prinzmetals angina

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I have had prinzmetal's angina for over 7 years. Information about prinzmetal's says that pain occurs at night while in bed. Well not in my case. I get angina pain in the day time as well at night. Does anyone out there get pain in the day as I do ? I get pain at anytime, when it is cold or when I feel stressed and sometimes activity brings it on. I am taking a lot of medication for it , can't be without the nitro spray. Am having a lot of bad days lately hope to have a few good days soon.

Because prinzmetals is rare I feel a bit lonely having it , even though there are people who have the usual angina. It would be good to talk to somebody who prinzmetals.

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  • Posted

    I was recently "accidentally " found to have prinzmetal angina, when I had chest and back pain all night long, went to urgent care and discovered my heart enzymes were 120 times higher than normal. They assumed a mild heart attack and did a heart cath, which is when they found I had this RARE form of angina. It often goes undiagnosed because it must be done through having a heart catheter. Mine is well controlled as far as pain is concerned, though I do find when I do strenuous things, I tend to have to sit down because breathing becomes a little hard, and FEELS like my heart is in a funny rythmn, though that is just the vessels spasming

    • Posted

      Hi caro,

      If yours is well controlled and you find when you do strenous things you get out of breath and your heart feels in a funny rythm ........that is consistent with stable angina. here where I live they won't do the provocative testing because of the high mortality rate, that's what I have been told by cardiologists, other people from accross the world say it is a relative safe procedure ??  I have asked 3 cardiolgists about this provocative prinzmetal angina test and all have refused due to the alleged dangers to the procedure..... that info in itself is rather confusing for a suspected PM angina sufferer.

      did they find any blockages with the angiogram ? I have a couple, one at 50 % LAD and the other at 60% RCA but apparently they aren't flow restricted.. did they pick your heart attack up on an ECG as well ? My ECG was normal but my troponins were raised to the extent that I had suffered a mild heart attack as well, they call this type an NSTEMI, where ECG is normal but trops elevated, I've had 2 NSTEMI's since 2012.

      I'm just curious thats all with how they came up with a rare type of angina when what you mention is classical symptoms of stable angina.

    • Posted

      I also have the prinzmetal angina . Beginning to think it isn't so rare !!

      my arteries are not blocked !! So it's the spasm angina I have . Weather effects me , stress , exertion . I gave had one heart attack and one suspected heart attack . I'm getting to the highest my medication can be . 

    • Posted

      Hi Brodie,

      Prinzmetal Angina according to cardiologists is pretty rare, however, talking to emergency doctors and your GP they all have their own opinions, Cardiologists just don't like to openly admit that a patient could be suffering PM angina because they can't find anything, they will only confidently diagnose it if your arteries spasms during an angiogram, however, I believe and I think a lot of cardiologists will use it as an excuse that any body part will spasm when a foreign object is inserted into it, If you can see what I'm trying to say ?

      Just a quick run down on PM angina, but as I have always said the laws of science isn't always right.

      It mainly occurs in young people, around the age of approximately 26 and can continue up to and over the age of 50. they know the cause but don't fully understand it, high cholesterol, as in herediatary and several other types of cholesterol conditions also can cause PM angina, the cholesterol eats / absorbs the nitric oxide that keeps our arteries and vessels smooth, with out the nitric oxide arteries will spasm. Coronary arteries are always clean / clear of any plaque, when I was first diagnose my arteries were in pristine condition, that was my cardiologists exact words, pristine condition. Attacks come out of the blue and at rest, either sitting while reading, watching TV, etc etc, can wake you from your sleep, almost rarely comes on under exertion (hence why it comes under the unstable angina category). It can also be a hereditary condition. Triggers can be cold weather, generally a cold puff of gentle wind to the face sets it off but overall cold weather is a big trigger, high emotional stress, extreme heat , smoking, caffeine and by illicit drugs like heroine etc etc .

      I too am on the highest dose that is suppose to keep this condition at bay but it doesn't, my retired cardiologist did tell me that my body will build up a tolerance to all of the angina medications including the GTN spray. my medications are Monadur120 Mg , Perhexiline 200 Mg twice daily, Nikorandil 20 Mg twice daily ( this is the only medication that is not at the maximum dose ) Cardizem 600Mg Daily ( that is divided up into 240 Mg and 360 Mg, either one morning or night, I take the 360 Mg mornings and the 240 Mg at night) Cardizem worked wonders until I built up a tolerance.

