I have been diagnosed for 12 months with MVA but symptomatic for 3 years, currently under Southampton General Hospital and Royal Brompton for my care. I am on Adizem 240mg OD, Isosorbide Mononitrate 30mg TDS, Nicorandil 10mg BD, Aminophylline Hydrate 225mg OD, Imipramine Hydrochloride 25mg OD (New), Naproxen, GTN, unable to tolerate Ranolazine.
I wanted to gather some further advice from those who have the joy of this condition in when you decide you need further help and what that help looks like?
I have had two admissions this year - pretty good for me, when I have had GTN infusions for 24 hours and I call this a reset as I can then go for months being controlled and then I cannot control the discomfort and pain associated with MVA.
So, when do you say enough is enough and things have changed its time to go to ED?
Thanks in advance
Written by
Claireosully92
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If you are in pain you need to go to hospital. I tend to go into hospital about once a year usually in the winter. I go in when I have run out of coping strategies and I need a respite.
I have very good support from my local Cardiologist and he and I wrote my admission plan together.
It is helpful to establish a good relationship with a Cardiologist and the ward staff at your local hospital.
I use a TENS machine and attended a Pain Management programme and use CBT , yoga, Tai Chi , Mindfulness meditation and breathing and visualisations to help me manage.
I suggest you ask to be referred to a Pain Management Specialist.
Pain whatever the cause is very challenging to live with and can undermine your emotional well being.
The BHF has some updated information about MVA which you may find helpful.
No matter how much people tell you not to take risks, to always dial 999, they will never mind etc, there is always a threshold somewhere. Most days I get close to it, and wondering if I’ve reached it, adds to the stress and (presumably) pain.
Thinks aren’t that stable or predictable for me yet. So is have no real advice to offer, just fellowship that you are not alone.
I cope with GTN topping up the drugs, but I also use breath control techniques a lot (I’m an ex musician, taught coping strategies for stage fright, done a bit of Alexander and Mindfulness).
I can/do take Ranolazine, so this might be keeping me the right side- you never know what it would be like without this stuff. I have low blood pressure, and a dog who warns me when this is dropping before I realise- which is great considering he isn’t trained, although his technique of tripping me up until I sit down could do with refeinement😃.
Remember when your mum would say to always make sure you have decent underwear in case you end up in hospital... just realised I do that every morning now😀
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