E246 Posted January 14, 2011 Report Share Posted January 14, 2011 Hi this is my first post.I have had pots for 7 years, it has been intermittent, and was finally diagnosed 4 weeks ago.Can anyone help with my immediate problem - I suffer from terrible chest pain and it is not muscular but definitely the result of some sort of strain on my heart. I often get it when I stand for too long ( well minutes) even when my heart rate does not go too high. Sometimes it goes down my arm.As I have only just been diagnosed the doctor's initial assessment of this pain was that it was muscular but said she would do some sort of exertion test next week. This has always been my presenting symptom - chest pain-which is probably why the pots was missed for so long. Until it made me collapse repeatedly I was not aware my heart was even going fast and probably prolonged episodes of this tachycardia has been a cause of the pain. I am seeing Professor Newton at Newcastle Royal Victoria Hospital. is there anyone else in this area with pots?And has anyone had severe and continuous chest pain and had an explanation.Thank you. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted January 14, 2011 Report Share Posted January 14, 2011 It was smart to bring this up to your doctor. It sounds like she might be running a stress test on you next week. That is pretty standard when someone complains of chest pain that comes about with exertion. I have chest pain with my POTS as well. What helps me is a very low dose of carvedilol (coreg). The coreg acts as a beta blocker and lowers my heartrate a bit, but also counteracts some of the adrenaline surge that I get on standing. However, it also lowers BP which isn't helpful by many folks with POTS. Quote Link to comment Share on other sites More sharing options...
E246 Posted January 14, 2011 Author Report Share Posted January 14, 2011 Thank you for response.I have been on Ivabradine but that gives me chest pain as well.I can't take a beta blocker because it takes my heart rate to under 50I am recovering from this episode of POTS but this pain which seems like angina and stops me moving around even when my heart rate is more stable.How can you have a stress test or treadmill test when you have pots? Just the thought of bringing on this pain by exerting myself is upsetting.Does anyone else have this problem? Quote Link to comment Share on other sites More sharing options...
janiedelite Posted January 14, 2011 Report Share Posted January 14, 2011 I've also taken nitroglycerin when the pain was really bad. But this was prescribed after I'd been in the hospital for chest pain and elevated troponin levels. When you do the stress test, you will be connected to an EKG that looks at 12 different areas of your heart. First, you'll lie quietly so they can get a baseline EKG. Then they stand you up. I informed the tech that my heart rate would spike ahead of time. When I got onto the treadmill, my cardiologist came in and actually did the rest of the test. You will let him/her know as soon as you have an increase in chest pain, and he will check your BP and look at the EKG which will be running continuously. If he sees any abnormality in an area of your heart, he'll stop the test and will have a better idea of how to treat you or what other tests to run.When I did my stress test, I didn't have any abnormalities in my EKG except for the postural tachycardia. If you do have coronary artery constriction during the test, the EKG will catch it. It can also catch other heart problems, which might lead the doctor to order more tests. Whatever happens, I would rather have a chest pain episode during this test where it can be documented and studied. Also, if it's serious in nature then you'd be in the perfect place to have it treated! Quote Link to comment Share on other sites More sharing options...
Lovebug Posted January 14, 2011 Report Share Posted January 14, 2011 Hi Emma! I too have been gettting chest pain alot lately. I have always had chest pain from GERD but this is different. I see a cardiologist for my Dys and he told me he'd keep a close eye on my heart due to family history of heart disease & I've also had high cholesterol in the past. As a matter of fact, I just had a stress test yesterday and I'm really paying for it today. But like thankful says...better to have it checked so that anything serious can be addressed. BTW, if you are unable to stand or walk then you can have a chemical stress test done (called a Lexiscan). It stresses the heart chemically for a few minutes while hooked to the EKG and then a reversal agent is given to bring the HR back down. Either way, you need to have your chest pain investigated. Quote Link to comment Share on other sites More sharing options...