      As for the rareness of this condition in population terms it is very rare. I live in a low populated area of 496, 500 and I have been told of at least 12 other suffers of prinzmetal angina.

      prinzmetal angina doesn't usually cause any concerns for heart attacks but remember I said above  the laws of science aren't always precise, Like you I have had 2 heart attacks (classed as NSTEMI's) I have had several troponin rises in the last 4 months and I was told 2 of them were suggestive to another 2 events (NSTEMI's ). I do have mild heart disease but that is due to my weird lipids and it is part and parcel of ageing.

       

    • Posted

      mayo said percent of population have it. Japan is showing more like twelve percent. Our Facebook PA group is growing rapidly. Many on that group are first diagnosed after their first mi.

    • Posted

      Hi cher,

      Yes the Japanese have the highest incident rate (more prevalent) with prinzmetal angina, I believe they should be looking at some possible causes into prinzmetal angina in topographical areas, next on the list is African Americans

  • Posted

    I have suffer g with chest pains over the last 12 months I have been taken in by ambulance 3 times now with suspected heart attacks but it wasn't, I gave now had a angiogram which they say is normal but I still gave chest pains every day and when I go to bed at night, I have tried 2 lots of different medication which didn't work, I'm feeling like they are just giving me tablets but not finding out wants causing the pain, what sort of tests do I need to ask for because prizmetals angina sounds like what I have.  Any info greatly recieved this is really affecting my life now and I worry about the pains I have. 

    • Posted

      For Prinzmental the gold standard test is a stress test during the angio where they induce spasms to see if you're suspetible - this is how I was diagnosed in royal Surrey hospital in Guildford, UK.

      I'd enquire to see what they did during your angio

    • Posted

      They just did the normal angiogram, I didn't have a stress test with it, thanks for the info. 

    • Posted

      Hi there,  Are you in the US?  We don't do the stress test with the angio.  I believe they insert medication that will cause the spasm is you have PM, but I could be wrong.  The pain from PM is far worse than any heart attack. It is unmistakeable and crippling while it is happening.  

      It's a loooonngg process to get the final diagnosis. Because it is so rare, they have to rule out everything else first. It took me 5 years to finally get there. I felt like they thought I was a hypochondriac and very frustrated throughout the time. Stick with it. You know your body.

      They have probably tried Beta blockers, which will make PM worse.  Calcium blockers are what is needed.  They should do a stress test with an echo (this is where you have the ultrasound first, get on the treadmill to your max and quickly get an ultrasound done when you are finished. You will have 45 seconds for the second ultrasound, so it's a group effort!) 

      Hope you get a thorough diagnosis soon, no matter what it may be.  Best of health is a blessing. 

    • Posted

      Actually the gold standard for prinzmetal angina testing is an angiogram with 2 types of provocative medications, if your coronary arteries start to spasm when they inject this medicine they can definately diagnose you with prinzmetal angina without any doubts. As I have said I have asked for this test and I have been told that this test is not a safe option here where I am. Stress testing won't pick it up I believe, unless you are having an attack before you start and I doubt even then if they could pick it up as it doesn't always  show up on ECG's /EKG's  . prinzmetal angina isn't exercise induced like stable angina.

      Actually, sorry bit early in the morning for me, nima I don't think you would be doing a stress test with a catheter lodged in your coronary artery via groin or wrist would you ? To me that sounds dangerous as well, the risk of it falling out, tearing of the artery and the cardiologist wouldn't be able to tell anything because you are moving ? That's how I'm understanding your comment.....stress test with angiogram ?

    • Posted

      Hah - you're absolutely right, with the local anaesthetic and the tube up your arm it's most definitely not a good idea to do an "exercise" stress test smile

      The cardiologist and the consultant who conducted the angio called this a stress test - meaning they try to induce spasm to see how susceptible you are.

      In my case, my arteries were narrowed without any pain and they saw this straight away during the procedure, the stress test certainly sent my heart tracing and caused 1 or 2 level pain, minimal in other words - the GTN spray opened those bad boys straight up.

      And yes you're right they make you sign a waiver as 1 in 1000 is at risk or stroke or heart attack during this procedure.

