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Prinzmetal Study

MoonFairy13
  • By MoonFairy13
  • Posted November 5, 2008 at 12:29 pm · 24 replies
  • Shared with the public
3 Recommendations

Just wanted to share the info on the study I have been in for quite some time. If you have or think you have Prinzmetal I would suggest you partisipating in this study. You can have your bloodwook just sent to Jewish Hospital from your doctors. Dee Marie

FREE STUDY AT THE CHOLESTEROL CENTER,
JEWISH HOSPITAL, CINCINNATI OH
PHONE 513-585-7800, FAX 513-585-7950, EMAIL glueckch@healthall.com
If you have well defined Prinzmetal’s angina, we may be able to help devise a safe, case-specific medical intervention, depending on the presence or absence of two gene polymorphisms associated with arterial spasm, and a mutation associated with abnormalities in nitric oxide synthesis. You can call the Cholesterol Center (513-585-7951) to make an appointment for this entirely free study in Cincinnati, which will take about 1 hour and small blood sample. Alternatively if you cannot get to Cincinnati give your history by phone which will take about 30 minutes of your time and arrange to send a small blood sample, we can work with you through the MDL laboratory of Cincinnati (513-475-6631) to get a mailed blood sample. After talking to us and giving your history ( 513-585-7951) then call 513-475-6631 (MDL) to arrange to have your physician draw a 5 cc purple top tube of blood so that the crucial PCR tests can be done and mail it unrefrigerated in a crush-proof container, overnight or 2-day delivery to MDL, 3130 Highland Ave. Cincinnati, OH 45219.

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Heart disease Cancer Heart failure Confusion GERD Stroke Sweating Angina Menopause Weakness Pain Heart attack Obesity Heartburn

24 replies

goingstrong

Please ladies, consider doing this! If I had this disease, I'd do it! We need more women to participate in the studies!
Lynn

MoonFairy13

I SO agree with goingstrong, if you are uncertain in ANYWAY that you might have Prinzmetal, are having many of the symptoms, have gone without a proper diagnosis but still keep having pain and problems, PLEASE seek out this study. You do not have to go to Cincinnati, you can just have some blood drawn at your regular doctors and tell them you want it sent to the study. The more people and more information Dr. Glueck gets the better he will be in maybe finding a cure. The way I feel about it is maybe the cure won't even be found in my time but perhaps I can help future generations.

Below are some of the symptoms of Prinzmetal "Variant" Angina, I do recommend you do research on the symptoms and compare to what is going on with yourself and speak to your doctor. As with so many with this disease, I went YEARS suffering needlessly because I was not a "typical" person who would have a heart problem (young and female in otherwise good health when it started)

Another problem was that I had so many of the symptoms at night and when I would go to my doctor or the hospital during the day there was no symptom at that time. It was not until I was in the hospital in the coronary care unit overnight that they witnessed what was happening to my heart.

A couple of the things that were really bad before I was being treated were terrible pains in my shoulder and jaw and sometimes in my arm. It would become worse if I tried to lay down to rest. No test but the cardiac cath showed anything since I had no blockage.

The best advice I can give you is to love yourself and your life enough to not take no or I don't know what your problem is for an answer or to just be handed more and different prescriptions while they wonder what it is you have. Also do not let them just give you nerve pills, pills for GERD, menopause, etc. but no answer to your complaints of feeling you have a problem with your heart. Again, if they don't want to do the cardiac cath, have your bloodwork sent to Dr. Glueck, it is free of charge to have them run the test on it to see if you have Prinzmetal or the lacking genes. Stand firm ladies, you deserve it.


Causes of Prinzmetal's Angina
Prinzmetal's angina is caused by a spasm in a coronary artery. This spasm causes the walls of the artery to tighten. This narrows the artery, causing the blood flow to the heart muscle to slow or stop.

Unlike other types of angina that usually occur in someone with coronary artery disease (also called CAD or heart disease), Prinzmetal's angina may occur in people with or without coronary artery disease.

Symptoms of Prinzmetal's Angina
Severe chest pain is the main symptom of Prinzmetal's angina. People with Prinzmetal's angina symptoms usually feel a pressure-like pain in or around the:

Chest
Shoulders
Jaw
Neck
Back
Arms.

