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hi there, i work with the careplace team. i think careplace is awesome. i hope it will really help people to share, support eachother and learn. we can all use support and understanding and it is so important for all of us who have experienced difficulties to have a safe and informative forum in which to do so. thanks for visiting - it is really rewarding for all of us to see people reaching out to eachother - it is what careplace is all about.
Life is about health, family and friends, but sometimes its hard to keep focus on what is most important
I am a single parent of three wonderful angels. I have a daughter, seen in my photograph, and two unique and wonderful boys. My two sons were both born with an extremely rare genetic disorder known as “X-Linked Alpha Thalassemia Mental Retardation Syndrome” Both boys are have sever developmental delays. Both are non-verbal and communicate with limited signs. They love to laugh and are easily entertained by the small things in life.
Founder of the TransGlobal Health Community Center at http://transglobalhealth.com
I have been diagnosed with Prinzmelal’s Syndrome. I had my first heart attack (and stent) 3 years ago and my second attack (and stent) 1.5 years ago. I still have a lot of unstable angina and I hate the meds. I am a 42 year old mother of three teenage girls. It seems that since I started my cardiac drugs three years ago I have so many other medical problems… ulcerative colitis, autoimmune disease, SOB, and I feel lousy most of the time. Has anybody else out there had other problems and are they related???
I first became interested in this condition when my Dad was diagnosed a few years ago. Back then we had searched for an online Prinzmetal’s group but couldn’t find one, so made one of our own since I moderate a few other kind of forums as well. I’d also like to learn more about this condition as it is so rare.
Thank you for the invite =))
have been diagnozed with prinzmetal’s syndrome, and put on dilzem. feel anxious and uncomfortable much of time - is this the drug or the disease?
My wife has Prinzmetals and I need to know more about it
Hello everyone,
I am a 45 year old male, diagnosed with Prinzmetal angina several months ago after years of unexplained chest pain and S.O.B
I also have a genetic disease called Hemochromatosis as well has chronic Hep C., which has caused a myriad of problems that I just accept as par for the coarse.
Anyway, my primary doc sent me to a heart doc who did an EKG in his office.
Although I had had several unremarkable ones in the past in my primary’s office, this one showed something that really got the heart doc excited. He explained that I needed a heart cath and stints, now! It was around 5:00 on a Friday afternoon when he told that he could not let me go home or drive to the hospital myself, so I was transported myself.
Now I have a wife and children, and I have came to terms that I will not live a normal life span, but I got to say that this put things in a different light. I had settled on a slow progression, with time to take care of business. This just seemed to sudden.
Well, I had the cath within two hours of going to the doctor, was told my arteries were fine but going into spasms.
At least I know I’m not imagining these episodes anymore.
I am taking Norvasc daily, and nitro pills as needed.
Hey there.  You sound just like me.  My attacks happened mostly at night, or during periods of relaxation.  I am also 42 and female.  I had chest pains for many years and was diagnosed with depression, anxiety and heartburn.  But one night the pain was much worse.  The spasming was so bad, I thought I would die, and I laid on the bathroom floor praying that I would live.  Of course, my husband believed the doctors who said I was just losing my mind, so he was no help.
Two weeks later after much arguing with a cardiologist, a heart cath showed that I had a 95% blockage in my LAD (the widow maker artery).  I had a stent put in at that time.  That was in 12/03, 4 1/2 years ago.  The rest of my heart looked great with no other blockages.  21 months later the same thing happened, and I had a reblockage of my original stent.  I now have almost 3 inches of metal in my LAD.  During the time between my stents I was treated by my cardiologist like I had standard coronary artery disease, even though I had no risk factors.  I was not over weight, my blood pressure was low, my cholesterol level was low, and I had no family history of heart disease.  Like you I often would pass out before or during the pain.  And my pulse rate is very high, usually around 100bpm.
I was so upset after the second stent.  Especially because the medication I was taking wasn’t really helping with the chest pains.  I went to see a cardiologist at U of M hospital.  He diagnosed me with Severe Prinzmetals.  There is a medication they can inject into your heart cath that will cause your arteries to spasm if you have the disease. ÂÂ
The moral of the story is:  Don’t let anybody tell you that prinzmetal can’t cause heart attacks… it can.  I know, I have had at least 3 heart attacks.  The spasming can be so severe that it ruptures and causes a clot. But this is very uncommon, and probably just bad luck for me. Technically speaking though, artery spasming and constricting is a heart attack because your heart muscle is deprived of its usual dose of blood.  And I know it hurts.  I have numerous dead parts in my heart from severe spasming before the correct diagnosis.
