Severity of Prinzmetal Angina

nia
  • By nia · September 6, 2012 at 7:22 am · 21 replies
  • In How heart disease has changed my life
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I have searched online and I have not found one site that I can go to that I can find the answers to my questions.

I am looking for information or study information on the progression of this disorder. I would really like to know where I go from here. I know I can ask my doctor but with the internet I was sure I would find something. Plus, I am looking for a wider study. What I did find were small studies that talked about prinzmetal angina after heart surgery.

I have been dealing with this since I was 33 and I would like to know if anyone has dealt with this for 5 or more years.

Has it gotten worst? if so, how?

were new meds needed?

any hardware implanted? (i have enough and don't want another surgery)

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21 replies   

gracie62

Hi, Nia:

Did your research lead you to American Prinzmetal's Angina Association (http://prinzmetal.us/). I know there are tons of articles on there on research both past and ongoing. It takes time to weed through it all, but you might find something there. I was diagnosed with PA in 2006 after a blockage was found during a heart cath. An emergent case came in so I was scheduled to come back in a few days for a stent since I was stable. When they got me back in the cath lab that blockage had mysteriously disappeared so it was attributed to a coronary artery spasm. Since that time my spasms have been caught in action during multiple heart caths.

As far as I know, calcium channel blockers are still the gold standard in treatment. I take Diltiazem - it is the 3rd CCB I had to try before getting good control over my spasms. My dosage has been adjusted several times over the past few years when my spasms overrode the medication. I use long-acting nitro during periods where I get break-through spasms but if I can control my triggers (cig smoke, stress and extreme temps either way - also dramatic barometric changes due to weather patterns of all things) I don't have to use the nitro very often. I also use nitro quick now and then when I get a sudden severe spasm. My cardiologist was talking about putting me on Renexa for a bit and I know a lot of ladies here are on it or have been on it. Fortunately, I was able to reduce my stress and get my spasms to back off so I was able to avoid another medication.

I am not sure about the progression of the condition. I was told it was a lifelong issue and that my arteries will always have a tendancy to go into spasm. My younger daughter is about to be 20 and has multiple auto-immune issues including Raynaud's. Several ladies in this community have Raynaud's and think it may be related to Prinzmetal's since they have both. She has recently started getting intermittent chest pains so as soon as she gets health insurance in the next few months (married young) I am getting her in with my cardio. A lady on here I believe in the UK posted a while back that a doctor told her PA burns itself out over time. No one else had ever heard of this and I have never found anything on the internet to support it.

I went on to have a heart attack caused, in part, by a spasm when I was 41. Mine was a one in a million - I had had triple bypass surgery (I also have CAD) and 18 days later I formed a blood clot that passed through one of my new bypasses at the exact same moment in the exact same location as I had a spasm- one without the other or either occurring a microsecond earlier or later off by a millimeter from each other and I would have been fine.

If you find any information, please share.

Dianna

Yatchzee

I second all that Dianna said. I don't think it ever goes away and have heard of no one who was cured of it. I was diagnosed in 2004, so 8 years ago, and am still plugging along with spells of spasms. I can go for months without having to use my quick nitro so I feel I am under control with my CCB. My meds have only been changed once early on. I will say, I do live with very little stress and try and make my life that way. It seemed to be my main trigger for spasms.
Joyce

nia
  • By nia
  • Reply 3352399 · In reply to 3352046 by gracie62
  • September 6, 2012 at 11:46 am
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Yes, I went to that site which I learned a lot from. I guess what I am looking for is something or someone with information on life after diagnosis. I was 33 when I was diagnosed but I have a long time to live and I am wondering how long my heart can take this medication. I too have had to have my medication dosage increased. Will this continue? My doc said I cannot take beta blockers because my heart rate is low already. taking nitro and that for me would not be good. I didn't ask why. or if we have to try that medication what then.

