Pots And Chest Pain-- Explanation?

[imapumpkin]

I know that a major symptom of POTS is chest pain and I've seen posts from many other people here who describe the exact same kind of pain I get in my chest. I've tried to research this question and ask my doctors, but no one can seem to answer the question, what it is about POTS/Dysautonomia that causes chest pain?

My heart valve surgery was 4 weeks ago and I was told that any chest pain I had before my surgery should go away after my mitral valve was repaired, but I'm still getting chest pain which I know is most likely because of my POTS. Does anyone know/has anyone been told or read what about POTS would cause chest pain, particularly pain that feels like its coming right through the heart and often radiates to the arm? And why would it only be on the left side localized to around my heart so I'm constantly concerned that its a heart issue?

One of the things I said before my surgery was "Lets get this fixed so I don't have to worry about my heart anymore" but the continued chest pain might make that impossible and I'm worried I'll always in the back of my mind wonder if my heart is actually healthy or whether its the POTS making trouble.

[Katybug]

Since you are still this close to your surgery, I wouldn't assume its just POTS until the docs give you the all clear that everything else is OK. That being said, a while a go we had a thread about this and the general conjecture was that POTSies often have thoracic perfusion and aren't getting and pumping enough blood through their heart and that this is the cause of the chest pain. Like I said, I think that was our general concensus but I don't remember anyone having actually medical publications on it posted.

[bebe127]

Pumpkin,

I deal with chest pain daily, but I'm with Kaybug, it might be too soon after surgery to tell.

I've asked various dr.s to no avail...here are some of the brilliant responses I've gotten in the past:

• "You're too young to have heart problems."
• "The pain you're feeling has nothing to do with your heart or POTS."
• "This will not hurt you."
• "Your tests are all normal."
• "Maybe you should seek out a therapist."

I agree too, although haven't seen the thread on this, that one would almost have to experience some sort of chest pain if our bodies are trying to pump blood where it needs to go, either working over-/under-time.

Hope you get some answers. I would always consult the dr. with your concerns especially so soon after surgery.

Feel better

[bellgirl]

Being hypovolemic, and having low blood pressure, could also be a factor. When did you have your surgery? I would give it some time and talk with your doctor. I have Mitral Valve Prolapse, too, and always thought it was related to that, too! It is worse in the cold weather for me, so it could have something to do with vasoconstriction, too.

[tinkerbella]

I would like to understand the chest pain with POTS also... I hate to tell anyone I have it. I have been sent to the ER one too many times, yet my father died of a heart attack fairly youn age. When they come on they are pretty bad, I'm always OK. I would hate to be wrong one day... Any good articles on chest

pain and POTS. Hope you are doing well imapumpkin. Get Well : ) Soon.

[Batik]

In my case it's probably costochondritis (inflammation of the cartilage between the ribs), which is usual in fibro, which many of us have. One clue is that it's tender to the touch on the surface, which wouldn't happen with cardiac pain, so I'm told. Gentle stretches to open up the chest help.

[SeattleRain]

After speaking to my cardiologist and his electrophysiologist, my chest pain is likely due to reduced blood volume/flow to my chest. I had significant chest pains towards the end of my TTT and can only speculate that it was due to the blood pooling in my lower half more and more as the test went by.

I used to have chest pains while lying down which doesn't make as much sense but then again I'd get light headed while lying down, too.

[sue1234]

I've recently been standing more and more. For the first time, I've been experiencing chest pain toward the end of my time limit of standing. For me, it feels more like muscles are clenching inside my upper abdomen/chest. As soon as I sit and "relax", the pain goes away. So, for me, I'm leaning more to a muscular issue, but have no clue why the chest muscles and not the leg muscles.

[joyagh]

I've read that it's vasoconstriction in the heart arteries, in compensation for hypovolemia.

[E246]

Hi Pumpkin,

Really hope this is post surgery and you feel better soon.

This is also my biggest problem - and feel some relief that a new cardio has offered an explanation which is in a recent post -Chest pain microvascular Angina....

I have now received the summary letter which I am so happy will be on my records as like a few of you I am fed up of my records being full of "unexplained chest pain" sometimes with unwanted implication.

This is an abridged exert of what he said -

"In my opinion POTS is part of a spectrum of overlapping diseases that affect the nervous system......The chest pain could be due to hypoperfusion of the micro-circulatation due to tachycardia or may overlap with microvascular angina commonly called syndrome X.....this syndrome exists in patients who have normal epicardial coronary arteries.....cardiac syndrome X has been treated in the past with Imipramine.....SSNR...SNRI ...and would be worth considering.

He also discussed micro infarctions which are caused in the small vessels by lack of blood flow and can cause pain.

For me this is a breakthrough and i want to share it with everyone who has POTS and has ever suffered from chest pain.

