Prinzmetal angina

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I have Prinzmetal angina.  My first attack was when I was 44 but not diagnosed until I was 51.  I just recently found out i have eNOS T786C mutation which most likely is causing the vasospams.  I'm curious if anyone else has been diagnosed with this mutation.  A doctor that is doing research on Prinzmetal patients recommends taking L-arginine.  Anyone else take this supplement?  If so has it helped?  I have never had an EKG during an attack and was wondring if ST segment elevation is ALWAYS present on an EKG during spasm?

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  • Posted

    I started taking L-arginine about a year and a half ago.  I took it consistantly for 9 months and didn't notice a change, so I stopped taking it.  A week later I had a heart attack.  I went back on it.  That was my third heart attack, and I did have one while taking it.  I can't say that I noticed an improvement in my symptoms, but I also don't ignore the fact that I had a heart attack shortly after stopping it.

    The reccomended dose is 4.5 grams twice daily.  If you go to a nutrition store, you'll end up taking something like 14 pills a day to get the required dose.  However, you can order a powder form made by Nestle from Amazon (not sure if they ship that item everywhere, but they do to the U.S.).  I think it is around $50 or $60 U.S. dollars (I have it on auto-order and my husband pays the bills, so I don't know the exact cost).  

    ST changes are sometimes present.  I used to have all kinds of ST changes with attacks, but haven't had any for about 9 months.  You can have a heart attack without having ST changes, which is why they also do the blood work in determining if a heart attack has occurred.  They are called a NSTEMI (Non-ST Elevation Myocardial Infarction), verbally, they call call them "Non-STEMI" (as STEMI is the typical heart attack).  A NSTEMI causes less damage than the other.

    Hope this was helpful!

    • Posted

      Thanks so much for your response.  There is a dr in Cinn that is doing Prinzmetal research and did a blood test that revealed I had a mutated gene that most Prinzmetal patients have. He suggested exactly what you said but I was kinda nervous about starting it since it was such large doses and it is just research. I was wondering long term what it would do. Do you think when you just stopped without slowly reducing dosage that might have caused your heart attaclk...just wondering.  I had a spasm attack Dec 30.  It was pretty severe and lasted about an hour.  Ever since I dont feel right.  Now I keep having chest tightning and nausea.  I went to the hospital and they ran blood tests, echo, ct scan, stress test and everything came back normal yet I continue to not feel right. For years I would have just the spasms and when they were over I felt fine.  Something changed after that last attack. Did anything like that happen to you? I did read that the chest tightning is a sign of angina but my blood pressure is low 100/57 and I'm afraid to take the Nitro.   
    • Posted

      Look for anything you might have new in your diet even thigns like vitamins. I had a vitamin add caffiene and that sets it off. I am allergic to soy & had vitamin add soy & that sets it off. You may have a hidden trigger. Write everything you eat or drink down and write down the tiems of attacks often helps find it. Are you saying you stopped the L-arginne suddenly? I woul nt do that I feel the affects if I miss the does I an imagine if yoou stop suddenly it can affect you. 
    • Posted

      I never started the l-arginine. How long have you been on it and do you take any other medication? Do you have any side effects from the l-arginine?
    • Posted

      Right now I am in a bad state. ER 4x & hospital 2 x in 2 weeks. Just got out was in Mon-thurs. Looking into the 2 changes which was the Vitimain thye put caffine in and haivng a check run on manufactured of the Nifedipine and it turns out they cannot guarentee that his particular manufacture with the last batch I was sent is indeed soy free they have the potential for cross contamination. So It is most likely on eof those 2 factors. I was 6 months no issue sonce when Mayp had me on a new rial drug that is not out yet. I did well on Dialtalizem for years but then it stopped beign affective. So we went to Verapimil and was again stable for years adn it to stopped being affective. I am now on Nicardipine, Imdur 240 as of this week. When that breaks thur we do Nidefidipine, sublingual and this past wee they added in Isossorbide Dinitrate. If all those fails back to ER for Nitro drip which often termiantes attack. If it does nto terminate I end up on notro for day in hospital. Once I get more table I coem home. So right now the hnt i on to find the trigger o course and we have 2 likely candidates. Stopped the Vitamin that the manufactureed put caffiene in of course as soona s I called them and foudn ti was put in it. SO right now I can fidn no Multiple Vitamin I can take that does nto have soy or caffine so I am unable to take one. We will then stopped the nifedapine if not resolved by stopping vitamin. If it then resolves after Nifedipine is stopped we wil lbe fairiy sure it is cross contamination adn Allergic Angina. So since I get allergic Angina as well I am a bit more complex. I also have FMD wich casues high BP I have over an our at 197/141 to 190/190 over 110's on tuesday and that also causes angina. As wll as Tachycardia which also causes angina. So I am very complex adn it is hard ot keep things under control until we get rid of the triggers,
    • Posted

      For me I have to every tiem I get out of control contact all my medicatiosn manufactures and see if they made a change to thigns IE add caffiene or add SOY. I foten have noidea they did that another vitamin comapny did that last year added soy. Then there I go off to the races once more.

