OK guys! Well some of you know me and some don't. Finally diagnosed earlier this year by Prof Peter Collins "by symptoms " of MVA micro vascular angina.
I've had many a bad day and hospital admission,and many people with this condition know how it completely changes your way of life for good 😢
My reason for posting. I've had near on 8weeks of No pain with exercise at the gym and doing nothing.Even the cold didn't affect me, and that really confused me so much so I started to question my condition.
Now out of the blue I've used my spray 3 times in as many weeks because I'm having pain during exercise and at rest at home and during sleep and waking me in early hours...I feel like I'm oxygen starved suddenly for last 3 days walking around the house or even as I wake...obviously it's angina but has it changed?
I'm struggling on a 20 minute dog walking with my 5 year old daughter and partner and that's not like me..I also find that around 3/345pm I start to struggle and suddenly feel wiped out and often have an attack around about that time and go right down hill,then suddenly perk up by 430ish?What is that all about?Is the body at a low at that point in the afternoon?I've obviously contacted my consultants secretary but it's still Xmas period. I'm just baffled and actually very upset that these attacks are going to lead to something nasty . sitting here in warm and had another attack right across my left breastbone and it feels like I'm being squeezed so tightly that I stuggle to breath properly Why am I suddenly having these attacks that feel like there both in my mid back and around lung area and crushing sensation right across sternum. To cap it off I've started to get my sciatica back that is causing me so much trouble from my back of my quad down calf and into foot
Yes I know I'm falling apart
But how can I go nearly 8 weeks pain free and hitting the gym again and walking in the cold,to going backwards to were I was when I was first diagnosed and was having these issues daily then.
I'm stumped.
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Rob6868
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I am sorry you are going through a rough patch. This is a very common feature of Microvascular and/ or Vasospastic angina.
The one thing I can say is that microvascular angina and vasospastic angina can be very unpredictable .
I live in a state of stable instability!
2019 has not been the best year for me as I have had 3 visits to A&E and 2 hospital admissions lasting between 8 and 10 days.
I now know why I have my angina due to vasospasms in all my coronary blood vessels large and small. This was confirmed by an angiogram with acetylcholine. This helps me cope.
I have periods especially in the summer with very little pain and then just like you even after 7 years I wonder have I been imagining all of this pain. I am then usually hit with more pain sooner or later.
I even walked up Haystacks in the Lake District this summer. 8 miles and 1500ft of ascent. I can do very little at the moment.
My main stressors are the cold, emotional and mental stress.
Some I can control some I can't.
It is tough learning to manage not only the pain but how we emotionally respond to our pain. The anxiety the pain causes is something else this just makes the pain worse.
Have you asked to be referred to a Pain Management Programme?
However whenever you feel at unease, the angina pain changes in intensity or frequency then it's time to go to hospital to have a check over.
Thanks milk fairy as ever you are always at hand.Well this latest bout has put me in bed at 8pm on a Saturday night. So that's me done for this weekend
I struggle to understand how I can go days or weeks and then return to the gym and fall back into that state of am I imagining it all just like you mentioned. Then wallop I get a very nasty reminder of just how unpredictable and horrible this condition is.Hence I'm now in bed with chest and stabbing pains in left side of back..Not taken spray yet but am in verge of it. 52 on new year's day and I feel like 62 right now and with how scary this condition makes one feel,I often wonder if I will make 53 I hate the sense of normality it can give you then snatches it all away like some cruel game.Like you I've often felt I should be in hospital but have just managed to make it through the night on 4 hours sleep at present time...that won't be helping either.Plus my herniated discs have flared up so I now have severe sciatica in my whole leg and foot to add to my misery tonight..I've contacted my consultant about going to st Thomas and also said I would be happy to be a part of any research into this awful condition
So I await he's reply.At times I do feel like I've been dealt a bad card especially as I'm one of the rare guys with this and I've a young family to look after. But we can all feel sorry for ourselves at times but that's not going to help is it.
And to think you walked all those miles in the lake district and now your back to square one with the pain
That's exactly how it is for me. Let's you do something then stops you in your tracks just as your achieving something worthwhile..There has to be more done and more research done into this condition and sooner rather than later.I even covered my whole face tonight and gloves and hat and cold still got to me.
I hate the fact I never had all this prior to my angiogram.
Your comments have been very helpful today. I'm struggling with my heart failure but now I'm on my own I've got far less to do and am looking after my physical health more but feeling rotten. More breathless, chesty, tired and a little pain. But I'm finding just opening the door to cold air affects me, and sorting out financial affairs and pensions etc very stressful. My psoriasis had got so much better but suddenly worse. So yesterday I was wondering what to do. Today I know! Tomorrow phone g.p. for appointment and stop the clock for a few days then when I'm ready restart it! It's so sad to hear of others like you who have the downs with the ups. But I'm full of admiration to all of you who face each down with positiveness . That's the lesson for me! X
It sounds awful. Push for further investigation and don't take no for an answer. I know the pain you mention and the other symptoms too but haven't had investigation for microvascular angina. I had an angiogram a year ago but not with acetylcholine so anything of that nature will not have been seen.
