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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.

14 likes, 699 replies

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  • Wannabwell
    Wannabwell Guest

    Posted

    I'm am also having esophagus spasms and severe upset stomach. I am going to gastroenterologist in 2 weeks. For my prinzmetal I'm taking amlodipine and ranexa and metoprolol. I tried verapamil but my bp drops too low and the imdur I can't take because of the headaches. I have a history of migraines that are fairly controlled. I only have a few a year now. Used to have A couple a week. My eyes burn bad all the time now I think because of the meds, idk. I'm not on face book so I can't join in on a lot of discussions to see what others are going through.  If I'm lucky I get 5 hours sleep at night but it's usually 3 to 4 hours. I feel like a zombie. If the prinzmetal doesn't keep me up my severe restless leg does and it's not just in my legs. I have it in my legs, arms and trunk. It's horrible. Does anyone have that one in common. I've had it for years. I take ropineral for it but it just doesn't work sometimes.  Thank you all for your support. I was feeling very lonely and helpless to a degree that Is leading me to bad depression.  Regarding the nurses and docs not taking me serious anymore, I can't file a complaint with the hospital because my family member works there and I fear for her job if I do. We live in a very small town with only 1 small hospital. So I'm at their mercy and I'm screwed. The only other close hospital is an hour and half away. 
    • cher42845
      cher42845 Wannabwell

      Posted

      HI I have had Prinzmetal angina for 21 years. metoprolol made me worse,

      Any Beta Blockers made me worse. In the recent years I started having hypoxia and I got worse and was very bad due to the low oxygen to my heart. Decc 22 thye did Trachebroncoplasty adn repairs trecha & Bronchia from colapsing. I went from attacks eery 1.5 - 2 hours a day done to 1 every few days. But I am on havey load of calcium channel blockers. Nicardipine 50 2x a day, Diltiazem 120 1x day, Verapimil 1x a day, when angian breaks thru I take Nifedipine cracked under tongue if angina stil ther alos sublingual Srpay every 5 seconds up to 3x, at 15 minutes if BP above 110 we d another Nefedipine under tonque & take  Isosorbide dinitrate , If all that fails I go to Emergency. I am a severe case. I started out wit just diltiazam back when I was 41 & that took care of it for years with a episode occassionaly. Then attacks got cloer and more sever took Verapnil and was ok for yeards. Until 2010 when I went bad. I have no blockages at all. Watch for triiggers like cold, cafiene, oxygen dropping, sometimes meds like the for me Dicyclomine,Nebivolol, Ergonovine, Methacholine, Metoprolol, Ergonovine, Nebivolol(BYSTOLIC), Methacholine.

    • samuels
      samuels cher42845

      Posted

      Hi cher, I notice in your list of medications that you take Ergonovine, why did they put you on that if you have prinzmetal angina ? this is the drug they use to diagnose the condition..... it sends the coronary arteries and blood vessels into spasms if you are  suspected of having prinzmetal, if your arteries don't respond to the Ergonovine...I.E go into spasm, you are the diagnosed as not having prinzmetal angina, there is also another medication they use to provoke the spasms but I can't think of it's name.

      This kind of testing "apparently"  isn't done where I am as it's "deemed" extremely risky.

  • kingatecavies
    kingatecavies Guest

    Posted

    Do any of you suffer with Raymauds?

  • amy91711
    amy91711 Guest

    Posted

    My cardiologist sent me to a pulmonary specialist, and what a God send. Everyone should get evaluated. He asked questions that seemed odd but he knew what was going on. They believe that my Prinzmetal and coronary arterial spasms are caused by asthma or allergies. Explains the symptoms we all suffer from that seem unexplainable. i.e. migraines, cold weather responses, and the list goes on. 

    Having several tests done. I'll keep you up to date as to what happens.

