Wendy C.

No swelling at all, not even during my pregnancy. Salt and fluid loading doesn't make me swell either.

Congrats on the remission and being able to work! I agree with Jangle about stress and exercise. (not enough experience with vit. D to comment) I would also add, based on my experience: -even though you are feeling better, be careful not to overdo it physically or with your diet or alcohol, etc -get together regularly with your positive friends or family and try to laugh a lot -don't dwell on it, if you worry too much that your symptoms will come back, they probably will...have you heard the phrase, "What you think about, you bring about?" -don't schedule any surgeries/medical procedures unless they are absolutely necessary (I suspect one that I had last Fall made me relapse) Enjoy this time!

I've noticed that sometimes, too. Distraction helps, because then you don't focus on your breathing as much and get yourself into a panic about it. Maybe a good book or tv show to take your mind off of it? Otherwise, I noticed that I do this thing where I take a deep breath through my mouth, hold it for maybe 2-3 seconds and exhale slowly. I didn't realize I did that until my tilt table test when they asked me to stop because it was my body fighting off a faint, but it was hard to stop it. I have tried Vinyasa Yoga breathing during times of shallow breathing, but I think it makes me focus on my breathing too much and might not actually be as helpful as something that distracts and takes your mind off of it.

Yes!!! (said quietly) It has gotten worse since I began Midodrine, too. I notice it when reading or singing to my toddler-it can be exhausting. It isn't happening the entire day though, because sometimes I can sing with no problem.

Thanks for the great website, McBlonde! I read all of the articles related to magnesium and they were helpful. I have been experimenting with reducing my magnesium supplementation this week and while it did eliminate my diarrhea, it caused a noticeable increase in my PVC's and tachycardia. I'll be mentioning this to my Cardiologist on Friday.

lgail, yes, I haven't had any positive tests, but I notice that I don't feel sick/POTSy after eating gluten-free muffins or cookies, but I do if I eat regular ones...I'm not sure yet, still experimenting, but it also seems to be easier for me to stand up after a small GF meal than a regular one. So, I am certainly going on a gluten-reduced diet to start.

Interesting. I wonder why the celery works? The apple makes sense. My fix is Kit Kats, 2-3 of the snack sized bars. (for those not in the U.S., they are a type of candy bar, a thin wafer covered in chocolate). I asked my cardiologist and she suspects they give me a small blood pressure boost. I've been eating them every day since my relapse in Sept. 2011-often 2-3 times daily. They really help me first thing in the morning. So far, I've been able to get away with it calorie-wise. Probably because I only eat a small quantity of food throughout the day.

I am also on Midodrine for the first time for the past 12 days. I am only taking 1/4 of a 5mg pill, twice per day. The first 3 days, while only taking it one time in the morning, I felt great. I could really feel a difference in my lower legs, less pooling I assume. The 4th day it didn't seem to help at all, but the next 2 days it did. I have no idea why. The doc and I decided to try taking a second dose and it seems to help. I've noticed it is better for me to wait about 2 hours each morning before taking my first dose so I don't feel so wired. The other side effects for me are that it is much easier to stand, but harder to kneel or squat on the floor in the mornings, more frequent urination (didn't think that was possible-just drinking more liquids to compensate) and very cold hands for a few minutes off and on throughout the day. Running my hands under hot water gets rid of it for awhile. Since none of those things are very bad, I will keep on using it. It makes showering, drying my hair, laundry and other things easier to do-Yay!

I didn't get any, but I only gained 22 pounds because I was so sick the entire time. We didn't know about POTS yet. I literally only felt good during the final week before I was induced, week 39. I didn't swell a bit, either - wore my rings the whole time. Maybe that final week I retained a little water and salt and that is why I actually felt good?

If I eat white flour products or caffeine, it affects me while still sitting. (pre-syncope symptoms of fogginess, overheating, tachycardia, sweating, etc). Volume of food affects me while standing, making me weaker and I get those headaches that start in the back of head/neck and travel in a rams' horn shape towards my forehead.

Yes, absolutely! I don't notice it as much when out running errands or at appointments, but I definitely notice it around the house. I have a 16-month old and two huge dogs, so it is always, up-down-up-down all day. I have taken a cue from my son and sometimes crawl from one side of the room to the other, for example to let a dog in or out, answer the phone, etc. It is easier than having all of those POTS-y feelings from getting up for just a couple of minutes. Of course, you can't do that while out in public...

