Wendy C.

Kayla, great point about us being dehydrated in the morning, since we haven't had any fluids while we sleep. I drink about 10-12 ounces right away when I take my first pills, plus even a few sips of Gatorade. kayjay, yes, I think it is any shoe with some instability that helps me as well. I had wondered about those fitness shoes with the rocker bottoms, if they'd be good for us with pooling and it sounds like they could be. I looked up MBT shoes and they do look interesting, but like you said, expensive! I hope we get some more replies on useful tips, these are good!

Hi AmberK, I think the reason they help is because they make your calf muscles work the whole time you are standing still, so that encourages blood flow and would, in theory, discourage pooling. Also, you have to use your core/abdominal muscles a little more for balance, so that might reduce abdominal pooling as well. (a guess, no proof) I just discovered it by chance, kind of like lgail mentioned, and noticed my legs feel better in heels than in flats. I am 5'9" so I am not typically a wearer of heels, but hey, whatever works! I prefer to be barefoot at home, but when I go out, sometimes I can take off my compression hose and do okay if I have on heels and some abdominal compression. I did a quick Google search just now and found this article that explains how heels are good for the calf muscles: http://voices.yahoo.com/good-news-high-heels-they-build-muscle-484352.html Of course, there are plenty of articles that talk about how heels are bad for you, but that seems to be for those who wear them constantly and wear spikes, not wedges. Oh, I did mention this info to my Electrophysiologist and she said something to the effect of, "oh, that makes sense." I hope that helps. Wendy

Good idea! My tips are: -leave the bathroom door open with a small fan blowing into the room during my shower and all of the time afterwards when I am getting ready -sit down on a low barstool to dry my hair and brush my teeth, alternating putting each foot up on the counter when I feel pooling begin -lowered my home office chair to its lowest setting, so I can sit on a leg or cross my legs without hitting the keyboard tray when I feel the pooling begin -wear wedge high heels, even around the house, if the compression stockings aren't strong enough at certain times of day -use my iPad more than my PC, so I can recline or sit cross-legged on the floor if needed -put items at the top or bottom of the stairs that need to go up or down, so I can take multiple things with me at a time and minimize the number of times I go up and down the stairs -always wear yoga pants or shorts or dresses, to avoid the tightness when the abdominal pooling occurs (I've noticed that I have real discomfort with jeans if I am sitting down) -don't worry about answering the phone if I am sitting down, it is too hard to get up quickly and run to the other room, so I just check the caller ID or voicemail later on -most importantly - I keep an eye on the clock and take my meds and supplements on a regular schedule, so I do not get behind and suffer from it (Midodrine, salt tabs and magnesium are the 3 that I can FEEL if I am late with a dose)

Yes, but it'd have to be a somewhat cold sandy island, otherwise we'd all be too hot...

I don't have that with Midodrine, but when I trialled Florinef for a month, I absolutely had it. I thought I had a sinus infection, but there was no mucus, it was all from swelling. It went away as soon as I stopped the Florinef. Perhaps Midodrine is causing yours - meds can sure do some strange things to us!

Ok, well good luck with whichever plan you decide upon!

Hi Shannon, I also had been on Metoprolol during my pregnancy and until 8 months postpartum. I felt markedly improved within a week or two after I quit taking it, so I thought at the time that maybe a lot of my symptoms had been caused by it. I'm really not sure though, because some of it could've been a magnesium deficiency, but it is interesting. I know I slept better once I got off of it - I literally could NOT fall asleep for a single nap during the entire pregnancy, though I so desperately wanted to, and I suspect it was due to the Metoprolol. Ambien helped me sleep at night, but naps were absolutley impossible. Did you experience that, too? I'm glad you feel better now that you've stopped it!!!

Klgpdx, Just a quick update to let you know (and anyone else who read the original thread and was interested) that I did not notice a worsening of my symptoms up in Breckenridge. I just had my normal symptoms when I stood still too long, got too hot or didn't keep up with my water/med schedule enough, but I'd get those anywhere. So, are you going to move to CO? Wendy

That is great! Yes, I am getting better, too! I've noticed it in the past 2-3 months, as compared to how bad off I was from September through February or so. I have more good days than bad ones now and even on the bad days, it is really only a 3-4 hour time block that is bad, not the whole day. So, when that bad time block is occuring, I just try to tell myself to be patient, that it will pass by shortly. I'd say I am maybe at 85-90% of normal most of the time. I am starting to think there is something to the relapse/remission concept, since I've had 3 'relapses' in the past 6 years and they seem to last about 8 months. But, I also suspect my case could have something to do with a magnesium deficiency caused by long term use of proton pump inhibitors that just takes a few months of being off of the ppi and supplementing magnesium to resolve. I hope to start a new post about that topic soon, once I have more time to write and post some article links. Great post though-it'll be nice to hear about people who are getting better!

