Mayo Clinic Connect
Is there anyone else that has been diagnosed with this?
Liked by Teresa, Volunteer Mentor
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.
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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.
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.
Liked by Kanaaz Pereira, Connect Moderator
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 Also have to take Vitamin D, Potassium 2x a day & Magnesium 2 x a day with blood tests often to keep track of them. .
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.
Liked by Kari Ulrich, Alumna Mentor
@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.
@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.
Liked by Colleen Young, Connect Director, Kanaaz Pereira, Connect Moderator
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.
@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
Liked by Colleen Young, Connect Director
Very helpful reply, thank you @lisab62 ! I only live 4 hours away from Rochester Mayo Clinic. As soon as I can wrap my head around this diagnosis I may have to look into making a trip to see a cardiologist there. I feel I’ve just been left hanging in limbo without enough information. I will start a journal as you recommended. Your medication doses are higher than mine, I suppose they may modify them as needed. Thank you for your prayers!
I just requested to join the Facebook support group also.
All you have to do i call (507) 255-2446 Brandy may pick up tell her what you have and ask for the best dr they can recommend for your condition so you can get appointment and paperwork going. Everyone is so nice and helpful. Yes most of my meds are at max. My case is very severe there isn’t anything more they can do
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.
Liked by Kelly, Alumna Mentor
Hi @brenda88, I’ve had drug-gene testing, and it saved my life last year. Since childhood, I always had weird reactions to medications… some adverse but also many strange, atypical, and/or unexpected reactions. I have never received much pain relief from Percocet or Vicodin, and I would feel loopy from pain meds that normally don’t make you feel this way. I gain weight *very* quickly when taking Nexium and all other proton pump inhibitors. I would experience ovarian cysts when taking citalopram. I would always get canker sores when taking Vitamin C. If I took the drug Cafergot for migraine headaches, the headaches wouldn’t go away, but I would be awake for two-days-straight.
So, when I started going to Mayo Clinic in late 2015, and I was taking 12 medications at the time, I asked them to evaluate me for drug hypersensitivity (not evening knowing if that was a thing), and I’m so glad I did!
The first set of nine tests I had done at Mayo in March 2016 yielded seven polymorphisms (which from what I learned is a lot), and it enabled us to figure out that *many* of the medications I had been taking for up to 12 years were actually what were causing many of my illness symptoms because I don’t normally-metabolize them. (For most medications, I metabolize them too slowly, which made them build-up in my body). Medications that were making me ill were Metoprolol, Adderall, Nexium (and all other proton pump inhibitors), Cymbalta, Prozac, and many more. My symptoms included: continual weight gain and inability to lose weight, profuse sweating for no reason, chronic body-wide pain, horrible headaches, body-wide edema, liver pain and enlargement, borderline low blood sugar, ovarian cysts, horrible acne, and more. Ironically, my doctors at home were treating these very symptoms with the medications that were actually causing them. After finding alternatives to treat my “real” medical issues, I was able to cease many of these medications and many of my symptoms simply disappeared.
I had another set of 22 tests done this past March 2017 by OneOme, a Mayo-affiliated company. Some were repeats of the original nine, but this yielded even more results that now enable me to further-expand my list of drugs to avoid.
For instance, I learned that I don’t properly-metabolize pretty much all infectious disease medications, which in turn has given me the knowledge to know that I shouldn’t travel in certain parts of the world. I learned that the reason I feel little-to-no pain relief from percocet, etc. is because I’m a slow metabolizer of all drugs metabolized by that liver enzyme. I learned that if I am given the cancer-fighting drug tamoxifen after I reach menopause, it can actually cause me to have cancer. I learned that if I am given the drug allopurinol, my dermal layers will separate causing Stevens-Johnson Syndrome, which could kill me. Interestingly, I learned that I’m a slow metabolizer of caffeine.
I just met with one of my Mayo doctors last week, and he and I remain stunned that none of my 20 doctors at home realized what was happening to me because even if I didn’t have polymorphisms, I was taking so many medications that I was absolutely experiencing drug-drug interactions. (Many/most drugs are metabolized by the cytochrome P450 liver enzyme system, and there are many drugs and foods that inhibit these enzymes to work more slowly or induce them to work more quickly that normal, which them causes the enzymes to too-slowly or too-rapidly metabolize their substrate medications.)
The pricing is decreasing… my original nine tests done at Mayo were a little under $2,900; I wasn’t able to get insurance to cover them, but many people do. This was done via a blood draw at Mayo. With that said, my more recent OneOme 22-test set was only $249 and done via mail order once my doctor contacted them. I only had to swab my gums and they paid to FedEx it back. Mayo and OneOme have been working diligently at lowering prices, and OneOme has been working to gain certification on a state-by-state basis.
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