prinzmetals angina

Hi Bishpick,

?I have suffered from this for 17 + years, it started around the age of 30-35 and out of the blue. I was originally diagnosed as the small blood vessels in the heart going into extreme spasms, apparently you can't see them with the naked eye or any of todays testing equipment. I have had mild heart disease from 2012 when I had my first NSTEMI, they found a 60% occlusion in the right coronary and nothing else, had to attend cardiac rehab for 6 weeks. 

?I am a frequent flyer in at our local emergency department and I am known to all the ED doctors, rather embarrassing really, I get my share of doctors that have either never heard of prinzmetal angina or they don't believe I have it, a lot of them seem to think you have to have ECG changes to show that you have prinzmetal angina, I'm sure you know this is not the case. I have since had 2 more NSTEMI's since 2012 and had to have another angiogram last year, there was no change to the 60% occlusion however I now have 50% stenosis in the LAD, That small blockage occurred in a very small amount of time, 4 years. when I had my first NSTEMI the cardiologists that were looking after me they couldn't agree on the diagnosis of PM, 2 concurred yes I do and 2 weren't convinced it was PM. I have been told that high cholesterol has a lot to play in prinzmetal angina. I have been told I am on the "gold" standard of treatment for this condition but I  have had one cardiologist tell me that my body will become tolerant to all the nitrate medications, he was correct, when I have a severe attack, which is generally once a week sometimes twice a week, even more when there is high emotional stress present or cold, windy days . GTN spray will work for the first 10 minutes but after that It has minimal effect, it only stops the spasm pain  anywhere from 1 - 5 minutes.

?I am on very high doses of calcium channel blockers, I'm on 600 mg of Cardizem(Diltiazem) and 200 mg of pexsig (perhexiline) a day, Here where I am apparently the cardiologist can only prescribe the high doses of calcium channel blockers, the highest a GP can prescribe here is 360 mg. I'm also on Nicorandil (Ikorel) Monodur ( Imdur) , aspirin and the GTN spray. I have been prescribed pain relief to reduce the amount of visits to our emergency department, it gets rid of the pain but I highly doubt it stops the spasms, every tie I present I have to have 1 troponin test, I usually run between 5 - 8, which of course is negative, they use the new high sensitivity trop testing here so the decimal point is moved over or back one or 2 positions, I can't remember which way, it makes the number a whole number instead of the old way like which you mentioned 0.02. . In the last few months my troponins have been elevated and they can't understand why at times, in the last 3 months on an off it has been 29-50 which is well above the negative cut off point of 13. I have had some doctors ask me what prinzmetal angina is as they have never heard of it, then I have some doctors that think because the ECG is normal you don't have it, however I did have one emergency doctor tell me that if there is small tracings of troponin found in the blood stream indicates angina, they say ideally a healthy person shouldn't have any detectable troponin in their blood stream at all, sometimes this doesn't work out for what ever reason, when mine gets to 10 - 12 (negative) they just tell me it's my PM angina acting up again, that is , the doctors that do know my condition.

?Like you I have 2 rare conditions, however I was told only the one would kill me as you say prinzmetal angina in cases like ours are secondary, I have apparently a really weird lipid profile and none of the doctors or scientists throughout the world can work it out, their advice to the cardiologist and me is if I'm not having a heart attack to just relax .

Have they sent your lipid profile to an oncologist or to a hematologist to see if you are cd20 negative. If it's CLL or CML or any of the other lookee Mia's if your CD 20 negative your white blood cells are Carrie and calcium to your heart that will trigger an attack the other possible angle for a trigger is the esophagus many of the cardiologist missed this you can also have prinzmetal syndrome which attacks the smooth muscle cells of the esophagus the stomach and the intestines it is often accompanied by symptoms of irritable bowel syndrome such as frequent diarrhea. It is important to chase every Avenue to find what could be putting calcium in your heart or someplace else that a prinzmetal attack can be beginning and then spreading to your heart those low troponin levels are steady damage being done to your heart as long as you're still having the angina attacks do everything you can to slow or stop them it is the best advice I can give in my recovery I have reached a plateau and unfortunately about 5 days ago I believe I had a setback and if I'm not feeling better by tomorrow I will be checking into the ER again. In my study of the disease what I have learned is the reason for the long-term pain and for the low-level damage which is being done to the heart is because the spasms do not concentrate on single arteries a spasm will pinch off an artery and till that section of heart begins to hurt at which point the artery will turn loose in a different artery will begin to pinch off only when you have allowed the attack to advance so far that multiple arteries are being closed at the same time will you reach the point of a stemi any elevated T wave on your EKG is a prinzmetal attack the worst is the elevated T wave that they call the coffin wave both because it is shaped like a coffin and because it often leads to a coffin. Should you by Nature avoid this point then you can end up with larger arteries beginning to close off and your stemi then becomes a transmural infarction in which case the bruise has burned its way all the way through the heart I've had at least one of these they're the hardest ones they hurt the worst. It is wholeheartedly and humbly I suggest that you chase that lipid profile to the ends of the Earth you may find your answer there I will found that the cardiologist are baffled by this disease they don't understand in the only thing that I have found that is common in all studies is calcium and acetylcholine those two things are the two most fatal things to those with our condition so look for it everywhere look for it in your diet look for it in any medication you take now remember that milk is cerium calcium it is Different Serum calcium is required for us to survive its what bills are bones its molecular calcium that you need to avoid calcium supplements anything like that and as far as Nitro tolerance goes I'm fortunate that I still haven't reached that point I'm still using .4 mg sublingual and taking 40 mg in the morning and 40 mg at night of isosorbide it seems to generally dull the attacks the calcium channel blockers strong enough to actually stop my heart and then the pacemaker that seems to be what has actually brought the most relief that I have received I would ask one of your cardiologist to look into this solution and by all means I will continue to pray for your recovery.

