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

    Do u think I can have this problem considering I'm so young tho? 😕 And can I die from this disease? 

    • Posted

      Dear Alex38985,

      I was diagnosed with it when i was 24. Have had 1 major and few minor heart attacks since. Not an easy road but with daily exercise, diet control and lifestyle changes it can be managed. This disease has an excellent prognosis. Do not worry. 

    • Posted

      How common is this condition? I've had a full cardio work up n so far everything normal. Drs think I'm crazy now 😢

    • Posted

      Well, i was having some chest discomfort on and off, mostly at night. Tried to shrug it off. But one of the attacks got quite bad..., started sweating and got quite breathless, prompted a visit to the ED. So happenened my ECG was abnormal. Did some subsequent imaging of the coronaries, proved to be normal. So i was just treated with some nitrates initially. Then came my major cardiac event, had a full blown MI and my angiogram showing fairly decent vessels, 50-60% narrowing. Which prompted the vasoconstrictor med that caused my vessels to spasm and almost triggered another MI. 

      In terms of incidence i really do not know how common this is. Probably under diagnosed if you ask me...

    • Posted

      it is quite rare, but may well be under diagnosed, and is very poorly understood, virtually neighbouring hospitals will often have very different views on it sometimes the cardiologists in the same hospital will too. Because it can only be treated not cured (yet) it isn't liked by medics in general as the ycant fix you and a common view is it is the patients fault. I am on several forums and the treatment varies from very appalling through horrid to a few good medics and by a few I am talking around 20% seem able to work with the illness and patients. I am now lucky but previously was one of the 80% and it is a horrid fearful time. it is worth printing off all the info on Prinzmetal and Micro vessel spasms and going in with the information to your GP and then Cardiologist. explaining your symptoms match and so... but it is not easy to be recognised... one or two (or so) cardiologist have likened it to being a zebra in a herd of horses.... walks talks looks behaves like a horse but it isn't... 

    • Posted

      I had some dull chest pain at night in particular, and a few episodes where I thought I was having a panic attack/fainting....

      Then one evening I woke up, chest felt funny, I turned a lovely grey colour (according to my gf( and vomited. I was 34.

      Long story short was taken into hospital and after many scans and ECGs all were fine... the blood tests showed I had a heart attack.

      The reason they found out, through an angiogram was tightened coronary arteries which medication is all a distant memory.

      I've even stopped taken the medication the last 3 months and no symptoms whatsoever.

      Either way get it diagnosed and get on the right medication. 

    • Posted

      So what ur trying to say is that this condition is very rare and not many drs are aware of it ?...
    • Posted

      So medication caused ur spasms? And I'm 19 and I've had the pain tons of times and get rushed to the hospital. Ekgs echos holter monitors ct scans xrays and lots of troponin blood work. All normal ..

    • Posted

      no I was put on medication to stop the spasms from happening again, but have since stopped taking the medication and no problems (so far)
    • Posted

      How old r u and where r u from ? I live in California and idk if they even considered this disease here..
    • Posted

      now 35, and from London. I'm sure they have considered it.

      If you don't smoke, don't take drugs and have no other high risk factors I suspect you just need to speak with your doctor and consider your options.

      But I'm pretty convinced they are aware of the disease in California.....its rare but not unknown took my doctor about 5 seconds to work out what was going on during my angiogram after the MRI showed a heart attack, blood showed tightened troponin levels but ECG was normal and heart muscle showed all clear through an echo.

    • Posted

      Well I've seen 3 cardiologist so far n none have even thrown this condition out there .. they say I'm too young and healthy. They throw it on severe anxiety

    • Posted

      Hi,

      Yes it is a rare condition and yes some doctors are unaware of the condition, I have had lots of younger generation doctors ask me " what is prinzmetal "  they understand the angina part but not the prinzmetal, I think they are taught the different terminology like vasospasms, coronary artery spasms , unstable angina, etc etc  rather than by prinzmetal angina.

    • Posted

      Well I've throw vasospasms out there and they've never considered it. Due to it being incredibly rare. 

    • Posted

      Hi,

      Obviously you have presented to the emergency department ? have you ever called an ambulance during an attack ? Surely they must of given you a spray under the tongue, they call it GTN ( Nitrolingual pump spray ) . depending on how you present with chest pain, this is the usual standard treatment to see if it eases off the chest pain. If you had this spray did it help relieve the chest pain ?

      If you are up to cardiologist number 3 I think it might be time to go back to your GP and walk him / her through your experiences and if you think it's not panic / anxiety related be sure to emphasis that. Maybe a second opinion from another GP is warranted and if they suspect prinzmetal angina they will refer you onto a cardiologist who deals with that regularly.

    • Posted

      Yes I have called the ambulance many times but I was pregnant at tat time. Even now when I've been to the er they have. Ever offered me that spay or tablets. I do have severe anxiety and panic but it all started because of my symptoms. The first time I had a panic attack was when I was pregnant I was on high blood pressure medicine. My blood pressure has always been on the lower side but my gyno ob dr prescribed it to me for my contractions. I was always in preterm labor and nifedipine is known to stop contractions. Well my blood pressure ended up dropping and I panicked. After that I started having chest pains that got worse and worse within time. When I get these chest pains I get arm numbness sometimes and I get dizzy and short of breath. 

    • Posted

      Hi,

      Now I'm sure the emergency department would of considered this with your presentation but with your recent pregnancy and giving birth has DVT's or Pulmonary Embolism ever been looked at ? I'm sure it has. Sorry but that's all I can come up / help you with, by starting again with a second opinion from another GP if you haven't already done so then move onwards from there, naturally when the chest pains get unbearable to call for an ambulance, you are bound to come across a paramedic or ER doctor that knows all about prinzmetal angina, not much comfort I know but that's how they found mine, via an emergency doctors diagnosis and after extensive testing cardiology concurred with the diagnosis.

    • Posted

      Yes ive had 2 chest ct scans and a d dimer blood test 
    • Posted

      Was Prinzmetals all cardiac test will come back normal 99% of the time there is a stress test specifically for prinzmetal but it is often fatal. cardiologist like to say the only way to prove prinzmetal's is with pictures but the odds of them being in your heart with a full of tack is slim-to-none at best there is a circumstantial method of diagnosing prinzmetal if they switch you to calcium channel blockers take you off of the beta blockers if at that time the angina reduces you have either coronary arterial spasms or you have prinzmetal it took me a year and a half to get them to listen. Don't give up unless your attacks are hospitalizing you at this point you're fine you have time but don't give up study learn educate your cardiologist

    • Posted

      Take some stuff for acid reflux and indigestion....... it’s not normal for somebody young even if they eat like s**t and smoked for ten years to be having any type of angina. I thought I had it too cause I was experiencing the same symptoms expecially at night and it turned out it was just acid reflux. It could also be anxiety 
    • Posted

      Take it from an ex sufferer of anxiety for 26 years, the chest pain is completely different, hence the emergency department visits. Doctors need to learn to think outside of the square, just because you maybe 13, 15 or even 30, angina can happen to any one at any age, yes we all know that these ages are all to young but it does happen. The laws of average/science or anything else are not always right.

