1. Community
  2. Heart Health
  3. Angina

prinzmetals angina

Posted , 96 users are following.

Guest
Guest

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.

14 likes, 699 replies

699 Replies

Prev Next
  • jill71159
    jill71159 Guest

    Posted

    Yes, I am with you there.  I get attacks in daytime - generally linked to stress.  Last two I had were after exertion too (one a hefty flight of steps and the other walking without my stick a lot further than I am actually capable of).  I get mild nausea, inability to breathe in properly, pallor, and yes it makes you anxious because it is so unexpected.  Complicate that with longstanding anxiety issues and it can be hard to convince some that it isn't just a panic attack.  If I knew a solution I would be very happy but at present I am still going through the diagnosis process and with the exception of my own GP who is lovely kmost all the other medical people I deall with seem to treat it very trivially and keep putting off even the basic diagnosis.  I had rheumatic fever as a kid so heart damage OUGHT to be something they take seriously
    • cher42845
      cher42845 jill71159

      Posted

      Yes they shoudl take it seriously. I have cousin that had total occulsion form the spasm no blockages and died. Sister that went into complete heart block.  I also had  rheumatic fever and the Coronary Artery Spasm is causing the heart murmur to act up again as well. Also I also get Artery Spasms in my pulmonary, renal and cerebral arteries. The spasm in your pulomanry arteries & vessels are often right along with the CAS that oftne casues reduction in oxygenation of the blood supply. Form that many people have run into during trials for the disease that is all to commmon of events. I always offer a DVD of articles to those physicians that are ill informed of articles that i have gotten from Mayo & various other sources. Often time when I hit a new ER physcician they just have never really studied the disease and are very unaware of all the complexities. Mayo teaches biofeedback to help relax you during attacks. I often look so relaxed even though I am in in horrible pain they ask me if I really am in pain. I often close my eyes & immagine myself on beah watching waves. I rarely feel anxious and that only occurs when I have a nurse or phsycian that is obviously ill informed on the disease and I need to get on the nitro drip and they do not want to do what my written instructions from my cardilogist says. I always turn any refusal to comply over to the powers to be at the hospital I ahve issues with along with copy of the cardiologists instructiosn in those events and I never have anohter issue with the specific physician again.
    • jill71159
      jill71159 cher42845

      Posted

      How long ago was your rheumatic fever?  Mine was in 1987 and wasn't really properly addressed until later on I had a bad reaction to a dental anaesthetic and Malignant Hyperpyraxia was found.  I carry a care passport with me at all time, have copies lodged all over the place with Frimley Park, Guildford County etc etc.  Without exception they ignore the lot.  Drives me mad.  
    • cher42845
      cher42845 jill71159

      Posted

      Mine was 1968. I was sent right to Childerns hospital becasue my lips and hands started turning purple
    • Bettebet
      Bettebet cher42845

      Posted

      HiSorry to hear of your troubles.  Ihad my HA i nDecember and have been diagoniosed with PMA.

      Would you mind sharing the articles you have collected?

      Thanks

      Brooke

    • cher42845
      cher42845 Bettebet

      Posted

      My DVD us about 300 MB of articles . but here is a few of the first ones on the DVD. Thye can be foudn on the web in PDF as well. 

      Epicardial Vasomotor Responses to Acetylcholine Are Not Predicted

      by Coronary Atherosclerosis As Assessed by Intracoronary Ultrasound

      several authors Dr. AMIR LERMAN is at Mayo, JACC Vol. 26 No. 1 JUly 1995

      Long-term L-Argine Supplementaion Improves Small-Vessel Coronary Endothelial Function in Humans

      circ.ahajournals circulation 1998

      Provoked Coronary Spasm Predicts Adverse Outcome in Patients With Acute Myocardial Infarction

      Journal of the American College of Cardiology 2008 Vol 52 No 7 2008 

      ... one athur is Kohei Wakabayashi ...

