Nathalie

That suggests that beta blocker stop working over time? 😮 I was hoping that the beta blocker would not only help with the tachycardia but also keep any excess catecholamines under control, which in turn, might help my other POTS symptoms. One of the things I'm most grateful for is being alive at a time when these medications exist! Imagine having POTS 100 years ago..! Are there other medications that quiet the levels of cathecholamines in the body? Natural products even? One of my biggest issues (after the tachy and fainting), is how badly my head is affected in the weeks and months after a flare. Even without a flare, I've noticed my brain isn't what it used to be. Forgotten names, words, half sentences, unable to multitask very well, rely on post-it notes and to-do lists, poor short term memory, and just generally slower at processing information. It's maddening, because I'm not a stupid person 😉 I only became that way when the POTS first hit a few years ago.

I definitely felt winded at 150 for several hours the other day. I'm sure it was no different than spending hours at a time exercising hard enough to make my heart rate that high 😮 I started on a beta blocker the same day that started and it helped within 2 hours of taking it. A small dose keeps me between 80-100 bmp on standing for 24hrs at a time, which is great. Did the emergency room doc give you anything to make your extreme tachycardia better???

Thank you. I'm finding the propranolo is working well. I am pretty new to it, so fingers crossed. You reminded me that in looking back, about 3-4 years before I was hit with POTS full on, I remember occasionally having what felt like orthostatic hypotension. Whenever I would get up from lying down, I'd have to hold onto the wall and wait for my vision going black to pass. It did, but I remember asking my PCP once "who gets orthostatic hypotension at my age??" In hindsight, I know the answer now. It wasn't a BP drop for me, just a noticeable increase in my heart rate from the posture change.

Thank you. I'm finding the propranolo is working well. I am pretty new to it, so fingers crossed. You reminded me that in looking back, about 3-4 years before I was hit with POTS full on, I remember occasionally having what felt like orthostatic hypotension. During those times, whenever I would get up from lying down, I'd have to hold onto the wall and wait for my vision going black to pass. It did, but I remember asking my PCP once "who gets orthostatic hypotension at my age??" In hindsight, I know the answer now. It wasn't a BP drop for me, just a noticeable increase in my heart rate from the posture change.

Thank you so much for that insight Pistol. I feel like you hit several nails on the head...not pushing through, and the fact that our bodies are ever changing and so our symptoms can be expected to too. I appreciated the comment I quoted above, as that was exactly the same thing I thought too. To the point where I sometimes wondered if I still had POTS. I'd get the occassional tachycardia in the mornings, and still always had to deal with being cold and tired a lot, always having to pee, and brain fog that made post-it notes my new best friend, but on some level, because I wasn't hitting the floor every time I stood up anymore and was quite stable for 2 years...I thought this was as bad as it was going to get. I'm pretty sure I am in the hyperadrenergic boat too. For the past couple of years, I didn't try looking into a subset as I don't have any docs anywhere near me that know how to look into that. With this new flare though, I've been doing a lot more reading and wanting to find out if I have a particular subset, as I now understand that the subset can play a role in choosing the right medication to alleviate some symptoms. For hyperadrenergic, I believe it is beta blockers. And probably other meds as well. But this has been my starting point over the past 2 weeks.

Yes, I noticed it has cleared my head up too. At least it did yesterday! Today, not so much. But I've also come down with a head cold so I'm going to blame it on being sick today 😛 It is interesting to read that so many people have different experiences with different beta blockers!

I wonder if it is normal enough for some symptoms of POTS to get worse over time? When I was diagnosed a few years ago, I was tachy at about 120-130 on standing, and fainting whether I was sitting or standing. My symptoms were pretty bad. I was off work for almost 2 months, but slowly got better on medication. Namely, fludrocortisone. I've been pretty stable since then on the florinef, with only the more minor symptoms causing continuous day-to-day problems, like the brain fog, "overactive" bladder, headaches/migraines, and exercise intolerance. I very recently had a more major relapse, with near-fainting, lightheadedness on standing, and suddenly, my heart rate is up to 150 on standing, and 120 when sitting. And it won't slow down. So I started on a low dose of propranolol and I'm getting really good results. I'm quite happy with it actually. But, the excess tachycardia seems to be my new normal without the propranolol. I feel...a bit upset, scared even. I thought I hit the lowest of lows a few years ago when my world was turned upside down with the worse POTS symptoms I thought I would ever experience. I'm greatful that I am staying upright for the most part but I'm wondering "why now?" Why is my heart rate *now* climbing so high? I hate feeling like I have no crystal ball to tell me what my POTS will look like in 10, or 20 years from now. I had been hopeful that with being stable for so long, that things wouldn't get any worse. Is it normal enough for new issues to pop up as the years go on?