      ?I didn't eat like s**t as a youngster but still suffered from indigestion/reflux, they had a look down in there with the camera and couldn't find anything that would cause the reflux.

    • Posted

      Sooooo what you’re saying is I’m wrong and you’re right ? Aniexty can present itself as practically the same as a heart attack ...... the fact that you felt the need to respond to my comment over anybody else’s on a post that hasn’t been used in over 6 months kinda just tells me you like to argue and use your own experiences as some sort of anecdotal evidence to disprove my thoughts on what it could be. Taking something for acid reflux won’t kill them .... the fact that they also have anxiety Also kinda makes it look like it’s anxiety .... now if you want to actually have a constructive conversation be my guess but I don’t do that pass aggressive bs 
    • Posted

      Garren, you raise an interesting set of points-

      ?1) Anxiety present differently from both Prinzmetal and Microvesel spasms, it feels very different and has different effects. 

      ?Anxiety attacks are a stress reaction and work in a number of different ways and the stress originator is different so, having a heart attack can cause anxiety and indeed is noted by paramedics now as part of their treatment ie they ask patients how the yare feeling and respond to "doom" responses honestly where they used to hash over with fingers crossed (recent day conference on this issue made incredible reading) Anxiety effect are similar in feeling and effect but when you have either a heart attack or major / minor spasms of blood vessels you quickly learn the difference. However I do now always take GTN with anxiety attacks as they often (usually) lead to spasms, However spasms attacks do not always lead to anxiety attacks.

      ?2) whilst angina is rare the younger you are the likely hood of it being a spasm attack and not a blocked blood vessel increases the younger you are. That is if you have angina young then it is liklier to be a spasm type than a blocked artery type. HOWEVER blocked blood vessels is possible due to clotting issues sickle cell or other genetic difference, Also some people do not cope well with Cholesterol and so higher %ages remain in circulation longer leading to potential for deposition.

      ?3) there are a number of membrane genetics which predispose towards endothelial damage and clotting or endothelial damage and spasms as well as disease damage a couple of form of Arthritis also result in blood vessel damage.

      ?4) as a senior level coach I am trying to get a cardiac programme set up to allow and enable a yearly (ideal) or at least two yearly heart ecg etc tests to be done. So many young players have died of sudden cardiac failures of various types. Some of these have been shown to have come from spasm episodes and while under intense exercise have proved fatal. Some have been shown to be heart damage due to over exercise at a young age some due to diet and a number unexplained.

      ?From the various forums I have participated in and continue to do so the misdiagnosis by medics saying oh its just reflux etc is very high, and so far in 2018 has lead to 3 (three) deaths.   one of these deaths was a person who was a campaigner for Prinzmetal but on her last visit the doctor much as you said above said no its just an indigestion anxiety attack here are some antacids, Sadly the doctor was very wrong and a major heart attack ensued. A high %age of doctors don't know about understand or know how to treat spasm anginas. However thankfully it is changing and more and more conferences are showing what happens and how it can be treated and diagnosed. the Diagnosis is very challenging and difficult to achieve and posses some risk to the patient. For example the tilt test is recommended not to be used on spasm angina patients, but one had it done just yesterday, it caused fainting and fitting.... Just because you don't understand the condition do not assume you are right and say oh take antacids you will be fine.... oh and just for info taking antacids whilst on Calcium channel blockers is not recommended by GPs etc... Again all this is for info and I hope you will take the time to think on it and then react ... I look forward to your reply.  

    • Posted

      Nowhere did I say I was right ..... nor was the person taking calcium channel blockers. I made a suggestion, if that makes it so you guys feel the need to come out of nowhere and attack a guy cause he made a suggestion then this is a pretty sad forum. 
    • Posted

      Honestly looking at her profile it looks like she just has really bad anxiety 
    • Posted

      I believe this site to be here for only one reason. We all have a condition that

      1. The symptoms read like a series of guesses.

      2. Some Dr. are now thinking it may be more that one condition with similar symptoms and processes. This again can lead the patient to believe the Dr. are unsure and confused.

      3. If anyone thinks an attack has to last less than 40 minuets I pray you’re not a Dr. my worst to date lasted 6 days and resulted in an “large area Transmurial infarction” (short translation I should be dead.

      4. The time (world wide) for presentation to diagnoses is An abysmal 6 weeks to 3 years.

      5. The fatality rate is 80% higher among undiagnosed sufferers.

      6.. It is still controversial BUT  symptoms such as digestive tract disorders are common because the digestive track is also lined with smooth muscle cells.

      7.  In my humble opinion anyone who thinks they may be suffering coronary symptoms of any type should never be discouraged from shaking diagnosis whether they have it or not 

      8.  No one on this site have I ever heard say someone was either wrong or right only encouraged the patient to seek further diagnosis.  so for you to troll of sod which is so serious and attack one of which members accusing him of telling you you were wrong is about as silly as it gets if you can’t have an intelligent discussion about this condition and the possibility of secondary conditions in please do not comment . 

      Anyone reading this is not that believes that they may have similar symptoms it’s not acid reflux until the doctor says it is, It’s not arthritis of the rooms until Dr. proves it. Nor is it prinzmetals until it is diagnosed.   And believe me when I tell you that last one is difficult for me to say, I suffered from prinzmetals form the age of 15, I was diagnosed at 55,  The other in s**ttiest part of this disease is that it likes to show up and go away which change to make a patient look like a fool in front of the doctor .  See you read the symptoms and you find out that the medical books on one hand say is prince metal on the other hand say send your patient home because there’s nothing wrong..

      The first person that you trolled, Samuels Is probably the most experienced poster that we have on this particular site. And as far as your comment to Andrew22534  he never said you were wrong .  He answered you point the point is any good patient on this side would because we except the fact that sometime sometime searches acid reflux or upper long spasms can mimic Prinzmetal angina.   So speaking purely for myself if you’re going to troll those posting about a medical condition which is serious and potentially fatal I suggest you go find another shot to troll we don’t need that here we don’t need trolling at all what we need is serious answers and serious questions. 

    • Posted

      Not at all, I could be far from right, for all I know you could be right, Anxiety is not the same as a heart attack, you or the sufferer convinces themselves it's a heart attack so therefore because you are convincing yourself it's a heart attack or some kind of heart problem you are forcing  confusing(if you like)  the para sympathetic and sympathetic nervous system, it is generally the reverse though, only because of our thought train.

      ?I don't like to argue, why would I want to argue with people experiencing the same things, we are here to learn from each others experiences. I merely made mention and from personal experience and a lot of people here have experienced it as well, the doctors will automatically say reflux or panic/anxiety, also stated, I have been there and done that, I use to suffer panic/anxiety for 26 years, in fact I checked my diary and it was 28 years of that dread disability, I have trouble still with agoraphobia, apparently this is very common amongst heart attack victims. You came on here and basically told the person to try this and that in regards to reflux or it could even be anxiety related, did it occur to you that this has already been discussed with the original poster and they were seeking other peoples experiences ?  If I misread or misunderstood you I apologise, but to me you came across assuming that we all suffered what you suggested.

