Just diagnosed with prinzmetal's, need someone who can relate

[kwinner]

I'm almost 42, and yesterday I got the birthday present no one wants!  I was diagnosed with Prinzmetal's.  I have so many questions I don't know where to begin, and of course while I was with the cardiologist, all I could think of was am I going to die?  I'm searching for answers to things like how serious is this?  How is it going to effect the rest of my life?  Am I going to be here to raise my kids?  How do I explain what I have to people?

My cardiologist put me on long acting nitro, in conjunction with the nitroquick I already take with attacks, so I feel like I have some protection, and that someone is finally listening to me!  I actually feel like I can even go to the ER if something happens because I have a name for it now and they won't think I'm just a nut!

Mainly, I need to knwo there are other poeple out there wiht this that are doing fine, that have gone through the rollercoaster of diagnosis and can give me a glimsp into how to deal with this like a sane person!
Thanks,
Kwinner

[diva2008]

I'm Almost 36, and I was diagnosed with Cornoary Mircovascular Heart Disease which cause a diagnose of Angina. I had a cath that said the large vessel was not block but I was still having chest pain and SOB my cardiologist look at my stress test which was abnormal. I'm on Imdur which is a long acting nitro and Ialso have nitroquick for acute attacks. I have other issue with my heart also but it feels good to have someone to listen to you and not say to you it's in your head. I will like to know what cause your diagnose in the first place.    

[Oldstyle]

I too have Prinzemetal, well at least thats what they believe. I became sick a year and a half ago and just recently discovered what the problem is. Doctors don't tell you anything, I did'nt know what was normal so just kept comlaining about the pain and thinking I am some kind of whimp but the pain is real. Now I am fighting with the ins. co., again I don't know how to deal with this, they say I am not disabled but from what I can find out this condition may be fatal and I don't want to die at work. I have found nobody to talk too yet but keep looking. So many questions so few answers

[kwinner]

Hi Ladies,

I've done a lot of searching and found a website that has been an incredible support.  http://www.inspire.com/groups/womenheart/discussions/

The women have all sorts of heart issues, some with Prinzmetal's, but they're all incredibly supportive and caring.  I couldn't have made it through the first few days without them. You can ask quesitons, or just vent.  The fear that goes with this is so normal, and more common that you think.  We're not alone!  Check it out, support is so important!

I was diagnosed after a year of chest pains, during which I was treated for reflux and all sorts of other thigns. Misdiagnosis in women in frighteningly common.  You're not a wimp, the pain is real, and so is the fear.  Now I take long acting nitrates and nitroquik for attacks.  Yes, Prinzmetal's can be fatal, but only when not controlled, so they work with meds to control us, and we learn to live our lives with  new perspective.  I'm here if you need to talk.
K

[Oldstyle]

Not a lady, perhaps that makes my situation even more unique. The insurance co also said I don't have Prinzmetal because it is typically a womans issue

[kwinner]

Oops, sorry!  The research I've read says Prinzmetal's is actually more common in men.  Team Inspire has a bunch os support groups, since they have one for women, I'm sure there's one for men to, might be worth checking out.  Insurance companies stink, I'm sorry you're having problems with them on top of everything else you have to deal with.

[fulldeck]

i to have pinzmetal's started 12-05-07
my meds or isosorbide mono 60mg 2x aday & nifedipine 60mg 1x aday

[doubledmarie]