    • Posted

      My Cardiologist said that after the Cardioversions done for my intermittent arrhthymia and the heart tests and angiogram he was going to say he was happy with Prinzmetal large and small vessel diagnosis rather than push his and my luck any further. He has put on a note no heart tests for the next 5 years... i sort of wonder if that means i have ot be a smidge more careful.......... 
    • Posted

      Not sure I follow? But I'd imagine it's best not to have an intrusive test for the sake of it more often than needed...

    • Posted

      it has been a rough year...just saying the stresstest wasnt going to happen becasue of the associated risk. He whentwithsymptoms and medication more or less working as confirmation of diagnosis...

       

    • Posted

      I see - well if you are pain free and living a normal life then happy days! 😃 In my case they wanted to know what had caused the NTSTEMI seeing as I am 34, don't smoke, not overweight and have no family history of CAD.

      But other than a few episodes after Cominf out of hospital which felt like I was going to faint/was having a pantix attack - relatively pain free on calcium channel blocker and statins.

      Count myself lucky and was a wake up call, quit my job in the city, exercise daily, meditate twice a day and try to get more than 3-4hours sleep which is what I was getting.

    • Posted

      Hi I'm in the u.k, I feel like a hypercondriac too, especially when the tests come back ok, we will see how it goes getting stressed definalety does not help! 

    • Posted

      Hi Andrew,

      The cardiologists that have consulted with me are thinking the same way although they haven't put any notes in about "no further  heart tests"  they have "apparently" put in my notes....Troponin must be taken each time I present.

      One of the professors of cardiology was telling me when I asked about this provocative testing, his reply was it's not a procedure we do here as it's dangerous and can actually have serious consequences, he went on to tell me that he performed them in France quite a time ago and one patients coronary artery just vanished after introducing the agent(s), he didn't tell me if the patient survived or not, he just said the artery just disappeared. the other cardiologists didn't offer any explanations as to why they don't do it , well they did say something, they said it's a dangerous procedure and not performed here, yet I read lots of people elsewhere in the world seem to of had this procedure, so I don't know....I suppose each country have their rules and regulations based on evidence for various testing procedures.

    • Posted

      more or less working was - pain reduced from 12 out of 10 down ot 8 out of 10 from 7days a week toa ramdom selection of 6 days....due to having ME an intermittent Arrhythmia ... well some things area achallenge... retired due to ill health... and slowly establshing a daily rota... the faining bits are the ones i hate the most... the pain is bad but that fadingout dizzy sick loosing touch feeling really hate it... but, not as bad as it was... so ...
    • Posted

      Glad you are still going! yup hearing those stories and others... i am glad my cardio takes the view he does, had my heart restaed enough times ta verymuch....  mine has the approach we know the problems so just treat when you come in.............. thatll do me....
    • Posted

      That doesn't sound good....have you thought about weighing up the side effects of the medication you're taking?

      I was in total shambles when I was taking everything I was prescribed and after seeing 3 different cardiologist and speaking to the old man (Doctor albeit not a cardio) I decided to stop taking half the pills theyd prescribed me (painkillers, sleeping tablets, anti-reflux pills, blood thinning, anti-coagulants, HIGH dose of statins and HIGH dose of calcium channel blockers and anti anxiety tables - i was a talking talking pharmacy!).

      Stopped everything apart From a small dose of the calcium channel blockers and minimal dose of statins, changed my life style and must admit I've never been better.

      Before that... Jesus I was getting dizzy just standing up, could barely walk to the toilet, would have a panic attack whenever I'd leave the front door and was constantly dizzy and did faint, albeit not often. And the chest pain/heart burn was horrific.. guess doctors have to cover their asses for litigation matters! I'm really happy I got conclusive diagnosis of my condition though, has left no doubt in their minds with regards to what they're dealing with and I've been able to self regulate my medicine intake.