      I'm more than willing to listen to you especially if you have any new information on prinzmetal angina ? Do you or have you suffered anxiety ? you have stated that you had reflux, and as I said I'm glad they found your problem.

    • Posted

      No no no, I'm afraid you have it wrong and it's because of me, there is no need to get cocky with other forum users, we are all more than happy to chat or discuss things in a respectful way. All in here have suffered greatly because doctors fail to recognise, especially in this day and age specific symptoms that could be quickly and easily diagnosed if they listened to their patients.

    • Posted

      I didn't attack, just stated a few facts.. if you don't like facts then?.... sorry you don't feel comfortable discussing this, also I haven't come out of no where... as a long term sufferer I am only seeking to pass on hard earned knowledge. However when someone says go take some indigestion aid it s probably that # yes it is a tad irksome as you get the same in Hospital sometimes and as you have seen with sometimes fatal result's.... No matter how many times I reread your original post is still reads like the statement is you either aren't normal or you have reflux.... but even so I responded factually not aggressively... sorry if I have hurt your feeling by so doing but...   to be fair if you had put that in a post to me I would have been pretty cross Also re reading Samuels post I don't think he was aggressive either.... just saying my opinion and as for saying to your expert opinion from reading her profile she just has bad anxiety is a bit judgemental.. reading my profile wouldn't give you my daily life either... 

    • Posted

      I want to clear the air on this. how would you react when all of us here have actually been diagnosed with this horrible condition. here's what you said and yes I did react, perhaps I did over react.

      " Take some stuff for acid reflux and indigestion....... it’s not normal for somebody young even if they eat like s**t and smoked for ten years to be having any type of angina. I thought I had it too cause I was experiencing the same symptoms expecially at night and it turned out it was just acid reflux. It could also be anxiety "

      Now honestly tell me how you would react as a diagnosed sufferer of PM angina ?

    • Posted

      as I said I think I would have been pretty cross if that had been directed at me, especially in view of what has happened recently to someone I was a friend with on facebook... I did try to be factual but .... I find many conversations on here informative and good discussions. but was somewhat surprised to see  "its not normal", well of course it isn't normal... but reigned myself back in and tried ot explain. I hope I explained at least a bit...

    • Posted

      Garren, as a thought you do realise that spasm angina ie Prinzmetal and Mirco-spasms have very very little to do with eating habits and diets don't you? it isn't a blocked blood vessel its a vessel that spasms closed. Again I am not being aggressive but senior medics once they hear the word angina close their ears as well. we have to be careful not to use the angina word and keep to the spasms words...  we generally don't have blocked blood vessels we do have blood vessels that spasm closed - somewhat akin to cramp... but in a blood vessel...  

    • Posted

      I thought you explained it very well, better than what I could of done. Yes when I first saw it I shook my head in disbelief, the person he was referring to and judging by the original posters comments they were diagnosed with PM angina and I'm sure this person had been what we all of had been through at first, just being told  it was indigestion or anxiety, I copped it for several years until I had my first heart attack, occasionally  to this day I will get a couple of young doctors say it's anxiety, that is until they read my file, I have even had some young ones even ask me what prinzmetal angina is. 

    • Posted

      This is person hasn’t been diagnosed with it tho ...... I can understand if you actually were but this person hasn’t been to my knowledge and now  whether you guys want to acknowledge it or not are being pretty passive aggressive about it. I’m sorry I’m not as knowledgeable about the subject as you, I threw my 2 cents in there and now I guess I’ll just continue being ridiculed by you guys  

       

    • Posted

      I am offended now... at no point have I ridiculed you... and in fairness to us, we (certainly I have) have read his other posts and they are fairly typical of Prinzmetal and or micro spasm... however, you point was originally take antacids your be fine it not normal to have...  we explained that was not fully correct and why.... even now you have expressed no surprise at the death of someone being treated incorrectly or indeed a simple ok I hadn't realised that was possible or indeed oh that's interesting so why don't you people think just taking antacids is correct?... any of which would have led to discussion, but no you have read his profile seemingly not read his other posts and tell us all that antacids are the cure for spasm angina and then wonder why we don't like it...  Again I ask - nicely- do you know the difference between spasm angina and angina? have you read the symptoms of spasm angina and realised why we have advised as we have accordingly, or have you just gone I was cured by antacids so you all will be too? because that is how it seems. His other notes about Arrhythmia etc etc do suggest a more complex situation than indigestion...... if you cant take constructive feedback which is what we have all done till now and that's because I find your comment offensive, is give the reasons why we think you are wrong and given you factual information, which you don't seem to be either reacting to or noting...which is odd....... perhaps you could explain therefore why you think my comments don't apply to your discussion please? at least then I can understand you obviously think I don't know what I am talking about?

    • Posted

      This is not ridicule , it is education. If you’ll listen instead of crossing your arms and saying I did nothing but put in my2 cents maybe you would find that snap judgement about conditions like this really bites hard at our histories. We have all suffered at the hands of Dr. , families, and  friends who’s good intentions only slowed the process of finding out is it or isn’t it Prinzmetal’s

    • Posted

      just some info - typical for Prinzmetal and micro vessel  symptoms, waking up with no reason but in panic attack,- occurs usually at rest, can be stimulated by large meals. Feeling faint dizzy (reduced circulation) sweaty reaction cold and clamy. heart can race .... if you read the posts its these that come up a lot.... Pregnancy would have the same physical effect as a large meal... 
    • Posted

      I don’t care if you’re offended now I wasn’t even talking to you to begin with also I never suggested taking antiacids would treat him I said try it out .... if you had actually been paying attention you would know it’s a she not a he. Now please leave me alone cause my conversation was with samuels not you .
    • Posted

      You seem to be the only person here that is really taking my words out of context and it’s not needed or wanted 

       

    • Posted

      So being supplied with information isn't helping you learn about spasm angina then? this is a team forum hence we all tuck in to help and advise... and yes, I do know but sadly having ME too doesn't help with spell checking...so only obvious errors get rechecked (redlined ones)  and so far I haven't taken any of your words out of context, however if you don't wish to learn about spasm angina I will leave you to it...  Have a nice day... 

    • Posted

      also as a small point that you missed I did make comment on her pregnancy... I do know it is very unlikely a bloke will get pregnant...