Thanks for the replies everyone ☺️ I will ask about trying metoprolol instead. As much as I dislike the tight chest that comes with propranolol, I have to admit, I like it. As a non-selective beta blocker, I find it helps with several of my POTS symptoms, especially the mental clouding and the polyuria. Both are great reliefs, but I've been especially stoked to find my head clears up quite a bit on propranolol. I worry that a cardioselective beta blocker like metoprolol will only help with the tachycardia and not the brain fog 😶. What have your experiences been?

Hey everyone...for those of you taking a beta blocker to control your tachycardia, which one are you taking? I had a significant relapse in symptoms recently, with a big increase in what I usually see for a fast heart rate, and I was started on a beta blocker called propranolol. I know that according to the literature, propranolol is known to work well. But it is definitely aggravating my lungs (asthma). Is anyone else taking a different beta blocker? I have to admit...I think the propranolol is also helping with the frequent voiding. I can't find anything written about it working for this but anecdotally, are your beta blockers helping your other POTS symptoms too?

Anyone taking florinef or other corticosteroids need to be super careful though -- "Licorice may increase the effects of corticosteroid medications". "Its main constituent, glycyrrhizic acid, mimics mineralocorticoids in its action (sodium reabsorbtion and potassium secretion). The extent of metabolic and acid–base derangement can occasionally be severe enough to cause serious complications". What this seems to suggest to me is that people are at an increased risk for developing low potassium from it -- and that can cause heart rhythm disturbances...especially if already on a corticosteroid.

You have to be careful with licorice root if you are on fludrocortisone. The bottles will actually say not to be used with corticosteroids. Do your research first. I was advised by a naturopath to try an adrenal support formula but after looking into it, I decided against it and was disappointed that this naturopath didn't know about mixing fludrocortisone (florinef) with an adrenal support formula that contained licorice root.

Has any one tried a tilt table test while on florinef? Do they make people come off it before hand? Also, what is everyone's take on the diagnostic criteria for POTS? Should a heart rate be at least 30 bpm above resting *for at least 10 minutes* for someone to say you have POTS? Anyone have any tilt table test results that can weigh in on it? I'm not asking for myself but rather out of curiosity. I know that for myself, while I do pretty good on florinef, I have days when I have a 60 bpm increase above resting. And over the course of 5 minutes, it will go up and down a little bit but always goes back up to the 120's, despite the short lived dips. I ask because I wonder how fickle some specialists can be about telling people they don't meet the criteria...as I've read stories on here and find them crazy infuriating that people get dismissed without even being seen by specialists.

Ooh!! Good question!! I have been wondering the same thing over the past 2 days. I just found out there are 3 Mayo Clinic sites in the US. I was thinking about maybe trying Arizona myself...

I personally think you can do better. You deserve better. Find a new neurologist. Or try the Mayo Clinic. The best thing anyone can do for themselves is to be their own best advocate. Don't take "no" for an answer. What I don't understand is...is a person's heart rate supposed to stay above 30 BPM above resting or above 120 BPM for over 10 minutes to qualify for a POTS diagnosis?? I've never interpreted any of the diagnostic criteria that way -- any one else??