Hi Bishpick,

?I've had the endoscopy and nothing found, GTN also helps esophagus spasms, it was also used once for indigestion (associated espohugus spasms). I'm awaiting another endoscopy just to make sure there is still nothing out of place in that area. I have had reflux since early teenage years.

?This is how one of my cardiologists explained my condition, diagnosed by him as prinzmetal angina, He was saying what is happening is that because of my weird lipids , they, the cholesterol was eating / absorbing the nitric oxide in the endothelium, with out this or the correct amount of nitric oxide the arteries go into spasms and causes so much grief. My regular cardiologist is only just slowly turning the corner about agreeing to  the prinzmetal angina diagnosis due to this explanation given to me by the other cardiologist that looked after me when I had my first NSTEMI. Even though my cardiologist is good, he's still a bit green behind the ears in my opinion he's only  36-37 years old and I'm lead to believe he's head of our public health systems cardiology department, the cardiologist  that agreed with the diagnosis of prinzmetal is a lot older 55 + years old and is an associate professor of cardiology, figure that one out  eh, they both work in the same department yet the youngest one is the boss, perhaps the older ones don't want the stress of the top job, who knows what their reasons are   my retired cardiologist was a professor and head of cardiology in the public health system, he was the one who first diagnosed the blood vessels in the heart going into spasms all them years ago

?My GP seems to have a grasp on prinzmetl angina, he tells me that you can't die from prinzmetal alone, something else has to be present with it, like in my case the NSTEMI's and artery blockages, from the way you are describing things you may have heart issues as well and the prinzmetal is only secondary ? I'm on 120 Mg's on isosorbide, (monodur, Imdur) taken once daily. My heart always feels like it's going to stop I'm bradycardiac, I have a heart beat of 44 .

My brachycardia made it down to 30 beats a minute before they put in a pacemaker. whether or not prinzmetal can directly kill you I would tend to argue with one way or another my first prinzmetal heart attack when the angina actually shut down my heart I was 30 years old and I don't even really remember the heart attack I just collapsed my second one which was a full-blown stemi that one was very painful and at about the age of 40. the the next time the angina pushed me into a full heart attack it was a transmural infarction which took almost a week to develop and was the most painful experience of my life. directly following that still not knowing exactly what was wrong I began having cardiac event every two weeks which were bad enough to hospitalize during the next 18 months I had two maybe three moore stemi's. Then in March of this year I got tired of the cardiologist arguing over the decision of diagnosis and ambulance pick me up with a rather drastic attack and I told him not to treat me until I got to the hospital. Which he reluctantly agreed to fortunately that led to one of my cardiologist doing the catheterization discovering that my entire heart was squeezed down and locked in a spasm. that's when the brachycardia became rather drastic and some sort of treatment became an absolute necessity and the diagnosis could no longer be denied at all. so which can get you first the secondary disease or the primary actually it can be either my CLL is actually in remission at the moment and when it is active it's usually on a stage 1 level however it is fully cd20 negative which gives me all of the calcium problems that I would have of someone who's cll has already progressed to Richter syndrome. my worst angina attacks last up to a solid week and there's only so much of that the heart can take but it sounds like your doctors have a very firm grip on yours process I pray that they stay on top of it but in case you didn't know morphine will stop an attack if it comes to that if the Nitro won't work the morphine will that's documented so your doctor should already know that.

Hi Bishpick,

?I wouldn't say my doctors have a grasp on my condition they can't even  agree on each others decisions, like I have said 2 say, yes prinzmetal angina, then,  2 that say no , Then I have the other doctors to contend with, my retired GP wasn't convinced it was prinzmetal angina, I use to suffer from panic attacks and because I have had an official diagnosis of that, every single thing that can be tied to it , is. the panic /  anxiety label sticks with you for life, even with my NSTEMI, As I said my retired GP is no longer in the picture I had a replacement GP offered in his place, I agreed to take on her services, our very first consult didn't start off to well, she was a young GP and she came straight out with it and said , No, look I think it's your anxiety acting up again, she said sure you have had a heart attack but any one could have one on any given day, well we all know this don't we, but that's not the point, we are talking about our own health with our GP's, they need to learn to listen to their patients more, we know our bodies best, sure they know the workings of the human body but what they fail to remember is , just like a car, let's say an exact model from the same factory floor built 2 minutes apart, those 2 cars will not run the same or even feel the same, this applies to humans, just because they can't find proof they put it down to stress, anxiety and the likes. My second consult with my new GP she called me a liar, she said I was a "drug seeker" (pain relief) I was on endone for the spasm pain, she didn't like  it and refused to prescribe them to me again, she also took me off my alprazolam (Kalma) for the panic disorder and persevering agoraphobia, I had been on the for 20 + years, she undid those 20 years in a day, I had rebound anxiety, within a week I was house bound again and into our emergency department because of her stupidity.

