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
No_More_Scuba Guest
Posted
Molly,
Hope the spray worked and you are fit and able again.
you are such a kind person. Please, please don't worry. I was only tongue in cheek asking if you were in the area. I will be fine, I am becoming resigned to being here and Wendy will be here this afternoon before she goes over to UK. I beleive she is right now changing her and my, (lost the money there), bookings so that she will come back Tuesday night and be here Wednesday afternoon. Also her mum Joycie (89 but acts like shes 39), is coming over Thursday night and will spend a few days over christmas with us...... if they let me out for then. Hope the spray worked, I'll keep in touch.
As for Corbell..... not sure. I think there is a fight going on between his private practice and the hospital cardios and I'm stuck in the middle. I have just sent an email to my GP letting her know what has happened and how I'm feeling.... Hope I haven't set the cat amongst the pigeins there... or maybe I do!
Bishpick1 - i feel exactly like you. It is brilliant to know I have all these other people around the world who actually understand what I'm going through it makes a massive difference. Thank you.
Thanks all, stay safe, stay alive. Mike.
molly06010 No_More_Scuba
Posted
Apologies Mike, I didn't make it. Train times and driving in low light difficult. And needing to get on !
Have you had your scintagraphy ? How did it go ?
Your wife will be with you today, so that is cheery. Mebbe they will let you out later on or by tomorrow ?
Take care Mike - speak soon -
Molly
Bishpick1 Guest
Posted
It won't let you send a message to all so I figure most of you will see it sooner or later.
MERRY CHRISTMAS TO ALL.
No_More_Scuba Bishpick1
Posted
"Très bon Noêl et une très bonne année 2018" again can't send to all but meant for all.
Mike.
samuels No_More_Scuba
Posted
Hoping you had a fantastic and enjoyable Christmas with friends and family . Wishing you and all in this forum all the best for the coming New Year, may it be a prosperous year for all
cher42845 Guest
Posted
We have many of us in support group 'Coronary Artery Spasms' on facebook many have been to Mayo for treatment
garren88859 Guest
Posted
samuels garren88859
Posted
That's good that medication for indigestion worked for you, but like us all in the PM (prinzmetal angina) discussions none of the indigestion medication worked for us, we've been there .... done that. That's the first thing our doctors or cardiologists diagnose us with, indigestion and then second on the list is panic/anxiety if they can't find anything with their tests. PM angina is a rarer type of angina therefore cardiologists really don't give it a thought, it takes them months to years to concede that they were wrong.
deborah51700 Guest
Posted
Hello there!
First let's start with you are not alone. I have recently been diagnosed with this and even though my meds have been raised 3 times (Diltiazem 300 and Nitro Dur Patch 0.6 plus fluid pills) my body seems to rest for a few days on the increase and then I start right back at square one and have the attacks again. It is looking as if medication will not be enough. Very difficult to deal with. I am also suffering with severe type 2 diabetes and have recently had to go on insulin which is also not responding well. Blood sugars are still way too high and chronically in the 20s. I am only 49.
However, I mainly just wanted to say here is a cyber hug and hope you get better soon.
Take care
Bishpick1 Guest
Posted
Hi everyone, I've been gone for a while, late February the weather changes finally got to be too much. I started having severe attacks again. I had 2 hospitalizations and a spasam storm that HAS lasted for two months now. I had been improving for a year and now I'm almost back to the worst part of 2015, SUCKS!!
A good thing has come from it though that I need to share and I hope it's of benefit to the group.
My insurance case manager was listening to me "complain" about the emergency room and social security both trying to treate like I was a normal heart patient and worse, the Hospital was doing damage to more than my pocket book. The delay in treatment because of ER chest pain protacal was making each attack a nightmare that would leave me needing to be on IV nitro at 50 dpm for 2 or 3 days. This was happening despite the fact I was going to the same Hospital every time. I mean, they have my records, don't they teach ER doctors to read?
Well after listening to my 30 minute tirade, he had a suggestion? Get my cardiologist to write an emergency room protocol specific to diagnosed Prinzmetal Angina. Why hadn't I thought of it? I talk to my Cardio... believe me when I say, I wasn't shocked at his 1 word response, "why?". I've had to drag him through this whole jurney. I ask him what if I'm not at my hospital or unconscious? He agreed. I carry the written protocol in my billfold now. It has reduced the time to treatment significantly. Now when I go to the emergency room they treat me almost immediately for prinzmetal without doing all the other junk. The last two trips to the hospital resulted in no need for IV Nitro.
I have since added to my phone a medical ID. It's an app you can get for iPhone, I don't know if it's available for Android. It allows me to Simply hand my phone to the ER doctor, the medical ID is on my lock screen and it says to look in my billfold.