Yeesh...it really bothers me when doctors call things they can't explain anxiety.... Like you, when I was in the hospital the same day I was diagnosed with POTS, even the smallest movements would make my heart race too. Ask for a tilt table test...easiest way to find out if you have POTS. And I hope you get to see a cardiologist soon. Good on your primary care physician for the referral. POTS is still not well known and even lesser understood...don't give up! Make sure you keep advocating for yourself and if need be, call around to cardiologists or neurologists in your area and ask each one if they are familiar with POTS. Talk to the receptionists and ask them to ask the doctor if they treat POTS. Have them call you back with the answer. When you find one, have your primary care provider make a referral to that person. If there is no one in your immediate area, broaden your geographical perimeter a bit more. The Mayo Clinic and Vanderbuilt University's Autonomic Clinic are also really good choices. That being said, fingers crossed that the cardiologist you'll be seeing (the one your doctor referred you to) will be able to help

Hey there It's not exactly clear what kind of information you are looking for, but Vanderbuilt University seems to me to be one of the world leaders in understanding and doing research on POTS. Here is their website for POTS: https://ww2.mc.vanderbilt.edu/adc/38847

Yep, me too Orion. Just this morning, I was watching my heart rate spend 98% of the time in the 120's with the short lived dips down to 110 or 115. But it always went back up. This was while I was standing still. I also found that if I walked around, my heart rate would drop to high 90's -105 bpm, but if I stood still again, it would climb back to 120-130. I thought that was weird. Anyone else? It sort of makes sense, I suppose. When we walk, our calf muscles contract and blood gets re-distributed. Without that, the blood pools in our lower legs and cause our heart rates to climb?? I've read that our calf muscles are sometimes called our "second heart", due to that very fact that it sends blood back up from our lower legs.

When I was diagnosed with POTS in the emergency room, my resting heart rate (laying down) was 55 bpm! Hard to believe considering it was about 130 on standing. I was fainting before it could get any higher, so who knows what a true tilt table test would have shown for max heart rate, but nonetheless, it's not important how high a person's heart rate goes...as long as it is over 30 bpm over resting or above 120 bpm. I personally think a poor man's tilt table test is just as reliable an indicator as using a true tilt table. There is nothing much different about the two, that I can tell. Does any one know differently? I just bought a FitBit a few weeks ago to keep an easy eye on my heart rate. My heart rate has been (fortunately) boringly normal (woot woot!)....up until this morning. Glad to have the fit bit. Was an easy way to keep on eye on what my heart was doing without having to hold my fingers to my neck to feel a pulse as I stood still, or moved, around the house. This isn't to say I would endorse buying one...I feel it is perhaps a bit limited in what it can do. Whenever I felt a palpitation, it seemed to lose track of my heart rate for about 10 seconds. However...for the first time in a year, (have kept pretty stable on florinef, with the odd tachycardia here and there), I woke up this morning feeling "off". I instinctively sort of knew it was because my heart rate was probably fast, and sure enough, I was about 90 bpm while just sitting still watching tv. Upon standing (still), I was at a steady 120-125 bpm for at least 5 minutes straight. That's about 60 bpm over my typical resting (laying down) rate, so that's quite a change. It really caught me off guard though...after a year of being so much better than the way I was a year ago when I was fainting every time I stood (aka- before florinef), I had thought those days may have been behind me . Lasted for an hour or two and then I got busy and stopped paying attention. Odd, but there we go -- I guess POTS can come and go, no matter how much time between episodes.

1. I don't know if I would worry about a watch that monitors blood pressure and oxygen levels. I know there are people out there who have low blood pressure and POTS...probably lots, but interestingly enough, the criteria used to diagnose POTS doesn't include low blood pressure upon standing. Vanderbuilt Autonomic Dysfunction Center: Diagnostic Criteria for POTS: POTS is defined as a sustained heart rate increment of >30 beats/minute within 10 min of standing or head-up tilt in the absence of orthostatic hypotension (the blood pressure does not drop by more than 20/10 mmHg). 2. The poor-man's tilt table test can be done at home. About the easiest way to tell test your heart rate in the absence of a tilt-table test, is to lie down on your bed for 5-10 or maybe even 20 minutes and then check your resting heart rate. Then stand up and check your heart rate while simply standing still for a few minutes. There should be at least a 30 beat per minute increase for a POTS diagnosis. If you can't find your pulse by feeling your wrist or side of your neck, there are watches out there that will track your heart rate for you. I have a FitBit Alta HR that does okay. The watch piece turns off after a second, which is unhelpful (unless I want to sneak a quick look at what my heart rate is then and there), but the APP for your phone gives you a second to second live stream view of your heart rate. So as long as your phone is on, you can watch what your heart rate is doing on the screen. (Assuming a normal sinus rhythm, of course). From what I've read online from people, it is not likely to be useful for arrythmia monitoring. Hope that helps.

