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Prinzmetal angina

Posted , 14 users are following.

Sheri54949
Sheri54949

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?

1 like, 64 replies

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  • andrew22534
    andrew22534 Sheri54949

    Posted

    Hi Sheri, not had that genetics test but will look into it and see what my GP says.. I have read about Arginine before and another amino acid both have blood vessel support as part of their read up (no i cant remember atthe moment but will post again later when i do) I would be interested in knowing which doctor (who) and why / what he has found happen when using it on their patients. I would be happy to try it, anything ot reduce / improve pain and etc.I have usually found ST to be raised and is part of my check using Alivcor,
    • Sheri54949
      Sheri54949 andrew22534

      Posted

      Hi Andrew,  Thanks for your response.  Dr. Charles Glueck is doing research on Prinzmetal.  You can google him and read his research.  He recomended I take 4.5 grams of Arginaid twice a day 12 hours apart. You can actually get it on Amazon. I too am desperate to find something that works.  I take 10 mg of amlodipine a day and nitro gycerine spray during attacks.  Unfortunately the nitro rarely works.  Does anyone else find Nitro doesnt work for them.  The amlodipine seemed to help reduce the severity and freqency but lately my attacks are getting stonger and longer. Has anyone develped arrhythmias.  I use to have the attacks only at night or early morning now I have them all diffent times of day but still when I'm not active. I also feel very tired after the attack which I didnt before. Anyone else feel that way?
    • andrew22534
      andrew22534 Sheri54949

      Posted

      Hi Sheri, I have used Taurine before and will add Arginine and see if the combination helps. My Arrythmia comes mostly from spending many years keeping very fit but there may also be a link between the two. Micro vessel spasms are the small blood vessels around the heart and usually called variant  or syndrome x PM is the major blood vessels some doctors lump them together some cardiologists dont  as they think they are slighlty different. Do you get migraines? i find if i use gtn sparingly but intensley when needed it still helps a bit... i take 30mg isosorbide at night (bedtime) and two of diltiazem 120mg one at breakfast one at night and flecanide for the arrythmia but that only when they happen The diltiazem i can take onther during the day if i am having a bad day and that helps. doc is keeping the doses as low as works or tolerable to prolong their useful life span as we adapt to them and they become less effective.  
  • ainsjam
    ainsjam Sheri54949

    Posted

    Sheri,

    I am a 47 year old female from the USA. I was diagnosed in January of this year with Prinzmetal's, also known as Variant Angina here. My symptoms were more crushing chest pressure, shortness of breath, and severe fatigue, than actual chest "pain". My left arm has always hurt much more than my chest during attacks. I went from a healthy, active lifestyle to being barely able to walk across a room. After 7 months of MANY tests, ER visits, specialists (some attentive, some dismissive!), I went to the Mayo Clinic, had a heart cath, during which my L anterior descending coronary artery spontaneously spasmed 60% closed. With methergine,it closed to 80%. ST segment depression was noted.

    I have decided against the eNOS genetic testing, as it costs $250 and we are already working through a pile of medical bills.

    My current treatment is: Amlodipine 5mg daily, Magnesium 400mg daily, L-Arginine 4.5 grams twice daily, multivitamin,calcium, D3, fish oil, lots of water, lots of green leafy veggies and other antioxidant foods. I have nitroglycerin tablets that I keep with me, but have only had to use it 3 times. I am still having spasms at various times daily, but the severity is decreased. On days with many spasms I am fatigued, but have been able to resume moderate exercise otherwise, I think because I didn't have heart damage. (Normal Troponin) With careful attention to my lifestyle and a supportive family, I have found a new "Normal" that is acceptable, especially when I compare myself to a year ago!

     I definitely feel for others on this forum who are trying to keep working and have this disease. It is incredibly unpredictable and disruptive to a normal lifestyle! That has been one of the ironies of this diagnosis, " avoid stress". What adult out there can avoid stress?!!

     

    • Sheri54949
      Sheri54949 ainsjam

      Posted

      Thanks Ainsjam,  Did Mayo clinic suggest those medicines and suppliments you are taking?  Did they explain why those particular ones?  Have you had any side effects from taking the L-Arginine and other meds? Curious, do you have swelling in your feet?  How long does your attacks last? My last from 30 minutes to 1 1/2 hours. They are very scary. Unfortunately nitro spray doesn work for me.  When you had the coronary artery spasm during your cardiac cath how did they stop the spasm? How long did it last? 
    • cathymcphee
      cathymcphee Sheri54949

      Posted

      During a cardiac cath they can inject nitro directly into the artery that is spasming.  I've had it done too.

      I've emailed with Dr. Gluek (I live in Canada and don't have insurance in the States so we did everything over the web).  His was gung-ho about getting me started on L-Arginine and having the blood work done (which I did and payed cash for it).  I tried a few times to contact him for the results.  It's a year and a half later and I have yet to have my emails answered, let alone give me my results.  Pretty frustrating when I had to make arrangements to have my blood drawn without an order from a doctor that practices in my country, pay $250 for the test, and then arrange for international transport of the specimen........Hope my experience with him is an isolated event, and you have better luck with him.