?I know have a new GP, I explained to him what had happened between my other GP and asked for his professional opinion, he shook his head in disbelief and said let me guess, it was a young GP that changed or took you off your medications. After getting his opinion I asked if I could be put into his books , he took me on and has put me back on my Alprazolam and endone, the endone does keep me away from the emergency department, the use of this drug I know is not really ideal but nothing else has worked, with the exception of morphine and that is from the same family as endone, well so I have been told. I only go to emergency now if the pain hasn't responded to the second endone within 2 hours of each other, I'm suppose to do it after the first one but I'm sick and tired and embarrassed to go in.

?I have mentioned this to everyone in concern with my health care plan, what I experience is exactly the same as when I had the NSTEMI , I can't differentiate between the attacks, they are the same, hence, why I have to have a single troponin test when I present each time. All the doctors thoughts and what they think it could be is documented, it's just that not all doctors agree with each others diagnosis and add their opinion into the notes to further confuse others down the track. I'm sure you know how it is with doctors, cardiologists are the worst ones for in house arguing . I've overheard  a few things since being under our cardiology.

?Can I ask you this ? Can you feel your coronary artery spasms ? I mean literally, not just the pain from them. I am nearly 100% I can, I call them flip flops, but they don't feel like palpitations, the pain increases to 10/10 on the pain scale, after it's finished whatever it is doing and will return to it's baseline pain level, for me is usually 6 when GTN isn't successful. GTN will assist only for anywhere from 1 minute to 5 minutes and then the pain is pretty well constant and like there's an elephant sitting on my chest.

?I have found that nearly all emergency doctors believe prinzmetal angina must be present on an ECG and if nothing shows in that or troponins come back normal they say it's not your heart, they write this down in your files, cardiology do their testing, everything comes back normal , they then write what they think down and it goes into my files. I have to be stern with my cardiologist now, I'm just sick of the run around, somethings going on in there, it's not anxiety and they know that now since the heart attacks, so that label has now been removed. My cardiologist as I said is young and green behind the ears, he actually has matured quite a lot in the 12 months since I last saw him, he's starting to believe it maybe coronary artery spasms now, I think he has been out voted now, can't say for sure but he is approaching this differently from before. They have me in the "to hard basket"

I can understand you're flushed stration when things got really bad for me was when my head cardiologist decided I was psychosomatic. he stood at the foot of my bed and told me that if I had been hurting as long as I said I had then I would have already been dead 10 times over. he ended up calling in a psychiatrist on me and I spent one year on psych meds until I finally got a psychiatrist that told my cardiologists it wasn't me that was crazy. I can say that I certainly hope that your doctors begin to agree and that you find a successful treatment I wouldn't wish the treatment they are using on me on my worst enemy. the one thing that that 18 months has left behind is I am terrified of sleep. During that. I was woken up every morning at 3 a.m. you could set your watch by it was within two or three minutes every morning in a full attack. I got to where I wouldn't go to sleep until after 3 a.m. after March when they finally got pictures of my heart in full Attack Mode my cardiologists came to my hospital room and actually apologized to me. I'm sorry is not two words I thought cardiologist new. but what it has done is giving him a new vigor and trying to figure out how to treat this disease. he has said that what we're using now they hope will last for years however he is preparing for the possibility that the treatment will have to continually change to keep up with the continually changing disease. Only recently have they started looking at the comorbidity issue of the multiple diseases of all of these posts that I have read of all of the people I have spoken to that know of or have had or do have rather prinzmetal either angina or syndrome I have noticed that multiple life threatening diseases is the common Norm not the exception to the rule. only when I pointed this out to one of my cardiologist did they suddenly have an interest in the co-morbidity issue. it was my oncologist who LinkedIn the calcium cycle that is actually been one of the biggest improvements in my health since all of this began. what seems honest about it all is I meet some people like you who Nitro tolerance is an issue that is coming down the pike and people like me where calcium channel blockers are maxed out on dosage and a few calcium channel blockers will actually work. for example amlodipine only worked on me for about 6 months now that I'm on Verapamil I've been on it 8 months it's still working but in the last 2 months I have had a few more attacks get through then I did in the months before. my biggest concern with the secondary disease is the CLL oddly enough it's not the CLL itself that is the issue it's the infections that the CLL refuses to allow my immune system to fight which put stress on my system and makes the prinzmetal angina get worse and return it it's like a vicious cycle sometimes sometimes all we can do for each other is say yeah I know it's frustrating and I pray that you have at least as good luck as I've had so far and I certainly pray that you have better luck than I have had so far and that your treatments are all successful. I'm not really sure that anyone of us that has prinzmetal's has had the same experience with the disease I think that's the source of the frustration for the patients and the Doctors. be strong and I'll be praying for you

Hi Mike - Molly here.  I did send you two pm's, but they did not show up, so must not have pressed the right button...!!

Yes.  Have been right ill.  Thrombosus and phlebitis in lower left leg.  Bit of the thrombosis broke off and I suffered a pulmonary embolism.  Taken by ambulance to Carhaix hospital in agonising pain.  Carhaix hospital sent me home - nothing showed up on ECG, X-ray clear and all vital signs normal.  Embolisms don't show up on ECGs...  Was sent home with a Dx of costochondritis.  Ho-Hum.

