Libby

I've been seeing her for about a year and a half. She's definitely knowledgable and has been the most help of any of the docs I've seen. If you have any questions, feel free to PM me.

Mine definitely happened 'after'. I've experienced symptoms of POTS/OI/NCS for as long as I can remember, but the pooling is a relatively new thing - only a few years.

But, and I think this was mentioned by someone else in another thread, I'm not sure that I would have noticed my pooling before it got severe. My neuro points it out every time I see her, but my feet aren't generally turning colors during my appt (it's like taking a car to the mechanic - it never seems to break down when you want it to). My legs are maybe a little mottled pink and white, nothing I would have noticed if I weren't looking for it.

...I guess I'm not really sure how long I've been pooling.

Dani - in a non-POTS person, yes, increased heart rate will result in a peak cardiac output at a hr of around 180, resulting in raised bp. But there have been studies suggesting that the same doesn't apply to many people with POTS - cardiac output is actually reduced. (http://www.ncbi.nlm....pubmed/11503949). Dr. Stewart did an interesting study back in 2007, to see if the same applied to POTSies while they exercise. He looked at blood volume in different parts of the body during exercise and his findings suggested that instead of bp regulating hr and cardiac output, the blood pressure reflex was actually uncoupled from heart rate/output due to an increased baseline state of sympathetic activity in POTS patients. For POTS patients (particularly low-flow) BP was maintained through peripheral venous constriction, not through increased cardiac output. Cardiac output was only slightly increased from baseline and dropped to below baseline during recovery.

I got my masters in biology (cancer research, specifically - spent 2 years in a lab playing with mice), so I'm a bit of nerd about this stuff. Sometimes, I don't even mind having POTS because it means that I can experiment and understand some of the results firsthand.

Anyway. Everyone's body is so different - responds differently to different meds, behaves differently under certain circumstances...Propranolol slowed my hr, but it made getting up off the couch practically impossible. Studies can only tell you so much - you just have got to do what's right for you.

Lemons McBlond (ugh, my brain. sorry!) - what position do you get your vertigo in?

Propranolol - Increased fatigue significantly, increased breathlessness, lowered hr slightly

Metoprolol - Decreased hr significantly, decreased nausea, decreased the number of times that I black out upon standing slightly, lowered bp slightly, slight increase in fatigue

Florinef - Weight gain, gave me awful headaches

Midodrine - Increased bp slightly (mostly seen supine), decreased the number of times that I black out upon standing significantly, increased chance for a headache later in the day (usually if I take more than one dose), increased chance for headache when I lie down

Prozac - Leveled out mood swings caused by fluctuating bp, not sure if it did much else

Ritalin - Decreased brain fog slightly

Adderall - Decreased brain fog moderately, decreased fatigue moderately, increased bp slightly, increased chance of headache in the afternoon (usually if I take more than one dose), slight decrease in appetite

I took that also...it makes it worse because most of us need that high hr to keep up our blood pressure.

I'm not sure I agree with that. Tachy works to keep your bp up initially, but becomes counterproductive after a certain point. When your heart is beating THAT fast, the chambers don't have time to properly fill, meaning your bp is actually likely to decrease the higher your heart rate climbs.

It's what happens to us whose bp suddenly drops on the tilt test. BP keeps slowly falling, triggering the HR to climb - but it's past the point where that will actually help - so it keeps looping (falling bp increases tachy) until finally the brain decides to put a stop to it and drop you.

Pooling was the first thing that tipped me off to POTS. Actually it tipped off a friend of mine, who's been diagnosed with POTS for years. I went to visit her, but I had to do the trip without my midodrine because there had been a problem with Medco mailing the drug on time or being able to fill the prescription. After a few days without the BB, my legs were aching so, so badly when I stood. Taking a shower almost made me cry.

I mentioned to her, off-hand, that now I completely understood what she meant when she said her legs felt full and heavy. I think she ended up more freaked out than I did, haha. I knew she had something wrong, that affected her heart/stomach/legs/memory, and we had talked about it before - especially since I had been diagnosed with IST our junior year of college - but I guess I had always assumed that what she was experiencing was normal to have in moderation...because I was experiencing it too. And the idea that I had POTS never crossed either of our minds lol.

Anyway. We had a nice, long talk about POTS - and I learned that a whole lot of stuff that was happening to me was in no way normal. So the first thing I did when I got back home, after ripping open the Medco package and inhaling my metoprolol, was make an appointment with my POTS neuro who confirmed 'significant pooling'.

But now it doesn't matter whether I'm standing or sitting, if I'm on my bb or on my midodrine (that helped for a while, too); my legs swell up and turn purple or red all the time. Kind of embarrassing.

