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Need Help And Don't Know Where To Turn


Rene S.
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I'm at my witt's end. I can't catch a break. Ever since my diagnosis almost a year ago, my b/p has been in disarray. Lately, however, it has been high. Going up the steps, I'm out of breath, my h/r is 125 and my b/p goes as high as 174/85. It does drop after sitting a bit, but not that much. I'm averaging around 145/75. Not good. I was doing the betas which kept my hr nice and calm and my b/p around 120/65. (my disastolyic is usually very low on betas and I'm talking 6.25 mg of metoprolol. Well, for the fast few months with more frequency, I've had what I believe to be prinzmetal's angina or variant spasms. At rest, like someone is squeezing my heart and spasms in my shoulder blades into my jaw. I have nitro on hand.

Last week, I wound up in the hospital for 2 days since my pressure was high. They put me on a calcium channel blocker, Cardizem CD. I took it for 2 days and hated it. My h/r was faster and I had palps not to mention another spasm. Ok, I admit I cheated the other day and took the beta blocker. I felt almost normal. Nice steady b/p and my heart rate was back down in the 70's. However that night, I had a spasm that was pretty intense and wound up taking the nitro.

Last night, with nothing on board, I had yet another spasm that was letting up. I think it's Michelle that said she went every time to the ER. So off I went last night. Nothing showed on EKG and I had to beg to have cardiac enzymes drawn. The ER dr said my case was too complicated (really???) and didn't want to give me anything for my high b/p. I was clutching my head it hurt so much. My b/p in the ER was 180/80 and he said that with those numbers I shouldn't be having symptoms. Easy for him to say. He offered Percocet which I turned down.

I was dismissed and told to follow up with primary care dr. Called today and they said it's a cardiac issue and that's who I should be seeing.

My only problem is that my original cardiologist won't see me because I won't take the advice of the quack dysautonomic dr.

Just got off the phone with the PA from the cardiologist. She says stay on the metoprolol that there's no contraindication for it being used with Prinzmetal's but everything I read says different. She said to take the Cardizem CD 120 mg with it if I want and that Prinzmetal's never causes heart attacks in people with normal coronary arteries. There is a website for women with Prinzmetal's and it says the exact opposite. I asked her about Norvasc and she said it's never used for Prinzmetal's and everything I've read said it's the top drug for it. I'm lost. Now where to turn and what to do?

The only decent thing she said was that I should have been kept last night or at least given something for the high b/p.

How I wished elsewhere at this point.

Thanks for any advice and for letting me vent.

Rene

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Rene, I just logged on to your post from the Mayo clinic and I am wondering where in PA you are. If you are near Philly, I would suggest my dr. DR. Maribel Hernandez who was able to get me out here to Mayo. She is a cardi dr. and she has really helped me. When I had a real "flare" this past spring, our local ER almost killed me (I think) any way. I finally got somewhere after I got to Lakenau hospital. It is over an hour from me but work the drive. When I need to go the the ER we drove there even though I felt like I was having a heart attack. If you can in any way get out to Mayo I cannot say enough about it. A team sees you (cadio, endo, and neuro)Best of luck to you

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Guest tearose

Wow, I too have had bouts of Prinzmetal angina...it swiftly knocked me to my knees!!! I actually looked towards the sky and said "God, please don't take me yet".

I don't know how you manage the NITRO?

One doctor said to me don't take it, you will pass out, another said okay to take as long as I lay on the floor, and gently take a dab of it while calling 911. Fortunately I have not triggered any attacks. I have learned that my most predictable triggers are going from extremes in temperature.

I hope I never need to use the Nitro but please tell me what you felt!

best regards,

tearose

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I wish I had more specifics. Knock on wood, things have been relatively quiet recently on the chest pain front. For the me the first thing is treating the dysautonomia aggressively. the swings in hr and bp are a big trigger for me. Getting up in the middle of the night is a trigger for me, so I wear compression to bed. and have to transition in and out of bed very gradually. The norvasc has been okay, but I'm on a TINY dose. I couldn't tolerate 5mgs, only 2.5. It doesn't aggravate my heart rate at all. At 2.5, all I notice is a little swelling in my hands and feet, but it did take me about a week to get used to it. I didn't feel so good initially. I believe it has one of the better side effect profiles of the calcium channel blockers. You do need to find a cardiologist who will listen to you and work with you-- who gets the dysautonomia and the possibility of spasm. Once I found her, she told me to call if I ever wondered whether to go to the ER. She also wrote a letter to take with me to the ER, advising them what to do, and giving legitimacy to my being there. We more or less decided since I haven't sustained damage from previous episodes, I don't need to go in if a give episode is no worse than previous ones. If it goes on and on or is much worse, I do need to go in. Nitro does not help me-- does it help you?

