PRINZMETAL ANGINA/VARIANT ANGINA

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.

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.

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.

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.

@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.

Hello @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.

@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?

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.

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.