If there are people on here with this disorder and have NOT went on to have a heart attach or pacemaker all of my questions would have been answered LOL eh

I know all of us are different, my spasms are just about daily with noticeable signs. I must admit guys and I know this is bad but I am afraid to tell my doc about episodes where I pass out. I can feel the what the freaks coming from you guys. I am sure he will say we have to do some invasive procedure.

cinsou

Hi Nia,
I am a 56 yr old woman diagnosed with this 11+ years ago. I had excellent control with Amlodipine 5 mg. Used Nitro spray once or twice a year only. My husband and I were going to Mexico in the winter time. I would have a few problems for the first week after arrival there and would need Nitro once or twice in those first few days. Otherwise I had no problems with the condition. Just enough to remind me that it was still there in the background.
All of that changed in May of this year. I began having spasms again...sometimes 18-20 per day. Amlodipine eventually increased to 20 mg (4x reccomended dose) and although this slowed them down a bit, they were still severe. During some of the spasms, I develop a "heart block" which at best makes my pulse irreguar, but if it becomes severe, my heart rate slows down to barely beating. Enough that if I'm not laying flat, I will pass out. The spasm usually responds to Nitro spray within 2-4 minutes and the spasm is resolved....until the next one. I recently started on Adalat xl 40 mg in addition to the Amlodipine and have gained further control. I will now go for 5 or 6 days with no spasms and then they return for a couple or three days and then mysteriously dissappear again. On the days I am having spasms, I wear a nitro patch 0.6 mg. and use nitro spray. I also am taking Magnesium daily. Also since the addition of the Adalat, the spasms although still very painful and scary, have not progressed to the point of developing the heart block.
I also have a history of Raynauds and occular migranes. The Raynauds has not bothered me for many years, and the occular migranes are rare...sometimes 2 years betweed episodes.
Cindy

gracie62
  • By gracie62
  • Reply 3352961 · In reply to 3352399 by nia
  • September 6, 2012 at 3:05 pm
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I despise beta blockers! A lot of ladies on here with Prinzmetal's and without have no issues with them. In my case I was placed on one by one doctor and then another took me off of it saying BB's have a tendancy to cause and/or worsen coronary artery spasms in those prone to them. And I felt better off the BB - he increased my ACE Inhibitor for my blood pressure issues. Then the doctor who did my bypass placed me back on one when I was discharged. I asked the nurse to call the doctor to be sure I should be taking a BB with my spasms and he assured her I would be fine - and then I went on to have that nasty little heart attack a few weeks later caused, in part, by a freaking spasm! Geeze! My cardio then told me to never, ever take a BB again due to my Prinzmetal's. That's just my experience - not advising anyone NOT to take BB's. I just feel like anyone with Prinzmetal's should use extreme caution and be very vigiliant of any problems or symptoms they develope while taking a BB. I also had so much fatigue while on a BB that I could barely function.

You need to let your doctors know about the fainting/passing out. That is dangerous in so many ways, for so many reasons - sorry, I'm a mother of 2 grown daughters- I had to say it. You may just need an adjustment to your existing meds if your heart rate is getting even lower than the low that is normal for you (did that make sense?)

Dealing with this daily is frustrating. I had a cluster of spasms a few weeks ago that came and went so frequently over a few days it felt almost like one never-ending spasm. For a week after they ended I felt like I had been kicked in the chest by a mule. I think it was a combination of weather changes and the heat where I live.

Hope you get relief soon.

Dianna

Jifizap

I do not know why you are averse to a pacemaker. I had a heart attack 20 years ago caused by Prinzmetals. I've had an ICD/pacemaker for 14.5 years. I used to only have spasms when I was a smoker, but in the last 6 months I have begun having infrequent spasms and using nitro again.

nia

What does the pacemaker do? what happens when you have a spasm or...

Yatchzee

You need to tell you doctor you are passing out. Have you worn a heart monitor for a few days? That might show what is happening with you. That is not invasive. Joyce

vampyrra1

I've had Prinzmetal's for 31 years... diagnosed at 22, now 53. Over the years I've literally been on almost every drug or combo you could imagine! I find the most effective FOR ME is amlodipine 10mg/ atenolol 50mg daily (with the occasional nitro for breakthrough pain). Some patients do stop having spasms inexplicably, but that's not the norm. When I was 31, I had a spontaneous remission (after the birth of my second child) that lasted five years... IT WAS AWESOME! Sadly, it didn't last. I'm not certain why so much concern re: pacemaker? If your spasms are in the RCA, then yes, you are at risk for certain types of heart block (some of the electrical impulses are blocked due to ischemia of the sinus node) and at some point a pacemaker MIGHT be appropriate. Likewise, if your spasms are in the LAD, you might be at risk for ventricular arrhythmias (VT, VFIB) in which case an ICD would be more appropriate. At any rate, a pacemaker is not that big a deal... just had my two year PM anniversary... feel so much better with it than I did without it! Hope you find the answers you're seeking.