      All I need now is an athletes pulse and I'll be flying wink

    • Posted

      Here in USA The gold standard test is coronary angiography with administration of provocative agent into the coronary artery. Usually, ergonovine, (methylergonovine or acetylcholine can also be used.  I have had the acetylcholine  challange multipe times. And when they gave me ergonovine for migraines it set it off as well. Also other meds like Beta blockers kick me in every hour. These all set mine spasms off horribly  Dicyclomine ,  Ergonovine , Methacholine, Metoprolol , Nebivolol Hcl , Ergot Alkaloids
    • Posted

      Yea beta blockers are a big no no when you have prinzmetal I was put on those in hospital but quickly taken off
    • Posted

      Yes that's the gold standard but here where I am....Australia... "apparently" it is considered to dangerous of a testing procedure.  I've had 3 cardiologists tell me that it's not a procedure done due to high mortality rates, that's what they tell me anyrate, after what the professor told me what he has witnessed with this procedure in France and the USA I don't think I would like to have it done to be honest, I'll take their word for it via my symptoms. They have always kept me away from Beta blockers.

      I'm just wondering if in fact it is as dangerous a procedure as they say, did you encounter any problems during your testing procedure ? I have been told that the GTN infusion doesn't always reverse the spasms, as we all here probably know that any ways when we have a severe attack, my cardiologist also told me that he's witnessed coronary arteries just disappear when the introduce the provocative agents,as I said in a comment further up, he never did tell me what happened to the patient. 

    • Posted

      Mayo is very carefil with how much of the acetylcholine they put in. They increase it gradually. All the times I had it done they Nitro right into the artery reversed it but it did take soem time and several doses of Nitro. We had hndreds of patients under go the test at Mayo and none that I had met had issues other then of course sever angina. I woudl assume a large dose rather then several small does coudl in fact close of the arteries. My cousin Joe died from a complete occlusion with a spasm. And when they had given me ergonovine for migraine it and Metoprolol & Nebivolol Hcl all three reacted much worse then the test with acetylcholine. I suspect if htye had introduced very much ergonovine my reaction would have been much worse. Perhaps AU uses ergonovine.

    • Posted

      Had a sacre when i saw one of the other GP in our local practice... he gave me something for the migraine i was having... OUCH!... in a lot of pain and was really ill, had ot go to hospital and the A&E docotr said what happend so i told him of my morining... he took the pills out of my coat pocket and chucked them into the bin, that will make you feel better heres some morphine in the meantime... a nurse retrieved the pills looked and dropped them back in... bit later on when my wife arrived he explained to us what had happened, he also had been on to the GP's to point out the error of their ways

    • Posted

      What country are you in (never heard of anything Like this happening?!) and what were they tablets?
    • Posted

      in the UK and it was caused by the GP not reading my medical notes but just treating the migraine... as to the tablets... cant remember- it was a while ago now...
    • Posted

      Hi, since you are discussing about spasm angina testing i will describe my own experience. They did the test on me on july 2014. They used progressive infusion of ergonovine and the result was positive (I had clinical and electrical evidences of angina) I didn't know about how dangerous could be. Well, in fact I didn't know anything about variant angina at that moment.

      The test experience itself had been more stressful than painful. Angina reversed by fast NTN infusion and bed lean back to avoid fainting.

      Two years later I would say that even if the test confirms that you have prinzmetal, when doctors deal with a patient without stenosis problem and anginas without clear electrical evidences (ECG) they start considering that the problem is not exclusively on the heart.  I would ask to them: Where do you suggest the problem is? On the head?

      Sorry to say that a clear diagnosis doesn’t solve frustration when we struggle Prinzmetal’s…

    • Posted

      Yes it is so frustrating. I have delete with the issues 22 years. Dec 2016 I had to go to ER at a hospital I have had to be in ER for nitro numerous occasions. They have a red falg on my chart that tells them I have the Coronary artery spasm and htat my cardiologist & the Head of thier Cardio team have written up statign it is angina due to spasm proven in heart caths and that I shoudl nto wait in waiting room and be placed on Nitro drip. But in December I had a physician I had severla tiems before and htey did not get the drip goign of rover 2 hours and I lept askign for Nitro due to the angina was at 10. Well he was nto even goign to do the second trop and I told him to. And sure enough the delay caused heart attack. Soem physicians think they are God and that no other PPhysician knows more then they do even when it is the head of their own Cardio team. That is a very frustrating part of this diseases. But teh physician in qustion now has a formal  meical reprimand on his record. The director of ER services is goign to handle the situation. But my husband refuses to take me to that ER if that physician is on duty.

    • Posted

      I feel a little bit comforted to see that is a common issue. I do not mean the disease but how some doctors deal with it.

