Nathalie

Why do we potsies pee SoOoOooooooOOOOOoooo much??? I've been experiencing a flare up for the past week and I'm just so tired of being married to my bathroom. Everything I drink goes through my kidneys in 15-20 minutes. I must go 3 times in 1 hour while trying to fall asleep at night. (The thirst is almost just as annoying.) Even without the flare, it's still frustratingly frequent...just not quite as bad. Any suggestions? Anything besides licking the inside of a salt shaker work? This whole week or two, I've had to plan my life around proximity to a bathroom

I agree... Unfortunately, the specialist I have is not familiar with the symptoms of POTS aside from the diagnostic criteria. I think a lot of people are in the same boat, given that it is not a well known or understood condition.

Nope. It was never high.

I know that when I was first diagnosed and started on florinef, it took pretty much 3 months to get back to a place where I could function well at work again. (I was initially off work for 6 weeks, and then it took another 6 weeks to feel "okay" again). I gradually increased my dose of florinef until I felt stable and relatively well. I was first started on 0.05mg ( 1/2 tablet) and ended up on 0.2mg (2 tablets) a day. Fortunately, this is the only medication I've needed...but that doesn't work for everyone. The tricky part is discovering what will work well for you and at what dose. And it can take time. It took time for me. And I still have my good and bad days.

I'm glad you found a good doctor. They are worth their weight in gold. Mine gave me florinef and that was that. Said there was no point in investigating for anything and is not familiar with POTS symptoms -- only the criteria for diagnosis.

Thanks for weighing in on that Yogini. That makes so much sense - exactly what I needed to be reminded of, actually. So thank you It's been frustrating to work with a specialist who feels everything comes down to "how my heart rate and blood pressure are". I keep having to remind this person that POTS does not affect your blood pressure - but it goes in one ear and out the other. So its been challenging trying to navigate this condition by myself.

SoOoOoOo..... my main specialist (the one who diagnosed my POTS) wants to see me wean off the florinef he prescribed me. He wants to see if I could successfully wean off without relapsing. As one can imagine, the whole idea was less than thrilling. But I've been diligently forging ahead over the past 6 months...or at least, I was, until about 2 weeks ago. I had to call it quits and go back up a bit about 2 weeks ago. It got to the point where I was so cold (teeth chattering) and so tired (falling asleep right after getting home from work) every day...that I just couldn't take it any more. Not to say the hypoglycemia, brain fog, lightheadedness, palpitations, and daytime fatigue weren't also very difficult on me -- because it was. Very. Difficult. (Oh, and let's not forget about the twice hourly bathroom breaks because everything I drink goes right through me. (Anyone else?).) So now I'm left with this dilemma. Can it be done? And if so, how long should I expect it will take for my body to adapt between dose changes? I've been giving it one month between dose changes, and with each decrease, it's been minute amounts shaved off. In 6 months, I didn't even manage to wean down from 2 tablets (0.2mg) to 1 1/2 tablets. Again, this is one of those things people aren't talking much about on the web. It's hard to know if any one is having any success at weaning. It would be good to hear from others and their experience with weaning off florinef. Nathalie

Hey everyone I was diagnosed with POTS a little over one year ago and have been on florinef ever since with really good results. It took about 3 months to stabilize on florinef and I went from fainting every time I stood up for more than a minute with a heart rate between 120-130 bpm, to a now normal heart rate with resting, walking, and activity. That being said, I still feel like I suffer from a lot of things that only came about with the POTS, such as brain fog, chronic fatigue, constant and never ending trips to the bathroom to pee, exercise-intolerance, and an arrhythmia that comes and goes. I'm wondering how many other people out there, who have stabilized on their medication (as in, do not have tachycardia anymore because their meds are working for them) are still experiencing other symptoms known to occur with POTS? For the most part, the only stories I can find out there are from people who are still really suffering from their POTS...and so I'm curious to hear from those who are doing well but still seemingly have other symptoms known to go with POTS. I guess I'd like to hear from others because 1. POTS is still relatively a mystery to most doctors, and I can't ask them..., 2. part of me wants to know if my doctor got the diagnosis right. Should I still be having any symptoms if my heart rate has simmered down? Nathalie