Now for the good news.  I found a new younger cardiologist who didn’t have perceived ideas about women and heart disorders.  and… I HAVE MY LIFE BACK!!!
Prinzmetal is thought to be more of a neurological disorder, where the nerve endings in the arteries of our hearts get mixed up and constrict more than they should (usually at rest), or even when they shouldn’t.  A new cardiac medication was FDA approved about 1 1/2 years ago called Ranexa.  It works with the brain to reduce spasming.  It really works great with no side effects that I can see.  Ask your doctor about it, he may never have heard of it.  It has been a life changing drug for me.  I also take norvasc, to help keep my arteries open.  Most doctors will want to prescribe a beta blocker to someone with chest pain, but for us it can cause extreme spasming, and even death.  I usually say I am allergic to all beta blockers.  Imdur also helps if you can stand it.  It is like a long lasting nitro pill, but causes horrible headaches.  In reading your posts I was not sure if you were prescribed any medication with your diagnosis.
I am the only patient my doctor has who he recommends that I carry nitro quick with me at all times.  I wear it in a container around my neck.  There are plenty of web sites that sell nitro holders.  You should look into this.  Sometimes when I feel that nitro around my neck  my pulse rate drops and I relax because I know that I can handle any chest pain.
I also have had luck with chiropractic care.  When my chiropractor first examined me he asked if I had any problems with my heart of lungs because of a sublaxation in that area.  That was enough to continue seeing him.
You should read a book called NO More Heart Disease.  It is written by a scientist involved in discovering why nitro works to stop angina.  He believes that a lack of Nitric Oxide causes angina.  I took the supplements he suggested and they really do work. ÂÂ
Because I have a stent inside a stent in my LAD I have a a lot of jailed arteries which cause stable Angina (pain with exertion); which is different from prinzmetal pain which is unstable (happens at rest).  For the last two weeks I have been undergoing a treatment called EECP (look it up on line).  This is helping tremendously, I have even been sleeping through the nights.  5 more weeks to go.  This can be very beneficial to prinzmetal patients. ÂÂ
I know you are scared.  But you will be okay.  You will probably have to slightly redefine who you are,  but you will get your life back.  I promise.  But, you have to understand that you are responsible for your own health care.  If you can’t be your own advocate, find someone who can do it for you.  If your cardiologist belittles you, get another one. ÂÂ
I am a little concerned when I read that you are so tired.  You might be anemic (low iron) which means your blood does not have enough oxygen and so your heart is deprived.  Like you, I often find it hard to catch my breath.  (even with vacuuming).  My cardiologist suggests that artery spasming might not be contained only in the heart.  The arteries in our lungs might also be spasming.  This is different from asthma where the bronchioles are in spasm.  I think he is right because often a nitro will help with shortness of breath also.
You are probably worried every night when you go to bed or at other times when you should be relaxing (I often would get attacks while watching movies).  You don’t need to worry so much.  Your body will not let you die by sleeping through an attack.  You will wake up and if you need it, take a nitro.  Your heart arteries are not able to constrict after a nitro.  It is not physically impossible for them to do so.  Your attack will end, and you will live.  Although I know at the time it does not feel that way.  On nights when I can tell I am going to have an attack, I often take a nitro right when I get to bed, and I don’t have any attacks.  Also ask your doctor if you can have some ativan or some other anti-anxiety medication to take at bed time.  It will help to take the edge off, at least while you are gaining confidence in the fact that you will be OK.
Five years ago, I couldn’t seem to get off the couch.  I was paralyzed by my chest pain; and even more paralyzed by the fear of the next episode.  Now,  I feel great.  I work full time, and am the mother of 3 teen-age girls.  We are not defined by our disease.  In fact, I can say that in the past year I have probably only had 3 or 4 periods of unstable angina (prinzmetal).  I used to get at least one every day.
I don’t know if you are religious, but I found this helpful.  I found myself continually obsessing about “the next episode”.  I decided that every time I thought about the “next” pain, I would say a thank you prayer because at that exact moment my heart did not hurt.  I eventually understood that I was letting a 2 or 3 minute spasm effect my entire day… so during the other 23 hours and 57 minutes a day I was still being controlled by my disease.  That’s when I got my life back.
There is hope, and you will be okay.  I can promise you.  Your life has not ended,  and now you know what your problem is (you are not crazy).