I was diagnosed with Prinzmetal on Christmas eve 3 years ago, not the present from Santa I was looking for.  : (  I lived in Cincinnati for a while and joined the Prinzmetal Research Study at Jewish Hospital with Dr. Gleuck.  I was tested and found to be missing the genes to be able to produce Nitric Oxide, which keeps your arteries from going into spasms and possibly producing a heart attack but almost always producing angina pain.  I don't know if they are still taking patients, I know the study was to go on for several years and it would be worth it perhaps if you could make the trip there or they do allow your family doctor to send your bloodwork for them to test.  It was my definate diagnosis.
Life has changed drastically for me, I am on all kinds of medicines, seldom am able to go a day without at least some liquid Nitro and nightly sleep is a thing of the past.  Unfortunately sleep is disturbed and pain occurs mainly between the hours of midnight and 8 a.m.  I have been on L-Arginine since I started the study and it helped some at first but it seems my body may be getting to used to it or something because I have not felt as good lately.
I have an appointment with Dr. Glueck this coming Wednesday to see what is going on.  I too want to check with him about getting on disability, I have not been able to work for almost 2 years now and just can't afford to go on without it.
It is always good to know there are others out there to talk to, especially with a disease like this that is considered a fairly rare heart disease.  Also, it is more common in men, the only place they have seen higher incidents of women in in Japan for some reason.
Feel free to write to me anytime, always glad to share any information or things I have gone through.  I know how hard it is to be told for years I have Gerd, depression, hormone imbalance, you name it, anything but the one thing I actually had until I almost died from it.  Especially for women, we don't fit nicely into the doctors catagory of a person who should be tested for this disease and many times we end up suffering needlessly because of it.
I will you all well.
Dee Marie
***@****

[rosequartz]

hello,
can you tell me how they diagnose for prinzmetals?Is there a blood test they can do to see if you are lacking in nitro oxide ?Is it caused by narrowing of the arteries? Do you only get the pain between midnight and morning? Are you fine at other times? I am very ill now all the time, so weak with chest pain every day.I cant even walk to the end of my road .very exshausted all the time. I get the same treatment , the doctor thinks I am anxious, he makes me anxious.It is so rediculous, I first felt pain 8 years ago. I am going to try and get another running test and doppler. It would be a great birthday present if someone gave me a diagnosis ,then I could do something about it .anyway when there is life , there is hope as my dad used to say .
god bless

[mistique40]

Hello,
I'm 42 and also been diagnosed with prinzmetals. They have me on norvasc  10mg also inderal  la 60mg  and nitroquick 4mg. It took 2 years and nine doctors and way to many on called  for test. For a answer to what it was that I had. One of the top cardiologist  in my town told me. That there was nothing wrong with my heart. Two weeks later I found a doctor that listened and had me. He had me go for a cath. Went into cardiac arrest on the table twice. I was told that I'm lucky that I didn't have a heart attack. Trying to work has been next to impossible. Between the chest pains and being tired all the time And employers not understanding what it is. Makes it a little hard to hold a job. Unlike some who have this disease I have chest pain morning, noon and night. Like all of you I never have one ounce of energy. But I live life to my fullest and am grateful for being alive everyday. I look at life much different now. I don't take anything for granted anymore.

[kwinner]

Isn't it funny how a heart diagnosis can rearrange your proirities?  I had a heart attack in January at 41 before I was diagnosed, but they said I was too young for it to be a problem - lol - when is a heart attack not a problem?  My cardio understands it is a problem, he added Norvasc to the 120mg of iso, and I've been under pretty good control for a couple of months.  I live my life differently too, and stress is a major trigger for my spasms, so I'm learning what people and things are toxic for me and eliminating them from my life.  I'm learning to say no.  I'm learning I can't be all things to all people.  I'm learning my life depends on it.  I plan on living a very long time, which is a long way from my inital fear I was going to die any moment.  My time is in God's hands, but how I choose to live it is in mine, and I choose to make the most of every moment, whether it's my last or not.  
All my best,
K

[mistique40]

Hello Everyone,
I hope everyone is doing well.
I went to a new cardiologist a few weeks ago. To find out that I was being overdosed on my meds. My last cardiologist had me on way to much blood lowering medication. My blood pressure was 80/59 most of the time in which I could not move around most of the time was always tired.
I have been taken of every med.I feel better then I ever had in the last three years. No more chest pains everyday. I'm not tired, also have lost 17 pounds of water gain from the meds I was on. I will have to still take something for my prinzmetals. but I have to wait until I'm done coming off the inderal la. The most important thing I have learned is to never mix  Inderal, Norvasc Long lasting nitros, and nitroquicks.  All I know is that before I found this cardiologist I just wanted to die. I was just so tired all the time, I had chest pains everyday, every bone in my body hurt, couldn't sleep, more unless I just couldn't function.  

Everyone Take Care & Be Well

[SBF]

Hi, I'm sorry you've been through the medical "mill"... I developed chest pain last Christmas time, thought I was depressed or going nuts but hadn't been able to afford my inderol for a couple weeks.  Finally saw my doctor and got a referral to a Cardiologist then had an abnomal stress test... but no chest pain until after, on my way home.  

