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