E246 Posted January 16, 2011 Author Report Share Posted January 16, 2011 Thank you for your response. i have never used a forum before.I realise that my problem for years has been the chest pain. This is what has taken me to the doctors. It has been ignored or put down to ridiculous causes like hyper ventilation.Ii have never been offered pain relief.Yesterday my husband phoned the doctors asking for pain relief. As soon as you say you have cheat pain, and because no one understands pots, they wanted me to go to hospital. In hospital with this new diagnosis of pots ( 5 weeks) they really listened to me about the pain.So I tried gas and air - no good. Nitroglycerine tablet under tongue - made it worse and HR shot up. 5mls morphine helped a little then intravenous paracetamol. Unfortunately they did not give me anything for the nausea which developed as soon as I got home and I spent the next 4 hours curled up - chest pain abated but incredibly sick.I hate taking tablets and my experience generally seems to be less interference is best. But my reaction to the nitro does suggest that it is not angina.I could have stayed in for tests and I would really like to get to the bottom of the pain but I knew as today is Sunday nothing would happen for a day and I am seeing the specialist on Tuesday.I knew pots had stopped me walking but i did not realize how ill it would make me feel so ill. And it is so unpredictable. I run my own company and I don't know what to expect from one day to the next. I am hiding my illness from other people. i have got very clever at working out how far I can walk and maneuvering situations so that I can sit down. Most of the time I keep going despite the pain.Does anyone have similar experiences or know what causes the pain. Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted January 16, 2011 Report Share Posted January 16, 2011 When I was reading the links that Mack's mom/Julie provided I did notice that chest pain was one of the things people with Hughes Syndrome mention a lot - the idea is that tiny clots are compromising circulation.It was interesting to read Dr. Hughes blog as well, and to find out that they suspect the condition might actually be relatively common (1 in 500). And it affects women way more than men. Quote Link to comment Share on other sites More sharing options...
houswoea Posted January 17, 2011 Report Share Posted January 17, 2011 You and I should be friends!I also get debilitating chest pain... it usually feels like I could learn to deal with the POTS if the chest pain wasn't so unbearable. I used to hide the health stuff from people too. Whenever I went to the ER, they would just say they didn't know or I was crazy, but the people around me were too scared to let it go.I had a echo and an ekg and all seems well. My doc just recently prescribed me some pain medication called gabapentin. It's been helping a TON!Also, Ibuprofen usually helped some with the chest pain. other pain meds didn't help me as much (I couldn't tolerate them) but maybe they will help you?Good luck! Quote Link to comment Share on other sites More sharing options...
E246 Posted January 17, 2011 Author Report Share Posted January 17, 2011 Thank you for replies.i would love to be friends with you but do not know quite how to do it.What a relief to be talking to others.I have had chest pain all day and not been able to do much.My heart is very slow at the moment - often below 50 when i am relaxed. I think this causes pain.And the pain kicks in again at the other end sometime when my HR only at 80.Basically it seems to be there all the time.Gosh i just had an SVT whilst writing this - jumped to 154 for what felt like ages but only probably 10 seconds. It has left me feeling really shakey and sick.2 months ago I was swimming up and down in the fast lane.I have awful neck pain too and headache at the back of the head - does anyone else suffer with this? Quote Link to comment Share on other sites More sharing options...
