Libby

This is totally wishful thinking on my part. But if I'm on meds to treat the POTS, then how do I tell if I'm heading towards remission? If my HR is currently controlled by (a lot of) metoprolol, will it drop into bradycardia if the tachycardia suddenly disappears? Will my BP shoot up to 200/120 if I'm still on midodrine? I'm exaggerating just a bit. But I'm really curious. If by some New Year's miracle tomorrow I wake up and I'm POTS-free, what would I experience. Anti-POTS?

Just complaining. Don't mind me. Yesterday, I had a bad reaction to all the rich holiday food. Fortunately it happened during the few hours break I had between seeing people, so I was able to puke in peace in my own toilet (silver lining haha). A shower and a nap and lots of toothpaste and I was able to drag myself up and finish out the day. And what do I do? I eat a couple of cookies for dinner because I managed to convince myself that fat-filled, buttery Christmas cookies could never, ever turn against me. Now it's 4am and my feet are burning (a huge POTS night symptom for me) and I'm sipping ginger ale trying to avoid a repeat performance of yesterday. Looks like I'll be back to the apple/applesauce diet for a while. Normal was fun while it lasted. /vent. Eta: Ginger beer is AWESOME.

"Any secret to morning activity?" Drugs. I take them right when my alarm goes off the first time, then snooze it for 20 minutes. THEN I get up. Gives them a chance to get into my system - especially the midodrine - and makes moving around a heck of a lot easier. Also, like micheller said, I try not to think about it. Ignore it as much as you can. Best example I have is that I'll black out when I stand up - my vision will go dark for a good 10-20 seconds - and I've found that ignoring it actually lessens the after-effects for me. If I sit down and think about how much I hate it, it's somehow so much worse. If I grope my way to the bathroom and start to wash my face instead of waiting for it to go away, it doesn't seem nearly so bad. Definitely a mind over matter thing.

How'd the appointment go?

I've never tried Intramax - let us know how it goes! I take Xtend Life omega 3 pills and a multi vitamin. I spent a lot of time looking into vitamin supplements last year - I wanted one from a company that guaranteed their quality, produced in small batches and had all of those batches tested for content at an independent lab. Also, I wanted the multivitamin to be coated so that it would stand a better chance of reaching the small intestine (and not being completely destroyed by stomach acid), and the fish oil to be without mercury. They were basically the only ones who fit the bill. The independent lab one, especially. From what I've seen, you can't really trust the vitamin's bottle to give accurate information. And I like them. I feel better taking them, but whether that's a placebo effect or not I can't be sure.

It seems like for many here the tiniest doses of meds can pack a huge punch. For me, it's opposite. Like, for example, I'm on 150mg of metoprolol and my tachy is still not completely controlled. Other meds too. I've never been sensitive to meds, not really. Is anyone else like that?

I think it's a combination of the heat dilating your blood vessels and the prolonged standing - also raising your arms above your head puts pressure on a few arteries that supply blood to your brain, which is another reason why some people pass out while shampooing their hair. I've found that rinsing my legs with cold water for a minute after/in the middle of a shower will make me feel so much better.

Jacquie, I know that some people raise the head of the their bed 6 or so inches or prop themselves up with pillows to keep their bp from dropping in the night. Doesn't sound very comfortable to me, but maybe it's worth a try?

misstraci - Ooo, the thing I hate most is the arrogance. When they speak to you like you're some uneducated nitwit who doesn't know what she's talking about and is obviously exaggerating her symptoms. I wish there were a way to pay them based on how helpful they were (or at least tried to be). Maybe we'd see a little improvement in their attitudes if their wallets were at stake . LOL, wishful thinking. This is REPULSIVE. PETs have been used for DECADES to find possible tumors and identify areas of increased cellular proliferation. I am so, so, so angry for you.

That's pretty much the reason - when you're not strapped down to a table, you can do things (move, fidget, sit down lol) that will mitigate your symptoms and keep you from fainting. Like I'll bounce in place. I used to think it was because I was just an antsy person, but now I can see that keeping my calf muscle working keeps my blood moving. I experimented at home after my tilt and found that standing perfectly still for 10 minutes causes the exact same symptoms. But it's better because at home you can sit down before you black out.