It's amazing, it reduced the time to treatment at least 10 minutes and stopped unnecessary testing AND they no longer treat me as if I'm a nut job saying I have Prinzmetals.
I hope this helps someone.
nima08421 Bishpick1
Posted
Any question marks, they refer to the notes from your precious visit.
Have Nothing but praise for the NHS.
andrew22534 Bishpick1
Posted
very similar experience but, it depends on the A&E person seen (UK) one visit was appalling 3 visits ok.. ish…, 5 visits very good 5 visits phew thank goodness for that - brilliant... the 4 not so good ones were all lack of understanding of the prinzmetal and not reading notes. Interestingly the GP in my surgery also have one I refuse to see one ok and one very good, Cardiologists one amazingly good one ok and two I wont see.... (though hopefully as my cardiologist has fed some info I researched around they may be see-able now... it seems pot luck is your friend or enemy... Some are very good some are appallingly bad. As Nima found some listen, sadly from various forums many don't (uk and other countries...) I carry a card with the info on and the scientific websites of information.... Good to see you back again, I had a tough month or two as well … so .. survivors.... we are...
samuels Bishpick1
Posted
Hi Fella's,
Long time no hear, hope all is going as well as expected for you all ? I have had nothing but trouble with my PM angina as well for the last 18 months, triggers are high emotional stress and now our winter, this week alone I have 3 visits to ED (ER) via ambulance, twice in one day because one ED doctor refused pain relief and refused to release 2-3 tablets to see me through to the next day when I had an appointment with my GP to get a new script. Anyrate ….
Bishpick they have a treatment protocol in my local ED , ECG AND bloods, if no changes out into the waiting room with pain relief, we use endone works quite effectively, unless of course paramedics cannulate me and give morphine while being transported, there is only a select few that do it I might add and these are the paramedics that are well versed in PM angina, the others are like, it's just coronary artery spasms ,what do you want us to do about it, you know that kind of attitude. I still encounter doctors that either do not believe it's coronary artery spasms, because it doesn't show up on an ECG, don't they get taught in medical school about this kind of angina, if the couldn't detect my heart attack(NSTEMI) on an ECG what hope do they think they will find the spasms all the time ? I experienced like you for a long time, put on a nitro drip, takes longer to get rid of the pain, morphine works almost instantly, or with in a couple of minutes if correct amount given, endone takes 25-35 minutes as it's an oral medication they give me on arrival at the ED, but you are absolutely right about doctors not reading history notes, this is where the confusion begins, they can't be bothered going back 15 years in my case, all they have to do is ask when did these actual attacks first start, if I said 15 years ago they could click back on their computers and read the first diagnosis or thoughts from the specialist(s), that would give them a baseline to work on ? then they could skip a year or 2 just to see where we were at that stage, then they could just quickly breeze through the rest as the important bits and pieces should be on the alert side of things, I.E in my case 2 NSTEMI's never picked up on an ECG only via a troponin blood test. I have noticed that we have an influx of new emergency doctors out or ED and sometimes I'm experiencing the problem I had years ago and also what you have experienced, I've even had a couple of young doctors ask me what is Prinzmetal Angina …. I mean C'mon really, I'm almost positive they don't teach rare conditions anymore, well prinzmetal angina any ways. I'm very fortunate here, everything in our public hospitals down here are free, everything even the ambulances, not so much in some states on the mainland for free ambulances, I have heard some states charge for the call out of an ambulance.
I don't know if my management plan is anywhere near yours but mine is, ECG and bloods taken, if no ECG changes I go out into the waiting room with pain relief and await results, generally 45-60 minutes, if abnormal I am taken in immediately for further treatment or repeat bloods and ECG's which of course sets time back and I could be in there for up to 12 hours if I haven't been admitted for anything untowards. I had to have words with my cardiologist about pain relief as these new doctors were refusing the endone usually given, I think they were thinking along the lines of a "drug seeker" Pfft when I have endone at home it keeps me out of the ED, it's just that I have been instructed to call for an ambulance if pain returns after taking 2 endone tablets 3-4 hours after taking the first one or my chest pain increases even with pain relief, you know, the usual heart attack symptoms, I have had to do this on several occasions . Cardiologist did write to ED requesting pain relief be given, because I get on well with nursing staff I asked if my cardiologist had put a pain relief note in my files, they had a look see and said "yep he's put it in" but you know what it says …. " give adequate pain relief " now I'm sure you can guess what some doctors consider adequate pain relief ? so now I have to have another word in my cardiologists ear because of this doctor this week refusing me opioid pain relief because Panadol doesn't work, ibuprofen nurofen , that kind of medication I can't take due to it provoking indigestion and upsetting the belly plus apparently you can't have that kind of medication if you are on blood thinners, like Xarelto and Pradaxa and a couple of other blood thinners, I can't take codeine, tramadol so they tried the endone and I have no problems with that one, but because opioids are addictive doctors won't prescribe them continually, this is another thing I have to discuss with my cardiologist, my GP is weaning me off the endone because she said it's not a drug she would ordinarily prescribe for chest pain/heart related problems, what right do other doctors have taking patients off their medications prescribed by their previous GP that has either retired or was offered better money elsewhere, the medication has shown them that it is effective but because it's addictive they don't want to handle the bullsh*t (excuse the French
) with the relevant authorities that keep an eye on drugs of addictiveness, S8 scheduled drugs I believe they are called here.