It may also feel like a squeezing, pressing sensation in the chest.

Other symptoms of Prinzmetal's angina can include:

Indigestion or heartburn-type sensation
Nausea
Fatigue
Shortness of breath
Sweating
Lightheadedness
Weakness.

The severe pain or discomfort associated with Prinzmetal's angina:

Usually occurs at rest
Occurs between midnight and early morning hours
Can be relieved by angina medicine.

Diagnosing Prinzmetal's Angina
In order to make a diagnosis of Prinzmetal's angina, your healthcare provider will ask a number of questions and perform a physical exam, looking for signs and symptoms of angina. He or she will also recommend certain tests and/or procedures, such as an electrocardiogram (EKG) and a cardiac catheterization. During the cardiac catheterization, the doctor will look for any artery that spasms when chest pain occurs. If he or she cannot find a suspect artery, medicine may be given that provokes a susceptible artery to spasm.

MIsurvivorX4

Hi MoonFairy ~

I was reading your post dated 11/29, and am curious about a statement made regarding the Prinzmetal study at Jewish Hospital.

You wrote that sending one's blood samples to Dr. Glueck will enable him to give the patient the DIAGNOSIS of Prinzmetals based on the blood test. Did you mean to say that the blood test is being performed to find if one of the CAUSES of Prinzmetals is present - specifically a defective gene?

MoonFairy13

I've thought about your question Survivor and actually had a hard time finding the answer I think you are looking for. I just know for me that Dr. Glueck gave me a diagnosis of Prinzmetal after I suffered for years while other doctors kept trying to find the causes to my symptoms and gave me wrong diagnosis and horribly wrong medication. I suppose the good part was that I got a positive diagnosis and a reason why I had this disease, all from Dr. Glueck.

I guess if he finds the missing gene he could hold off the diagnosis of Prinzmetal but I don't know why he would. I know of some who had not been positively diagnosed and after sending their bloodwork to Cincinnati, they finally got their answer, a cause for their symptoms and the name to go with it....a diagnosis.

I guess maybe I don't understand the question. I feel like if the study finds the missing gene and know the persons symptoms, they pretty much have to make a diagnosis of Prinzmetal. We could just say that they were told they have the missing gene but I wonder why we are holding back in saying someone has Prinzmetal or who says it, I know for me it was just such a relief to know what I was dealing with and go from there, whoever got the credit for the diagnosis.

I remember sitting face to face with Dr. Glueck and being told I positively had Prinzmetal Variant Angina and the reason for it was a birth defect, being born without the genes needed to produce Nitric Oxide and that I will be dependent on other sources to get it into my system. I found out in a matter of minutes what I had stuggled with for years with other doctors. I am forever grateful for his diagnosis.

Diagnosis: 1 The nature of a disease; the identification of an illness. 2 A conclusion or decision reached by diagnosis. 3 The identification of any problem.

Just grateful for my diagnosis,
Dee Marie

arabianhorselover

Have any of you wondered why, if like myself you don't have the genes present to produce Nitric Oxide, that you didn't have a problem sooner. I didn't have a problem with it till I was 41. Some are older.

Lisa

tonyam

Hi Dee Marie,

Dr. Glueck sent me the forms and paperwork this morning to get going in the study. I'm interested to see if I too have that gene defect. There are some thoughts out there that the lack of Nitric Oxide may also be a link to my rare Hemiplegic Migraines. Maybe we can solve two problems at once.

Thanks for the link, Tonya

MoonFairy13

Hello Lisa,

I like you have wondered that many times and that is one thing I have concentrated my research on and why I believe it does have to do with hormones, or I should say disturbance in them. I believe this problem, although we are born with it seems to be worse when our hormone levels change, especially lowered by perhaps early menopause symptoms, cyst, birth control, etc. Now when I started having problems the doctors didn't find anything wrong but did put me on a hormone pill and I began to feel better again. Then I found out that I had a tumor on my ovary and was going to have to have the ovary removed. BAM as the good chef would say, I was hit hard with the spasms. The spasms were becoming very regular. I was kept on a hormone pill but then the doctors took me off of it for fear of a stroke or blood clot and the problem started sending me to the hospital.

As I saw my hormone levels decrease I saw the problem with this increase. So I do believe there is a connection there and do encourange everyone to mention this fact to their doctor or especially Dr. Glueck.

