Mayo Clinic Connect
Is there anyone else that has been diagnosed with this?
Liked by Teresa, Volunteer Mentor
Hello @lisab62. Thanks for asking this question. I have not heard of this before, but I looked up the term and the American Heart Association has a good description on their website:
What type of symptoms do you have with this diagnosis? Did the doctor prescribe any meds for your symptoms? Hopefully some other members of Mayo Connect will respond to your question. Best wishes, Teresa
Liked by Kanaaz Pereira, Connect Moderator
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It is extremely rare. I have an artery that spasms. It can collapse and looks like a piece of paper or to the point of a slinky. 5 heart caths showed each one in a different way. Mayo – Dr Amir Lerman and Dr William Mauck have been amazing. I’m on a lot of medication and have a Spinal Cord Stimulator. However there are some people having been diagnosed with it and they are having a lot of problems getting help because of the rarity. I’ve had 2 heart attacks and I follow all Drs orders to prevent another one. The symptoms can be the same as a heart attack however if I have a bad spasm it backs up my blood causing other problems
@lisab62 Thanks for giving us a little more info on your symptoms. If I may ask, what types of meds are usually used to treat this condition? Teresa
After years of trying different meds this is what I take now. Prinzmetal is very painful magnesium, iron, potassium, vitamin D levels are checked often bc they need to be at a certain level and as it progresses so will the levels
Venlafaxine xr. 150 mg. evening
Nifedipine. 30mg evening. As of 8-30-16
Isosorb mono 120 1daily as of 12-10 mornin
Hydrochlorot 25 mg. morning
Vit d. 50000 iu. 1 wkly
Sucralfate 10 mg. 4 daily
Nitrostat .4 mg
Pot chloride 7.5 ml 3 daily. As of 8-30-16
Alprazolam. 1 mg. 1-2 bedtime 1 daily
Metoprolol 50 mg 3 times a day
L-arginine 9 grams
Mag ox 400. 4 daily
Metanx Cap. 2 daily
Clopidogrel. 75 mg
Atorvastatin. 20 mg. evening
Hydroco 7.5/apap 325 mg. every 6 hours-pain
Ondansetron odt 4mg As needed
Cialis started 9/19/16 2.5 every 3 days
Lotemax.05 gel for eye pain
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.
If you are on Facebook search Prinzmetal. There is group
I know exactly what you are going through. Thank God he’s blessed with me with an understanding husband and
2 wonderful local Drs. They take everything they learn and have been able to treat other patients differently with
Success and our church has been such a blessing of support. I’ve just had a 2k iron IV have been mostly the past 3 months so I’m having to ease back very slowly I have a treadmill and stationary bike. I was approved for disability so throughout the day I do these 2-5 minutes very slowly it adds up over the week. But on the bad days I’m in the bed. I have a Spinal Cord Stimulator which helps with the pain
Hello @huge and welcome to Connect,
Thank you so much for joining this discussion and sharing some of your history. I cannot even begin to imagine how frightening the myocardial infarct must have been!
As @lisab62 mentioned, this type of angina is indeed rare, and unlike typical angina, which usually occurs with physical activity, coronary artery spasms often occur at rest. I hope Connect members @anniestith @crazyheart @mxdpoet @tiny7 will also join in and share some of their insight.
@huge, @lisab62, have your doctors explained what can trigger these spasms?
Stress or activity can cause it but majority of the time it’s nothing. I can be sitting or in bed and within seconds I’m fighting to breathe. During the 5 heart caths each one showed the spasm in different stages from looking as flat as a piece of paper to looking like a slinky. The bad ones back my blood up to the point of my carotid arteries swelling up, I become hoarse or I totally cannot talk and barely breathe. Mine is the worst the Drs have ever seen
Stress, physical exertion may bring on the symptoms, but quite often it just happens. I now have 6 stents in my right coronary artery. Usually, once I get a mild attack it comes and goes with each successive issue becoming stronger. I usually have to take a nitroglycerin dose under my tongue within a few hours of the first symptoms. Once that happens I am usually down on the couch for the rest of the day and often a couple of days. I am often short of breath and have little stamina, unlike how I was before this came along. As my cardiologist says, this is my new normal. I don’t have to like it, but I do have to get used to it.
I have a hearing for SS Disability in a couple of weeks. We’ll see where I go from there, but I am not able to go back to work.
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
Liked by Colleen Young, Connect Director, Kanaaz Pereira, Connect Moderator
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:
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?
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
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
Liked by Jamie Olson
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