Sorry! My website is on http://angelalidin.com
love from Angela
----- Original Message -----
From: “kwinner” prinzmetals-cpt3051@lists.careplace.com
To: angela@angelalidin.com
Sent: Saturday, March 22, 2008 4:07 PM
Subject: Re: [prinzmetals] Prinzmetal’s syndrome Member Introductions
Your family sounds wonderful! You’ve done a great job raising your kids! I hope mine turn out as well! I lost my mom 4 years ago to cancer, she was my best support, so without her everything is just a little harder to wrap my brain around!
My iron was good last time they did labs last month, I’ll have it done again next month. My pulse tends to run at 98 resting, will go up to 150 for no particular reason, so good to know it’s part of this stupid thing! I’ll talk to the doc about Norvasc, I take something for high blood pressure, high cholesterol, and hypothyroid… see why I’m feeling like a train wreck??? 
I’ve always been healthy and active, so in the last 2 years everything seems to be falling apart on me! I blame bad genes!! I also have this fun pain on the left side. I’m wondering if that isn’t from 3 weeks straight of attacks every night… maybe it’s just sore and tired? I sort of tuned out after the doc said “It’s your heart,” so forgot to ask him about that. It’s on my list for next time!
I would love to hear your music! Thank you! I’ll check out the website and send you a note!
Hugs,
Kristen
Happy Easter, everyone! And thanks for letting me join you all:-)
Love from Angela
----- Original Message -----
From: “kwinner” prinzmetals-cpt3051@lists.careplace.com
To: angela@angelalidin.com
Sent: Saturday, March 22, 2008 5:47 PM
Subject: Re: [prinzmetals] Prinzmetal’s syndrome Member Introductions
Hey folks, I posted back in November but there wasn’t much going on here.
Tell me this; do you tend to have your “attacks” in clusters? I seem to to OK with this for a period, but then I have the constantly for a period.
Also; do you have pain in your throat? I do at times and it feels like my throat is restricting.
anli63, you mentioned low iron. Strangely enough I have a genetic disease that causes me to store iron and not eliminate it. It has damaged my organs, brain and joints.
Darryl
Hi Darryl - yes, it comes in clusters, I’ve read it’s cyclical, and I’ve had the throat constriction too. For me that doesn’t happen necessarily with an attack, and honestly, I think it’s me working myself into a tizzy about the next attack, but I have read also that the pain from the attacks can radiate to the throat and jaw. The clusters can be once in several months, to every night for several weeks, then some time off. Are you having them now, or are you in a breather? Have you had it for very long?
Kristen
Morning everyone, I had an interesting night last night. I had a spasm, went away quickly with nitro so that was easy. But then a while later I woke up to intense pain in my neck (right side oddly enough) - about where your corotid artery is I’m guessing. It felt exactly like a spasm, and it went away quickly with nitro - but what the heck was that?? Has anyone had something similar, or have any idea where to send me for research?
Thanks, and Happy Easter!
K
kwinner, When I have them, it’s mostly throughout the day, many times a day, sometimes for weeks.
This has been going on so long that I don’t think much about it much anymore unless the pain is so bad that I have to take the nitro.
The throat pain is usually associated with exertion and I only recall one bad episode at night.
Darryl
A - I’m so glad you’re doing well! I’ve missed chatting with you, good luck with the album!
Hugs,
K
Hello Everyono, I was diagnosis with Prinzmetal after having a cath last week to verify the diagnosis. I had a heart attack last month after barrel racing at a rodeo. After having an emergency cath, I was told I had one artery that was 100% blocked and that they were unable to place a stent as the artery was too narrow. They sent me home and said we would treat with medication. I continued to have chest pain and kept taking the nitro they gave me all the time. I finally went to Univ of Kansas Med Ctr, where the doctor reviewed the film from the original cath and immediately saw another artery in the midst of a constriction…he explained Prinzmetal and what he thought my condition was. He wanted to go in a look at the artery and see if they could fix the original blockage.