      The New England Journal of Medicine May 19, 1994

      Immages n Clinical Medicine Kim Eagle MD

      Acute Mycardial Infarction and Coronary Spasm

      Long-Term Follow-uo of Patients with Mild Coronary Artery Disease and Endothelail Dysfunction

      ahajournals circulation 2000 101:948-954

      Coronary Artery Spadm as a Frequent Cause of Acute Coronary Syndrome

      Journal of American College of Cardiology VOl 52 no. 7 2008

      Cliical Implications of provocation test for coronary Artery Spasm

      Multicentre Registry Study of the Japanese Coronary Spasm Association

      EU Heart J (2012) July 10 2012

      The role of vascular failure in coronary artery spasm

      Hiroaki Kawano (MD, PhD)∗, Koichi Node (MD, PhD, FJCC)

      Department of Cardiovascular & Renal Disease Medicine, Saga University, 

      Saga, 5-1-1, Nabeshima, Saga City 849-8501, Japan  Journal Cardiology 2011 57 2-7

      Successful Treatment of Symptomatic Coronary Endothelial Dysfunction

      With Enhanced External Counterpulsation

      PIERO O. BONETTI, MD; SURESH N. GADASALLI, MD; AMIR LERMAN, MD; AND GREGORY W. BARSNESS, MD

  • Bettebet
    Bettebet Guest

    Posted

    Hi

    Has anyone with prinzmetals had adverse reactiopns to quininie or tonic water?

    I ask as quinine is said to afect tissues and cramping. Couldn't it also affect artery tissue ?

  • cher42845
    cher42845 Guest

    Posted

    So ended up back in hospital ICU yet agian. Nitro Drip 80 along with my other meds. So we have now added isosorbide dinitrate 40 q4 to everythign else I am taking. That way I do not have a 8 hour window with no coverage. With isosorbide dinitrate is muh less prone to resitance then the longer form I take of imdur. The first ER near my house does nto have a cardiac unit to I end up getting a XFR via ambulnace when they admit me.Tis ER docotr was one of "THOSE" again. One of the first things out of her mouth was 'Maybe your insurance won't pay if we admit you so thnk about that OH man like I was not under enough stress. Talk about unethical. SO as the hours went b and the Nitro drip kep going up a I had to staart telling her ok you really need to give em my Nicardipine  and Nifedipine as ell or just the sheer withdrawal of the med will cause the sapsms. Should not have to tell them these things (shaking head) so fianlly she ask about XFR to Aurora Univerity hospital where my doctor is at. She came in waiting for the call back and said we need to decided what we will do if he says not to adminit you. And "What if he says we should avoid admitting you.". That was it... I said "He would not be stupid enough to do that, he understands the disease and as the head of cardiology he knows what has to be done." I heard her after she got off the call with them up there from my bed and she was upset saying she was treated like one of the students and "I am a seasoned prfessional". I suspect she made one of here silly remarks to them. And perhaps she will go read up on the latst articles on the disease. The head of Cardiolgy is putting together some thigns for the ER docs sicne he knows many have some very old outdated misconceptions. I was so glad to have the new class of students come around to get a lesson on the issues we face. I had a great young man working with me that I know will go out and know what to do for other patients. He is going to be an amazing Cardiac Phsycian. He really went all out to read p on not oly my records and articles. He came in with soem of my EKG's without the CAS adn with and showed me how they could tell there was a flow deviation and all. He will be a credit to his profession and I bet he saves hundereds or thousands of us with CAS from MI's and years of sufferring.I am do happy to be a part of the instruction of the next generation of cardiologists.  
    • samuels
      samuels cher42845

      Posted

      Hi,

      Unfortunately where I am, the young and aspiring future doctors here have no real idea about Prinzmetal angina,  I honestly believe it isn't being taught in medical school anymore, the older doctors here a far mor compassionate than the younger ones as they have seen and dealt with this condition even though it is rare especially where I am, most of our ED doctors have done their time in other emergency departments world wide they have seen this condition in other countries. I have had a canadian doctor who is a senior ED doctor and he understands the condition, I've had Scottish doctors who know the condition, I've had doctors from the USA they understand the condition but I find the doctors from the USA to be a bit more ..Hmmm ...how can I put it.. A bit more blazay about it, Our own doctors from here the older ones have heard about Prinzmetal but the younger ones haven't and they turn around and ask me what is Prinzmetal...that's when I shake my head..they should know this.