Mine was pretty standard. The nurse asked me a few questions about my medical history (found out that I was sensitive/allergic to sulfa, so the possibility of using meds to provoke syncope was taken off the table). She hooked me up to an EKG, put a blood pressure cuff on one arm and an IV in the other, strapped me in and had me just lie there for about 15 minutes to get a baseline hr/bp. Then she raised me up to a 70 degree angle - there's a lip on the end of the table so you're basically standing, not just hanging there - turned off the lights and told me to tell her if I started to experience any symptoms, then she sat down at the computer to monitor my vitals (no talking - it can mess with blood pressure). The bp cuff automatically inflated once a minute. About ten minutes in, I started to get hot (I thought it was because I was wearing sweatpants ), started to sweat, felt nauseous. The nurse noticed a drop in my bp and she came over and asked me how I was feeling. I just really, really wanted to sit down. Everything happened really fast after that, my vision went white, my hearing started to go, I wanted to puke. The nurse was very sweet and comforting and as soon as she got the bp reading she needed, she tilted me back down, turned up the IV and told me to move my legs to get the blood moving. I was feeling better within a minute or two, and on my feet within 10. I did feel kind of cruddy for about a week or so afterwards - my symptoms were a bit worse and more easily provoked - but not debilitated. The tilt test kind of surprised me. I had read all the posts, and people here were great about letting me know what might happen, but I guess I just didn't think it would happen to me, that I would faint. I figured that I would feel sick from the heart rate jump, but I had never passed out before - and I had definitely stood for forty five minutes. I really didn't realize how much I compensated for my symptoms without knowing it. Crossing my legs, fidgeting etc. If you're one for statistics, it looks like only about 1/2 to 2/3 of the people who have had previous episodes of syncope have a positive tilt test. It's more like 1 or 2 out of ten for those who've only had presyncopal episodes. It depends on the day and how symptomatic you are going into it, for a lot of people. But it's good to remember that a positive/negative tilt test doesn't necessarily indicate whether you'll test positive/negative for POTS. If you have a positive test, you'll likely be diagnosed with neurocardiogenic syncope. If you have a heart rate rise of 30 bpm or to over 120 bpm, you'll be diagnosed with POTS. You could have both/one/neither. I hope the tilt gives you some of the answers you're looking for. Good luck! Let us know how it goes!

So I was doing a little online shopping and I noticed that one of Amazon's Cyber Monday lightning deals will be an Omron Blood Pressure Cuff. The price won't be revealed for another 3 hours, 10am EST (and it's a first come first served, limited quantities type thing), but the discounts have been 50-80% off so I thought it might be worth checking out if anyone needs one. http://www.amazon.co...&node=384082011 Pull down the category tab and select 'Home and Personal Care' - should be right there.

Last year, mine was 5. Yeah. I'm pale. That reminds me, I need to get that rechecked...

Dizzysillyak - that is so incredibly frustrating. The comparing of the symptoms thing is what gets me the most - like it's some sort of competition. I WISH they could win, if that meant we would be better of by comparison. And it's on their minds whenever they see you, so it's hard to get away from talking about it. I don't really talk about POTS, off the forum. I just don't see a point. I do have a friend who has her own medical issues, so she gets it, and a few close ones who deserve an explanation for why I'm such a lazy bum . But otherwise...My mother is the worst. The only time she mentions it is when something's going on with her body. 'Brain fog. That sounds like what I have. Maybe I have your thing, too. What? No, I don't get dizzy when I stand up.' - last week she had palpitations. Then she wants to know about what my heart does when it freaks out. I think it's just beyond their comprehension. That you can look so normal, but feel cruddy - they just can't reconcile the two ideas. If we feel as bad as we say we do, we'd obviously LOOK sick. Ha. But I think I'm glad that they can't understand, if understanding would require them to experience this (though I can afford to be generous, as my POTS isn't so debilitating - if my symptoms were worse, I'd probably be beyond p*ssed at their attitudes).