       

    • Posted

      Andrew is absolutely correct. I’m not sure if your browser has some knd of filter , but Andrew was not the only one who tried to educate you on OUR situation, so did Samuels as well as myself. I do aolagize if you have  secondarily been offended. Please try to understand what you said to Alex cuts us all very, very deep. In some nations US included diagnoses usually involves  Long periods of either long periods of psychiatric treatment or accusations of being a hypochondriac so for anyone to come in and suggest that she should try your instructions rather than that of her doctors even though her doctor is still getting it wrong is beyond the pale. This is a support group for those of us who have Prinzmetal angina, Prinzmetal syndrome, micro spasms, vascular  spasms, or arterial spasm’s.  It would appear to me that you didn’t read any of this site or any of the conversations before offering medical advice to someone who could potential have a life-threatening disease.   The better part of valor is discretion, the better part of Knowledge is learning
    • Posted

      I am offended now... at no point have I ridiculed you... and in fairness to us, we (certainly I have) have read his other posts and they are fairly typical of Prinzmetal and or micro spasm... however, you point was originally take antacids your be fine it not normal to have...  we explained that was not fully correct and why.... even now you have expressed no surprise at the death of someone being treated incorrectly or indeed a simple ok I hadn't realised that was possible or indeed oh that's interesting so why don't you people think just taking antacids is correct?... any of which would have led to discussion, but no you have read his profile seemingly not read his other posts and tell us all that antacids are the cure for spasm angina and then wonder why we don't like it...  Again I ask - nicely- do you know the difference between spasm angina and angina? have you read the symptoms of spasm angina and realised why we have advised as we have accordingly, or have you just gone I was cured by antacids so you all will be too?

      no where did I say take an anti acid and you’ll be fine .... words taken out of context 

      but no you have read his profile seemingly not read his other posts and tell us all that antacids are the cure for spasm angina and then wonder why we don't like it ..... again words taken out of context I never said nor suggested this even remotely 

      or have you just gone I was cured by antacids so you all will be too?........ agaisnt taken out of context I was talking about Alex and nobody else. Alex has not been diagnosed with pm angina so I suggested a different diagnosis on my own experiences .. I do not have pm angina so I never suggested it would cure pm angina I suggested she might have acid reflux or Anxiety not pm angina. 

      So yes you tell yourself you weren’t taking my words out of context or even putting words into my mouth in this case ... whatever helps you sleep at night bud 

    • Posted

      My first Prinzmetal attack which resulted in hospitalization, was at the age of 15.At the time Prinzmetal angina had been described.  But not yet recognized as a disease that could be treated or even understood . To this day although Prinzmetal angina is thoroughly covered in the classes for cardiologist most cardiologist wouldn’t know Prinzmetal angina if it squeezed their head. (  Only because I have not yet been corrected on the site) I do believe I am the longest survivor with this disease I have had it for 42 fixing to be 43 years I’m lucky and blessed by God otherwise I would have long since been gone . The number of times I’ve heard doctors tell me it was indigestion, Arhythmic tachycardia. Or Magical cholesterol clots while I had perfect cholesterol levels in my blood stream I’ve been told it all and indigestion was the one thing I was told at least three times a year.
    • Posted

      Take some stuff for acid reflux and indigestion....... it’s not normal for somebody young even if they eat like s**t and smoked for ten years to be having any type of angina. I thought I had it too cause I was experiencing the same symptoms expecially at night and it turned out it was just acid reflux. It could also be anxiety 

      ​your first comment and copied, I think it speaks for itself.......the only could bit is at the very end....and yes it is anxiety but brought on by.... but hey whatever floats your boat.... 

    • Posted

      It won’t let me like  your post  twice. I read about “report this post” but “perfect post” is it listed as an option for me to check off.
    • Posted

      Yes cause I was going on the assumption that she didn’t have pm angina ..... Would you not suggest a antiacid is somebody was having acid reflux. And yes having angina that young isn’t normal. The fact that I said it could also be anxiety just shows that I’m not certain about the acid reflux diagnoses hence why I threw out another possibility.... I’m still not sure why you keep on trying to suggest I’m trying to treat pm angina with anti acids when I’ve said multiple times that’s not the case along with pointing out she hasn’t been diagnosed with pm angina. At this point it kinda looks like you’re just trying to start trouble by making things up about stuff I didn’t say. 
    • Posted

      Thank you Bishpick................ it is interesting and frustrating when at hospital and at home we get the same ...... I am lucky with my home support..... very lucky... but even my GP a while ago when treating my migraines gave me a vasoconstriction drug,,,I was lucky and hospital were fortunately very quick acting (my cardiologist was on...  yet three days later  at the same place and of course different cardio...  I now carry a card describing the conditions...... its much easier to hand over, My GP was very upset and very apologetic..... but so often its closed minds Well done you on keeping yourself going so well. WOW that is a long time, gives me hope... I am a late starter at 50.... hoping to make the ton...... Look forward to hearing how you do this... Samuels is also an interesting source of info and I tend to follow you both.... research and learn.... thank you for your kind words...
    • Posted

      Actually the point Alex was raising was she (I checked) has chest pain and anxiety attack and has done so for 6 months.... so no I wouldn't prescribe antacids... she said she wakes up with anxiety attacks... nope wouldn't prescribe antacids for that either, she also makes reference to having low then high blood pressure, wouldn't prescribe antacids for that either.... in fact I can see no real reason to suggest to her taking antacids... apart from your own personal experience  of chest pain reflux. And thus you trying to put your symptoms on another person. . I haven't yet found where she says she gets acid reflux...... However we here do know the feeling of acid indigestion and hence why we have said what we have.  so no I wouldn't have suggested at any point taking antacids to this person ....

    • Posted

      sorry Low  blood pressure then "dropping" blood pressure not "high"...

    • Posted

      Lol you’re doing the same thing tho ..... using your own experiences to try and diagnose pm angina. I don’t know if she has it but none of the things she suggested would stop her from taking an antiacid in case it was acid reflux. I too have anxiety and thought it was either anxiety or angina ..... doctor said he thinks it might be acid reflex ...... so I take an anti acid and it helped. The fact that you’re trying to make a big stink out of me suggesting the same thing is beyond absurd. You don’t know what’s wrong with her period so me making a suggestion isn’t wrong nor does it mean people like you in the pm angina club can get on her and mock everything I say cause you think you know better. 

       

    • Posted

       The point is she came to this website because she suspected the symptoms may meet the criteria for spasms Andrew tried to help and so did Samuels What makes us more qualified than you to do this we have been through this exact set of symptoms with the exact same type of people  as you who wants to dismiss the combination of symptoms .  Since almost everyone here or at least very few of them were actually diagnosed by doctors and most were diagnosed by themselves and they brought it to their doctors. So no we do not believe that it is simply indigestion and we do not believe the making the suggestion that it is simply indigestion is doing anything but potentially putting her on a cardiac table with a camera crammed up her artery . So if you don’t mind please stop we have ask you to stop many times that you continue that to me tells me you’re trolling our side most of us have problems with stress causing attacks, the last thing we need is someone like you accusing rebel rousing and just being a General jerk.
    • Posted

      yet she has at no time mentioned gastric problems and frequently said chest pain etc etc etc and you cant see the difference because?.... and so as she posted on an angina page asking angina people for advice .......... and if you can show where I mocked you?  I only provided facts and descriptions.....

       

    • Posted

       And just so it’s said. one last thing if we are wrong the worse she’s done is had an argument with her doctor, if you’re wrong she could die .
    • Posted

      Will you please be quiet ....... I don’t care what you have to say if you have such a problem with the things that are being said feel free to stop posting and forget about it. But no you guys keep on posting even after I’ve requested to be left alone already and you keep on pushing the subject. This conversation never concerned you you were never apart of this conversation you are not wanted in this conversation if I could block you I would cause you’re annoying now leave me alone 
    • Posted

      You don’t need to have gastric problems to have acid reflex I didn’t even know I had acid reflex and yes acid reflux can cause chest pains ..... mine made me and my doctor think I was having a heart attack. 

