Chest Pain /Spasms and Trouble Breathing

[Karen Elaine]

Hi! I've had POTS for several years now, but more recently have been dealing with episodes of severe chest pain. They actually started just after having my gallbladder removed in 2019. So I started having constant chest pain/tightness about a month after my surgery (dr thinks that may be costochondritis), but then I also have these times where my chest starts going into spasms and I feel like I cannot draw a breath in. The tight crushing pain starts below my right ribcage and quickly moves all the way across my chest then up to the center. Feels like there is a tight band wrapped around my chest and the pain also radiates to my back. It comes in waves -- it'll be really tight, then ease up for about 15 min, then repeat this for an hour or more. I can't lay down as that makes it so much worse.

My vitals (BP, HR, and oxygen levels) are always stable during an episode. I've been to the ER, but they never find anything. Also have seen a pulmonologist who ran several tests and did a breathing assessment. I've treated my acid reflux/heartburn and improved my diet to avoid known triggers. My dr. told me that as long as my vitals were normal, I should be fine not going to the ER for this. All my drs at this point think it is simply related to POTS. So I drink some hot tea, take magnesium, and use my heating pad to try to calm things down and help me relax. 

As far as triggers go, there have been so many, it's hard to find any real connection. The first few times it happened, it was definitely a reaction to OTC NSAIDs, so I've had to stop taking those. Being out in the heat will trigger it. Also drinking carbonated beverages, which is kind of weird, and sometimes strong smells like perfume, hairspray, or chemicals. 

Another thing is that it was happening every few months or so, then I went on a prescription anti-inflammatory for other issues, and it stopped completely. Then I developed gastritis early this year, had to stop the prescription, and everything has come back much worse this time- it occurs almost every other week now. 

Anyway, I know chest pain is very common with dysautonomia, but just wondering if anyone has had similar experiences with this type of chest pain and symptoms?? Thank you!  

[Pistol]

Hello @kel15 - I am so sorry you are having such a bad time with this! I get chest pain from POTS regularly, mine is caused by constriction of blood vessels around the heart ( I have HPOTS, so my POTS symptoms are mainly due to tight vessels ). The pain for me is in the left side of the chest radiating up my left neck, also accompanied by shortness of breath. Reading your post I noticed that there are several things pointing to the likelihood of your chest pain coming from GI issues: you mention it started shortly after the gallbladder surgery, it starts under the right rib cage and it comes in waves - like cramps. All of these issues could be GI related. The fact that you respond well to NSAIDS however leads me to believe that it is some type of inflammation. Have you tried to get ahold of the surgeon who did your surgery? What if it is related to the surgery? Also - have they done a Ultrasound, chest xray or CT scan to see what is going on? --- I know that chronic pain from gallbladder removal is not that uncommon, so that is another reason you might want to contact the surgeon. And  you may also want to see a GI specialist. 

The chest pain you describe does not sound like the typical pain encountered from POTS, and the fact that all cardiac testing is normal is  relief. I hope they can find what's going on!

[Karen Elaine]

Thank you, @Pistol! I'm pretty sure I have hyperPOTS too (just can't get anyone to actually test for and diagnose it), but, yes, it does sound different. I actually haven't spoken directly to my surgeon-- maybe that's something I should do though. I definitely have GI issues and chronic pain related to not having a gallbladder now, and I have followed up with my GI since surgery. I've had chest x-rays, CT scan, barium swallow, endoscopy, breathing tests,... so I feel like they have been pretty thorough. I do have acid reflux and gastritis, but the reflux is pretty well managed now - that's actually what my pulmonologist thought was causing my chest pain when all the tests came back clear. They haven't found anything else so far, and so just put it all down to POTS for now. 

