What Is "normal Pots Chest Pain"-Cardio Disputed My Experience But Offer Nothing

[E246]

Have just had another overnight stay in hospital - chest pain, tachycardia, bradycardia, feeling very unwell, shaking, v cold.

First doctor so glib and rude but when pressed had never heard of hyperpots. He also told me wearing a heart monitor was bad idea as was probably causing anxiety.

Second doc - cardio - very unfriendly but said my chest pain does not fit with micro vascular angina as it still is present when i lie down. it is brought on by exertion and goes into neck and arm and have sharp pains in the chest. But when it is bad it is still there when resting. This has gone on all week. always worse when exerting myself. Sharp pain followed by high rise.

He also said it did not fit into cardiac pain as ecg, vital etc all were normal and so it was not cardiac,

I held my ground with both doctors and said it was about time that they stopped saying there was nothing wrong because i did not fit into their boxes and listen to what are very real symptoms seriously affecting my life and it was about time they helped find solutions.

However i want to know what others would say are "typical" pots chest pains and if anyone else gets arm pain, sharp chest pain that can last for long periods, is always better lying down but does not necessarily go away. And the sharp pain can briefly increase the HR. This is on top of sudden jumps for a few seconds to over 200 and adrenal surges ( which are the worse)

Any help appreciated - i felt at a loss to answer his claims.

[HopeSprings]

I held my ground with both doctors and said it was about time that they stopped saying there was nothing wrong because i did not fit into their boxes and listen to what are very real symptoms seriously affecting my life and it was about time they helped find solutions.

Not sure what's typical with POTS, but my chest pain feels like extreme pressure in the chest/sternum area and a squeezing sensation in my heart - like my heart is about to explode. I just want to commend you on standing up to those Doctors. It's not an easy thing to do, especially when we're feeling so vulnerable and unwell. Good for you!

[brethor9]

Emma I get what you are describing all the time!!! pain in the chest, left arm right up into the neck....I actually get pain in the neck veins and feel like I am being strangled from the inside out....horrible feeling and I am always sure each time it happens its going to be the last.......but Im still here I have asked my cardio dr about this and he feels it is related to the high adrenaline, POTS and the possible MCAD I may have. I find the best thing that works for me is to take something that relaxes my system and I find after awhile things will settle down. Also do you suffer from acid reflux at all because believe it or not that stuff can cause wicked nasty symptoms!! even heart related symptoms. Maybe try taking a Zantac and see if it has any effect on your symptoms? I hope this passes for you soon! and just know you are not alone

Bren

[E246]

Hi,

Thanks both.

Bren i do not really suffer with my stomach but i bought benadryl on friday and maybe should have tried it. lots say that works.

Like a lot of people i am really frightened once i am in that state to take something for the first time that could possibly make me feel even i% worse. But it is really reassurring that you experience the same when i am being told it is not pots. Not that i would wish it on anyone.

And the truth is i feel like i am going to die as my chest is so squeezed and sometimes feels like it will explode. And it burns.

Thanks again - can go back armed with more info - thats the intention.

[Katybug]

Emma,

I also get what you are describing quite often and it is associated with my POTS. When my other symtoms are worse so is the chest pain. Mine goes across my chest, into my left arm and clavical, and into my neck (both sides but worse on left). Along with the pain in my neck it feels like all the vasculature in my neck constricts badly when I have the pain. I also often feel like there is severe pressure on my chest making it harder to breathe (although I am technically breathing fine and have no asthma). These symptoms do get better when I lay down but do not go completely away on bad days.

I used to get really scared when I would have this but I have gotten used to it and I can only say that I hope that I will be able to distinguish what I have from POTS vs. a real cardiac crisis should it ever happen one day.

Katie

[houswoea]

I used to get that... like such extreme chest pain that I dreamed about ripping my heart of with my hands. I still have no idea what this was. Was super allergic to pain pills, I don't recommend trying that for the chest pain. Now on gabapentin. It seemingly helps. I only have really bad pains maybe once a month now.

[janiedelite]

Another thing about "normal POTS chest pain" is that it should get better once you're lying down.

[abnel]

I suffered severe chest pressure 24/7 for first 12 months of POTS, not alleviated by lying down. All cardiac investigations came back normal. The worse the chest pressure, the worse my breathing got too. (I now have breathing issues completely unrelated to chest pressure - strange how things change).

The chest pressure seems to have improved over time and is not severe all the time like it used to be, thank goodness.

[E246]

Thanks for all those replies. it is really reassuring. Had another episode last night with adrenaline surges which lasted 5 hours, spent 2 hours on the floor in the recovery position despite valium, bblocker and paracetemol. its the worse i have been. But it is like a very heavy person standing on my chest and i can feel the adrenaline. i think my bp is up too.

