Prinzmetal angina

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I was diagnosed with prinzmetal angina about a year ago, after having 3 heart attacks. I am only 37 years old. I take diltiazem & mononitrate pills & nitro patch as well as nitro spray. I have episodes so often. They hurt so much. The most painful ones are when the pain shoots up to my head (instead of down my arm) It literally feels like head is going to explode.some days are really bad. Like today, it's only 11:30am & I've had 6 attacks already. I hate having this disease & it'd only been a year & a half. I can't imagine having this for another 20-30 years. was also diagnosed with fibromyalgia almost 10 yrs ago. Plus I started early menapause, which they believe was brought on from my heart attacks. This has all caused me such depression. I always question how I will continue living like this. I have 3 kids that are my whole world & an amazing , patient & loving & undurstanding partner. If I didn't have these 4 people in my life I don't think I would still be here. I'm having such a hard time trying to get through each day.

I have tried researching prinzmetal but there really isn't much to read. I wonder if this is something I'll have for the rest of my life? Do each attack I have cause damage to my heart? Is there medication out there that will work better then what I'm already taking? Could I have genetically passed it on to my kids? Are there vitamins I could take to help (& some that may help my fibromyalgia or early menapause)

I've never met anyone with prinzmetal so it would be really nice to talk to someone that feels my pain.

Anyways, that's my life in a nutshell. I hope to be able to chat with others, like me. To anyone taking the time to read this, thank you!! ♡

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9 Replies

  • Posted

    Hi Nichole I have sent you a message with a link for a support group for Prinzmetal angina hope this can help you feel not so alone. Lindax
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    • Posted

      Linda89207. Would you mind sending me the information for the support group? My bf has been diagnosed with this and it's getting worse day by day. He doesn't know how to handle it anymore or where to turn. I'm starting to feel that way myself now. Any help would be more than appreciated. I'm glad I found this forum. Rachael

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    • Posted

      Hi Linda, I would love the link for the support group too please. I was diagnosed with Prinzmetal's angina in June, 2016 and would love to talk with others to find out their experiences. Thx

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  • Posted

    Nicole!

    Oh my goodness, I am so glad you posted this! My story is very similar to yours. I also have Printzemetals after having a heart attack two years ago at age 36, just two weeks after delivering my baby. I had 2 blockages at 99% and two stents placed. I had to switch cardiologists because I kept going to the er with chest pain but had no remaining blockage. I was then diagnosed with it by the second cardiologist. You're right there is not much information on this disease. I take 2000 mg Ranexa every day. My question is like yours...will I have this the rest of my life? Will I always need medication which is so expensive? I left my job as a sales exec so I could do life without being hospitalized. My husband and I have been married 12 years and I have two girls, 2 and 5. I have had anxiety and depression and take Wellbutrin for that. Call me anytime to chat. I could use another friend with this disease.

    Regards,

    Emis Moderator comment: I have removed the phone number as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

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    • Posted

      Hi Kbcutie

      Unfortunately you will have this for life, unless they can come up with a cure, there is a drug available in the USA , quite expensive from what I have been reading, Cardiologist are pretty keen on this new drug, they are eagerly awaiting it's release where I am, it's still going through clinical trials in my country, it's for cholesterol but it is also believed to be useful in unstable angina as well, the drug is an injectable one and depending on the severity of cholesterol and angina it is administered once to twice a week at a cost of around $2500 - $3000 USD. It's called PCS-K9

      I have found high doses of Cardizem have helped mine, also Nicorandil, this needs to be adjusted depending on severity as well,the drug I have found the most helpful when it's not cold or I'm under stress is Perhexiline seems to have kept my weekly vists to our emergency department. Perhexiline is used for refractory angina but seems to be working with reducing my spasms.

      Unfortunately I am a frequent flyer to our emergency room with this condition, I do have mild heart disease but nothing to concerning, however I have to have a troponin blood test each time I go in as I have had 3 NSTEMI's (not shown on an ECG) The pain is the same all the time even when I had the heart attacks so differentiating wht's what can be difficult, I never know if it's a mild heart attack or not until I have had the trop test. very frustrating and embarrassing having to call an ambulance all the time and heading into the emergency room.

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    • Posted

      Samuels,

      Thank you for the information on the advanced technology for a possible cure! I will definitely research the PCS-K9 as well as the other drugs you listed to deal with spasms.

      It sounds like your case is more severe and I hope there is a cure soon! I know what you mean as far as frustration goes for knowing what you're dealing with. I have anxiety and at times panic attacks. It is difficult to determine if it's my heart or the anxiety which makes me more anxious. Usually I take Xanax and it goes away but I still have extreme fatigue or spasms afterwards. I appreciate your reply! Thank you!

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    • Posted

      Hi Kbcutie,

      I too use to suffer panic / anxiety attacks, I suffered for 26 years with them, I was only able to escape them around 4 years ago now, I have had one full blown attack since but was able to handle the situation through CBT that I was taught and the attack was over just as quick as it came on. I'm weaning off Kalma (Alprazolam ) I've been told Xanax is exactly the same but Xanax didn't do anything for me, I don't know why it didn't if they are exactly the same drug.

