So 3 weeks ago now I had what I presumed was a heart attack, tight painful chest pains radiating to my left arm, heavy sweating and dizziness. Called ambulance and taken to hospital. Had bloods taken and told that I'd had a heart attack as my Troponin levels were raised. The following days I had an angiogram to check and found I hadn't got any blocked arteries, so I was told it was a Minoca.
Within several hours I was given some meds and sent on my merry way with my discharge papers and told I'd have an MRI as an outpatient.
So the next day I felt a little out of sorts as no idea what was going on. So decided to try getting hold of the department. Got passed from pillar to post till eventually I was answered by a rather unhappy gent, who I couldn't tell you his position, but clearly I wasn't his problem. I asked about what happens next, he said to carry on as normal. But I don't know what triggered the attack and have been put on meds I don't understand why. "If you don't think you should take them, dont" was his reply. And hung up.
The same day I called my GP. Never heard of a Minoca, but signed me off work for 4 weeks and told me to follow bhf after a heart attack follow up.
A week later I had a second Minoca and went in. Was seen by another doctor who had no idea what to do with me as my Troponin levels this time doubled on my second blood test. So he spoke to a consultant who said to give me some GTN spray to take home.
So what next.
His response - go home, you will probably have more of these, take the GTN spray if it happens again, then a second time if that doesn't help. Only call an ambulance after 10 minutes if that doesn't help.
I'm still none the wiser. Been told to rest, but not sure what I can and can't do. Some days I'm knackered and have no energy, others I feel fine. Some I'm breathless from just talking.
Im going to speak to my doctor towards the end of this week. But really have no idea what I'm meant to do.
Rant over. I'm a 50 year old man who actually feels pretty down over all this.
Written by
Dave7674
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As you have had a form of heart attack you may qualify for some form of cardio rehab organised by the hospital. One of the objectives of cardio rehab is to help people come to terms with their new situation, answer queries, and provide guidance and help for the future. These are usually held a few weeks after the event. Your discharge notes may comment on this, but if you are not sure, contact the cardio department medical secretary.
And if you feel you are getting nowhere with the hospital cardio team, enlist the help of the hospital PALS team, that is what they are there for.
I am sorry you are facing so many challenges accessing the information and care that you need to manage your heart attacks.
I was admitted to hospital in 2012 with a suspected heart attack, however I was incorrectly told I couldn't have angina or a heart attack because my coronary arteries are unblocked.
There was very little knowledge about Myocardial Infarction non obstructive coronary arteries MINOCA at the time. I was later diagnosed with vasospastic angina.
A MINOCA isn't a diagnosis as such more a description of a heart attack that has occurred without blocked coronary arteries.
The possible causes are microvascular dysfunction, coronary vasospasms, spontaneous coronary artery dissection SCAD, a blood clot or a small piece of plaque breaking off and blocking a coronary artery.
Arrthymias can also cause this type of heart attack too.
There are a few other heart events that can mimic a MINOCA such as myocarditis or Takostubo syndrome.
It's important to have the underlying cause of your heart attack determined, so you can have the appropriate treatment.
A cardiac MRI is usually recommended for people experiencing a MINOCA.
A specialised angiogram which tests how the coronary arteries function is needed to test for microvascular dysfunction or coronary vasospasms.
You should be offered cardiac rehabilitation too.
I suggest you contact the Patient Advisory Liaison Service PALS of the hospital saying you are disappointed by the follow up care that you have been offered at the moment.
Request Cardiac rehabilitation.
I suggest you ask to be reviewed by a Cardiologist who has an understanding of the possible causes of MINOCA and in particular vasospastic and microvascular angina.
The BHF website unfortunately doesn't have any information about MINOCAs.
This website created by four patients living with microvascular and vasospastic angina, who have had heart attacks without blocked coronary arteries, has this information.
I had exactly the same situation as yourself. Signed off with no follow up planned after Angiogram showed no blockage. This was Sept 23. 12 months on I'm still having extreme chesty pain intermittently.Oct 23 was told I had Pericarditis.