      As far as I'm aware there has been research into this here in this country and they have come up with their own theories, What has been explained to me about it, in my case anyrate, could be related to other patients here,don't know, What is happening with me is that "apparently" I have a very weird lipid profile and because of that it's either absorbing or preventing the nitric oxide from being made naturally in the endothelium with is the biggest factor/pre-cursor in Prinzmetal Angina...without the nitric oxide it sends all your arteries and small blood vessels that are in your heart into spasms causing us all this grief, now when I was diagnosed with this condition I was told it is  rather hard to manage even on medication and there is no cure for it,perhaps one day but not in my time (that was the comment from my cardiologist who was head of cardiology at the time) he would be getting close to 75 and still practising because he is a most sought after cardiologist. He has stated nitrates and calcium channel blockers have been found to be the most successful at reducing the frequencies of attacks, but just of lately I have been reading about Beta Blockers are being used more in reducing the frequencies.

      Because I go under what we call the "public system" I now have a different cardiologist, who just happens to of taken over my old cardiologists position in the public hospital ( I can still see my other cardiologist any time, in fact he told me to keep in touch with him so he could see how the new cardologist was treating me...lol..) This new cardiologist is as I was told a bit "green " behind the ears but he is pretty good. I see you mentioned about a doctor mentionining about avoiding admitting you to hospital, that's the procedure down here as well, if there's no need for us to be in there we are sent home because they know what it is, they will admit us if they do find a problem with the ECG or our troponins are raised well above the universal cut off points...very frustrating I know but unfortunately that's how it is, if all comes back negative or no changes the best they can offer us is pain relief, we have some nasty doctors here that don't even offer that they send us home in pain, but the way I see it that's their problem as I usually call an ambulance back up and go back in if pain hasn't gone by the end of the day/night and so a different doctor is assigned to you, the whole procedure is done again because as one ED senior doc told me... things can change in a short period and I should not sit at home suffering as it could be the "real deal" . I've had 3 mild heart attacks and they all feel like Prinzmetal Angina attacks,although one episode( My first mild heart attack) I had an unusual indigestion feeling, it felt like it but it didn't...if you know what I mean.

    • cher42845
      cher42845 samuels

      Posted

        'Beta Blockers' are not good at all all the research I have read says  and my specialists. I had one doctor  insited I take Beta Blocker and boy I was in crisis the whole time he had  me on it every day  all day no mater what else they gave me. The manufactures here even have the warning on the label not to give it to anyone wiht Coronary Artery Spasm/ Variant Angina/Prinzmetal

      Actually US the term Prinzmetal is not used to often they refer to the condition as Coronary Artery Spasms (CAS) or Variant Angina or coronary spastic angina. Have them put those in your records  and refer to it by that. Becaue the OLD OLD aerticles whihc are misleading only often  have the term Prinzmetal in them which if they do not know the term and look it up they get the wrong impression.

      And yes the Endothelial dysfunction is the underlying casue of the sapsm. Many factors cause the sapsm to then become more active when you have Endothelial dysfunction one of which is the the PaCO2 levels.

      EKG Multi vessel spasms: In the cath lab we have recreate the spasm in myself &  many others in our study at Mayo and at times there may well not be any EKG changes do to opposing forces but we could clearly see the greatly reduced blood flow to the heart. So if they have a known CAS patient with angina and no ekg changes using that criteria can be fatal. So I am so glad I am not there. This past hospital stay, during attacks, I hade axis changes on someinverted t-waves in 3 or more leads at times. So I would be in a world of hurt if ER doctors looked for only lrge ST elevation which is the OLD OLD way they said you had Prinzmetal. I have not shown that since I went on Calciim channel blockers & research in MANY MANY countries have proven that out. The majority of the patients on calcium channel blockers will no longer have highly elevelated T-waves.

