prinzmetals angina

Yes the same happened to me, usually occurred of a night time either watching TV, woke me from my sleep or cold weather. Over time, not a great deal of time mine started to occur during the day as well and would last for hours. The biggest triggers for me is high emotional stress, cold weather, even a puff of wind to the face would set it off and also extreme heat. I even get it with out triggers, as you know it just comes on out of nowhere while at rest.

wow, good report... interesting and yes that is how most of us feel.... I would say don't cancel but.... that's just my view... on the Arginine, I use it at 1000 per day at lunchtime so as not to add to anything I already take... I found it helped significantly....... but as today is a bad all round day, I will stop here, just wanted to help where I could........ welcome to our club, it is fairly exclusive, but....  and of course my sympathy on a massive life changer...... but that is all it is a life changer..... well ok a dramatic life changer but ....

Hi There,

Very well described and actually that's how I was diagnosed with prinzmetal angina,with the same description of symptoms to doctors, only difference with me is there is never alway any ECG's changes. I am on all the "gold" standard medications and as you have reitterated sufferers become immune to the nitrates, I have an action plan in place, it was put in place by my current cardiologist,(not that it works I still end up in emergency) he at the time wasn't convinced it was prinzmetal angina , I wait 30 minutes and use the GTN ( spray under the tongue ) if pain is still there and being persistent to then call an ambulance, by that time I've had up to 7 sprays (5 minutes apart ) sometimes I have double sprays as I have also been told to try that. GTN does nothing to my blood pressure now, as in dropping it way down. You mentioned a sympathectomy, there is a lady in this forum, and I must apologise as I can't remember her name, she has had this procedure done, from memory it had made a big difference for her but still has problems with it, I could be wrong with this statement and if she is reading our comments she will correct me and tell you all about her experiences with this. I put it to my cardiologist, this sympathectomy, now I think I'm understanding your meaning of this, do you mean have the nerve cut to the heart from , I can't remember which side, parasympathetic or the sympathetic side of the nervous system ? Any rate back to me asking my cardiologist about this procedure he informed me that it is not done here where I am, which is Australia so that idea went out the window. Like you have said there is no cure for the spasms, it is a life changer but a lot of cardiologists don't see it that way, they seem to just think ohh yes spasms, hurts a little but surely not that much, how would they know unless they have experienced it themselves.

My retired cardiologist here years ago was reviewing my medication and found the patches you mentioned, I was put on them by my GP at the time under advisement from our emergency departments cardio consultant, you know what, he told me to throw them away when I got home, this cardiologist first diagnosed me as having small blood vessels within the heart spasming. When I had my first heart attack (mild) another cardiologist explained to me what was happening, what the cause of the spasms were, I have a rather weird lipid profile and because of that the cholesterol was eating/absorbing the nitric oxide in the endothelium, and that would set off all the spasms, apparently this nitric oxide helps keep our arteries smooth amongst other things, it's the best description given to me to date and in laymans terms, something that I could understand, no big fancy words. This cardiologist concurred with the emergency doctor years ago of the diagnosis of prinzmetal angina.

This year I have had lots of ECG changes on the paramedics portable ECG monitors, I've had lots of AF's and lately a lot of prolonged QT's, all of which is of no real major concern at the moment, I have had a lot more troponin rises this year. I usually run between 5-8 with my troponins, which of course is negative but that's my baseline, sometimes it will move up to 11-12 but not often, in the last 6 months it has been sitting around 29-40 with a couple well past the 40 mark, the last troponin level I had was 20 and the nurse tried to tell the doctor that's what I normally sit on, now what I would like to know is how could a nurse say that to a doctor knowing full well that the negative cut off point is 14, I know the doctor didn't listen to her because a repeat blood was taken and troponin was on it's way down, it can actually vary between lab testing equipment, depending on the brand name, cut off point varies from 13-15 in high sensitivity troponin lab testing equipment.

I'm a smoker myself, still trying to give them up, I've smoked for 36-37 years. I'm sure there's more than nicotine that's addictive in cigarettes these days, I remember in my younger days I could go hours without wanting a smoke, last 5 years I can't go past half an hour to an hour with out one. Every now and then when I light a ciggie up ,not even half way through it I start to get the spasms, the nicotine does trigger off the spasms. I'm the silly bugger for smoking I know but I do not believe cigarette smoking is the "sole" cause of coronary artery spasms as suggested by doctors.

