I too have this condition. I've had it for 4 years now, since my heart attack on Dec. 18,2012, and my cardiologist says it probably will not go away, unlike most cases where it lasts only a few weeks. I had an episode that caused a myocardial infarction which dissected my right coronary artery. My right coronary artery and my circumplex were 100% closed. I was down for about 10 minutes and had 3 defibrillator jolts at 200 joules, then 1 at 300 joules which brought me back from the near death experience. I also take Isosorbide mononitrate, but also take nitrogylcerin under my tongue 2-4 times a week, on average.
The down time affected my memory, mostly short term memory. I have little stamina now and get tired very easily.
It is quite a change and very difficult to get used to, not being able to do all the very physical activity I used to really enjoy.
It is nice to hear from someone else who has long term effects from this. From what my cardiologist told me and what I've read, this long term condition is extremely rare.
Take care of yourself.
Huge
Yes it's tough having to live a whole different way. My disability was approved I think it was the fact all the Doctors reported I would not make it through a 3rd heart attack. Now i believe I will be going to a different stage with a lot less I can do. I see many Doctors in the next month and will know then
I was diagnosed with prinzmetal over 16 years ago. Unfortunately over the last several years it is getting worse. I have had two known heart attacks due to the severe spasms. I am afraid to go to the local emergency room due to fear of the medical profession. The last time I had a severe spasm my cardiologist was out of town. I had a cardiologist from the emergency room rush me to a cath lab and wound up dissecting almost all of my right coronary artery which in turn led to bypass. Does any one from this group know of a cardiologist that specializes in Prinzmetal? I love m cardiologist but he is looking for answers to help me as well as it is rare.
Hello, @the3shus. Welcome to Mayo Connect, we are so glad you have joined us. I'm so sorry to hear of your heart problems and difficulty finding answers. I see that you are looking for a cardiologist who might be able to help you You do not mention where you live, however, you might consider visiting a large medical center, especially one with a medical school. Also, Mayo Clinic has 3 locations in Minnesota, Florida and Arizona. It would probably be helpful to make a trip in order to find the answers. The American Heart Association also has a website, perhaps you could find a specialist in your area who addresses this type of heart problem. I am also tagging, @kanaazpereira, the moderator of this group, who might be able to offer some suggestions. Please keep in touch with us and let us know how you are doing. Teresa
I'd like to add my welcome to Teresa's; this type of angina is indeed rare, and unlike typical angina, which usually occurs with physical activity, coronary artery spasms often occur at rest.
If you would like to consult with a cardiologist from Mayo Clinic, you can call any one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.
I was diagnosed with prinzmetal over 16 years ago. Unfortunately over the last several years it is getting worse. I have had two known heart attacks due to the severe spasms. I am afraid to go to the local emergency room due to fear of the medical profession. The last time I had a severe spasm my cardiologist was out of town. I had a cardiologist from the emergency room rush me to a cath lab and wound up dissecting almost all of my right coronary artery which in turn led to bypass. Does any one from this group know of a cardiologist that specializes in Prinzmetal? I love m cardiologist but he is looking for answers to help me as well as it is rare.
Dr Amir Lerman. Mayo Rochester MN
I have the same fear however most of the hospital Doctors know about me, it's the health politics keeping me from getting the treatment that works
I too have this condition. I've had it for 4 years now, since my heart attack on Dec. 18,2012, and my cardiologist says it probably will not go away, unlike most cases where it lasts only a few weeks. I had an episode that caused a myocardial infarction which dissected my right coronary artery. My right coronary artery and my circumplex were 100% closed. I was down for about 10 minutes and had 3 defibrillator jolts at 200 joules, then 1 at 300 joules which brought me back from the near death experience. I also take Isosorbide mononitrate, but also take nitrogylcerin under my tongue 2-4 times a week, on average.
The down time affected my memory, mostly short term memory. I have little stamina now and get tired very easily.
It is quite a change and very difficult to get used to, not being able to do all the very physical activity I used to really enjoy.
It is nice to hear from someone else who has long term effects from this. From what my cardiologist told me and what I've read, this long term condition is extremely rare.
Take care of yourself.
