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

    hi Samuels,

    I have had two attacks in less than a week and yes, the ER people all know me well a I've had this for over 12 years now, although it was only diagnosed as Prinzmetals a few years back. My consultant anaesthesiologist calls it "Syndrome X" because the doctors neither know how to prevent it or the best way to treat it. Bed rest and pain relief is the only thing they can do. I had to smile ruefully when I finally got a bed on a ward last time and two hours later the nurse wanted me out of the bed to sit in the chair for my breakfast. If the prinzmetals was the only thing I was dealing with this still wouldn't have been a good idea, but I have other health issues too. I refused. She was a bit upset with me but I told her there was precious little use coming in for bed rest if I was turfed out of the bed at the earliest opportunity!!! Never feel embarrassed to call an ambulance, they are the first people to tell you it is their job and they don't want to be taking you in mid heart attack if an earlier call could have prevented it. Also, my docs used to say it was all in my head, but now they agree that it's not. So don't worry about what they think. you and we all know that it's real and it needs urgent correct help so hang i there!

  • Posted

    Samuels, sorry to hear you're having a rough go. I posted earlier about the surgery for this (sympathectomy). In your case, I would strongly encourage to talk to your cardiologist about it. Like I said, in some cases, it cures it all together. In my case, I still have microspasms a few times a week, but I am no longer having the larger vessels spasm (meaning the pain is less severe, there is less of a chance of me having another MI, and if I have another MI, it will only be a small one). The surgery isn't for people that only have pain a few times a month, but in your case with you already having an MI and frequency you are having issues, you may be a good candidate. It made a difference in my life, as GTN infusions don't even work for me anymore. Good luck to you and I hope this was helpful.
  • Posted

    Hi Josie and Cathy, Thankyou for your kind words and information.I'm still looking for your earlier information Cathy in regards to the surgery you spoke about.

    Yes Josie Iit was the same as me they only put a name to my condition a few years ago as well,I don't think they teach the new generation about Prinzmetal as I have had more than a few doctors ask me what Prinzmetal angina is....I have only just been out of hospital 2 days,I had bad chest pain on Saturday and had to call ambulance, I'm even well know with the paramedics,I have had to make a complaint against 2 of them already in the last year, I will continue on with that story directly,back to Saturday, The usual occurred, paramedics did their stuff started to get on top of the pain on the way into emergency, pain was still not completely resolved upon arrival at our emergency department so another 7.5 mg of morpheine was administered in total I had around 15 - 20 mg as the paramedics and the regular ER doctors know what gets rid of the pain, My first blood test came back negative but the repeat one came back positive at a level of 0.05 (Troponins ) They informed me it was borderline so was admitted and seen to by a cardiologist the next day , He isn't my regular cardiologist but he knows my story as I have been spoken about lots between cardiologists, There was no mention of another AMI but I sure as hell fell like I have had an event because I feel the same way as I did when I had my first AMI, anyrate back to what the cardiologist had said to me, he basically has shoved me in the "to hard basket" well that's the impression I got from him, he also increased my Nicorandil asked how I felt, I told him I had a few niggles earlier in the morning but at the time of talking to him was pain free, He told the nurses to give me the increased Nicorandil dose and keep an eye on me for 3 hours then I could be dis-charged, all went good in fact was glad to get out of there....lol....I walked down the passage way to the lifts and things just didn't feel right, no chest pain just all giddy and weak I was about to turn aroround and go back to the ward and let them know, I had to lean up against the wall...lol... The lift door opened and out popped my mother so I didn't bother going back to the ward I just put it down to after effects of the morpheine the night before, I went back to my mothers for the night for a bit of R and R (rest and relaxation ) but the next day I had to call the paramedics again....they were great but the doctor was far from professional, she made me endure my pain for well over an hour ,she asked for my pain score on several occasions the first time it was fluctuating between 7-5 with the use of the GTN but crept back up to 7 every 10 -15 minutes, In the end when I was transferred around to another unit for a repeat blood test I had to ask one of the regular senior doctors for pain relief, he had no hesitations in giving me any , it must just be these young registrars that aren't as giving as there senior doctors, They are trained to tell if a patient is a "Morpheine seeker" and I have been told that I'm not one of them as they can genuinely see that I'm in pain however they can't use it to much as it can cause stomach problems, so whether that was the registrars thinking I don't know, I don't want to rock the boat with the ER but I am seriously considering reporting this doctor that made me endure my chest pain radiating up into my left shoulder for and hour or more.On a good note all my blood tests came back negative so was discharged 7 hours later, I rested up yesterday and doing the same today with no incidents.I have had a nurse tell me that my troponins have come back quite a few times in the range of 0.01 , 0.02 and 0,03 but that is not enough under the heart guidelines to consider an event

  • Posted

    I hope you get some good help for this very soon Samuels. I don't try and get further than I am because I have spent the last year fighting cancer and need all my strength for that. The angina just has to take a back seat for now. I wish you all the best x
  • Posted

    Thought I better wind the previous comments up as it was getting a bit long ...lol but here are some encounters I have had because of this prinzmetal angina.