I should of said this at the start, Welcome to the group, as Andrew has said there are many people here who are in the same boat, have had some relief, have had bad turns. This forum has a lot of true blue information from real people that suffer from a real condition, a lot like myself have come accross doctors and cardiologists that refuse to diagnose / believe in prinzmetal angina. The information and experience sharing here is great, top crowd of people here

Thanks for all the kind words and help.

I don't know if this has already been discussed but whilst searchiong for info on using L-Anginine I found a couple of research papers done by a Doctor Glueck. One of his tests actually saw Prinzmetal totally reversed in 7 out of 27 patients with the other 20 all showing a big improvement. Hoiwever, it uses a large daily dose of L-Arginine but was a pretty fast study and treatment, less than 5 months.

I want to try this out particularly as my CAS/Prinzmetal has only manifested itself within the last 5 to 6 weeks, maybe it could help before it becomes much worse?

My only worry is that although continuing to take asprin and Amlodipine is mentioned there is no mention of the Nitro patches I wear at night. I don't know if they might cause too much of a BP drop or something worse. Asking my Cardio will be a waste of time because he doesn't seem to fully understand CAS anyway.

Has anyone else tried this large dose use of the amino acid L- Anginine? I have also read that taking Arginine alone does not always work but in conjuction with something called L- Carnitine the body does react very well and produces it's own much better levees of NO therefore arresting all blood vessel spasms much more naturally.

Here's what I found:-

"In 2012, Mercy Health announced results of a research study on the painful condition Prinzmetal’s angina conducted by Charles J. Glueck, MD, Medical Director of the Cholesterol and Metabolism Center at The Jewish Hospital – Mercy Health, and published in the American Journal of Cardiology.

Glueck found that affected patients had a mutation in a gene that prevented them from producing nitric oxide, which helps dilate coronary arteries and thus bring increased blood flow and oxygen to the heart. He also reported that a daily dose of 9.2 grams of L-arginine, a simple, inexpensive amino acid widely available over-the-counter, greatly relieved patients’ symptoms, which mimic and can cause a heart attack and include terrible anginal chest pains radiating toward the jaw and arms and a feeling like an elephant is sitting on the sufferer’s chest.

Glueck has continued his research and his latest findings, which the journal Translational Research published this month, note that not only does the L-arginine treatment reduce sufferers’ symptoms and greatly improve their quality of life – it may also effectively reverse the effects of the condition that causes Prinzmetal’s angina in the first place. This new publication confirms all of the findings of the initial American Journal of Cardiology publication.

“A majority of people with Prinzmetal’s angina have a gene mutation that prevents them from converting L-arginine into nitric oxide, which dilates coronary arteries. With reduced nitric oxide production, Prinzmetal’s angina sufferers experience sudden excruciating chest pain, often when at rest, that greatly impacts their quality of life,” said Glueck. “In our study, patients with the gene mutation who took a daily dose of the amino acid increased production of nitric oxide, greatly easing their Prinzmetal’s angina symptoms and effectively reversing the painful side effect of their gene mutation.”

Glueck is continuing to study Prinzmetal’s angina and can evaluate patients with this disorder in person in Cincinnati or provide advice by email and fax for patients who live out of the area. For more information or to make an appointment, contact The Cholesterol and Metabolism Center at The Jewish Hospital – Mercy Health by phone or email

“It’s important that people have a confirmed diagnosis of Prinzmetal’s angina before embarking on any course of medication,” said Glueck.

Glueck’s second study followed 27 patients who suffered severe angina despite conventional treatment. Translational Research published the study authored by Glueck, three internal medicine residents at The Jewish Hospital – Mercy Health (Alejandro Valdes, Dedrick Bowe, Siddharth Munsif) and Ping Wang, PhD a biostatistician at the Cholesterol and Metabolism Center at The Jewish Hospital – Mercy Health.

