 2) What do you typically see done with this research like the one I mentioned. I mean, I for one would love to see how I feel after a week on these... 3) Anyone else have this CONSTANT chest pain? I mean, it sure seems that when that pain isn't there at all, that I am feeling ok. Sorry to be so rambly. But I think people on this forum will know where I am coming from.