Refractory Angina

[Gibson01]

Following a PET scan, I have just been advised that I have Refractory Angina and that pain management is only course of treatment available. At present I have almost daily attacks of unstable angina and stable angina with very little stress or exercise. Anyone else been diagnosed with this condition and what treatment have you received?

[Milkfairy Heart Star]

HelloI have lived with refractory vasospastic angina for 9 years.

I have most of my pain at rest and I am often woken at night with chest pain.

It has been a journey as they say to learn how to live with my daily angina pain. I also experience migraines too.

There are quite a few other forum members, who also live with chronic pain too. Hopefully they will share their coping mechanisms with you too.

There is no right or wrong way. Just what helps you.

This is what I find helpful.

Learning to pace myself and trying not to do too much when I feel well.

This is still work in progress!

Keep a diary of your symptoms to try and work out your triggers.

Mine are the cold, mental and emotional stress.

Doing too much physically.

Learn to pace, no boom and bust

Rest when you need too.

I attended a pain management programme. I learned through cognitive behavioral therapy to respond emotionally in a different way to my pain.

I use Mindfulness meditation, yoga and Tai Chi. Breathing and relaxation techniques including self hypnosis.

I exercise as much as I can.

I have also had the support of a Clinical psychologist.

My family are very important as well as my dog Millie.

There are other more invasive options and medications.

This includes stellate ganglion blocks where they inject a local anesthetic into a nerve in your neck.

A Spinal Cord stimulator where permanent leads are inserted into your spine.

Also various medications such as pregabalin or low doses of antidepressants such as imipramine.

I said thank you, but no thank you to these options.

However keep an open mind and don't feel that pain management is just an only option.

Good luck!

[HectorsDad]

Hi,

I have microvascular angina as a result of a major heart attack two and half years ago. Fortunately my employer provided good insurance, so I was able to retire early (I’m 59)

Milkfairy gives great advice!

‘Refractory’ simply means not responding to treatment, and implies they can’t identify the cause. Keep pushing and raising the possibility of a microvascular problem- some cardio teams are not as hot on this as others.

As for coping- I think you are on the right track. Don’t try to get back to what you used to do, develop new things to enjoy that work for the new you. I changed my hobbies significantly and it has been a blessing. I have fun not regrets.

And never be afraid to get angry with your illness from time to time: sound-off, swear or whatever. If you don’t have another safe space- do it on here, we will understand!

[HectorsDad]

Refractory in other contexts is defined as obstinate. I think that is a good understanding of my pain!😁

[Milkfairy Heart Star in reply to HectorsDad]

Obstinate is indeed a good word to describe our pain that just doesn't give over!

[Skylajean]

My lifesaver for my case is the GTN spray and Nicorandil. Not a cure obviously but helps a lot. Have to make sure i stay stress free {this is hard as i am a stress head} but i exercise daily and try to eat well, not sure if this does any good but makes me feel better. Hope you get sorted soon its not nice is it.

[Gibson01 in reply to Skylajean]

I am heartened to hear that Nicorandil has made a difference for you. Consultant added that to my medication last Thursday and I do seem to have improved a little. I am going home from hospital tomorrow so will be able to judge better then. I have always exercised regularly and try to eat well so no hardship in doing that. One or two people have suggested meditation and yoga to improve the overall state of mind. I’ll give that a go I think and also see how referral to the pain management clinic goes. Mercifully I don’t have a lot of pain, it’s the breathlessness , panting episodes and nausea I find disconcerting.