I use Finacea, too and it works pretty well. I still get flares of redness and bumps if I am outside on a cold, windy day, if I get too hot, or sometimes when I drink alcohol. One side is worse than other and it is only on the apples of my cheeks. I am not 100% certain if I actually have rosacea, but that is what the Dermatologist diagnosed me with about 10 years ago. Good luck!

Awwww! Very cool!

Sure, I will try to remember to post back after the Breckenridge weekend. Yes, I lived in the Seattle area for 2 years and know what you mean about cloud cover- it is so much sunnier here! We rarely ever have two cloudy days in a row. Storms tend to blow in and out within a few hours, whether rain or snowstorms. It is a great place to live!

Yikes, passing out up on a ski lift, how scary! I live in Colorado Springs, which is even higher in elevation than Denver, but I think I am just used to the altitude, since I've lived in CO for all but 5 years of my life. I'll be spending a weekend in Breckenridge, a ski resort, soon so maybe being at that higher altitude may affect me more, I will find out. We do get some low pressure storms and I notice my symptoms get worse, but we don't get that many of them. There were some good threads on this forum that talked about this subject, you can search under weather, storms or barometric pressure, as I can't recall exactly which they were under. Perhaps you can try a visit to CO and see how you feel while here? If you do, make sure to research "altitude sickness" before coming, so you can avoid that or at least be able to differentiate that syndrome from POTS stuff if you feel ill for the first 2-3 days you are here.

Dizzyde, I was initially taking magnesium citrate for a few months there, but I couldn't find the right dosage that got rid of my pre-ventricular contractions/tachycardia/noise sensitivity/dizziness, but didn't cause daily diarrhea. My Cardiologist suggested switching to magnesium oxide, since it absorbs differently, to see if it helped and it sure did. The only time I had trouble with nausea was when I took it with or close to any calcium, either supplements or milk/cheese, etc. It is funny, because the old research claimed that you should always take them together, but lots of newer articles say they are best taken apart and the recommended ratios of calcium to magnesium have changed as well. I've found that I have real problems when I get too much calcium- GI issues, muscle and nerve pain, etc. Anyway, now I do take my magnesium with vitamin d3 and salt tabs - and quite often, on an empty stomach. I recall reading that magnesium taken with anything with high sugar content won't absorb as well. There is a ton of info about magnesium online if you want to know more.

S-pot, that is interesting that Midodrine gave you a migraine. I really wonder what Florinef will do for your head then... It gave me a daily headache that felt like a moderate head cold or sinus infection, even though I was only taking 1/4 of a pill, so I decided to stop it. I took 1/4 of a Florinef pill for 2 weeks and it did make feel a little bit better, have some minor water retention in my legs for the first time and gain 4 pounds, but I just couldn't stand the new symptom of the daily headache. I tapered down to only 1/8th of a pill for a week and the headache did go away, but I started feeling very fatigued and my pulse pressure (difference between systolic and diastolic numbers) was widened at around 50 or sometimes low, at around 25, with lots of tachycardia. On just the Midodrine, my pulse pressure was always stable and resting heart rate was consistently around 75-80. So, my Cardiologist told me to stop taking the Florinef. I spent about a week taking only tiny slivers of it to ween myself off of it, since I'd read that many folks on here have trouble when stopping Florinef. Now, it has been a week since I stopped it and I do think Songcanary's doctor was right, because I do feel like I am more hydrated than before and I've even been able to add back a small amount of caffeine into my morning cup of decaf coffee and that makes me have a lot more energy throughout the day. It was weird, I actually woke up from a few dreams about me desperately seeking coffee, so my body must've been craving it for some reason and it is helping, so I'm glad I'm 'following my dreams,' haha. My pulse pressure and heart rate have now gone back to stable, as well. Still can't get my BP above 114/72, it is usually at about 98/62 most times. Regarding your question about how much salt, water and potassium to take, I have no clue. I had the same question before starting Florinef, since I was already salt and fluid loading and taking a 20 meQ prescription potassium supplement. My Cardio didn't even mention anything about increasing any of those, I only learned about it from this Forum and Google, so I just increased salt and water as best I could since I'd already been doing so much. I really hope Florinef helps you! Good luck!

Salt, magnesium and vitamin D.