Well, it is getting late and I still have laundry to do tonight, so I will be going.  Please feel free to email me.  My name is Mindy and my email is parkermind@aol.com
Lot of luck and understanding,
Mindy
-----Original Message-----
From: kwinner prinzmetals-cpt3051@lists.careplace.com
To: parkermind@aol.com
Sent: Fri, 21 Mar 2008 11:05 am
Subject: Re: [prinzmetals] Prinzmetal’s syndrome Member Introductions
Mindy,
Thank you so much for sharing your story and all of the information. Wow, other than the stents, our stories are so similar! I actually believe I had a minor MI one night on the bathroom floor - only the doc told me I had a virus! This wasn’t my regular doc, and he also told me I was ripe for a heart attack because of cholesterol and high blood pressure - but then proceeded to tell me there was nothing I could do but take meds because it was hereditary - obviously will not be going back to him! 
Your insight into a 3 minute attack ruling the rest of your day is powerful! Thank you. I do spend a lot of time thinking about it, dissecting what I’m feeling, waiting… but you’re right, now the disease is controlling me and I’m stronger than that! I do have faith, I believe God has a reason for all of this, and I believe it’s not my time. I’m generally the strong one, maybe He’s trying to teach me it’s okay to rely on others for help, and to admit I’m not as strong as I think I am! I do count my blessings every day, and say thank you I didn’t have an attack or a heart attack today, thank you for another day, another birthday. I seem to have forgotten for a minute what my strength really is. Maybe it’s just a reminder of how precious life is.
I am taking a long acting nitro every night before I go to bed, with the quick when needed, and mine doc told me to carry it with me everywhere too. You’re not alone! I do love my cardiologist, the first time I met him Thursday he sat with me for an hour and talked, told me exactly what it was, what we’re going to do about it, and what to do if nitro didn’t help within 15 mintues (3 pills). After a year of fighting with my internist to see a cardiologist, it was a relief in a stange way. He said I’m “textbook”. I wanted to cry and hug him at the same time! He is younger too, and very kind, so I feel confident he’s going to take good care of me. I do think they might need to do more testing, I’m not confident a stress-echo would be conclusive on blockages - if even small ones can throw a clot from a spasm. You have given me such good information to take in with me when I see him next, thank you! He did say they weren’t going to do the angio with the meds to provoke an attack because it was too dangerous, I was happy about that!
I do have some ativan I took for the anniversary of my mom’s death, didn’t occur to me it might be helpful with this, but yes, it makes perfect sense! I’ll look up the others meds and treatment you suggested and add that to my list for him!
I have much more peace today than I had yesterday! You and Angela have helped me immensly and I am so grateful! I’m a planner, so I’ve made lists of people for my husband to call to stay with the kids, written down things they need to know about me if I go to ER, someone suggested a medical alert braclet if I can’t speak for myself. My mom always told me it’s the things you worry about the most that never happen, so the more you plan, the less likely they are to happen! I’m praying she’s right on this one, but if it happens, I’ll deal with it and know I have support and encouragement from people who have been there and survived! And I’m going to survive too!
Thank you for being such a blessing to me! I’m glad you finally found the right cardiologist and have gotten your life back! I’m going to take control of mine too! (Which I’m sure doesn’t mean I won’t have momentary freak outs where I’m going to come running to you all for more reassurance!)
Love and hugs,
Kristen
I’m new here, just was diagnoseed with Prinzmetal’s yesterday, so I’m feeling a bit scared. I’ve had chest pains for the last year my doc didn’t take seriously, determined it wasn’t my heart. Yet I heard from the caridologist it is my heart. Can anyone help? I’m going to be okay, just scared and need to hear from someone who has this and can give me some support! My husband doesn’t get it, and I don’t want to make a big deal about it, but it would be nice for someone to acknowledge it’s okay to be scared! I turn 42 this weekend, not the birthday gift i was wishing for!
Thanks,
Kwinner
I had some hard years too before the doctors found out what was wrong with
me. I have had the symptoms for as long as I can remember, but was diagnosed
in 2004. It was hard to get up on my feet again, after having several
angina-attacks per day… Since I’ve got treatment for the illness I have
been better by the days. Now I have learned to take care of my self and I
can see the signs before I get to the attacks. It helps me a lot to take
iron, in addition to the treatment for Prinzmetal’s syndrome. Cause when my
blod gets too low on iron, I have much easier to get angina-attacks.
Hope this will be at some comfort to you.