       

    • Posted

      now will you let it go or do you need to be like a little kid and have the last word everytime. I’m tired of you people and your passive agreessive bs please leave me alone and stop commenting ..... you people leave a dam email everytime you comment. This has gone on for far to long and the original conversation was with Samuel not you two .... now let it be and leave me alone 
    • Posted

      I'm shaking my head here in disbelief with you. I am assuming you are referring to "Guest" and her comments ? unless you have clicked on the wrong "reply to " option under names ? They clearly state that they suffer from prinzmetal angina and was querying the rest with coming on these boards to seek some help or comfort from other sufferers.

      ?Another thing no one here is mocking you, you are digging your own hole in that department, you are being educated in a friendly way by several others that suffer this debilitating condition. I'm starting to regret even replying to your comment, you are taking everyones replies way out of context, yet you accuse us of taking you out of context. read this carefully.

      " Take some stuff for acid reflux and indigestion....... it’s not normal for somebody young even if they eat like s**t and smoked for ten years to be having any type of angina. I thought I had it too cause I was experiencing the same symptoms expecially at night and it turned out it was just acid reflux. It could also be anxiety "

      ?Have  you read it, read it again, now what does your opening sentences say ? case closed...... you wonder why we are getting upset with you. I'm guessing you, yourself are a 15 year old perhaps younger just trolling forums like this to cause trouble. If you don't want anyone's advice or share your experiences in a respectful forum, then I would highly recommend you move on. How does that sound "

    • Posted

      Well converse away with me !! You're doing the same with us, every time you comment you are leaving us emails, we could be talking to someone that actually does need some real information or describe their symptoms or experiences with doctors and we could be genuinely comparing experiences / notes.

      ?If you are not going to be mature enough to speak to us in a respectful manner then don't bother trying to chat with me.

    • Posted

      I’m no 15 year old I’m 28 .... and I don’t know what your talking about guest .....I’m not trolling, you guys are just getting upset and showing it passive aggressively. If you don’t want to respond then fine don’t respond. I don’t want to talk to people who can’t even tell when they are being passive aggressive. 
    • Posted

      You youself said you wonder why youre getting upset with me  that shows that you being upset with me is clearly notable in your eyes ..... well I’m not aware why you are upset with me I made a suggestion and every single one of you took it personally ... why you took it personally instead of just minding your own business I have no idea but I made a suggestion on my own personal experiences and idk but it must have upset you that it wasn’t the same as your suggestions. I’ve already discussed with Andrew why there’s nothing wrong with my original comment I made two different suggestions one was acid reflux which I said she should take some anti acids ..... I also said having angina at her age isn’t normal. It’s not ..... then I said it might be anxiety also a possibility and a understable one seeing as doctors will question that too along with acid reflex. That’s what my doctor did with me and I said the same thing to her. If you don’t like my response then just don’t reply back and leave it at that. If you honestly can’t see where I’m coming from then there’s no need in containing the conversation now leave me alone 
    • Posted

      But there is something wrong with your original comment, it's as plain as the nose on your face. you didn't re read your original post did you ?

      Yes I apologise, it was late last night early hours of the morning when I responded to you and I mi read who you was actually referring to. This young lass came in asking questions, all concerned offered good and sound advice and then what 6 months later you blunder in and say this . "Take some stuff for acid reflux and indigestion....? " How do you expect people to react to that ?, see how you aren't comprehending, listen just leave it, you're not worth the aggrevation,  you'll have us all in emergency with stress induced coronary artery spasms.

      ?Yes you have shared your own experiences and I expressed my acknowledgment of that and said I was glad that was all it was for you and that the reflux medication helped you. Also what you are failing to comprehend is that we ALL have experience "ohh  it's just reflux " or "Nah it's panic/ anxiety" when clearly it wasn't.

      ?See you admitted to it as well in this comment after denying that you said you never told her to take it . Quote

      ?"I said she should take some anti acids ..... ?" Unquote.

    • Posted

      I think you better look up the meaning of you comment of "passive aggressive." you're displaying it in every comment you make.

    • Posted

      unless you have a valid related condition and would like some , support, help or even advice in regards to it I'm not going to reply back with your flimsical comments, you obviously don't understand what we are trying to convey to you in regards to your original comment. 

    • Posted

      And now you’re being condescending.... whatever dude goodbye hope you don’t have a heart attack anytime soon 
    • Posted

      Hi Samuel, Bishpick, Sorry Both, I have given up on Garren. I don't believe he is capable of taking responsibility for his actions and he wont (not cant but wont) see that his advice could have fatal consequences. His statements to a person on a forum about heart issues (and in other places) ignoring her symptoms in total and persisting with a we are all wrong and he is right and we are just being nasty to  him is a failure on our part. Obviously somewhere we failed to explain something properly and frankly I am not sure I can be bothered to think of any other ways of dealing with such an unpleasant individual. What does worry me a lot is that the advice he gave here will be repeated elsewhere with possibly fatal consequences, as I have seen on a Prinzmetal forum elsewhere, I just wish we would have changed his view a little and so potentially saved a life or certainly saved someone from a lot of upset. I don't think we will get any message through to him. Personally I fond that very depressing.  He probably also belongs ot the group of people that think all ME people are malingerers...Sadly he also doesn't seem to understand that a forum is a group discussion not individualistic. Therefore I have now blocked him. Thank you both for being supportive here and I hope we can help other people who do need support as we and many others on here do. It is one of the things I will be bringing to the patient forum with the NHS group about how to give advice to patients family and the medical services. BHF have already amended their advice twice in 6 months thanks to a small group of us working with them so hopefully working with the NHS teams we can introduce more of a change there too and stop this oh you have an upset stomach thing a lot sooner. Yes there should be an examination and tests  but when so many of the other boxes are ticked (as they are here with he person in question) then any treatment should be concurrent. I have gained from this discussion and will be carrying this information forward. I have printed off this discussion for use with the NHS group and hope to be able to show how fixed some thinking and advice can be in concurrence with other events. (just to note all this will be staying within the NHS not for public consumption so no data rules will be breached) simple thing like tilt table tests being used when heavily contraindicated by pots, Beta blockers being advised when high ST indicates Beta blockers would be harmful, and of course the old upset stomach  when they cant see the spasms occurring (and we know how hard they are to spot) It has made me very aware of the information approach being very much needed, a symptom chart and as a recent cardiology conference showed the duality of approach but more assuming it is spasm than assuming its not is very much needed. The conference was actually very damming of the assume its not  approach and estimated a shocking level of life loss and life change due to poor acceptance of spasms because as noted here its rare... a lesson in education and a lesson in whats needed. I am very glad this happened and will use it accordingly to input into the service. So I suppose in some way I am grateful to Garren in forcefully demonstrating why the input into diagnosis is needed and why the decision tree that Kaski et al are developing is needed along with the patient decision tree that "we" are working on Thank you both,.... oh and garren for showing whats needed.  

