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Nitro spray

Posted , 5 users are following.

Sheri54949
Sheri54949

I have Prinzmetal and my doctor gave me Nitro spray for when I have an attack, unfortunately it does not work for me. Acturally none of the meds he has put me on helped. I'm curious is there anyone else that does not get relief with nitro spray and if so what do you use that helps?

 

0 likes, 17 replies

17 Replies

  • samuels
    samuels Sheri54949

    Posted

    Hi Sheri, I was diagnosed with Prinzmetal Angina myself, Nitro spray did help me for a while but my body has become immune to it, I am on the best mainstay of medication and I still experience angina, especially in the winter months, luckily we are in our summer now, although I am still finding myself attending emergency at least twice a week, I'm on 120 Mg's of Monodur, 20 Mg's of Nicorandil, 600Mg's of Cardizem (diltiazem- it has only just been increased in the last day) Nitro spray and low dose aspirin, I found that the Cardizem worked the best, I was originally on 580 Mg's, my cardiologist is starting to wonder if it is actually Prinzmetal Angina now as all of those medications are suppose to relieve the spasms, so he is going to do another angiogram and perform another test to see if I do in fact have Prinzmetal Angina, it's not the test you read about on the internet, where they inject ergonivine (something to that effect,the drug name) into the arteries, it's not performed here where I am due to it's high mortality rate, I have had that many discussions with various cardiologists, 2 say yes it is Prinzmetal angina and 2 say no they don't think it is... so go figure, I have read in some of my research that some papers say that any nitrate short or long acting do not always work on Prinzmetal sufferers and also does not always show up on an ECG.I will let you know in a week how I go on my increased dose of cardizem,it worked previously but we had an early cold front come in around the end of march(winter came early) this year and as you know cold weather is a common trigger for Prinzmetal Angina
    • Sheri54949
      Sheri54949 samuels

      Posted

      I talked with a dr who does research on Prinzmetal and he said 20% of Prinzmetal patients do not respond to medications including nitro.  I switched to a new cardiologist and he said he has never had a Prinzmetal patient that didnt respond to nitro. I told him about what the researcher said and he dismissed me. He now wonders if I have Prinz because I dont respond to nitro. I was curious how many other Prinz patients also dont respond to meds. I wish these cardiologists would get on this site and see what its like to live with this condition. He wont do a cardio cath with medication to provoc spasm due to high mortality rate. What tests is your doctor doing to confirm Prinz???  I have read that spams dont always show up on ECG and when I mentioned that he seemed like that was not true. I'm am very frustarted. Have you had an attack that showed up on an ECG and have you had an attack when it didnt? 
  • andrew22534
    andrew22534 Sheri54949

    Posted

    Hi Sheri, i use GTN but it only works "1/2" the time failing that i check with Alivcor and if that doesnt show anything untoward i carry on... as best i can but either slowly or just ambling around. if that doesnt work then i rest up. I find sometimes walking slowly increases demand and the heart responds and starts ot behave (note sometimes) i take a twice daily dose of diltiazem in slow release form, overnight mononitrate and for the intermittent Arrythmia i take 200mg flecanide... when episodes happen, just had added in a trial of 35mg trimetazidine and now on anti platelet sticking drug too.... (as i also have ME i am also being put on a muscle relaxant very shortly once all the interaction checks are complete) it will be interesting to see if the trimetz also helps the ME and if the ME drug also helps the spasms..., i will pass on the ruslts on here if it makes any difference
    • Sheri54949
      Sheri54949 andrew22534

      Posted

      Andrew are you saying when you have an attack you get up and walk and noticed that helped?  I never know what to do during an attack to make it stop since the nitro doesnt help, so I get up and walk around but not sure if that is putting a harder demand on my heart or actually helping stop the attack. HOw long does your attack last? My last one was about 1 1/2 hour and very severe. 
  • cher42845
    cher42845 Sheri54949

    Posted

    I have confirmed Coronary Artery Spasm(CAS  also know as Prinzmetal, variant angina) at Mayo with heart cath with intracoronary acetylcholine. I reporduced multiple vessels one one of the caths no EKG changes at all but the flow deviations was apparent. First see if you can determine your triggers. Some that are often triggers are chocolate, coffee, cold, hypoxia, hypertension, hypotension. Tachycardia & bradycardia. I also trigger with Dicyclomine,  Nebivolol(Bystolic), Methacholine,ergonivine.  When I have an attack they have me break a capsule of Nifedipine under my tongue, do 3 nitel sprays if keeps coming back then follw with another Nifedipine if BP over 100. If that does not work I have to go to Emergency for Nitro drip. Riht now I have sever hypoxia so I fight stayiing outof ER all day & Night it is 1:49 am my time & am sitting her taking the meds for it. I haave treachoBonchoplasy 22nd to correct the hypoxia. Then we wil try to get me back off this horrible routine of meds I am on.