Of all the things that could be bothering me, this has somehow reached the top of the list. I guess because it can be really obvious and makes me feel so self conscious.

It's only my left eye. The upper eyelid droops - not all the time, but I'm noticing it more and more. I have a bit of eczema on that eyelid that won't go away no matter what I try, so I'm wondering if that's contributing. I asked my neuro about it and she surprised the heck out of me by saying that she already had it in her notes. Meaning that she had noticed it at a previous visit. On her own, because I know I'd never thought to mention it to her.

Yeah, she's a neurologist and it's her job to notice this stuff, but now I'm paranoid that I'm walking around looking like I've had a stroke and everyone is just too polite to point it out (everyone besides my mother and two of my close friends, that is. "what the heck is wrong with your eye!!" haha).

Is this a POTS thing? Is there any way to make it less noticeable?

I love my adderall. It does SO much for my concentration/fatigue. ADD runs in my family - my mother and brother both have it (neither has POTS), so I think it's a combination of POTSy brain fog and ADD for me. I've tried ritalin too but that just wasn't cutting it. I ended up maxed out and still unable to focus on anything longer than a few minutes.

I haven't really had too many unpleasant side-effects. It can really push my hr, but my bb takes care of that for the most part. I'll have a headache sometimes, if I have to take my afternoon pill. But the good definitely outweighs the bad.

The only thing I really don't like about it is the bad rap it's gotten, with ADD not being taken seriously/over-diagnosed and adderall being abused by high school/college kids. You need a new prescription every month, which is inconvenient...and I get the feeling I'm being judged by a lot of the docs/nurses when they see it on my chart. That's definitely annoying.

But I'd definitely say give it a try. I remember feeling jittery and I had a bit of trouble sleeping for a few weeks at the beginning, but that wore off. It was just like having one too many cups of coffee. Nothing too bad.

I'm so glad you're out of the hospital and feeling better!

I've been on BC since I was 17 - it was a combination of acne and bad cramps that convinced me. I've been on three or four brands, I think. Ocella, the generic form of yasmin, is what I'm currently on and I haven't had any problems. It's definitely helped with both the cramps and the zits.

Side note - BC also correlates to a 50% decrease in ovarian cancer risk after 5 years of continuous use (and, possibly, a slightly increased risk of breast cancer, mostly seen with triphasic bc - but breast cancer's cure rate is 93% and, given ovarian cancer's very poor prognosis, I'd much rather take my chances with breast)

It's just good to be aware.

From how I understand it, the isoproterenol injection is part of the NCS side of the test. They want to see if you'll pass out. It's not necessary for a POTS diagnosis.

If you really don't want to take it (and don't want to deal with trying to explain why...like talking to a brick wall, some of them) I'd tell them you're sensitive/allergic to sulfa drugs. Isoproterenol contains a sulfite; they won't give it to you if you claim you're allergic.

I took sulfa drugs for acne back in high school. Two weeks in, I developed a faint, non-itchy rash all up and down my arms. "Sulfa Sensitivity" technically, but it's enough to keep docs from giving me sulfa drugs, like the TTT injection .

I have an ice bag for my feet that I use most nights. For some reason, if I keep them cool then I'm less likely to wake up soaked and miserable.

On my TTT, my hr jumped 35 beats upon tilt, then climbed pretty steadily until it reached 155 at 15 minute and I bottomed out to 103 (with large bp drop).

But my hr did drop once durning the 15 minutes. From minutes 3 to 4 it dropped from 133 to 130, but it was back up to 135 at minute 5.

But even with that rise, my cardio diagnosed me with IST. And it was an after-the-fact diagnosis lol - I have the report and he came back 20 minutes after he initially signed off on it and added inappropriate sinus tach. Really? Yeah, it showed NCS, but my heart rate wasn't one of the first things to pop out to you as off? lol

Thankfully, my neuro knew what she was doing and what to actually diagnose me with. But it's just another example of how some people still have no clue what POTS looks like - even IF it's well within the diagnostic criteria.

Toprol XL, 100mgs.

A lot, yeah. It took a while to get my hr and palps under control. I used to be on 150, but I was able to cut down once we figured out that it was POTS. Getting midodrine and fluids added to the mix helped.

Nope, not dangerous at all. Apparently, a lot of people have PVCs and just don't notice. I don't know HOW they don't notice them, lol, because mine leave me kind of stunned for a second or two, but they don't. The v tach can be dangerous if it doesn't stop after a few seconds, but in people with otherwise healthy hearts (and those with mild MVP, for what it's worth) it's benign 99.9% of the time.