For me it has been a long road to get well enough to live a normal life -
but mostley because the doctors did not see what was wrong…
With love from Scandinavia and Angela
http://angelalidin.com
----- Original Message -----
From: “kwinner” prinzmetals-cpt3051@lists.careplace.com
To: angela@angelalidin.com
Sent: Friday, March 21, 2008 4:05 PM
Subject: Re: [prinzmetals] Prinzmetal’s syndrome Member Introductions
Angela, it is HUGE comfort knowing others have this, and that they also had a long road to someone finally figuring out what it was! My internist was beginning to look at me like oh no, here she comes again, that nutjob! I’m glad to finally have a diagnosis, wish it was just reflux, but I’ll live with it. I don’t seem to have blockages, which is good, but the attacks are so scary. Thank you for the support! My husband just says “everything is going to be fine, it’s no big deal,” but it feels like a really big deal, and so I’ll search and search until I have enough informaiton to breathe again!
Kwinner
I have been there… I have made a full check on my heart, so I know that it
is nothing wrong with it and I have no blockages:-) But, the attacks are so
painful and can be frightening, to our self and for people around us. I try
to detect them as early as possible (it’s hard during sleep, though:-) and
take some painkillers in addition to my medicine.
I have learned that if I am careful with using my arms, the risk of having
an angina-attack is lesser, and I need to eat and sleep regularly. I can
push my self a little, and in that way slowly build up myself. It is a
project:-)
I have had such strong attacks that my husband didn’t know if it was
Prinzmetal’s syndrome or a heart attack! At the beginning I went to the
hospital, something that my doctor still wants me to do, but now I just stay
in my bed - trying to relax as much as possible.
I will be here for you as much as I can, but since I am on the road a lot I
might not be able to answer you directly at times… But you are always with
me in my heart! It feels so good to know that there are someone out there
who knows what I am going through:-)
Love from Angela
http://angelalidin.com
----- Original Message -----
From: “kwinner” prinzmetals-cpt3051@lists.careplace.com
To: angela@angelalidin.com
Sent: Friday, March 21, 2008 4:55 PM
Subject: Re: [prinzmetals] Prinzmetal’s syndrome Member Introductions
You’re so great thank you! What do you mean being careful using your arms? Mine almost always happen when I’m sleeping, once I passed out before I had one, but I don’t really get signs - other than a little tightness before the real thing slams me. They feel exactly like a heart attack, and no one who hasn’t had them gets that. They are terrifying! I was getting so tired of people telling me I’m too young, I’m healthy, it’s not my heart. Well guess what guys! Now my husband is so freaked out he can’t talk about it at all. I’ve never gone to the ER because I was afraid they’d tell me the same thing - you’re fine, go home. Now that I have a name for it, I know I can go if the nitro doesn’t work and not feel like an idiot!
What do you do you spend a lot of time on the road?
Thanks for being there! I’m sorry we have it, but I am grateful beyond measure I’m not alone!
K
----- Original Message ----- From: “kwinner” To: Sent: Friday, March 21, 2008 8:31 PM Subject: Re: [prinzmetals] Prinzmetal’s syndrome Member Introductions
If I work with my arms above my head or if I use my arms on the step machine
I can easily get an attack later on - usually during the morning hours the
next night. I seldom get the attack right away… I can feel a pressure in
my chest and feel like I’m not getting enough oxygen, you know while
climbing the stairs or so. I get red in my face and my heart bets like I can
tell my pulse just by listening. On
the plain ground I can walk fast and
far, without a problem. I’m not a fan of cleaning windows:-) Luckily my
husband doesn’t mind taking them:-) Still, I can do it now - if I take it
easy! So, it’s getting better:-)
You will learn to feel the signs. You may not be able to avoid the attacks,
but you can hopefully reduce them… or at least get some painkillers that
will soften the fall:-) I have a small pill, to take daily, that helps my
veins to relax. When I get an attack my doctor has recommended me to take
one more, and to chew it, in addition to the nitro. It does help some.
<<<<<<<<Sorry, I sent it by mistake… here comes the rest:-)>>>>>>>>>>>
They gave me beta blockers at first - before they know what I had, and that
made it worse!