    Here is my med regime trying to get me to the 22nd to saty or of ER

     

    6 am Imdur 120,  Nicardipine 60, omeprazole, L-arginine

    before I get out of bed Nitro spray & isosorbide dinitrate 20 

    10 am  Verapamil , Diltiaziam 120, POTASSIUM , pyridoxine, multivitamin, magnesium, Prednisone

    2 pm  niCARdipine 60, Imdur 30 L-arginine (if BP running lower 50 Nacradipine instead of 60) 

    10 pm isosorbide dinitrate 40,, niCARdipine 50

    The meds are all aimed at stopping the Spasm or slowingmy heart down because I have Tachycardia as well. Now I am the only patient they have had to throw all these at. At 41 Cardizem (diltiazem) held me for years. Then I started having issues 2010 and they switched me to Verapimil. that worked until 2012 when thye hypoxia & tachycardia took off. MY EKG when no spams is 100% normal. During spasms I no loner get high ST sue to be on all the meds. They see ST invert then swithc back, ST flatten,it will indicate variious past MI's, heat blocks of variosu kinds etc. all thes eare indicative of Ischemia. Does your nitro lessen the pain at all? Mine the pain goes down soem then wil come back up. At tiems I have beeen in ICU up to 1 week on NIRO drip at 65 to keep me pain free until it calmed down enough to take me off the drip. As the spams saty spasming the worse the endothelial dysfunction gets. Yhe L-argien is an over the counter supplement that can help the endothelial dysfunction which is what causes the Spasms.  

     

    • cher42845
      cher42845

      Posted

      Also wwatch out for vitamins with things that speed you up like Gingsen, caffine, other herbs. Many will set it off. 
    • cher42845
      cher42845

      Posted

      And nitro you have to be off it 8 hours a note or your becoem resitant which of course I am in danger of becomeing with this regime. The necxt step if the surgery does nto get rid of the majority of attacks we will go to EECP. 

      Enhanced external counterpulsation (EECP) alleviates cardiac symptoms by enhancing coronary collateral circulation—alternate pathways by which blood can blood can reach the heart muscle. The procedure is performed in a series of outpatient treatments, in which inflatable cuffs wrapped around the legs inflate and deflate in rhythm with the patient’s heartbeat.

      More than 100 published studies show that EECP can effectively relieve symptoms of heart failure, increase exercise tolerance, reduce reliance on medication, and improve quality of life.   Sicne I have recently been disabled due to the issues we are going thru all the thigns that can help me. 

    • samuels
      samuels cher42845

      Posted

      I'm waiting on the new drug the Cardiologists are calling the "wonder drug" it's available in the USA but it is very expensive, $2200 USD and depending on the individual and their need for this drug it could cost up to $20,000 USD annually, it is designed for cholesterol, in particular, familial conditions, I have read a brief description on this new drug and it is also believed to have very strong effects of controlling unstable angina, the drugs name is PCS K9, we are just awaiting it for our therapeutic goods board to approve it here.

      I've become tolerant to the spray regardless of how long it's in my system, In one severe attack I can have 18 sprays before I call for an ambulance, it is only just still working with each spray but only lasting a minute  at a time by then, with 18 sprays my blood pressure still sits around the 160/90. I have read in writings by different cardiologists and in their own opinions GTN spray usually won't stop a prinzmetl angina attack and same for the long acting nitrates as our bodies build up an immunity to them because it's pretty well in our system all the time in either tablet form or spray, cardiologists opinions vary on this scenario. they say the calcium channel blockers seem to work the best (Diltiazem, Cardizem, etc etc) some old school cardio's say the beta blockers work just as well if not better than   calcium channel blockers, depending on  what else is wrong with the heart.