From the Journal of Laboratory and Clinical Medicine “TRANSLATIONAL RESEARCH”

July 2013

The endothelial nitric oxide synthase T-786c mutation, a treatable etiology of Prinzmetal's angina

Charles J. Glueck , Alejandro Valdes, Dedrick Bowe, Siddharth Munsif, Ping Wang

Cholesterol and Metabolism Center, Department of Internal Medicine, Jewish Hospital of Cincinnati, Cincinnati, OH

Abstract from the report:-

""We assessed to what degree the endothelial nitric oxide synthase (eNOS) T-786C polymorphism, leading to reduced nitric oxide (NO) production-coronary artery spasm, was reversibly associated with Prinzmetal’s variant angina (PVA). ENOS T-786C PCR analyses were done in 19 women, 8 men, 26 Caucasian, 1 African-American, median age 53, with well-documented PVA and in 72 healthy controls who did not differ by race or gender. Of the 27 cases, 7 (26%) were homozygous for wild-type normal eNOS (CC), 13 (48%) were T-786C heterozygotes (CT), and 7 (26%) were T-786C homozygotes (TT) vs controls, 44 (61%) CC, 27 (38%) TC, and 1 (1%) TT, P < 0.0001. The mutant eNOS T-786C allele frequency in PVA patients was 27/54 (50%) vs 29/144 (20%) in controls, P < 0.0001. On oral L-arginine (9.2 g/d) to increase production of NO for a median of 4.7 months in 16 PVA patients with symptomatic angina despite conventional nitrate-calcium channel blockers, using the Seattle Angina Questionnaire, satisfaction with symptom remission rose (median) from 50% to 100% (P = 0.004), satisfaction with angina frequency reduction rose from 65% to 80% (P = 0.02), satisfaction with treatment for symptoms rose from 38% to 88% (P = 0.001), and perception of overall life status rose from 25 to 71% (P = 0.0002). On L-arginine (median 4.7 months), in 20 patients, none had worsening of angina, and of 7 patients whose angina totally resolved, eNOS T-786C homozygosity was over-represented, P = 0 .04. The eNOS T-786C mutation appears to be a reversible etiology of PVA in patients whose angina may be ameliorated by L-arginine.""

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Hi,

Thanks for all the information on a study(ies) you have come accross, if you don't mind I'm going to cut and paste those studies and show my cardiologist. My retired cardiologist did warn me that I would be getting an new cardiologist who is still a bit green behind the ears, he wasn't wrong, wouldn't listen, this and that is just not possible, you know things like that, he is well versed theoreticaly in cardiology, but not all that experienced, text book reader I believe as he is around 15 years younger than me. Altough on my last visit to him he seems to have matured quite a lot compared to when I last saw him 12 months ago.

Remember me saying when I had my first heart attack that another cardiologist, had told me that he concurred with the emergency doctors diagnosis of prinzmetal angina and went on to explain what was causing it. I see this doctor that is doing the study is from the cholestrol and metabolism centre. This is the issue I am having, I have "apparently" an extremely weird lipid profile and I have been spoken about worldwide about my cholesterol, now the second cardiologist that concurred with the PM diagnosis as I have already mentioned had said it was the cholesterol, in my case anyways, the major cause because it was absorbing/ eating up the nitric oxide in the endothelium. I wonder if they have ever consulted each other , as you know cardiologists get to meet other cardiologists from all over the world during conferences and the likes. My retired cardiologist, from what I have read and heard worked in France and USA.

As I said very interesting post by you and confirms my belief about cholesterol and CAS ..... prinzmetal angina. My situation was 2 cardiologists said my cholesterol would cause me grief and the third one I'm under at the moment disagrees. I do have mild heart disease , compared to my weird lipids, mild is good, one would of thought I'd of hadnearly 100% blockages by now as it was found I had weird lipids profile around the age of 30-32.

Hi gain Samuels,

I've just eturned from an apointment with my GP to talk about the possiblilty of rearanging for some time in the future my hip operation and to ask for my prescription for my regular 2 monthly blood test to check my ferratine leves before I have another blood letting because I have Haemachromatosis.

I mentioned the study and trials with Doctor Gluek and mentioned the mayo clinc She had heard of the Mayo Clinic which I found inetesting as the French don't always follow up on no French language studies but my GP is quite switched on, more so than my VERY YOUNG Cardiolagist, (mid 30's!).

