prinzmetals angina

Oh dear, Oh dear.  What a saga - only in France.  In the UK they would be only too ready to throw you out, willy nilly, and use the bed 12 hour turn around 24/7...!  

Errrrmmmm.  Not really intent on going in just yet !   Will try and give you warning though  <giggle>

How did you get on with the cardi in the Carhaix practice ?  Was it he who sent you in to Brest ?

Take care Mike - if weren't so pressurised I would come visit the sick...or, not so sick but surely sick and tired of opitals !!

Molly?

Hi Molly, He was a little like you said. Possibly he was having a spat with the head guy at the hospital because when I spoke to the heads intern at Brest he asked why I didn't go to Carhaix where the head was and I would have been better able and faster to make my point to him and perhaps have the scintigraphie much sooner. I now know why the two secretaries at the clinic were having such a heated debate about Carhaix and Brest.

I told him Corbel insisted I go to Brest. Not quite sure if I'm being used as piggy in the middle here???

Anyone out htere had one of these cardio scintigraphies?

My better half has cut short thr UK trip and will be back on the boat on Tuesday nigt and so she will be with me Wednesday afternoon which at the moment feels like years away.

Cheers, Mike.

Have had a scintagraphy, but not cardio.  Nuclear scintagraphy for checking on replacement shoulder and continuing shoulder problems.  Injection of nuclear substance.  Mine was into the foot - bloody painful.  Fumbling nurse kept driving the needle into the top bony part of my foot.  Three times unsuccessful.  A doctor appeared, got it in one, horrific pain, and told me I 'could scream as much as I liked, no one would hear me and he would take no notice'!  Charming.  That was the the UK.  Wrightington H.  Big orthopaedic hospital just outside Wigan, where the very first hip replacement took place, Prof Sir John Charnley pioneered the surgery.  Anyway, my replacement was in order, no need to remove, was OK, though other small problems.  Prof Len Funk is the orthopod there now.  South African.  Sound shoulder surgeon - though has a bit of a 'God' complex...

Back to scintagraphy.  No after effects.  Was OK.  Took about an hour to run around my body.  Have to stay away from kiddies and pregnant ladies - though those guidelines might have changed.  No, they don't run a Geiger counter over you !    

The resulting picture is stunning.  I lit up like a C'mas tree - all my spondy stuff to the fore - spine, inflammation.  Still have the disc.  They were going to schedule me for a chest scintagraphy at Guingamp - but in the end decided not needed.  Would have been interesting to have seen the plate.

Are you going to stick with Corbel ?  Shall never forget his attitude, screaming away in a total fit, in front of staff and waiting patients.  Can't invent it.  Wonder how long they will put up with him.  There is certainly summat going on there as he sure comes over a tad unbalanced !

Poor Mike.  Let's see IF I can get down to visit you.  Will check with the railway tomorrow.  Can't drive in the dark or low light - crap eyes.  But should be able to manage a swifty.  Drive to Guingamp, park up, take train to Brest, and then a bus.  Keep an eye on the post box here.  I'll p.m. you with details IF I can fit it in.  OK ?  And I'll bring you some ancient Oldie mags !  Have a grand w'end.  At least got the canteen downstairs.  If I don't make it, at least your wife will soon be with you.  Keep smiling -

Molly

 

Got a blasted little 'do' starting right now.  Feels like a hand gripping tightly around a bit of anatomy, right next to the side of the heart.  Am not even cold.  Bah.  Better go spray...

Molly

Sorry to hear you're back in hospital. Believe me when I say I'll be praying for you. Finding this site and others that are going through some of the same things I've been through has started making changes in my life I didn't expect. I don't feel quite as alone as I did. When I would be in the hospital I would feel like a trailing zoo exhibit... sometimes in a 4 day stay I would see 10 to 15 doctors I had never heard of, the conversation would always start " so, you're our little Rarity" I would think 'no, I'm the poor sod who you think is enjoying this'. Just knowing there is someone else who understands the difficulties is priceless, already i have a page of new questions for my cardiologist that I would never have thought of before. Anyway .... I was going to post best wishes to you before I went off on me again... Sorry... I hope you find some way to pass the weekend pleasantly and stay better.if I could I would gladly come keep you company, but, I'm not much of a world traveler.

Does sudden temperature changes effect your heart? Here in Florida (where we are 75 feet from the sun) the sharp changes in humidity when I leave a climate controlled room will set me off quickly.

I am learning that Florida's short and mild winters are no salvation! I started having attacks again 2 weeks ago when we had what I will laughingly call a cold snap (42 dag F).

