Chest pain ideas

[Clichy]

I haven't been here in a while. I have Ehlers-Danlos syndrome and Pots treated with fludrocortisone and midodrine . I am currently struggling with chest pain at night as I fall to sleep. Thus far, my testing has been normal. I had a normal catheterization into thousand and eight. I am not having a lot of success getting the chest pain properly diagnosed and treated. There is some concern it might be vasospasms, but those are very hard to test and confirm. I have heard the chest pain is a common complaint in pots, but I am uncomfortable just dismissing it as Pots related. Can someone recommend a good doctor or center but might be able to diagnose and rule out vasospasms but that would also be knowledgeable about autonomic issues. I am in Illinois, but I am willing to travel to a certain extent to get this figured out. Thanks

[toomanyproblems]

Do you know what type of POTS you have? Although not specifically type diagnosed, I'm pretty positive I have hyperadrenergic POTS. I've had trouble with chest pains in the past that I suspect are from vasospasm but no one I've seen yet has been knowledgeable enough about it to diagnose it as such. I'm at the point of simply wanting something to help. The only thing that has helped is clonidine, which I assume helps me by tamping down some of my sympathetic nervous system response. Clonidine is a med that lowers BP though, and midodrine raises it so I don't know if that would fit in with your regimen. My BP is high not low and goes up upon standing, along with my HR. 

I'm sorry I can't answer your question more specifically. Good luck finding someone who can help. 

[Clichy]

Thanks. Not sure what type of POTS I have.  Can it vary? Sometimes my bp drops and sometimes it goes up when I stand. It is interesting that my pots has actually been pretty manageable of late. I seem to get chest pain at night after I lie down and try to fall asleep. It's like something overconstricts instead of relaxes... don't know if it is related to rapid fluid shifts from standing to lying? But prinzmetal is typically like this --angina at rest. But I would like to see someone who would consider that any spasming is in the context of autonomic dysfunction...My cardio is having me try a nitrate, which does the opposite of midodrine...so hard to balance constriction and dilation...

 

[Debbie Rose]

Chest pain can be caused by acid reflux while laying down in bed. Do you have a snack within 2 hours of bedtime? Might be something. I get chest pain while I am just sitting in my recliner, or laying down. All my cardiac workups were OK too.  So if it goes away in a few minutes without other symptoms I just let it go

Debbie

[statesof]

Hi Clichy I went to one of the cardiologists at Rush, I believe it was doctor Krishnen (not sure how you spell that), they ran all the tests including month long holter monitor, echo, ekg, and stress test. They believed my chest pain/ pressure was somehow related to my POTS, said it could possibly be microvascular angina though its hard to test for. I had started on verapamil with my general practitioner and found that it controlled my chest pain except for increases here or there, but it does nothing for my POTS symptoms.

[LastUnicornLady]

Ha e you ever seen a chiropractor? I also have EDS and my ribs get out of alignment easily and often. I have to see my chiropractor at least once every two months to keep my chest pain semi under control. 

 

If you do decide to visit a chiropractor be very careful and talk about your medical issues as length prior to being adjusted. If you can find one, I recommend trying to find a chirp who uses an activator tool instead of manual adjustment, as I find it is significantly more gentle on my fragile joints.

 

I'm not sure if this will help you at all, but that's something I wish I had known about sooner to help relieve my chest pain.