Ongoing, undiagnosed chest pain: I want to feel better

Posted by tplefka @tplefka, Apr 18, 2021

Hi! I am posting in the hopes of finding some answers or possible routes for me to explore after 7+ months of undiagnosed chest pains. I am a 25 year old female. In September of 2020 I woke up in the middle of the night with a sharp chest pain, nausea, and dizziness. Prior to that I had been experiencing premature ventricular contractions (PVCs) (did not know that is what they were at the time) sporadically, but after the night in September they started really picking up frequency. I ended up in the ER twice in one week with chest pains and excessive PVCs and left with no diagnosis each time. Since then I have experienced an array of symptoms including: continued chest pains, arm pain, numbness in hands and sometimes face, back and neck pain, fatigue, dizziness, head pressure, the list goes on. I have gotten just about every test done on my heart that I could - echocardiogram, Heart MRI, Holter monitor, stress test - all of which have come back totally normal. I've also explored neurology and got an EMG of my arms and hands as well as a brain and cervical spine MRI - again, all totally normal. I've also had bloodwork done throughout all of this, everything always comes back normal. The problem is, I feel terrible. Almost every single day I experience chest pain that often feels like pressure or squeezing and can be sharp. I've gone onto Nadolol (beta blocker) which has helped minimize my PVCs but has not eliminated them, and they can sometimes be debilitating. Every doctor I've seen (and I've now seen many in search of second opinions) just says because I'm young they don't think I have anything to worry about, which is extremely frustrating when each and every day I am in pain. Sometimes, I have episodes that are so serious I've been close to or gone back into the ER. Even as recently as a few days ago, I woke up in the middle of the night and felt pressure in my chest and then suddenly felt as if my blood was running ice cold and I was extremely faint. While getting ready to go to the ER, I had to lay down before I passed out and slowly started feeling better, so did not go in. I am living my life in constant fear of the worst happening, and am searching for next steps to explore to try to find some answers. Has anyone had a similar experience or any suggestions of where to go next? Any thoughts or help is so appreciated... I want to feel better!

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Hello @tplefka - have you had any luck receiving a diagnosis or treatment? My husband has had the symptoms - almost exactly as you described for over a year now. He's 43, super healthy, and has, like you, been to the ER a handful of times thinking he's having a heart attack or something. Every time he gets bloodwork, stress tests (plus has had an EKG, CT scan, MRI - has NOT yet had an angiogram though) etc and is told there's nothing wrong w his heart. But no one seems to be able to think thru other potential causes. He was prescribed the beta blockers as well but has been reluctant to use them. Like you he describes feeling bad, almost every single day. Its just so weird and frustrating. Just curious if you have had any type of doctor be able to provide any potential causes or diagnoses.
I hope you are doing well and finding answers!

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@ktell

Hello @tplefka - have you had any luck receiving a diagnosis or treatment? My husband has had the symptoms - almost exactly as you described for over a year now. He's 43, super healthy, and has, like you, been to the ER a handful of times thinking he's having a heart attack or something. Every time he gets bloodwork, stress tests (plus has had an EKG, CT scan, MRI - has NOT yet had an angiogram though) etc and is told there's nothing wrong w his heart. But no one seems to be able to think thru other potential causes. He was prescribed the beta blockers as well but has been reluctant to use them. Like you he describes feeling bad, almost every single day. Its just so weird and frustrating. Just curious if you have had any type of doctor be able to provide any potential causes or diagnoses.
I hope you are doing well and finding answers!

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Hello @ktell, Welcome to Connect. I'm not sure that @tplefka is still following Connect. The member last posted in 2021 in this discussion here -- https://connect.mayoclinic.org/comment/597173/.

Has your husband thought about seeking help at a major teaching hospital or health facility like Mayo Clinic?

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Maybe when you need to be seen, go to a different emergency room. If you were traveling, that's what you would need to do. Have your insurance info along.
Not sure where your from, but I'd definitely try something else.

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@johnbishop

Hello @ktell, Welcome to Connect. I'm not sure that @tplefka is still following Connect. The member last posted in 2021 in this discussion here -- https://connect.mayoclinic.org/comment/597173/.

