AND NOW I AM SCARED!!

I have Prinzmetal Angina quite badly (diagnosed Mrch 2012). I am on Diltiazim, Nicorandil, Nitro patches and spray as well as a host of herbal medicines such as L'Arginine andL'Carnitine. I have been taking a lot of nitrolingual spray recently due to it being cold and my chest pain being a lot worse. I don't know what else to do as I am on almost the maximim dose of all my tablets and fall back on the nitro spray many times a day to help me sleep...and just generally survive the day. My pharmacist just commented about how concerned he is at the amount of nitrates I am taking and explained the problems with 24/7 useage. I am seeing my cardiologist next week so know what I have to ask him but feel he is not very proactive. I think I need a second opinion Cardiologist wise anyway. I am just REALLY SCARED at what to do now. I don't know what else I could take that I am not already taking and it is still not working. What would happen if i became resistant to nitrates too???? That scares me so much. Does anyone have any suggestions??

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16 replies. Join the discussion

1.-IF you are allergic to sulfur, the Diliazam has a sulfur molecule in it. That could make you "worse" and be causing the symptoms.

2.-You could be misdiagnosed.

3.- Next week could be too late. Call your doctor and let him know what is going on with you NOW.

4.- Trust your "gut". You "think" you need another opinion means you do not trust your health care now, as well you should NOT, as you are worse NOT better.

5.- Be proactive. Take charge. This is YOUR life, not someone else's

6.- Perhaps one of the meds you are on besides the Diliazam is causing you a problem.

7.- Herbal remedies, well you might be allergic to some and they themselves can be causing the heart spasms.

8.- Maybe it is not something new "to take" that you need to look at, but what you are eating and already taking.

9.- Chemicals in foods and mostly in soft drinks are sometimes the causes of spasms. If you are drinking soft drinks, stop. You might find an answer there.

10. There is a heart spasm group and a Prinzmetals group at yahoo.

Good luck. Hope some of this helps.

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Perhaps you need to adjust the timing of long lasting nitro and nitro patch. When you have the nitro in your system for 24 hours per day, it ceases to work for you. Your body adjusts to it and you keep needing more. Maybe you can adjust the time of day you take it/wear the patch. Talk to your doctor about the schedule of nitro. Joyce

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Well, what amount of nitro do you take in a given day? For my microvasculature to stay open and relax my vessels, I am on .8mg hourly dermal patch and take the spray or sublinguals(SLs) at will. My cardio thought this was crazy and that I took more than he had seen in all his years. Yet I knew women who even needed more. We are different with PA or MVD! Very!

This has meant on some occasions, I have taken from 10 to as much as 25 .4 SLs in a day along with the patch... that would be quite a lot in a 12 hour period for someone without my deficiency! AND may I add... no passing out or low BP. If I do NOT take it I drop my BP because my body needs it and eats it up to work better. I used to worry about tolerance but not any longer. I think we simply are all very different in our deficiency of natural nitric oxide to help our vessels open.

I must say i have mostly found this coincided with trying to have a normal day which was already trying to warn me early my vessels were "pesky" but I plodded on INSISTing i would be ok the more nitro I took. It really is often how we choose to limit exertion that helps us stave off more and more nitro. We need to stop and address the episodes promptly. OR you need more of a long release form so you do not have as much breakthrough pain or need, would be my take on it from what I have experienced so far. I hope more strictly PA patients chime in! I have some spasms along with my MVD.

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Thanks a lot for all your thoughts!!

I am on a 10mg patch and take a minimum of 10 sprays of nitro a day (it is not always exercise related and often I could take more sat down in the evening than on a run). I have my patch on at night becauSe that is when the spasms and pain are worse and they kept me awake. I have found night sedation knocks me out enough so I don't notice the spasms so much unless they are really bad and it is the only way I get sleep. I could put the patch on in the day instead but I do think I would have to up the dose of night sedation and it scares me being so knocked out in case I really am in trouble!!

I am thinking that it may be the cold weather we are having that is making me bad at the moment and also many people living near us have wood burning fires. Smoke and cold and not good for Prinzmentals.

I am looking up a second opinion of Cardiologist right now!!

Strangely I feel better today having done some exercise.

I am not sure if I just get desperate and emotional the days I am sat at home. When I get out and feel I am alive again the world seems a better place.

