prinzmetals angina

Heart health and blood vessels
1

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.

2

I think I suffer from this but can't seem to find anyone who will say I have it or do anything about it. how did you find out you have it?. My pain is only at night as I am falling asleep and I can have up to 7 of these attacks a night, seems to be getting worse this last few weeks, much more servere and painful. Sometimes I think it might be better to just get it over with one night.

Any help you can give would be helpful

Many thanks

Pete

3

I dont know whether this post will be of any help to anyone suffering from prinzemetal angina, but my husband was diagnosed with this about 3 years ago after a year of agonising pain night after night. He only ever had an episode during the daytime once, but used to experience pain at 9.00pm and then throught the night when he was resting. The problem baffled doctors and we were at our wits end when finally a doctor at Barnet Hospital finally started to treat him. He takes Isosorbide Dinatrate 50mg per day, + Verapamil. He carries a nitrate spray but very rarely needs it. The daily medication works really well for him

4

I understand your pain and frustration. I was diagnosed with Prinzmetal angina around 2000. Nine years ago and I have suffered repeated episodes for these nine years. The cardiologists that diagnosed me during a heart catherization said that I had an episode on the table. My pain occurs at first mostly during the night when it first started nine years ago, when I got cold, but now it occurs even during the day, afternoon, evening or night. Sometimes I get it when I feel stressed and other times when I am resting, or even enjoying my time and without warning. I used to use nitoglycerin, but now I chew two asperin to try to alleve the pain more quickly and to prevent a heart attack. Nitroglycerin tabs under the tongue did not relieve the pain. Neither does the asperin, I am just trying to prevent a heart attack. Sometimes I try to lay done, sometimes I am laying down and awaken with it and I have to get up, try reclining, laying back down and nothing helps. The cardiologists that diagnosed me had a massive heartattack and died the day that I was to go back for follow up. He had told me and my family what I had and that he could treat it with calcium channel blockers. Since he died unexpectedly I had to see another Dr. in his group who told me that he didn't believe the other cardiologists and that he was dead now and he didn't care what he said, throwing my paper work in the trash and telling me I was wasting his valuable time. I was traumatized and never went back nor recieved treatment. I keep telling Dr.'s now that I was diagnosed with it but they look at me as if I am making everything up. I am trying to get treatment; the pain is getting unbearable and lasting for about 40 minutes and I had 4 episodes in Feb. I just had a stress test. I asked this doctor why the other doctors look at me so weird or like I'm making this up and he says it's because it is so rare and that they know so little about it. It is difficult to diagnose. I cannot understand especially since I have already been diagnosed. I am trying not to give up but sometimes I think if it could just be over in one night. When I describe the pain I am having they look at me like I am a hypocondriac. It is real and it is terrible pain and I think for sure that I am having a heart attack and I think that I probably will one day if I haven't already. They always tell me that the EKG shows that I have already had one or else it's the machine. I have had many EKG's on different machines. I can get to the hospital during the episode but they are so slow that I get over it before they get me on an EKG. I found out in 2006 that I also have all my valves leaking and can't get anything done about that. I feel traumatized and stressed out like I have a bomb ticking inside me. I am hoping to get some help soon. Thanks for sharing your episodes with me. I don't feel so alone now. I hope I have helped some of you. May God Bless and keep you. He is my Strength and my Helper.

5

i have prinzmetal angina for 2 yrs .i am 46 yrs old female ,i am in and out of hospital a lot and takind a lot of tabs for it .my pain can be day or nite .i also started to be tachycardia with it and was in icu for 4 days ,some of the tablets can make the heart beat fast .i felt low today and i found this site it great to read other are feeling like me :lol:

6

I was diagnosed with angina 5 years ago after having severe chest pain and being admitted to hospital. I was on medication for 6 months then had an angiogram in which my arteries were normal, I was therefore taken off all medication and told there was nothing wrong with me. After suffering for about a year I had an eposide when I thought I was having a full blown heart attack and was admitted into hospital again. After many tests they diagnosed me with Prinzmetal Angina and I was put back on medication. I can have attacks at any time of day, whether I am rested or under stress or being physically active. My chest feels so tight and constricted and I become very breathless, I have to lie down to rest to try to relieve it as the nitroglycirin does not always work. For many months I have felt so alone as nobody understands what I am feeling so it has been reassuring to know that there are other people just like me. I am 47 years old.