Has anyone here tried medications called vesicare or oxybutynin to calm the bladder? I don't know if it would help in the least, but trying to explore some ideas.

Funny you say that Lily....just this morning I started adding salt to my club soda/juice that I drink throughout the day...and I've been holding on to my fluids SO much better. My tongue is no longer dry as a bone and my trips to the bathroom have been cut drastically...I think I can count 5 trips today, whereas, yesterday and every other day it would have been 15 by days' end. Amazing. My systolic blood pressure at day's end wasn't even affected...it was 118! I think the big question to research though...is how much salt to add to my drinks every day? I've been very liberal with adding it to food since being diagnosed with POTS a year ago, but evidently, that's not enough. If I add a few tsp a day to my drinking water too -- hopefully I'm not going overboard! I feel better though

I just stumbled across this product on the dinet website, under 'Information Resources'. I looked it over, read what people had to say in the testimony section, and then bought a few of these drink packets online through their website. I have to say...I am excited to try these. It looks like a great ratio of sodium to potassium, with VERY LITTLE sugar. As I read, I realized that I had completely forgotten that drinking plain water wasn't going to get me very far in the constant challenge people with POTS have in keeping hydrated. It is one of my toughest challenges, and perhaps this is why I am a forever in the washroom voiding out everything I drink almost instantly. And then the cycle of dehydration begins all over again. Every hour, every day. I had forgotten that electrolytes will play an important role in keeping fluid in the system. Has anyone else tried this product? Anyone have any thoughts on it? My only question is about the super high levels of B vitamins in it. Anyone turn yellow/orange? I know when I supplemented with b vitamins awhile back, I had to cut back the strength of the vitamin I was taking because I turned orange At any rate, I think I will end up being very grateful to this company for making this product. Can't wait to try it!

It was my first significant symptom too, Haugr. I had had very sporatic episodes of light-headedness with standing for about 10 years before anything else developed. The light-headedness I completely ignored as a somewhat normal thing that happens to people now and again with position changes...but then the peeing hit. That was a huge thing. I think it was cold, fatigue, and frequent peeing for a few years before the POTS hit full on.

Hi Big Guy Nice to meet you. Like you, I was diagnosed a year ago. I was off work at first for about 1 1/2 months, then managed to get back to work after starting florinef. But it truly took me several months to feel capable again. I've been pretty good since then...although, I still recognize I have deficits that were not there before -- mostly with cognitive processing and "data retrieval", if you will. I used to be an extraordinary multi-tasker...now I have to write myself stick-it notes and think twice as hard about coordinating the finer details of my job. I fervently pray that this doesn't get any worse, but when I'm tired or try weaning down off florinef, it does get worse. Solution? I make 8 hours of sleep on work nights a priority and I don't make excuses for sleeping in on weekends. I need it to refresh after a week at work. It's harder than it used to be... fatigue is constant. I worry that early alzheimer's is in my future...but I also know that cognitive difficulties are a part of this condition.

I appreciate exactly what you're saying, Kimin. I think that is exactly what this doctor is trying to do. See if the POTS is temporary. The point of contention with my "specialist" is his concern over any long term use of corticosteroids and their possible side effects. I agree with my specialist on the point of trying to avoid any unnecessary side effects if I can come off the florinef in between flare ups. But that has not been my luck. My body has been reeling for 3 weeks now since quitting the weaning process and going back up to a dose I used to be able to work with to some degree. I haven't gotten my equilibrium back yet. My body is a bit of a mess. I know when I first got diagnosed with POTS, it took 3 months to get back to my life after starting florinef. I slowly got stronger and better able to live my life as the weeks passed. I hope this is the same. It is amazing the power doctors have to make people feel like failures or silly for not being able to do as they're directed. Even when we know they just don't get it