I have long said that it is going to be the people who actually suffer with this disease who end up solving it and perhaps find a cure. What we have to do is knock down all barriers to what "normal heart diseases" have taught the doctors. This is not your normal heart disease, we are a very special make-up of people with special needs. We have all been though the normal testing and most kept coming back with normal results and we went home knowing it was a wrong diagnosis.

Yes, age and hormone levels seem to be very much a part of what sets off this disease and causes it to raise its ugly head at a time we should be enjoying our life at a different stage. I remember my dear mother going through a horrible time when she reached her mid 40's. I am sure now she probably had this disease too, God rest her soul, she had to suffer without ever finding out.

My recommendation is to always do research, starting putting into google the words hormones and Prinzmetal, hormones and heart spasms, etc. Make notes. I constantly compile information and take it with me to Cincinnati to turn in with my question sheet they give me. Do I worry about offending the doctor? NEVER AGAIN, I am my doctor first. : )

Dee Marie

MIsurvivorX4

Hi Dee Marie,

Sorry for the confusion :) but ...
Here is the quote from your post I was referring to:

"Again, if they don't want to do the cardiac cath, have your bloodwork sent to Dr. Glueck, it is free of charge to have them run the test on it to see if you have Prinzmetal or the lacking genes."

It might be better said "... to see if you have the lacking genes that cause some cases of Prinzmetals."

I have had three MI's due to Prinzmetals, which was diagnosed per heart catherization. BUT, if I had not had the caths and simply sent my bloodwork to Dr. Glueck, it would have come back negative for the defective gene. Therefore, per your quote, no diagnosis of Prinzmetals, which I have. I have Prinzmetals due to whatever cause that has not been 100% determined (and probably never will be). So lucky me has idiopathic Prinzmetal's, but wish it turned out that I did have the defective genes so at least I would have a concrete answer as to the cause. :)

I have been told that the 100% gold standard in diagnosing Prinzmetals is via a heart catherization and possibly challenging the arteries with injection of ergonovine or something similar. I believe that all patients should be able to request it if they are not given any answers from their doctors and they continue to have chest pain. I would definitely request it, and if turned down, make an appointment elsewhere such as Mayo or Cleveland Clinc.

Just like you, I don't want anyone to suffer from this rate heart condition that WE seem to have to keep pushing the medical professional to recognize and be 100% aware of and educated about.

Please tell Dr. Glueck THANKS for taking an interest in this study to help many (even though rare) patients.

MoonFairy13

Hi Tonya,

So glad to hear you got your paperwork and are going to get started! I will tell you, one thing they are always interested in and usually ask about IS headaches. They are very common with this disease and I think also another connection. Raynauds is another disease closely related to Prinzmetal for some reason. I can only think that it must have to do with the small vessel spasms but I do believe the answers will come from great questions and research that tie in all these "side" symptoms that seem to hit so many of us with this disease.

I wish you well with your testing and hope that you can find some answers. Although it is not something I would wish on anyone, just to know what you are dealing with is SO much better than not knowing and feeling like you are crazy when all the regular heart test come back normal.

Blessings to you, keep us up to date Tonya!
Dee Marie

Trissie

Hi Survivor, I totally agree with you that the missing genes identify one brand of Prinzmetals. To say you don't have Prinzmetals if you don't have the missing genes is absolutely wrong.
I lack one of the genes, the L-arginine is a big help for me, I take aboaut 10 mgs of it a day. I've been diagnosed with Prinzmetals for years.
My daughter lacks neither of the genes, yet she has had 2 MIs from Prinzmetals. She takes a very small dose of the L-arginine, and finds it very necessary in her regime.
We both felt a bit put off by Dr. Glueck when we got his answer because there has been no follow up from him. That was over two years ago.
But don't let what I said stop you from applying to the study because if you do miss those genes you will have one definite answer.

Trissie

MoonFairy13

Wow, I don't think I EVER said if you were not found to be missing the gene from the study that you didn't have Prinzmetal. I DID say you could find out that maybe you had the missing gene which is a known precursor to having Prinzmetal and only meant if you couldn't get an answer from regular tests or they refused to do a cardiac cath with ergovine, this was another avenue you could TRY. I in no way said this was the ONLY way you would or could be diagnosed or even told by a doctor that you might have Prinzmetal idiopathic or otherwise) and have mentioned cardiac cath many times, but know that many doctors won't do this with the drugs to bring on a spasm.