Was home several days feeling like crap, very dizzy and breathless.  Started coughing up blood !  GP away, so went to stand in at Guingamp Hospital - with (revolting) sputum sample !  By this time I was *also coughing like a nanny goat - severe bronchitis had stepped in.  Showed the woman doctor my leg, told her all about it.  Was then rushed to ER section with 'strong suspect' pulmonary embolism !  Stayed in Hopital du jour overnight, then nxt day was moved to in-patient : ten days.  Own room.  Series of tests : Doppler revealed DVT behind radial artery together with additional small clots in small veins, together with superficial phlebitis (this last is permanent residual damage from contrast dyes from 2013 !).  X-Ray showed the clot in the lungs.   Fab nursing staff, and a great 'about to do his finals' interne.  Warfarin; Heparin; inhalant; oxygen; pain meds as needed; TOTAL bed rest - and my nitro to hand together with my glaucoma drops.  Was well looked after.  

Almost too well looked after as, had taken up a kindness from a good friend to go visit for convalescence.  I must have been the visitor from hell !  Blood tests every other day, day *one revealed that my bloods were sky high at 8.79 (normal is between 2 - 3).  Hospital trying to getta hold of me.  Doctor ditto - he had mislaid my contact information !  Finally, the gendarmes (police) were sent out to find me.  Friend and I were out shopping, got home, to find police ensconced with coffee with mine host.  I had to go *URGENCE* to nearby hospital as was in a serious medical emergency - for a mammouth bleed out, brain or otherwise.  Ho-Hum.  get my overnight grip together and depart forthwith, 40 mins drive away.  Fantastic full moon making beautiful patterns with the clouds in the sky.  Strayed overnight in hospital, went home next day after another blood test and instruction to stay off the Warfarin.  Bloods finally came down, but...

Strewth.  Gotta larf though, innnit <LOL>  But HUGE thanks to long suffering friends who patiently looked after me and deserve medals.

So, here I am.  NO bleeds - though the nurses at the centre doing bloods like no tomorrow explained that I was lucky.  They had had two deaths from Warfarin bleed outs just recently, and the other bloods were nowhere near to my 'orrific' readings !

PM behaving fairly well.  Though with other stuff going on, can get a bit confusing as to what is causing what...!!  As of yesterday finally back home, but been away for some three weeks odd - mebbe a tad more than the three.  Tired, get breathless easily, but glad to sleep in my own wee nest.

Help, this is way too long.  But thanks Mike for your concern.  Will cover your own concerns in next post.  Bless to everyone, and take care - Molly 

                                                                                                                                                                                                                                                                                                                                           

Hi again Mike - third time lucky.  Laptop crashed, errors etc etc.  T.G.  I saved my response OK...

Hi Mike - Did respond to yr pm's to me, but must have pressed the wrong button - or not pressed it at all...!!

Now.  Verapamil, an anti-hypertensive.  Side effects include : dizziness; constipation; loss of appetite; loss of taste.  Check out for additional side effects with drugs.com.

You don't need Omega 6 or 9.  Omega 3, yes.

Reckon overdosing on L'Argine.  5gms is a lot.  Two standard sized *flat teas per day, slaked of in water.  One teas a.m. second teas p.m.

Amlodipine half life :-  

The terminal plasma elimination half-life is about 35-50 hours and is consistent with once daily dosing. Amlodipine is extensively metabolised by the liver to inactive metabolites with 10% of the parent compound and 60% of metabolites excreted in the urine.  Amlodipine 10 mg tablets - Summary of Product Characteristics (SPC ...https://www.medicines.org.uk/emc/medicine/25861

It takes 5.5 elimination half life's for a medicine to be out of ones system. Therefore it'll take about 11.5 days (5.5 x 50 hours = 275 hours) for it to be out from your system.May 28, 2013

How long does it take for amlodipine 5mg to work?

Accumulating Antihypertensive Effect. In general, any drug reaches a steady state concentration with consistent dosing after 3 to 5 half-lives. The half-life ofamlodipine is about 30-50 hours, meaning that “steady state” occurs between 4 and 10 days after starting therapy.Mar 23, 2013

So, if you allow 5 days for the Amlodipine to leave the body, then 5 days for the Verapamil to take over, you are looking at 10 days.

Please check this out - Verapamil, drug interactions :  https://migraine.com/migraine-treatment/verapamil-for-migraine-headaches-prevention/drug-interactions/

I am most concerned at yr taking L'Arginine WITH anti-hypertensive medication.  Please discuss with your GP or cardiac health provider.  You are ALSO on aspirin - shakes head with concern at possible pharmacopia...  Combinations of drugs can not only be counter productive but, can also be dangerous !  Now, add in *alternatives to the mix and ...    

Plus that Bromazepam - Hmmmmm :-

Check with your doctor as soon as possible if any of the following side effects occur:anxiety.

behaviour changes (e.g., aggressiveness, agitation, unusual excitement, nervousness, or irritability)

confusion.

fast, pounding, or irregular heartbeat.

hallucinations (hearing or seeing things that aren't there)  More items...Mylan-Bromazepam - Uses, Side Effects, Interactions - MedBroadcast ...www.medbroadcast.com/drug/getdrug/mylan-bromazepam

As you can see, all too much of NOT a good thing.

As for the four week holiday in S.E. Asia - please get meds sorted.  Buy yourself a upper cuff BP monitor - Omron is pretty good.  Costs about E.75 here in France and about £45 in the UK.  NOT the wrist ones which are a total waste of time and money.  Taking BP.  Three times EACH arm, allowing 5 mins between each 'take'  (I alternate, left arm, pause, right arm pause).  Do this twice a day, a.m. and p.m.  Try and keep to same timings.  Having got yr numbers together, take an average for each set of three, so will have two numbers for the a.m. and two for the p.m.  Keep a record.  Give to GP / Cardi on yr return home.

