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Need help from my Prinzmetal's Sisters

ruekat
0 Recommendations

Hi ladies,

I need your help more than ever! I'm so confused. To recap, I have what I believe to be Prinzmetal's (never documented of course) but the symptoms are right up there.

I also have a condition called dysautonomia which leaves my h/r pumping away and my b/p is very labile hypertensive. Going up the steps brings it to 190/88 then two minutes later it's 145/79 and it jumps from there.

I was on metoprolol for the dsyautonomia and it seemed to keep things in check but I noticed more spasms.

I tried a calcium channel blocker (cardizem cd 120) but hated the way it made me feel. I did have a clean cath back in April but everyone in my family has passed from CAD, including my younger brother this summer at the age of 48. He just died while riding a train.

Ok, game plan. One dr says try Altace to lower b/p but won't do anything for heart rate. Another says cozaar. I felt the best while on a beta and my family dr just called and suggested the beta with a small dose of Norvasc. Frankly, I'm scared. I do have nitro on hand as a back up.

I don't want to wind up like everyone else in my family. i'm thin don't smoke (although the people on both sides of my townhouse do - yuck!).

So, can someone shed some light on this combo? Side effects? I have reactions to everything. I'm pretty small about 5'0" and weight about 90 lbs.

I'm to take 6.25 mg of metoprolol twice a day (yes baby dose!) and 2.5 of norvasc.

What should I be looking out for?

I also take a baby aspirin daily, fish oil, CO Q10, magnesium, vitamin C and was thinking of adding L-Arginine.

Thanks for any imput. I trust you more than drs!

Rene

Explore topics in this discussion:

Surgery Procardia Bypass surgery Inderal Verapamil Anxiety Beta blockers Cardizem CD Muscle cramps Angina Altace Stent Norvasc Toprol XL Heart disease Compazine Cardizem Lisinipril Aspirin Lisinopril Amlodopine Imdur Seizures Diltiazem Cardiomyopathy Pain Metoprolol Diltiazem ER Cozaar Heart attack Dysautonomia

16 replies

gracie62

Rene:
I was told some time ago by my family doctor that Metoprolol can make coronary artery spasms worse and even cause them in some instances. He took me off of it and put me on Lisinopril, an ace inhibitor. I remained on Diltiazem, my CCB, for spasms. I noticed a significant decrease in my spasms. Then my new cardiologist told me he wanted me back on the Metoprolol. A few months later I ended up with triple bypass surgery due to CAD. They increased my Metoprolol when I was released from the hospital. Then I had a heart attack 18 days later caused by a combination of a blood clot and a coronary artery spasm in one of my new bypasses. The cardiologist doing the cath during my MI was from the same group as the one who increased my Metoprolol. He took me off of it immediately and told me that it DOES worsen coronary artery spasms.

So, after being told "Yes it makes them worse" and "No it doesn't affect them" and then "Yes it makes them worse and probably caused the one during your MI", I made the choice to avoid this drug at all costs. I am back on Lisinopril, had my CCB increased. That combo has given me good control for some time now.

I used Norvasc for a few months but did not respond to it. That is when they switched me to Diltiazem. I have asked pharmacists and doctors a like about Metoprolol and spasms and always get a different answer. For me, I will never take it again because I know it makes my spasms worse. It took trying several different CCBs before I got the right one in the right dosage that has given me good control.

I have heard many ladies have more spasms on beta blockers than ace inhibitors. Don't know if I helped you much. Just sharing my experience to consider in your research. Hope you find what works for you soon.

Dianna

Yatchzee

I might try the Cozaar first. The beta blocker taken with a CCB is usually not recommended but with the doctor suggesting it??? Surely a cardiologist must know that. I think if you have the nitro for the spasms that the beta blocker might cause, then maybe you could try taking them together and see. You are the guinea pig.
Joyce

Hise

Rene:
I don't know about the combo they're are putting you on, but I have a question to the CCB:

When you say, you hate the way the calcium channel blocker made you feel, what do you mean? Headache, tired, swollen legs or ...? I was put on Amlodipin (CCB) in January, and the first 6 weeks I was deadtired, was freezing and later got terrible itching when it got warm in May. But it did take my chestpain. I stopped taking the Amlodipin in June because of the itching - the other side effects stopped after 6 weeks - but have begun taking them again this month after several attacks of pain. And this time with no side effects. So maybe it is a matter of enduring the first month of side effects ... unless you've already tried that ...

