Mayo Clinic Connect
Is there anyone else that has been diagnosed with this?
Liked by Teresa, Volunteer Mentor
Hi, @brenda88. I add my welcome to Lisa’s.
Brenda, I was wondering if you have considered getting drug-gene tested? This type of testing is called pharmacogenomics or PGx. They test how your genes affect your body’s response to medications. Here’s more info from Mayo Clinic about PGx http://mayocl.in/1FygJlM
@kdubois and @dawn_giacabazi have both had PGx testing done and can tell you more about it than I can. I just thought it might be a consideration for you since you have several autoimmune conditions along with variant angina/prinzmetal angina, and take so many meds.
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Thank you for the info. I will check into this.
Very interesting and scary! I may have a trip to Mayo in my near future, I will ask them about it. Thank you very much for the info!
Yes I have Has Coronary Artery Spasms aka Variant Angina, PRINZMETAL Angina since I was 41 and am 63 now. I had NSTEMI dec 2016
We have support groups on the following facebook groups many have both Coronary Microvascular Disease (MVD or CMVD)
& CAS Cornary Artery Spasm
‘Coronary Artery Spasms’ ‘coronary artery spasm (prinzmetal’s angina) support group’
I was pretty stable with only a week or so of attacks every few years until 2010. When I developed hypoxia, Tachy/Brady. Hypertensive Emergency. I was referred to and traveled to Mayo AZ & Rochester both. I saw Dr. Abhiram Prasad until he left Mayo and went to UK. I then diverted an airplane flying back from Mayo. SO I then worked my way up the Colorado University system to top Cardio & Pulmonary and was then Referred to National Jewish Health NJH Denver. NJH it was detremined that I have not Only Coronary Artery Spasms aka Variant Angina (CAS) , Coronary Microvascular Disease (MVD) but also tracheobronchomalacia (TBM)., fibromuscular dysplasia (FMD) renal arteries and now a autoimmune issue They say Most Likely relapsing polychondritis. Meds are NIFEdipine 60 mg 24 hr tablet Take 1 tablet by mouth daily.8 PM Coronary Artery Spasm (CAS), Crestor 5 mg
verapamil 120 mg 24 hr capsule : Take 1 capsule by mouth nightly IN AM ****. Coronary Artery Spasm (CAS)
spironolactone 25 mg tablet Take 1 tablet by mouth daily.Reserve Potoasium
aspirin 81 mg EC tablet Instructions: Take 81 mg by mouth 3 times daily. when angian chew 3 as well
Coronary Artery Spasm
IMDUR ,isosorbide mononitrate 120 mg 24 hr tablet Take 1 tablet by mouth morning for Coronary Artery Spasm
arginine HCl (L-arginine) 1,000 mg Tab Instructions: Take 3,000 mg by mouth 3 times daily. , Potasium, Magnessium,
with attacks I take NIFEdipine 10 mg liquid gel capsule: Take 2 capsules by mouth 20 min apart up to 3 times daily as needed (for cp if sbp>90).
NitroGLYcerin spray 400 mcg/spray: Place 1 spray under the tongue every 5 minutes as needed for angina to 3x. So Nifedipine then 3 nitro spray then Nifedipine. Then I carry a leeter from my Cardiologist that stats I have VAS & MVD and if I present that even without ECG changes or increased Troponins I have CAS with cardiac flow deviation that causes my angina. It goes on to say I should be given IV Nitroglycern and remain on it until I can be titrated down with no angina.
The letter is because so many Physicians just do not understand this disease and dismiss patients and send them home with angina. My cousin Joe died from a complete occlusion from his first attack. I have friends in Cardiac Rehab that have had multiple MI’s one had 6 because the ER’s kep sending her home with angina. I have asked Dr Amir Lerman. Mayo Rochester MN to help facilitate a support group there where people can get advice and help. As well as referrals. I have met several physicians familiar with CAS at University Colorado, National Jewish, Avera Cardiac Hospital Sioux City SD, Langlade Hospital Antigo WI, Sutter Central Valley Hospital Modesto Ca, Stanford University Medical Center. But I have ran into more Emergency & Cardiac Physicians that do nto keep up with the research and just do not understand that even without increased cardiac enzymes, even without ECG changes the heart is being damaged. Many think that ECG has to have large ST segment increases and that is not true either. When I have spasms I can have no ECG change shown via heart cath with spasm or any of the following, T wave increase or inversion.05. flopping Twaves, various blocks, QRS or R deviation, Axis deviation particularly if it is LAD, flattened waved (In Cardiac Rehab we see the waves flatten then the angina starts often), and more
@cherfenn. Thank God for you❤️ Requesting a support group. I have seen Dr Lerman and he has spoken with my local cardiologist. I have a Spinal Cord Stimulator almost 2 years ago and now they have done all they can do. It has to be bad for me to go to the ER for the same reason ER Drs may not know. Some of the ER Drs here know bc they have seen me many times. My spasms back up the blood to the point my carotid arteries swell and my voice can be hoarse to no voice at all. I’ve had 2 heart attacks. The pain is almost unbearable
@iagrrl @cherfenn @sylviam @bluegiraffe I have not done much with meditation. I need to work on that area! Do any of you meditate? I beautiful friend, who use to be on here long ago @petunia (I believe it was you) who gave me great advice. Before she gets out of bed each morning she stretches and meditates about the day ahead of her. I am trying to do that again every morning and add Dr. Soods suggestion of sending out well wish and gratitude to people in our lives. How often do you meditate? And this may seem like a silly question, but what exactly do you do to meditate? My head gets so overwhelmed at the smallest stressors…. I am not sure how to explain this, but I truly believe it is a FMD phenomenon where you head feels so much pressure at times both physically and mentally… the brain fog sets in, concentration changes. My humble opinion is vasospasms or fast blood pressure changes. All I know is that the swooshing can get so LOUD! It can be so intense. I am sure mediation would help some during these crazy symptom surges. Just curious if anyone can relate to what I just wrote! LOL. What helps me is to lay down in bed, I tell my family I need to go horizontal. I do this several times a day and it can be time consuming, but it is the only thing that helps.