Remember to take ALL meds AND prescriptions WITH YOU, PLUS a letter signed by yr doctor - must include his address and ALL contact details, including e-mail..  S.E. Asia are red hot to interrogate and imprison travellers for what they term 'infringements' of *their drug codes !!

Take care - go well -

Molly

My reply to your own concerns is awaiting moderation.  Posted up a couple of drugs information.  Mebbe not permitted ?  Dunno.  But do have a saved copy of.  Will wait and see.

Take care.

Molly

Hi No More Scuba,

?Just home from our emergency department myself, I will have to find what I have done with the paper I found yesterday, day before in regards to Prinzmetal angina, it stated that the  medications prescribed for "normal"  angina is very common not to be effective with coronary artery spasms. I have had lots of trouble with  mine the last week, even though the levels are relatively low but still positive, my troponins have been coming back raised every single time, it peaked at 49 before dropping down to 15 over a period of around 10 days, I felt like I had been hit by a bus, after the first lot of chest pain, my very first troponin was 22 and crept up to 49 over the next few days. Depending on which doctor I saw they all had different opinions on the troponin rise, 3 doctors were concerned but the consultant (their boss) made the decision that nothing was occurring, the other 2 said the rise was not cardiac related, I'm scratching my head with these 2 doctors, troponin is a heart specific enzyme and is released when the heart is in distress or having a heart attack, I know there are other conditions that can raise troponins but everything checked out in that area, no infections, kidney functions were normal, etc  etc , I was diagnosed with a pulmonary embolism around 9 months ago, I didn't present with the text book symptoms for that, they found heaps of blood clots in both lungs, was put onto blood thinners but my cardiologist wants to put me onto warafin as he informed me that the current medication I am on isn't suited to the type of PE I had suffered and the fact that there is no antedote for the new NOAC's, by that I mean if you cut yourself, bump your head or even in any kind of accident they say they can't stop the bleeding like they can with the warafin, I don't know all to confusing for me. My troponins are acting up again today, first trops came back at 32 and repeat came back at 31, I was discharged 2 hours ago.

?Now in response to your medication questions, have you ever been tried on Diltiazem (Cardizem) in high doses ? I'm on 600mg's daily. It did work for me for awhile but as my retired cardiologist told me, my body would build up a tolerance to all the nitrate based medications. Also I was put onto Pexsig (Perhexiline) 200mg twice daily, this also worked but only for about 6 or so months, I believe only Australia and New Zealand are the only 2 countries that still prescribe this medication, other cardiologists from many countries don't prescribe it because they believe it can be toxic to the liver, you have to have regular blood tests with this medication so that they can adjust if any signs of toxicity and also to see if you are at a therapeutic level, I wasn't so they had to bump it up another 100 mg's. Sounds like they are trying you on various type of medications to see which one will actually work or at least reduce the frequency of your spasms.

?In regards to your question about travel, that would be something to discuss with your cardiologist, if he/she is ok with it, it then comes down to how you feel about it, if it will put to much stress on you, is coronary artery spasms your only issue or do you have other cardiac problems that would prevent you from going ? I find opiate based pain killers stop my pain dead in it's tracks, I know it doesn't stop the spasms but at least the pain has been removed and I can get some much needed sleep or continue on with daily living.

?I am the same, lifting shopping bags, push ups, exercising can bring on my attacks, not all the time but it has happened. I do know cold weather is a big trigger for prinzmetal angina as is high emotional stress, a quick puff of wind to the face can trigger it off. Your GTN usage is mild compared to mine, in my bad attacks I can have up to 20 sprays, after about 6-8 sprays it has become ineffective and only lasts between 1-5 minutes before I have to have another squirt, the GTN patches never worked for me, or nitrine patches as you call them, an emergency doctor put me on them but my retired cardiologist told me to throw them in the rubbish bin, he told me that they don't work with spasms. I would imagine you might feel a few strange things when medications are chopped and changed around for awhile. I have never tried L-Argenine? and it has never been mentioned to me, however, I have read that it has been working quite well in a lot of prinzmetal angina patients.

Hi Molly, Samuels et al.

Firstly I'm really glad to hear you are both relatively better now and firing nearly on all cylinders.

This is a lengthy post so I apologise in advance but I have loads to say/ask.

Thank you both for the very informative replies. Samuels I am again sorry that you are still in such a flux over your health and treatment. Compared to Molly and yourself I am feeling quite lucky in that as long as I don't do anything, (stay at home, stay warm, don't eat or drink too much), I can have relatively pain free times having only mild spasms each day which at the moment the Spray under the tongue takes care of for a few hours. BUT considering how active I was just 4 months ago, I feel like I'm in prison!

Thank you for all the links to the various info concerning my meds.

My GP was at first loathe to change from Amlodopine to Verpamil but agreed in the end. I am not sure though if 120mgs per day is enough. Also she told me to keep regular checks on my pulse and ensure it doesn't EVER go below 50 bpm, normally I'm 60-75.

The Bromazepam in very small doses is an anti anxiety pill that I have been told to use which is supposed to stop the adrenaline flush 'fight or flight' rush that most people get when surprised or shocked, for instance by a loud bang or someone creeping up on them. I get it much, much more frequently examples, the phone rings, someone knocks on the door, someone talking to me when I am not expecting it and lots of other minor things like that. The Sympathetic Nervous System, when in overload like mine seems to be, can cause Vasospasms by reducing the interior thickness of the arteries and therefore limiting the amount of Nitric Oxide they can produce to ensure they stay dilated.

