aelizabeth3300

This happens to me ALL THE TIME. I actually found that ignoring it and lessening my anxiety surrounding my symptoms has caused this to be less frequent. The more I think about it and pay attention to it, the more often it happens. I wish I had easier advice though, because worrying about symptoms turns into an ugly cycle.

I'm terrified to exercise with my heart rate and exercise intolerance as they are right now. Light cardio gets my heart rate above 200 easily even on a beta blocker. My muscles have also been losing strength at an alarming rate despite regular activity. I don't know what to do. :(

It's really hard for me to explain what mine feel like when I'm not experiencing them. I feel it all in my chest though. It feels like a rush of... everything to my chest. My heart pounds and races, typically 150-200bpm. I get lightheaded most of the time. Shaky. It feels terrible. 

I mostly stabilized on medication, so I can still work and go to school. I'm still not fully functional, though, and I have to have a job I'm able to sit. It's really hard finding a place like that when you're 19, in college, with hardly any work experience besides minimum wage positions. 

I think I read somewhere that beta blockers also reduce magnesium in your body. Could be mistaken, though.

My heart rate was frequently getting between 140 and 200bpm off medication. I have bounced around many different beta blockers that all seem to do the job. I've responded well to beta blockers alone and high fluid intake. I started on a high dose of Metoprolol, but since I'm only 85lbs I had bad side effects on that due to lowering blood pressure and bradycardia. My cardiologist switched me to low dose Propranolol and I was doing well on that, but I have an AV block as well. I went to see an electrophysiologist for the AV block and he wanted me on ivabradine, but we couldn't get it through my insurance (darn American health care) so he switched me to Bystolic (nebivolol) because it's newer and cardioselective. I haven't had a severe attack since starting beta blockers.

@joshrandall I was just diagnosed this year with IST related to dysautonomia, atrial tachycardia, and an AV block. My parents are very very invalidating as well. Even with treatment, my conditions are pretty debilitating at the moment, and they're annoyed that I say it's hard to find energy to do chores after school and two jobs. My mental health is suffering, too. I understand completely. This community will validate you and sympathize, and I'm forever grateful for finding this community. They've been so helpful. I recently reached out to a counselor to seek treatment for my mental health, though, and just that step has made me feel a little better. I hope you find what you need to help yourself.

@bombsh3ll I want to do my catecholemines. After my dysautonomia diagnosis, they quickly observed another heart condition, and that has been my focus. So far I have only been put on beta blockers as treatment. My main symptoms come from a high HR, so this has been working quite well. Since I'm very small, tiny doses work well with me and I'm able to avoid most side effects. 

@Pistol That's strange that mine came back severely abnormal then because I felt relatively asymptomatic during testing as well.

I actually had what my doctor called an Autonomic Nervous System test, and it somehow tested all of my autonomic nervous system responses in one test. I was on a finger heart monitor, a blood pressure cuff, and had my bare feet resting on some other device that I couldn't recognize (and didn't ask). They monitored me resting, standing, valsalva, holding my breath, etc. Found that my general nervous system condition was borderline abnormal and that I have hyperandrenergic dysautonomia. I want to get my catecholamines tested out of curiosity because my adrenaline storms seem to get really severe off meds. 

But I've never heard anyone else on here speak of the ANS test and I was wondering if anyone else had been diagnosed that way.

@Pistol Increasing my BB dosage is not an option. Like I said, I'm not supposed to be taking BBs because of an AV block. 

From what I understand, beta blockers may have be either cardioselective or not AND vasodilative or not. Basically, any combination of the two. Bystolic, however, is vasodilative so it should lower your blood pressure. Cardioselective just determines which kind of B receptors it blocks, B1 or B2. Both cardioselective and non-cardioselective should lower the HR, just in different ways. Which one works best for you depends on what's causing your fast HR. I can't explain why Bystolic doesn't lower your blood pressure, though. 

@JimL Thank you so much for sharing that link. It's actually very helpful!

@p8d @bombsh3ll Yes, I'm on beta blockers, but they don't help much with exercise tachycardia. My resting rate is much better, but the exercise intolerance is still pretty severe. I've noticed a significant decline in my tolerance over the last few years despite periods of exercise. However, I'm not really supposed to be on beta blockers because I also have an AV block (aka heart block). 