I went thru the programs both before and at Mayo to use visualization & relaxation. At ER an in ambulance they say I ma so very calm. Which I am . I stay calm do my visualization. Halps slow heart down and relax you but with bad attacks does not stop them. Have done bio feedback during attacks and it shows I stay relaxed.
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.
Thank you will look at those. I also am on a great support group for TBM on face book that is so helpful we have people from all over the world and Nurses from Beth Israel Deaconess Medical Center. ‘Cure TBM Patient Support Group’. There is also a coupe for CAS on faebook but no medical staff on those yet. ‘prinzmetal angina support group’ & ‘coronary artery spasm (prinzmetal’s angina) support group’ We use the groups to help each other and direct patients to physicians & and of course places like Mayo, National Jewish, Cleveland Clinic etc. These are all innternational so we get perspective from many nations.
@cherfenn welcome to connect and I am happy that you found us! I also have small vessel heart disease along with widespread Fibromuscular dysplasia, and it is a difficult to road to navigate. I have tried long acting nitro to help control the chest pain with no relief. Nitro sublingual helped the best. My experience is a bit different, I have FMD, but I also have Median Arcuate Ligament syndrome (MALS) that I have had surgical intervention for twice. After my surgery this second time around my chest pain has been under control and I have not needed to take the Nitro, however I have it on hand at all times. Out of curiousity have you been checked fro MALS?
I will verify with the physicians but they have chekced for that as well I have had MRO’s . CT’s neurology testing of several kinds.
Hi cherfenn and sylviam and welcome! I’m sorry this reply took me some time, but I am in the process of moving and that is occupying my time and energy. Anyway, I am 61 and was diagnosed with FMD last month, so I am pretty new at this game. I have neck pain sometimes, headaches sometimes, high blood pressure and that whooshing sound in my ears. I would encourage you to explore this site as well as info on the web in general. I always figure knowledge is power and if we can educate ourselves, then we can help others understand this mystery disease as well as advocate for ourselves in health care settings. It is frustrating to have a disease that so little is known about but I refuse to be a victim so I do what I can….exercise (walking, yoga), meditation, eating primarily a plant based whole food diet, cutting back on sugar, salt, fat and drinking plenty of water.
Thank you yes the web is wonderful.I also pull and read every research article I can find on my issue. Yes before I got bad I was doing 4 miles a day bit right now they keep pulling off exercise. I just got kicked out of cardiac rehab for the third time. But I still go out and fish and hike as much as my body will let me. I want to get back to 4 miles a day bit since I ma bad right now they are holding me back. I do nto use salt to cook nor sugar. Low fat diet for years. Bake my own breads sprouted wheat. Make almost all things from scratch to avoid the sugars, soy(Allergic to all soy including lecithin) and of course salt.