The high dose L-arg(10grms per day split in two doses) was found by Mercy Hospital USA a DR Glueck, to have dramatic effects on the amount and strength of spasms in everyone of his test patients from a study in 2012. Also there are good results from a recent trial by a  Microbiologist on vasospasms and L-Argenine as well as a few other trials for various other vasospasms such as in the kidneys etc., all very recently undertaken and so not really well understood... also they are all in English, which may mean our French guys (Molly and I are in Brittany in France), and gals haven't had all the info yet. I am in touch on a Yahoo Prinzmetals group with one of DR Glueck's patients and also another person on the same Yahoo group who is taking 10gms L-Argenine, (split into two 5gms day and night), as well as Verpamil and something called Imdur slow release just before bed to replace the Nitrine patches. She is practically spasm free BUT also keeps an eye on diet etc.

MOLLY - hopefully a Christmas pressie is to be an upper arm BP machine, preferably one that can download all results to a programme on my laptop, (There is a wireless one which works with phone apps but I don’t use a mobile phone!) You mention fizzy drinks, sugars, gluten etc. I have cut right down on those but doesn't seem to have made any difference, however another person on the Yahoo Prinzmetal group who has had this for years and years says that sulphites and sulphur in her diet are the biggest triggers for the spasms and has spent 20 years bouncing from one doctor to another before they have finally agreed with her and she is now a lot more stable but she states that her daughter died from Prinzmetals/CAS just a few months after discovering the sulphur allergy. She says her daughter had the constant loud ringing inside the head as one of her symptoms.

I note Molly that you say you are particularly worried about L-Argenine with Verpamil but I can't see any contra indicators anywhere and I know of people taking those in Canada and the USA in combination, they do however use alternatives to the night time nitrine patches. Can you give me more info on that and would it be better maybe to use a different kind of calcium channel blocker along with L-Argenine and L-Citrulline. (L-Citrulline apparently helps L-Argenine to produce Nitric Oxide).

 

Molly do you think I would be better of going back to the other type of C Channel blocker, maybe not Amlo but something of the same class whilst I am trying out the high dose of L-Argenine and L-Citrulline?

Also can I get Omega 3 tabs that do not have the plasticy coating which has sulphur in its manufacture?

Nicotine!!!!!!!! I know you are right molly! I have come from 25 per day to between 3 and 6 per day depending on stress levels. I am giving up BUT it's taking time. I'm feeling sorry for myslef, no more active life, no more odd binge nights with mates or 'aperos' with my French neighbours, no more jogging, no more hiking up hill and dale,  no more climbing, no more abseiling, no more scuba etc...... AND then the only thing left other than lounging on a sofa is to go and stand outside for a 'ciggy'.... it is difficult mates!

 

Samuels, I’m a bit worried about how much GTN/Nitrine spray you use. If I had to have 20 sprays a day my head would blow off!!!! It is strange that your doc told you not to use the patches. Before I had them for night time use I was having spasms twice each night at rest and more dangerously in my sleep. Since wearing them at night I have yet to have a single spasm whilst wearing one.

 

Also there are people on the Yahoo Prinzmetals group who also say that sudden changes in temperature, especially warm to cold can instantly bring on a spasm. Maybe that is something mechanical rather than chemical. What I mean by that is that it makes one constrict the chest, as in shivering, and keeps the chest muscles tightly squeezed whislt cold. What do you think of that, particularly with the examples of other mechanical chest constrictions such as press ups, sit ups, carrying weights/shopping bags etc. Do other forma of none chest muscle restrictive exercises cause you spasms, if not which ones can you use for exercise?

 

Well that has probably bored you all to near d…… whoops, shouldn’t mention that.

 Thanks again Gals n guys, stay in touch, Mike.

Hi No More Scuba,

?Ok here's what my retired cardiologist had spoken to me about, Dietary wise everything today bought from a supermarket is bad for us, moderation is the key, in regards to vitamins and supplements, if we eat and drink healthy enough we get all of this from our every day meals and these vitamins and supplements would be of no value, however, not everyone eats the same so in my opinion they do have their place for us humans. I use to own a hobby farm many years ago and we pretty well much lived off the land with the exception of beef and lamb, the hobby farm wasn't quite at the stage to run beef and sheep on it, we would buy lamb from a local farmer cheaper than at any butcher or supermarket, we bought beef cuts as we needed due to the high costs of buying one and having that extra space in a spare freezer. at the time no one, friends or family, were interested in going halves or thirds in a beast. Even buying off a local farmer you run the risk of buying contaminated meat, by contaminated I mean the chemicals that modern day farmers now use, also the highly concentrated chemicals in keeping the steer in top health, I.E  worming, they have a meat with holding period before slaughter for human consumption but in all honesty I don't really trust that, especially highly concentrated chemicals running around their bodies, it can't be good for the animals and humans, A lot of farmers will spray their paddocks with weed killer spray in preparation for their quarterly / annual cash crops, once paddock(s) have been sprayed and the grass/weeds have turned to stubble the farmers will run in stock, either cattle or sheep to get a feed before they till the dirt. This must have health complications on both the animals and us. We do have organic farmers here but in a recent study even organic isn't as organic as what they advertise, take the chickens for one, they apparently eat free range but the "organic" farmer supplements their food with pellets and they have anti biotics In them, I haven't heard of anti biotic free chicken pellets, but just because I haven't heard about them doesn't mean they don't exist, I honestly don't know. What I'm trying to convey is even though we think we are eating healthy, are we really ? what really is in our natural grown produce, whether it be farmed on a large scale and the chemicals that the farmers use  through to the organic farmer that claim their produce is far more healthier, but, is it really ? we don't know what has leeched into their grounds 2-200 years ago either dormant or still active if recent, know what I mean ?