7

Hi, I have recently been diagnosed with variant angina (Prinzmetals) after many years of suffering angina attacks usually at rest, but occasionally during the day while active but not under physical stress. I have had all the tests over the years except the catheterization as I am allergic to iodine and cannot have this. There appears to be a slight valve problem in association with my angina but no atheriosclerosis. I am 56 and have had angina since before my 40th birthday. After years of being on beta blockers (not ideal for this) I am now on calcium channel blockers and verapamil plus my GTN spray which sometimes works, sometimes not. I have been admitted four times this year for angina. Prior to those admissions I had been diagnosed as having vasovagal attack, then that was discounted and an "electrical fault' was diagnosed in the heart. Then the cardiologist decided I had (in his words) mild angina, a small murmur and a slight defect but nothing to worry about" First two occasions this year I was told I had unstable angina.. now that has been changed to variant angina. Talk about confused! Finally though, this diagnosis seems to fit my symptoms a lot better than any of the previous attempts to clarify the situation. So, on reading up on this new diagnosis, I find that it can be triggered by cold and stress, and that is is rare, about 4/100000 of the population have it. Also, that it is associated with illnesses that cause immune system problems, such as lupus. I have fibromyalgia, similar to lupus, so it is possible that I have developed the Prinzmetals after the fibromyalgia or that they have developed independently and coincidentally. I too thought I was going mad, the doctors didn't seem to know what to do with me and there is no literature at the hospital about this. Thank goodness for google smile

Keep warm, keep taking the tablets, and if your spray doesn't help during an attack.. call the ambulance STAT!

Best Wishes

8

I am soooooo glad to find this forum!!!, I do not have the time for put it all down right now, but, will be back later tonight to post.

I have just been diagnosed in the last week.

9

Ok so this is real late but im so glad. My mum has only

Just been diagnosed with this after years of suffering. The nurse said how it was so rare and the hardest condition to diagnose as they would have to see it happening but it only happens when someone is having an episode. My mum actually had a cardiac arrest from obviously sever chest pain that was not relieved however she was amazingly brought back with us and now takes slow release medication and was tol how important keeping the spray with her at all times is. The medication helps the night pains but she has been getting pains in day time. I think its because its cold and shes been stressed.

10

I had three attacks before having Varient Angina (Prinzmetals) diagnosed. All three attacks occurred at rest and during the day. Two at my desk at work (with three years symptom free between them) and the worst at 8am whilst sitting having my morning cuppa. I was taken to hospital on two of these occasions but as my heart seemed fine I was sent home the same day. However, I then had quite a few less severe episodes so my GP thought I had Varient Angina and tried me on Calcium Antagonist and since then I have never had a recurrence. I also immediately stopped my daily Calcium tablet which I took to keeep my bones strong and Glucosamine for my joints. When I read that Angina could be caused by calcium build up in the arteries I thought it pragmatic to stop the calcium tablet !! And susequently I read an article in a Newpaper suggesting that Calcium should not be available freely from suppliers of supplements as too much was not healthy at all as the body cannot get rid of excessive amounts. I think I was probably getting enough ayway from the copious amounts of milk I have in my equally copious cups of tea each day.

Hope this helps

Tigger123

11

The pieces of the puzzle slowly come together.

I have had these symptoms; crushing chest pains, day and night, infrequently, for forty years. Blue light journeys to A & E twice in that time, with, 'no problem', ECG results, from doctors who have looked at me as if I was a hysterical time waster.

I was a vegetarian for most of that time, with a high dairy intake. 'Ah', you say, 'so the high calcium was triggering it'. But then three years ago i began to get more and more total body pain, which began in my feet and now exists 24/7, in every bone and muscle in my entire body. From Ibuprofen to Solpadol to Tramadol and Gabapentin and Amitriptylene, to the jackpot, morphine patches.

And along the way, a diagnosis of OsteoMalacia, aka Rickets, because of too little calcium caused by an acute lack of Vitamin D!

I had never heard of Prinzmetal angina before I found it this week on the internet. And I was looking on the internet because last week I had a Coronary Angiogram because finally my GP decided the chest pain required further investigation.

And guess what? The angiogram was, 'normal'. Why for Gods sake, when I was having the angiogram and knowing my symptoms, didn't the cardiologist test for this!!!

I am at my wits end, in constant crippling pain. Would anybody like to have a stab at a whole body diagnosis because having been passed from Rheumatologists to Neurologists to Cardiologists, all of whom deny any responsibility, I am now being, 'parked', in the pain clinic?

Cash prize for best answer! (That's a joke BTW).

12

WOW!!!! It is great to know I am not alone. I read most of these and have had most of what you all wrote happen to me. I am about to turn 51 and and spent all last week in the hospital. What started out as a lil tight chest pain while food shopping turned really ugly. Once my husband raced me to hospital of corse they did the usual EKG and so forth. No one knew really what to do so they put me in a room. After 2 days of nitro pills and morphine they finally decided to run a heart catheter. We are still in the dark. I had 4 attacks while there. They told me it was Prinzmetal angina. We are still like" WHAT THE HECK IS THAT?" They finally sent me home and the next day as I was peacefully watching a cartoon, BLAM, another very intense attack. Back to E.R. with some very annoying no bedside manner nurses and sent home. Something has to be done for our doctors to help us. This is a extremely painful thing to happen. Mine last from 1 hour till last one was 2 1/2 hours. NOT FUN!!! Gonna talk to the big town doctors next. I hope more come forward about this.