Hello everyone,

This is my second post in this forum. My question is geared more towards those who have an exercise intolerance not with syncope, but with tendency for an extremely high heart rate upon exercise.

I've always been an active kid, but a couple years ago (way before my diagnosis or any other severe symptoms), I noticed my HR gets extremely high with minimal exercise. I could jog for like 3 minutes and it would get to 200. I realize now that this is why cardio was alway increasingly difficult for me. Since my diagnosis, I've been really busy (and also nervous) to start exercising again, but I know I NEED to.

My question is, how did you guys start exercising? What exercises did you do to tolerate the high heart rate? Did it eventually get better? How long did it take? Questions like that, I really need advice on this topic.

Oh, I could go on and on about the dumb things my doctors have said/did to me. Before I was diagnosed, my first cardiologist did an EKG, gave me holter monitor, and scheduled me for an echo and a stress test in my first visit. She explained that due to my age, my symptoms didn't worry her (I was 18 at the time). While I was on the monitor, I ended up in the ER with very bad symptoms. I was there laying down on the bed, chilling on my phone, and my HR spiked to 200 in a matter of seconds and stubbornly refused to come down.  The ER doctors prescribed me 25mg of Metoprolol (I weigh 80lbs with clothes on), and she agreed to the prescription. Well, obviously I was having severe side effects on it considering how high of a dose that was, and when I called her about it the only thing she said was, "I didn't prescribe this so she can come off of it." Uhhhhh? You're a cardiologist recommending me to suddenly stop a beta blocker? After I was in the ER with a HR of 200? You want me to stop medication? 

When I went back, we did the stress test and the echo. While hooked up to the stress test monitor, I stood up off the table and my HR increased from 90 to 130, and she told me to relax. She then said, "Someone your age can handle higher heart rates. Your heart is stronger. I believe it's just anxiety. We'll review the monitor results when they come back, but I think there's nothing to worry about."

I never went back. Immediately got a second opinion. He spoke to me for 5 minutes, did no tests, and gave me the dysautonomia preliminary diagnosis. Confirmed it with an ANS test. Prescribed me a low dose of Propranolol, and told me all the lifestyle changes and whatnot. 

I've never struggled with anxiety (until these symptoms started), but even so I know what it feels like to be anxious and have a panic attack. Not to mention, panic attacks usually only increase the HR to about 160 max and mine was 200. 

After all that, they discovered an AV block on my monitor, so I was referred to an electrophysiologist. I've been struggling with him for two whole months now. I can't be on a beta blocker and he wanted me to try ivabradine (corlanor), but since it's only approved for heart failure in the US, he has to convince my insurance company to cover it. He's taking his sweeeeet old time to do that. Meanwhile, I can't be off medication or I get severe adrenaline storms, and have been taking beta blockers. Which make an AV block worse. SMH.

I was recently diagnosed with hyperadrenergic POTS myself. I just turned 19, and my HR spikes like that when I stand as well, but I don't usually feel like I'm going to pass out unless I've been lazing in my bed for a long time without eating or hydrating. I also get adrenaline spikes where my HR gets up to 200 for no reason. My doctor is an expert in POTS, and he diagnosed me with an ANS test. Otherwise, I'm not really symptomatic with my POTS, either.

1 hour ago, jklass44 said:

If the beta blocker isn’t working for you, or if you shouldn’t be on it because of your AV block, I would suggest at least trying the Ivabradine. It may work well for you! And as far as I know, I don’t think there are any drugs approved for treating POTS... 

As for your bradycardia at night, maybe just a small dose in the morning only will be beneficial? But of course talk with your doctor about dosages!

I'm not sure about drugs approved for POTS, but ivabradine is only approved for heart failure in the US right now, so it's difficult to get insurance approval here. I am going to give it a shot, just the idea worries me. 

Since you have the hypo-POTS, I was wondering a few things about your symptoms. When you start feeling ill, what symptoms do you experience? Does salt intake and water help when the symptoms start? I've noticed that a quick (key-word quick) shower and laying down usually helps me feel better, but those only work for when I'm home. Sitting doesn't necessarily give me relief from my symptoms, and I was wondering ways I can relieve symptoms when I'm at work or school. I don't want to have to quit my job or school to be able to manage my symptoms, but when I get the adrenaline storms, I'm completely debilitated. My HR skyrockets to like 150+ when they hit. It gets super bad. Have you notived anything that prevents/stops these attacks other than meds?