?Australia is a long way behind in prinzmetal angina, I think it is only skimmed across in med school, I have had several young doctors ask me "what's prinzmetal angina" the older doctors know about it and treatments available but like everywhere they all have their own opinions about this condition. Yes nicotine is a trigger but as you know not the only one, anything with caffeine in it, that includes tea, although now they are saying drinking coffee can reverse/prevent  certain heart conditions. Illicit drug use is the biggest cause of coronary artery spasms, especially cocaine.

?I'm with you, I have no idea behind my retired cardiologists reasoning for throwing away the patches, all I remember him saying is they are useless, he did tell me for what reasons but I can't honestly remember, I don't want to be guessing as it would most probably be inaccurate. My head did feel like it was going to blow off when I first started using the GTN spray, oh and the biggest headache, but I have just built up a tolerance to  it, it doesn't even move my blood pressure anymore. I'm not to sure about the muscles tightening up in the cold, I would imagine you would feel the muscles tense up in that kind of scenario, something to which I have never experienced during a spasm attack, It just goes straight into spasm mode, I know what you mean, I have felt this under normal circumstances, the chest muscles  tensing up to compensate for the shivering. As for exercises I have only found push ups, sit ups and carrying heavy items  with the arms, not picking up and folding arms in to carry, for example I have no problems with bringing in a nightly arm full of firewood  and other things that are carried similarly.

?I nearly forgot to mention, yes watch out for the slow heart rate, mine fluctuates between 40-49 bpm, that has been put down to the calcium channel blockers that I am on, we have discussed a drug "holiday" but my current cardiologist doesn't want to go that way again as we had tried it before and my chest pains were more severe off the medication. I wanted to try this drug holiday, especially the calcium channel blockers, I want to see if my heart rate picks back up to the right range for my age.

Also I know all to well how hard it is to try and give up the ciggies, nicotine is the most addictive drug known to man, it's more addictive than cocaine.

Hi molly,

?My experience with having home blood pressure machines is somewhat mixed, I have been told by various emergency doctors and as I suffer hypercholstrademia amongst other cholesterol conditions, high blood pressure and type 2 diabetes, my health carer in the diabetes area recommended that I get a blood pressure machine but my GP advises against it because you can actually give yourself false readings caused by anxiety, and in time when you start to feel unwell you will start taking your BP more than twice a day, something that is not psychologically healthy for us, according to various doctors. I don't know if you knew this but 9/10 your blood pressure will be higher than normal while visiting your GP, they call it the waiting room jitters, even though we don't realise it. After awhile your GP will get to know your baseline BP, either high or low. But overall your GP takes into account the waiting room jitters.

I forgot to mention about metabolism, I was put onto Perhexiline for my coronary artery spasms/refractory angina and because it's not a widely used drug due to regular blood testing, blood tests showed I was metabolising medications at a fast rate of knots.

Hi Samuels - I do not have 'White Coat Syndrome' !  BP numbers are always interesting.  There is a right way and a wrong way to take.  Three times each arm.  Then take the average for each arm, then the overall average.  Do this twice a day.  Try and keep to same timings.  BP levels change and change about all the time - much as IOPs do (intraoptic pressures).  Time of day, meal times, exercise taken etc etc.  Then add in stress and so forth.  Need a quiet time to take BP, and keep regular pattern.  Keep all yr data.

A good cardiologist will take three times each arm both sitting and then standing.  Seems to take forever.  Just switch off.  Monitor must be upper arm.  Can get a programme to feed results into yr computer.  Me, I just note mine down.  (I have alarming spikes : anything from 102 / 65 up to 227 / 107.  Though usually sits around 149-165 / 85-98  OK for my age.  No probs with my standard levels, but the spikes can be alarming...!!)

Nowadays, hypertensive patients are advised to buy a good monitor and keep a record - keep for three days running; NOT everyday for weeks on end.   Do this monthly, then every six weeks or so.

Yes, *some people get obsessive over taking, but they soon learn the total boredom of doing...That soon cures the 'gotta know NOW' outlook <VBG>

Take care -  Molly

Forgot to say - waiting for GP to take BP once in a while is pretty pointless.  Insufficient data, and, as mentioned before, BP levels are usually changing.  Need to take twice a day, three days running every month to six weeks or so.  See recommendations from Leicester Hospital and also see NICE recommendations.

Molly

Sent you a PM on this, but putting up here for general info etc.

My own really BAD spasms were brought on by the cold - all three about this time of year as well.  Ho-Hum.

Finish with the ciggies - thoug you are doing great to get down to 3-5 per day from 25.  Good going.  Kudos to you.  Remember though, that once addicted, the temptation will always be there,, NEVER give way to it.  Highly dangerous.  Bloody expensive as well...

Omega 3 DHA / EPA.  Try Livestrong.  Also bigvits.uk   Both are reliable suppliers.  Will have to search out what you want. iHerb used to be great, but are now adding in hidden costs !  Be warned.  Greedy stinkers.

BTW you can drink.  Just NOT too much.  NO binge drinking.  A couple of glasses of good wine, OK.  Small whisky, OK.  Not every day, so keep for weekends.