      I've just had a review and they tell me there's nothing more to offer other than increasing a pill and a possibility of being put on a beta blocker, my cardiologist did want me to have a treatment called , now don't quote me on this but it sounded like he said " dorsal fin stimulation" from our hospitals pain management clinic, the pain management clinic got in touch with me to see what I wanted to do as our public hospital doesn't perform this procedure due to it's high cost, $30,000 AUD, and since I don't have private health insurance that treatment was debunked, how ever my old school cardio said it probably wouldn't of helped anyrate, there was also talk about tennes treatment (stimulation to relieve pain) I was reading the other day that even this kind of treatment is questionable in any kind of pain management and they believed it held no therapeutic value.

    • samuels
      samuels cher42845

      Posted

      Hi cher,the test that you had is the very test I asked my cardiolgist(s) about and they all informed me that it is not performed here due to it being so dangerous and a higher mortality rate than a confirmed diagnosis rate, I aske my old school cardiologist last week about this test and he said the same thing, he said that when he was in France they performed the test you had and he witnessed a nice big strong coronary artery just go flat and disappear,they couldn't locate it anywhere, he didn't tell me if the patient survived or not as they had to put heaps of GTN into them and he said that doesn't always work either, I mentioned that the USA still perform this test and he just looked and smiled at me and said look at their population compared to ours smile, I don't mean that in a nasty way and I'm sure he didn't either, he said it's just a matter of being lucky or not in this procedure. they absolutely refuse to do this procedure here.

      However you did use a phrase that my old school cardiologist said he was going toperform when he does the next angiogram, they are going to see if my blockage has gotten any better or worsened, but he said that he is going to do the reverse of this procedure that you had done, that's why I said a phrase that you used rang a bell with me.....measure the flow to see if there is any flow deviations and do a flow pressure via angiogram.

    • cher42845
      cher42845 samuels

      Posted

      I have a spinal Cord Stimulator to help the blood flow  but lately with the hypoxia I am worse. I also have tried tens on the chest did not help.  I just woke my husband and think I best head for hospital yet again. This is so getting old. ALL BETAblcokcer even Byostolic make me much worse. I think I was on  PCS K9 in a MAYO trial.
    • samuels
      samuels cher42845

      Posted

      Also if he's not adding a provocative agent in whilst doing the angiogram I personally can't see how his method of testing is accurate, I may not spasm while being catherterized, so how could he make a confirmed diagnosis in his way of testing ? , remembering that he's not using a provocative agent just measuring and looking for flow deviation and checking pressure as well.
    • samuels
      samuels cher42845

      Posted

      Yes it's only just been released PCS K9 in the USA, you having troubles too are you, I'm just waiting to see how bad mine gets, I don't want to go in to emergency tonight as it's friday night here and it's the drunks, brawlers and druggies night...not a pretty sight in emergency, I'll wait mine out for another couple of hours I think sad

      I'm like you this is so getting old....

    • Sheri54949
      Sheri54949 cher42845

      Posted

      Cheryl when you had the cardio cath did you say that  it showed flow deviations but no EKG change??? If what I have been reading from numerous people and research it sounds like the only way for sure to confirm Prinzmetal is if there is a spasm during a cardio cath.  
    • Sheri54949
      Sheri54949 samuels

      Posted

      I agree with you Samuels, doing a cardio cath doesnt confirm or rule out prinzmetal unless you would be having a spasm at that time. These doctors keep saying how rare Prinzmetal is but after reading from so many people on this site it sounds like its not that rare to have it but its rare for a doctor to confirm it unless they have a cardio cath showing a spasm at the time. Why dont they listen to the patient and go by their symptoms especially when its so obvious. 
    • andrew22534
      andrew22534 Sheri54949

      Posted

      Indeed true, but i have been lucky and mine confirmed on the basis of it walks like a duck it talks like a duck it has a bill like a duck, it swims like a duck (symptoms) its too dangerous to look and see if it has webbed feet....... he says that in his view and that view is generally held... it is too dangersous to provoke spasms and should be done, as spasms are not well controlled by nitrate treatment and so a spasm could last and or esclaate....
    • samuels
      samuels andrew22534

      Posted

      Hi Andrew, Exactly what one of my cardiologist said to me smile
    • samuels
      samuels andrew22534

      Posted

      The provokative testing method is considered far to dangerous "apparently" here, the mortality rate  also "apparently" is higher than actually having it diagnosed in this fashion.
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