Amber Posted January 24, 2011 Report Share Posted January 24, 2011 Sorry I can't help with an answer but I sure can sympathize. I have been to the ER 3 times this year for chest pain and shortness of breath. It is worse with exertion...to the point of passing out. It is not like syncope from pots. Its definitly something going on in my chest....it is so tight and squeezing...like a bowling ball on my chest. During some of these times I've also had random tachys up over 160 even laying down and even with large doses of BB. I often feeling like my heart is pounding even up into my throat and head, regardless of whether my hr is fast or not. Sometimes it has been under 50 as well and like you, both fast and slow seem to hurt. The pain often spreads to the arm, jaw, back etc.Sounds like a heart attack or embolism but, except for a mildly elevated troponin level, my tests came back normal. (ECG, ECHO, Xray, bloodwork). I keep telling them I am worst with exertion but they only ever observe me laying down. Even my stress test was done laying down, using a medication to simulate exercise, consequently I didn't get the pain and so it came back normal.After these episodes I am debilitated for weeks to months. I can barely walk and get out of breath with simple activities. Now if I was a 60 year old man maybe the docs would take it more seriously but as a 37 year old woman with a history of pots, CFS and Fibro they seem content to tell me everything is fine and to go home and not to worry about it. Duh! Like I want my life to be months of bedriddeness punctuated by visits to the ER. Anyway, just wanted to say you are not alone..... Quote Link to comment Share on other sites More sharing options...
nmorgen Posted January 25, 2011 Report Share Posted January 25, 2011 Hi,Sorry to hear about your chest pain. I also have chest pain, but I was told that mine is Costochondritis. I had my stress test about 6 months ago, and I used the bike instead of treadmill. You may want to ask if they have a bike you could use instead, or as others have said you can do the drug stress test. I have to say it took me a few weeks to fully recover and feel better after the stress test, but its worth knowing that your heart is in shape. Good luck and I hope you get to the bottom of your chest pain. Quote Link to comment Share on other sites More sharing options...
Serbo Posted January 30, 2012 Report Share Posted January 30, 2012 So i had chest pain on exertion last night, doing my nightly power walk and after about 1.5 hours I increased the pace. Soon after i got a sharp pain on the left side of my chest, i reduced the pace and built back up and again the chest pain.To me this is cardiac chest pain if it's on exertion, so going to go to a cardio on weds and get some tests done.Beyond a stress echo what other tests would be of value in a POTS patient? I've had cardiac MRI's and stress tests in the past. i know structurally there's nothing wrong with my heart to cause the pain and having had arrhythmia's in the past i know i'm in sinus rhythm.My pain doesn't spread anywhere, it's not crushing, and i'm not out of breath, and it quickly goes away when i take the pace down. My best guess is that it's something to do with a blood pressure irregularity during exercise, but i'm dumbfounded here. Thanks Quote Link to comment Share on other sites More sharing options...
Christy_D Posted January 30, 2012 Report Share Posted January 30, 2012 My son gets it mildly occasionally, but last summer had it so severe he was in tears. We were on vacation and took him to an urgent care. The doctor gave him a shot of prednisone and it calmed it all down within half an hour. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted January 30, 2012 Report Share Posted January 30, 2012 I actually woke up with chest pain this morning; I also can get pressure in my chest and on my right side with pain down my right arm. Stiffness in the neck and back of head, as well. It is always worse when I am symptomatic. It doesn't matter if I have tachycardia or not. I am nauseated and dizzy today, as well. I have a Mitral Valve Prolapse diagnosed by echocardiogram, had a stress test, EKG and Holter monitor, too, but haven't had any other abnormalities. I also take a beta blocker. The first one I was on would lower my heart rate, too much, Atenolol, but I'm also on a med for high blood pressure, so my doctor put me on a longer acting one that is relatively new. It's called Bystolic; there is no generic for this medication yet, but it is amazing the difference it has made for me. I would get all the tests you can to determine your best course of treatment. Quote Link to comment Share on other sites More sharing options...
E246 Posted January 30, 2012 Author Report Share Posted January 30, 2012 Hi Serbo,I wrote that post a year ago and i still do not know what causes the chest pain. My doctor still admits they do not know what causes it but it is common with POTsSometimes it is sharp and others it is like intense pressure and i think my BP is probably spiking. It gets worse as I stand for long or exertion. You might get a 24 hour BP monitor and of course an echo.I have started taking a quarter tablet of Fludrocortisone and for the first time have seen a massive improvement in my symptoms. So maybe it is to do with hydration.Hope you can get it sorted out - it is always worrying when you get chest pain. If it is a new symptom get it looked at. Quote Link to comment Share on other sites More sharing options...