Remember NO fried foods, chips and such, and NO industrial packaged foods.  For spaghetti, try quinoa, makes for an excellent bolognaise.  Make sauce from scratch.  Learn to read labels - fun in the supermarket !!   Can while away hours reading labels - keep clear of the frozen sections though <VBG>   For any frying, do not use polyunsaturated oils - as in fried eggs. Use coconut oil - get from the BioShop :  Carhaix have a good BioShop (Guingamp one is useless).   Do NOT use any form of margarine or spreads.  Only use good butter.  LeGall crue is good.  

Keep to organic / Bio as far as possible.  Try the farmer's markets.  Good shopping at markets.  Many items organic.

Remember not to use olive oil for frying.  As, with the heat it changes the molecules and becomes NOT good for you !

Keep starches to low.  Eat good fresh greens - spinach, kale, cabbage, etc etc.  Sauerkraut is excellent for you - if you like it.  Buy, eat as is.  Don't go cooking it up.  Can make yr own.  

Sulpher / sulfites, yes, bad.  Many foods are preserved with the blasted stuff.  Even raisins and currents, apricots and dried fruits.  Horrid.  GOT to read labels.  No two ways about it.  Oh yes, MSG - NO NO NO.  Entirely bad.  Eschew the ubiquitous Chinese - shudder.  And, those nasty gravy granules. More nastiness.  Simple to make gravy from scratch - simple a delicious to make a decent gravy.

Right.  Enough of a lecture <LOL>

Take care Mike - 

Molly

 

Samuels - here's yr NICE guidelines - as for the note 'every five years' gotta laugh.  Otherwise reasonable input.  Leicester, google up, Leicester Hospital blood prressure guidelines.  Many links.  There is a really good monitor available, but darn expensive.

As you will see, both NICE and Leicester rrecommend both arms, sitting and if any hypotensive, then standing.  Marry the two lots of info together, and a reasonable way forward.  Also noe, home monitoring and a 24 hour monitoring, Holter.  Better 48 hour, 24 is really insufficient.  Need to catch the AF - if that happens.  (I get AFm but intermittent.  Need a 48 hr Holter monitor.  Might get from new GP.)

OK.  Over and out -

Molly

Stinks,, forgot to put up the NICE link -  https://www.nice.org.uk/guidance/cg127/chapter/1-Guidance#measuring-blood-pressure

Molly

Hi molly,

?I just don't worry about it, as I have said some doctors agree and some don't, you know what I mean , you know what doctors are like. My GP and cardiologist are good, they do it by the book, well the cardiologist does, GP does cheat sometimes, he keeps a regular check on my BP I usually run on 140/85 ( Ok but borderline for my age ) but have been known to sit on 170/90 and that's with a system full of GTN sometimes (roughly 16 sprays) at the time of paramedics taking BP before transporting to our emergency. I have actually witnessed this, although it's a lack of understanding I think between patients and their GP and I see it a lot in the elderly when I myself have to go into emergency, because emergency departments are always busy there is never any privacy between triage nurse. doctors and patients due to limited space, the young get confused and panic at their last reading if it's to high or to low, as I said probably lack of understanding between them and their GP, then the elderly come in they have taken their BP medication at their normal time , then done their blood pressure before going to bed and get alarmed if it's up or down, I have heard some elderly patients say they have forgotten to take their BP meds and their blood pressure  is low so they come in to emergency at all early hours of the morning, the dear gentle souls they are. the triage nurse takes their basic BP and tells them it's fine, they are never turned away, because as you know things can and do happen. I agree it's a matter of, well, for a better word, training is the key, people need to listen carefully to their health care professionals so that self taking of BP is done correctly and not at times of stress, well you know the drill  

Hi No More Scuba,

?I forgot to mention the other day about nicotine, if your trying to give up the ciggies like me, I see you have cut down, I can't go cold turkey, that's how addictive the nicotine is or shows how week I am which ever way you want to look at it. Now what I forgot to mention is don't use nicotine replacement therapy (NRT) it will almost immediately bring on the spasms and all the other kinds of angina. Cardiologists don't generally recommend using NRT here for that reason, you see it's pretty well much "pure" nicotine in a reduced dose to try and aid in withdrawals. Every doctor I have seen or spoken to about it inform me that it's my choice but be aware that it will trigger angina attacks and it does, even the gum triggers mine. Our hospitals and quitline ( our smoking cessation assistance program down here) don't endorse or encourage the use of these E cigarettes as there has not been enough studies into them to determine if they are indeed safe, I'm sure it's the same all over the world, have you heard the term " Vaping " ? people abuse them or use them as instructed, but I have heard a lot of people talk about how they enjoy this vaping, now I don't know if this is good or bad, I haven't looked into it's actual meaning.

"My GP was at first loathe to change from Amlodopine to Verpamil but agreed in the end. I am not sure though if 120mgs per day is enough. Also she told me to keep regular checks on my pulse and ensure it doesn't EVER go below 50 bpm, normally I'm 60-75."

My doctors solution was 360mg of Verapamil and a 3 lead pacemaker. No serious spasms for 9 months. My two worst enemies now or stress and sudden humidity change. My Nitro intake is also been dropped a BUNCH , i can make a 24 pill bottle last up to 2 months now ( 1 month till I have to open it, 1 month till I have to replace the bottle). I'm not saying it's the solution for everyone but it took the rest factor completely out of the equation. Finding Triggers and minimize exposure is the goal now. I have the audacity to hope to return to a semi-mormal life over the next 3 or so years.