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

    I stopped taking Cartia XT last Wednesday I feel better, has anyone else notice a problem w/certain meds?

    Thursday I'm getting another opinion, taking my EKG with me. Guess we'll see what I hear, later.

  • Posted

    Hi Cathy,

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    I had a turn of events myself and have only been out of hospital myself for 2 days..A TIA was suspected, if it's not one thing it's another....lol...

    A question if I may..... does anybody here smoke ? They tell me nicotine causes coronary spasms, here's a little story I actually had a paramedic that was really tuned in on the workings of prinzmetal angina and he was explaining to me it's to do with Nitric oxide...here's a bit of info I just pinched from Wikipedia as I can't remember word for word of how the paramedic explained it to me .

    "It has been proposed that vasospastic angina is associated with enhanced contractility of coronary vascular smooth muscle due to reduced nitric oxide bioavailability caused by a defect in the endothelial nitric oxide synthetase enzyme which leads to endothelial function abnormalities" I don't know why Cardiologists down here can't make explanations as to how this paramedic did .

    I am of the belief that there are quite a few of us that have this rare condition where I am but as I said they say nothing can be done and we have to learn to live with it ......

  • Posted

    Hey Neale! I am aware of the whole nitric oxide thing. This has been known for a long time. Studies had been done showing it worked well when given as an infusion. The issue with it is that nitric oxide has a short half life once in the body. Much research has been done on how to make is last longer once in the body, as we can't walk around our entire lives hooked up to an IV, so that's not an option. There is some good news though. When the body breaks down the amino acid L-arginine, a bi-product if that is nitric oxide. Nestle makes an L-arginine supplement that was originally marketed for wound healing (by dilating the arteries, more oxygen gets is delivered to all of the tissues, but most importantly, around that wound, and the wound heals faster). Nestle's L-arginine comes in a powder that you mix with water and drink. The recommended dosing is 4.5 grams twice daily. But since it has such a short half life, is I mix two doses on a large water bottle and sip on that from the time I wake until the time I go to bed. I get the same overall dose within the 24 hours period, just spread out more eveningly, and hopefully making it more effective. You can order the supplement through Amazon. There is a cardiologist in the U.S. doing research on his using the Nestle brand, which is how I heard about it. His name is Dr. Gluek (can't remember his first name right now) and he is from Jewish Hospital of Cincinatti.

    I have been on pain management therapy for a few months, and it is helping. I wouldn't advertise that they are doing that for you, as many with an addiction problem will do whatever they need to do to get their fix (rob you, break into your house).

    I did some research and found the name of the most recent surgery I mentioned. It's called an autotransplant. I don't have time to explain right now, but while researching this, I found some very curious things about possible causes of Prinzmetal. Very interesting, but nothing I can explain in one sentence, so I'll have to do so in the near future.

    Blessings,

    Cathy

  • Posted

    My symptoms have been diagnosed as Prinzmetal but after some further reading I think my original Cardiologist was leaning more to this "micro vascular" angina...Everything has been spoken abouit Angina,Prinzmetal and CHD but nothing has been spoken about micro vascular angina.As I said in an earlier comment my original Cardio had retired, well I was led to believe he had but since found out that he hasn't and I will be going back to see him as soon as an appointment is available....He's the one(and others) that said I have to live with it as there is nothing "out " there that will cure it, there's plenty of medication that can be used to attempt stopping the spasms, See down here they don't like using invasive procedures, they are even very apprehensive in doing repeat angiograms,one cardio wanted to do a 4th angio on me and put wire mesh into an artery to test blood flow pressure,he asked me what did I think....My reply was ....No you're the doctor what do you think, is it viable, his reply was that he "didn't really" want to perform the procedure for the simple reason that I have had 3 angio's in 12 years and wants to preserve the artery for when they really need it....(This is only my case) It's so frustrating I like everybody else have these spasms at least once a week that requires me to call for an ambulance, it's becoming a vicious circle at the moment ,doctors and nurses must be sick of seeing me being carted in all the time, even though they say it's better to be told it's not a heart attack and have it checked out ,a lot of paramedics must feel the same way,I have encountered 4 paramedics that can be pretty ruthless in their attitude towards me with some of the things they have said to me...One of them here a year or so ago had my daughter in tears because he was "blowing me up" in my own home and my daughter heard everything, when asked if she would call our emergency number her reply was "No" because Dad will get into trouble..That had to be quickly addressed by senior staff at our states ambulance service.
  • Posted

    Hi

    Cathy thank you for your very useful message. I have now been referred to a specialist in London and will let you know what they determine.

    Does anyone take ranolazine? I seem to get more issues with it having a healthy heart than the problem itself, like breathlessness , pain in the bladder.

    Is this a common drug for prinzmetal

    Cathy which country do you live in? I am uk.