I told her about the work being done on actually attempting to tackle the root cause/causes rather than just treating the symptoms. She gave me permission, (not really needed but I like ti be polite), to contact Dr Gluek and ask for more info and if he needs any more study cases. I will do this as soon as possible.

I have been in contact on a different CAS/Prinzmetal sufferes group site, with two of the people in Dr Glueks studies both of whom have noted massive improvements; one of them has not had a spasm in the 4 years he has been taking the treatment of simply Amlodipine and I beleive, L-Arginine in high quantiites to stimulate the body to produce it's own, natural Nitric acid. L-Arginine is a natural amino acid found in many foods with Kiwi fruits being very high with it. However, because of some sort of gene problem some people can't absorb enough of the arinine from food to stimulate the natural Nitric Acid production. At least as a lay man that's what it seems to me.

I like your idea of passingas much information around between Cardios especially as this research, in the scheme of things, is very, very new. Most of the trials and studies only started in 2012 amongst what is a small and very limited population of patients because our malady is so rare. It can take decades for decent research and human trials to be properly published so the more we can inform our Cardios the better.

I'll keep you informed.

Regards, Mike.

I had a NSTEMI as a result of coronary artery spams (diagnosed through an angiogram).

I am taking OMEGA 3/6/9 through cod liver oil supplimen and L-Argine and Caritine and I’ve been symptom free for coming up to a year (I went into hospital 30th of Oct 2016). I am 36.

I’m also taking garlic supplements for its anti inflammatory supplements and a daily aspirin 75mg.

N

Hello Nima,

Thank you for the message. Can you tell me more, I'm desperate for any and all information that could help?

Where are you in the world and where were you diagnosed and are meds and supplements prescribed by your Cardio? Also what quantities are you taking. I am on 10mgs Amlodipine, night time patches of slow release 10mgs Nitrine, 100mgs asprin daily and carry a natispray for using during an attack/spasms. I have read good things about L-Arginine helping to promote the bodies own production of Nitric Oxide and therefore doing away with the Nitrine patch which causes massive and very painful headaches which don't allow much sleep.

I have seen that Omega supplements, Magnesium, co q10, L-Carnytine and L-Arginine are used by quite a few Coronary Artery Spapsm / Prinzmetal sufferers to good effect. I want to try and see if any/all of these can help but am not sure what quantities to try.

The study undertaken in the USA by Dr Glueck used a high dose of 9.2grammes of Arginine per day and seemed to have helped everyone of the patients in the trial, but I'm a little worried about interaction with the meds I am taking at the moment.

Regards, Mike.

Hope it is not agin the rules to ask whereabouts you are situated...!

Or, which hospital you attend and name of yr specialist ?

Thank you - MollyC (France)

Hi Molly,

I'm in Brittany as well, 29 Finistere. I have been treated both in Brest hospital when I was taken there by Helicopter Ambulance. I have always been treated at carhaix hospital with the same Cardiologue who worked between Brest and carhaix. He is very young though, even though he is fully qualified and is the head of cardiology!

Not sure about publishing names on the forum so if you want a bit more detail send me a private message and I'll answer whatever questions you have then.

Hey Mike,

I’m in the UK and was diagnosed in the Royal surrey hospital by Dr TP Chua during the angiogram where they saw and or induced spasms which were resolved by GTN spray. That lead to the diagnosis - at first I remember the junior doctor looking at erm saying “im so sorry” referring to me having been flown off to another hospital to have stent - luckily that was not the case!

With regards to the supplements no, the doctor did not prescribe them - i had 6 months off work to recover from the heart attack so kept myself busy trying to work out how on Earth I could have had a heart attack - frightening prospect at 35.

Long story short - I take the daily recommended allowance (what it says on the jar) which in my case has been 2g L-A, 2g L-C, and magnesium I can’t remember, twice a day. Same goes some Omega tablets - Solgar is the supplement brand I use but I suspect it didn’t really matter. 

I was prescribed diltiazem 120mg x 2 daily, fluvastatin x1 daily (apparently it helps even though cholesterol isn’t high) and given a GTN spray to use as and when.