I use to pass out, but that was before my doctor told me to lay down during
the attack. You see, since the blood pressure drops during the attack it is
natural to pass out:-) I have been as low as 46/33 without passing out - and
that is low! I even scared some of the doctors:-) (buy your own to measure
your blood pressure, it helps you to learn more about what is happening to
you and makes you feel more secure)
Well, they thought that I had a mid-life crises, death anxiety and that I
just needed the extra attention??? Been there, done that:-) The problem
for me was that before I came in to the hospital, I was feeling better - if
not OK! But I scared the ambulance staff to death, though:-)
I have never smoked, never used alcohol or drugs, don’t like coffee, just
love healthy food, had horses… You know where I am going with this:-) I
just wasn’t the person to get this symptoms…
I am a singer/songwriter, and when I released my last album I was in the
hospital, trying to find out why I had these attacks… That was four years
ago. Now I am at the end of the recording of my new album. It will be
released next month, and this time I will be able to work full time as a
musician:-) It feels sooo good! I have been working hard since January, and
I have spent much time traveling - since we have recorded the album in
Sweden (where I am from:-). Tomorrow I’ll be going to Stockholm again, for
one last week, to finish the album. It’s a journey of about 600 km. When I
was at my lowest point I could not travel by car at all, since it trigged
the attacks…
Love from Scandinavia and Angela
----- Original Message -----
From: “kwinner” prinzmetals-cpt3051@lists.careplace.com
To: angela@angelalidin.com
Sent: Friday, March 21, 2008 8:31 PM
Subject: Re: [prinzmetals] Prinzmetal’s syndrome Member Introductions
Good morning! It’s my birthday, and I didn’t have an attack last night, I’m calling that my gift!
Our experience sounds very similar. My PB drops during attacks too, but I’ve only passed out once. It was almost as scary as the attack! In the mornings I feel pressure, and my pulse is racing. I tend to run fast anyway, but it’s just pounding. At night sometimes I know I’m going to have one before I go to sleep, but it doesn’t always happen when i think it’s going to. Do you get very tired? I’m so tired these days, I can hardly stand it! I’m not one to sit around, always up doing something even when there’s nothing that needs to be done! I’m used to having more energy than I know what to do with, so this is frustrating!
Congratulations on your new album and your tour! That’s very exciting! I’m very boring, I work from home so I can be here with my girls - 8 and 10. I have had to cut back on walking my dog, she’s huge and I’m not sure who walks who, but I get winded running the vacuum, so running with her is on hold for now. Excercise never brings on an attack, just makes me feel like I can’t get a good breath, but then sitting on the couch sometimes does that too! I’m feeling like a train wreck! I’m in Oregon, today is a lovely sunny day, nice change from the rain we’ve bene having! I’m going to pretend I’m fine today and go with that! No window cleaning on the schedule!
Hugs,
K
Reading your mail brings back memories…
That’s the thing, that the heart seems to pound harder:-) During the time
that I was most ill my pulse (while I was resting) was about 95/minute - and
it was hard, loud and I felt like I was running a marathon… Normally I
have about 60/minute during daytime and down to about 50/minute at night.
Still, nobody seemed to care!?
During the attack my pulse is racing up to 150 or so, and at the end of the
attack it use to drop to about 40. Now I haven’t had an attack like that for
as long as I can remember:-) I had some small ones last fall, and I felt the
beginning of some this year. I haven’t used my nitro for several months:-)
I was also tired like you, and my big change came when I got NORVASC, the
medicine that relaxes the veins. After being in bed for four months, and in
and out of the hospital, I was up and going after two days! If you don’t
have this medicine I recommend you to talk to your doctor. NORVASC is what
they give to people with high BP, so it is nothing dangerous and it’s
nothing that you will get addicted to.
As I said before, it is also important to keep record of the iron in your
blood. There are two ways to measure it, I don’t know what you call it over
there, but it has to do with blood % and blood “storage”. You see, anemia
(or if you are below your own limit of what your body needs of iron to
handle the Prinzmetal’s syndrome) will make the attack’s more frequent! In
Norway you have anemia if your “storage” is below like 10-15, but if I am
under 25 I am at risk all the time to get an attack.
I have been home with our children, and I think that is one of the best jobs
in the world - and one of the most important! You have my respect:-) My
youngest son is 19 this year, and he and his brother (soon to be 20) are
running my new record company:-) They want to give me something back for all
that I have given them, and I want to give them something to build a future
on:-) For the first time in my life I can give 100% to my career! So, it
feels good to know that my health is working with me:-)
Thanks for your kind words! I hope that you will have a wonderful day -
happy birthday to you! If you go to my website, you can send me an e-mail
(you’ll find a link there) with your address (if you want to) and I will
send you one of my CD’s as a birthday gift:-)
Lots of love from, a snowy and sunny, Scandinavia and 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