Prinzmetal's syndrome Member Introductions

Prinzmetal's syndrome
#41

Debbie, I had a million questions when i was first diagnosed, don’t worry about that! I also wanted to tell you there’s another great support site called WomenHeart, they have a board you can post on, and there are several other women there with PA. For the nitro, 3, one every 5 minutes, if you have to take the 3rd, you best be dialing 911 with it as well. I’ve taken 2 at a time with really bad attacks. The biggest trick is to get the spasm to stop. I’m so glad your doc put you on a CCB, it took about a week and ahalf for it to work for me, but I had to put the nitrate back in, I was taking 120mg, then cut back to 60mg when the spasms got under control. The nitrate headache took about a week to go away on the long acting, but if you can’t tolerate, it then you can’t. Maybe talk to him about starting with the lowest possible dose if the CCB alone isn’t doing the trick. I haven’t heard anything about vitamin E, but intersting theory, make sure you check with him before you take ANYTHING though.

One thing I’ll warn you about is winter. Cold is a bad thing for us, for some reason it can trigger the spasms, so just be prepared, that’s sort of the key with all of this, looking at life a little differently, and being prepared for things you never had to think about. It helps us learn to live with this stupid thing.

I promise you’ll get a handle on this, I know I felt like I was completely falling apart in March when I was diagnosed finally after my MI in January, I was afraid to sleep because I was afraid i wouldn’t wake up, i was afraid to leave my house because what if I had a heart attack driving, or in the store, or at my kid’s school, afraid of everything including my own shadow. Today it’s always with me, in the back of my mind, I’m alert for it, but a friend of mine always says “I have heart disease, it does not have me,” and I try to keep that in mind when I start to let it get the upper hand.
Hugs,
Kristen

#42

PS - I have heard of others who have attacks during the day, mine were at night or early am until I started the long acting nitrate, then they switched to day time, oh joy! K

#43

When I was at the lowest point I had my attacks around the clock, now when I am slowly coming back to life again I have them when I push myself too hard while having anemia…

Last time I had an attack was in November I think… I had some small ones that I stopped in time… just the creepy feeling, you know that comes right before the attack, but no pain or so… But, without medication I can’t make it more than 36 hours before getting a bad attack!

Love from Angela

#44

I’m not sure if what I have is attacks, It’s a heaviness with pain that radiates across my chest. It usually last about five minutes, but somedays I have it several times a day. It has always gone away by itself, I haven’t used the nitro for it yet. When I had my heart attack it started as what I thought was a crick in my neck. I even asked my daughter if she’d rub it for me. She suggested I get a warm shower first to losen it up, and then she was going to massage it. While in the shower it moved to my jaw and arm, and by the time I got dry it was in my chest. I don’t remember having this heavy pain across my chest that day, so I wonder what it is? The doctor told me to take the nitro if I had an attack, I’m just not sure if that is what this is. It certainly doesn’t hurt as much as the heart attack, but is this the prelim for it? Ladies bless you both for taking so much of your time with me…I hope somewhere down the line I can such a blessing to someone else.

#45

You will be a blessing to someone else, I promise that! Angela was one for me, she held my hand through the worst days, for that she will always hold a special place in my heart.

The attacks don’t have to feel like heart attacks. Some people have mild ones, some more severe. Lucky me, mine tend to be severe. A is right, there’s this creepy feeling before one, sort of an “oh my God” moment when you realize it’s coming, and sometimes it doesn’t come. It completely depends on what arteries are constricting and how badly to determine the degree of pain and where it is. Every is a little different. I know you dion’t like the nitro headache, but next time you feel it, sit, relax, and take a nitro, so if it helps it go away.

I know it’s easy to doubt yourself after one, and to second guess what it was you were feeling, but don’t. Try to find a place of aceptance, they why’s and other questions will just bog you down. I forgot, did they do an angio on you to see if you had any blockages?
I’ll be thinking of you!
Hugs,
K

#46

yes, there were no blockages, and my heart suffered very little damage. I know I sound like a baby regarding the nitro, but I seriously coundn’t function Saturday…it took me three hours to get groceries, because I couldn’t think clearly. That was the long acting nitro, and I will try the small pills they give me next time I feel the chest pain. They may no bother me as bad. I already have problems with migraines, so to take something I know will cause a headache is new to me.

#47

The migraines may be part of the PA, that and Raynaud’s (sp)
is common. I meant the nitro-quick when you have an attack, don’t take the long acting for an attack, it takes too long to work. It’s a really small doseage, but may still give you a headache, if it does, I know poeple who can do the patch or the spray without headaches.

I’m glad no blockages, I don’t either. Hope you have a great day, with no attacks and some peace of mind!
Hugs,
K

#48

dczachary, do you live in OKC? I use to live there.

#49

I live in the northeast and suffer from seasonal depression. I basically hibernate from november until april. Besides moving, I’d really like to talk to people about how they’ve conquered their depression. I’m a really cynical person and depression has got me beat :confused:

#50