It took about 7 days for my heart to call down. Now we are having a longer and colder wave of weather, the attack started again yesterday and the temp was only 47F that's 8C for the educated world. I've called in an appointment with cardio but I have to wait till the 24th, it will be 32F by then (0C). I have to admit I'm scared. If this don't let up soon I'll be back in hospital before my appointment. I use hand warmers (packs of shock lime) over my femoral arteries as well as on my brachial arteries under my arms to try to keep warm blood going to my heart to try to reduce the number of attacks but every time I step outside or even move from a warm side of a room to a cooler side of the room the attack starts all over again. I'm going to try to talk to my Dr. to see if there's anything else I could try until the weather changes again. I'm hoping I have enough room left on my isosorbide dinitrate dosage that I can increase it and maybe hold them off a little bit. Any and all suggestions from anyone on how to control this a little bit during the cold would be a great help. When I left Texas I left because of the cold because it was always so miserable to me to be cold now I know why.

G'day Bishpick.

?Try covering your face, that's where it usually sets the attacks off, as you are already wearing clothing, well one would hope you are ?, your face is left uncovered to the elements and that's where it sends the cold shock down into your coronary arteries, breathing in the pure cold air, even just a quick gush/puff of wind to the face is enough to set it off, that's the only thing I can think of if you have to go out regularly .

Morning Bishpick - Try wearing a woollen head hugger.  Much body heat is lost through the head, so, keep it covered.  When really really cold, I even wear mine in bed !  Take care - 

My Cardio called me (his nurse told him I had called about the cold) he had me go ahead and.come.in day before yesterday. We talked over all the suggestions or advice and information I have found here. After an hour we decided to try increasing my isosorbide dinitrate from 80mg to 120mg a day. Last night it was 25 deg F and I had no problems. It could be the prince middle fairy trying to have fun with me or it might be working I'm rooting for the latter. Now if it can just keep working long enough for the cold to stop.

In case I haven't told anybody I absolutely hate autocorrect that's supposed to be the prinzmetal fairy not the Prince metal fairy.

Hi Bishpick,

?Here's hoping the medication is working, I'm on the same dose, apparently that's the max dose in that medication. Although mine is called Monodur 120Mg (Isosorbide Mononitrate) . did covering your face help any when out ? 

Yes it did but cold was still sneaking in under my pants and on my hands and I was still getting occasional attacks the isosorbide dinitrate is working much better I haven't had an attack in a couple of days so I'm hoping it holds up I do have to admit bundling up I look like a Snowman in Florida you wouldn't believe the strange looks you get

I can imagine, be like me moving to our tropical regions from where I am . Queensland Australia seems to be the prime choice for people moving interstate in Australia.

Yes that cold weather will try and sneak in anywhere it can. 

I'm at work today waiting for the shop to warm up, setting here watching Mandela effect videos. Either everything I remember about the world and literature is wrong or something is going on. Something to take my mind off the cold.

Hi Bishpick,

How's your New year been so far ? Hopefully a good one, for all in here for that matter .

Ok I am after someone that may have a bit more know how than me on this one or even if anyone has experienced this.

Coming up to 4 weeks ago now, I presented to our emergency department with my usual chest pain with bigger differences in the way and where the pain radiated to, I got  strong pain to the left side of the jaw in the first episode and felt a hell of a lot more nauseated than I have ever felt and sweated profusely, more than any other attack experienced before. I had the usual done, ECG  Troponin blood test, As nothing showed up on ECG I was eagerly awaiting troponin results, as for the past 3- 4 months they have been elevated, not greatly. The way our labs read it may be different to the way some other countries read it, It's called a high sensitivity troponin  I and T from memory and the decimal point has been moved over one or 2 numbers or completely abolished, I can't remember sorry. The highest troponin reading came back at 49 , once or twice, then they have been sitting between 26 -39 since with the occassional troponing coming back at 16 which is still positive but a hell of a lot better than those other numbers, I had been informed by an emergency doctor a couple of years ago that the cut off point is 14 for the brand name of their troponin testing equipment in the lab. Sorry , went off track a bit there but felt I needed to explain the test results prior to this one, Ok this day I was called into see the doctor as a repeat blood test was ordered, I was informed that my CK's were elevated and greatly concerned them, to round the elevation off it was 14,000 and my Trops had dropped way off to 5, what I normally sit on, between 5-11. I asked questions as did they, they wanted to know if  my  muscles were aching, did I feel weak, what colour was my urine, were my joints extremely sore, etc etc, to all I answered No, everything they asked were normal, I felt normal, apart from the obvious chest pain. The repeat blood test came back, troponin unmoved from 5, CK's had dropped by about 500 , down to 13,500, I was admitted to hospital and put onto IV fluids, I lost count on how many bags they put through me, they had to pump it in as fast as medically possible so my kidneys wouldn't be damaged by this high CK reading, They did have to drop the pump back a few times as something happened one night while I was asleep and the occassional gurgling in the lungs, slowly filling up with fluid like thing, was of no concern because they kept a close eye on everything.I was in hospital for nearly a week and on discharge my CK's were 1200 and coming down. I experienced more chest pain second night in hospital and was told to keep count of my GTN spray, when I reached 7 they said Ok time for troponin test and pain relief given. Troponin had come back at 26 first test, and 28 on the repeat bloods.

