So after many trips and stays in hospital and being treated for CAS or unstable angina .Last week G.P said my symptoms were to extreme for that but if get pains thst are too bad call 111 which Saturday night they did .tight band under chest then dome centra pain used gtn and eased then came back with attack tight band central and stabbing pains tingling down arm and going up neck and jaw .ambulance trip .bloods done ecg all fine .
Then one doctor decided could be trapped nerve or compression. Said need referal for mri and fir pain management as I said effecting every day life
Gave me some morphine and said check if that helps. Half hour later said I've still got some stabbing pains and tight band .said its still same plan you can be discharged I sat there in tears .very confused. Told to carry on with angina. medication and Gtn spray when needed .
Back to try contact G..P today to see my next plan .
Sorry for long post /rant
Just want a firm diagnosis.
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Milliemoopink
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Hi ,yes had echo ct and angiogram and clear still being treated for angina symptoms but not diagnosed with it .awaiting follow up with cardio .Just confused with it all .Will have a look at Tos .
Unfortunately vasospastic angina is poorly understood and under recognised by A&E and Cardiology doctors.
I have just returned from hospital after my latest 10 day stay to calm my unruly coronary vasospasms with IV GTN . My 20th admission over nearly 12 years. I have a careplan so I am not sent home.
I sometimes have ECG changes but it’s very difficult to catch the dynamic ECG changes that a transient coronary vasospasms causes. I usually have small rises in my troponin blood levels.
How have you been diagnosed with vasospastic angina?
It's a rare form of angina and is difficult to diagnose. A functional angiogram using acetylcholine is the accepted way to confirm vasospastic angina.
Has microvascular angina also been considered?
Microvascular and vasospastic angina are both types of angina/ ischaemia non obstructive coronary arteries, ANOCA/INOCA.
There are several centres taking part in a study into diagnosing microvascular dysfunction and vasospastic angina taking place.
Perhaps ask your Cardiologist to get in contact with the Principal Investigator for more information.
This recent paper may be helpful. My Cardiologist uploaded it into my careplan. The medical and nursing staff used the paper as a resource as so few know much about vasospastic angina.
Thanks for your reply .They just mention unstable angina and coronary artery spasms .but then when see other doctors they just say can't be your heart as tests all clear not had the stress test one as yet all symptoms followed after severe asthma flair up when stabilised that in hospital I kept getting chest pains and have continued since October 23 with symptoms getting worse and can't stand or walk about for that long .I know there are far worse cases but just want some answers to lead a normal life again .
You may need to travel.There are knowledgeable Cardiologists in Oxford and the Royal Papworth in Cambridge.
One of the best researchers is at St Thomas's Hospital however he doesn't see patients privately and the waiting list to see him is very long. He only has one clinic a month.
Cambridge is a centre taking part in the iCorMicA study.
We asked not to name individual doctors on the forum.
Hi Milkfairy, I have found your posts very helpful in understanding this condition but am finding t hard to come to terms with the fact there is no cure. The times I am not having spasms, I feel great ( the longest being 8 weeks so far), but when they return , it really knocks me for six and I become fearful of not having an active outdoor life, which I love. How do you manage, with all you have been through, to keep a balanced equilibrium?
When we become ill with any long term condition it can take it's toll on our mental well being. A place of calm acceptance alludes us. Acceptance is not giving in or a passive process it needs working on like exercising our muscles.
The Portuguese have the word Saudade which sort of means a wistful longing for our former Iives and grieving for the loss of the future we thought we were going to have.
We can go through a grieving process.
I have learned to walk a tight rope, at first I had no safety net and I fell off mentally into a place that no one wants to go. I thought I was going mad, however I was later diagnosed with PTSD.
I knew I had to find a way of living with vasospastic angina rather than suffering.
This is work in progress!
First I armed myself with knowledge. I drew on my skills from my former profession.
There are no clinical guidelines to say how we should be cared for, so
I got myself in places of influence. I am an expert patient advisor to various professional organisations and work with researchers on research studies.
I have co authored several research papers with Cardiologists.
Then I made myself a safety net of resilience which I work on when I am well to help carry me through my challenging times.
I attended a Pain Management Programme which helped me react differently to my pain.
Mindfulness Meditation course.
I pace my activities.
I practice yoga and Tai chi which helps with learning breathing and relaxation techniques to manage my acute pain episodes.
I have had help from a Clinical Psychologist to help me develop strategies to manage my hospital admissions. I have made a self compassion tool kit.
My dog is also very important. I walk Millie everyday.
She is a very gentle playful black Labrador.
I grown fruit and vegetables in my garden.
I accept I will fall off my tight rope from time to time and that's okay.
I have for the last 4 years had a wonderfully empathetic Cardiologist. He has seen me quite a few times, during a severe episode of my coronary vasospasms. He acknowledges how badly affected I am by the condition.
I can contact him and the ward manager when I need admitting.
He comes to see me on the ward.
He co wrote my careplan with me.
Most of all, I have the most amazing husband and family.
They are the ones that pick me up, dust me down, give me hug, and help me back up on the tight rope.
Finally, I try to hold onto the hope that one day through research that awareness of microvascular and vasospastic angina will continue to improve, become easier to diagnose and better treatment options will be available.
I hope you are able to find the resources to help support you too.
Maybe start with self compassion and kindness to yourself?
Thank you so much for taking the time to reply. I will try to take on board your strategies for living with this disease. I think, for me, acceptance is the first thing I have to work on and from that move on. Thank you.
Whatever you do don’t assume it’s unstable angina! I’ve had sharp left chest pains with left arm pain for several weeks. I was sent to the AMSDEC ward via A and E yesterday and told by a consultant that the pain was very likely non-cardiac in origin, probably arthritis. The reason was that if I got pain at rest but it improved on exertion (e.g. walking about) that meant it was not unstable angina since the latter would get much worse on exertion.
Morphine is not necessarily going to help a trapped nerve and the common treatment is a drug called Non Steroidal Anti inflammatory BUT it doesn't go well with cardiac problems & is seldom recommended the other thing that strikes me is that you could have both, nothing to say you can't have more than one thing wrong at a time. Strange where you describe the pain I agree with you it sounds more cardiac than nerve but having spent a lot of time trying to describe discomfort (& failing!!) I get the problem. Suggestion have you tried deep heat rub where he says the nerve is trapped I use a heat pad but it is for my neck & shoulder& that is definitely nerve pain. Can I assume you are on either Clopidrigal or Asprin75mg as well as the GTN Since doctors only know what you tell them Try keeping a diary it will make it easier to say what happened I didn't notice you mentioning it but have you felt lightheaded or off balance & how long did it last. I am exhausted these days so I relax and dose for an hour here and there it helps me slow my breathing & often eases that problem. Lastly did they do an echo it can show up if there are particular areas of problems Take care
Hi I've had a echo and angiogram with all clear clear .I'm.on diltiziam and have gtn spray at its worse I can get lightheaded and d it can go up my neck and jaw .Get very tired with it too
I hope you get some answers and the right treatment . some days I think I'm doing better and do a little more and then get the tight band and chest pains pains .it's such a strange intense feeling .Thursday evening I used gtn spray about 5 times and couldn't settle in bed so dosed on sofa. Fingers crossed for you x
Hi, that's exactly what I've been like. I found on bad days I couldn't get comfortable in bed because if I lay on my back got that tight band feeling and so could only sleep on my side.
Keeping the air in the bedroom warm helps me - I have turned the radiator on to max to warm the room up before I go to bed
I hope you manage to find a specialist who is experienced in this condition.
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