Regarding holters, I know that my first was ordered by my PCP. I had to go to the cardio's office to get it put on, but the cardio just wrote out a report and faxed it over to my primary's office, and then I followed up with her. Just in case you don't want to deal with finding a new cardio at the moment.

I definitely know what you're talking about with the bottom-drops-out description. It's been happening to me all night - I forgot to update my insurance info on the mail-order prescription website so now I'm stuck without my metoprolol for a few days. Not happy. Anyway. Those, for me, are just premature ventricular contractions (holter confirmed it). I'll also get what feels like fluttering - that's a string of 3 or more PVCs, otherwise known as ventricular tachycardia.

Both, according to my cardio, are harmless. Some of the research that I've read on v-tach doesn't quite agree that it's completely harmless, but at the moment I'm not hugely worried about it.

Both generally happen when I'm 'at rest' - my heart's beating slower, so there's more time for it to stick in a premature beat (again, according to my cardio)

Have you had/considered a holter to try to catch one, just to be sure it's not serious?

Honestly, I think I've been doing it for so long that I've just become accustomed to ALWAYS feeling terrible--as sad as that sounds. I come from a very...."driven"...family full of doctors, lawyers and other Type A folks. I'm kind of the black sheep and more of a "Type C+" person, but I've always felt pressured to succeed. In fact, when I was a child and beginning to experience some troubling symptoms (shortness of breath, exercise intolerance, etc.), my parents were quick to label me as a hypochondriac and repeatedly offered to take me to the hospital "to see kids who are REALLY sick." (Nice, huh?) I believed for a long time that it was all in my head and just had to push through it all--passing out a lot along the way! College, two graduate degrees and now this crazy job which is just the last thing in a long line of hard-won achievements designed to prove something....now that I'm older, I'm pretty sure all I've proven is that I'm exhausted and need a break! Probably a longer answer than you were looking for--sorry! :-)

Ha. You know, it's funny how much this sounds like my life. Driven parents (dentist and head nurse), accusations of hypochondria - my mother threatened to take me to see her severely asthmatic friend so I could 'see what REAL asthma looked like' when I complained about SOB (and then, after a sports coach made her take me to the allergist - where I WAS diagnosed with exercise-induced asthma - she told him, point blank, that I was a hypochondriac) - just being so used to always feeling bad that you push through it. I'm working 45 hours a week, finishing my masters and applying to med school. And just doing my level best to ignore everything that's going on with my body while I do it.

Anyway. I can relate.

Welcome to the forum!

Just to add to this thread, I have had pretty close friends and family ask me to tell them whats the matter with me and why i have been ill for so long. What makes me laugh is they give you a window of about 15 seconds before there eyes start to drift and they are not interested. Can anyone tell me how to expalin pots in 15 seconds becuase we all know these types of people. And so many of us it isnt just the Pots, its every thing else we suffer with too!!!

I came up with a great tage line the other day.

" People only want to talk about illness, once you are better"

I have a friend who used to ask you "How ya doin". I knew he didn't care and that was just something he said. I looked him in the eye and asked him if he REALLY wanted to know and waited for his response. It made him pay better attention. Of course, I didn't REALLY tell him how I was doing - but, he thinks about it before he uses it as a greeting now. LOL

Issie

I had a teacher back in high school - crotchety old woman who was INCREDIBLY blunt and liked to rant about things - who said something that really stuck with me. She said that when someone asks you how you are, the ONLY socially acceptable response is 'fine' (or some variant of). "How are you?" is just a rote phrase and no one who asks it is really prepared for any response OTHER than fine, so they don't want to hear it.

I'd say she was pretty spot on.

I love you guys.

This is just a rant. It would sound so, so stupid to anyone who doesn't know POTS. Feel free to ignore me - it was either write a rant or scream, so...

I live at my mom's for now. One of the things that I do is empty the dishwasher. Not a huge job, but I'm standing in one place for 10-15 minutes (depending on how many dishes need to be loaded), so can be triggering.

This weekend wasn't the greatest, symptom-wise, so I'm already not in a great mood when my mother comes up to me and starts going on about how I need to clean out my car today or she won't pick me up from the mechanics when I go to drop it off on Thursday, and then about how she paid a doctor's bill and it cost her 15 extra dollars because I never gave her the bill -

(long story...I'm on my father's insurance, but he screwed up and didn't renew it or something, so my dad gave her the money and my mom put me on hers for a few months. The insurance company was refusing to cover me for last September, and it turned out to be cheaper to just pay the bill out of pocket, and my mom wanted to keep the extra cash from my father (they're divorced). But she wanted me to call and see if they'd give me the insurance rate - which I did, and they would - and then she wanted the paper bill they sent (with the wrong price on it, btw), and I told her I'd give it to her, but we both forgot about it. And now it's all my fault. Just annoying)

- and then about how I need to empty the dishwasher, which is running, and I need to do it today, and it only takes 5 minutes, and she can't understand why I don't just do it.