samuels andrew22534
Posted
Hi Andrew,
Have experienced the same, I have doctors and cardiologist that agree and disagree with the diagnosis, I've found it to be a type of power thing between cardiologists, if you know what I mean, I asked a cardiologist doing rounds when I had my last NSTEMI several years ago now, I said what's your opinion about the diagnosis of PM Angina, he said he concurred with the diagnosis and went into laymens terms so that I could understand it better and it definitely made sense, he's an associate professor in cardiology, my cardiologist doesn't think it's PM Angina …. so what do we do, I know what I did, I accepted the associate professors agreeance of the other doctors diagnosis of PM Angina, like you I researched when the name was put to it and everything just fell into place.
andrew22534 samuels
Posted
I agree working with those that support us and leaving by the wayside those that don't is the only answer. articles like the one Bish found do help!.... I pas them on as reading for my GP and Cardiologist…. Glad you are successfully surviving!!!!!!!!… I keep hoping one day they will find and easier answer.. but.... in he meantime we will just have to keep plowing on.... getting other to read the info and well just coping! good to see you back here, sorry you have had a challenging time!!!!
Bishpick1 samuels
Posted
I'm going to try to put together some materials for you to give your doctor. The reason why the endone works is the two drugs that will stop a spasm is nitroglycerin and morphine. The truth is in your case the endone is not for pain the reason why it works is it stops the spasms. Our doctors need to learn to get the point the spasms are causing slow damage that wears down our organs. They need to learn to stop treating the symptoms and start treating the spasms. The spasms can be stopped in less than 10 minutes if the doctors will use the correct drugs instead they try to say were drug addicts and wanting to get high and they leave us laying on the table for 30 40 50 minutes before they get anything that's going to help us and then we have damage. I've even tried to stop telling them I need something for the pain and started telling them morphine stops the spasms and they still will not listen. The closer I come to Nitro tolerant the less the Nitro works, the thing is you can't become morphine tolerant using it as you would Nitro it would be a treatment that would give me many many more years.
There's other things in your post that I've got literature that will help you with your doctor. But the pain Management's the one that just fired me off😖 hehehe.
samuels Bishpick1
Posted
Hi,
I'd appreciate any info on pain relief for PM angina to show my GP and cardiologist, they just keep telling me it's an inappropriate drug for the relief of spasms, unless they have personally experienced it, how would they know ? I really want to give it to my doctors (to prove a point and evidence based) about pain relief in regards to spasms instead of being labelled a drug seeker, well that's how they come across.
deborah51700 samuels
Posted
Hi there
I actually have replied a few times and it has disappeared on me so I will try again.
My meds originally after being diagnosed with PM by means of artery test through my wrist instead of groin where they place a probe in through your artery to your heart and could see I had diffuse coronary spasm in a number of arteries. I should note that in my case i only had one artery that had 40 % blockage. So i was initially placed on Diltiazem 160 i think then experienced severe systems after only 2 days relief, it subsequently enough ended up being raised 3 times my nitro as well since I was initially placed on 0, 2 then raised to ,6 so nitropatch was to be put on for 12 hours at night. I sometimes needed to put it on in day as well. I carried nitro spray as well. Also placed on :
Hydrochlorithiazide
25mg fluid pills
Furosemide 20mg fluid pills
Rosuvastatin 10mg =cholesterol med
Then had to stop Diltiazem as not working and causing even more fluid retention.
Then placed on Atenolol 50mg
And Nifedipine, sold under the brand names Adalat among others, is a medication used to manage angina, high blood pressure, Raynaud's phenomenon, and premature labor.[1] It is one of the treatments of choice for Prinzmetal angina.[1] Nifedipine is taken by mouth and comes in fast and slow release forms
I also due to living with constant pain have found that the morphine helps during serious attacks although not regularly prescribed due to the risk of addiction.
However seems to be what helps with the other meds and nitro for me.
I hope this helps
Hugs