Terri

vampyrra1
  • By vampyrra1
  • Reply 3354062 · In reply to 3352046 by gracie62
  • September 6, 2012 at 9:50 pm
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Hi Dianna!
You might try www.googlescholar.com... just enter the terms prinzmetal's and remission and you'll find numerous articles documenting both short and long term remission in prinzmetal's patients.

Terri

gracie62
  • By gracie62
  • Reply 3354156 · In reply to 3354062 by vampyrra1
  • September 6, 2012 at 10:25 pm
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Hi Terri -
I have read of some people having periods of remission - just never having the condition completely burn itaelf out and disappear permanently - just to clarify. We all learn from each other and shared experiences. I hope all of us can experience remission at some point or another!

Dianna

Yatchzee

I never have used the googlescolar site before and like it. Thanks, Joyce

Masarelle

My Son aged 36, is due a second angiogram, after having had a stent put in early last year. After 'browsing' angina again, becuase of his problems, I was brought up short with coming across - for the first time ever - prinzmetal angina!

Diabolical chest pain, Yes; lasting 5 to 30 (or even 40) mins, Yes; generally between midnight and the early hours, Yes; In the chest behind breastbone, Yes; starts at a younger age, around 50, Yes; can radiate to other parts of the body, including the back, Yes; may occur in clusters, Yes; invariably in people not seen as having a heart disease risk factor, Yes..................hang on a minute....that's me, for the past 15 years!

I get cluster 'muggy' headaches, but not true migraine and I generally have cold feet, but not with the blueness of Raynauds, I have always had a very slightly lowered blood pressure, but within acceptable limits. The chest pains only occured once every 18/24 months to start with, now I get them several times a year, which is probably no-where near what many of you are experiencing!

Why has no doctor brought up this possibility before now, instead of fobbing me off with 'indigestion', 'gullet sphincter spasm' and other such things - even to the extent of giving me an endoscopy!

OK, armed with this information and just having had a chest xray, I will be seeing my Dr. later this month, and possibly writing to him in the meantime to give him a 'heads up' on what he needs to gen up on - as they obviously don't know it all!

What I would really like to know from anyone out there is - does anyone have breathing issues as well? I know PMA does not come on with exercise, and this is not where I am heading with this point - I get too 'puffed out' with aerobic exercise these days, to even attempt anything more than Yoga!

My son with his 'blocked artery' type of angina, gets breathless when having to do anything. Since I was in my teens I have always suffered from breathlessness - not Asthma, but just breathing difficulties on excertion. I found it really difficult to climb hills in the lake district, was always last in sports day races, etc etc. Now I struggle with doing a days housework, gardening, shopping etc (not all in one day!) climbing stairs, and have to 'rest up' more often.

I can walk for a reasonably long distance - on the level - but as soon as the path inclines upwards, I really struggle - as I do with going up stairs. In most instances I recover fairly quickly, but a long walk, up a steadily rising hill, had me almost fainting at the top. Going to the Great Wall of China - not a good idea I know, but I always knew I would not achieve much - but just going up a few levels (slowly) on the' easy' side, by the time I got up - and them back down again - my whole body, including my head was pulsating! (the people who went up the 'difficult' side, were just all striding up, no stopping, no catching breath, how do they do it???)

I have been seeing the Dr. for various chest/breathing issues, and that was why I had the chest xray and various blood test, I also had a 'lung function test' - blowing into the machine which measures your lung capability - and guess what - I have the lungs of a 47 year old at age 65! This leads me to suspect the issue is not a breathing issue from the lungs, that the exercise and uphill climb bit are coming from elsewhere - so back to my original question - does breathlessness form a part of anyone else's PMA, as it seems to do with other types of Angina?

Thanks for your time.