Huge
It's heart wrenching to read your story it also hits home too close to home I also have stents throughout my arteries in my heart 8 in the right inferior artery a couple of stance in each of the other arteries during these procedures they have noticed prinzmetal angina happening at the same time. Your comment you don't have to like it but you do have to live with it. I am up for heart bypass surgery I am wondering if they bypass all the arteries in your heart with new arteries from elsewhere in your body will the prince metal go away I have read all the post on this site and have not found any reference to bypass surgery correcting the problem I have not talked to my cardiologists about this as of yet. good luck to all the stories are endearing would be nice if they could find a cure for this.
Bob Smith
I have had Coronary Artery Spams multiple Arteries since I was 41. I also have Coronary microvascular disease. since 2010 I have been having many Episodes. It took until 2015 with many months spent at Mayo AZ & MN, then University Colorado and National Jewish. The University determined I have fibromuscular dysplasia (FMD) complicated by renal artery spams. The FMD causes my blood pressures to go up to high levels at times up to 250-260 over 90-120's. The high blood pressue in turn kicks in the Coronary Artery Spasm (CAS) causing Variant Angina. After Angioplasty of renal arteries I was still having issues because of hypoxia. National Jewish determined I have tracheobronchomalacia (TBM) Surgery for Trachobranchoplasty Dec 2015. I had MI Dec 2016 due to ER taking 2 hours to get my IV Nitroglycern going during an attack we could not stop at home by taking 2 Liquid Gel Nephedipine 15 min apart and 3 Nitro spray 5 min apart in between. But I still have intermittent hypoxia and that gain sets off the CAS. This year I then went into intermittent heart block which causes intermittent Bradycardia as well and it also caused increased CAS. We had to lower my Calcium channel blocker. My Statin caused muscle issue so they placed me on CoQ10 unfortunately it had an additive of piperine that helps absorption of Coq10 but it reduces absorption of both Nephedipine & Verapimil so taking Coq10 with piperine again affected the CAS. My Cardiologist has me carry a letter stating what my issues are and that it causes cardiac flow deviation proven via multiple heart caths at mayo with reproduction. The letter also tells them that at times I will present with severe angina with ischemia with no detectable biomarkers or obvious ECG changes. I shoudl be managed with a high index of suspicion for ischemia and be terated appropriately with IV Nitroglycern to resolve the angina. This works at most hospitals. But as I said Dec 2015 ER delayed treatment & MI resulted. Then this spring ER did great put me on the IV nitro but when they tried to titrate it down I went back into Angina. This has happned in past and I have been in ICU on Nitro 85mics for 5 days. But when the ER doc called cardiac to put me in hospital the cardiac physician said 'This is my hospital and I do nto think the Nitro is needed I am yanking the IV and discharging you." Fortunately ER Doc did not do so he called National Jewish talked to on call cardio and my Cardiologist both said to leave me on Nitro as long as I have angina. The mater was worse in that my FMD had kicjed in BYS in 250-250 range and up to 195/100 on 65 mcs nitro. The Bp's came down next day when both Cardaic and Renal arteries stopped spasms. The next am 7am I was at my Cardiologist & went in again. I was admitted and left on IV Nitro until the next Monday when they could to angioplasyy of Renal artery. Needless to say I ahve filed a complaint with the state on the Cardiac physician. I tell you all this to demonstrate just how many things can affected the COroanry Artery Spams. And to point out that you must be your own advocate for proper medical care.