ramakentesh - neither link is working for me I haven't read Medow's thoughts, but it's important to note that his area of expertise is pediatric POTS. I have 'significant pooling' in my legs, according to my doc. Sometimes it feels like my legs are a water balloon that someone is filling up until right before it pops. They ache when I walk and when I touch them. But visually they swell a just tiny bit and turn a nice shade of red, my feet especially. And, like with a sunburn, if I press my finger down onto the skin it pushes the blood out of the way for a moment and leaves me with a white patch (that lasts all of a second). They do turn blue as well, though not when they're badly pooling. My feet look dead, purple/grey and ugly. Blech. I let it happen at a follow up with my cardio once, while I was sitting on the exam table waiting for her to come in. She waited until the end of the consultation, but she went over and pressed down on my ankle (checking for edema, probably) but didn't seem concerned. I'm not in heart failure, I guess. Yay. But yeah, if I'm not moving my legs and calf muscles, it's pretty much a guarantee that my feet will turn some color.

I got a new job a month or so ago, and so I've had to take escalators and elevator rides 5 days a week for a while now. I've noticed that going 'up' on either of them will trigger symptoms. They don't get my heart going nearly as fast as regular stairs do, but I start to feel the blood being pulled down and my mind getting a little fuzzy around the edges. The nerd in me thinks it's kind of cool, from a physics perspective, but WOW is it annoying. Does it happen to anyone else?

Ohh, I totally understand. Crankiness is usually the first sign I get when my body's decided it's done trying to regulate itself for the day. It's so frustrating. I hate how snippy I get. Some days it seems like a miracle that I haven't slapped anyone. It reminds me of how I get when I'm really hungry (and I think that's why, for the longest time, I just assumed the POTS was low blood sugar), which I guess might make sense. The brain's not getting all the blood it wants, so in addition to oxygen it's probably being deprived of glucose too.

Oh, pulp. I wish I could give you a hug right now. Was the other heart monitor the psych recommended a holter monitor? At my first appointment for tachycardia, the nurse practitioner who saw me made it very clear she thought it was anxiety, but she ordered a 24hr holter. After it came back, she had no problem believing that it wasn't anxiety. I don't know what aspect of the holter made her change her mind (I guess I didn't fit the pattern for anxiety), but maybe having one could help you, too? It makes me sick that they're not listening to you, but I'm glad they're at least prescribing something that can treat your symptoms and make you feel better. Beta blockers were a godsend for me. There are a lot of them, so if the first one you try doesn't help, don't lose hope. Keep us updated.

I figured a lot of the people here would be able to relate. Unfortunately. It was the head rush comment that did it for me. It just makes me laugh. I wonder how he knows how his heart attack patients feel. He's probably had heartburn. They're basically the same thing.