      After 26 years of suffering panic you get to know the difference between real heart problems compared to the panic induced chest tightness, it took several doctors to wake up to this, after putting me on medication for angina (spasms ) and finding that at first they helped, they thought, well hang on maybe he is experiencing angina even though at the time my arteries were in pristine condition. Over time my body built up a resistance to the original medications prescribed for angina, especially the GTN spray and also coming accross a cardiologist who knew a fair bit about prinzmetal angina, see I have what's called familial hypercholesterol lipididemia, now here is how this cardiologist  explained it to me, because of my lipid profile what was happening was the cholesterol was eating /absorbing the nitric oxide in the endothelium and when nitric oxide isn't being produced or lack of your coronary and small blood vessel in the heart go into spasms causing all the grief, they will not always show up on an ECG, your heart can look healthy but you can still suffer the spasms, this is why a lot of doctors get so complacent when just about everything comes back negative in regards to the heart. My first mild heart atack was back in 2012 and I was taken to the cath lab, now I had an angiogram 4 years before and remember I said my arteries were in pristine condition ? 4 years later (2012 ) after my mild heart attack they found a 50 -60 % occlussion in my right coronary, I suffered another heart attack the following year (2013) and a question mark on the 3rd one in 2014, I don't think the troponin level was high enough for them to confidently say I had another mild heart attack, also this was all picked up in the troponin blood test. I had another angiogram in Feb this year and now I have  40 - 50 % stenosis in the L.A.D, They tell me this is normal for someone my age and lifestyle (smoker) A lot of doctors believe you have to have a certain degree of a blockage to have coronary artery spasms, depends what cardiologist you speak to, they have their own opinions about spasms, a few say that you can have healthy arteries and still get spasms, that's what makes this condition so hard to diagnose or a lot of the younger doctors have never heard of it like some down here where I am. They don't use the provocative diagnosis here as they say it has a high risk of dangers including death.So frustrating for the sufferers because we all feel like nutcases until we find that doctor that finally says "ahh yes" I do believe you have what's called prinzmetal angina or MVD (Micro Vascular Disease ) or Syndrome X.

      I can fully understand how you must be feeling but if you can feel the difference between your chest pain and a panic attack , I mean you know your body the best.

      Now the way I look at it is, panic attacks we are inundated with a flurry of symptoms that seem to overlap just about every disease known to man pretty well at once in a single attack....lol... however if you develop angina and you report the central crushing/ squeezing pain in the middle of the chest radiating to the left arm and shoulder, break out into a cold sweat and have pain shooting up into the jaw and back, that would be enough to send one into a panic attack to start with because it can be frightening...with those kind of symptoms coming out of the blue either exercising or resting indicate some form of angina. can you see what I'm getting at ... we all know our bodies and what it's trying to tell us.

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  • Posted

    Wow, this is great! I hope someone can give me some feedback. I'm 49yo, had apt of stress the past few days, had a bad bout of chest pains last night starting at 1:30 (flat on my back, woke me up probably). So, at test. Lasted about an hour, brief intense spasms under my left of center breastbone that slowly degraded in intensity, about every minute or two. I researched and found this diagnosis, went and had some yogurt, then managed to fall asleep a bit later. Only a few spasms today. Sometimes when I bend forward. Never during exercise and I work out strenuously twice a week. I had a nearly complete cardiac work up a month ago for another bout-nothing physically wrong with my heart (no angiogram tho). Nurse said probably reflux. It went away so I stopped worrying. I've had this years ago, several times, including two doc-advised trips to the ER (these were during the day but same kind and also at rest). Nada found and it stopped on its own. This bout was worse (and now I'm anxious about going to sleep tonight!). But it fits! The spasm-like feeling, at rest, not associated with food intake. What to do? I spoke to the doc's office, asked for referral to a cardiologist, and they said to go see them again (reflux) but go to ER in meantime if it happens again. I don't want to cause damage to my heart. If this is angina, can I? Ugh! I have dysautonomia that flares under stress and my Bp and pulse tank. Yesterday evening was one of those times when standing up I felt like jelly and the Bp monitor errorred out. I've had a pulse under 50; Bp low enough that the docs office scolded me for not calling an ambulance. Look, I've done the ER thing so many times and they don't do anything because with time, I'm ready to go home. It's more a reassurance to me (a few times, my neighbor or husband has taken me to the ER parking lot during these things, just in case). I'm trying to figure out what my risk is if it's this prinzmetal angina. Thanks!!!

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    • Posted

      You are wise to stay on top of your symptoms and your health! Your symptoms sound like classic Printzemetals. I want to share this not to scare you but when I had my heart attack the first ekg and tests showed nothing. An hour passed and they did another one, then it showed a mild heart attack but I was told it was over. Then my pain got so bad on my 5th syringe of morphine they tested again and it showed up as a major heart attack getting worse. I had two blockages 99% and went into stage 4 heart failure because it took so long to diagnose and get up to the cath lab. My Printzemetals led to an MI and no one ever detected it also because of my low BP and my age of 36. Get an appt with cardiologist asap and get full work up with stress test (calcium test). Of course if it gets worse go to er and push for a second ekg, testing and chest ex-Ray. Always have aspirin in your medicine kit at home or on your person. It's unfortunate but you have to stand up for your patient rights. I knew I was having a heart attack and told the ems and they said no you just had a baby could be a blood clot. I had all the classic symptoms but it started as what I thought was heartburn. It happened at 2:30am after I just got done feeding my 10 day old baby. It can happen to anyone. Just know your symptoms, ask questions and always be prepared. In the mean time research your cardiologists. There is not a lot of information about Printzemetals because it's so rare. You can take medicine to maintain this chronic condition and live a healthy life. The keys: prayer, diet, excercise, lifestyle, stress management and a good doctor! I pray your symptoms improve!

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