I'm currently under investigation for vasospastic Angina and have just endured a horrendous night and once again no sleep thanks to being hit with was I below is really painful angina in my mid back.Along with it is the usual dull cheat pain.But the back pain that feels like fire going through me or a hot knife is so upsetting and just hasn't left me alone all night.Im taking my Diltiazem as requested and my asprin and atovastatin but it's just cutting right through my Meds. I'm so exhausted now and yet another Sunday ruined thanks to this awful condition. Never smoked.domt drink and lost 3stone and healthy 32/34waist.
Why do I feel like I've been hit with a huge unlucky stick😭😭
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Rob6868
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I get pain mostly in my upper left back the bottom my ribs and chest bone .
The worst pain for me is what feels like a cheese wire cutting through my left upper chest. My bra feels too tight...not something that will worry you though😉.
It does take time to get the best combination of medication that works best to control the angina pain.
We just have to find ways of accommodating this unwelcome guest that doesn't want to leave. This also takes time!
I get the hot water bottles out and take some paracetamol and codeine prescribed by my GP. Listen to music.
I am 7 years further down the road on my journey with Microvascular and vasospastic angina and it is possible to learn to live with the pain. Not easy I know and I do need extra help from time to time which for me is an admission to hospital for the big guns of IV GTN and morphine.
Once you get your diagnosis confirmed I suggest you ask for a plan of care to be written by your local Cardiologist so whenever or wherever you go into A&E the staff know how to care for you.
Or you could as recommend by Lezzers drink gin though Michael claims whisky is a superior beverage. Meanwhile Zena drinks non alcoholic gin which is just against the laws of nature....Sillyfroggy agrees with me about the gin.
Milkfairy that's unbelievable. I'm absolutely spot on to your pains right now . Exactly the same and it hits hard for a couple of seconds and feels like I was stabbed and it makes me gasp! Them I get relief and bang it comes back right across my middle back.I was just telling our mate Gunsmoke that I had a very upsetting time yesterday and then next to know sleep and think it's brought this on.I cannot believe the similarities between us both . Something will always trouble me though! Where did this condition suddenly come from? Was off the back of my blockage or what.At this very moment I'm getting really bad back pain...jesus it's so painful and little twinges in my arm.And then when it feels like it,it just goes?no warning nothing! leaving you walking on eggshells all day!
I've just taken 1000mg paracetamol because that's all I can take.But it's not cutting it and I will need to speak to someone. I go from running around and getting things done to being hit hard with this and left feeling wiped out.Life with this is crap! But I've always been positve when pain is under control.So if I can be pain free somehow then I can cope
I wonder if BHF could put some pressure on the RBH.
Rob, you can go to the Care Commission's website and submit a report of your experience. RBH isn't the best. You get an impression that patients are totally unwanted by them, unless you are nearly dying in a chair. They will wheel you in. . . because they would "have to" not they really want to.
I was previously discharged with the evidence of ischemia, that was three years ago. Their patient care standard sucks, I must say. . .
It's good to read Rob's threads, though. Being assertive and outspoken for other patients, too.
No mate because I'm going around in circles at the moment. Waiting to go to Brompton hospital on 1st August but we all know it will be the same old explaining something to someone who probably has no notes on me and I will have to start explaining what I'm going through all over again.Im in agony this morning. I had a very stressful and upsetting hour yesterday and I think that has come back to haunt me.
I wish you well for 1 August. You could send RBH an email setting out your history etc. Are you going to see Prof Collins privately or NHS? If the former I'll pm you with my experience.
dunestar that would be great if you don't mind? I suspect it's not all good? But I would be grateful if you can send a personal message.But I'm going under NHS and doubt I will end up seeing the man himself
So are you getting the same issues as Milkfairy and myself?
Perhaps it is something totally different mate.But I would be happy to swap if it isnt👍 I noticed you said you don't get alot of pain during exercise. I find I can go and do an hours work out with weights and I'm fine in general. I never overdo it these days but I'm usually fine.Yet another day and I just can't go?