This condition is like being on a rollercoaster. Thank goodness for this website!!!


THANKS LADIES!!!!

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The cold does aggravate coronary artery spasm. Avoid outdoor exercise or exertion as much as possible. I've heard some say covering their mouth with a scarf helps when out in the cold. I was in a position similar to yours where my cardiologist kept saying I was on "maximal medical management" yet I was having frequent and persistent angina. At first I took that to mean we couldn't go up any more on meds. But I found if I kept going back he would try something different. Finally we both agreed it was time for a second opinion. The plan started by that doctor has been more effective and I am now on twice as much diltiazem as I was on and off of some other meds. When I've been taking 10 sprays a day or more, I needed med adjustment.

It is also possible you are pushing yourself too hard. This is not a condition you can power through. I often had bad days with aching chest after overexertion the day before. It takes a long time to really learn what your body needs you to do. Hang in there and ask about med adjustment and if necessary second opinion.

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I have found that I will go through some months with controlled spasms with very little sublingual nitro needed then I will hit a cluster where I will have no energy, popping nitro like crazy and then finally calling my cardio for the nitro drip. I have had this PA since Dec. 2010 and I'm just now getting to the point where I can listen to my body and know what it needs. Nitro, nap, or the nitro drip. I was on the nitro drip for 48 hours the first of June and I was pretty well symptom free (with all my meds) for 4 weeks then the breakthrough chest pain came back but not near as bad as before the drip. My cardio says that I will need the drip at least twice a year for when the spasms get so bad that they feel like contractions.. I don't dread these trips to the hospital anymore because being on the drip is so wonderful. It completely takes away the spasms. As Prinzy says, dilitizem has the sulpha molecule in it and I can't take it because I'm allergic to sulpha. Found that out the hard way. Went to the cardio in April telling him I'm feeling worse and please do something, change my meds or do something!! So he changed it to Dilitizem and for two weeks I felt great , had lots of energy and then hit rock bottom. Could barely stand up, blood pressure way low and heartrate was in the 40s. So back to the old calcium channel blocker , amolodopine.
I'm also like Yarnkitty, because if I do too much one day then I will feel rotten the next. And the funny part is that the day you are overdoing it, you feel almost normal and you want to get as much done as possible , then BAM the next day you pay for it. Really is a very hard medical condition to figure out and I wish you luck in doing so. Everyone is so different in how they respond to treatment.

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PA and going to the ER and being treated like you are faking it or just having an anxiety attack.......
That's the hard part for me. Hospitals vary, ER nurses vary, some take you seriously, some just want you out like a drug seeker.
PA is scary.....I did have an MI in April.....been back to the ER a few times since......

Has anyone ever been treated like this? Thanks Sisters.

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You should NEVER be treated like this. I can honestly say that I have not ever been treated like that.

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These non-obstructive heart diseases need to be understood more fully in the ER scene. Many of us with spasms and microvascular issues are treated dismissively and that can be dangerous. Some are even stripped of their nitro they have at hand once in ER which is a big no-no for MVD! The symptoms for us can appear later after acute stress and emotional exertion. AND with MVD... the ischemia is at such a micro level it may not show on the EKG at all. You may get lucky and have them catch a spasm but you may not and even then when they see them quickly resolve, they assume we are just a nuisance disorder. Thing is they can build on one another and create a constriction from down deep all the way up to the LAD and in between. Scary.

I hope more education on this gets around and is discussed with interns and fellows now so it continues progress into mainstream thinking, instead of them releasing us with no thought what so ever. I still do not get what the harm of them trying nitro is... if it works, it is a sign for sure. Especially if we intake more than usual and it makes us ambulatory NOT pass out or bottom BP. It is a half life med and little harm if monitored. I wonder if a brief stay in hospital to tweak this would not in the long run be less economic stress for all the ER visits and time wasted trying to figure it out and risk a HA due to improper treatment.

All of us keep discussing these aspects and it does matter!!! My fav new saying is an African one-
"If you think you are too small to make a difference, spend the night with a mosquito!"

Here's to working for better awareness and care of the less understood heart disorders.

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I've been generally treated well in the ER. One thing that frustrates me is having to have an internal med doctor and have them want to stick you in the box with all the CAD patients and follow their protocol. The biggest money waster is the repeated stress tests. I think those are worthless. They never catch anything interesting for me other than my general lack of exercise tolerance and then the chest pain hits me later.

