Nothing seems to bring my heart rate down enough?

[SnowBird312]

Hi, this is my first time posting in this forum so I hope I'm doing it correctly!

I developed POTS at the beginning of 2020 after a bout of an unknown viral illness. From then on my symptoms worsened until finally in April I had to quit my actice factory job and drop out of college. I'm currently 22. I was diagnosed with POTS & SVT (AVNRT) in July. I underwent a tilt table test and ablation in September. I was then put on Metoprolol.

I had a fairly rough recovery and was fairly close to bedridden until January. I had awful tremors, dizziness, brainfog, fatigue, and of course tachycardia. My heart rate would shoot up between 140-170bpm upon exertion. In February I did a trial of Ivabradine but it only made me dizzy/disoriented and fatigued. I felt weighted down.

Since then I haven't made much progress. I'm on the metoprolol, I drink the recommended amount of salt/water/electrolytes  (although the salt seems to gives me migraines sometimes). I no longer have brainfog, nor am I dizzy. I get a full 8 hours of sleep each night, 3 meals a day, my diet is high in protein low on carbs. But, I still cannot do anything because of my high heart rate and fatigue upon exertion. I've started walking on the treadmill for a few minutes at a time, slowly. My heart rate gets up to 150-170. 

I went through autonomic testing, my QSART and Valsalva came back normal. My TTT obviously did not, my heart rate hovered around 170bpm. My blood pressure was/is normal and stable. I've never passed out. I don't have comorbities, unless you count SVT as one. I can walk around the house okay, when I'm laying down or sleeping I don't have issues. Is anyone out there like me, or have ideas? I find my case kinda strange. My next appointment with my doctor isn't for three months.

I'm getting tested for sleep apnea in three weeks too, not sure if that could have an impact on my symptoms if I do indeed have it.

[Pistol]

Hello @SnowBird312 - welcome to the forum!!!! I am so sorry you are going through all of this! It's a good thing that your brain fog and dizziness have improved. i am wondering - you said your HR has not come down at all. Is Metoprolol the only beta blocker your doctor has ever prescribed? For many of us just one - or just any - beta blocker does not necessarily work. Some do better with Propranolol or Carvelidol. Personally I tried 3 BB's and Carvelidol is the only one that has helped for the high HR. Also - how much Metoprolol do you take? In most cases once we are sure we can tolerate a med it needs to be slowly increased. For example: I started with 3.125 mg of Carvelidol and then 6.25, then 12.5 then 25 ... as you see, it takes a while to find the right dosage. So - most of us need to go up with the dosage and if that does not work we need to try another BB, and if that does not work maybe Midodrine or Florinef ... depending on the mechanism of your type of POTS. 

Also - have you tried compression hose?

[CallieAndToby]

2 hours ago, SnowBird312 said:

Hi, this is my first time posting in this forum so I hope I'm doing it correctly!

I developed POTS at the beginning of 2020 after a bout of an unknown viral illness. From then on my symptoms worsened until finally in April I had to quit my actice factory job and drop out of college. I'm currently 22. I was diagnosed with POTS & SVT (AVNRT) in July. I underwent a tilt table test and ablation in September. I was then put on Metoprolol.

I had a fairly rough recovery and was fairly close to bedridden until January. I had awful tremors, dizziness, brainfog, fatigue, and of course tachycardia. My heart rate would shoot up between 140-170bpm upon exertion. In February I did a trial of Ivabradine but it only made me dizzy/disoriented and fatigued. I felt weighted down.

Since then I haven't made much progress. I'm on the metoprolol, I drink the recommended amount of salt/water/electrolytes  (although the salt seems to gives me migraines sometimes). I no longer have brainfog, nor am I dizzy. I get a full 8 hours of sleep each night, 3 meals a day, my diet is high in protein low on carbs. But, I still cannot do anything because of my high heart rate and fatigue upon exertion. I've started walking on the treadmill for a few minutes at a time, slowly. My heart rate gets up to 150-170. 

I went through autonomic testing, my QSART and Valsalva came back normal. My TTT obviously did not, my heart rate hovered around 170bpm. My blood pressure was/is normal and stable. I've never passed out. I don't have comorbities, unless you count SVT as one. I can walk around the house okay, when I'm laying down or sleeping I don't have issues. Is anyone out there like me, or have ideas? I find my case kinda strange. My next appointment with my doctor isn't for three months.

I'm getting tested for sleep apnea in three weeks too, not sure if that could have an impact on my symptoms if I do indeed have it.

Just wanted to say I'm sorry. They gave me Bystolic to lower my HR and it was successful but I have very low blood pressure and it made it even lower, sounds like that wouldn't be an issue for you. 

[CJ65]

Hello @SnowBird312 and welcome!

Finding the right combination for relief can take some trial and error and we are all so different. I have had good luck with beta blockers in combo with alpha 2 blockers (first clonidine then guanfacine). I started with Labetalol for 2 years which helped with my hypertension but I stayed in the 100-120 resting HR range. Last year I switched to propranolol which really helped bring my HR down to resting in 70s-80s. Are you able to contact your POTS specialist before your next appt? If you have a primary MD, are they comfortable changing meds? If not maybe they can coordinate with your autonomic team.