I can't help you, more is the pity, but I do want to say that I know to well that MVA can be total misery, and to say that my heart goes out to you completely.
hi rob. sorry to hear your poorly. pain really can drag you down. it sounds like the pain iv been getting for the last few months. i always had central chest pain but now it’s top right side of chest which feels like a hot poker being pushed through to the back. i dunno if this is normal angina as i only really suffer unstable angina. hope you feel better soon and you get your answers soon❤️shiona
It's a real struggle and I'm still wondering where the hell this started and why?Perfectly fit normal gym going guy last before I the start of all my troubles.Its the constant pain and the way it just pops it's ugly head at any given time and knocks you for six
you too rob. i know it’s so frustrating but we need to keep fighting the good fight and hope one day victory will be ours take care my friend hope it eases off shortly
Seems to be a common theme. My microvascular angina Pain is always worse at night, usually in the centre of my chest and radiates to my left shoulder and through to my back occasionally. I don’t get chest pain often when exercising although I do get short of breath.
I find GTN spray only takes the edge off, I don’t bother with analgesia as it doesn’t help. It’s the randomness of the symptoms and lack of control I find hard to cope with. Have had to cut back on my cardiac meds ( nebivolol and nicorandil ) as my BP has been low and I feel really dizzy when standing!
My triggers are my underlying auto immune disease, I get 6 weekly Biologic infusions and my chest pain always flares up around 4 weeks into this cycle. The fatigue and feeling totally wiped out is my worse symptom, I can cope with the pain probably because my joints etc ache every day which is a distraction.
OMG Tynemouth you have and still are going through the mill with this.Its intresting that once again another person has mentioned that they don't get alot of pain during exercise. That's exactly what it's like most of three times for me.Yes like you I feel breathless but then I wait the two minutes for heart to get back to normal and start again on weight machine.
So what do you take for the pain at night?I'm woken every single night and that leads to tiredness then that leads to more attacks! Also how was yours diagnosed?I'm off to the brompton on the 1st August and we will have to start all over again.Im just trying to think of what to go in there and say when I get there.
It's a real blight on our lives.I won't even fly now and I find it a real struggle to be that dad that I was running around like a nutter with my youngest daughter. Now I sit as miserable as single watching every one else do it.I just want confirmation and to be pain free then I will do my best to get on with it.Its making me so miserable that I want to retire but yep you guessed it I've got to wait at the minimum another 3years! I honestly don't think I will make that long
I had an angiogram with an acetylcholine infusion, pressure measuring guide wires and another IV medication which I have forgotten the name of ( commonly used to treat SVT ) as part of a clinical trial funded by the BHF.
The only thing I take for the angina is my GTN spray, if it doesn’t work I get up and try to watch TV or read a book. Occasionally I get 3 or 4 days of almost constant pain, they are hard to bear. I was forced to retire due to ill heath 3 years ago, my youngest child is 17 so at least I don’t have the pressure of work etc when feeling more unwell.
I find it’s the cumulative burden of my symptoms that’s hardest. I have a few different diseases but Consultants are very specialised now and are mainly focussed on their own body system. There is poor understanding of how people’s quality of life is affected and what is important to us. What concerns me is how any outcomes will be measured in clinical trials of the future looking at microvascular angina. Do clinicians really understand how this disease affects us and what symptoms we would prioritise?
I am shouting loud and clear about the effects on the quality of our lives of Microvascular and Vasospastic angina where ever I can.
I am asking that pain levels as well as other symptoms are measured in any ongoing research.
The importance of having a Clinical Psychologist with experience in the management of pain on the trial steering groups etc.
You may note that the Vasospastic angina info makes reference to psychological problems including Post traumatic stress disorder which can go with learning to live with these conditions
The big issue here Milkfairy are PROMS. The default is the Seattle Angina questionnaire which is over 40 yrs old and had no patient input in its development. It was the measurement used in the clinical trial I was on and when I fed back to the trial team that I didn’t think it captured my experiences I was told it’s used because it’s “ validated “.
I think the most important thing is to get some knowledgable, vocal patients as co applicants and on trial steering committees. Then maybe patient outcomes that actually have relevance to patients will be chosen and measured in a meaningful way. Without that I question how relevant any research will actually be.
I made exactly the same comment about the angina score being used in some trials.
I am a co applicant to a research application if successful I will be sitting on the trial Steering group and they are developing a new angina score to be used on an app so the trial participants can score their angina symptoms.
That sounds great and I hope that patients coproduced the angina score and app. In my experience as a lay reviewer apps are usually developed for patients not with them.