Or maybe it's just a cardiologist thing? I just wanted to share my most recent experience. My cardio (or her PA, rather) was concerned about my holter. I was having non-sustained SVT, apparently, which she said was weird at my age. I have palps, but I've always thought they were PVCs so I pretty much ignore them. But my dad's side has a history of heart issues - not my dad, specifically, but my grandfather - who my uncle claims to have died of a faulty tricuspid valve. And two of my grandfather's sisters had valve replacements (I think. Details are sketchy, but they both had heart surgery in their 30s.) And my grandmother likes to talk about how her mother-in-law had 'some heart condition' that made her pass out randomly, mid-sentence - sitting, standing, didn't matter - and doctors rightly predicted that she would one day just not wake up after an episode. So if there's something else going on with my heart, I kind of want to know. We did another holter and it came back normal, but I hadn't felt any palps while I was wearing it. I told the PA very specifically that on the first holter I documented an 'event' that was identical to all the palpitations I've ever had. If it was a PVC, then case closed, see you in a year. But if it wasn't, then I wanted to look into it further. Turns out it WAS a PVC (found out later when I got my hands on the report), but I don't think she really bothered to read the specifics of the report and chose to err on the side of caution and send me to an EP. Anyway, this EP guy is who my post is mainly about. First, he rescheduled on me twice, which wouldn't have been a big deal if they had called me before I had come in for my appointment. Either time. Or better yet don't schedule patients when you know your surgeries generally go an hour over (his poor nurse told me this happens all the time). When I finally got in to see him, he spoke to me like I was a hypochondriacal five year old. He dismissed my palpitation concern within the first minute, saying they were just PVCs and acting like he was indulging me. Dude, I told that PA that I didn't need an appointment with you if they were PVCs. I didn't come in three times, wasting my time and money on a copay, just because I thought it'd be fun. Then he spent the next 20 minutes picking apart my POTS treatment (which I really wasn't expecting). Lectured me on fluids and salt, even after I assured him I knew their importance, told me that he doesn't like midodrine (sorry, but I do and my vote counts more) and thinks I could probably due without the beta blocker. And then he told me that when he was a kid, he would be 'sitting down studying' and sometimes when he would stand up, he would "get a head rush". So he totally understood what POTS is like. And it's good for the patient to have a doctor who understands what they're going through. ...I'm sorry, what? I almost laughed out loud when he said that. The appointment was pretty much over at that point. He asked if I had any questions, and I mentioned my family history (which I had told the nurse) and asked if that mattered. He kind of yelled at me, saying that I had no clue what other factors went into their heart conditions and until I had some actual evidence I shouldn't concern myself. It was one of the most irritating experiences of my life. I wanted to punch the guy. He told me he doesn't need to see me again, which works out perfectly because I have absolutely no intention of going back to him. The appointment made me realize how lucky I've been with my docs up until now. And it made me thank God that I have a neurologist for my POTS treatment.

Thanks. I think my trigger was puberty. I know that I started blacking out (but not passing out) on standing around 13. But I have had some symptoms which could be attributed to dysautonomia for as long as I can remember. I know I've had a fast heart rate (high 80s/90s resting) since I was a kid. I remember being in grade school health class and lying about my pulse because I didn't want to be in the 'out of shape' range. lol. I've always hated heat and I always been easily fatigued - or, as my parents would have said, lazy. It wasn't until college that I really had a problem with tachycardia, though. And part of me suspects I have a mild case of Marfan's Syndrome, so genetics may play a part in there as well...So either puberty, genetics, or just I had it all my life. Or maybe there really was no identifiable trigger and it's all coincidence. Hm. Looks like I'd have done better if the poll asked what definitely did NOT trigger my POTS. lol

O neg

Thanks guys. I thought it was just POTS, but totally new symptoms make me nervous.

I know I've seen references about episodes and attacks, but I've never really understood what people were talking about. I'm pretty predictable with my symptoms, even if sometimes they're a bit worse than others. With the exception of standing up/for too long, they don't generally come on suddenly. But last night I was in my room lying down, complaining to myself about how hot it was (75ish lol) and debating the practicality of closing up the windows and putting the air back on or finding another fan, when I suddenly just felt horrible. Extremely nauseous and so, so hot. My arms and legs shook when I lifted them and all I could think about was getting someplace cold. I'm not even sure what my heart was doing, I was so preoccupied. It actually felt like my ttt, right at the point where my bp bottomed out, just before they put me back down. Like I was about to pass out. But I was already lying down, so I really didn't know what to do. I made it down to the basement and dropped myself on the cold leather couch. It's always about 60-63 degrees down there, and after 10 or so minutes of just soaking in the cold, the shaking stopped. It took another hour or so for me to feel okay enough to get a glass of ice water from the kitchen, and I ended up just spending the night on the couch because I felt so much better downstairs. Nothing like that has ever happened to me before. And it wasn't even that hot. Does this sound familiar to anyone - I'm guessing it's POTS related? Could it just have been a kind of fluke, or is it likely I'll be having more of these (just based on your own knowledge/experience - obviously everyone's different. )?

Could puberty be added to the 'trigger' list? I can't remember having any symptoms before then...