Now apparently I have the doctors scratching their heads, my cardiologist hasn't got any ideas. Cariologidy consultant was called in prior to admission to discuss with emergency doctors of what they thought, they said No it's not cardiac related so I was referred on to the medical team, as explained above all the questions asked were all normal for me, I only had chest pain, they knew statins weren't causing the high CK because I can't tolerate them and is on record, so they were scratching their heads too, the boss medical consultant said to his collegue " I'm putting money down that it's Rhabdomyolysis " .

I don't think it was, I wasn't sore, no dark urine, however I did feel like I was hit by a truck and dizzy a fair bit. I think it was cardiac related, what I don't know, and it's just a gut feeling I have, my retired cardiologist use to go mad when emergency doctors didn't order a CK - CK/MB blood test with the troponin blood test, I don't know his reasoning behind it but I remember he always went crook , as the emergency doctors were only requesting troponins. Now my CK's are back to normal now, with a couple of slight high range but nothing spectacular, in fact nothing to even worry about, the interesting thing about this all is when my CK's were extremely elevated my troponins were normal, CK comes back to normal , my troponins rise again, last week it came back at 26 again, was in emergency again early hours this morning and troponins came back at 16. Some of the emergency doctors are trying to tell me that's what I run on now, my baseline basically, don't think so I keep telling them, I bought  it up with my cardio and he has no answers to give me, he can't explain why trops are constantly up , not excessively but enough to have cardiology consultants called in, all my cardio could say is that if my trops start to get into the 100 - 200's he'd have to do another angiogram, well if I ever did get to them numbers, apparently that is a heart attack anyrate, mild one, probably NSTEMI.

Anyone experienced same or similar or may have any ideas as to what else would cause this huge CK jump ?

 

Hi Samuel, hope that you are feeling betterer,  interesting... for me Trops are a cardiac indicator, so any raisedness is an indication of heart stress and "damage" occurring perhaps damage from micro vessels not feeding heart tissue enough...? I would query what was the weather like? were you under heat stress? or thunderstorms? or stress from weather / flu/ other? The CK levels suggest stress infection etc or damage occurring. They indicate some sort of tissue damage and or Unhappy Kidneys. For me while not dehydrated I wonder if you were hot, had been hot or working hard at something ? interesting and I agree with you if it is raised then it is raised not a new base line to work off.....   

Hi Andrew,

How are you ? 's been awhile, hoping you are coping well ? Yes that's what my retired cardiologist had informed me, Troponin is heart specific and that means something is going on with it, however there could be a secondary cause, like you say, kidneys, infections, and as I found out earlier last year pulmonary embolisms, but he said they were secondary conditions causing strain/damage to the heart.