I stopped all medication after 3 months - and have been symptom free ever since, whilst taking the supplements.

Hope that helps.

Hi there Scuba - Not quite local, am in area 22.  Carhaix 35mins away (going there this afternoon), and know the hospital.  Does that mean Dr R has retired, can't remember his name (Rualt ?  Summat like that) !  Older chap, good doctor, he even had a camper van in the car park so that he could be on hand for very sick patients.  If he has retired, sad.  Cannot abide young arrogant whipper snappers, still too wet behind the ears, but think they 'know it all'.     Know CHU Brest - my erstwhile rheumy is there and have seen a couple of other doctors there.  

Was thinking to go to CHU Caen, Normandy.  Centre of excellence.  That is where the vascular societe de France was set up, Dr Boris Bienvenu : see ORPHA 397 (ACG=GCA).  Just such a drudge to get there.  5 hrs by train, 2 changes- one at Rennes - and would have to stay over night.  

According to ORPHA CHU Brest is also a coordinating centre; for Paris, it is CHU Cochin.

Prob have to takean appt at Brest,so might dove-tail, but am more inclined to go to Caen !

What I found of much interest in the various discussions, was the time of year. My two horrific spasms werein Dec.  One at home, UK C'mas eve 1967, and the other here, in supermarche, nigh on C'mas eve, coming 2 yrs ago - up the isle in the frozen section !  Since, spasms have been rumblings, come in clusters.  Have the sublingual  Nitroglycerine to take.  Waiting for the nxt attack !

Thanks a bunch - gotta work out how to send a pm...

I see you are also from up the top end of the world, I'm from the bottom end

You mentioned your worst period of attacks is around December, I'm not sure if you are aware that cold weather or even a quick puff of cold air to the face will most certainly set off a prinzmetal angina attack ?

I too like No More Scuba have a young cardiolgist and he is also head of cardiology from where I am, My regular cardiologist has retired from our public health system and operates privately now, I go to see him if I don't agree with anything my replacement cardiologist has to say, he's still a bit green behind the ears as well, although my last visit to him 6 months agoI noticed that he has matured a lot since my previous 6 month follow up. To start off with he didn't agree with other cardiologists that have seen me doing rounds when I have been admitted to hospital over the years, I have been told by 3 cardiologists that I have prinzmetal angina and have had it explained to me in laymans terms as to what is actually causing my case, my replacement cardiologist is slowly starting to turn the corner, I think he has realised that he may have to concede.

Prinzmeatal angina is a condition not really recognised properly by the newer generation of doctors, I'm sure they breeze over it in their medical training but don't go to far into it, just the basics. All the older doctors that have attended me in our emergency have heard of it and have a pretty good understanding of it, like what shows up if at all, as you are probably aware nothing often shows up on ECG, stress tests, etc etc. I'ts a condition really that is dignosed by symptoms explained, sure there's a test available to actually confirm PM angina but it's not practised here where I am, "apparently" high risk, high mortality rate , I have had a couple of doctors tell me that any artery is going to spasm when a foreign object is inserted into it and even a couple of cardiologist have their views on this test, basically the same as the doctors that have mentioned to me their personal views with spasming, especially with a foreign object inserted into it I.E catheter in an angiogram procedure. I have even had them tell me that the drug they use to induce/ provoke spasms , I can't remember the name of the drug, there's 2 of them, they tell me that if they are a provocative agent then of course ones arteries are going to spasm. When I think about it that way, to me that does make a lot of sense, but this is only from a few doctors/cardiologists, they all have their personal opinions on this procedure.

I started getting my attacks over 15 years ago, over the last 5 years the attacks seem to be getting worse and in that time I have been informed I've had 2 NSTEMI's and in the grey area for a third one just recently. I do have mild heart disease, last angiogram showed no improvement, 60% occlussion in the RCA but another blockage, only minor though, 50% stenosis in the LAD.