[Ashleigh]

Hi @kel15! I am prone to costochondritis (mine also started after gallbladder removal which is weird - I never associated the two) and some of what you’re describing is familiar to me - crushing chest pain, feeling like you can’t draw in a breath, laying down making the pain worse, etc. The first time it happened to me I thought for sure I was having a heart attack and went to the ER, but every test came back completely fine. I’ve never heard of it being triggered by food or smells, it’s usually triggered by movement, but maybe those things cause you to tense certain muscles that trigger it. It’s an inflammatory condition, so it does make sense that it would resolve while taking anti-inflammatory medication. 
If it is costo, I highly recommend looking into Steve August’s videos and his Backpod device. They have helped me tremendously although using the backpod was excruciating for the first few weeks. Anti-inflammatories and ice also help when I’m having a bad flare. 

[Karen Elaine]

Thank you @Ashleigh for the feedback and recommendations! I'm glad you found some things that help your pain. I can't take anti-inflammatories now, but they did help me too when I was on them. Yes- I have noticed that it's much worse whenever I'm in a flare or other situation that makes me tense. After having further evaluation and testing over the last few weeks, I'm pretty sure there is more than one thing causing my chest pain, so that would make sense that not all my symptoms will fit into one category.

[Karen Elaine]

New findings and question...

So my symptoms have been escalating over the last few weeks, I think maybe due to spring allergies... I passed out after taking meds, ended up in the ER, and have been in a flare since. It's pretty clear now that my beta-blocker (propranolol) is causing some or most of my bad episodes of chest pain/trouble breathing. So I'm currently tapering off of that. Also being evaluated for the possibility of mild asthma or some other airway problem (Albuterol helps a lot for attacks, but I can't take the steroid inhaler because of side effects). My cardiologist wants me to try a calcium channel blocker (Diltiazem) to help with tachycardia/chest pain and he is referring me to a local POTS specialist. After research (and reading here in the forums  ), I think I'm comfortable giving the CCB a try, but am somewhat concerned about the side effects of vasodilation. I already have blood pooling and low/normal BP with some days being slightly elevated.

Any thoughts on this are welcome! Also, does anyone here have experience with asthma and POTS? I've never done well with steroids, so am looking for other options to manage it.

Thank you!

 

 

[Pistol]

@kel15 - I take Diltiazem for POTS, and it has helped immensely! I have HPOTS and often run both high BP and HR. Other times I pass out and have low BP. I take the CCB along with a BB ( Carvelidol ). With the Diltiazem I started years ago at the very lowest dose: 30 mg twice a day. Once I realized I tolerated it we increased slowly and I ended up on 240 mg of the XL dose. Now I can decrease to 180 mg during the warmer weather months and only take the 240 mg in the winter. My vessels both dilate AND constrict, so in the cold I seem to have more vasoconstriction and in the summer more dilation. 

I would not be afraid to try the CCB, but start at a low dose and keep an eye on your BP. For me I feel great when I have a low BP but worse when my BP goes up. So even if my BP is 90/50 I still take my meds, and the syncopal episodes have decreased on the CCB. ( Although from what medicine teaches it should drop more yet on CCB - for me it stabilizes ). 

[Karen Elaine]

@PistolThis is very helpful information- thank you so much!! Those are the things I've been confused about with hyperPOTS-- my symptoms line up with that more than with the other types, but the lower BP and symptoms of both vasoconstriction/dilation didn't make sense to me. So you can have both sides of it with this type? It's reassuring that this medication has helped you with similar symptoms. And I'd be starting on the low dose of 30mg/day too.

Yes, that is interesting that it stabilizes things for you when you think it would make them worse... it makes me more comfortable giving it a try. 

 

[Pistol]

@kel15 

6 hours ago, kel15 said:

And I'd be starting on the low dose of 30mg/day too.

are you sure you are supposed to only take 30 mg once a day? The short-acting 30 mg usually is taken twice daily. --- I hope it works as good for you as it does for me 😉!

[Karen Elaine]

Thank you!  -- yes, my prescription would be for 30mg x3/day (pretty sure that's what it was). Haven't picked it up yet...