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Wow, I too have had bouts of Prinzmetal angina...it swiftly knocked me to my knees!!! I actually looked towards the sky and said "God, please don't take me yet".

I don't know how you manage the NITRO?

One doctor said to me don't take it, you will pass out, another said okay to take as long as I lay on the floor, and gently take a dab of it while calling 911. Fortunately I have not triggered any attacks. I have learned that my most predictable triggers are going from extremes in temperature.

I hope I never need to use the Nitro but please tell me what you felt!

best regards,

tearose

Hi Tearose,

yes, they are horrible aren't they? Nitro I take is a very small amt. Your heart rate speeds up a bit and it can lower your pressure, but the other night I took one and it actually increased my pressure maybe because I was terrified since I was alone! I do believe this all started when I moved into my townhouse. My next door neighbor smokes, and I can smell it right through my bedroom wall and the whole house. And cigarette smoke is known to be a trigger. Never had this before. Grrr.

What do you take for the spasms?

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Angela, thank you so much for validating what I was feeling on the Cardizem. Increased h/r and palps. The PA said there is no way that it could be a side effect. Wanna bet?

What do you take now?

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I wish I had more specifics. Knock on wood, things have been relatively quiet recently on the chest pain front. For the me the first thing is treating the dysautonomia aggressively. the swings in hr and bp are a big trigger for me. Getting up in the middle of the night is a trigger for me, so I wear compression to bed. and have to transition in and out of bed very gradually. The norvasc has been okay, but I'm on a TINY dose. I couldn't tolerate 5mgs, only 2.5. It doesn't aggravate my heart rate at all. At 2.5, all I notice is a little swelling in my hands and feet, but it did take me about a week to get used to it. I didn't feel so good initially. I believe it has one of the better side effect profiles of the calcium channel blockers. You do need to find a cardiologist who will listen to you and work with you-- who gets the dysautonomia and the possibility of spasm. Once I found her, she told me to call if I ever wondered whether to go to the ER. She also wrote a letter to take with me to the ER, advising them what to do, and giving legitimacy to my being there. We more or less decided since I haven't sustained damage from previous episodes, I don't need to go in if a give episode is no worse than previous ones. If it goes on and on or is much worse, I do need to go in. Nitro does not help me-- does it help you?

Hi Michelle,

I just spoke to the dysautonomic sp. who said Norvasc would be ok. He's ordering 2.5 What were some of your side effects besides the swelling? I was told I could take it with a beta blocker since Norvasc does nothing to decrease hr and mine lately has been so high. They look at me like I have two heads in the ER. They know nothing about Prinzmetal's and probably think I'm looney tune. I think the answer is to find a female cardio!

Nitro sometimes helps and others I tried to force myself to go sleep and pray that I get up!

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The doctor had me take it before bed, so that the peak efffect would be when I need it most and its bp-lowering effect would be when I was lying down. I did feel woozy at first. but the cardio encouraged me to see if I could get used to it, and I did.

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Angela, thank you so much for validating what I was feeling on the Cardizem. Increased h/r and palps. The PA said there is no way that it could be a side effect. Wanna bet?

What do you take now?

I take a teeny dose of Toprol XL. Seriously, 12.5 mg daily. It does much better than the cardizem! I have some other Toprol I can take in addition to that is not long acting for if/when I have "breakthrough" tachycardia. Haven't tried it yet, but hopeful it will work. My PCP just came up with that plan.

Angela

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Angela,

That's about what I was taking of the metoprolol 6.25 mg once or twice a day. And you didn't have break through spasms.

Thanks!

Rene

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