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
rich5022 Guest
Posted
Hello, are you positive it's prinzmetal? I've had two unfortunate experiences that resulted in my heart muscle producing troponin levels so high the event was diagnosed as an m.i.
Ever since I had my first one on January 16 2013 they put me on beta blockers and then when I went to a different cardiologist he suspected spasms and switched me to a calcium channel blocker. Diltiazem (180 mg)
I experienced both of these episodes while at rest. Both were early in the morning between 5 & 6 am. They told me I'm lucky to be alive. My cardiologist tells me this is a rare syndrome, and only one other patient out of 150 patients he sees on a weekly basis has this condition besides myself. I'm thankful that he diagnosed me early on with this because the hospital doctors didn't have a clue.
This is real because I thought I could be off the CCB's and had gotten approved to do so since I was approaching 4 years without any events (aside from intermittent events of slight discomfort ), well I was so f*****g wrong. After 6 months or so (not all that time was approved) I had another m.i. , but only this time it was worse with more pain. I felt I wanted to be off any and all medication and told my doctor that I'd been off the meds and asked if I could do so with his approval and he agreed. Well that deco almost cost me my life. I still go to him and think he's a good doctor. I can't hold it against him since I felt he was the only one from the very beginning to tell me what the deal was. Before he took me off the medication officially he made me take another stress test which I passed with flying colors.
This is my story and I would like to share with others suffering from the same affliction.
samuels rich5022
Posted
Hi rich,
Prinzmetal sufferers are also prone to MI's, NSTEMI's and STEMI's (which is basiclly an MI anyrate) I've had 2 NTEMI's to date since 2012 and with a grey area to 2 other NSTEMI's in the last 2 onths just gone by.
Where I am is relatively small compared to USA and the UK
and PM angina is rare as you say but our public hospital emergency doctors treat a fair amount of PM sufferers, one ED doctor was telling me she see's and treats 12 other patients including me with this condition. for a population of only just under 1/2 a million the incident rate seems as though it is rare but not as rare as lots think if you get what I'm trying to say 
.
My cardiologist did an experiment with me several years ago , he took me off some medications and halved others, biggest mistake he made and he knows it now, I'm on one of the highest doses of Cardizem (Diltiazem) 600 Mg's for PM angina, it did work but now is no longer all that effective, my retired cardioligist told me many years back patients with severe attacks and get them regularly will build up a tolerence to all angina medication.
What triggers my attacks are cold weather, especially a puff of wind to the face, high emotional stress and extreme heat, rarely occurs on exertion, always happens when I'm sitting watching TV and relaxing, it wakes me up from my sleep, and always rears it's ugly head up out of the blue even when you avoid the main triggers.
I occassionally get angina when I'm slightly exerting myself now but that is due to mild heart disease now, I don't have any stents as the blockages do not warrant stents yet, 60% in RCA and 50% in LAD. every test I've had has come back negative like yours but they are unreliable for detecting prinzmetal angina anways, ECG's doesn't alway if at all pick them up either, the only gold standard way of diagnosing it is via angiogram with a drug that will cause (induce) artery spasms if you are prone to spasms,for some the drug doesn't have to be used because as soon as the catheter is inserted the arteries will go into spasms straight away, but here where I am this procedure (drug induced ) is " apparently " to dangerous of a procedure with a high incident rate so is not performed here.they can detect coronary artery spasms in other testing procedures if you are actually having an attack before they " fire " up the testing equipment.
Another cause for prinzmetal angina I have been informed is extremely high or weird lipid profiles or being hereditary.
amy91711 rich5022
Posted
I had mine finally diagnosed (after 5 years of testing and disbelief by the doctors,) by having the contrast dye inserted into my blood and having them induce a spasm. I think it was an MRI type of machine. It was quick and simple. Perhaps that is a possibility.
terri48396 Guest
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diana88467 terri48396
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amy91711 Guest
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andrew22534 amy91711
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dina43770 andrew22534
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andrew22534 dina43770
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dina43770 andrew22534
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andrew22534 dina43770
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dina43770 andrew22534
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Brodie33 Guest
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Hi
I know exactly how you feel !! I have Prinzmetal also . I also get pains during the day as well as with exertion. Plus with stress !! I feel such a fraud as it isn't the normal angina and few people have heard off it . I also depend on my spray . Plus go through bad spells . I feel so tired all the time !!
samuels Brodie33
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Hi Brodie,
Yes lots of us on here get the heavy / crushing pain during the day as well as at night, this is why I say the laws of science are not always true, They say PM angina starts around midnight and will settle around 8am, not true, as you and others including me already know this. Stress is one of the biggest triggers for PM angina.
Don't ever feel like a fraud because you are suffering from a genuine condition, there will always be doctors, especially emergency doctors that will not believe you when you tell them you have PM angina and fob you off as a panic attack sufferer. I have had my fair share of those kinds of emergency doctors. Now that I'm recognised as having this condition I am treated accordingly now (treated with respect, never fobbed off anymore , my condition is understood now by the ex "non believers "
, I will encounter young emergency doctors that have never heard of prinzmetal angina. The spray, I can go through a bottle of that in less than a week. I have a management plan in place that is working for the moment with paramedics, emergency doctors and my GP, I can have up to 25 sprays in a single bad attack, I get one once a week during winter and up to 3 times a week when under lots of stress. the 3 times a week flared up again this year due to extremely high emotional stress. I have to always have a troponin blood test each time I present and an ECG, if nothing is happening pain relief is given and I'm placed out into the waiting room to await the results of blood test, Nursing staff are excellent, they keep an eye out for me if I run into trouble in the waiting room. I use endone for the pain, I know it doesn't stop the spasms but it sure deadens the pain, when the endone doesn't ease the pain that's when I've been told to start to worry and call for ambulance, that's happened a couple of times this year. Cardiologists plan is if the spasms continue for longer than 30 minutes and not being relieved by GTN then call for an ambulance, As I said I will have 1 bad attack a week, any day of the week, no set pattern and always at rest, I'm embarrassingly a very regular visitor to our emergency department with this condition. I can avoid these trips but I don't want to always rely on the endone, although, unfortunately I have had to rely on them this year to reduce presenting to the emergency department.
Brodie33 samuels
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cher42845 Brodie33
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samuels Brodie33
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Hi,
Yes mine have been getting worse this year, the flip flops. I have been getting what they call AF on the ECG when it does the flip flops, also has been showing up as PVC's, now after the flip flops have settled the ECG shows up with prolonged prolonged QT's