32 minutes ago, Derek1987 said:

What is an AV block and what's the purpose? I'm suffering from an adrenaline storm now. It's a daily thing now. The suffering is real.

Atrioventricular block. It is a condition where some electrical impulses don't pass through from the atria into the ventricles. Beta blockers affect the AV node (they affect the whole heart), so beta blockers can worsen that condition. 

Just now, jklass44 said:

Welcome to the forum, I’m sorry to hear about your symptoms! I have hyperPOTS as well and was first tried on I think 6 different beta-blockers. I had drastic side effects on all of them, but I don’t have AV block that I know of. 

Ive been on Ivabradine since late summer of last year. I started off with 2.5mg twice a day, went up to 5mg which had my HR in the 40s consistently and I felt like crap, so dropped down to 3.75mg and I feel much better. My resting HR is pretty much normal now, however I do still have to limit myself when it comes to activities otherwise it will jump up to 120-180 (depending on the activity and how long I’ve been upright, so this is at least something I can control). The only symptom I’ve had being on this medication is the weird halo affect around lights, but it only happens at night time so it’s not a huge deal for me. And Ivabradine does nothing for BP though so I take Clonidine for that. 

How long ago were you prescribed Ivabradine? Have you started it yet?

I was prescribed about 3 weeks ago, but since it's not approved for treating POTS in the US, my doctors have to jump through hoops to get it approved through my insurance. However, both my pharmacy and my doctor are being absolutely awful about this - not returning my phone calls and not communicating with each other - so I haven't even been able to fill my prescription. I stopped taking my beta blockers initially, but I ended up in the ER last Tuesday with a HR of 150+ and what felt like trembling in my chest. After that, I restarted the beta blockers just to keep my HR down. 

The main thing I'm worried about is apparently my HR when I sleep gets down to 30s, and I worry the ivabradine will make it worse, potentially dangerous.

What are the symptoms you have with your POTS? I'm really tiny, and regular doses of beta blockers screw with my BP really badly, too. Initially, they were going to just lower the dosage, but they found I also have an AV block, so beta blockers are no longer an option. If your main issue is the fast heart rate, my doctor prescribed ivabradine. It lowers your heart rate and doesn't affect your BP much. 

The beta blocker propranolol mostly worked for me. It didn't completely stop the surges, but it made them less frequent and less severe when I had them. Unfortunately now I can't take beta blockers as I have an AV block. They prescribed ivabradine. I haven't started taking it yet. 

I have hyper pots as well. I was diagnosed last month officially. When I get the adrenaline storms, my heart rate gets as high as 200, and stubbornly won't come down. The first time this happened, they gave me beta blockers. They prescribed way too high of a dose for my size, and I got all kinds of crappy side effects. After being diagnosed, they prescribed a different beta blocker at a much lower dose. I was stable on this for a while. My adrenaline storms were shorter lived and my heart rate didn't get as high. Unfortunately, later in the month, I was also diagnosed with an AV block. Now, I can't take beta blockers to manage my symptoms. They prescribed ivabradine to keep my heart rate down, but it does nothing for blocking adrenaline specifically. It's not approved for pots treatment in the US, though, so I haven't been able to get it filled yet. It's been three weeks without medication, and I've already had one severe adrenaline storm that put me in the ER. 

Hi, everybody. I'm new to this forum and this is my first post. I was recently diagnosed with hyper-POTS. I have been slowly getting worse since my diagnosis, and it's making me nervous. I'm not getting much support from my doctors, and the people around me don't know how to help, so I wanted to speak to others that have this form of POTS. I was originally prescribed propranolol (a beta blocker) to keep my adrenaline storms in check, but they found I also have a second degree AV block (type I) and that beta blockers can worsen that. They prescribed me Ivabradine instead, and the warnings have me worried. I wanted to know if anyone on here has taken Ivabradine for this form of POTS. How did it work for you? What were the side effects like? Did it decrease your heart rate drastically? 

Also, if anyone has been diagnosed with both hyper-POTS and an AV block, how do you best manage your symptoms? 

Thank you guys!