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1 hour ago, CallieAndToby22 said:

Klonopin definitely helps with my conditions as well. I'm not sure about the HR but I had to get on a beta blocker to lower my HR so it didn't help that enough in me either. 

Which bb are you on? Any contraindications with that and the klonopin?

I'm no stranger to klonopin. Been on and off for over a decade for severe anxiety and panic attacks. I recently started back up on 1mg to see if it does anything for my pots. I've heard it is hit or miss. Here's the thing, normally my bp is low, heart rate high, and lots of orthostatic hypotension like symptoms and feeling like passing out. Oddly enough it helps with everything but the HR. My heart rate stays high. I've heard it is supposed to lower HR and BP. What gives? Can anybody explain it? Has anybody had a similar experience? Any info would be appreciated. Thanks! 

13 minutes ago, bizbiz said:

I've also taken metoprolol for years and never had a problem with it. It was the first med they tried for me while I was in hospital after my POTS came on (after childbirth). At the time I had no hesitation or fear of trying new meds so I quite happily took it and didn't even read up on any side effects. I take my dose every morning, but if I'm having a particularly bad day or a bad episode, I may take another dose in the afternoon / evening. Again, no issues with two doses.

Unfortunately, I've since developed a fear of taking any new meds (I think this comes from not wanting to make a POTS flareup any worse than it currently is). It's hard, as I have been prescribed Midodrine a couple of times and have never had the nerve to take it, even though it could very well help. So I totally understand your apprehension with new drugs. 

I don't suffer from asthma, so cannot comment on that aspect.

My pots came on after a childbirth too! Did you have any complications with delivery?

14 hours ago, RecipeForDisaster said:

I have really bad asthma and have done well on metoprolol for years. I was very scared of it!

Thanks! That's good to hear you did well on one despite the asthma. Hopefully I have the same experience. 

36 minutes ago, bizbiz said:

Sitting down will always result in a decrease in heart rate for me.

The only time it won't is if I've just eaten a large meal or had a hot shower. In those instances, it will usually come down after half an hour or so.

I'm surprised sitting wasn't helping me. Maybe I was thinking about it too much and it was subconsciously making me anxious. 

1 hour ago, Sushi said:

Are you seeing an electrophysiologist? They are the ones who are interested in arrhythmias. If you can feel them yourself you could invest in a little Kardia Mobile. They cost about $80 and take a medical grade ECG paired with a phone. They are about the size of a credit card and I always carry one with me so that I can record any weirdness and email it to my electrophysiologist. Great technology and they give you a computer generated analysis of your episode.

Nope. Just a cardiologist. How did you go about seeing an electrophysiologist? Where did you get the device?

3 hours ago, MTRJ75 said:

I'm not sure what you mean. What about beta blockers? They help lower your heart rate, but they're not going to allow me to comfortably eat carbs. 

Well I know that. I have asked previously if you had any success with them. Just curious about your experience with them. 

I've heard a lot about certain beta blockers being a no no for pots patients and a lot about certain ones being off limits for asthmatics. I know it's all trial and error, but any info/experience would be appreciated. I'm also a bit nervous about trying one (I have severe asthma that is not well controlled). Anybody who was also nervous about trying them sharing their experience would be helpful to me as well. Thank you! 

3 hours ago, MTRJ75 said:

I've been mostly Paleo for the last four or five years with the best of intentions. Most of my carbs come from starchy veggies like sweet potatoes at this point. But even if I have some kinda gluten free pasta or pizza, it will still set off a mess of uncomfortable activity. 

I've thought about trying a similar diet. I have loads of gastro issues. What about the beta blockers? 

6 hours ago, Sushi said:

I know that this is one of the last options in the treatment line but it works for me. I had other reasons for it to be prescribed but I have a model of pacemaker that not only prevents my HR from bottoming out but also stops the PACs and PVCs that usually lead into tachy. It feels so good to have a steady, reliable beat. I saw my electrophysiologist yesterday and also had a device check and it is heading off PACs many times each day. It paces me 98% of the time. There is only one model with this feature I believe—the Abbot Assure. I was eligible for it because I also had chronotropic incompetence and pauses, but just to say that if any EP suggests a pacemaker don’t freak, this one has changed my life.

That's amazing! I've never heard of anything like that. I'd like to ask my docs about it, but they don't even seem to like doing the bare minimum. 🤷‍♀️

9 hours ago, POTSie78 said:

My hr continually jumps around sitting or standing. I'm typically in tachycardia but sometimes I go into bradycardia and then back to tachycardia. The only relief I get is to lay down or for a short time after I take propanolol it will shrink the range some but still changes 40-50 bpm. I have an arrhythmia they found using a bardy monitor so they implanted loop recorder.  They've also done 2 echos, 2 stress tests and a carotid ultrasound.  The only thing they've found so far is PVC, PAC, ST, SA, some thickening of the heart muscle, thickening of one carotid, no plaque, trace tricuspid valve leak and mild mitral valve regurgitation. The last time I saw my new PCP she asked me why my hr was jumping around so much.  I said apparently this is what dysautonomia looks like.  It does make me anxious to know this is happening and that my drs haven't been able to control it yet.  It's very uncomfortable and at times its scary because of how it makes me feel.

I totally agree about it being scary! It is so unsettling! It also doesn't help that doctors can't explain it or keep it under control. I would love a loop recorder. An ER doc heard an arrhythmia with the stethoscope, but they haven't been able to catch it with the short term holders they do. 

9 hours ago, Pistol said:

Yes - sitting for me is almost as bad as standing a long time. I have fainted while sitting many times! I second what @cmep37 has said: sitting can cause blood pooling as well. Also - when I get symptomatic from being upright too long just sitting does not stop the symptoms, I have to actually lie down or else squat down in order to redirect blood flow. 

Whenever I have to sit a long time I try to elevate my legs on another chair. 

Thank you! I am going to try some of those techniques!

11 hours ago, cmep37 said:

I agree with you @MTRJ75- I will sometimes get tachy just sitting if I have eaten a heavy meal! I also get tachycardic if I sit still in one position for too long - the blood pools in my legs in just the same way as it does when standing.  I deal with it by moving about every 15-20 minutes and if I have to sit for a long period without being able to move I sit knees to chest as this seems to help.  It's one reason why I struggle in a car - it's not possible to move around or to sit knees to chest so I just fidget my feet a lot. When you get tachy just sitting does your HR drop if you lie down?  Mine always did which reassured me it was just POTS-related.

If I lay flat it does seem to go down a bit. 

17 hours ago, MTRJ75 said:

It’s good that this is happening while you’re wearing the monitor. Yes this sometimes happens to me, occasionally without any pattern. I have noticed it’s more common after meals, especially carbs. Are you on beta blockers yet? It’s frustrating and can be frightening. 

No beta blockers yet. Have you found success with beta blockers? Have you tried the whole low carb thing? 

Anybody get tachy even though you are sitting? Also I noticed with the oximeter that my hr is all over the place 80 then BAM 115 then 135. Down then up then down then up. Just sitting still. Anybody else? I could use some reassure. The last thing I need is for my anxiety to make it worse. On the bright side I'm currently wearing a holter monitor so we'll see if anything of significance shows up when I turn it in. Thank you for your time.