    • samuels
      samuels cher42845

      Posted

      Yes the older doctors know all the terms for the old term ....Prinzmetal..but still the younger generation still don't really know about it, you mention Vasospasms and you get the weirdest looks  as Vaso spasms has something to do with the nipples on a female breast, I haven't got the relevant details readily available about vasospasms but that's what my research turned up..lol.... As you say there are no many new terms and the older doctors down here use them but ot the young ones because they don't know their meanings....I mentioned MVD the other month and they knew a little bit about it but not enough to know what to do other than say see your cardiologist..which is a fair statement to make but when you're in pain you need relief and understanding, not "go home sleep it off" know what  I mean...

      They are actually starting to doubt the original founder(Prinz) of this dis-order of coronary artery spasm (CAS)

    • cher42845
      cher42845 samuels

      Posted

       The most common term used in many of the research articles is Coronary Artery Spasm (CAS) followed by  Variant Angina now days here. Yeaj I looked up your AU sites and see the ref to breast feeding her is what this site says US.

      https://en.wikipedia.org/wiki/Vasospasm

       

  • Bettebet
    Bettebet Guest

    Posted

    Has anyone ever had prinzmetal angina reaction after drinking tonic/quinine   water?

     

    • cher42845
      cher42845 Bettebet

      Posted

      You should avoid the consumption of all carbonated bevaerges, yes they can set it off. 

  • georgia63195
    georgia63195 Guest

    Posted

    I had my first stent put in 2005 and then triple pass surgery in 2009.  I feel I only had a bandaged on my problem.  What is causing the artries to plug?  After I had surgery 2009 in Oct.  by April 2010 I had the same problem again.  I the mean time I found a booklet on Chelation for the heart.  I find no regular doctor will discuss it with you.  You need to go doctor of natural medicine.  I started the chelation treatments and felt so much better.  Because I have angina heart disease I needed to keep up the Chelation treatments periodly.  I did not do this because doctor could not get into my veins.  (I did not realize I needed a diffent doctor) Findly in 2014 I cannot excerise without pain.  I cannot even walk a block.  Started going to the doctors and all kinds of testing to find out what's wrong.  I took Chelation again but did not take care of the problem.  I heard about a treatment Apheresis that filters the blood.  What I found out is - I make Lipoprotien (a).  Your high number suppose to be 29 - mine is 126.  It is genetic but the Apheresis is to filter the blood to get rid of 76%.  I find out on Aug. 4th if I can have it.  

    It is interesting to me is on the discusstion forums angina with labels like prinzmetals - I hadn't heard of there was diffent kinds of names to the angina disease.

     

    • cher42845
      cher42845 georgia63195

      Posted

      IN hte case of people like me we have no blockages at all. Min I had 1 that was 20% but with diet I was able toremove all blockages so at this point I have nont. Many with the Variant Angina have zero blockges. THe angina from this form  of Angina is caused by endothelial dysfunction.

       

    • samuels
      samuels georgia63195

      Posted

      If you have high cholestrol you are also at risk of getting Prinzmetal Angina, As cher said Prinzmetal is more of an endothelium dysfunction, Now what can cause this dysfunction is high cholsestrol, I can't remember precisely what my cardiologist had said but it all still means the same thing, the cholestrol actually (either) eats or dissolves the Nitric Oxide in the endothelium and when you don't have Nitric Oxide to naturally aid in the proper artery function the arteries including the small blood vessels in the heart to go into spasms.

      I'm known (as are others that have been discussed worldwide between cardiologists ) as patient X , I have a very weird lipid profile something no-one to date has seen "apparently" . Now that I'm older I have developed mild coronary heart disease, I have a 60% occlussion in the right coronary artery,  12 months ago I had a stress test done to see if my blood flow was being limited but all had showed up good, I'm thinking now the next step for me whilst awaiting a new medication to be made available to patients hopefully very soon is another Angiogram....

    • samuels
      samuels

      Posted

      That should of said "Mild Coronary Artery Disease"  (CAD...medical term ).. my apologies for mixing up my terms smile
Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.