Does it affect your blood pressure or it actually the result of raised blood pressure and have you found anything to help with the pain.

Houswoea i think you have mentioned the gabapentin before i will mention this next time.

[jackiemxoxo]

I am glad you asked this question because I have been wondering it too. When I first got sick over a year ago, the doctors were the same way with me blaming it on panic and it took awhile to diagnose. I found the cardiologists to be the most unhelpful which was unfortunate because the heart rate is most measurable symptom of POTS. When I finally found a cardiologist that knew what POTS was it became easier. Lately, I have been feeling sharp chest pains that do not last long and pain in my fingers. I have been wondering what this is and if it is normal. I had a holter monitor about 2 months ago which just showed tachycardia but nothing too worrisome. It is hard because the monitor does not always catch your pain but hopefully you will have better luck. Update us if you find out any answers about this pain! Good luck!

[toddm1960]

I have these same pains, you're not alone at all with them. Not much advise about the pains, just try to relax as best you can. I've just come off 3 straight days of them, today is the first without any.

The only think I'd add here is to stay away from cardiologists and find a neurologist familar with POTS or dysautonomia. Cardiologist stick too much to strict heart function, and with POTS there's much more going on. I'll add right now not EVERY cardiologist is like this, but if you can you're better servered finding a neuro to treat you.

[E246]

Thanks Jackie/Todd/Lotus etc

Had another episode on friday which went on for 5 hours. lay in recovery position for 2 hours.

Can you tell me is it this bad for you?

I can't speak, don't want any noise and this time it was intense pressure in my chest - no arm pain this time. Like someone standing on my chest. At the same time my heart keeps peeking upwards then coming down.

I crunched half a bb and half a valium and this stopped surges going so high but it still went on. I could still feel the adrenaline in my body - it just was not having such an impact on my heart.After 4 hours repeated the dose and it started to come down.

Still cannot get the pots doctor to see me - says the referral from gp does not say urgent and wants to wait till after i have seen cardiologist.

Just feel i need some rescue treatment for these episodes.

[cindeebee]

Emma I get what you are describing all the time!!! pain in the chest, left arm right up into the neck....I actually get pain in the neck veins and feel like I am being strangled from the inside out....horrible feeling and I am always sure each time it happens its going to be the last.......but Im still here I have asked my cardio dr about this and he feels it is related to the high adrenaline, POTS and the possible MCAD I may have. I find the best thing that works for me is to take something that relaxes my system and I find after awhile things will settle down. Also do you suffer from acid reflux at all because believe it or not that stuff can cause wicked nasty symptoms!! even heart related symptoms. Maybe try taking a Zantac and see if it has any effect on your symptoms? I hope this passes for you soon! and just know you are not alone

Bren

Wow. I've been complaining about, what seems like, a tightness to my carotid artery in my neck. I have somewhat controlled hypertension, but when it's not and it's going up, I get all the symptoms of having a heart attack, from chest pain to a very weak left arm... have been to the ER many times... I now just play off those symptoms because "they" tell me I'm fine. If and when I ever have a REAL heart attack, I'll probably just chalk it up as another dysautonomia spell. SCARY, I know.

[lissy]

Well I just came from the ER today, I have been having more chest pains this month and this afternoon I had a pain go straight across my chest and cause tighten in my left shoulder and neck....They did a EKG gave me a small amount of fluid and did an xray. After a few hours my tachy while lying down went back to normal and they also gave me 4 chewable aspirin and said just see my cardio (which I have a appointment in 2 1/2 weeks.

The chest pain is so scary! I wish I truly knew nothing was wrong with my heart I would feel more comfortable.

Anyway I'm completely exhausted and I guess I will continue to take this aspirin once a day until my appointment.

[janiedelite]

I've found that chest pain that is relieved by lying down is probably POTS-related, and due to thoracic hypovolemia.

[E246]

I managed to access my notes and sure enough the cardio wrote " 1.Non cardiac chest pain 2. pain unlikely to be due to POTs" This then sits in my notes and next time i see a doctor it gets even more difficult for them to believe that these symptoms are down to pots. Am on Florinef now and this has really helped with the chest pain and the surges.

Thanks everyone who reassured me that they had same or similar.

[brethor9]

Glad to know you are feeling better Emma!! I wish Dr's would just admit they don't know enough about POTS before brushing off symptoms.....with POTS you never know! Not to say that you should never take chest pain seriously (you should) but so many of us suffer from it on a regular basis....we cant all be crazy!!