       

    • Posted

      Hi cher,

      Have they ever tried you on Perhexiline (Pexsig) ? I had another angiogram last week, they didn't test for Prinzmetal as they say that procedure is dangerous and lives have been lost doing that test, I mentioned that I have read that it is a very common test and gives the doctor a diagnosis immediately if the drug they use to provoke the spasms works (positive) and quickly reversed with GTN, they still insist it is a dangerous procedure and is not done where I am.

      Now since I have had Perhexiline 100mg added to my medicine bag I actually haven't had any spasms what so ever, I haven't even had to use my GTN spray for the niggles as they have gone as well, with this drug you have to have a blood test every 2  weeks for awhile then once a month if I remember correctly, it's to check the drug level in your system to make sure it's at it's peak level and maintained at that as there can be some toxicity involved and also can interfere with the liver, but if blood test is kept routine all of this can be avoided.

      The drugs that I have found to help the most is very high doses of Cardizem 600mg, Nicorandil and this Perhexiline 100mg , which as I stated earlier this Perhexiline seems to have halted my spasms, this is the longest I have had  without angina.

    • Posted

      I will bring it up on my visit in 2 weeks to Cardio. Since the Thorasic surgery I no longer keep turning blue, I am bak down to 203 liters oxygen not 6-10 liters. My angina is down to about 3 tiems a week. But they are not allowing excercise only walking. So next move was EECP. So I will bring up Perhexiline. 
    • Posted

      Hi cher,

      I have heard that it was taken off the market due to problems , interfering with liver functions, diabetes(I have just been diagnosed as diabetic...type 2 for now). So it may not be available in the USA, not to sure about the UK, I was just reading that it was allowed back into circulation here where I am, in Australia, but that was just reading material, so it didn't actually say it was taken off the market here or doctors chose not to prescribe it due to the complications it could cause. At the moment I'm experiencing muscle weakness all over and an unstable gait every now and then but I have been told they should pass in 2-4 weeks, All I know is that my spasms have gone *touch wood* and that's all I'm concerned with at the moment....lol... I'll worry about the liver after my first blood test next week, apparently it can leave you with liver cirrhosis and other abnormal liver functions, hence the need for regular blood tests.

      Have you looked it up yet ? there's a plethora of info about the drug and what it's used for.  I've been reading about it all afternoon and it's very interesting, it's not suited to everyone but generally well tolerated by the majority. I have also read that it works well in conjunction with Diltiazem, another note worthy thing though is if you are taking any kind of over the counter medicine or supplements you have to double check with the pharmacist or your doctor

    • Posted

      They defenetly won't put m on it then becasue even IBprofen & Tylenol make my liver enzymes go  off.
    • Posted

      Hi, I honestly couldn't tell you, my LFT's are always out of whack and they put me on it, they just need to know what level the drug is sitting at ,if you're not getting enough they bump the dose up, if you are getting to much they reduce the dose. they also need to adjust one of your drugs to if you are a diabetic, just as long as they know your before liver function test obviously if it's at a diseased state your liver they won't give it to you. If my LFT's are higher than normal they will obviously make a determination as to whether to cease the medication or reduce the dose.
  • Posted

    I take l-arginine 3000mg 3 times a day as directed by Mayo Clinic & my present cardiologist at National Jewish. When I was frist diagnosed with Prinzmetal I kept it under control with just Cardiazem. Then years later I got worse and they changed me to Verapimil and was good for anohter while. I am not the usual case..THen in 2010 started having oxygen issues which set it off The L-arginie was added and I calmed down for another few monhts. As my oxygen issues got worse so did hthe angina up to about every 2 hours . They finally figured out 2015 I had Trachobronchomalacia and in Dec had a Tachobronchoplasty. So right now I am down to 3 times a week fro angina, It may get better as lungs & heart recover from the damage caused from the Oxygen issues. But on EKG before Calcium channle blockers I showed ST after I had less st and more subtle EKG changes. The research shows you may not have nay EKG changes and with me when they reproduced the sapsm indeed I had angina cardiac flow deviation  & no EKG change as did others in the study I was in. 
  • Posted

    I was put onto Karva some years back. Told that Anginine didn't always help with the spasms of PMA.  Apparently Karva relaxes the blood vessels. Having said that, Karva can also elevate liver enzymes and cause trouble. And to be effective it has to be taken regularly - not like anginine where you can take it just with the pain. So it would mean regular blood tests for LFT's etc.    

  • Posted

    Does anyone know why we get Prinzmetal Angina. I find it frustrating that I don't know why I have it. Is it similar to other heart issues and can it be caused by cholesterol problems and diabetes?

    I have hereditary cholesterol problems, but haven't checked for Insulin resistance yet, my angiogram showed that "I have the heart of a 20 year old" I'm 49, have always exercised and am annoyed that my body can betray me this way. My cholesterol has never been treated because my HDL has always been high too, now I think I may need a cholesterol med, I have read that high HDL means I probably don't have diabetes.