I have read all of the great information you all have shared. Thank you so much.
I have one question, will I ever be able to barrel race again? My doctor is avoiding the question and won’t even let me ride a horse at this point. (I have just started cardiac rehab which is giving my some idea of my current limits.) I get really worked up/scared/excited before I run, is that bad for triggering an episode? I’ve read extreme emotional stress can be an issue. I was in good shape before this happened, now I just sit around being “quite” and I feel like I’m loosing my mind!
Any comments would be great.
Thank you,
Marybeth
I was riding 3 horses a day when my prinzmetal appeared… since it took the doctors so long time to figure out what it was I took me several years to get back into the saddle again…
But, don’t give up! I’ll pray for you…
I had to stop everything for a while… but now I’m back on track. On Saturday I have a new album to release:-)
love from Angela
(going to Sweden now, but I’m back home on Monday)
Good Morning,
Last month I had a heart attack and have been diagnosed with Prinzmetal Angina. Please I need any information you can give me. I am fifty, fairly active and scared. At the time of the attack my daughter and I were training for the Breast Cancer 3 day/60 mile walk in November. The doctor told me to resume training, but I can barely walk from the parking lot to my office without becoming winded. I was walking 3-5 miles several times a week before this happened. Now by the time I make it eight hours at work, and fix supper I’m done for the day. My house is awful, I just can’t seem to get it all together again. I’m scared of another heart attack. Everyone seems to think I should just be back to normal whatever that is. I had the heart attack on Sunday morning and was taken by medflight to OKC. They did the cath on Monday and there was no blockage at all. So they sent me home on Tuesday and I was back at work on Thursday. On Friday my supervisor asked me if I was always going to be this tired…so now I’m trying to keep my energy level up at work. I just don’t know, three years ago I lost my 22 year old son to mitral valve prolapse. I worked so hard to climb out of the abyss that followed his death. Now it seems that I’m slipping back and there is no one to talk to. I’m sorry I know I’m rambling, but I just don’t know what to do.
I’m so sorry you’ve had all of this to deal with. I know it’s so scary, and so life changing. It’s definitely possible that the meds you’re taking now (and I’m assuming you’re taking meds) for Prinz could be making you tired. It’s also a major blow to the body to suffer a heart attack. Please be patient with yourself, it takes time to heal. I’m also so sorry for the loss of your son. I lost my mom 4 years ago and I know that abyss you talk about. The only advice I can give you is to take control of it. Seek support, find out if there is a support group for HD in your area. Depression is very common after a heart attack. If you need to talk, feel free to email me at kwinner2@comcast.net. Also, if you haven’t already read through the posts, do. You’ll see how we have all been where you are, so scared and feeling so alone. A huge part of recoverying is knowing there are others who are in this with you. Please let us know what you need to help you get through this.
Hugs,
Kristen
Thanks so much for replying…it helps alot just to talk to others who have the same problem. The doctor never talked about additional atttacks to me, so until I read your posts I didn’t have a clue what to expect. Currently I’m having mild to moderate chest pain quite often. So far I’ve refused to take the nitro because of the headaches it gives me. It seems that until the pain in my chest is as bad as the headace it will cause I can without the nitro. But after reading your posts maybe I should take it when it hurts? I’ve got to get back to work, but again thanks so much for answering me.
If you have Prinzmetal’s you are at risk of attacks at any time, because they don’t know what causes the spasms. Medical control is the goal, and calcium channel blockers are the gold standard. Some of us also take long acting nitrates. It can take a while to get the right med combination, but until you’re medically controlled, you can still have spasms. If the nitro gives you a bad headache, sometimes people can tolerate the patch better without the side effects. If you have to take one, make sure you’re somewhere you can sit down or lay down, because it causes a drop in blood pressure, sometimes poeple feel light headed when they take it. Also, you can probably take Tylenol for the nitro headache, but be sure you check with your doc before you take ANYTHING over the counter. A lot of stuff is a vasoconstrictor, and that’s a big problem for us!
