prinzmetals angina
Posted , 96 users are following.
I have had prinzmetal's angina for over 7 years. Information about prinzmetal's says that pain occurs at night while in bed. Well not in my case. I get angina pain in the day time as well at night. Does anyone out there get pain in the day as I do ? I get pain at anytime, when it is cold or when I feel stressed and sometimes activity brings it on. I am taking a lot of medication for it , can't be without the nitro spray. Am having a lot of bad days lately hope to have a few good days soon.
Because prinzmetals is rare I feel a bit lonely having it , even though there are people who have the usual angina. It would be good to talk to somebody who prinzmetals.
14 likes, 699 replies
sshort Guest
Posted
I was dianosed with prinzmetal's 34 years ago. I've had syptoms since I was 23. I'm now 62. Like you, I have symptoms antime during the day & evening. Stress brings it on as well as exercise. It's something I have to live with. I know my limitations & deal with it. Don't let it get you down. It's not a big deal as long as you stay on your meds. I have sibblings that also have Prinzmetal's.
I'm lucky because I don't have blockage (I've read that some people do) & I don't have probems with my cholesterol. I do, however, have bouts with high blood pressure. (I've always had low bood pressure). I take meds for that & exercise & I keep it in check. All in all, I'm doing fine. I have check up every 6 months. Just had one & still doing fine. Hang in there. You're not alone.
laura40711 Guest
Posted
Hi, I'm new to forum, and was diagnosed fairly recently. I feel really isolated dealing with this, does anyone else get get their attacks during the day? I also seem to be going through a phase of having mor attacks than I had been having this past month or so, for no partiicular reason, not doin anything different, does anyone else find this happens? I'm taking 20mg twice a day of nitrate, should I try something extra? Sorry, lots of questions, consultant just confirmed I didn't have CAD prescribed nitrates and discharged me. Could really use some help please.
samuels laura40711
Posted
Hi laura, Yes I get day time spasms and to be honest I don't think the nitrates really help, even though the specialists say they do, they work to an extent but don't stop the spasms, the drug of choice is usually high doses of Cardizem, they do help much more, but also they don't work on or are not suited to everyone. I am always at rest or sleep when I get my spasms and they come in clusters, I have one bad attack at least once a week. I am also on Perhexiline and found that medication to really help but as time went on spasms slowly returned to big attacks, perhaps I haven't got the right levels in my system, see with this drug you have to have regular blood tests to see if you are actually at therapeutical levels, they definately stopped my night time spasms but haven't completely stopped the day time ones. Stress , extreme heat or cold weather can set Prinzmetal Angina off.
laura40711 samuels
Posted
Thank you for your reply Samuels, I'm so relieved it's not just me! I thought I was going crazy ?? Everything I read said it only happened overnight or early morning. I'm so glad I've found this place. Cold weather, and windy weather are big triggers for me, my worst is if I,m sickening for a flu or something the attacks go on all day. I will speak to my GP about reviewing my meds for sure.
linda07796 laura40711
Posted
10 years ago I went into cardiac arrest and was dx'ed with Prinzmetals angina. It happened at 5pm...
fiona82663 laura40711
Posted
I go through 'acute' phases when angina happens daily and increases in strength and length till I end up in hospital and am able to see a cardio for an increase in meds. Often a dramatic increase is needed to stop the Prinzmetals as its habit forming. As well as lots of Vado dillaters I am now up to 180 mg of nitrates daily plus a 5 mg patch and the spray. Once it has stopped it can go quiet for 2 or 3 years so you need a cardio who is going to decrease your dose when you can. You can become immune to nitrates so it must be done.
dave99924 Guest
Posted
Does anyone else have a constant or near constant migraine with this condition?
What was your trigger for prinzmetal? Mine was a bad reaction to pseudoephedrine. Faaahkkk.
What has worked best for you? Ive been on verapamil for years with mediocre success but am transitioning to amlodipine, what's been your experiences with those medicines?
cher42845 dave99924
Posted
Yes I have Vessel spasms in heart , head, eyes & renal arteries. Complicated by Fibromuscular Dysplasia (FMD), Variant Angina, Tracheobronchomalacia(TBM). trigers, cold, stess, High or low BP, Tachycar or Bradycardia, caffiene, meds Dicyclomine ANGINA
Nebivolol angina
Ergonovine ANGINA
Methacholine ANGINA
Metoprolol ANGINA
Nebivolol(BYSTOLIC) or any Beta blocker ANGINA
Methacholine ANGINA
Isometh-dichloral-acetaminophn Rash, ANGINA
tina73154 Guest
Posted
Kbcutie tina73154
Posted
Tina,
I did have a heart attack at 36 and later found out I have Printzemetals. This was probably the cause in addition to being pregnant and stressed out. I also did have 2 blockages but it was odd bc the other side of my heart was and is clear. My Cardi thinks a piece of plaque broke off during a spasms probably during labor and formed a clot. They just don't know enough about Printzemetlas but it's good you're getting tested. My doctor said the only true way to know is to do a cath and manipulate the artery to spasm and it shows up with dye. However, this is very risky for me since I already had an MI and he is almost positive that's what I have. I'm on Ranexa 2000 mg per day which is the number one if only med for this condition. It's not in your head, it's not just anxiety although that can contribute to it. Do your research and get many dr's opinions if needed. Best of luck and prayers for you!
samuels Kbcutie
Posted
Hi Kbcutie,
This procedure you have mentioned is not performed here where I am, my cardiologist tells me it has a high mortality rate in any age group, the professor I use to see told me he has seen coronary arteries disappear , as if they have vanished into thin air.