    • Posted

      Hi Andrew,

      ?Yes I gave up on him when he last posted a comment, now calling me condescending, It is pretty sad when a person has a reaction like Garren's, I certainly hope in other forums that he may frequent are a bit more educated in different conditions and can correct him, you're absolutely right Andrew, I'd consider him dangerous when giving out advice. I have heard a lot about your NHS, some say they are fantastic while others say they need a complete overhaul. My new GP sounds like she has a very strong UK accent and I tell you what she has been nothing but thorough compared to my previous GP's, we have set aside my angina and chest pain, she says we know what's wrong on that side of things and nothing much can really be done any further until something takes a turn for the worst, I'm extremely lucky because I like us all take the GTN spray, but if that doesn't continue to work after 6 sprays I use a lower end pain reliever, Endone and that gets rid of the pain, I had to get a script for it when she took me on as a patient and she said she doesn't prescribe Endone to anyone except under dire circumstances ( I'm only guessing on the exception of dire circumstances) but she agreed that in my situation that I do require it and would continue to prescribe it, it's a controlled substance here as I'm sure it is world wide and she monitors it very strictly. I've had to use it more frequently in the last week, I had a bad reaction to an iron infusion and the pain in my knee joints is becoming unbearable, it's like I have done a round with a Stating, same side effects although uncommon with an iron infusion, and of course I had to be one of them that had a severe side effect from it.

      ?Keep up your good work Andrew, it's always pleasing to know that people are taking an active interest in something like this and trying to educate the Medicos a bit better on these rare types of conditions.... job well done and I commend you for it. 

    • Posted

      Sorry that should of been....... Done a round with  Statin.
    • Posted

      Thank You Samuel, I hope your GP does help to better medicate or help you achieve a bit more comfort in life! sounds like she is one to keep. For me garren was dangerous because his advice has already killed this year the person on another forum had CCB's but it was being overloaded by the antacids (out competed ) and so spasms happened leading to a heart attack.... So yes his advice was dangerous and potentially fatal. For me when thee people tell me I have made an error I would look into it and ask them why and learn, not keep on with the same dogmatic approach. Anyway.... we are going back into a cold spell and I am not looking forward to it!!!! the last few weeks have see a lot of almost drinking GTN at times and of course additional arrhythmia... as well as the ME kicking up a notch or three...  I like snow , and winter but this year I am almost desperately looking forward to spring... All good wishes, keep in touch...- Recently heard that New Zealand counts beekeeping as a skill shortage... was very tempted......

    • Posted

      Just for your info  yes that is dangerous. It has killed (at least) three people this year all of whom in hospital and the A&E team treated with antacids (1) and acid reducing treatments.(2) all three died from heart attacks due to their spasms not being treated. the one was on CCB and so the calcium of the antacid out competed the CCB effect and so their spasms worsened causing a heart attack, so yes your advice is dangerous and if you aren't learning you should... oh CCB calcium channel blocker

    • Posted

      You know I truely wasn’t trolling before hand I wasn’t ..... I saw Alex’s original post and I made a recommendation that my doctor made for me that helped me and I suggested the same thing to her. I’m not knowledgeable in the subject of pm angina or angina in general let alone heart attacks ...... if you guys are really knocking me for that then it’s not me who’s the one who’s trolling. But since you guys pushed it this far I guess I’ll just start being a bother now ... I asked you people to drop it, clearly we don’t understand each other but you kept it up ... I asked you to leave me alone cause I have better things to do then listen to a bunch of old men on their last legs be condescending and passive aggressive and take all my words out of context. I’m tired of talk to a bunch of old men that probably do nothing but sit on their chairs and type on this forum all day about a rare type of angina that practically nobody has. I’ve asked you all to drop it multiple times now but you keep on talking about me like I’m not even here so I guess I’ll stop being so nice  
    • Posted

      Alex isn’t on a CCB from what she has said ..... soooooooo doubt it will kill her. It also sounds like 2 of those people died at least of negligence not an actual anti acid 

       

    • Posted

      Hi Samuel and Bishpick, would like your thoughts on this being the base of the assessment tree? what have I missed what could I add... thank you.

      Episodes of coronary artery spasm (particularly in the morning when spontaneous coronary artery spasm is most likely to occur) can be precipitated by:

      Physical or mental stress. (prolonged)

      ?Cold draught reaction Cold dip reaction

      Magnesium deficiency.

      Large meal consumption 

      Endothelial dysfunction

      Hyperventilation.

      The Valsalva manoeuvre.

      Pharmacological agents such as cocaine.

      Sympathomimetic agents - eg, adrenaline (epinephrine), noradrenaline (norepinephrine).

      Beta-blockers.

      Parasympathomimetic agents - eg, methacholine, pilocarpine.

      Ergot alkaloids - eg, ergotamine.

      Symptoms

      These are variable, from brief unnoticed episodes to severe prolonged angina.

      This variant of angina occurs at rest, usually lasting for between 5 and 30 minutes. Most episodes occur between midnight and early morning.

      Any episode, include brief and otherwise unnoticed episodes, can result in myocardial ischaemia, life-threatening arrhythmias and sudden death.

      A few patients have a general abnormality of vasomotor tone. They may also present with symptoms of migraine headache and Raynaud's phenomenon.

      Finding other evidence of diffuse atherosclerotic disease does not differentiate patients with variant angina from those with unstable angina. Physical examination does not reliably differentiate between variant angina and occlusive coronary artery disease.

      Differential diagnosis

      See also separate Chest Pain and Cardiac-type Chest Pain Presenting in Primary Care articles.

      Distinguishing Prinzmetal's angina from an acute coronary syndrome is very difficult and so patients usually require hospital assessment and admission.

      Many patients with coronary artery spasm also have obstructive coronary artery disease.

      Investigations

      FBC, renal function, electrolytes, fasting blood glucose and lipid levels.

      Cardiac enzymes and troponins to assess for acute coronary syndrome.

      ECG: transient ST-segment elevation corresponding to the distribution of the affected coronary artery during attacks is characteristic.

      Ambulatory ECG monitoring may be required because episodes of coronary artery vasospasm are often brief and ECG findings are often normal between attacks.

      Coronary angiography is the gold standard for the diagnosis of variant angina. Several provocative tests for coronary spasm are used, including ergonovine, acetylcholine, neuropeptide Y and dopamine.

      If coronary revascularisation is not being considered or invasive coronary angiography is not clinically appropriate or acceptable to the person, offer non-invasive functional imaging. Options for non-invasive functional testing include:

      Myocardial perfusion scintigraphy (MPS) using single photon emission computed tomography (SPECT).

      Stress echocardiography.

      First-pass contrast-enhanced magnetic resonance (MR) perfusion.

      MR imaging for stress-induced wall motion abnormalities.

      Management

      There is no specific cure. Managing lifestyle factors is important in prevention. Smoking, alcohol, and high levels of anxiety have a significant role in coronary spasm.