I know there’s so much information to digest, and so many questions. Feel free to ask what you need. There’s some good research on the internet but you have to spend some time, also search coronary vasospasm and variant angina. If you’re not on daily meds for it, you should call your doc and find out why, other than ignorance, there’s really no excuse for a doc not treating you systemically for this problem. There is medical control, and that’s where they should be headed with you.
On another note, Angela, where are you!!! My girls and I listen to your music in the car and they keep asking where my friend who sings is!
Love and hugs,
K
Hello I’m here:-)
I am working with my new album and I am so grateful that my health is working with me at the moment:-)
Yesterday I was at the local TV station for an interview and to share a song.
I am still working to get in shape after years of struggling with Prinz without help… but I think I will make it now:-)
Love from Scandinavia and Angela
been thinking about you:-) how are things with you?
Love from angela
Things are good! I’ve been a couple of months with no attacks, since they started the CCB with the Iso, once we got things adjusted! It’s so strange sleeping through the night! The kids are back to school, so things are busy, but everyone is healthy and happy (as much as an 11 year old is happy!) It’s almlost hard to remember what the attacks felt like - but I’d rather not be reminded!
Hugs,
K
Hi dczachary, welcome to the crew. This is one of the few places where i found answers and people with whom to share. There are so few people around with our problem. If you go thru these chats page by page you will find good info.
I too had a heart attack 6/6/08, was 45, and just finished running a barrel race at a rodeo. It didn’t make sense for me either. I felt so much like you do, scared, frustrated etc. I was back in the hospital a month later and was diagonosed with PMA. I know you feel tired all the time. THAT IS SO NORMAL! Go to cardiac rehab, they will help some but not a lot because they don’t know anything about PMA. It’s been 3 months for me and i just now am starting to feel a little better. I was taking nitro 3 to 4 times a day until just last week. The chest pains are normal but scary. I got used to the headaches, they aren’t as bad now. Just remember if you have to take 3 in a row, get back to the hospital. I haven’t come close to that. If you need to talk or have a shoulder to cry on you can e-mail me at marybeth@roydurfey.com with you number and I’ll call you sometime.
Good days and bad. How about you?
----- Original Message -----
From: “anli63” prinzmetals-cpt3051@lists.careplace.com
To: marybeth@roydurfey.com
Sent: Friday, September 19, 2008 9:41:52 AM (GMT-0600) America/Chicago
Subject: Re: [prinzmetals] Prinzmetal’s syndrome Member Introductions
Good Afternoon Everyone, Once more I appreciate your replies and email addresses (I’m sure I will be using them) more that I can say. I’m currently taking a calcium channel blocker everyday, and they gave me a long acting nitro to take daily also. I waited until Friday night to take it and suffered with a terrible migraine all day Saturday until 11:00 a.m. Sunday. The doctor said if the headache was too much, just to take it when I have an attack. First the fast acting nitro and then when it has subsided the long acting one. There again in my ignorance I didn’t ask them how often or how many of the fast acting nitro to take. I really think my doctor is learning about this right along with me. After spelling it for me he told me to get on the internet to learn about it, and how to handle it. It was misdiagnosed when I was flown to the city with the heart attack and I was put on a beta blocker. He gave me the diagnoses when I saw him last week and changed it to a calcium channel blocker (after apologizing for the misdiagnosis) and gave me the nitro (they sent me home from hospital without nitro). I know I’ve heard if you take more than three in fifteen minutes to get to the hospital, but how far apart do you take them? Also everthing says that this wil hit between midnight and 8:00 am, I’m having chest pains in the late afternoon also, do you ever have them at other times of the day? Has anyone tried Vitamin E with the Calcium Channel Blocker? Some of the sights mention that it might make it work better. Thank you so much for your patience with a newbie… Have a great evening! Debbie