13

I was diagnosed with Prinzmetal's Angina a couple of years ago, and now have been diagnosed with cancer which required some surgical procedures. My consultant anaesthetist told me that my variant form of angina is called "syndrome X" by the surgeons because they don't know what causes it. The only treatment for an attack is bed rest and pain relief. However, they can put you on permanent heart medication to protect the heart from damage when the attacks happen. I am on such medication and it does mean I have fewer attacks. I got a bit fed up with waking up in the middle of an attack and having to rush off to hospital at all hours!! My advice…. get whatever regular meds you need, stop looking for answers they don't have, and when you DO have an attack, call the ambulance straight away and get to A & E and tell them what you have been diagnosed with. The rest of the time, stop worrying and get on with your life. They can't stop the attacks, they can help when they happen, but looking for answers is fruitless and stressful. There is life after Prinzmetals' diagnosis. Enjoy! and best wishes to all of you smile

14

Wow so nice to find this discussion, I was diagnosed last August with a trip to the hospital and all the tests, I was told mine was caused by stress and caffeine (I was taking 2vivrin in the morning instead of drinking coffee or soda) so I made a complete lifestyle change, I follow Dr. Joel Furman nutritarian lifestyle gave up all forms of caffine a absolutly no processed food keeping the stress down and I feel fantastic I do take 1channel blocker per day but there is no more pain or shortness of breath or anything. I hope this helps someone

15

Hi Vicki,

I have recently had cancer treatment which has caused difficult symptoms which I am waiting on a diagnosis for, but it's likely I will find I have PRD (Pelvic Radiotherapy Disease). To ease the symptoms I am trying a

low fibre, low residue diet for a while which means no caffeine. It is possible the no caffeine may help with

the angina too. I will let you know smile

16

Hi, I am new to this having just had my third admission to the local cardiac unit and had the angiogram done as well. The result is prinzmetal's angina. Chronic pain in my chest, arm, neck you name it. All the usual meds, verapamil, isomono, nitrates, statins etc... But at 45 feels like my life has be turned upside down. Three months ago I was walking the three peaks, a fit healthy man... And in three weeks I have turned into Albert steptoe! Great to know you guys are out there too... I felt like no one understood, each time in hospital the ECG was ok, the troponin was good so no heart attack, felt like I was making this all up... Even the angio came back ok until the cardiologist explained what was going on... Does anyone have any tips for coping with this... What works well, what have you tried? What to avoid? Thanks for any advice folks.

Daren

17

I was diagnosed with Prinzmetal's Angina last year, after my doctor thought I had angina. The hospital specialist put me on cholesterol tablets and an Angina tablet and said he would see what happened over the next 5 weeks and then possibly do an angiogram. After taking one tablet I had really dreadful headache that lasted 36 hours so stopped taking, tried a different tablet with same effect. My doctor wrote to the hospital and they carried out the angiogram and found no angina, but Prinzmetal's. I am already taking a betablocker and asperin for paroximal atrial fibrillation so was not keen of taking any further tablets. I only get pain if I run for the bus and takes me 5 mins to stop gasping. So I don't run for buses now. Fortunately I don't seem to have much problems other than that. I have tablets I can put under the tongue for as and when necessary, but not used them yet. Except I am having trouble getting travel insurance. Good to hear what problems other people have experienced.

18

Hey! I'm a former critical nurse who is now disabled at the age of 37 due to Prinzmetal's. I was diagnosed 5 years ago. Had a heart attack two years ago. Had a cardiac arrest (my heart stopped and I gpt CPR?shocked and by the grace of God made it back) a year ago. In 2013 I had 13 admissions to the CCU, which is why I am now disabled.

I just wanted to let people who have SEVERE cases, like mine, know that there is a surgery that is rarely done today, but it may significantly improve your case. It's called a sympathectomy. When the sympathetic nerve is stimulated (along with the rest of the sympathetic nervous system it is responsible for the "Fight or Flight" response), it causes the coronary arteries to constrict. In some people, their Prinzmetal's can be caused by over stimulation of the sympathetic nerve. What happens with the surgery is a cardiothoracic surgeon goes in through your chest (ribs) and removes the part of the sympathetic nerve that would connect to the coronary arteries, so it cannot send anymore impulses there. 60% it is cause my the left sympathetic nerve, and 40% by the right. Sometimes they gamble and do just the left, in my case they did both sides. In some people this cures the Prinzmetal's all together. In mine it improved it, but I still have a lot of issues with it. There is no way to test ahead of time if this is the issue. You can google it and see it done on video. It used as a treatment for other things as well. Like I said, it is not done often, and is really a lst ditch effort, but when your case is really bad, sometimes they will do it. Finding a surgeon that is proficient at doing them is not easy as they are not done frequently, so if this is something your cardiologist feels may help you, go with who they recommend, as they would likely know who has done them.

Cheers!

Cathy

19

The previous post was mine as well. I didn't proof read it. It was supposed to read the I got CPR/shocked, not the CPR?shocked. Can I blame my poor typing on the Prinzmetal's, lol?

Cathy

20

hi Cathy, thanks for you post, it was very informative. I have been to Emergency dept at our hospital twice in under a week after having almost a year free of Prinzmetals…. no idea why all of a sudden i'm getting two close together. two years ago I had two episodes two weeks apart but they are not usually so close together. I am waiting on the cardiologist as I have a lot of other health issues as well, but I will see whether he thinks this could be helpful in my case. All the best.

Josie