    I've had 3 paramedics go off at me , my partner sorted one out, she(female paramedic) accused me of eating junk food and to try and lower my alcohol intake,I have extremely high cholsestrol so junk food is far from my mind and I haven't touched alcohol for 20 years....the other paramedic came into my home and started an argument with me saying I was wasting emergency resources and that I should be finding other ways in like calling a taxi or getting my mother to take me in or go see my GP when it occurs again....I said to him mt GP will only call you fella's anyrate so that's out, If I ask the taxi to get me into hospital pronto they are going to ask questions like what's wrong with me and refuse to take me and then my mum, I said god sake man she's 71 years old you expect her to come at the drop of a hat she has her own medical problems, cut a long story short when this paramedic carted me off my partner came home from work not long after I had left and found our 10 year old daughter crying ,I was discharged the day after and when my partner came home from work that afternoon she asked me what had happened...I told her that t one of the paramedics was carrying on in our lounge room while our daughter was out in the dining room he was arguing with me and saying I was wasting emergency resources and he was sick of coming to me..I reported this incident and it was dealt with and the chief paramedic officer must of done some research on me and my condition and he told me to continue to use our 000 emergency number when chest pain occurs because there will be a time that I will have another heart attack, he was really good.

    Second paramedic was a bit more polite about it but he gestured the same thing about it, my reply was simple I said talk to your chief paramedic officer about it he knows the story so go sook to him, he shut his mouth straight away, I reported him as well, The big boss from in town came out and had a chat with me, I had told him if I wasn't in so much pain on both occasions I would of dropped both paramedics where they stood , he said I wouldn't of blamed you as their conduct was very un professional, they also sent out a senior female paramedics officer to have a chat to our daughter about if she ever had to ring 000 never to be frightened to because your dad really needs help when he has these pains,she was excellent with our daughter

  • Posted

    Ohhh Josie Im sorry to hear about your cancer I hope that all is improving on that part they have made great advancements in treating cancer now days and I hope you fit this bill in having your cancer coming under control or completely dissolved
  • Posted

    Hey Samuels. Just scroll through the comments to find the info I posted on the sympathectomy. I posted it on Feb 6 I think. I'm currently in the CCU. Had another MI yesterday. I'm 37 years old and this is my second one. Feeling pretty old right now.
  • Posted

    Yes found it thanks Cathy, I will be discussing this with my cardio next month.

    I had a another AMI a week and a half ago although they aren't saying much just making up exscuses , I had my first AMI at the age of 46, a suspected TIA December just gone then another AMI last week, feeling much better this week but my word last week was a shocker it felt like I had been hit by a bus, No Angina since Friday just gone.

    I had a suspected MI at the age of 35 from memory, My cardio put it down to the statin that I was on

  • Posted

    I have recently been diagnosed with prinz metal and over the last three weeks had troponin levels reaching

    10000 ng/L . And twice at 3,600. I have lost all my confidence and at home now after three weeks in

    hospital . I am horrified to read that these attacks do not go away. I had one heart attack 6 years ago which

    was Undiagnosed but nothing since. The hospital now assumes that this was also prinz metal. Does anyone have long periods of no attacks?

  • Posted

    Hi seem to be right there with you. Have symptoms more than not. Last summer I was told it looked like I

    had a heart attack after a EKG went to hospital had tests & cath. After which telling me heart looks great

    along with arteries. Then telling me I have Prinzmental angina, then said you should retire. Since that time I slowly & continued to get worse, now today my doctor decided that this issue should only last for a few

    minutes & basically I shouldn't be having the problems I'm telling him --Its mental & I'm not dealing with

    stress so take Effexor & Xanax. But last summer he put me on CartiaXT & Nitro. Now I at my wits end I

    really can't believe what he is now saying. Has anyone else also been told these extremes? Right now I'm

    not sure what to do, I've stopped working because many days I'm worthless & it has caused depression &

    anger. I have worked more than the average person & it so hard to stop.I'm just over 50 & mentally feel

    young. Should I get a different Doctor? or take drugs I don't want? Hospitals are history for me they say nothing they can do-then say your close to mentally stressed out & this is it.