Hope you get the right medication soon.
Henriette

ruekat

Hi ladies,

Thanks for your replies. The reason behind the beta I think is to stop the tachycardia and to level out my palps and the fluctuations in my heart rate.

I'm so frustrated. I've seen 4 cardios and all say that the betas can't cause spasms. And they're not even sure that I have them.

Well, last night, on nothing, I had a major one. IT can't be all in my head.

Funny, all the drs are male!

When I tried the CCB before they made my heart race.

So, now i wonder how I control all the symptoms and start living my life?

I have the Altace in the house which is an ACE and Norvasc and Cardizem CD. When I took the Cardizem I had extreme anxiety to boot.

I need something to control b/p, h/r and spasms.

Why can't these drs agree and figure it out? We have to play drs ourselves

So frustrating.

Also I'm just scared due to my horrible family history with CAD and MIs.

I just want to be back to where I was a year ago 90/60 heart rate between 60-65.

It's just so complicated with the dysautonomia.

Thanks for all your info!

Rene

ruekat

Oh one more thing - Anyone on Altace? What if it is taken alone? Can it increase the spasms or is it neutral?

And I guess it would do nothing other than to lower b/p but not lower heart rate?

Thanks again.

Rene

Tersa

Hi Rene,

Wow, you have really been through things with your medications. NO wonder you are confused and unsure of what to do.

I have to tell you that I have angina my Cardio thinks is coronary spasms, and I have taken a beta blocker Toprol since my stent in April 08, and he has never mentioned the Toprol causing spasms- really weird. I have also been put on a CCB Norvasc and a long acting Nitro- Imdur- which seems to be a good cocktail for my spasms as the trio has worked well controlling my symptoms. I have been studied with an angiogram and my arteries looked ok a year ago, but am still plagued with the darn chest pain. I still take Nitro about once a week, but am basically controlled on the above combo of meds. You might want to ask about a long acting Nitro like Imdur.

Keep asking questions and I certainly will be asking my Cardio about the BB's causing spasm at my next appointment. Hang in there and good luck with all this medication stuff going on.

Terri

Yatchzee

Altace is a an ace inhibitor that lowers blood pressure and is just fine to take with beta blockers or calcium channel blockers. I take lisinipril, an ace inhibitor, with Norvasc. Joyce

ruekat

Joyce,

Did you have any problems with the lisinopril? I'm allergic to everything and I know that rampril (altace) is in the same family and could cause swelling and throat closing. I'm worried because I've had two bouts of anaphalaxis on compazine and contrast dye.

The one dr. said if I were to take the Altace, to have someone with me. Easier said than done I live alone and am new to this community so I'm caught between a rock and a hardplace. I also don't drive which makes it hard for me to get around.

Never thought at 50 that I would need to find a babysitter for myself!

Frustrating to say the least.

And I don't understand why there isn't a standard protocol when it comes to Prinzmetal's.

Terri, I did ask about Imdur but my dysautonomic cardio said it wasn't right for me.

Now I hadn't had a spasm in over a month till last night. I don't know if it's because the weather here on the east coast has gotten very cold or because of the rapid fluctuations in b/p.

I'm beside myself with worry which isn't good either. So, I sit looking at medicine bottles and trying to figure out which is the best choice since my drs aren't being of any help.

Like I said, I get more info from you guys than the medical field. Sad commentary on today's medical care.

Rene

myra

Good morning Ladies,

I too have had coronary artery spasms since 1996. I have been to several cardios. during that time, with several meds including Norvasc and Inderal. I am now seeing a cardio. who I can really put my trust in. He has me on Diltiazem ER 240 mg., Imdur 60 mg.(increased from 30mg.) and he later had to add Ranexa 500 mg. I also take a baby aspirin. I take all four meds in the morning, when I first get up. So far, it is working very well. I hope this is some help to all you ladies.

Myra

MIsurvivorX4

I'm also a bona fide Prinzmetal's patient who has now suffered FIVE (5) heart attacks over the past 8 years as a direct result of Prinzmetals syndrome.

Yes, definitely, I agree there needs to be some sort of protocol for Prinzmetals, as we all know how difficult it is to treat, whether medically, interventionally, or surgically.

Obviously, I am on the extreme high end of seriousness as a Prinzmetals patient. I have found so many great websites for other different types heart conditions, but none specifically for Prinzmetals. I hope to start writing letters with regard to protocol, better recognition of, and urgency of more studies for Prinzmetals syndrome. Since I am a WH/Mayo Symposium graduate, I've spent a lot of time advocating for recognition of women and heart disease, but am beginning to feel like I need to carve some time out to focus on the Prinzmetals problems for women (and men).