Has your husband thought about seeking help at a major teaching hospital or health facility like Mayo Clinic?

Jump to this post

Hi,
I live near Philadelphia with good doctors. My cardiologist could not give me a definite diagnosis for my chest pain, he encouraged me to go to Mayo Clinic. In Rochester MN they performed more tests and a more detailed catherization, and gave me a specific diagnosis.
Your cardiologist should encourage you to go to a teaching/research hospital specializing in chest pain to get a clearer diagnosis. It was worth the trip for me.

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@wessells

Hi,
I live near Philadelphia with good doctors. My cardiologist could not give me a definite diagnosis for my chest pain, he encouraged me to go to Mayo Clinic. In Rochester MN they performed more tests and a more detailed catherization, and gave me a specific diagnosis.
Your cardiologist should encourage you to go to a teaching/research hospital specializing in chest pain to get a clearer diagnosis. It was worth the trip for me.

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Hi @wessells, Welcome to Connect. Thank you for sharing your experience with Mayo Clinic Rochester and getting a specific diagnosis. Do you mind sharing a little more about the diagnosis you received and any following treatments you had?

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Hi! Thank you for sharing your story. This is so much to go through. I am a 30 year old female with no previous health issues and am having almost the EXACT same experience you went through with almost all the same symptoms and also had a laundry list of testing done with no diagnosis. Also was in and out of the ER. They put me on Cardizem and feels like it’s just masking the issue and not actually getting to the root of what is going on. I’m on month 10. I am currently at Mayo hoping for a diagnosis but have not gotten there yet. If you’re comfortable with sharing, did you end up getting a diagnosis? How are you feeling now? I hope you are doing better!

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@johnbishop

Hello @ktell, Welcome to Connect. I'm not sure that @tplefka is still following Connect. The member last posted in 2021 in this discussion here -- https://connect.mayoclinic.org/comment/597173/.

Has your husband thought about seeking help at a major teaching hospital or health facility like Mayo Clinic?

Jump to this post

Hello, thank you for the reply; he saw a cardiologist at Stanford and he wasn’t able to provide any insight. Currently trying to get him an angiogram to rule out a real cardiac issue. He keeps going to the ER (at home, and we also went in Oregon a few weeks ago when we were on vacation); they run all the necessary tests and rule out a heart attack and nothing changes or helps. If we just called the cardiology Sept at the Mayo Clinic could we get an appointment?

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@rachelroserobertson

Hi! Thank you for sharing your story. This is so much to go through. I am a 30 year old female with no previous health issues and am having almost the EXACT same experience you went through with almost all the same symptoms and also had a laundry list of testing done with no diagnosis. Also was in and out of the ER. They put me on Cardizem and feels like it’s just masking the issue and not actually getting to the root of what is going on. I’m on month 10. I am currently at Mayo hoping for a diagnosis but have not gotten there yet. If you’re comfortable with sharing, did you end up getting a diagnosis? How are you feeling now? I hope you are doing better!

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Hi there, just curious if the Cardizen has helped you at all? My husband received a prescription but hasn’t taken it yet for the reason you described, we need help w a diagnosis and are afraid the meds will just mask the real issue.

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@ktell

Hello, thank you for the reply; he saw a cardiologist at Stanford and he wasn’t able to provide any insight. Currently trying to get him an angiogram to rule out a real cardiac issue. He keeps going to the ER (at home, and we also went in Oregon a few weeks ago when we were on vacation); they run all the necessary tests and rule out a heart attack and nothing changes or helps. If we just called the cardiology Sept at the Mayo Clinic could we get an appointment?

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Hi @ktell, If you would like to seek help from Mayo Clinic, you can contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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@ktell

Hi there, just curious if the Cardizen has helped you at all? My husband received a prescription but hasn’t taken it yet for the reason you described, we need help w a diagnosis and are afraid the meds will just mask the real issue.

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The Cardizem dulled my symptoms a bit. It didn’t take them away by any means and still am in pain daily. It did decrease the intensity and am still working on getting to the root cause. I am about to have a cardiac catheterization next week hoping they can see more the angiogram. Hope that helps!

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