I have had Coronary Artery Spams multiple Arteries since I was 41. I also have Coronary microvascular disease. since 2010 I have been having many Episodes. It took until 2015 with many months spent at Mayo AZ & MN, then University Colorado and National Jewish. The University determined I have fibromuscular dysplasia (FMD) complicated by renal artery spams. The FMD causes my blood pressures to go up to high levels at times up to 250-260 over 90-120's. The high blood pressue in turn kicks in the Coronary Artery Spasm (CAS) causing Variant Angina. After Angioplasty of renal arteries I was still having issues because of hypoxia. National Jewish determined I have tracheobronchomalacia (TBM) Surgery for Trachobranchoplasty Dec 2015. I had MI Dec 2016 due to ER taking 2 hours to get my IV Nitroglycern going during an attack we could not stop at home by taking 2 Liquid Gel Nephedipine 15 min apart and 3 Nitro spray 5 min apart in between. But I still have intermittent hypoxia and that gain sets off the CAS. This year I then went into intermittent heart block which causes intermittent Bradycardia as well and it also caused increased CAS. We had to lower my Calcium channel blocker. My Statin caused muscle issue so they placed me on CoQ10 unfortunately it had an additive of piperine that helps absorption of Coq10 but it reduces absorption of both Nephedipine & Verapimil so taking Coq10 with piperine again affected the CAS. My Cardiologist has me carry a letter stating what my issues are and that it causes cardiac flow deviation proven via multiple heart caths at mayo with reproduction. The letter also tells them that at times I will present with severe angina with ischemia with no detectable biomarkers or obvious ECG changes. I shoudl be managed with a high index of suspicion for ischemia and be terated appropriately with IV Nitroglycern to resolve the angina. This works at most hospitals. But as I said Dec 2015 ER delayed treatment & MI resulted. Then this spring ER did great put me on the IV nitro but when they tried to titrate it down I went back into Angina. This has happned in past and I have been in ICU on Nitro 85mics for 5 days. But when the ER doc called cardiac to put me in hospital the cardiac physician said 'This is my hospital and I do nto think the Nitro is needed I am yanking the IV and discharging you." Fortunately ER Doc did not do so he called National Jewish talked to on call cardio and my Cardiologist both said to leave me on Nitro as long as I have angina. The mater was worse in that my FMD had kicjed in BYS in 250-250 range and up to 195/100 on 65 mcs nitro. The Bp's came down next day when both Cardaic and Renal arteries stopped spasms. The next am 7am I was at my Cardiologist & went in again. I was admitted and left on IV Nitro until the next Monday when they could to angioplasyy of Renal artery. Needless to say I ahve filed a complaint with the state on the Cardiac physician. I tell you all this to demonstrate just how many things can affected the COroanry Artery Spams. And to point out that you must be your own advocate for proper medical care.
Prinzmetal brings a lot of problems when you end up with a Dr that doesn't know about PA and/or will not get a Dr involved that does know at least something about it. Have you gone to a Hematologist that knows about PA? My potassium, magnesium, vitamin D has to be kept at a certain level
I have had Coronary Artery Spams multiple Arteries since I was 41. I also have Coronary microvascular disease. since 2010 I have been having many Episodes. It took until 2015 with many months spent at Mayo AZ & MN, then University Colorado and National Jewish. The University determined I have fibromuscular dysplasia (FMD) complicated by renal artery spams. The FMD causes my blood pressures to go up to high levels at times up to 250-260 over 90-120's. The high blood pressue in turn kicks in the Coronary Artery Spasm (CAS) causing Variant Angina. After Angioplasty of renal arteries I was still having issues because of hypoxia. National Jewish determined I have tracheobronchomalacia (TBM) Surgery for Trachobranchoplasty Dec 2015. I had MI Dec 2016 due to ER taking 2 hours to get my IV Nitroglycern going during an attack we could not stop at home by taking 2 Liquid Gel Nephedipine 15 min apart and 3 Nitro spray 5 min apart in between. But I still have intermittent hypoxia and that gain sets off the CAS. This year I then went into intermittent heart block which causes intermittent Bradycardia as well and it also caused increased CAS. We had to lower my Calcium channel blocker. My Statin caused muscle issue so they placed me on CoQ10 unfortunately it had an additive of piperine that helps absorption of Coq10 but it reduces absorption of both Nephedipine & Verapimil so taking Coq10 with piperine again affected the CAS. My Cardiologist has me carry a letter stating what my issues are and that it causes cardiac flow deviation proven via multiple heart caths at mayo with reproduction. The letter also tells them that at times I will present with severe angina with ischemia with no detectable biomarkers or obvious ECG changes. I shoudl be managed with a high index of suspicion for ischemia and be terated appropriately with IV Nitroglycern to resolve the angina. This works at most hospitals. But as I said Dec 2015 ER delayed treatment & MI resulted. Then this spring ER did great put me on the IV nitro but when they tried to titrate it down I went back into Angina. This has happned in past and I have been in ICU on Nitro 85mics for 5 days. But when the ER doc called cardiac to put me in hospital the cardiac physician said 'This is my hospital and I do nto think the Nitro is needed I am yanking the IV and discharging you." Fortunately ER Doc did not do so he called National Jewish talked to on call cardio and my Cardiologist both said to leave me on Nitro as long as I have angina. The mater was worse in that my FMD had kicjed in BYS in 250-250 range and up to 195/100 on 65 mcs nitro. The Bp's came down next day when both Cardaic and Renal arteries stopped spasms. The next am 7am I was at my Cardiologist & went in again. I was admitted and left on IV Nitro until the next Monday when they could to angioplasyy of Renal artery. Needless to say I ahve filed a complaint with the state on the Cardiac physician. I tell you all this to demonstrate just how many things can affected the COroanry Artery Spams. And to point out that you must be your own advocate for proper medical care.