  • Posted

    I have had Angina for 10 years but after my last episode the doctors have decided I have Prinzmetal Angina, I have had three very bad attacks where my troponin levels have been elevated and after one of these attacks last week (whilst in hospital) I had another attack (about 20 hours after the first one) where my heart went out of beat and I really thought that it was the end !!!! The pain was horrific and lasted quite a while !! I am terrified in Case it happens again because I know that the next one could be it !!!!! I get told that I have had a heart attack and then am told it is Prinzmetal angina !!!!! Is the troponin levels being elevated damaging my heart and why this second attack where my heart went completely out of beat !!!!!!
  • Posted

    Hi Windylindy

    Any type of Angina can lead to an MI (Myocardial Infarction) I have been told I suffer Prinzmetal Angina as well and have had 2 heart attacks (Mild) but it still puts the wind up you, scary stuff. My pattern lately has been severe attacks once a week where the chest pain comes on unpredictablely, I could be sleeping,on the computer,just sitting watching TV and working.

    Being honest here... it will continue to haunt you if indeed the diagnosis is correct..In regards to raised Troponins you wil get different answers from various doctors and cardio's, they tell depending on how high they come back (positive) anything from the common cold , chest infections down to high blood pressure can give a positive trop's result...if it's higher than the International standards it is put straight down to a heart attack....I was a bit confused by some of the doctors explanations on positive trop's because all of the research I have done all point to a heart event on or above the International levels . Hope you are starting to feel better and have got some relief for your chest pain

    Neale I've never heard of that drug you are talking about, I use to be on Asterix which I believe is the same as Catria ,I never had any issues with Asterix but it is documented that Aspirin can cause problems with the gut especially if you have an ulcer...some people can even have allergic reactions to them I believe, but all in all I am told it is a safe medication because here where I am (Australia) a prescription is not required ...it's an over the counter medication.

    The medication regime they have me on is all at the maximum dosage with the exception of Clopidogrel That was switched from Asterix when I had a suspected TIA

    here's what has helped me but not completely got rid of it

    Nicorandil 20mg twice daily (Morning and Evening)

    Cardizem (Diltiazem ) 360mg once a day (mornings)

    Monodur SR (Isosorbide Mononitrate) 120mg once a day (Mornings)

    Clopidogrel (Plavix) 75 mg once a day (Mornings)

    GTN (Nitrolingual pump spray) As required.

    I personally have found that the Nicorandil and Cardizem dosage increase has reduced the amount of times I get the Prinzmetal Angina...there are as with all medications side effects, the most common side effects with my medication regime is headaches and feeling dizzy when getting up to fast, the head aches dis-appear once your body adjusts to them but I have to still be careful in getting up.

    Back to you Windylindy I forgot to mention in regards to Troponin levels and damaging your heart, My Cardiac re-hab nurse had told us that the heart is like our liver it can generally repair itself(slowly) from a heart attack...this is totally dependent on how bad a heart attack you have had. Sometimes they can pick up my heart damage on an ECG and sometimes it doesn't even show....so don't always rely on an ECG for a heart attack...this is what the paramedics look for in first response .. you may be having chest pain but the event may have not happened yet ,obviously if they pick something up upon arrival the event may of already happened but not neccassarily always the case....the Troponin blood test is the golden rule for that....

  • Posted

    Thanks Samuels,

    Each time I have had a bad attack and been taken to hospital my troponin levels have been elevated high enough to be told I have had a mild heart attack (3 times) not sure how many times I can bear this as the pain is agonising but the thing that frightened me even more was the attack on the second day after being in hospital where the nurse said my heart had gone completely out of its normal beat !! (Seems strange to me) !! I suffer from arrhythmia where I can faint but no pain but this was even more agonising then my Prinzmetal/heart attack absolutely horrifying !!!! But since coming out of hospital and being on Plavix, calcium blockers and Bicor etc etc I have been feeling ok just slight pain so fingers crossed it's all under control !!!! I am just terrified that the next attack will be the big one !!!

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  • Posted

    Thanks Samuel for posting your drugs. I think nicorandil is the one to go for. Is the 120 mg isosorbide one

    slow release for the day. I found that debilitating . I will let you know what my London specialist

    recommends .

  • Posted

    Hi Neale,

    Nicorandil did help me, I was told it has a 12 hour period in our system, hence the morning and night doses, I found it reduced my pain but at least once a week I would still get a severe attack, An emergency doctor told me to keep a chest pain diary....when does the pain come on , what time, how long did it last for and what was I doing when the pain came on...I decided to do this and found out some interesting things...What I found is that simply just resting it comes out of the blue, Stress is a big factor and over doing things work wise, labour intensive kind of stuff...Winter time is the worst for me but I will have to see how I fare this winter as I wasn't on Nicorandil last winter ...even a puff of wind to the face bought on the Angina.

    Yes the Monodur SR(Isosorbide Mononitrate) is a slow release , the only problem I had with that medication was headaches for the first week and to be honest I don't really know if it is really working but I did notice great improvements when placed on Cardizem 360mg and the Nicorandil, the GTN spray is a quick fix and your body can get immune to that if used long term...I.E everyday but I don't have to use the GTN everyday now just that once a week when I get the severe attacks.