      During this month the angina has gone worse. I had a stress test with angina pain at maximum effort but the day after I had an angina again when I was just walking. It happened more or less at the same hour confirming the typical circadian cycle of this angina (I had a third one, next day at same hour)

      Last week I had an angiography that confirmed perfect, clean arteries and stent also perfect.

      They tried double nifedipine dose that I couln’t handle and did not solve anginas. Finally I was prescribed with ranolazine (ranexa).

      I told the cardiologist my concerns about this drug because is only set for stable angina but not for Prinzmetal’s.

      Well, he got completely defensive telling me that I’m not cardiologist (obvious) and that science move forward and so on…We missed the appointment arguing about nuances and finally he fired me saying that the time was over.

      The only loser of this situation it’s me that is the one suffering angina. I’m looking for clarification, advices and if none of them are possible, just comprehension…

    • Posted

      Well physicians that do not like patients asking questiosn is oftne an issue. I am so lucky right now my team of physicians are all ok with questions. Physicians that cannto handle questiosn either have a god complex or are inscure.  I have some freinds with this disease that Renaxa did help. I tried it and it did not help me. If you have a new incease in angina look for triggers.  I am really touchy to medication changes. I trigger with hypoxia, yachycardia, bradycardia, irregular beats, caffine, allergy reaction, some meds, cold, severe stress (like buring my ssiter), to much activity. And of course I can be sound asleep and have angina.. My combonations of Verapimil 180 morning, Nifedipine 30 mg evening, Imdur 120 am and 30-90 in afternoon if needed, spironolactone, L-arginine 3000 3x day.  When I have angia on top of this my routine is crack NIFEdipine 10mg liquid gell under ongue, then if continues nitro spay 5 min apart up to three tiems and second NIFEdipine 10mg liquid gell . If this does not hold me I go to ER for Nitro Drip.
    • Posted

      I have tried to identify triggers. My clear triggers are:  Exertion, cold, stress and postural change: leaning forward or leaning down (your back on the bed or seat). Coffee is not so clear.

      But over all those triggers there is a previous condition that induces anginas.

      I mean, I can do some exercise (145 ppm during 2 hours) skiing, taking coffees, working with some stress without suffering anginas. But in some time periods any of mentioned trigger, even a soft exertion, produces angina. Of course I deal also with spontaneous angina without clear trigger.

      It’s very interesting your comment about med changes. Since it’s also one effect that I have feel on me. Any med change exacerbates angina and changes his pattern. It seems that angina looks for a relatively dropping in CCA content on the blood to arise.

      In relation of that I also dealt with short acting 10mg nifedipine and after some days I noticed that it induced angina after 1.5 hour after taking it. I suppose that nifedipine goes quickly to the blood and after a while, concentration on blood starts to drop. This fast variation of CCAA concentration on blood killed me.

    • Posted

      They won't use either of the provocative agents at here, all I keep getting is to dangerous, high mortality rate etc etc, The more I think about what my cardiologist had told me about the coronary artery disappearing when introducing the provocitive medication, I was wondering for the severe spasms that is why that artey disappeared and that's why they won't do this procedure here , or perhaps they won't do it on known severe "suspected" artery spasms  sufferers, the , what's the best way of saying it, diagnosed by symptoms, I mean I know it is severe for all of us but you will get people that have it nearly everyday for years.

      Yes cardiologist told me that they put the nitro straight into the artery but he also said it doesn't always work as nitro doesn't always control prinzmetal angina , I don't know if you have experienced this in a bad attack the GTN after about 10 sprays does nothing at all, it may relieve the pain for a minute if we are lucky.

    • Posted

      Your cardiologist and mine must read the same books....Igree GTN  is not an effective cure  or treatment for some of the time, some events get relieved for minutes and then respray respray respray............  other times its phew first time....  The main medications have reduced the number of events and often the severity but....
    • Posted

      smile sounds like it, even some paramedics have told me , the ones well versed in coronary artery spasms have said  we will even get immune to the other medications over time. I'm sure at times I can feel those arteries spasm sometimes, ....ouch.... . If  I don't get bad spasms sure the GTN will get rid of it but it's those severe attacks and as you say respray repsray respray, by the time I have called for the paramedics I would of had 14-22 sprays during the event, and because I am pretty well immune to the stuff now it doesn't even touch my blood pressure for that amount of GTN.