Welcome to Connect, and thank you so much for sharing your history and such valuable insights. Here are a few discussions about fibromuscular dysplasia (FMD) that you may also wish to view:
In the meantime I'm tagging @melanieangel@enoevian@iagrrl@sylviam, and Connect Mentor @kariulrich, and I hope they will join this conversation to share their experiences about living with FMD.
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Yes it's tough having to live a whole different way. My disability was approved I think it was the fact all the Doctors reported I would not make it through a 3rd heart attack. Now i believe I will be going to a different stage with a lot less I can do. I see many Doctors in the next month and will know then
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Helpful -
Hug
1 ReactionI was diagnosed with prinzmetal over 16 years ago. Unfortunately over the last several years it is getting worse. I have had two known heart attacks due to the severe spasms. I am afraid to go to the local emergency room due to fear of the medical profession. The last time I had a severe spasm my cardiologist was out of town. I had a cardiologist from the emergency room rush me to a cath lab and wound up dissecting almost all of my right coronary artery which in turn led to bypass. Does any one from this group know of a cardiologist that specializes in Prinzmetal? I love m cardiologist but he is looking for answers to help me as well as it is rare.
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Helpful -
Hug
1 ReactionHello, @the3shus. Welcome to Mayo Connect, we are so glad you have joined us. I'm so sorry to hear of your heart problems and difficulty finding answers. I see that you are looking for a cardiologist who might be able to help you You do not mention where you live, however, you might consider visiting a large medical center, especially one with a medical school. Also, Mayo Clinic has 3 locations in Minnesota, Florida and Arizona. It would probably be helpful to make a trip in order to find the answers. The American Heart Association also has a website, perhaps you could find a specialist in your area who addresses this type of heart problem. I am also tagging, @kanaazpereira, the moderator of this group, who might be able to offer some suggestions. Please keep in touch with us and let us know how you are doing. Teresa
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Helpful -
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2 ReactionsHello @the3shus,
I'd like to add my welcome to Teresa's; this type of angina is indeed rare, and unlike typical angina, which usually occurs with physical activity, coronary artery spasms often occur at rest.
If you would like to consult with a cardiologist from Mayo Clinic, you can call any one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.
As @hopeful33250 mentioned, the American Heart Association (AHA) is a great resource, and here is some information from Mayo Clinic, too:
http://mayocl.in/1niap3N
http://mayocl.in/2m5NT5e
In the meantime I sincerely hope @lisab62 @anniestith @crazyheart @mxdpoet @tiny7 will also join in with more insight.
@the3shus, could you tell us bit more as to how you are currently coping with this condition?
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3 ReactionsDr Amir Lerman. Mayo Rochester MN
I have the same fear however most of the hospital Doctors know about me, it's the health politics keeping me from getting the treatment that works
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Helpful -
Hug
2 ReactionsIt's heart wrenching to read your story it also hits home too close to home I also have stents throughout my arteries in my heart 8 in the right inferior artery a couple of stance in each of the other arteries during these procedures they have noticed prinzmetal angina happening at the same time. Your comment you don't have to like it but you do have to live with it. I am up for heart bypass surgery I am wondering if they bypass all the arteries in your heart with new arteries from elsewhere in your body will the prince metal go away I have read all the post on this site and have not found any reference to bypass surgery correcting the problem I have not talked to my cardiologists about this as of yet. good luck to all the stories are endearing would be nice if they could find a cure for this.