Last time I was in the hospital, I lied about having any meds because I sure as hell was not going to be dependent on waiting for a nurse to get me nitro if I needed it. As a nurse, I know it is preferable for the hospital to administer all meds so they know exactly what you've had and have a record, but for my own self preservation I want my own nitro. Last time the resident forgot to order the ambien he said I could have and ordered no narcotic pain meds. In the midst of CP is not when I want to be begging the nurse to call the doc for pain med orders. It's the first time I had ever been in the hospital without pain meds ordered.

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Oh, I think every doctor and nurse should be educated on this. The last time I was in the hospital I'm the one that had to educate the nurses about my condition when a shift change happened. Then one nurse kept titrating down my nitro drip because my heart beat would be in the 40's. My cardio finally came in and told her to leave it at 20 mg and just to watch the top number of my blood pressure. I don't think I would have been in for 48 hours if she hadn't of kept taking the nitro down.
Gayle63, before I was diagnosed I landed in the ER 4 times and each time by the time I got there my blood pressure would be fine, heartrate fine EKG fine etc...So , of course I was treated like an anxiety ridden woman!! Took 4 months to get properly diagnosed and on the right meds. Now all I have to do is call my cardio and he direct admits me for a drip. I've been so fortunate to have found one that really gets this!! Hoping all the PA and MVD women find someone like him. Hopefully he will never move!!
Yarnkitty, I take all my meds with me and the nurse watches me take them and writes it down. Saves on having the hospital pharmacy charging me an arm and a leg for meds.
Artista, love the quote, as you probably know I was a teacher so I'm finding it very hard right now. This is the first time in 27 years that I've not got my classroom ready for the new year. Bittersweet feelings for sure but I know my heart can't take it anymore. I have tutored one sixteen year old boy that was having trouble reading this summer and it has made a world of difference. I think he is finally caught up to his peers. That was better for me than going to a therapist!! At least I touched one life. Maybe I can do just one at a time.

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Thank you so much for all the positive comments. EVERY COMMENT MADE BY YOU GUYS has made such a difference to my life. May we all stick together and continue to help those unfortunate ladies continuing to be afflicted with the same infuriating condition as ourselves. Not only have we had to battle to be recognised but we have had to find things out for ourselves and then educate the educators!! It is frustrating and depressing at times. Knowing I am not alone in this and not going round the twist has actually stopped me going round the twist!!

THANK YOU FOR THAT YOU HAVE DONE AND WILL CONTNUE TO DO!!!!

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My NEXT hospital stay will make a liar out of me. Last time they took my nitro away and said if I needed help because of spasms to yell......well you might know how well that worked. I did and I yelled and no one came and I yelled.....and after my stay wrote a letter as to the insanity of that and by luck I survived, because finally someone came and then ran and got my nitro. Next time I will hide a few bottles of the spray in my bags.

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Being allergic to sulfur in the Ditilazem I hope you are aware of the sulfur in foods and drinks including sodas??????? Acesulfamane Potassium or "K", is deadly for me, brings on heart spasms. Also sulfites are dangerous, as they pile up in the system and cause me spasms. This crap is laced through out much of our foods.

You better check out Rick Williams website and get educated......about the sulfur causing spasms. There are a couple web groups and one is heart spasms and ....just type in heart spasms to yahoo groups search, you should find them, and then a prinzmetals group also..... plus a sulfitesnomore group....

This could END your problems and get your PMA under control if this is your cause of it.

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prinzy... I am allergic to sulfa too. Thanks for the heads up on that. I already have a careful diet but constantly re-tweak it when I gain more info that may help. Much appreciated. I do not know that I really paid attention to identifying it in my food. (though most of what I eat is not processed) I will be on the look out. :)

busymumof three... I do hope being here keeps you sane. I know it has really helped me too from thinking I was going off the deep end. I guess misery does love company but so do we also love to hear what works and about the good days! Hope this levels out for you.
- annette

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I am allergic to sulfa drugs, and also sulfur, plus I have reactions to sulfites. Best to get educated on these chemicals as best you can and avoid them. You might be causing the spasms by eating things you are actually allergic to. Found out that I sure was.

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