    • Posted

      The gel capsule nifedipine  only last a short time. I also take 30 mg extended release that is a 24 hour one
    • Posted

      Yes when all other meds fail I do the short acting nifedipine & Spray when that fails wie do IV Nitro to calm it down. They leave me on it for 3-4 hours and when I was relaly bad they coudl nto take me off it for 5 days. The IV Nitro delivery is affective in stopping the attacks. The reason they leave me on for a whiel is to let the spams stop for a whie so that the irrated artery relaxes adn then it will calm down. The long acting agents Verapimil , nifedipine  etc do help but at tiems most of us break through and need the Nitro to stop the attack and allow the artery to calm down.

    • Posted

      Yes they used to do that with me but stopped , to them it was taking to long to work I think, either that or there were never always any beds available, also depended on how many GTN sprays I'd already had beofre arriving which was normally anywhere from 14 - 22 before the paramedics arrived. I have been told to call an ambulance if the pain hasn't gone within 30 minutes, because it's only spasms and they reckon spasms won't hurt you ( as in a heart attack ) so they think, I've been caught twice already with NSTEMI's. I usually wait 40  or so minutes now as I am in emergency far to much , I have to call for an ambulance as no one is ever home when I have a severe attack.

    • Posted

      My cardiologist had me see a pulminologist. He knew about PM and assigned some testing. Unfortunatly, I got busy and didn't follow up. Need to get on that. But that could be a possibility.

      After reading so much, i see that doctors really do have a hard time with clear/complete diagnoses. Each of us has PM with combinations of other problems.  I don't have anything related, and I was still hard to diagnose. 

      As I have said before, she took 5 years to rule everything out. 

      I don't know what dye they used in my angiography (the last resort test,) but after it was all over I had an allergic reaction to it. If it's not one thing, it's another. 

    • Posted

      Some of us (prinzmetal’spatients) deal with other diseases and others do not.

      My aunt (not consanguine) has prinzmetal’s and also problems with breathing system.

      In my case I have no other related disease as far as I know. A cardiologist sending you to see a neumologist can be also an attempt to dodge the issue since he cannot accept that he cannot handle it.

      In my last visit to cardiologist he suggested me that some episodes that I identify as anginas probably are not.

      It’s sad because I don’t blame him for not healing me. Neither he nor anyone else can totally handle this disease. The tools to treat our illness nowadays are very well stablished.

    • Posted

      I went into FMD & Angina  attacks in March. mar 8 had to call ambulnace on way to Cardiac Rehab. ER did the right things but when they coudl nto nitrate me down the Cardiac on call even though he read the red flag on my chart told them to disconnect the Nitro & release me with Angian and BP's up to 195/110. Luckily the ER oc called My cardiac doc talked to her partener then her both said do nto release me with Angian and the high BP's. then he called the head of Univ Cardio who is also my past Cardi doc and he todl him same thing as well as my other prior Cardio who also said ame thing. SO he did manage to get anothe doc to put me in until the next day when they couls notrate me down. Next evenign 3 more attacks but stayed hoem with my mex meds. Nect am 7 am a My cardios office went into it again ahde called hospital and said I was on way  after max meds we can do out of Hospital. This one is our teaching hospital adn they ran all the students through to see me and learn about the diseases. in Fri-Tues with Angioplasty on my renal arteries. Still unastable they called Ambulane from cardiac rehab monday and had to be on IV Nitro for several hours again . Yesterday mixed out meds every hour for three hours and Cardiac said if I had one more attack she wanted me in ER again. 2 of the EKG's did show infrior & anterior infarct as well as arterial flutter. Today I only had two attaks. So we will try for EECP tomorrow and Cardiac recovery on Fri. Hoping now that BP's are nto hitting as high as 220/180 will calm things down. The last hospital also took the opportunity to also train th new physicians and nurses. So am glad that the upcoming physicians will be more aware of Coronary Spasms and Fiber Muscular Dysplasia. Praying we all see a better respons eto our medical conditions in the future.

    • Posted

      Hi Andrew,

      How are you doing these days ? I've been catching up on a lot of reading in this forum and with the description of most I wonder if majority actually have AF ( atrial fibrillation ) and different kinds of arrhythmias ? Bit I suppose then again it would show up on all their ECG's but no-one has clearly stated their ECG findings in regards to their specific symptoms.

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