The short version... is I researched pain upon laying down thing and found Doctor Glueck's study in Cinncinatti... gave the information about him docs here, but I have other health problems that make the heart cath a bad idea.  So another bad stress test and without a formal diagnosis... and the nitro making my migraines much worse and not working very well if I took it frequently... I started on the L-Arginine anyway.  It's a natural amino acid and I prefer natural treatments when possible.

It's been very effective, I took 10 grams a day for a couple months but it's a bit expensive and when I ran out for 10 days the chest pain returned... but, as long as I take at least 4-5 grams per day I very rarely have any angina... and when I do I can usually pinpoint an emotional upset as the cause.  In addition to the arginnine I use bio-feedback relaxation techniques I learned to help with the migraines and chronic pain... They did a nuclear stress test this last time and I don't have blocked arteries... and I've also been told in an offhand manner it's only acid indegestion (by a doctor who spent all of two minutes with me) that's unfortunately a fairly common mis-diagnosis.

The L-Arginnine 10 grams per day is something to try that doesn't seem to have side effects and has improved my quality of life a great deal.  If you've already received the diagnosis of Printzmetal's Angina look up Dr. Glueck's study online... he works with patients long distance too and can order the blood work to send to his preferred lab.  He seems a very nice man, as he returned my e-mail and I think he's really on to something as the arginnine helps your body make what's "missing" that causes the spasms that can be so frightening... and sometimes deadly.

My Dad died of a sudden heart "attack" when he was young and others on that side of my family have had "unusual" heart problems... so it could all be due to a genetic problem with spasms in the arteries that supply the heart.  I avoided the heart cath because they have to irritate the heart to cause the spasms while they are doing the proceedure and my other health problems just won't allow for all that.

I hope you are feeling better and just let me know if anyone has additional questions... I know it's not indegestion in my case and don't really care if I have the correct diagnosis as long as I control the spasms and avoid any more trips to the ER!  SBF

[BillK3]

Just found this post.  I've posted on the "Expert" forum on my Prinzmetal experience, but never looked here.

Very interesting thread on Prinzmetal.  Didn't know about L-Arginine.  I'll have to do some research here!

[grendslori]

I started having this problem an August of 1999. I had a normal EKG but an abnormal stress test and normal cath. This does affect me at times, but I have learned to take it easy when I'm having chest pains. I also have Raynuards as well which is also a constricting blood vessel problem. I just live with it.

[BillK3]

Those of you involved in the Prinzmetal Research Study...

Is L-Arginine the only med they are researching in this study?

[HarrietD]

A heart surgeon suggested I go back to the internet and find a doc who has written about Prinzmetal and make an appointment and so I found this site.

Having had mutliple esophageal/stomach surgeries, I always thought the spasms were due to espohageal problems...however my legs/stomach began to swell so badly, I could not bend my knees and bearing walk...working as a chaplain and traveling to different hospital became torture.  I was tested for everything, cinluding Lyme disease...finally during a heart cath last August, I had a seizure due to the anesthesia and they saw the blood vessels spasming.

I have found I cannot take the usual meds, so am on Norvas (amplodipine) and nitro when needed which is all the time.  Cannot take the time release or the nitro patch.  Days when I can't lift my arms over my head and am dragging...however, I am a health food nut, so definitely am going to try the L-Arginine.  Went to a heart surgeon (woman) at one of the hospital I work in just to get someone to listen.  She suggested until I find the answer...going on Ativan 3x per day...don't want to do this, but might have to. Also, even at 63 going back on hormone therapy since breast cancer is not an issue and for women this will assist many issues in women to recover.

Have to work, so am trying to get through each day.  She indicated that one time she did do surgery on a woman who vessels would not quit spasming and the patient was dying.  The surgery was a successful although having been trained at John Hopkins, she was even called on the carpet for doing such as there "is nothing one can do for  Prinzmetal disease"!

I also feel that there is some connection between the arenal glands as when I am at work and in the middle of a crisis, I never had problems...only have relaxing...then here comes the pain/spasms.

I am going to start L-Arginine on Monday.

Harriet