has your POTS gotten worse over time?

[Nathalie]

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?

[Pistol]

Yes - and I am so sorry @Nathalie. I have hyperadrenergic POTS since 2009 and I have seen many times that it waxes and wanes. As soon as I find a med or treatment that works and am convinced that my troubles are over - I get either a flare or another symptom. Or else I start with the same symptoms again. - Having said that I want you to be aware that this is the nature of the beast: we cannot control what happens to us, we have to constantly be aware of our ever-changing symptoms. BUT - we can adjust to the symptoms as long as we do not try to push through them. I have found that when I get bad and rest and then slowly add targeted exercise I can get back to my "tolerable" state rather quickly. The problem is that when we become ill and have to push through that makes everything worse.  -- Yes - it is normal for dysautonomia to change throughout your life because our bodies change, as well as our circumstances. And we are just extremely sensitive to ANY change. --- I wish I had better news or a better experience to share but it is what it is. And - on the bright side - our symptoms do not always change to the worst, often we find periods of improvement! 

[StayAtHomeMom]

I am only 3 years in. I have hit the stable spot. That being said I wonder if I haven't actually had it much longer and it just go drastically worse when I hit 30. My oldest son gets tested in December so maybe it will provide some insight into that possibility.

I use metoprolol and the beta blocker makes a huge difference. I hope you continue to get good results from that. 

[Nathalie]

2 hours ago, Pistol said:

Yes - and I am so sorry @Nathalie. I have hyperadrenergic POTS since 2009 and I have seen many times that it waxes and wanes. As soon as I find a med or treatment that works and am convinced that my troubles are over - I get either a flare or another symptom.

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.

 

 

[Nathalie]

55 minutes ago, StayAtHomeMom said:

I am only 3 years in. I have hit the stable spot. That being said I wonder if I haven't actually had it much longer and it just go drastically worse when I hit 30. I use metoprolol and the beta blocker makes a huge difference. I hope you continue to get good results from that. 

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.

[Nathalie]

49 minutes ago, StayAtHomeMom said:

I am only 3 years in. I have hit the stable spot. That being said I wonder if I haven't actually had it much longer and it just go drastically worse when I hit 30. I use metoprolol and the beta blocker makes a huge difference. I hope you continue to get good results from that. 

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.

[StayAtHomeMom]

1 hour ago, Nathalie said:

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.

For me, I remember being like 12 and would get black spots when I would stand. Mom brought me to the doc and she dismissed it as dehydration. And then when I was 15 they taught me how to take my own pulse in health class. It was 98 after sitting in class for over 45 minutes. I dismissed it as being a smoker. (I started young). 

Now my oldest son is 15 and he has symptoms and signs. He gets tested in December so we shall see if it is possibly genetic. 

[bombsh3ll]

Mine started off pretty bad from the outset, which was extremely sudden, not gradual. It has got worse over time although this is not the case for everyone. I have EDS which weakens connective tissue as you age, however I am not entirely convinced my issues are due to lax veins as I have no varicose veins even after 3 term pregnancies, and surely that would have made for a more gradual onset. 

I cannot pick apart in my case whether a) the underlying pathology whatever that may be has got worse, b) I was fit before I got it so strong muscles and heart may have helped in the early stages until I became deconditioned from not being able to stand or c) medication that initially worked (licorice root caps for me) lost efficacy over time. I suspect it is a combination of factors. 

It does seem to be common for meds to poop out on us after being effective for a while. Florinef in particular (licorice root works similarly to expand blood volume) has been shown in studies to boost the blood volume initially but this is not sustained and it eventually goes back down to baseline. 

With beta blockers - or when you block any receptor - generally the body seeks to restore homeostasis, however screwed up that homeostasis is, and over time upregulates the blocked receptor (ie cardiac beta receptors) and produces more of the substance that activates them (noradrenaline/adrenaline). 

If you can be upright I would celebrate and build on that and not worry too much about heart rate. By being active you are avoiding deconditioning which in no way causes POTS but can definitely make it worse. 

If you have the option of going to a specialist centre to be tested for your specific type or cause of POTS I would do that as it may help enable better targeting of meds that can help you. 

B x

[peachychou123]

22 hours ago, Nathalie said:

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?

Like you, for the first few years, my HR would go up to 120 on standing. It left me dizzy and lightheaded and tired, but with enough hydration and salt loading I could manage it. My symptoms remained stable for 6 years.