It was really bugging me - I hate being called lazy, especially now that I understand why I hate doing certain tasks and it's NOT because I'm LAZY - so I went up to my mom and (nicely) said that I wanted to clarify a few things. I pointed out that I passed out 12 minutes into my tilt test and that my hr rose to 135 within the first minute so five minutes really isn't an insignificant amount of time for me to be standing in one place. Even with my meds. I told her that I wasn't trying to get out of doing it, and that I would do it, but it's not something that I love doing and there's a reason for my reluctance that's NOT just laziness.

She didn't really care. She started yelling about how I do other things just fine blah blah blah and how she doesn't want dishes in her sink - which I would totally understand...if they weren't most often dishes that she used, collected in her bedroom, then brought down after the dishwasher was already running. And left for me to put in the dishwasher after I unloaded it.

God, this sounds so ridiculous. It's not like I can't unload the dishwasher. Yeah, I'll feel symptomatic, but I'm used to ignoring that. I think I just wanted her to give a ****. She'll complain for days about a random skipped heartbeat, but the only time she's asked me about my health was when she got it into her head that if I ever got into an accident and the paramedics needed to know what meds I was on, she'd look like an awful mother if she wasn't able to tell them. And I'm pretty sure this is the ONLY time, EVER, that I've bothered asking for a little understanding because I know her attitude about this kind of stuff. I mean, in high school she said I was being ridiculous and threatened to take me to her friend's house and make me see what actual asthma looked like (her friend has very severe asthma) when I said I thought I might have asthma...two weeks later, my softball coach had to tell her to take me to the doctor because I nearly passed out at practice (surprise! I had exercise-induced asthma). Oh, and when we went to the appointment, she told the allergist, straight up, that I was a hypochondriac. Thanks for that. It's just how she reacts to other people's illnesses, apparently.

Ack. I'm only making myself more annoyed. I'm so stressed out right now I want to scream.

I'm going to go to Starbucks and work on my thesis. Probably won't get rid of the stress, but at least I'll get a yummy iced tea lemonade out of the deal.

A neuro who specializes in dysautonomia (I know, right?).

Mine too Such a lucky find.

Neuro. All the way.

Going a second time? More power to you. It's been over a year since I had mine and I still get nauseous thinking about it.

I know that a while back there was some talk about being given saline after the test is over (the line is in while the test is going on, though). It seemed like clinics generally gave it while hospitals were hit or miss, if I recall.

If you can get it, definitely go with the saline. Helped a lot with my recovery, at least.

For me, it hurts. Aches, really, from my mid thighs all the way down. From the pressure of the blood in the veins, I think. The skin feels tight and when I walk, my legs will ache a bit more when my foot hits the ground and the motion forces more blood into my legs. If I pat the skin, it will ache too.

My feet swell. The skin turns either red or blue (mostly down at my feet), depending on the time of day (red in the mornings/evenings - blue during the day), and if I press down on it, besides being kind of...squishy, ew, it acts like a bad sunburn would - goes completely white for a few seconds when I push the blood out, then goes back to red/blue. My feet also go either icy cold or hot (but the heat may be from the neuropathy).

It's worse after a shower. If I have to take one before my midodrine kicks in (which I do, way too often...stupid snooze button) all I can say is owww. The jarring motion of walking across the tile floor is just not fun.

Midodrine does make it much better, though. 30 minutes after my dose, and everything feels so much better. Not surprising, considering how the drug works...Still pools, but to a much smaller degree. No pain. And my feet only change color if I stay stationary for a few minutes (as opposed to the few seconds it takes in the morning). And the swelling goes way down.

I hope that helps!

Hi Nicole!

That's such an interesting story about how you were diagnosed! Reality TV is good for something.

And I totally hear you on the low blood sugar thing. I was the same. And it looks like you're right because you sit down or lie down while you're eating the sugar, so the POTS backs off...

I'm glad you've found us and that you've decided to come out of the woodwork. It's really, really nice to have a place where other people get it.

Welcome!

Ack. I'm glad you're alright and that no one found you and freaked out. lol, If I were to say that anywhere else...But ERs are pointless in our cases, most of the time, so I'm glad you were spared the embarrassment and annoyance.

And I hope your cramps ease up. I'll get them, but for only a few seconds - and that's more than long enough! I can't imagine it going on for a few minutes. No wonder you passed out.