Also Trissie, it says on the research page that "If we find eNOS T786 hetero or homozygous and/or stomeolysin-1 5A6A hetero or homozygosity, then we will suggest treatment with 12g L arginine, available OTC in 1g capsule." It doesn't say anything about following up with those who have the genes and I think it is a little unfair to say that Dr. Glueck should have followed up with your daughter if she didn't meet the criteria for his study.

I know you have written that "I am sure that Prinzmetals is heritary. My Father and one of his sisters had it, but both died many years ago before any knowledge of spasms was discovered. One of my sisters, and one brother have it, also one of my sons and one of his daughters, tho she isn't diagnosed because "children don't get it", but we know the symptoms. And of course my daughter and possibly one of her three sons." -- I was just wondering how all of your family members were diagnosed positively where you say they all have Prinzmetal? Was it from the cardiac cath and are any of them missing a gene like you? That is VERY interesting to have so many in a family test positive and should encourage us to have our family tested if this is the case.

Well, I probably won't add anything else to this discussion, I think it is being picked apart and losing the purpose of letting people know the different ways of finding out a reason, cause or diagnosis for their pain.

Sorry if I said it wrong or used a wrong word.

Wish you all well and hope you find the answers you are searching for with the right words.

God bless you all,
Dee Marie

MIsurvivorX4

Arabian ...

I've asked that question, too! Why did it all this not start until I was 42?

I would like to see more studies done including stats on number of patients with Prinzmetals, female vs. male, how many have actually had an MI.

The hereditary issue needs to be addressed, especially since my young kids have actually asked me if it is. I was told by a top doc that it was not hereditary. So far I have not come across anything in articles. The others docs I've asked basically shrug their shoulders. I would like to know if Dr. Glueck is collecting any information for publication. I work within the medical profession and hope to dive a little deeper into journal research on this - if I ever find the time!

arabianhorselover

Well, if you have these gene mutations, it is definitely hereditary. You had to get it from someone else. I do want to have my parents tested, but haven't brought it up to them yet. Also, my brother and his little girl and my own children need to know about this. Fun, fun, fun.

Hany

Thanks Moonfairy

I called Dr Glueck , he was really nice, very friendly and very helpful. He said I could send my bloodwork from here in England and he would do the tests. I will definately do that if the results of MRI are inconclusive. They will be checking for ischemia but my doctor wont do ergonovine and I am definately not keen on it either. Thanks for the details and info on prinzmetal. I will ask my doctor about it.

take care

Hana

MoonFairy13

You are very welcome Hana, that's why we are here. Individually we sometimes can't figure out the answers but sometimes together, we feel strength and get information that we normally wouldn't think of. I recall a quote by Mother Theresa that said something to the effect of Lonliness being the greatest afflection to mankind. I have known this to be true in my life.

Just know that you have friends, even from across the ocean. From your computer I am your next door neighbor, just close your eyes, I am there holding your hand.

If your test doesn't give you any answers at least you are not just sitting there doing nothing, you are reaching out yourself and being tested for something else, if that proves not to be the answer you promise not to stop there, you are worth the search and the correct answer.

I was emotion when Dr. Glueck gave me his answer from my test. I wanted to know what was wrong with me but I guess I also wanted to hear that I had something temporary, something that was going to go away, so I was really torn. He was very kind in how he sat me down and told me. He not only told me that I did have Prinzmetal and he believed my cause was from the fact that I was lacking the genes to produce Nitric Oxide, he also explained why this happened to me. It started at my conception, when all the beautiful cells and genetic makeup of a baby are begun. I had some that for whatever reason were left out. It isn't known if it is just something that happens or if one or both of my parents lack this gene to pass on to me. He told me he would help me any way he could and also that he hoped this research would help me and others like me.

I felt comforted at that moment of emotional turmoil, I felt like I had someone who was fighting for me for the first time since I had no family who did. I had been totally alone for so long except for a dear friend I had in Cincinnati who helped me get into the study and let me live with her and gave me a job.