Serbo Posted January 30, 2012 Report Share Posted January 30, 2012 thanks Emma, I would be happy to accept chest pain on exertion as being "normal" with pOTS if they could just say so and describe what happening Quote Link to comment Share on other sites More sharing options...
cindeebee Posted January 31, 2012 Report Share Posted January 31, 2012 I have Hypertension along with my Neurocardiogenic Syncope and intermittent POTS. I used to think I was having a heart attack all the time. Been to the E.R. many times, only to be sent home and the dr's telling me all the tests came back fine. I get chest pain, headaches, jaw pain, neck/carotid tightness, palpitations and my left arm gets so weak that I can barely lift it up. It used to be scary, I guess it still is, but I've learned to accept it, knowing I have Dysautonomia! Still trying to find a doc in my area to help me understand this syndrome. I've been to too many dr's who have just given up on me. Most, I'm finding out, haven't ever heard of Dysautonomia... they just want to label us with anxiety and put us all on antidepressants!Hang in there...one day we'll have answers... I hope! Quote Link to comment Share on other sites More sharing options...
Serbo Posted February 1, 2012 Report Share Posted February 1, 2012 I went to the Cardiologist today. Had an allergic reaction to the gel used for the eccho but thats a whole other story!Heart is slightly big (5.8cm i think), but told nothing to worry about. Told to continue exercising but take it down a notch if i get chest pain. Have been offered a Cardiac MRI with adrenaline or similar if i want it, or a modified stress test with eccho.Been told its very unlikley to be angina in some one my age (26), and based on the pain i described.Once I have my allergies under control I will go for the modified stress test i think. Quote Link to comment Share on other sites More sharing options...
Serbo Posted February 1, 2012 Report Share Posted February 1, 2012 I have Hypertension along with my Neurocardiogenic Syncope and intermittent POTS. I used to think I was having a heart attack all the time. Been to the E.R. many times, only to be sent home and the dr's telling me all the tests came back fine. I get chest pain, headaches, jaw pain, neck/carotid tightness, palpitations and my left arm gets so weak that I can barely lift it up. It used to be scary, I guess it still is, but I've learned to accept it, knowing I have Dysautonomia! Still trying to find a doc in my area to help me understand this syndrome. I've been to too many dr's who have just given up on me. Most, I'm finding out, haven't ever heard of Dysautonomia... they just want to label us with anxiety and put us all on antidepressants!Hang in there...one day we'll have answers... I hope! Thanks Cindee - Reluctant to belive chest pain on exertion is just one of those things, without expalination of why Quote Link to comment Share on other sites More sharing options...
bunny Posted February 4, 2012 Report Share Posted February 4, 2012 I get chest pain occasionally and haven't been able to find a cause for it. I've gone to the ER numerous times and they're never able to find anything. It will come on out of nowhere and stay for a few minutes to over an hour. The pain itself can be quite bad, enough to stop whatever I'm doing. The only slight correlation is that it generally happens later in the day and at night. Wish I could pin down more factors bit they have been elusive. Quote Link to comment Share on other sites More sharing options...
E246 Posted February 5, 2012 Author Report Share Posted February 5, 2012 Hi,Serbo - i get chest pain from standing or walking or being upright which is a type of exertion if you have pots. My doctors just says they understand it happens but cannot explain it. As a man i think like Rama said your symptoms are taken more seriously and in the US there seems to be a lot more testing. I was told i would have a stress test from the beginning but later told it would make me too ill and so it would not be done.So i still have unexplained chest pain that stops me and no answers. So would be very interested to know if you get any further. I have in my notes that my chest pain is not cardio and not pots - but not from someone who knows about pots. I think this was because it continued even when i was reclining - but after a bad episode or too much exertion it does last.Bit frustrated with lack of interest by doctors as much as anything. Keep me posted and good luck trying to get more answers. Quote Link to comment Share on other sites More sharing options...