Like Lemons said, anything with white flour, like breads/pasta or even rice does it. If I have anything more than a medium-sized meal, it happens - so that goes along with your volume theory. I am starting to wonder about meals with too much salt causing it, too, like the soup I had tonight and the one a couple of nights ago. I thought that they'd be good for me, since I am taking salt tablets, but they actually made me feel worse. Since I've only noticed the soup thing this week, I can't be certain yet. I did begin Midodrine one week ago, so perhaps that has something to do with it, since soups didn't bother me previously. Also, this past Fall, I couldn't handle more than a few bites of meat, but that has gone away in the past few weeks, luckily. One thing that is certain, if I stand up for more than a minute or two after a meal, I will get a killer headache that lasts for 6-10 hours, regardless of what type of food it was.

I was keeping a daily journal for 4 months of how many ounces I drank and how many times I urinated, plus any medications or changes in habits - to see if I could detect a pattern that was causing the good versus bad days. Several times, I thought I had found something, only to find out it was a fluke. I went through waves, where for several weeks I'd drink around 64oz per day, then another wave where it'd be around 95oz, and yet another where it'd be closer to 130. None of the 3 amounts seeemed to be better for me than the other... Like Rama said, I do recall when I was pregnant that a nurse also told me to keep my pee clear, but that was before I knew about POTS so I don't know if that advice was just for 'normal' people, or if it applies to us as well? Now, I just drink when I am thirsty (water or Gatorade) or if I notice that I haven't had anything to drink for 30-45 minutes, then I will take 3-4 sips just to maintain, even if I'm not thirsty.

Interesting...Perhaps your husband has a caretaker tendency and feels 'good' about himself while he is helping out? Not that he is consciously doing that, it just happens. I am a 'caretaker,' too! I have heard before that people volunteer or give to charity for the good feelings it gives them. I can't recall if I heard it was that endorphins were released or what it was. I don't know if it is true or not, just a theory. That is nice that he is so good to you, though. My husband is so-so about it. His standard response is "Well, go lay down then" - which isn't always practical when things need to get done.

Hmmnn...I have noticed a slightly improved feeling from using saline nasal spray to combat a dry nose - before I even knew what POTS was. More of the sublingual theory? Rama, thanks for mentioning the stuff about being able to see your veins while on saline. I have been noticing differences in the veins on the tops of my hands that do correlate to how hydrated I am each day. Today, I had my first tiny dose of Midodrine and my veins looked full and plump for a few hours. I remember noticing plump/chunky veins on my hands last summer and thinking, "oh no - am I getting old lady hands already?", but now I wonder if I was just nicely hydrated back then, as opposed to the flat veins I have most of the time now. I also get the comments about my veins collapsing easily and phlebotomists always saying I am dehydrated.

I have this happen, too. I typically fall asleep at about 11pm, sleep deeply until around 5:30am, then wake up overheated, breathless, with tachycardia, and scared, as if from a nightmare, or how you feel when someone peeks from around a corner and says "BOO" to you. Is that adrenaline, you're all saying? After a few minutes, my immediate symptoms go away, but I don't usually fall back to sleep for at least an hour. (Luckily, my baby lets me sleep until about 8am on most days!) Sometimes, during that time when I am trying to fall back to sleep, if my husband moves his arm, rolls over, or makes any kind of tiny sound - I get startled as badly as if he had surprised me around a corner. Then it all starts over as I try to calm down and fall back to sleep. Also, I might be passing out during those times on some really bad days, since it seems like a state of semi-consciousness occurs that feels different than just falling asleep and awaking. I'm not sure... I do wonder if it has to do with salt and fluids being stopped as I go sleep, and by 5:30am my body is just desperate for those things and freaks out. I know that during the day, I have to take my salt tablets about every 6-7 hours to supress symptoms, so that could explain it. I am going to try and take my salt tablets immediately before bed instead of an hour earlier to see if it helps me get to 6:30am or not. A bit of an experiment. Problem is, my husband's alarm goes off at 5:30am, but I'll try it anyway! I do keep Gatorade, water and salt tabs at my bedside, but I am usually too out of it during that startled awakening/going back to sleep time to even be able to sit up and drink.

I have that happen, too. I will feel hot and think I am coming down with a virus and getting a fever, so I'll check my temperature. It will be around 95-96 degrees maximum and others will say that my forehead feels cool. I've checked my temp on days when I am feeling good and it is still in the 95-96 range. The feeling-like-I-have-a-fever-hot is different than the overheated/flushed-hot though. Strange...

Mine feel tingly, heavy, uncomfortable and I can feel 'movement' in them.