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
neale Guest
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I have not been on the site for a while as the medication has stopped my prinzmetal attacks ie 480 diltizam, 20mg nicorandil x 2 a day, but I get microvascular angina which although stops you from doing what you are up to, or could be at rest, at least once a week, but am walking - 3 miles daily and exercising again. I am in the uk, is anyone else? Is anyone else on such a high dose of diltizam?
andrew22534 neale
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neale andrew22534
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andrew22534 neale
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samuels neale
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Funny you should ask that question about Diltiazem, I actually asked my GP this the other day what was the highest dose of it and he informed me that 360Mg was, When I was first put on it, it actually helped but I think my body has built up a kind of immunity to it, Now that I know it does come in higher doses I can put this back into the lap of my GP or Cardio, The Nicorandil helps me but doesn't last as long as it's suppose to, with me it only seems to last 3-6 hours instead of the 12 hours it's suppose to.
I'm in Australia
lynette16906 neale
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andrew22534 lynette16906
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lynette16906 andrew22534
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andrew22534 lynette16906
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samuels andrew22534
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Yes I have read the PDF from the Australian Heart Foundation and I had to telephone them in regards of some settings off of my Prinzmetal Angina....I.E Cold weather and even just a simple puff of wind to the face, foor you see most doctors here think we are crazy when we mention that the cold weather set it off, I spent the afternoon in ED yesterday afternoon, everything returned negative then was discharged still in pain, the paramedics tried to get a line in but weren't succesfull.Just because it was Vaso Spasms (Prinzmetal Angina) I was shoved out into the waiting room.....
samuels andrew22534
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The Australian Heart Foundation were very surprised to hear that I have had experiences with doctors that didn't believe me about the cold weather ....They informed me that it was a text book symptom and was taught in medical school as a trigger to Prinzmetal....They suggested I print off their PDF and show the doctors that do not believe that cold weather sets it off
andrew22534 samuels
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samuels andrew22534
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I'm a motor mechanic by trade and I tell you I'd love for one of these doctors to bring me their car for repairs, perhaps I could spin them a line that the "heart " of the motor is buggered knowing full well it was something else
let's see how they would feel in a mis diagnosis treatment or a diagnosis they have never heard of before ....How I'd like to put the boot on the other foot.
andrew22534 samuels
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samuels andrew22534
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If I thought is was "pure" stress/anxiety I wouldn't present to our emergency department.last week I had 3 visits to our emergency department the second time I was taken in nothing was done for the pain, I had "know it all " paramedics that wouldn't administer pain relief then I was seen by the ED doctors and they wouldn't even offer any kind of pain relief, my test came back negative which was good news but I was discharged in pain and I didn't get any sleep that night and had to recall for an ambulance the next morning, yet again I get "know it all " /unsympathetic paramedics, arrived back into ED was seen promptly ECG and blood taken for trops and doctor ordered Endone X 2 and after around 35 minutes the endone started to kick in and the pain was diminishing and when blood test came back negative I was asked by the doctor if I would stay in for the night, the reason she asked that is because I said that I'm getting sick and tired of having to call an ambulance all the time to come into emergency and that because the night before when I was discharged in pain (7/10) I told this doctor that my firearm locker keys looked so attractive and that I stared at them for sometime, she understood my frustration with the Prinzmetal Angina but was more concerned with my mental state because of what I had said to her, she didn't want me to leave but I assured her that all those thoughts had gone now that the pain was finally taken away and that I have 2 young children and that I didn't want to cause to much paper work her or the rest of the department..after a short conversation I convinced the doctor that I was fine now and had no more of those thoughts because the pain has gone now.
I fully understand where the doctors are coming from with pain relief and it's addictiveness but I'm not in there everyday asking for it because 9/10 the GTN spray takes care of my chest pain along with the Nicorandil if the pain occurs around the time I'm due to take it. I actually had one doctor accuse me of drug seeking and I spat it with him, I said look mate if I wanted pain relief everyday I wouldn't be here for it as it's readily available "elsewhere" he shut his mouth from then on. I'll be glad when summer finally hits as I don't have as many attacks during summer, we have about a month of spring left to go even though we have had well above average temperatures we still get the odd cold windy days and as you know that can set it all off. When I get the caring paramedics which is around the 99% they get a line in and get the morphene going and by the time I get to the hospital I'm pain free...in the last month I have had that 1% that doesn't do anything for me while transporting me into hospital, yesterday the best the could offer was what we call the "green whistle" because the paramedic couldn't get a line in after 2 attempts , they didn't want to keep jabbing me, I said I don't mind because the needles don't hurt as much as my chest pain, the "green whistle " actually worked for me this time but when I had used it all the spasms had started again about an hour later and yet again sent home in pain, Iv'e had spasms on and off all day today but nowhere near as bad as yesterday as in pain wise.