I've had to really make a nuisance of myself to try and get answers.
Upshot of all this is I'm now under a different Health Authority after moving home and I actually have a Cardiologist that listens.
Had an MRI on Saturday to get to the bottom of it all, especially as my new consultant believes I have been misdiagnosed by York and Scarborough NHS trust.
This was compounded by my old cardiologist, who after a great deal of pushing also cast doubts on my Heart Attack diagnosis.
My Traponin level was only 100 and all other vitals were normal.
I'm hoping the MRI sheds some light on this very question. After reading all your posts over the last 11 months it's one of the subjects I aim to bring up with my new Cardiologist. GTN doesn't touch the discomfort which can be quite debilitating at times ranging from pressure discomfort to sharp stabbing
sorry to hear of your situation Dave, sadly MINOCA, as Milkfairy explains, is a label not a condition and someone needs to find out what is happening in your heart so that you can access the right treatment
the medication you were given should have been explained to you, that is part of a doctor's role and whoever gave you that dismissive response should have passed you on to someone who could do that if they couldn't
but your immediate problem is probably getting some advice on how to help yourself to recover and that is difficult when you don't know or understand what is wrong
if the GTN spray helps that is a clue that you have a problem with arteries in your heart being narrowed for some reason - if you don't understand when to use the spray a pharmacist can help advise you as well as the BHS support line
whether or not the spray works you need further investigations to find out what the underlying problem is - you GP needs to be involved in getting you referred to a cardiologist
the recovery process after MINOCA is different to after an MI with blocked arteries because the effect on the heart muscle is different - unfortunately I am not aware of any accepted guidance on this (Milkfairy is better informed than me on this) but I feel that caution is the safest approach and that rest, to allow the muscle to repair and recover, with gradual increase of activity are the best approach - this is based on my experience after Takotsubo - your GP may have trouble understanding this but you will need their support with staying off work
be prepared for a slow recovery and medics who have no understanding of MINOCA or non-obstructive heart conditions - read up for yourself and settle in for a long haul🌺🙂
it’s horrid when you’re sick and no-one tells you why isn’t it ?I admit I m an avid follower of dr google and if there is anything I don’t understand, I ring up dr google , may not be everyone’s choice but it helped me . Good luck 👍🏼
Hi dave .this happened to me at 58 . I AM 64 NOW.admitted with chest pain after heated discussion at work. Tropinins raised and doubled on 2nd test.kept in on monitorTold had heart attack. Started numerous meds.Sent for angiogram which was clear so discharged me saying all clear.no heart attack.stop all meds.Reviewed by cardiologist. Said something clearly happened so shouldn't have stopped meds.
Have tried numerous meds inc calcium Chanel blockers and nitrates.unable to tolerate due to exacerbating my migraines.so all i have is gtn spray .i am 6 yrs down the line and still none the wiser
Yes,he diagnosed cardiac x syndrome and to be fair he has tried me on numerous meds inc ranolazine, ditiazem,nitrates but as I mentioned I can’t tolerate any of them as they exacerbate my migraines big style. I have taken propranolol for over 30 yrs for migraine prevention so still taking that.Use GTN as last resort as you will know also provokes headaches. I have recently had a perfusion scan which he said was low risk ? He said it showed non specific non epicardial territory changes and only small volume non specific changes which he said was consistent with MVA.It was Dave’s post which brought back memories of how I was treated at the start, after clear angiogram being told nothing wrong go home and get on with life. Emotionally a rollercoaster!
Thank you for all your responses. From what I can gather, without getting this MRI and speaking to a cardiologist, I'm still going to be none the wiser.
Think this is my main issue, not knowing the cause so I can crack on with doing or not doing what I used to. If that makes sense.
Going to chat to my GP (well try to) and see what can be done next with appointments and whether I can return to work after this 4 weeks.
If you look on the INOCA INTERNATIONAL website you might get some help,or at least someone to speak to. BHF awesome for help. So sorry you are going through this.
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