I can't get my consultant to take the possibility seriously but I know what I feel and I know something isn't right. Don't put up with it push for assistance please and the sooner the better. Best wishes.
Milkfairy I had an MRI profusion scan and it was at St Thomas of all places.I never personally saw the results but we're told some weeks later is was normal. So you were saying it can pick up MVA
It can pick up some types of MVA due to microvascular dysfunction not vasospasms.
People with microvascular dysfunction tend not to be able to exercise and get pain on exertion. While those with vasospasms tend to be able exercise but get pain at rest.
Lots of people seem to get a delayed response to their stressors such as the cold, emotional and mental stress and exercise.
It's a crazy crazy condition that keeps us all guessing.
The only definitive test for MVA and vasospastic angina is an angiogram with acetylcholine.
Another thought pain is a stressor and your sciatica maybe making your angina pain worse.
So maybe the way you have explained it is i could be dealing with vasospatic angina and not MVA bearing in mind it was apparently normal, my profusion scan and I often get delayed pain after exercise.
As for my sciatica
Well I've been under a neurologest for over 7 years
4 times I was due for spinal operations
S1 L5 discs
That when it flares up like now it causes many. many problems and I'm often hospitalized as I lose my footing on my left side because of severe impingement
I've had everything thrown at me including the latest device's to stretch my spine
Nothing worked including nerve root injections. I've put up with losing my jobs because of it and 7 years of hospital stay to then be hit with this heart issue now.
I've tried everything for my pain but apparently I shouldn't use nurofen because of my heart now.
I've also got two discs out in my neck that cause issues when sleeping. All this is obviously not helping the pain with the MVA as you say.
Thanks Milkfairy. No I haven't had a perfusion MRI just a ct angiogram. I will look further into your suggestion. Thank you, wishing you a happy new year.
Hi Rob6868,
Sorry to hear you are struggling at the moment... I am a 48 year old male with MVA, diagnosed by professor Collins around two years ago. I had the perfusion MRI to prove the diagnosis...one of the most traumatic things I’ve ever been through but for me it removed a lot of “what ifs “ and helped me come to terms with this.
I too am really struggling right now, the cold and lack of sleep (I have complex sleep apnoea too), stress and busy Christmas all hitting at the same time. I feel absolutely awful right now, worse than normal and recently have nearly called an ambulance a few times.
It’s good that you can exercise (there’s no way I could go to the gym!) but maybe you have pushed things too hard? I can be in pain for days or weeks after doing too much at work. Have you tried using a hot water bottle on your chest or a microwave heat pouch? They work best for me.
The other thing that struck me in your post was your sciatica... I have a vertebra in my neck which is squeezing a nerve from my chest which they think may be amplifying my pain, so maybe something similar is happening with you?
I would also agree with you that the pain and tiredness often hits around 3 in the afternoon, you’re busy in the day and suddenly it’s all too much.
I hope you get back to some normality soon... I finally got some sleep last night so am hoping I can too!!
Reading the comments on this thread makes me feel so much Better and Lucky !!
I started in 1982 with a Heart Attack. 2003 had a Bleed in my Brain from a leaking AVM. 2004 had a Tumour removed from my Parotid Gland. 2015 had Coronary By pass Surgery 2015 Diagnosis for Heart Failure moved from Moderate to Severe. 2017 A couple of stents added to previous By passed LAD. 2019 Cardiologist instructed Heart Failure Nurse to get me onto Max dose of Entresto asap which will be achieved 9th January 2020. Next cardiologist appointment will be in June 2020 with an Echocardiogram prior to the appointment.
So why do I think I am Lucky
I have Little Pain (Discomfort Yes ) Short of Breath at times (currently manageable ) Lucky in that I seem to manage any side effects from Medication, Bisoprolol at 10mg did cause low HR at 33 BPM so reduced to 7.5.mg This morning BP 117/70 HR 70
So Rob at 52 you have plenty of time to get things sorted out because at 72 I can assure you living carrying a couple of problems is far far better than the Alternative.
I think what keeps me positive is when I go to the Clinic or see the Cardiologist there always seems to be people in a lot worse condition than me !!.
I did say to my wife " This waiting room seems to be Full of Old People ", Yes she said looking at me You Are 72 you know, which I am not sure of. I am pretty sure my Mother told me wrong and I was born in 1967 not 1947 !
Regards and I really do hope you can get things sorted.
Hello Rob6868. Sorry to hear you're going through a bad patch after a run of no problems. I can understand how dispiriting that must be.
MVA is a most baffling condition. But I do feel a bit hopeful in the sense that there does seem to be more momentum behind trying to understand what's going on. I remember Prof Kaski saying at the Meeting of Minds conference in Sept that when he first started researching the condition he couldn't get his papers published. Nobody was interested. But now there are a number of centres of activity working on the condition. Hopefully this will continue and we will build critical mass.
Thank you dunestar I really appreciate your input.Yes milk fairy has mentioned the research and I await any further research. It's the unpredictable side of it with the pain that gets to me..You just can't run and hide but rather sit and wait it out and suddenly stop what your doing.Even when it means telling your 5 year old daddy can't play at the moment as I'm in a lot of pain
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