  • Posted

    Hi

    I ended back in hospital two nights ago because I could not get rid of the pains but luckily the troponin was

    negative and they have doubled my nitrate pill from 10mg to 20mg twice daily and today I am fine.

    this certainly is a Disabling condition but I do believe we should have symptom free periods. I wonder if there is a private messaging ability I can't find it? I also wonder if there is a society for people who suffer from

    Prinzmetal and also if there is any research being done I certainly would be interested in getting involved. I am going back to see my consultant next week and will ask some more questions.

    I retired after my first heart attack 6 years ago and been pain free for 6 years. It was a very stressful job.But I have no intention of being a victim to this for ever!!!! I also have a relative in the medical profession and will

    research through them more details. I also believe there is a guy in London who has some interest and has devoted sometime to this so will try and track him down.

    We won't be defeated!!!!

  • Posted

    Hi Tammy2468, Yes I have had 2 young doctors(Registrars I think we call them here ) tell me it's all in my mind or panic attacks,I arced up at one of them last week and said look here if it was a panic attack I wouldn't be sitting here in your waiting room,for you see I'm a very regular person in our emergency department once or twice a week,and they have a plan in place for me,they take the first lot of blood from me either in emergency when there's a bed available or out in the waiting room,them I'm shipped of to what they call EMU (Emergency Medical Unit-provided my first Trops have come back negative) I'm on the maximum dose of everything for spasms but the medication only lasts so long,they say it last 12 hours but my spasms are back 4 hours after taking them,Nicorandil and Cardizem helped me the most but did not completely stop the spasms (Prinzmetal Angina) I had an appointment with my cardio Monday just gone and he is recommending a pain management plan I can't think of the name but it is also used for back spasms ,from what I understood you stick these pads in certain spots on your back and everytime you experience the chest pain you touch a button to start a type of massaging/tingling effect to relieve the pain,I spoke to a friend about this and she said her father had one of these for his bad back and did nothing for his back pain so now I'm a bit dubious if it will have any effect on chest pain. I'm making an appointment in the morning to go back and see my original cardiologist, he told me he was retiring but I have found out he never ended up going through with it so I'll be going back to him,he's on the ball , he's a professor of Cardiology.

    If you are not happy with what your current doctor is saying I think you should seek a second opinion,my cardiologist said My heart was fine and I have 30 odd more years left in me.....12 months later I had an AMI and a small blockage 50-60% in the RCA ...You're not alone I'm afraid to go out for the fear of having another heart attack or even a mini stroke again...perhaps trying to re-train my brain might help me to get out and about again

  • Posted

    Samuels, the device you are speaking of is called a TENS unit.

    Neale, there is research being done around the world, you just have to find out if there's stuff going on in your area. I'm from Canada, but live near the border to the USA, so I look into things in both countries. An over the counter supplement that many Prinzmetal suffers are finding effective is called L-arginine. There has been much researchdone on this. There is a cardiologist named Dr. Gluek at Jewish Hospital in Cincinati, Ohio, USA that is currently doing a study on this, and you don't have to go there to participate in it. You should be able to Google his name to find him. What he recommends is taking 4.5 grams of L-arginine twice daily.

    At 37, I had my second heart attack Monday morning. My heart also stopped again. I'm blessed that both times my heart stopped I was already in the hospital, so I got treatment right away. If either one of these had occurred at home, I would be dead.

    Appearently there is another surgery that is just starting to be used for cases of Prinzmetal in which there is a high likelyhood of Prinzmetal killing the person. A cardiologist just told me about it today. He didn't know the name, but what they do is open your chest, completely remove your heart from you, cut all the nerves and blood vessels, so the heart is no longer attached to your body, and then put it back into you and hook everything back up. The cardiologist said what happens is that by simply cutting everything, it creates scar tissue along all of the blood vessels and nerves, so it is impossible for an impulse to travel down any one of these that might have caused a spasm. They are giving me a referral to be evaluated for the surgery. The cardiologist said they try a sympathectomy first and if that doesn't work (which is the case for me), and the Prinzmetal is to the extent that it is life-threatening (which is the case for me), then they consider doing this. They said this is only for people having multiple heart attacks and their heart stopping, and not for someone who just has the pain, as the surgery itself does have some risk.

