POTS — Chest Pain and a TON of Pressure?

[Faustus]

Hello, everyone! New member, still getting used to her POTS diagnosis from July. I’m learning the in’s and outs of this complex little problem, while having others tossed on top of me.

My main question of this evening is: Do you regularly get excruciating chest pains (usually a dull/ache sensation) or have the sensation of something heavy on your chest?

This has sent me into a panic on more than one occasion, taking me to the hospital thinking that I must be having a heart attack: after all, that’s all that fits, right? Especially when you have back, jaw, or left arm pain? And nausea? It just sounds like one. But never in all of my trips has it been.

(Mind you — since I began having those trips, I also received diagnoses of Fibromyalgia and EDS of an unspecified type until my genetics testing appointment in June, so that adds to the pain.)

But then there are nights like tonight where my chest pressure is absolutely debilitating. I can’t lie on my back without feeling like I’m being crushed, and sitting up causes the pain. So I’m wondering: anyone else get these feelings, or just me? And if you do get them, what helps relieve your symptoms?

(As another baseline of reference: I currently drink around 128oz water daily, add salt where I can, am on Acebutolol 200mg as a beta blocker [that has stopped working], and am still struggling hard.)

[Pistol]

Hi @Faustus - welcome to the forum. Yes - I too get severe chest pains, unfortunately this is not uncommon for POTS. It has to do with tachycardia and circulation changes to the heart. I used to think that I have a heart attack too, especially since the pain radiated up my neck and down my arm. Most often I also have high BP with the CP. Beta blockers and calcium channel blockers have helped. But - to make sure that this is just POTS related CP you should see a cardiologist. If EKG and cardiac enzymes are normal you should have a stress test to be sure. I had several stress tests over the years and finally had a heart cath in January that showed no blockages but angina. So - now when I get CP I can be sure that it is not a heart attack. I have also found that IV fluids get rid of the CP in my case, and when my symptoms are controlled I do not have the pain. So - please do not dismiss the co until you are thoroughly checked by your cardiologist. Best wishes!

[StayAtHomeMom]

I get the chest pains too. It has been a while since this symptom has been bothersome for me but before I knew what was going on I thought I was having a heart attack too. I have a previous diagnosis of costocondritis so now when I get it I take an NSAID to see if it helps. I had a cardiologist rule out any heart issues and every time I go to the cardiologist's office they do an EKG and it is always fine. It took me a while after my diagnosis of POTS to get comfortable with all of the weird things and symptoms my body does, but ruling out other things helped. If you have a symptom that is bothersome you should always check with your doctor. 

There are other beta blockers you can try since yours isn't working. I take metoprolol tartrate. I also take midodrine (a vasoconstrictor) as needed. 

[Faustus]

I've been through three Cardiologists -- two who missed my POTS entirely and the third who finally made the diagnosis. Worn two 7-day holter monitors, had one echocardiogram, and had blood tests. Monitor showed I had sinus tachy/brady, and some PVCs/PACs, but that has since been chalked up to the POTS. Echo was beautiful. At the time my CRP was slightly elevated (8), but we also know I have had chronic costocondritis since November of 2017 for reasons unknown, so that very well could cause the elevation in the inflammatory markers. NSAIDs have done nothing to relieve that, so everyone is a bit at their wits end on me.

I do take a beta blocker once daily (because twice drops my resting HR to the low 40s and it becomes dangerously low come sleep -- it also gives me major sinus bradycardia episodes) in the form of Acebutlol, and my former GP has me on Simvastatin as a precaution because taking my gallbladder out + sudden massive weight loss raised my lipids levels a bit (not to a dangerous point, but she wanted to lower them back where they were). So that is also taken once daily. We're talking with my Cardiologist about switching me to Propanolol since it is more extended release than Acebutolol.

I've pushed for IV therapy because it helps me so much in the hospital, but none of the Cardiologists I have dealt with understand it or have ever referred out a patient for it, so they keep refusing me right now. Nice to know I'm not totally crazy about this pressure and pain issue, though.

[Billie Gene]

Welcome, chest pains and pressure are very common with POTS. I use to get them all the time and painful to. However, I get them every now and then but they are very bothersome. I’m on  Midodrine and Bystolic and these meds have been a miracle when it comes to controlling my POTS symptoms. Good Luck!

[Pistol]

@Faustus - google IV saline therapy for POTS. There are several articles about it that you can share with your cardiologist recommending this treatment for refractory POTS. also check on Dysautonomia information network , they have an exceelent article by Dr Blair Grubb. I always share articles with my docs - I have the time to research, they do not. that has helped me with getting several treatments.