You have heart sisters who are also fighting for you, I want you to know that whether you have Prinzmetal or not, it doesn't matter to me, we are to help others, I believe that is a big reason we are on this earth.

So you keep me up to date on how things are going hun and know that you as all those who struggle with heart disease are in my daily prayers.

Blessings,
Dee Marie

MIsurvivorX4

Has anyone taking L-Arginine or participated in the Jewish Hospital study received an answer as to why the new warning label on L-Arginine?

It states that L-Arginine should not be taken by those who have had a myocardial infarction (heart attack).

This is on my bottle manufactured by NOW and purchased at GNC.

Nikki333

I have also read that you are not to take L-arginine if you have cancer.
One note... When I e-mailed Dr. Glueck he wrote this back, "First we need to learn more about the diagnosis. How was the diagnosis made. Was there evidence for coronary artery vasospasm during angiography, etc. Get me that evidence, and then we will go from there." Whe I called his office and talked to the nurse, she said I needed a letter from my cardi. saying that I had Prinzmetals and why he thought so, just a few sentences. I thought this is going to be interesting, so I called and talked to my cardi.'s nurse and told her and then faxed a letter to my doctor asking him to write this letter. We will see what happens.
My question, L-arginine seems to help, especially when I increased the dose, BUT not stop the spasms. i would think if you gave back what your body needed it would stop it!!! Any insight?

Kennarina

Getting back to MoonFairy's original and very important post informing us about the Prinzmetals study....

At the Mayo Clinic Science & Leadership Symposium that some of us here have been lucky enough to attend in Minnesota, we learned that virtually all cardiac research over the past two decades has focused on male patients, with females either not represented at all or represented in such small numbers as to be statistically insignificant. In fact, until recently, fewer than 20-25% of cardiac research studies included any women!

Why is this? The answers surprised me. According to Mayo Clinic cardiologist Dr. Sharonne Hayes, founder of the Mayo Women's Heart Clinic, it's partly because women are reluctant to participate in cardiac research trials. Male heart patients are much more willing to volunteer as research participants. Women will, apparently, sign on for HORMONE research studies - but not cardiovascular research.

Things are slowly changing in the wonderful world of cardiovascular research, with some funding agencies now requiring that women and minority groups be fairly represented in study methodology before research can be funded.

But this still means that women MUST volunteer to step up and be counted - on this Prinzmetals study and every other cardiovascular research trial you might qualify for. Until we are willing to do this, all women will continue to be under-diagnosed and under-treated, as our doctors continue to diagnose and treat us using the only tools they know - the ones based on men's experience of heart disease.

For more information about upcoming cardiac research in your area, visit: http://www.healthfinder.gov
This is the U.S. Department of Health & Human Services site, where you can also sign up for their free Daily Health News e-newsletter that, besides interesting health-related articles, lists emerging research trials in different cities.

Meanwhile, thank you so much DeeMarie for bringing up such an important piece of valuable info for those looking for answers.

XOXOXO

Hany

Hello MoonFairy

Thankyou so much for your kind words. It is really lovely to know there are people like you that understand the struggles many of us face with doctors.

I think it is barbaric that in the 21st century women are left undiagnosed and untreated and then treated like lunatics because of lack of awareness of women heart issues. We shall see how my tests turn out but it is very frustrating that the only sure way to diagnose prinzmetal is so risky.

Anyway it is really great to have your support and the identification with other sisters on this website. Youre right it is very lonely. That is something I struggle with. Especially without a name to my problem , people find it hard to accept. I think even with a name , people find it difficult . They think youre crazy or gonna kick the bucket soon. People dont want to see sickness or suffering.

I dont speak to my mother anymore. She is very morbid and says how I have no future. She keeps talking about death. My father is the only one I talk to and he is a star.

I am sure things will get better though . The chest pain has been a bit better the past week (halleluyah) and I notice it does come in cycles , phases. Sometimes the chest pain can last a whole month then I will have maybe 2 weeks where I am a bit better. Anyway long may it last .

I bought some chutney and chocolates and tea as gifts today , this year I didnt think I was going to see christmas. I will hang out with my brother and have a quiet time hopefully. And do something enjoyable at new year with my one friend who has been really good to me. Go to the theatre or something.

Anyway Godbless

take care

Hana

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