  • samuels
    samuels Sheri54949

    Posted

    Hi Sheri,

    I have also been diagnosed with Prinzmetal Angina I was well into my late 30's when it was first suggested, I have never heard of anything about this mutation you are asking about, I'm not taking any supplements for this condition but am taking anti angina medication which works to a degree, I think I have developed an immunity to most of them, they only work for a short term now. I had this discussion with a doctor about a week ago actually...ECG's (EKG for you Americans smile ) They would usually expect to see some kind of change during an attack but it doesn't always happen (show up ) there is a way for testing for Prinzmetal Angina , it's performed in the way of an Angiogram and a drug to see if it can make your arteries spasm, if they do they can clearly diagnose you with Prinzmetal Angina however where I am it's not a test they like to perform, the reason I got was due to the drug the use.

    I was admitted to hospital a few weeks ago due to a Troponin rise and I had a good chat with the Cardiologist and he was quite excited about the pending release of a new drug that not only lowers cholestrol and I was also of the understanding that it would stop all aretery and small blood vessel spasms in the heart.... all I can remember of the name of this drug is CHK9***** , I'm due to see my normal Cardiologist soon so I will ask him for the name of this new drug they are waiting on, it's  not taken orally it's an injection.

    • Sheri54949
      Sheri54949 samuels

      Posted

      Hi Samuels, 

      Thanks for your response. If you are interested you can google Dr. Charles Glueck who is doing the research in Prinzmetal.  He suggested I take 4.5 grams of Arginaid twice a day 12 hours apart.  I'm curious what caused your Troponin to rise. What is that?? I am very interested in the new drug that is suppose to stop corornary spasms.  Please let me know what it is when you find out. 

    • samuels
      samuels Sheri54949

      Posted

      Hi Sheri,

      Troponin  blood test is the gold standard for  letting emergency doctors know that you have had a heart attack, Some doctors still use the old CK-MB blood test in determing a heart attack but as stated above the troponin test is the gold standard now.I've also been told  Kidney failure /damage etc can also raise troponins but I'm led to believe that kidney function tests aid in determining if the kidneys are the cause of a troponin rise.

      I will definately let you all know about this new drug that our cardiologists are keenly awaiting on, the discussion I had with the cardiologist that saw me after my last troponin rise gave me some really good information on Prinzmetal Angina, he described it in laymans terms so it was easier to understand rather than the fancy words my regular cardiologist uses leaving patients baffled or more confused . As I stated above about cholestrol (high) can interfere/ stop the nitric oxide  production which is the main pre cursor for Prinzmetal Angina.... No other cardiologist had explained it to me as well as he did... My retired Cardiologist had diagnosed me with small blood vessels in the heart ( naked to the eye and  in an angiogram procedure) going into spasms and that there is no cure and that I would have to learn to live with it but that's easier said than done when one hasn't experienced this kind of thing....ohhh the pain, If only they knew how painful it gets

    • andrew22534
      andrew22534 samuels

      Posted

      I agree if "they" knew the pain being felt it would change their views a bit!

       

    • seangreen420
      seangreen420 samuels

      Posted

      I would be interested in knowing the name of the new drug that you are referring to here,please.

      Also, please update me on how effective L-Arginine has been for this cause.

      many thanks 

    • samuels
      samuels seangreen420

      Posted

      Hi seangreen,

      ​This new "highly awaited" drug to my knowledge is for high cholestrol patients /weird lipid profiles, it may have other heart treatment elements to it but unfortunately I can't answer that, I'm only going on what a cardiologist had explained to what was causing my Prinzmetal Angina, Due to my weird lipid profile it was eating up the Nitric Oxide in my endothelium which as research has shown when there is no natural Nitric Oxide being produced our coronary arteries and small (micro vascular) blood vessels within the heart go into spasms,

      ​Now the name of this new drug sounds like a police/army canine dog squad smile . I don't know what it's real name but Cardiologist refer to it as K9 SHP, but please don't quote me on that as that may not be exactly it ( my memory is shocking) I'm sure if you mentioned that K9**** to a cardiologist he/she will know what you are talking about and offer you a more in depth and concise information on what it's full medical conditions it could be used for.

    • Bettebet
      Bettebet samuels

      Posted

      Please be sure to post the drug name here!
    • samuels
      samuels Bettebet

      Posted

      PCS-K9 it is for cholesterol and anti angi drug, It's an injectable drug and is capable of getting cholesterol down to absolute 0, It has been passed by the FDA in the States, it's still in trials before it goes to our board here in Australia, not going to be cheap, in the USA it is $ 1200 USD from memory if not, higher
    • samuels
      samuels

      Posted

      I have been having a lot of trouble with my PM Angina last 12 months, they finally decided to try another drug,it's used for PM Angina as well as refractory angina( I think that you could class Prinzmetal as refractory as Prinzmetal doesn't respond well to other types of medication apart from Diltiazem in high doses) and so far it has worked, some say it is a relatively new drug yet others say it has been around for ages, myself I wouldn't have a clue, all that concerns me is that it has worked  so far, sure with some side effects but hoping they will fade away, with this drug you have to have a blood test each fortnight to a month to keep an eye on the levels, it's called Perhexiline (Pexsig) Just Google it there's plenty of info out there on it.
    • samuels
      samuels

      Posted

      Sorry, in my first post I said "anti angi", that was meant to say anti angina* but I'm sure you worked that out smile
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