      Specific measures include:

      Patients with angina at rest should be admitted to a hospital for observation, evaluation and initial management.

      Co-existing coronary artery disease is common and so management includes assessment and modification of all cardiovascular risk factors.

      Nitrates and calcium-channel blockers are the mainstay of medical therapy:

      Glyceryl trinitrate effectively treats episodes of angina and myocardial ischaemia and long-acting nitrate preparations reduce the frequency of recurrent events.

      Calcium-channel blockers are very effective in preventing coronary vasospasm and variant angina.[3]

      Beta-blockers, especially those with non-selective adrenoceptor blocking effects, may aggravate coronary artery spasm and therefore should be avoided.

      Implantable cardioverter defibrillator devices have been used in patients who survive ventricular tachycardia or fibrillation due to coronary artery spasm. This treatment is controversial for primary prevention but should be considered for high-risk patients.

      Coronary artery stenting may be required for refractory spasm.

      Coronary revascularisation may be required for associated fixed stenosis due to coronary artery disease.

      ?on reading back amused to see we are dammed for inclusion and dammed for exclusion ah well.. says it all really..

    • Posted

      If you don’t want to hear any more from us decrepit old me setting on our Butts just in subscribe from this forum, we will try real hard to survive without you ... By By
    • Posted

      Hi Andrew

      This paragraph 

      "Coronary angiography is the gold standard for the diagnosis of variant angina. Several provocative tests for coronary spasm are used, including ergonovine, acetylcholine, neuropeptide Y and dopamine."

      I would highly recommend adding something along the lines of

      " although most of these tests, especially the acetylcholine and ergonovine, have recently fallen from favor with most medical personnel because of the unacceptably high fatality rates, especially with acetylcholine which is known to cause severe spasms which can and often does lead to sudden heart failures.

    • Posted

      OMG I HATE autocorrect,  I used voice pecause I was moving and didn’t feel like typing. Any one trying to read the first post by me in this discussion (this one will probably put it at the bottom so everyone will think I’ve lost my mind) please ignore the incorrect although impeccably spelled sentences. It was my phone I promise (Why don’t spell checkers make allowances for Texas accents)
    • Posted

      That is a fair point, but, ... ok i will look at that again... its a tough one because to see the spasms they have to be provoked (usually unless you are lucky) i know my cardio refused to do any more he reckoned on 9 out of 10 being enough to diagnose.... yes i will change that... Thank you!!!!! good luck with teaching your phone some proper language skills... it doesn't pick up my accent sometimes either... SW UK.... Hope all is good and well with you....... 

    • Posted

      How bout you guys take each other’s numbers and go have your discussion somewhere else 
    • Posted

      Last time to be kind. Unsubscribe from this forum you will not receive any further notices and or emails. I’m sure if you can’t understand how to do this one of the adults here will be happy to give you step by step instructions. LEAVE!
    • Posted

      Hi you guys - excellent discussion.  Have been avidly following along.  So necessary to 'think tank', and with on-line, one can 1) check out and 2) other members have the possibility of chiming in.  Go to it.

      Reminds me of the excellent work done by the PMAUK group, plus the sterling work of EULAR.  And, the concrete results of the LDN group.  Oh, and not forgetting the fluoroquinolone toxicity site -  and, the heroic achievements of the gadolinium toxicity exposure.

      Only by patient support groups does so much that is needed for better medical education, are the forward step functions achieved.  On with the dialogue, following every printed word -  

    • Posted

      Thank you Molly, please also contribute..... and yes various worldwide patient and consultant groups have made amazing changes in their fields.... 
    • Posted

      Then feel free to open your own discussion instead of doing it on mine ...... you might be doing this specifically to annoy me but you’re also blowing up Alex’s email too 
    • Posted

      Sooooo you’re blackmailing me ? Leave or you will continue harassing me? 
    • Posted

      To inform all I have contacted the team at patient.info to remove garren88859 he has expressed a desire to no longer receive our discussion so.... because he can’t or won’t unsubscribe I guessed the best and most mature response would be to ask the site team to help the poor unfortunate to leave.

    • Posted

      All you have to do is set up mailbox rules for example i set mine up so that anything with garren in the subject line goes straight to trash... easy... all the users on here though use the forums to keep up to date with ideas developments etc.... and so far you are the only one i have had to trash box rule set... but it was easy to do and i no longer see your replies posts etc till i get back replying to someone who has helpful constructive comments to make...

       

    • Posted

      That’s fine I’ll just make a new account ..... maybe that time I won’t have immature old men trolling me cause they don’t like that I made a seggestion to somebody 
    • Posted

      That’s ok little buddy you keep it up with that passive aggressive attitude and see where it gets you in life 
    • Posted

      No worries Bishpick, all his stuff goes straight to trash anyway...so it no longer affects me and i pick out the interesting stuff for responses... seems odd he cant set a mailbox rule though... ah well no worries....Pity though in a way as he has made me aware again of this problem and got me going properly.... so any contributions are gratefully received and then we can start chopping into a sheet for A&E etc and a card version. 

       

    • Posted

      Also FYI you were the one asking me to leave awhile ago ..... I think it’s you at the time who expressed any desire to continue reviving the discussion and then blackmailed me to leave lest you harras me with constant emails ..... how sad that I get all of this cause all I did was recommend something that helped me. 
    • Posted

      You just don’t get it do you? As long as you’re subscribed to this page you will receive an email if we are talking to you or not. No one is sending you anything. It is a function of the page, it’s automatic, the server does it, I have no desire for you to see anything I say. Now do you understand... unsubscribe no emails. I can’t say it any more simple. I’M NOT EMAILING YOU. I am how ever now blocking you so don’t bother to respond I won’t see it.
    • Posted

      Hu Bishpick,

      ?That is the exact reason none of my cardiologists will not perform this test(s), it has a high fatality/ incident  rate. The oldest of my cardiologist who holds a professorship in cardiology was telling me he was performing this test on a patient in France and when the provocative agent was slowly introduced into the patient one of the major arteries simply disappeared and couldn't be found, he didn't say if the patient survived or not, I'm guessing they didn't because that was one of his stories of how dangerous these tests could be. I'm only guessing here but that artery that disappeared must of spasmed so severely that it had shrunk and disappeared ...... somewhere.

      ?Cardiologists here use the cold compressor or hyperventilation tests here, sometimes they are lucky enough to catch a spasm during an angiogram looking for any obstructions, then they can definitely say ahh now I can see the problem and if educated in prinzmetal can give an absolute diagnosis.

    • Posted

      Look where it's got you, you must lead a sad life, eating your trashy food and choofing away on your smokes that  required you to go see your doctor so he gave you a quick fix of reflux medication that  cured you so you come in here and announce it to the whole world... hey everybody try this it worked for me, so just take it , it may work for you.

      ?I don't think you're 28 I think you are younger than 15, you certainly don't act your age, unless the anxiety has you all twisted up impairing your cognitive behavouir . Us "old" men have probably over 150 years life experiences between us, so that does kind of give us all a heads up on things, probably a lot of experiences that haven't even entered your life yet.