Masarelle

Trissie

Nia,
I have been experiencing Prinzmetal's spasms since I was 31, I'll be 80 next month, and have never had a heart attack.
It's been a frustrating 40 plus years, expecially the first 20, but in 1985 I met my present cardiologist, who diagnosed the spasms with a heart catheterization using the awful drug that stimulates the spasms, if you have Prinzmetal's. It's the only time I've seen that doctor sweat when he had a hard time stopping them.
The next 10 years my spasms came in episodes lasting a week or 10 days. Then in 1995 the chest pain seemed more associated with physical activity. The doctor ordered another cath thinking it was only spasms again, but found 90plus blockage in my right coronary artery. So in addition to Prinzmetal's I had coronary artery disease. The episodes came with worse pain after that and since the first discovery I've had 7 stents placed.
Why no heart attack is a puzzle. I've wondered if it is because I'm such a chicken when I have pain, I won't ignore it.
Currently I have a list on the wall that declares what to do before ER, 1. take a claritin, 2. take oxygen (I bought my own concentrator cause though the oxygen gives relief, my O2 level never get low enough for Medicare) 3. take Tramadol (a pain killer) 4. take Xanex 5. go to ER. My husband has to remind me to check the list when I am having a spell of chest pain.
Hope this helps.
Trissie

Masarelle
  • By Masarelle
  • Reply 3406809 · In reply to 3355435 by Masarelle
  • September 26, 2012 at 4:27 am
  • Report post

My earlier message posted just over two weeks ago, on 2 or 3 of the discussion pages here, has really elicited no response (or no-one has bothered to read it) in direct answer to my question on breathlesness, although a couple of people have kindly replied. I take it from that, that there is no issue regarding breathlesness and Prinzmetal Angina?

Being due to see my Dr. tomorrow where I intend discussing this with him for the first time, I would have liked to have known if there could be a link between the breathlesness which i have had since my teens and PA.

Through reading these pages I can see my attacks - spaced anything from a month to two years apart - would be considered very minor to those who seem to suffer the problem daily. However, the threat to my life; the terror of anticipating the next pain and the horror of it when it does 'turn on' are, I am guessing, of no less of a concern, even though I may not get them every day.


With every chest xray and lung test giving me a clean bill of health on my lungs I can only assume the heart is the next logical step to being the cause of breathlessness. If anyone has had years of breathing issues - before the PA started I would love to hear about it.

Mas

gjl

Mas, sorry only just saw this post. I had significant breathlessness for 18 months before being diagnosed with Prinzmetal. That aspect of the illness responded well to medicines.
gjl

cinsou

Hi Masarelle, sorry for not responding directly to your question earlier. The breathlessness you experience has not been a problem for me. But reading through your post again reminded me of my father. He experienced breathlessness such as you describe, but I don't think he ever got to a point of feeling like he might pass out. I remember him huffing and puffing on exertion and it was especially noticeable when he was going uphill. He would have been fairly young when that started....and when I asked him about it, he replied that he has been like that for so long he can't remember when it started. He was an active healthy man, and did not have asthma. Occular migranes has also been an issue for him for many years, since he was a young man. So, vasospasm is certainly happening in his body. He never developed Prinzmetals or any angina.
Cindy

nia

Yes, I get the breathlessness. It feels like a switch is being turned on and off. then i feel a hard thump in my chest which makes me cough. its not a regular cough its more like a cough of air. I can't tell it's coming it just happens in mid word. I find myself apologizing when this happens and I am talking to people. Anyway, the thump and the cough happens at the same time and I feel the spasm.

I have spasm daily though not as many as I use to have. The breathlessness is getting more noticeable. One time I had a bad episode but this time i was so breathless i felt like i was floating. it sounds stupid but...

Masarelle

Thanks for your responses, all. Will see how we get on tomorrow....lol All I now know is, that next time I get the pain I will be off to emergency to get that immediate blood test!

TamraB

Hi Nia,
I have only been diagnosed with PA this year, so it is new to me as well.
But I do not like the idea that you are NOT telling your doctor about passing out (syncope) ... this can be caused from meds or something very serious. PLEASE tell your cardiologist!
I was blacking out 12 years ago and it ended up being ventricular tachycardia and I nearly died ... and all I needed to save me in the end was a procedure called an ablation, which they do while you are awake in a cath lab. It was NOT pleasant ... but hey ... I am still here!
Let us know how you get one please.

Hi Masarelle
I am 48 and have PA but also exercice induced angina & breathlessness ... so we can have both. I teach tai chi 5 days a week in the am and then do what I can manage the rest of the day. Some days I can do heaps but many of the days this is not possible. So I take each day as it comes and do what I can, but make sure I enjoy each day. Becuase I have not guarantees that I will wake up tomorrow.
I get breathless with any type of exertion ... I can walk on level ground for quite a distance ... but if my cardio is peaked ... yikes I'm grabbing for my nitolingual and sitting down.
Let us know how your doc visit went

Smiles
Tamara

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