    I have been doing a fair bit of research this week and as mentioned previously above about Micro Vascular Angina ..I think my symptoms fit the bill for that better than Prinzmetal Angina or even the other 2 forms of Angina better, I do have the start of CHD but am hoping I have reversed that, I have a baby blockage 50-60% occlusion in the RCA (Right coronary artery) after having 2 mild heart attacks myself what has some baffled is that the damage caused by these 2 heart attacks only shows up on an ECG once in awhile, No-one can explain this, perhaps the Cardiac re-hab nurse is correct that the heart can repair itself after a mild incident but even if that was the case why does the damage only show up once in a while....baffling to me and the Paramedics that get the chance to see it and then do a repeat ECG and it's gone ....lol. My first heart attack I got the symptoms but the ones they speak of primarily for heart attack had disapated and I was left with a dull ache in the back and indigestion...ECG was normal but Troponins came back positive for an AMI or NStemmi

    Hi Benny,

    I can 't take medications like Champix , I get rather disturbing side effects from SSRI's and related drugs so my GP is not wanting to take the risk by putting me on them. I'm actually of the belief that there is something more addictive to cigarettes other than Nicotine, I firmly believe there is another ingredient or drug in those stinking smokes as well..Yes I hate the smokes but I end up going back to them....I'm using every NRT this is available to me but they just don't seem to be over coming the cravings

  • Posted

    Hey guys! Been away from the site for a couple weeks. This month started with the MI/cardiac arrest I had on March 3, and has continued all month. Symptoms have been AWFUL! I've been vomitting a lot more with it lately. Yuck! My arms look like those of a heroine addict from all the IVs and lab draws. I have only been out of the hospital 5 days this month. Crazy!

    One of you guys asked where I lived (can't see who posted it now). I'm in Canada.

    I had something great regarding my cardiac management happen a week and a half ago. On one of my few days outside of the hospital, I was able to travel 5 hours away from my home to Toronto and see a cardiologist that is known for his research into Prinzmetal and medications used to treat it. Name is Dr. Gary Newton. From his standpoint of a researcher, I'm a great case to "investigate". Aside from being great at what he does, he's seems to be an equally great person and totally understood how disruptive this is to living a happy life. He was the one who brought up the impact that it has on my life and the lives of my family! I am so encouraged that he wants to manage my cardiac care from here on out. He's going to be getting a group of specialists from various disciplines (one guy was recuited from France!) all working on my case, and his office will coordinate my visits out there, as it is five hours from my home. And with him only looking to be about 50, I shouldn't have to worry about him retiring anytime soon.

    I hope that this posts provides encouragement to others out there. When things got so bad I thought I couldn't handle it any longer, what seems to be the PERFECT cardiologist for me comes into the picture. I will of course keep everyone updated on any info I find out about therapies that are being researched by this guy and anything else that might be helpful. Stay positive. Everyday IS a good day, if you make it that way.

  • Posted

    Hi Cathy,

    Sorry to hear about your mis-hap and am so glad your are recovering even if it's slowly. To many specialists are a recipe for disaster sometimes, I have witnessed this first hand but goodluck and I hope they find answers especially for you, No doubt your Cardio doctor )will be consulting with mine (Australian Cardio)...lol..he's a world renowned cardiac doctor

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    Like you I have a whole plethora of cardiologists looking at my current situation (with in my own country-Australia) and they can't come up with anything for me,every procedure I have read about or even that one you mentioned to me...they say to me "we don't perform those procedures " they are either "outdated" and don't work or we don't have the surgeons available to do those procedures . I'm actually hoping your specialist does indeed have make contact with my specialist to run some ideas past him so that mine may think of something along the same lines for me....lol..My current cardio has taken over from my original one as he left our public hospital and is now only working in private practice,I'm one of the lucky ones that can go see him anytime at no cost as he bulk bills our government (Medicare), if it wasn't for my dis-ability pension I'd be up for $180 AU a pop

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  • Posted

    Hey Samuels! I'm not concerned about having too many specialists working on my case. As a former ER and critical care nurse, I've got a good knowledge base to start from, and the cardiologist I'm seeing in Toronto is the one directing my care. Everyone else is ancillary. The key is making sure everyone on the team knows their place. As with any team, when everyone knows their position, everything can run smoothly. The other people he's consulting also aren't other cardiolgists. I was in a hospital in Detroit recently, and they said in is world renowned for the work he has done on Prinzmetal (so our docs already be aware of each other). There is a history of autoimmune disorders in my family, so there are two rheumatologists from France he is consulting (one specializes in vascular autoimmune disorders). He also wants me to talk to a transplant surgeon. I'm not willing to pursue a transplant at this time because there are people that have received hearts that did not have Prinzmetal, who develop it all over again. As I nurse I have cared for many patients with transplants. If I knew it would fix the problem, I might consider it, but just living with a transplant has issues of it's own.

    I've had issues had statins to, but my problem is different. I don't have any of the muscle cramping issues that many people get, but my liver does not tolerate them. Everytime we try restarting a statin, my liver enzymes elevate within a couple weeks and the longer I'm on them, the higher the enzymes go. We have tried four different statin and it's always the same thing. In general, liver enzymes do elevate more frequently and higher in people that are on both a calcium channel blocker and a statin. Given that Prinzmetal is his speciality, I'm sure my new cardiologist has dealt with this before, but I'm interested to see what the answer is.

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