Niccotine is most definitely a culprit in my expedience (I smoked electronic cigarette with high nicotine like there was no tomorrow in the lead up to my NSTEMI)

Hi nima,

Funny you should mention that, I have been a smoker for 36 + years. Doctors have pounded that into me in those 15 + years of this horrid condition, that nicotine is a major cause for spasms, I never experienced chest pain after having a cigarette ,BUT, I have noticed this year that it is actually triggering the attacks, I can literally feel the arteries spasm now. I am trying very hard to give them away but it's very hard, I've tried everything with the exception of hypnotherapy and the one where they use needle like things, sorry I can't remember the name of that ancient alternative treatment, The reason I haven't tried those 2 is because I don't believe in that kind of alternative treatment for smoking cesation, I haven't found or heard of enough evidence to say that it indeed works, I've tried nicotine replacement therapy and as you know they set any kind of angina off, I have even tried going cold turkey, I can't take the 2 medications that are available for giving up smoking because they are an anti depressant and I can't tolerate those drugs, I have what they call serotonin syndrome, something to that effect, what is working for me at the moment is reducing my cigarette intake gradually, I have gone from 30 a day down to 15, Back in March this year I had almost got there and was so close to being smoke free, unfortunately due to high emotional stress I hit the smokes again.

Now you are probably not going to believe this but when I have an attack of PM and get breathless, sometimes I will actually have a smoke during an attack of PM and I can catch my breath, I told my GP about this and he said that why that was happening is because the inhaled smoke was creating the opposite of the dangerous carbon monoxide by the body, I can't remember the opposite of it, it's on the tip of my tongue, I just can't spit the word out it's not the dangerous gas, it's the one that aids in breathing.

Might work for you!

Hi nima,

again you offer good advice. I have managed to cut down ciggies drastically. Two days ago I had my first ciggy free day for 30 years. I am at the moment on 2  to 5 a day BUT i am using a 'vape' with low nicotine content. I will try the vape liquid without any nictine because for me, giving up nicotine hasn't seemed to difficult, but that feeling of drawing in a smoke at the back of my throught is what I miss most, especially when in company, sharing a drink and conversation where everyone else is smoking. (It is France after all).

My periods of spasms don't particularly seem to have been abated by cutting right down on ciggies so perhaps completely cutting out the nicotine, as well as all the carcenagenes in the smoke, maybe that will help.

Thanks again, Mike.

I have responded to your previous message but it is awaiting moderation - I suspect because I mentioned the brand of Suppliement I take (?).

That said - yes I would highly recommend cutting right down to 0% on the vape, whilst I can fully empathise with you and I suspect it is even harder in France given the experience I had, I simply do not trust Any form of inhalation personally, with regards to the E-Cig.

From memory your symptoms are quite recent whereas I am coming up to the 1 year annerversary of my heart attack (more details in the previous response once its allowed to be visible).

I also, don’t have any issues with cold weather (so far) whilst taking everything - again details will no doubt become visibile via my previous post soon!

Thanks, Nima 

Hi nima,

They finally okayed your original post.

You say 2gof each Amino acid but is that twice a day so therefore 4gms of each or 1g of each taken twice a day ?

I'm going to try a reduced dosage of 1g each of L-A and L-C, 250mgs Co Q10 along with Vit c VitD Magnesium and Omegas 3, 6, 9, for a period of one month whilst I am still on all my normal medications to see if there are any mal interactions and also to see if this reduced dosage has any effect on the number and strength of Spasms I have. I am also buying a portable small digital personal BP machine so I can do two daily tests morning and night and record those along with recording when, where and how strong any Spasms I have are. I have been keeping records of when, (time and date), strength and duration of my spasms for a month already, so it will be interesting to see if there is any difference whilst taking the lower dose suplements.

If all goes well with that I'm going onto an all in one powder that has a 5.2g of L-A, 1.2g L-C along with the same vits and magnesium and a few other things. At that time I will begin to reduce the prescribed meds bit by bit being very attentive to any changes in my health no matter how small.

I will tell my GP and Cardio when I move on to the higher doses and will give them printouts some in easy to view graph form as a summary with detailed printouts of the data the graphs are made from.

I am a very analytical person and always need to see real evidence based information before I can believe almost anything I'm told and that goes for Doctor's too...... they may think they know everything but the specialists are just that.. specialists in their own fields and can be quite blinkered to any research outside of that field.

If I can show real data gathered personally over time I can help my 'profesionals' to better diagnose and treat me.

I'll keep you up to date.

Thanks again, Mike.