Happy to have found this discussion. I’m a 57 year old female and I have been having very painful chest pains that radiate up to my jaw for about 1 1/2 years. Every time I go to the emergency room they run EKG’s and they show different info each time, but the doctors always tell me I’m not having a heart attack and that with the severity of my pain it is more than likely a gall stone I’m passing. Had my gallbladder removed years ago. In January the pain of these attacks intensified, drops me to my knees and I can barely talk they are so excruciating. I’ve been to the ER about 7 times since the first of the year, 2 of those times by ambulance. I have had stress tests that don’t bring the attacks on so they tell me it’s not my heart. I even had one of these attacks while in the hospital for another issue and my blood pressure went up to 220 over 115, the EKG showed I wasn’t having a heart attack again, so they told me it must be a panic attack. I knew with the pain radiating up to my jaw that it was likely my heart, but no one would take me seriously. I finally went in to talk to my cardiologist and told her I would like further testing to rule out my heart. She gave me a prescription for Nitroglycerin and agreed to do an angiogram, which I had yesterday. She asked me during the procedure if I was having chest pain, which I wasn’t. After the procedure she met with my husband and told him I have variant angina/prinzmetal angina, apparently my arteries went into spasm during the procedure and she injected nitroglycerin, which stopped the spasms. They were still getting me back to my room so I wasn’t able to talk to her. Later a nurse came in and explained that what I have is rare and I asked if it can be fatal and can I have a heart attack. She replied yes to both questions. They put me on Metoprolol and Isosorbide Mononitrate (giving me a headache). I also have 5 possibly 6 autoimmune conditions: Lupus, Rheumatoid Arthritis, Autoimmune Hepatitis (just diagnosed a couple months ago), Sjogren’s Syndrome and Hashimoto’s. I’m on many medications and I have no idea if these conditions are in any way related to prenzmetal angina, I don’t think so. Anyway, the only info I have been given is the information from the nurse. I have an appointment scheduled with the cardiologist in a month, but until then I only have google to answer my questions and fears. I have to say I’m very scared of this condition, and I sit on pins and needles just waiting for the next attack. Do you all find that the medications I’ve been put on are appropriate and do they reduce the severity and frequency of these attacks? Thank you in advance for your advice and answers.
Yes Autimmune, thyroid issues can very well related to Angina CAs and other causes. there are articles out there discussing these issues. ‘Cardiovascular Involvement in Autoimmune Diseases – Hindawi ‘ , ‘How lupus affects the heart and circulation | National Resource Center ‘, ‘he Increased Cardiovascular Risk in Patients Affected by Autoimmune Diseases: Review of the Various Manifestations’
@brenda88. I take both Metoprolol 50 mg 3 times a daily and Isosorbide 120mg in the morning it does give you headaches lasting 2weeks for me. If you are on Facebook search Prinzmetal Angina support it’s a closed group helping each other. I see a Cardiologist in Rochester. I wasn’t able to have heart bypass so they put in a Spinal Cord Stimulator to help with pain. My cardio Dr told me this rare condition is extremely painful. If you haven’t done a full blood work up start making phone calls to see if you can find a Hematologist that is familiar with PA. It’s very important your potassium, iron, magnesium and Vit Dis enough to support your heart. If your upset try breathing slowly in and out. They may give you anxiety meds which will help. I highly recommend keeping a journal. When the spasm starts ends, what were you doing, heart rate and blood pressure and describe the pain where it is. Is it tight, squeeze, heavy pressure etc. also list when you took a nitro did it relieve any symptoms ❤️Praying
Metoprolol mad me much worse in fact that was the medication they put me on that ended up having the Cardiologist that was treating me to refer me to Mayo. Metoprolol is a Beta Blocker not recommend and in fact often makes things much worse. They kept insisting they wanted to try new ones some so at times they tried two more with disastrous affects. “The treatment for coronary vasospasm includes dihydropyridine calcium channel blockers (such as amlodipine or nifedipine), alpha blockers, and avoiding the use of beta-blockers. Animal studies have shown these to be effective, however no human trials have been performed. Beta-blockers are thought to cause “unopposed alpha receptor agonism”. Since the beta receptors would be occupied by the beta-blockers, substances (epinephrine, norepinephrine etc…) can stimulate the alpha receptors more easily causing worsened vasospasm. Avoidance of alpha agonists are important to treat coronary vasospasm. These include pseudoephedrine and oxymetazoline.”
Even the insert for it indicates this.
Beta-blockers may increase the number and duration of angina attacks in patients with Prinzmetal’s angina (variant angina pectoris). However, relatively selective β1-receptor blockers, such as metoprolol, can be used in such patients, but only with the utmost care.
These are meds that mad the Coronary Artery Spasms worse on me ANGINA Dicyclomine, Ergonovine , Methacholine, Metoprolol, Nebivolol Hcl , Ergot Alkaloids, Isometh-dichloral-acetaminophn
Also when I started on Coq10 I started gettiin worse and it was the Piperine/bioperine
Piperine inhibits metabolizim of Verapamil & Nifedipine reduces the effectiveness thus kicking off the Coronary Artery Spams.
Metabolizing enzymes inhibited or induced by piperine, and a few of the substances whose
bioavailability is affected by these enzymes. Metabolizing Enzymes: CYP1A1, CYP1B1, CYP1B2, CYP2E1, CYP3A4
Liked by Kelly, Alumna Mentor
The Piperine/bioperine is used in some COq10 it help it be absorbed but with heart patient it often affects absorption of med so they are less effective.
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