Currently, I have a front row seat to a 3-ring circus of 3 cardiologists not agreeing on anything about my care with regard to medications, echocardiagram EF% reading, or results of angiogram. What makes it even more difficult for me is that they are top doctors that I like and respect. I understand that there will always be differing of opinions, but how about just a speck of common ground on something please? More serious things have happened so, I am now back to "scared" should I ever come through an ER again and admitted to the hospital, and what random decisions will be made by doctors.

BTW, with regard to beta-blockers ...

They definitely made my spasms much worse (as evidenced by my history of MI) and was taken off them several years ago. However, now I'm back on 50 mg metoprolol to help me out because of my diminished heart function. And yes, I am still dealing with spasm induced angina and trying to keep calm in order to make some decisions about what meds to take since doctors can't seem to decide.

MIsurvivorX5

Hise

Oh, oh, how you're all dealing with so severe symptoms, and - sorry, Rene, to hijack your thread - but does any of you know of a website/supportgroup for only Prinzmetal's angina? We have one in Denmark - www.prinzmetal.dk - but it would be great if there was an international one. A forum to discuss symptoms, treatments, and so on.
Being a one and a half year old PMA-diagnosed patient - on symptoms only - there are so many things I'm curious about. Of course, this site is wonderful, but it could be great if there was one for only this disease, especially because the docs are not all that informed about this supposedly rare condition.
Henriette

KJ3

Hi All,
Just wanted to add my comments on Toprol XL (metoprolol), Norvasc (amlodopine), and the like. I have diagnosed idiopathic cardiomyopathy, and take a high therapeutic dosage of Toprol (300 mg/day) along with Norvasc and several other meds prescribed to keep all of my numbers extremely low. All I can say is that it is the Toprol in combination with the other drugs in my medication regimen that is keeping me alive..... and, has even improved by EF and BP.
I'm thinking that perhaps I am the 'odd ball' here, but I have had virtually no negative side effects from Toprol or Norvasc, and in my case, they are proving to be 'miracle' drugs.
It troubles me to hear about all the ill effects that you, my heart sisters, are having. Should I be expecting something terrible to happen? I've been taking this combination of meds since 2003.

Karen

trigrandma

Hey Rene,
Juggling all these meds is something else. Re the ACE inhibitors, you can have an allergic reaction. I have taken it for years without problem for high BP. I too couldn't tolerate the CCB nearly fainted twice and have muscle cramps at nite. Good luck

Yatchzee

Rene,
I have had no reaction to Lisinipril and have taken 5 mg for about 7 years. I was first put on a diuretic for highish blood pressure back in 2004 and that is when I started having the shivering and shaking in my trunk. It turned out to be Prinzmetal, but I thought I was dehydrated or having a reaction to diuretic so doctor too me off it and put me on lisinipril. Turns out the shaking did not go away so then I thought I just was drinking too much coffee or not eating often enough.
According to my cardiologist, the standard protocol for Prinzmetal is CCB and long lasting nitro. This is complicated by your dysautonomia diagnosis. Joyce

MIsurvivorX4

Rene,

Sorry about hijacking your thread earlier. I don't know your financial or insurance situation, but is it possible for you to see a reputable cardiologist/interventionist who can give you a true diagnosis of Prinzmetal? Have you had an angiogram?

I see you live in PA, how far are you from Cleveland Clinic? Just knowing for sure can offer peace of mine and help with coping and recovery, appropriate meds, lifestyle changes, etc. I've also talked with counselor to help deal with the effects of Prinzmetals syndrome. Take care and I hope you find what can help you feel healthy.

tonyam

Hi Rene,

I too have Prinzmetal Angina (PA) as well as Hemiplegic Migraine (HM), high blood pressure, palpitations, seizures (migraine-induced), and Raynauds. I take Toprol XL 50mg (metoprolol) as well as Verapamil ER 180mg (ccb), Imdur 60mg, and nitro spray. My cardiologist has wanted me to get off of the Toprol because of the risk of it triggering spasms. But each time we've tried to lower it, it triggers a PA attack, palpitations, and then a HM attack along with my seizures.

So I think in cases where people have other health issues like arrythmias, palpitations, migraines, etc., the beta blocker does help, i.e. at least that's true for me. Everyone's medical and chemical make-up is different.

I'm amazed though that you're not on a ccb. Procardia worked well for my PA too. We switched to Verapamil for the HM and PA benefits.

Be well, Tonya

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