A lot of the younger cardiologists don't really believe in Prinzmetal Angina , they label them as syndrom X, etc etc
Kbcutie samuels
Posted
Yes he told me it is risky and I don't plan on having it done. I haven't heard about arteries vanishing...sounds scary! They treat me based on the symptoms of Printzemetals. I feel like Ranexa is the wonder drug but very expensive. I was fortunate and came across an independent pharmacy owner who has a fund for people that cannot afford meds. My husband shared my story and now all my medications are paid for indefinitely. God is good!
samuels Kbcutie
Posted
Same here, diagnosed on symptoms and due to my weird lipid profile, they say that the cholesterol eats/absorbs the nitric oxide in the endothelium and with low to no nitric oxide being produced sends arteries into spasms. I found that Perhexiline helped greatly but unfortunately raisng 2 young children can be a strenous job
. My son has been getting into all sorts of trouble the last 6 months and as you know emotional stress is a key trigger in ths condition.
I am lucky where I live, we have subsidised medicines, My angina medications alone cost $174.24 a month (take $59 off that total as the Perhexiline lasts about 2 months ) with the subsidy in place each script costs me $5.50 ( $33 a month) same with the Perhexiline in this situation lasts around 2 months as I said, so $27.50 for one month then $33 the next, quite a big subsidy, all our public hospitals are free including emergency department treatment. The drug I am waiting on is apparently available in the USA but it costs $1500 - $2000 USD per injection, ( apparently ) they believe this will help my weird lipid profile and stop these arter spasms , as you know it's real term is prinzmetal angina, they tell me that I should be eligble for this treatment once it has passed our pharmaceutical drugs bard, I can't think of their official government agencies name, pretty well much the same as USA's FDA
samuels
Posted
I don't know why and it's only this site that does it
....the spelling mistakes, well letters missing in words.
arter spasms = artery spasms
drugs bard = drugs board
angiemac56 Guest
Posted
Kbcutie angiemac56
Posted
It is very unpredictable isn't it? I was in the hospital over the weekend for chest pain. My dr is performing an outpatient cath this Friday to check on my stents and see if there is any more blockage. I'm hoping he can see a spasm happen also while he's there. It would be good to pinpoint the problem areas and get a stent there if needed. Today though I haven't had any chest pain and I'm starting to second guess myself. Does anyone else do this? You start to feel better and then you question if your problem is not really that bad. I actually thought about cancelling the cath but my anxiety will be eased once I just get it done. Also since my MI two years ago, my pain tolerance is so high I often don't realize just how much pain I am in or I think I'm just used to it. Let me know what y'all think! A bit nervous for Friday but this is my 4th cath so I know it will be fine.
cher42845 Kbcutie
Posted
I have COronary Artery Spasms, Microvesculary dieseas, Tracheobronchomaacia, Fibermuscular Dysplasia, PAc's, PVC's , Tachycardia 145 even with the meds I am on I have been in er & Hospital 4 tiems in past 2 months. Well never ignore it. To see the Coronary Spasm the cath has to be doen with an agent to cause the Spasm acetylcholine infusion is what they use at Mayo. Stents are nto affective for spasm though becasue the spasm will move to arrond the stenents. I am on Nifedipine 1x day, Verapimail 180 1 x day,isosorbide 120 1 x and if needed another 30 a day, Larginine 3000 3x a day. With a attacNitro spray 3x every 3 minutes, and isosorbide dinitrate 20 mg prn as neeed. I have undergone Enhanced External Counter Pulsation (EECP) for 35 visits that helped sigificantly and going for a second round shorty. I never never secodn gueese myslef I know what ti is and Mayo , National Hewish adn the University I go to all know what it is. I carry a letter with me from my Cardiac that explaisn the issues when I hit AN ER that does nto know me.
Kbcutie cher42845
Posted
Wow I literally just looked up everything you have and my goodness bless your heart, literally. I did not realize there were so many more diseases as there are with the heart. You just don't hear about these rare cases. My doctor is the chief of cardiology at St Lukes. I definitely trust him and tomorrow will be the first time he has done a cath on me. I switched Cardi's because the old one kept doing caths not finding any answers. My current doctor is the one who diagnosed my Prinzmetals. I will ask him about microvascular disease and Fibermuscular Dysplasia. He did tell me about the manipulatative spasm procedure but did not recommend for me. Probably because of my stents like you said. I am just hoping to get some answers why I've been so fatigued, drained and more chest pain. I'm on Ranexa 2000mg per day which helps tremendously. I really like the part about carrying a letter from your Cardi explaining your conditions and what to do. Part of me feels like if he doesn't find anything tomorrow I will look foolish for pushing for it especially if it can be fixed with medicine. Also, then do I go and get a third opinion? Sorry I'm just having a lot of anxiety which doesn't help the chest pain either. Took my xanex already and my parents are here to help with the kids. Any more insight for me? Thank you so much for your reply and sharing . It makes me appreciate how fortunate I am.
diana88467 Kbcutie
Posted
Wow you have 4 stents I don't have any but I do have this disease and it is unpredictable you don't know when it's going to be something serious or not as long as the doctor said you were going to be okay in the blockages are fixed there's nothing you can do except take your nitroglycerin and your other meds I do not have any blockages just severe spasms the doctor says I have the worst kind but I have gotten better so there is hope my male friends that have this have had bypass surgeries and gotten way better a hundred percent better ministop possible for somebody like me that doesn't have a major blockage not much to tell you but it's a real drag on your energy level I have none you probably have more with stents which you always feel insecure and afraid that you're going to have heart pain no matter where you are I have blacked out in restaurants before so I stay at home so good thing I like TV and I have my Facebook friends good luck to you