    My Cardiologist put me on Diltiazem HCL XC120mg and it did help for about 5 months, but now I think I need a higher dose. Diltiazem is in a group of drugs called calcium channel blockers. It works by relaxing the muscles of your heart and blood vessels. Diltiazem is used to treat hypertension (high blood pressure), angina (chest pain), and certain heart rhythm disorders.

    • Posted

      Hi darlene,

      Yes P M Angina is caused by high cholesterol, I too suffer in the same way, I cannot tolerate any of the statins, not even the old fashioned Questran powder, there is a new cholesterol medication on the market, it's an injectable drug used once a fortnight to once a month depending on how bad your cholesterol  is, there is a criteria to be met here where I am because it is on our PBS and beccause I have problems with my HDL and Triglycerides I am not eligible to get it at a government funded cost. The drug is calle PCS K9 Inhibitor.

      I am on 600mg Cardizem ( Diltiazem ) daily , like you it did help but my body seems to have developed a tolerence to all the medications used to treat PM including the GTN, Cardizem is the top  drug  of choice for this condition. Just because you have high cholesterol does not make you immune to diabetes, I have type 2 , this was picked up by the Hba1c blood test to confirm Dr's suspicion.

      Here is what my cardiologist explained to me after I had an NSTEMI, I put it to him about the diagnosis of P M Angina and he concurred with the diagnosis, here's his explanation. Because the body has more than normal or higher density cholesterol running through the cholesterol is actually absorbing / eating away the nitric oxide in the endothelium which in turn is causing artery spasms because the blood / heart has no nitric oxide to perform it's daily functions, Coronary artery spasms otherwise known as Prinzmetal Angina occurs.Hope this has made sense and has been of help to you.

    • Posted

      Also been shown that the stress hormone group and histamine inflamation response has a role to play. Also nicotine and cold draught are shown to be reactive causers and promoted by / in a shock response... Migraine suffererss also shown as a group to be more likely to have PM... susceptability role of cholesterol is likely but sadly it isnt just one thing... but many... and is frustrating... upsetting and annoying...(migraine medication also, from experience, has a huge effect... gp still apologises) 
    • Posted

      Yes I forgot to mention high emotional stress, cold weather even just a slight puff to the face, extreme heat and nicotine are also triggers, they somehow also have an effect on the nitric oxide, as this keeps our arteries and vessels in check and smoothness, nictotine I can relate to but I'm not to sure about why cold / heat triggers an attack. I've never suffered from migraines so I know nothing in that area and why the medication(s) would set an attack off.

      As a retired motor mechanic every car will run differently from another for some reason or other, many factors come into play with cars and trucks, I wish doctors wouldn't put patients in the same basket, we all "run" differently too, they should learn to explore other possibilities in human patients smile

    • Posted

      I have spasms of Coronary Artery, Renal Artery, eyes & Carnial. So I have Migraine , issue with visions due to spasm in eyes, then with Fiber Muscular Dysplasia the renal artery Spasm will sky rocket my BP's last month hitting 243/110. I also see if I have allergic reactiosn increased angina. Right now they are looking into why CRP & Sedrate are up sine I am in bad cycle. When I was preparing & doing  the service fro my sisters funeral the stress hormones really kicked in the angina as well. With me the migraine meds mad things much worse.

    • Posted

      If I was you I would be investigating 'karva' tablets. Be aware, like alcohol they can increase liver enzymes so you would need to test these in your blood every 3 months. Good luck

    • Posted

      Only time I have ever had anxiety is when I had to do the whole service for my sister funeral. Mayo has had me on biofeedback machines during severe angina and test stress hormones and not an issue. CAS is generally not from anxiety
    • Posted

      Hi Samuels and Andrew, Thanks for your information.

      I have never smoked but lived with second had smoke until the approximate age of 20 and now visit my Mom about once a month (smokers there) so I am still exposed. 

      I will ask my MD to check my insulin, I have also begged my Daughter to have herself and my grandchildren checked for cholesterol as it's a possibility that they have it because of the hereditary issue (I honestly didn't know about the hereditary part and how it effects children until now or I would've gotten her checked as a child).

      I have also been told from my Cardiologist that stress can play a big factor.

      He also told me that the reason cold has an effect is because when people get cold their arteries start to narrow on their own (this is natural) and if you already have PM than you have a greater chance of having a problem. 

      And yes I do agree that every person is different and shoud be treated that way smile 

    • Posted

      I believe that it is caused by genetic disorder/s inherited from either one or both parents before birth. my partner was diagnosed with Prinzmetal Angina 2 years ago and then today he was diagnosed with Thalassaemia Minor which is a genetic disorder that affects the red blood cells ranging from unnoticable to fatal. I googled the disorder and noticed that the symptoms and affects etc are very similar to Prenzmetal and after searching for links between the two I found a lot of evidence to suggest that Thalassaemia (as well as some other genetic disorders) are very common in people that have Prinzmetal Angina, and since genetic disorders happen before birth while it's unknown when people get Prenzetal Angina, im asuming the Genetic Disorder is the cause. (please note that this is only my opinion, I have no proof and am not a medical professional)  

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