CC101 Posted February 7, 2012 Report Share Posted February 7, 2012 Hi Emma. I am pretty new here too and although I may not have the answers, I sure can relate to you. I have been given NO answers to me chest pains and have just kind of accepted it as a symptom of my POTS, even though it is a very scary symptom. I have done 2 EKG's, an echo, and a stress test. They did the EKG when I complained of my chest pains at the hospital .. everything was fine. Cardiologist did another, everything was fine. As I continued to complain, he proceeded with an Echo. Everything was fine. Then, a whole new chest pain started to happen. On a Thursday, I had such a Jolt to my heart (It felt EXACTLY like it was my heart) and it was such a strong jolt that I dropped to my knees. This happened again the next day so I called in with my concerns. I couldn't get in for a stress test for another few weeks and was really beginning to worry. I had an episode to where I had to sit lying still breathing carefully and slowly or else it felt like my heart was being constricted with pain. It took a half an hour for it to pass. Went in for the stress-test .. everything was fine. It still has me so worried, even though I havnt had an attack like that since. SOMETHING has to be causing that right? Well according to them everything is fine. I take metoprolol er succinate & am wondering if that is causing any of it? I have trouble when laughing big, it seems to have a stress effect on my heart. It is scary, and I hope an answer is given soon. Please let us know anything you find out. BIG HUGS to you & hope you are doing well ♥-CC Quote Link to comment Share on other sites More sharing options...
E246 Posted February 8, 2012 Author Report Share Posted February 8, 2012 It seems if there is no dardio reason for the pain then it is dismissed. Still wondering if it is due to autonomic neuropathy. Not even sure i know exactly what this means but i think thee has been some damage to the nerves in the chest/heart region. Quite often my hr is ok but i still get chest pain. I never ignore it but perhaps i should. Quote Link to comment Share on other sites More sharing options...
CC101 Posted February 9, 2012 Report Share Posted February 9, 2012 Emma that is exactly how I felt. That if there was no visible or obvious reason then all is fine. That is why I kept going back for tests because the pain I have experienced does not feel as if I should ignore it one bit! Another frustrating & unanswered concern. I will be sure to let you know if I ever find anything else out. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted February 9, 2012 Report Share Posted February 9, 2012 hi everyone, i'm really new here - just posted my 1st entry moments ago, and browsing the topics i found this one - it hit home right away.one of my main, major problems is my debilitating chest pain. I've had so many tests done - even before being diagnosed with pots - and until now none of the drs i've seen (and i've seen over 20 in the ER, plus cardio, neuro, internist, family dr) have been able to give me a reason or to help me alleviate the pain. Testing wise: blood work, ecg's, echocardiograms, 2 stress tests, ct scan of lungs, abdo, pelvis, head, head mri, chest x-rays, lung capacity (or so) testing, holter 24 h, loop monitor 2 weeks (were there more?! - i might have missed some).i've been told the following (by the drs) - it's anxiety, go home and relax, it's GERD take antacids you'll feel better, it's all in your mind, you just want attention, it's costochondritis (i've taken so many different NSAIDS and for so long but none helped). The one thing that helped but gave me horrible side effects so i stopped it was oxycodone. Now i'm trying to manage it with cortisone (pills) and tylenol 3, but they don't seem to help. I have a heating blanket that i occasionally put on but it makes breathing uncomfortable and it doesn't always help.my pain is not brought on by effort or by standing for too long, or anything in particular. I could wake up with it in the middle of the night, or in the morning, i could be enjoying a conversation with someone and it's showing its ugly face.how do you cope with this? I'm scared and i feel like calling for the ambulance every single time i get an episode.believe me I feel your pain and frustration and desperation, and i'm desperately looking for some answers.thanks and sorry for ranting.alex Quote Link to comment Share on other sites More sharing options...
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