Hi Gunsmoke,
I think the problem is that there is no good quality evidence to support any medication in micro vascular/ vasospastic angina. I have found nicorandil fairly effective and there are a few small research studies to back up its use.
I was on 100 mg of isosorbide mononitrate when started taking nicorandil so they can be taken together, isosorbide didn’t really work for me. 30mg of isosorbide is a modest amount, has anyone mentioned increasing that?
I also tried verapamil ( ineffective ) and diltiazem ( made my ankles balloon ). Just appears to be trial and error unfortunately.
You need to be the educator in these hospitals Milkfairy to help these cardiologists because you have the knowledge to help us mere mortals who are new to all this😆
The worrying thing is that it says if you have a fatty build up of plaque then your vasospastic Angina symptoms can be alot worse.Well does that mean before a stent procedure has taken place?Or even if you have had a stent to open up the artery like I've had.
We do have each other. I had no contact with anybody else with MVA and Vasospastic until many years after my diagnosis 7 years ago. It felt as though I was in the wilderness.....
I can also relate to that sort of pain which leaves me exhausted and in need of a couple of hours sleep with several pillows and extra paracetamol. Feel very intolerant to heat, cold and humid weather. Also seems attack’s get more severe over time. I am 2.5 BetaBlocker and 60mg Nitrates with Aspirin and 40mg Statins. Thinking of asking for a referral to Royal Brompton to see Prof Peter Collins. Not sure if that is just possible but feel at times that I have aged 30 years in last couple months with MVA...
Oh I can so relate to what your saying. When did this all start for you?Mine has come from knowhere since last year after I was admitted for an angiogram for a blockage. Now my quality of life is nothing like it was and nor is family life.I try to be the dad I was before but I can't and that's sad all thanks to this bloody condition. I get hit with spasms now daily and it's really changed me.
I don't know if I will get anywhere at the brompton because you probably know it's a long long trip down this road.Im now on 120mg Diltiazem twice daily and that's been increased.But I've noticed the pain is now getting through that too
It is OFFICIALLY recognised that this condition can be "crippling". It's official and there's no "but" about it. But here in UK? It's not quite caught up yet.
I have to be honest. UK NHS never do well when it comes to "ill-defined" condition(s). Someone commented on this, not me, but I agreed. It's a good way to describe it.
I look at scientific journals since decades ago. Family memebers/relatives being in medicine and, I tend to read to get some answers. I see the trend after a while.
Quality papers tend to come from Asia/Europe. UK ends "oh, is MVA for real?" as if it's some sort of joke. whilst Asian/European counterparts positively *deal* with the condition and publish organised/detailed info. Not in the UK, maybe, except in Glasgow, or other special research centres.
Not just Cardiology. It's pretty much everything else. They do more abroad. That's all I have been saying. In every country, there are "go to expert/professor" that knows so much about the condition. So patients are all sorted out. No problem.
In the UK, you run around and wasting your precious time on unproductive visits to see consultants, some from the remotest areas to the hospitals in the South.
If Cardiologists are honest, they should tell you, they don't know what to do, whilst we are in deep *manure* sinking like Pound sterling. Honesty has to be there, but it seems consultants are either burnt out, caught up in politics, don't/can't deal with someone who had MVA. I think this is also an attitude.
Abroad, they probably do their best to support you or try to get the support you need in other hospitals if they can't themselves. This gives you a therapeutic boost. The reasons why people with some rarer conditions never get better, because consultants don't treat you like persons that they try to care.
They are not fully present with you. They are probably thinking "oh well, 10 more patients, I'm outa here!". I encountered a very knowledgeable, younger guy (Cardiologist) once. He was from abroad. He knew tons of stuff and he was genuinely interested in the condition.
Middle-age mid-career Cardiologists are probably the worst. I have seen these, too.
I am in contact with other people all over the world.
We all have problems. It is sadly not unique to the UK.
I am debilitated by my pain. I prefer not to use the word cripple or handicap they are as some would say 'old skool '
The management of non obstructive coronary artery disease is to included in the curriculum of Cardiology Specialist training in the UK in the future.
I have lived with both MVA and VSA now for 7 years. The landscape is changing not fast enough more needs to be done.
The latest winner of the prestigious British cardiovascular intervention Cardiologist young investigators award was by my Prof's research fellow his research was into Microvascular dysfunction. 3 out of the 4 entrants were investigating Microvascular angina.
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