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Posted

Hey guys,

Since 17-18 when I got POTS, I get a Angina type chest pain when I excersise, doctors all say its not coronary artery disease at my age which I agree it would not happen unless I had a genetic form or problem which I dont.

I've had

ECGS,

Stress ECG,

Echocardiogram,

24 Hour ECG,

Cardiac MRI and MRA

Cholesterol and bloods

All normal to the point it got me thinking it cant be my heart!

Now its come to light I do have POTS, even though quite mild compared to a lot of people here, I do feel for you. That its probably related.

Any one get something similar? really puts me off doing things, sometimes I get it walking somewhere with a friend and Im like stop a minute got chest pain, sound like im dieing!

Posted

I get chest pain from time to time and have been told it is a normal symptom of POTS by my doctor. He actually was surprised by how infrequently I experience it compared to other patients. Just keep in mind that if the tests were is normal it is likely just your POTS acting up, that helps me deal with it a lot!

I mistakenly went to the ER once for my chest pain before my diagnosis, only thing they found was an elevated heart rate, big surprise and quite an expensive mistake on my part.

Posted

Ive been to the ER like 5 times now, all they did was an ECG and said I was not having heart attack lol. I waiting for that 2 minute answer in the wiating room for like 8 hours.

The only possible thing with if it was my heart is heart disease but getting that at 18, it doesnt happen, so i'll have to deal with it.

Posted

I deal with constant chest pain even after my vavlve surgery. my POTS specialist essentially just said it happens to POTS patients and there's nothing you can do about it. as long as your tests check out, which it seems like they do since you've had quit an array, i would trust your doctor that you've been truly check and only be concerned if your chest pain changes drastically.

if peace of mind is mind is important to you, you could do what i did, which is to buy a pulse oximeter, they're about forty dollars and when you have chest pain put it on, check your oxygen saturation and your hr. i figure that if my vitals look normal, i'm probably fine for the moment.

Guest Alex
Posted

I had my shares of chest pain with POTS. After countless ECG's, several Holters, echocardiograms, stress tests, blood work ...the usual all drs I've seen concluded I cannot have a cardiac problem. The drs have also ruled out GI issues. No one was able to tell me what it can be though.

What I noticed is that my chest pain started being an issue after I was put on beta blockers. Shortly after I came off betas (personal decision) I stopped having the nasty chest pain episodes. Coincidence ?!

Alex

Posted

I experienced Chest pain with shortness of breath for the first time when I was only 5 years old, my dad took me to ER then to our family Dr., they told him that I am a

perfectly healthy child and nothing is wrong with me (I wish)!

My poor dad never gave up, for many years he took me to many Dr.s,as he himself was suffering from 3 types of Dysautonomia; he left this world, never got an answer

neither for himself nor for me.

For many many years, I thought that every human being is like me and my dad! Because I grew up and witnessed pain, fatigue, tachycardia, shortness of breath and other symptoms.

For half a century, I have been suffering from chest pain especially in the mornings, lasting for 1-3 hours; one time I was given Nitro which made my heart rate worse

and gave me a very bad headache.

It is so sad that I am going nowhere with my condition and treatment, I am just getting worse.

Please don't be discouraged reading my sad story, because:

1) I am an old woman.

2) I have many other health issues beside Dysautonomia.

Warm hugs to all of you.

Posted

A little bit of chest pain is a new symptom for me. I'm sorta thinkin "really???????" I did aaaaaaallllllll the other symptoms with a certain amount of charm. So now I'm gonna have some chest pain too? All of my cardiac work up was clear, so I don't have to worry. But it's annoying and forces me to slow down or stop what I'm doing.

Posted

I have chest pain everyday also.

I had a normal nuclear stress test, normal EKG, normal heart enzymes, my carotids were the clearest that the tech had ever seen.

My cardiologist told me my heart is fine and to not worry about the chest pain. Still it is worrisome though.

And, what if one day it is really something, and I think 'oh, it's just the dysautonomia' ?????

Posted

Well it's hard not to worry because it hurts!

If I am pushing the limit I will get very sharp stabs in the chest that about take my breath away.

The other sign I've done too much is intense pressure in the chest that lays me out for an hour or more.

It takes my breath away also.

I usually have palpatations with this until it resolves and feel like I'm on my last leg.

I try to accept it but it's a hopeless feeling to know you're just out of commision for probably the rest of the day.

So I guess we can adjust to the fact that this is a part of our life now but dealing with pain has certain affects physically and mentally.

I often wake up with it too and so the days I don't experience it I count my blessings.

Posted

Andybonse I also experience chest pain/discomfort on a fairly regular basis. It can be sharp, stabbing, crushing or just a feeling of severe pressure. Except for the pressure type pain the other types of pain are always left sided. It can occur with activity or at rest. The pain can be very brief or lengthy and immobilizing. I do have cardiac abnormalities but have been told by my cardiologist that the chest pain I am experiencing is not related to my cardiac condition but must be pots related. Since getting my tachycardia under control the chest pain problem is much improved from where it was.

Alex,

I have had chest pain problems with beta blockers as well. When I was first diagnosed with pots in 2006 my cardiologist kept prescribing large doses of different beta blockers I could not tolerate so I just dealt with being tachy until 2011 then between clonidine and mestinon the tachy was under control but then as time went on my cardiologist here felt it necessary to add in a small dose of labatalol that resulted in such severe chest pain I thought I was going to have to be taken to the ER so that med was dcd and we tried propranalol 10 mg bid which resulted in even worst chest pain. Now a year later I am taking propranalol 5 mg bid in addition to my other meds and have not had the same severe chest pain experience as before. Must have been dosage related. I did decide in the past few days to dc the propranalol myself as I am now having problems with brady and severe hypotensive episodes.