Bob Smith
-
Like -
Helpful -
Hug
1 ReactionI have had Coronary Artery Spams multiple Arteries since I was 41. I also have Coronary microvascular disease. since 2010 I have been having many Episodes. It took until 2015 with many months spent at Mayo AZ & MN, then University Colorado and National Jewish. The University determined I have fibromuscular dysplasia (FMD) complicated by renal artery spams. The FMD causes my blood pressures to go up to high levels at times up to 250-260 over 90-120's. The high blood pressue in turn kicks in the Coronary Artery Spasm (CAS) causing Variant Angina. After Angioplasty of renal arteries I was still having issues because of hypoxia. National Jewish determined I have tracheobronchomalacia (TBM) Surgery for Trachobranchoplasty Dec 2015. I had MI Dec 2016 due to ER taking 2 hours to get my IV Nitroglycern going during an attack we could not stop at home by taking 2 Liquid Gel Nephedipine 15 min apart and 3 Nitro spray 5 min apart in between. But I still have intermittent hypoxia and that gain sets off the CAS. This year I then went into intermittent heart block which causes intermittent Bradycardia as well and it also caused increased CAS. We had to lower my Calcium channel blocker. My Statin caused muscle issue so they placed me on CoQ10 unfortunately it had an additive of piperine that helps absorption of Coq10 but it reduces absorption of both Nephedipine & Verapimil so taking Coq10 with piperine again affected the CAS. My Cardiologist has me carry a letter stating what my issues are and that it causes cardiac flow deviation proven via multiple heart caths at mayo with reproduction. The letter also tells them that at times I will present with severe angina with ischemia with no detectable biomarkers or obvious ECG changes. I shoudl be managed with a high index of suspicion for ischemia and be terated appropriately with IV Nitroglycern to resolve the angina. This works at most hospitals. But as I said Dec 2015 ER delayed treatment & MI resulted. Then this spring ER did great put me on the IV nitro but when they tried to titrate it down I went back into Angina. This has happned in past and I have been in ICU on Nitro 85mics for 5 days. But when the ER doc called cardiac to put me in hospital the cardiac physician said 'This is my hospital and I do nto think the Nitro is needed I am yanking the IV and discharging you." Fortunately ER Doc did not do so he called National Jewish talked to on call cardio and my Cardiologist both said to leave me on Nitro as long as I have angina. The mater was worse in that my FMD had kicjed in BYS in 250-250 range and up to 195/100 on 65 mcs nitro. The Bp's came down next day when both Cardaic and Renal arteries stopped spasms. The next am 7am I was at my Cardiologist & went in again. I was admitted and left on IV Nitro until the next Monday when they could to angioplasyy of Renal artery. Needless to say I ahve filed a complaint with the state on the Cardiac physician. I tell you all this to demonstrate just how many things can affected the COroanry Artery Spams. And to point out that you must be your own advocate for proper medical care.
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Like -
Helpful -
Hug
2 ReactionsPrinzmetal brings a lot of problems when you end up with a Dr that doesn't know about PA and/or will not get a Dr involved that does know at least something about it. Have you gone to a Hematologist that knows about PA? My potassium, magnesium, vitamin D has to be kept at a certain level
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1 ReactionI Also have to take Vitamin D, Potassium 2x a day & Magnesium 2 x a day with blood tests often to keep track of them. .
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1 ReactionHello @cherfenn,
Welcome to Connect, and thank you so much for sharing your history and such valuable insights. Here are a few discussions about fibromuscular dysplasia (FMD) that you may also wish to view:
Fibromuscular dysplasia (FMD): http://mayocl.in/2qfWQth
Fibromuscular Dysplasia and Brain Aneurysms: http://mayocl.in/2rwPHcD
In the meantime I'm tagging @melanieangel @enoevian @iagrrl @sylviam, and Connect Mentor @kariulrich, and I hope they will join this conversation to share their experiences about living with FMD.
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Helpful -
Hug
2 Reactions