andrew22534 samuels
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neale samuels
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I am dismayed for you at the number of prinzmetal attacks you are getting and yes I know how bad it is as I had some bad ones in February causing heart damage . Have they tried diltizam at 480 and nicorandil to try and stop them! Only asking as it worked for me?
samuels neale
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Yes I am on Diltiazem but only at 360Mg's as they tel me that's the highest dosage rate for any kind of Angina, I enqured about a highr dose as when I first was put on them they did indeed help but my body seems to have built up a resistance to them, I am also "apparently" on te highest dose of Nicorandil as well 20Mg's twice daily, I find that they work as well but are now only lasting for around 3-4 hours a day instead of the 12 hours. If I et the spasms around the time I'm due to take my Nicorandil after about 30 or so minutes the spasming is decreasing and then disappears.
here's an example of one of my bad days... have the spasms early of the morning take my anti angina medications come around 10-11am the spasms and pain are back and GTN will help but only works every 5-10 minutes then the pain graduates back up and after having up to 16-20 sprays is when I decide to call the ambulance. I have been told to call after 4 sprays if pain is increasing but I know what it is and so do the ED doctors but I have had several ED doctors tell me off for leaving so long especially when I've had 2 AMI's and a TIA, because the ECG doesn't show the spasming, Iv'e had a couple of abnormal ECG's but they have corrected themselves, the only true way for them to know if I have had another AMI is by doing the blood test for Troponins.....
samuels neale
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Yes I am on Diltiazem but only at 360Mg's as they tel me that's the highest dosage rate for any kind of Angina, I enqured about a highr dose as when I first was put on them they did indeed help but my body seems to have built up a resistance to them, I am also "apparently" on te highest dose of Nicorandil as well 20Mg's twice daily, I find that they work as well but are now only lasting for around 3-4 hours a day instead of the 12 hours. If I et the spasms around the time I'm due to take my Nicorandil after about 30 or so minutes the spasming is decreasing and then disappears.
here's an example of one of my bad days... have the spasms early of the morning take my anti angina medications come around 10-11am the spasms and pain are back and GTN will help but only works every 5-10 minutes then the pain graduates back up and after having up to 16-20 sprays is when I decide to call the ambulance. I have been told to call after 4 sprays if pain is increasing but I know what it is and so do the ED doctors but I have had several ED doctors tell me off for leaving so long especially when I've had 2 AMI's and a TIA, because the ECG doesn't show the spasming, Iv'e had a couple of abnormal ECG's but they have corrected themselves, the only true way for them to know if I have had another AMI is by doing the blood test for Troponins.....
andrew22534 samuels
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samuels andrew22534
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I tried his way first by only taking the half doses and after 2 days I was getting chest pain / spasm's everyday, to start off with they were only minor ad weren't worrying but after the third day the duration of the pain was lasting longer soI gave it another week but it was just getting worse and I had 3 - 4 trips that week to our emergency department via ambulance, after being given the all clear I couldn't get in to get in to see my GP, I had to see another doctor at his surgery and the female doctor I saw increased it back up to my full dose and after a day or two everything was settling down but I was still having that one "bad" day a week which required me to call an ambulance.I then decided to cease the medication to see if it could get any worse than being on half dosages, it sure did,I was finally able to get into to see my own GP because as you know we get sick of going into emergency, he actually read my cardio's letter and decided to stick with the half dosage rate again why I agreed to it I don't know but I did, chest pain / spasm's returned more frequently and yet again back into emergency 3 times a week because the pain was to much, I was able to get back into my GP again and he said it looks like we will have to increase it back up to max dose again, things settled down again but I still have that one trip a week via ambulance....
lynette16906 andrew22534
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andrew22534 samuels
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andrew22534 lynette16906
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samuels andrew22534
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I had an intereting discussion with another Cadiologist the other day as I was admitted for my Prnzmetal, I had asked him about high Cholestrol and if here as any links with the chest pains
samuels
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samuels
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So with this explanation given to me has any of you high cholestrol ? I do it was extremely high but have managed to get it down via diet and exercise when I can, it is still considered to high my cholestrol, mine is down to 7 from 20 but for some reason my trigylcerides have doubled it's sitting at 10. I don't know if those numbers would be the same as your countries pathology testing ..I know these numbers above would mean nothing to someone from the USA as they some how use different numbers..... same tests but they must use a different technique ..perhaps like in measurement I.E ... Imperial and Metric ?