    When I know more about the surgery, I'll post it for the unfortunate people that may be a candidate for it. Hope everyone has a pain-free day!

    Cathy

  • Posted

    Hi Cathy

    Thank you for for your posting and I am so sorry to hear that your hear stopped during a spasm. I live in the uk. The spasm I have is the left ventricle and is not a major artery but I have now had 5 heart attacks in total. Other than that my heart is perfect! I will research dr gluek thank you. There are a lot of medical reports

    coming out of china where I believe there are a higher percentage of people suffering from prinzmetal.

    Keep us posted on the operation. I am seeing my consultant next week and will be talking about triggers for

    it. Do you have any inFormation on this? I understand stress and the cold are ones, but there are others,

    inflammation cells , over active thyroid, constipation which I would like him to investigate further. I am trying to see what I can find out !

    Thank you for your help. And by the way I think a tens machine is good! I use one.

  • Posted

    Hi Neale! Well, I made it home for one day and I am back in the ICU. Now they think I also had a heart attack a month ago too. I had the pain and the cardiac enzymes showed that I did, but they can also show that if some other things are going on. At the time they though it was one of those other things, but now, they are saying that it is a good possibility I did in fact have a heart attack at that time too. So that now makes three of them for me and I'm just 37.

    You are correct that there is a higher incidence in China. I believe Japan has the highest rate. There is a gene that can either be missing or mutated (can't remember off the top of my head), and it is most common in Asians. If this is the case, taking the supplement L-arginine 4.5 grams twice daily significantly decreases the spasms. The body breaks L-arginine down into nitric oxide.

    As far as triggers, these are the ones I am aware of:

    Stress and cold (as you mentioned)

    Any stimulant: Redbull and energy drinks like it, NoDoz or other pills to keep you awake

    Medications/drugs: many decongestants, but specifically pseudoephedrine and echinacea (ask your pharmacist to recommend one if you need it, as the brands very from store to store), SSRIs (this is a class of anti-depressants that are commonly prescribed), nicotine in any form (smoking, gum, patch), cocaine (generally not a good thing to do anyay)

    Foods: ginger, food and drinks containimg caffeine (coffee, tea and chocolate are the most common)

    I have noticed in myself that if I get dehydrated (from being ill or one a hot summer day that I am outside for and drink enough fluids. I have not read any anything stating there is a relationship, but it is something I have noticed in myself.

    As far as the health conditions you mentioned, here's what I know:

    "Inflammation cells": There does seem to be a correlation between auto-immune disorders (such as rheumatoid arthritis is one of them) and Prinzmetal, but that's all I really know. I don't know if the problem comes in when you just have an auto-immune disorder, or if it either is made worse when the other isn't controlled.

    "Histamine": I vaguely remember reading something about Prinzmetal being made worse by high levels of histamine. Whether what sets off the Prinzmetal is 1) the fact that the body has come into contact with something it doesn't like, 2)the histamine itself being at elevated levels, or 3) if there is another chemical associated with the histamine release that sets off the Prinzmetal, that I don't know. I would be curious if there would be any improvement if an anti-histamine was given, does that make a difference.

    Besides taking a nitrate (medictions in the nitroglycerin family) and a calcium channel blocker, taking a statin (medication for cholesterol) is also important for three reasons. First, as plaque/cholesterol builds up inside the coronary arteries, the inner lumen gets smaller, so over time it takes less and less for the vessel to close completely during a spasm. Second, statins help prevent further plaque/cholesterol by making the endothelial (inner most) layer "slippery" so things have a harder time sticking to it. The third is that they believe statins also decrease the spasms. They haven't been able to definitely prove this, but there is some pretty good evidence leaning that way.

    Also, I found out more info on the most recent surgery I mentioned. It is called an auto-transplant. I'm finding some info from the late1970's and early 1980's that they were doing it then, but stopped for a couple reasons. The first was that they had a high mortality rate at that time. Second, in some cases, the patients still had the spams afterwards. Something interesting I learned today is that some people with severe Prinzmetal that had a heart transplant, got spasms with the new heart, even though the donor never had Prinzmetal. This suggests that there is something outside of the heart and the nerves causing this (when a heart transplant is done, all nerves are cut and are not re-attached). This showes how little is known about what the many causes of coronary vasospasm could be, and there seem to be many, as some therapies work very well for some people, but do absolutely nothing for others.

    That's all I have for you guys today. Hope this was informative Neale.

    Cathy

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