?Interestingly, Yes It was a very hot day when they found my CK's raised, I was working on a firefighting pump, nothing strenuous, just a service on it, plenty of fluids due to the heat, blood tests showed no infections going on anywhere, kidney functions were normal and as I mentioned even my troponins returned to my normal baseline of 5 but extremely high CK's, very weird. I was told the reason for them pumping the fluid through me was to keep me hydrated ( on admission blood test did indicate slight dehydration) and to keep the kidneys flushed out because there is a large protein in highly raised CK's that can destroy the kidneys and that's why all the IV fluids. now that CK's are back to normal my troponins have raised again, they are back up to anywhere from 16-30 now, the lowest 2 days ago was 16, for the life of me I can't work out how the emergency doctors can simply lie to me and just say that troponins that high is what I must now run on, it simply jus can't be true, Troponin levels have a universal (same cut off value worldwide) cut off figure for negative and positive. I questioned my cardiologist and he had no answer for me, he couldn't explain why they are continually raised, I think it's time I see if my retired cardiologist is still practising privately, I have a life long referral to him, and he's excellent he bulk bills me, that's why Australia is called the lucky country with our Medicare system and good doctors who can choose to bulk bill in the private sector, not many do it due to operating privately. Our public health system is free to all Australians, although our GP's can choose to charge us what they call a " Gap fee " usually around the $36 -  $46 dollar mark and  the patients get a refund off the government of around $35 - $65 as the usual  fee for our GP's vary from $$70 -$96 + a single consult. Pity our public health wasn't up to scratch though, it's in a horrendous state of affairs at the moment, Any rate back to thinking about seeing  my retired cardiologist ( from the public health system) He may be able to shed some light to what maybe going on, he's the cardiologist I was saying, always goes crook at the hospital for not including CK / CK-MB blood test, he must like to compare between the 2 (old school cardiologist) , the troponin and the CK's , even though he knows the troponin is the most sensitive one , perhaps there's things cardiologists aren't telling us if some like to compare. I wonder how many other cardiologists operate that way, using both forms of blood testing for heart ?

ok will read again when i am feeling a bit betterer... but, high ck levels also occur in athletics... ((i am a coach too......) usually under heat stress and being active...... hence asking. It is a sort of inflammation and histamine type reaction to being made to work in not optimal conditions occurs in all athletes at a time of either overtraining, hot conditions, various conditions like that. So it also happens to people being active in hot conditions and drinking water not isotonic drinks so the body gets stressed as salts get washed out and sweated out... (try 250ml fruit juice 750ml water and a pinch of sea salt.) reading on the heart forums on faceboook it seems 70% of cardiologists don't have much knowledge of our problems and also seem to work in fairly i am right and no one else is... type of conditions. A&E places seem to be a law unto themselves and have a rule of if we cant fix it due to not understanding it then send them away... fob them off and well just fix what you do understand the rest isn't your problem........ and seems to be a world wide issue even for me the reception at my A&E is either very good or really bad and all points between unless i can get hold of my cardiologist and then they simply wait for him to appear (i guess keeping their fingers crossed i don't move on before he gets down...)  hope this helps, and if you want more let me know.... and yes good to still be in touch!!!   

Yes I use to be an elite athlete myself when younger. I still can't take all this in and even my GP doesn't understand what's going on, I have a new GP and she is taking on a whole new angle, she said we know what's going on with your heart, let's start from scratch, I agreed, she noticed I had extremely low iron and B12 so she ordered another FBC and iron is still down, cholesterol is still high, next step was the 3 X stool samples, unfortunately I tested positive on 2 samples, so GP has requested an urgent colonoscopy and endoscopy, I have been on the waiting list for an endoscopy coming into year 6 now, that's how bad our health system is. GP is trying to narrow things down, you know cross reference, I suppose you could call it, she is wondering if there is any connection between the low iron and B12 with the extremely high CK's and also investigating low iron and angina or at least if it is the low iron causing chest pain, I can see my GP is really trying to help me, you know connecting the dots

?Yes I'm as you, I am actually half zonked out as I write this, I had to have an iron infusion last week and half way through I developed chest pain and it has been troublesome ever since, I have also some side effects from the iron but our GP assist says all side effects from the infusion should have subsided by now, I have extremely sore knee joints, no stiffness just achy and sore, I sweat profusely at random times, I feel sick and get the occasional back pain, this has all occurred since the transfusion. I have been instructed to either go to our after hours doctor or attend our emergency department, as I have said, I'm zonked out from pain relief but if chest pain returns I will be going back into our emergency tonight.

?It's a never ending battle I tell ya and doctors have no idea of what's causing all this with me, first it was and still is the troponins, then the high CK's and it took my cardiologist and new GP to get things rolling on the low iron and B12 even if they still don't know what's going on, I believe every test they have done has come back normal for what they think it maybe, we just have to wait and see what the cameras both end have to show, after that we are all at a loss if they can't find anything. I've been classed as the "difficult" patient to work out, also been labelled as an "unusual" patient with no symptoms other than the chest pain / angina for them to make any kind of diagnosis in regards to the above mentioned.

It is odd how we have ended up fighting this fight... also frustrating that it is still poorly understood.... Good luck with your new doctor.... really hope for you and us the American system doesn't come in - they are seriously looking at a law which says if you disagree with your doctor they can refuse to treat you and indeed mark you as being in dispute which means any medical support can be withdrawn until the dispute is ended..........