    • Posted

      Hi Andrew,

      ?That's pretty well spot on, it's a pity a lot of cardiologists don't study it, although the older cardiologist I see , the one I mentioned to Bishpick earlier in regards to the provocative testing, he was telling me that over time I will develop a tolerance to all the nitrates ,by the sounds of it I'm like you, I literally have to drink the GTN spray and still won't get any relief. my attacks can last from 5 minutes through to 2 - 3 hours if pain relief isn't taken and only trying to rely  on the GTN.

      ?Something that has caught my interest is Iron, I have an iron deficiency and when I had my first iron infusion half way through it I developed chest pain, Yep, GTN took care of that episode, 10 minutes later chest pain returned, sure enough the GTN worked again, continued on with my day although was starting to feel some other side effects from the iron infusion and my chest pain became more frequent. now after around 3 days after the infusion my chest pains, even my regular ones had pretty well much ceased, now into day 13 my chest pain (spasms) are slowly returning, now I don't know if it's because I have been using my pain killers more frequently due to the bad side effects from the iron infusion and it's masked my chest pain or the iron had actually played a role in it somehow, I've been looking high and low for any info in regards to iron and angina, nothing I have found yet that is suggestive or conclusive in that regard. I know low iron has the ability to remove oxygen from the blood and therefore can upset the entire body, also that iron deficiency can mean loss of blood from somewhere inside  the body, usually the stomach, sometimes peoples bodies just won't absorb iron. Any how I'll keep digging for info.

      ?Now back to your post, that's how I was diagnosed pretty well much with PM angina, you mentioned endothelium dysfunction ? This is what another cardiologist explained to me after a heart attack, apparently what is happening with me is because of my high/weird lipids, the cholesterol was eating/absorbing the nitric oxide in the endothelium and because of this there isn't enough nitric oxide in it to keep the artery tone normal, the lack of nitric oxide was sending my vessels and arteries into spasms. It made sense to me, how does that fit with you ? 

    • Posted

      I react so severely to  acetylcholine I’ve removed acetylcholine producing vegetables from my diet, I replaced lettuce with baby spinach, etc. also I now have a pharmaceutical book that shows the decade molecular structure of most of my meds, NO acetylcholine allowed. My first chemical stress test (when it was a brand new procedure) was an acetylcholine drip. It stopped my heart instantly, they almost didn’t get it to restart. Still I did not get a proper diagnosis. In my pre PM history I had 3 Dr.s get it right but every time I was moved and the new cardiologist would say “emergency room Doctors and their imagination “ . Even when in July 2016 till March 2017 I had 28 major cardiac events they still wouldn’t say PM.... March 2017 my heart imploded, I refused treatment in the ambulance because they could never catch it in action, I let it go to far. The cardiologist who did the cath. said he had to force the valve open just to inject dye my heart was compressed to the size of a standard pill bottle. He injected 2 very large syringes of nitro directly into the sheath for the camera, that’s the only thing that would stop the attack, what followed was 6 days of IV nitro and an announcement that I had PM and my heart would no longer continue to beat on its own .... soooooo.... pacemaker! Now they give my massive doses of CCB’s because if it stops my heart no big deal the pacer takes up the slack. Coming up on a year later and I still haven’t had another attack that hospitalize me I do you have occasional angina but I can feel the pacemaker fight against the spasms. It’s work so far so now I’m working on my diet, Temperature, and humidity. Once I get those be I’ll beat fine.

      🤟 Gnarly

    • Posted

      I’ve started looking into the secondary illnesses almost all of us it appears have it either Lymphocytic disorders (mine is CLL) or lipid disorders or both. I know the calcium cycle  is involved, And my leukemia is cd20 negative cd20 is a calcium channel uptake  enzyme.  So I’m fairly sure my leukemia is involved in my Prinzmetal.  I’ve been looking to see if I can find others that have genetic testing done on their secondary diseases and I’d like to see if I can find a commonality between chemicals that can cause an attack and the genetic changes that have been caused by the secondary disease . I would think that would be a very interesting directions to pursue research they have found nothing else if they can solidly say “this is what causes the spasms”  so because of my experience of completely removing the calcium cycle from my leukemia and from my PM  I would very much like to see if there someone else that has a similar possible link.
    • Posted

      There has been rumours on the grapevine that is what they are thinking of doing to me because of my bradycardia and the spasms, nothing has actually been mentioned yet to me personally pacemaker, although  I didn't suffer the way you did  .I'm on 600Mg's of Cardizem daily myself but I think I have developed a tolerance to that as well, it did work for awhile, perhaps does still to a certain extent, then I was put onto Perhexiline and that helped fantasticlly for 12 months, but only on the late night/early hours of the morning spasms, for some reason did nothing for the day time spasms, last April - May all the late night/early hours of the morning spasms started to return, I got 2 years out of the perhexiline, that's another CCB but I believe only Australia and New Zealand are the only 2 countries that still prescribe it due to toxicity if not monitored by your GP, I think that's why doctors through out the world won't prescribe it because of that and the regular blood tests to keep an eye on it so that it isn't causing a toxic reaction, comes back to the usual I think, money wasted on un neccassary  blood tests, not sure.       

    • Posted

      I'm not up to speed with leukemia? , I'm not educated in that area to be able to assist. I and by the sounds of it you ? have a Lipid problem ? I have been told mine is way to weird and 2 cardiologists have told me that is what is causing my spasms, so I dare say there is something in that, I'm looking into iron now, I don't know if you saw my comment to Andrew in regards to this ? I had an iron infusion 12-13 days ago, half way through the infusion I developed chest pain, GTN took care of it, 10 minutes later chest pain again , once again GTN took care of it, later on that afternoon I started developing side effects from the iron infusion, knees started aching and got worse as the days went on, chest pain was troublesome for about 3 days afterwards but the frequency of chest pain I would normally suffer during a day diminished as each day went on, I was bed ridden for 5-6 days after the infusion, I had to force myself to get up every now and then so I could at least get a little bit of exercise, then back to bed, As I had said to Andrew I don't know if the chest pain was masked by my pain relief due to the knees and by this time moved up into my hips and the pain was becoming unbearable or the iron had actually something to do with decreasing the spasms ? well as of early hours of Monday morning my chest pain had started to rear it's ugly head back up, and have been getting the spasms on and off since then, because of my knees I take my pain killers and that also takes care of my chest pain, basically a shortcut for my chest pain, avoiding the GTN smile , cheating I know, but the pain killers last longer.... I can't find anything concrete about iron deficiency? and any type of angina, MVD or syndrome X.

      ?I have a double banger coming up next week, Endoscopy and Colonoscopy all in one, one straight  after the other that is, well so I was informed,  I tested positive in the FOBT test , I am losing blood somewhere or I can't absorb iron. I have had low iron levels for quite sometime and no one bothered to do anything about it until my new GP, she is testing for the obvious but there are also other things that can cause low iron and because I have been on the waiting list into year 6 this year for the endoscopy she lit a fire under our public hospital I think and things are moving now, perhaps a bit to fast now, but at least I should know something on or a few days after the procedures as to what's causing the low iron.

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