[SScott]

I'm kind of new to the POTS world. After 1 year and 1/2, I was finally diagnosed after doing a tilt table test. I was having all kinds of issues, more than just chest pain. I was first experiencing palpitations and flutters in my heart. In return my body would start having "fight or flight" symptoms. Palpitations would lead to chest pain that I felt sometimes in my sternum, got numbness in my left arm, aches in my heart, shortness of breath, brain fog, light headedness,  extreme fatigue, and sometimes sharp chest pain. When those symptoms were present, I could feel the nerves in my chest bothering me. It felt like a bunch of buzzing bees along my sternum. Having these symptoms have also triggered panic attacks, which are always scary.  I did all kinds of testing to rule out anything serious before my tilt table test. Chest x rays, holter monitors, blood work, and ECG. Everything turned up normal, except my ECG showed sinus rhythm, which they said isn't anything to worry about. I've also noticed eating bigger meals can trigger these symptoms (not sure of related or not). I do not think I have a severe case because I am able to stand on my feet for 8 hours everyday at work. It does, however, affect my everyday life  I was prescribed Midodrine which helped a lot but the side effects weren't fun. ( chills and constant goosebumps and a tingling itchy scalp)  

I also have hypothyroidism and currently in the works of finding the dosage closest to where I need to be. Also not sure if the thyroid affects the POTS.

I was just wondering what other symptom people with POTS experienced along with their chest pains. 

[Guest KiminOrlando]

Hi, SScott.

Many of us have gastro issues too. I think from there, it depends on what kind of POTS and if you have other issues besides POTS. For me, I have adrenal issues and thyroid. The problem with dysautonomia seems to be that it is an umbrella term and, while there are a lot of similarities, everybody is different and how we respond to treatment is different. Add to that the fact that you can run the same test on us on five different days and get five different results, from the same person. It can make it difficult to diagnose. 

I hope you find answers.

Kim

[kalamazoo]

I do have chest pain almost constantly, if I don't have pain I have tightness and pressure. It radiates into my elbow and my neck, when I first starting getting symptoms about 10 years ago I would frequently go to the ER when it would get back. I have also had percarditis . I have hyper pots. and let me say, I am so sensitive to food, if I eat large meals, high carb, high fat, high sugar I feel HORRIBLE. Chest tightness, head pressure, trouble breathing, stomach pains etc. I have changed my diet several times over the years but I eat a strict vegan gluten free diet with about 6 small meals, never large meals.  I also drink a TOOONNNN of water and low sodium as well. I recently had surgery for a kidney stone and ever since have been extremely cautious. diet is so important. 

[Taylor K]

This is validating to see. I have horrible chest pains but EVERYTHING the hospital has done and the cardiologist has done has come back normal munis the holster monitor showing the POTS (testing included: 24 hr heart monitor, EKG, CT, 24 hr urine, blood tests, x rays)

I don’t know what else to do. It’s such severe chest pain. It is on my left side and radiates to my neck and left arm. It is tight, pressure, stabbing, twisting, numbing pain that lasts for HOURS or days. 
trying a beta blocker to help and was prescribed Norco at the ER for severe cases. I’m trying to avoid the ER because all my cardiology work up was normal and the ER has always come up with normal results saying I have the lowest possible chance of cardiac emergency according to my blood tests. 

worse with exertion and doesn’t get better laying down  

im glad to know this is “normal” but sorry we all are going through it. If anyone finds help, let us all know. 

[Pistol]

Hello @Taylor K - welcome to the forum!!! I know the chest pain you describe very well, I have it all of the time too. Left sided, radiating up my neck and sometimes under my left arm, it feels like my heart is in a vice and is going to explode! --- All my tests always came back normal as well, despite the severe pain. Until 2 years ago when my cardiologist did a heart catheterization and found that my coronary blood vessels go into spasms, causing the pain. This is called Prinz Metal Angina. The same thing happens to my feet - they turn ice cold and numb - b/c the blood vessels spasm ( this is called Raynaud's Syndrome ). Both of these can happen from abnormal ANS reactions and therefore can be a symptom of certain types of POTS ( I have hyperadrenergic POTS which causes high BP from the constricted vessels ). 

What has helped me a lot with the chest pain and cold feet is calcium channel blocker Diltiazem ( it relaxes the blood vessels and lowers BP ). There are other calcium channel blockers that can be used, for example Norvasc. I also was on a nitroglycerin patch for a while ( relaxes the coronary blood vessels ) but it dropped my BP too low and I was dizzy and lightheaded al of the time, so my cardiologist stopped it. 

I also take a beta blocker but it does not do anything for the chest pain ( however it does a good job treating the tachycardia ).