What I am understanding now is that there is sometimes an increase in blood pressure and it feels like a spasm and that also seems to increase the pain. So like you said Joyagh - a vascoconstriction.

He has suggested that in London i am tested properly for this - I presume this is the test when they speed up your heart and MRI the blood flow. I still wonder though if my body is not in a pots "spasm" then maybe it will not show anything unusual.

Seattle - From what I understand about Syndrome X/Microvascular angina, it continues after you have sat and laid down because it has already starved the heart of oxygen or the spasm continues because it is caused by POTS even after the event. This is how it differs from normal angina. But I get both as well - sometimes it goes when i drink or recline but often i am left with chest pain for hours.

[westernmass]

Fwiw... This is the symptom for me that was once my WORST symptom, very debilitating and definitely scary! And acupuncture/herbs has almostade it disappear. I still get it, maybe even once a day, but soooo much milder than it used to be.

Many others have posted what else I would have said, but wanted to add this

[E246]

Westernmass,

What herbs did you find help.

Thanks

[imapumpkin]

Thanks everyone for the responses...The chest pain has gotten a little scary. My vitals signs are normal and my visiting nurse says my heart sounds great..my cardiologist two weeks ago seemed very pleased with my progress.Still, even before my valve was fixed doctors couldn't pinpoint what was causing the pain that really truly feels like its coming from my heart. It feels like a large needle passing right through the center...and all the visiting nurses and doctors say "call 911 if your chest feels squeezing, heavy or tight" but its extremely hard to tell if that's the case because my whole chest (sternum, ribs, clavicles and shoulders) is tight and sore because I had a mini-sternotomy and my breast bone is healing and my other muscular/skeletal pains come from deconditioning do to my activity and movement limitations and my extreme discomfort sleeping propped up flat on my back.

This is one of those extra frustrating things about having a little known and obscure illness. I just wish someone in the medical community could give me a straight answer other than "it's the POTS." The vasoconstriction due to low blood volume makes sense and I hope that is what I am feeling. It just is such a drag (and provokes anxiety) knowing that as long as my POTS is active, I'm going to be looking over my shoulder so to speak and in some tiny portion of my brain worrying that my heart is in jeopardy. After all, everyone associates chest pain that radiates to the arm with a heart attack. I was told I have a strong heart muscle by a world renowned Cardiac Surgeon, I am young and have no blockages and I'm told that neither POTS nor MVP (esp a repaired one) are associated with any increased risk of heart attack, but my chest hurts like this and my anxiety level spikes. Especially after heart surgery. I've gotten neurotic about checking my vital signs. My pulse ox is usually 97-99, my bp has been decent and my HR is pretty consistently in the 90s. Still I worry that chest pain = heart attack and its hard to chill out and not worry because I think that if something ever were to REALLY go wrong, it would be like the boy who cried wolf, except its the chick who cried heart attack .

Thanks again for the reassurances.

[westernmass]

Emma- the herbs vary week to week and are entirely based on my constitution and symptoms at the time. Chinese medicine is very different than western in that three people with say IBS would have three different TCM diagnoses... And POTS is even more complex You really need a qualified practioner to treat you. PM me if you want to talk more about it.

Imapumpkin- I'm so sorry for your situation and your pain. I know the feeling of thinking "well, I have every symptom on the 'how-to-know-you're-having-a-heartattack' list". When chest pain was my worst symptom I ended up in the ER three times before realizing either its not my heart, they won't do anything for the pain anyway, or really a combination of both of those. It seems like you've been able to pretty much rule out a physical heart issue though? So that's good news, even though its still scary and doesn't answer the question of what IS causing the pain...

Sending positive vibes your way...

[Joann]

When all of "this" started, I thought I was having angina. Pressure/tightness at sternum, left side of neck, face and leg pain. Often after activity and it continually got worse, and would then stay even after laying down. I would be told my heart was fine. It eventually got so bad my bp just sky rocketed. It continues to be my worse problem and still not addressed. What did they suggest you do, Emma?

Imapumkin, I understand how awful it feels and wish I had answers for you and me and everyone else.

[E246]

Hi Pumpkin,

I suppose that it is if anything feels different you should always get it checked. Thats what my GP say and i think i am resigned to getting checked even though i have been to A&E a dozen times. Yes we have the symptoms of a heart attack but all our vitals and tests show nothing - it feels unbelievable it can be nothing.

Joann - i feel i have crashed Pumpkins post - sorry - but did a pos about this a couple of weeks ago - i will bump it up.

In the meantime - i am waiting to see a specialist next week and the suggestion from the cardio was antideppresants to calm the nervous system and stop the BP spikes. But he want me to delay commencing treatment until i have seen the pots specialist. However he was the best cardio i have seen - and i feel at last someone even believed me about how bad the chest pain was. Just look up microvascular angina - it is all there for me.

Hope this helps anyone with chest pain - i have not seen much about this on Dinet and it might help other.