  • j90889
    j90889 Guest

    Posted

    Migraines, Raynauds and heart spasms can be symptoms of magnesium deficiency.  3 years ago I had a heart spasm that lasted over 15 minutes and damaged my heart. I was a healthy 47 year old.  I was the mystery diagnosis patient. Was treated with many medications and only felt worse and worse.  A year later another spasm landed me in the hospital. This time I asked for a new cardiologist. He said my symptoms were probably caused by magnesium deficiency . I take a multivitamin and magnesium supplement every day.  3 years have gone by and I no longer have heart spasms. Ladies beware-taking calcium supplements while you are magnesium deficient can cause heart spasms. Research magnesium deficiency. 
    • cher42845
      cher42845 j90889

      Posted

      Yes that is so true I am also on both magnesium & Potasium supplements. Also when you do have heart issues the potasium & megnesium is used more rapidly by your body. Even though I tale 450 magnesuiusm 2x a day and 650 potasium 2x a day at times where I present in ER they still have to start a drip of Magnesium or potasium,

      of course the depletion due to the medications like diretics, sugars, food additives  magnesiusm & potasium.

  • koldo
    koldo Guest

    Posted

    I suffer prinzmetal angina for 2 years. As in your case I suffer pain also at any time. The pain started with physical activity but after being diagnosed it went worse (some betablockers provided prior diagnose worsened the angina).Now I have niphedipine and diltiazem and is more or less under control. Anyway I have bad periods in aleatory clusters. Not cause-effect detected. But in bad periods any soft physical activity produce angina and I have soft pain in my chest during the day and anginas at night (around 2:30 AM as most usual). Doctors have not clues about how to solve it and I think everyone of us have to deal with the way the disease develops in our body...

    I’m a novice dealing with it but there is one thing that I actually know: We patients have a lot to say in the treatment, at less in the doses. Calcium blockers are the key (till now). I use a basic dose of calcium blockers (niphedipine,diltiazem) during good periods to limit secondary effects and I increase doses during bad periods. They don’t reach to control totally the anginas but limits the severity.

     

    This doesn’t heal you but ..:You are not alone!

    Best wishes and be strong.

  • Kbcutie
    Kbcutie Guest

    Posted

    Hello I have just joined the forum. I also have Prinzemetal angina and it can occur at any time but mostly afternoon to evening. I take 2000 mg of Ranexa per day so that has really helped me. I have not had to do my nitro in almost a year. Hope to find others on here with good information!
  • fiona82663
    fiona82663 Guest

    Posted

    How lovely to find you lovely people. I was diagnosed in 2008 . Currently I have been experiencing an acute phase for 2 months which is overriding any medication increases. Just out of hospital where the cardios and the nursing staff all think it's psychological and I'm being a prima Donna by insisting on being referred back to Professor Kaski. I moved away from London 5 years ago and with no cardios locally believing in Prinzmetals I have gone into cardiac arrest requiring an ICD implant , pulmonary oedema due to heart failure caused by years of spasm and then put on beta blockers to start it all off again ! I just want to cry now. I should never have left Professor Kaski. I find the uninformed judgement of nursing staff most upsetting when I've had yet another MI and at their mercy for a few days. Sorry for being so negative. I'm so relieved to have people who understand . ❤️
    • samuels
      samuels fiona82663

      Posted

      Hi fiona,

      Yes I believe we have all been in that boat at some stage with the Prinzmetal, I find that a lot of doctors are ignorant of the condition here as well and say exactly what you have just said. I have been rather lucky over the years, senior emergency doctors have been really good about it and understand the condition, sure you get the occassional ED doctor that will carry on at me and say it's all in my head blah...blah... even the paramedics here seem to understand Prinzmetal.

      Iv'e had 2 NSTEMI's, question mark on the 3rd one, I don't think the troponin was up high enough for them to catergorically say it was an NSTEMI 3rd time around. It was explained to me in laymens terms, this Prinzmetal Angina and what the cause of mine was, it made sense, I was first diagnosed as having small blood vessels in the heart spasming but it got worse as time went on. Just like everyone else that suffers it mine comes on at rest, cold or emotional stress and no matter what dose of medication I've been put on, Cardizem in high doses did help as did the Nicorandil, recently put onto Perhexiline and that helped but the spasms are still an ongoing issue for me, I'm in ED at least once a week, more in winter. Since the Perhexiline helped I'm just wondering if they should bump it up to the highest dose and see how I go from there but in all honesty I don't think any medication will stop artery spasms when it's cold or when we are under a lot of emotional stress.

      Welcome to the forums, you will meet lots of very nice people in here that have experienced this horrid thing and they all have a lot of good info and support here smile .

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