However, after contracting 2/3 stomach/upper respiratory tract viruses in October, my symptoms have markedly worsened. The lightheadedness and dizziness is much more frequent, even when sitting. I have been experiencing frequent exhaustion and chest pain, still not sure if it's heart related or just bad reflux. My tachycardia has worsened considerably. I was at the emergency room a few days ago as my HR was 154 just sitting! It stayed at 127 at rest for a few hours and slowly came down, but it's still shooting up everytime I stand, and it's very unsettling. I have more palpitations and my vagus nerve feels much more irritable after eating, going to the bathroom etc, I feel incredibly weak. I am trying to be brave, but it's been a difficult past month for me emotionally and mentally, and the anxiety that came before being diagnosed 6 years ago has returned full force. I hadn't visited the ER since 2013 or early 2014 I think? Since October I've been maybe 10 times. I am really ashamed of it, but I have just felt so incredibly awful. 

I was wondering if you have noticed an increasing shortness of breath since your tachy worsened? Currently I am out of breath just walking from room to room. The doctor tried to assure me it was just from my rapid HR and the body trying to get more oxygen going round. But in the back of my mind, I'm always worried my pots 'flare' could be the sign of something more serious.

I recently had an echo, 24 hour holter, and a CT a few weeks ago. 

Being unable to differentiate between POTS flareups and something serious is the worst part of this illness for me. The thing is, I am not currently on any dysautonomia meds, so I'm still holding out hope that I will find something that works for me. From what I've seen a lot of people have relapses and then recover over a couple of weeks. Some people on the other hand tend to worsen. I am just hoping for the best at this point. I feel like my body's delicate balance has been quite traumatised from the viruses, emotional upsets and anxiety, radiation/scans, blood tests (I've had about 15 blood tests over the last 5 weeks...I know each vial is only a few ml, but when they're taking 5-7 vials at a time, 15 times over...that's quite a lot for a POTS patient). I was doing great for the past 6 months, so it does feel like a kick in the teeth. But I'm trying to adjust.

[Nathalie]

9 hours ago, peachychou123 said:

I was wondering if you have noticed an increasing shortness of breath since your tachy worsened? Currently I am out of breath just walking from room to room. The doctor tried to assure me it was just from my rapid HR and the body trying to get more oxygen going round. But in the back of my mind, I'm always worried my pots 'flare' could be the sign of something more serious.

Being unable to differentiate between POTS flareups and something serious is the worst part of this illness for me.

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???

 

[Nathalie]

16 hours ago, bombsh3ll said:

With beta blockers - or when you block any receptor - generally the body seeks to restore homeostasis, however screwed up that homeostasis is, and over time upregulates the blocked receptor (ie cardiac beta receptors) and produces more of the substance that activates them (noradrenaline/adrenaline).

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.

[StayAtHomeMom]

17 minutes ago, Nathalie said:

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.

In theory sedatives could. I see a lot of people with hyperPOTS take clonadine (sorry for the spelling). Personally a strong jolt of caffeine in the morning helps my brain. But even then my brain isn't what it used to be either. Some days are better than others though.

Some one mentioned wanting to try Ritalin and I have heard of some people swearing by that. I don't feel like the benefits I could gain would outweigh the probable side effects I would get so I just stick to what I have been doing. I am better than I was 3 years ago and that is what is important to me now. 

[Pistol]

7 hours ago, Nathalie said:

That suggests that beta blocker stop working over time? 

In my case it did, I tried several BB's and they either did not help or they did not work long enough. Carvelidol is what I have been taking for 5 years (increasing the dose slowly). Then we added Ditiazem (calcium channel blocker) and that helped for the vasoconstriction/cold hands and feet/ chills and tremors. I take the aximum dose of it. This combination has been the best treatment for tachy/PVC's/hypertension for me. --- You asked about what other meds help with hyperadrenergic - my specialist recommends SSRI or SNRI ( I am in Lexapro and my sister (also has hyperPOTS) is on Wellbutrin, she has made a great improvement on it!!! He also uses Modafinil but I could not afford that, so I take Ritalin and it helps with energy and brain fog. Other people take clonidine (I could not tolerate). --- I take other meds too but these are the ones most helpful for my hyperPOTS symptoms. But the best emergency treatment for me is IV fluids. I get them weekly at home and they help for everything POTS related. Just yesterday I woke up really bad and had to stay in bed si I called the nurse (normally she comes Thursdays) and dhe is coming today instead to hook me up. In about one hour of them - I run them over 8 hours - I will be up and "running"! I was not sure why I got bad yesterday but today I woke up with a cold - that'll do it! ---- These are pretty common meds for hyperPOTS, maybe you can discuss the options with your doc? Good luck - be well!!!