andrew22534 samuels
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neale samuels
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it is very exciting about the new cholesterol medication. I do know the importance of keeping cholesterol low to stop prinz metal. Also vitamin d3 ,and oestrogen for us ladies . The main think is exercise I bbelieve too but when you have microvascular angina too, it is a balance! Off to see prof Kaski in a couple of weeks, so will let you know if this drug is available in the uk.
lynette16906 andrew22534
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lynette16906 neale
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andrew22534 lynette16906
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samuels andrew22534
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all my records seemed to have grown legs on my last admission last November
as I was suppose to have a follow up with Cardiology and have an increase in Cardizem but my GP didn't have any letters from Cardiology stating that my Cardizem needed to be increased from 360 Mg a day to 480 Mg (240 Mg tablet taken twice a day) My GP had to chase everything up and now everything is back in order, I see Cardiology next month so I will ask again what this injection is for cholestrol and what other conditions it would be used for.
Now as I had a different Cardiologist on my last admission to hospital I'm not guaranteed in getting to see him at my next appointment but he has improved my spasms greatly with one simple adjustment of my Cardizem, my regular cardiologist was taking me backwards, he actually halved all my medications with the exception of the Nicorandel, big mistake that was, Anyrate on my increased dose of Cardizem and wowsers what an improvement, I haven't had severe spasms since the 5 of January this year, (this episode was bought on by a stressful/ angry event ) only 1 visit to our emergency department to date. this time last year I would of beenat least 5 times. since the Cardizem increase I can do more around the place, I seem to be tolerating the drug well and has bought my blood pressure down to normal as well I'm now sitting on 127/80 where as before i was fluctiating around the 170/90 and 160/90.
things are looking up for me this summer just have to wait and see what winter has in store for me, with a bit of luck the Higher dose of Cardizem will keep my Prinzmetal Angina in check
andrew22534 samuels
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samuels andrew22534
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All the best and if put on to it I'm sure you will notice the difference with Cardizem and Prinzmetal Angina, Cardizem is a calcium channel blocker and I was also told to ask the Cardiologist about being put on a Beta blocker as well to reduce the chances of having anymore NSTEMI'S but I think I'm popping enough pills as it is now.
andrew22534 samuels
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samuels andrew22534
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Had Cardiology follow up , I saw my normal Cardiologist and I asked him about this new drug (injectable) he didn't seem to know as much about it as the other Cardiologist that I was speaking to, he didn't even know the name of it
, all he could tell me is that it was only for high cholestrol and that he in his opinion couldn't see it working on vasospasms, All he could tell me is that it is an expensive drug and may take up to a year or longer to come out but I am a prime candidate for a subsidy for it when it does come out as I "apparently " have a rare lipids profile...
I'm going with the third cardiologist because what he explained to me made a lot of sense....they all play a part with each other, to me if cholestrol either depletes or eats the nitric oxide well what would be the next thing to occurr ? Vasospasms I believe ? which is Prinzmetal Angina..... So as I said I think they all tie in.....
samuels neale
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See my responce to Andrew, that's all I could find out about this new cholestrol drug, my normal cardiologist didn't seem to know to much about it other than it only being used to treat high cholestrol....he couldn't even remember the name of the new drug, all he could tell me is that it will be very expensive
andrew22534 samuels
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samuels neale
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I was put on 480Mg's of Diltiazem, works wonders, no emergency visits for awhile, a couple but nowhere neare as many, well we got our cold weather earlier than expected this year and have been in to emergency at least 3 times a week, we are back into spring again now, prinzmetal settled down again but then for some funny reason it flared back up againand the pain is really getting up there, the worst I have experienced....on a pain scale out of 10 mines been getting up to 8 lately. I have also now been told even warm weather can trigger prinzmetal angina off ...well any angina off now,we just can't win.....lol... although I'm starting to slowly come right again, we have had a real warm spring, the hottest spring I can ever remember, already got bushfires going all over the place.
donnasworld neale
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Hi Neale, wish I could contact St George's hospital as I'm in Italy so they just assume the language issue has me confused. I m not I have prinzmetals angina. So difficult to explain to those without a clue.