Here is just one of many articles addressing pots and chest pain;

Raj et al.

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Destroy user interface control[8] suggested the chest pains experienced in POTS are almost never thought to be due to coronary artery obstruction, but may be associated with electrocardiographic (EKG) changes in the inferior leads, particularly when upright. They suggest the left sided heart pain common among POTS sufferers is due to differences in heart chamber pressures, abnormal heart wall motions, and/or nerve damage. However, based on the Qi Fu's study

The following popper user interface control may not be accessible. Tab to the next button to revert the control to an accessible version.

Destroy user interface control[21] the chest pain may be associated with reduced blood supply to the heart, hence ischemia, which will result in the angina like chest pain.

I know that chest pain can still be a frightening thing to deal with in spite of being told that it is a normal pots symptom. I think some of the difficulty in all of this is being ably to identify what goes beyond a pots symptom and moves into something more serious. I guess that's where trusting your own instincts and that of your doctor come into play. I'm sorry you are having to deal with this and at such a young age especially.

Janet

Guest Alex
Posted

Janet,

it took me a while but I finally figured out that betas were responsible for my chest pain - none of the many drs I've seen and complained about my chest pain considered the pills were an issue. Unfortunately I spent countless hours in the ER with this problem, as at times the pain was excruciating. Now that I'm off betas and my chest pain is gone I know I was right.

I've had countless ECG's while experiencing episodes of chest pain (be it at rest or while standing) and none of them showed any abnormalities in my case, but whatever mechanism was at play there I'm glad I no longer have to deal with this on a daily basis (at least for now).

A while ago another dinet member was investigating the possibility of the chest pain being caused by microvascular angina or Prinzmetal angina (can't recall which one) - not sure whether she figured things out.

I know that we tend to attribute many of our symptoms to dysautonomia, but in my opinion chest pain is not something that should be taken lightly or ignored.

Alex

Posted

Alex,

I'm so glad chest pain is not a regular problem for you anymore and that getting off beta blockers helped your situation so much.

I hope I did not sound as if I was minimizing chest pain as that was not my intent. I think if one has gone through comprehensive testing to rule out a serious cardiac condition and the results are negative and there is a question of test validity or Cardiologist competency then one needs to get another opinion. You are correct in that all symptoms cannot just be attributed to having dysautonomia.

The article excerpt I posted is just a proposed theory about pots and possible reasons for chest pain. Not about chest pain in general.

Again, I am not in any way what so ever suggesting that one should just ignore chest pain !

Guest Alex
Posted

Janet,

my apologies if my message sounded as if directed at you. It was only the 1st paragraph that I wrote in response to your post. The rest were just my personal 'musings' on the topic.

Alex :)

Posted

I had such bad pain in my arm that it radiated all the way up my chin and down my arm, it was so bad. I went to the ER and they said I had pericarditis. (which I didn't) Because I went for a follow up and they said that I couldn't have ever had pericarditis because there was no apparent swelling or anything of the sort. I don't understand the technicalities of pericarditis but I thought I was having a heart attack and it was horrible. But I have chest pain almost every single day. Standing up, breathing deeply, eating too much are a few things that trigger it.

Posted

Alex,

Thank you for that. I am not usually that reactive but I guess being a nurse makes me feel more responsible and held to a higher standard, if you will, for communicating accurately anything that is health related. I am in a constant battle with brain function issues and do have difficulty expressing myself at times so especially with the more serious topics I try so very hard to eliminate any misunderstandings. Very kind of you to apologize. :)

Anna,

Blood vessel spasms could certainly cause angina like chest pain.

Also, in regards to beta blockers, their potency is significantly increased when prescribed along with something like clonidine.

Janet

  • 4 weeks later...
Posted

Hi everyone. I also have chest pains, but mine is almost always on the right upper part of my chest and in the same place. Sometimes its a shooting pain, and sometimes more dull pain that could last for hours. Shooting pains come quick and go away. I have been to ER like 5 times for chest pains, the results show its not related to heart. My cardio doc did 2 echos, many ekgs, stress test, 24 & 48 hr holter, also 10 days even monitor (dont know results yet). So far doctor says my heart is healthy and I should not worry. 3 cardio docs said i am fine. Although the disautonomia cardio doc said that pain could be related to spasms in the arteries and it is not serious, but needs to be treated because in some severe cases the ischemia could lead to heart attack. This statement concerns me a lot. However, all ather cardio docs said i have nothing to worry about. I asked if I can get the heart mri, but the doc said that my heart is healthy and I dont need it. Would you advice me to do anymore tests or whatever I already did is enough. Ohh and I had chest ct scan done to check for pulmonary embolism ans all arteries are clear. But this was checked more for lungs not heart, so not sure if it covered all of the adteries in that area. I am freaking out when I get that pain and feel if i am not next to hospital, i will.die of heart attack or something. I am 31, take midodrine 2.5 mg two time per day, xanax 0.25 three times a day. Tried beta blockers but has increased cougj so stopped after 3 days. I am so scared. I did notice that when I went off xanax for a month the pain stoped, not sure if it was coincidence or not, but when went back pains returned. I have to fly soon and so scared if I get pains in.the airplain. My doc said that if stress test showed negative i have no coronery desease. Do you think i need more tests then already done for me. I am concerned thay the pain is in the same place.

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