You're welcome, everyone. I suspect my magnesium levels have been low for quite awhile, since I was on either Prilosec or Nexium 40mg for almost 5 years straight. I've spent the past 6+ months tweaking the type and dosage to find that which works best for me and it has really helped with so many of my symptoms. I highly encourage anyone who suspects they could be low to do their own research, talk to their doctor and maybe give it a try! Good luck!

I thought I'd share my experience with seeing a 3D IMAX movie this weekend, in case it might help others. It was opening night for a huge action/adventure movie, The Avengers, and the show was completely sold out. I have one of those crazy fan husbands, who bought tickets a week early and got in line for us 2 hours early and saved us great seats in what he says is the optimal viewing location in an IMAX theater. (let's just say he resembles Sheldon on "Big Bang Theory" more than I care to admit!). I only had to show up 15 min prior and go find him since I already had my ticket. Luckily for me, that means our seats were at the start of the upper section and had a railing I could put feet up on as needed and seats that reclined a bit. So, the previews started and I was immediately overwhelmed by how loud they were and how quickly they flashed between scenes, showing only action and building up with music. I began getting really dizzy and tachy from that stuff, plus the 3D, and it was like I could feel it in my whole body. I had to close my eyes and try to breathe until each one was over. I worried about how I'd get through the movie if it was going to be that bad. Previews are always worse, but the feeling did carry over into the movie, too. Then, I had an idea...I wasn't due to take my magnesium supplement for another hour or more, but I remembered how much I've noticed in the past that magnesium really helps me when I am overly noise-sensitive or tachycardic, so I took it early. Lo and behold, within less than 30 minutes, my symptoms were all gone and I was able to just enjoy the movie! It was a very loud and action-packed 3D movie, but it no longer bothered me physically. It truly was a GREAT movie, too, for those who are fans of the series! Gotta love that magnesium!!

That is great! Nice analogy. Maybe you should change your screen name into SalmonintoSalmondip? Heehee! No, really, though, you may have found the perfect profession for someone with POTS, since a lot of us tend to do better when constantly moving, instead of standing still. (those who can stand up) Waitressing, at least at a busy place, involves a lot of fast walking and not too much standing still in-between. I'll bet it will just get better the longer you do it, as your body will get more used to it. Yay!

Thanks, Ashelton. Since I only have Thermotabs, I tried one in my water just for kicks. Nasty...it didn't dissolve smoothly at all and tasted awful. I don't know if I can get tablets with just sodium chloride around here or even what the difference would be. I'll have to look into that. I also tried 6 shakes of table salt in a different glass of water and it did dissolve fine, but was too gross for me to drink. It reminded me of the colonoscopy prep solution I had to force down a couple of times, that is probably why my mind won't let me tolerate it. I'll stick to swallowing the tablets for now. I remember that someone on this forum made little salt shots and got it that way, that might not be as bad as sipping it. That is great that you got used to it and it works for you, though. Whatever works!

Ashelton, does the water taste different with the salt tab added? Also, does the tablet dissolve right away or kindof linger at the bottom of the bottle for quite awhile? I suppose I can try it, it just sounds gross. I also do not have GI trouble tolerating them. Once in a while, I will notice a small amount of acid reflux if taking them on an empty stomach. But, the interesting thing is that a few months ago, when I was experimenting with reducing my salt to see if it would make any difference, I had constant acid reflux and a very upset tummy. When I upped the salt again, it was gone...

Shoegal-sorry, I guess it is actually 1.25mg. I cut it in half at the scored line, then cut those halves in half. It isn't easy and the pills are a bit chalky, so sometimes they don't cut perfectly and I have to put little bits and slivers together in what appears to be the correct quarter-of-a-pill size when swallowing it.

5 mg is considered a low dose for 'normal' people who don't have trouble with meds. If you are like me and have to take pediatric sized dosages of meds, (and they are still perfectly effective) then it could be a high one to just start out with. That is great that your doctor suggested to start low and go up from there.

I used to take omeprazole, too and was worried because it reduces the amount of acid in your stomach and I thought that it might interfere with the proper absorption of my other meds, so I always took my other meds about 30-60 minutes before I took it, to give them time to break down and digest first. No doctor told me to do that, I just figured it was logical. If you start at a very low dosage, like 1/4 pill, it could be a good way to transition to Midodrine for minimal side effects. Many people on this forum have suggested that this has helped them, myself included. I found that the side effects were very low and manageable on the 1/4 pill dose and I am one who has major issues with many kinds of meds. ( also scared to try new ones). Good luck! P.s. sorry if this post is kinda scattered, I have been interrupted by my toddler so many times while trying to write it...

You're welcome! Here is another article I read about the 'pressor response' of drinking water, to complement the first article I posted: http://circ.ahajournals.org/content/101/5/504.full