New to this 😳: Hi all, I have... - British Heart Fou...

British Heart Foundation

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New to this 😳

Crochetgirl
Crochetgirl

Hi all,

I have prinzmetal angina which is a bit of a downer as you don't know when it will strike. Anyhoo, I saw the cardiac team yesterday (totally obnoxious man) and he has agreed to change my meds as the others were not working. I'm so exhausted after 5 full days of continuous chest pain, which the GTN spray was barely working. So let's hope the new meds work....!

Have a good weekend folks 😊

8 Replies
oldestnewest

I was treated for artery spasm for 11 years and now told it is the veins of the heart have disease and spasm, I was on amilodpine now changed as it has started again regular, it does settle, don’t get stressed or tired, find the foods that can trigger, high coffee and chocolate, for me. Stay active and don’t be afraid to call 999 if not going with gtn Good luck!

Crochetgirl
Crochetgirl in reply to Abergele

Hi Abergele,

Thank you so much for your encouraging words 😊

It's been just over a year since I was diagnosed, although I have been been complaining of chest pains for year's.

I have other chronic health conditions, but I try to keep as active as I can. Working on reducing the stress 😂 but it's a "work in progress" shall we say 😁

I think if the Dr (whom I have seen on several occasions) at the cardiac clinic was less condescending, my stress levels wouldn't be as high. In future I will ask to see someone else.

Thank you for your reply 😊

DD13
DD13 in reply to Crochetgirl

Hi,

I have just been given a Nitrate tablet, in place of the GTN spray. Only started taking it yesterday, dosage of half a tablet once a day, to take in mornings. Had a headache for most of the day, but no chest pain at all. Today I only had a headache for a couple of hours. Still no chest pain. I'm still getting the breathlessness, I can manage that. But I won't exert my self by going up the hills and over the cliffs, until my next hospital appointment. As I was told not to.

Regards Dee.

Crochetgirl
Crochetgirl in reply to DD13

Hi Dee,

Yes, I'm on as of yesterday 75mg of the SR gtn tablets and the maximum dose of Dilitiazem. The Cardiac Dr has said that the Isosorbide can be increased to 100mg.

If that happens they want to change my main tablet (Dilitiazem) to something else. Unfortunately this has been going on 13 years and it's only now that I have been diagnosed with this type of Angina.

I'm just weary of fighting with Dr's to try and find out what was wrong and get the correct medication.

Good luck 😊

Regards S

Milkfairy
MilkfairyHeart Star in reply to Crochetgirl

Hi Crochet girl,

I live with vasospastic angina in my small vessels and Coronary arteries more commonly known as Microvascular Angina and Coronary artery spasms ( a more modern name for Printzmetal Angina)

In my experience the less a medic knows about a condition and hence potentially embarrassed about their lack of knowledge the more as you describe obnoxious they can be.

MVA and CAS are difficult to diagnose and can be a challenge to find the correct treatment. I have worked in partnership with my Cardiologist to try and find the best combination of drugs for me. It is trial and error.

As others have said know your triggers.

Mine are the cold or sudden changes in temperature, mental and emotional stress.

Coffee, adrenaline ( used in local anaesthetic at the Dentist and epipens) artificial sweeteners and Chorizo sausage.

I can exercise especially during the summer but if I do too much I will get a lot more pain episodes in the evening and at night.

I suggest you seek out a Cardiologist who is willing to work in partnership with you it makes all the difference in helping to live with this challenging heart pain condition.

Good luck!

My question is, how do you know if it’s microvascular spasm or coronary artery spasm? I was diagnosed with CMVD, microvascular spasm but recently had an angina attack when I was losing consciousness, extremely nauseous, cold sweat, legs felt very heavy like they wouldn’t even support me ....... much worse than my usual angina attack scenario. The cardiologist I saw was very condescending, hadn’t even looked at my file when he told me he thought my problem wasn’t heart related at all but gastric... I had to ask him to check my file for previous test results which showed spasms.

Milkfairy
MilkfairyHeart Star in reply to Grandma63

Oh I share your frustration Grandama 63!

The symptoms can be very similar. It doesn't really matter your pain should be treated appropriately whatever the cause.

The NHS Constitution states that we all have the right to be treated with respect and dignity.

I had an angiogram with acytelcholine which showed ECG changes ST elevations spontaneous and induced coronary vasospasms in both my coronary arteries and microvessels. I needed to be given morphine due to the chest pain I felt.

This is unusual most people have either one or the other.

There are lots of theories about the causes but MVA and CAS tend to be separate conditions

I have a written Admission Plan which tells the staff how to care for me when I need admitting. I always have to ask the staff to read it along with my angiogram results. Unfortunately not all the staff do and I have met the attitude you describe from some Cardiologists at first.....they then read my plan and results and my plan is followed.

I have 3 written apologies from Cardiologists when I have complained about their approach to my care.

The problem is that the nursing staff are also unfamiliar about MVA and CAS too but usually once they see how the pain effects me they care for me really well.

Cardiologists hate not knowing and we unfortunately live with a poorly understood and recognised conditions.

I actually heard a Cardiologist say that when confronted with this situation their default is to discharge the patient!

My advice is to complain through PALS along with a copy of the BHF information leaflets about MVA and CAS and Prof Colin Berry's Ask the expert article in Heart Matters Magazine.

Oh and Prof Peter Collins information about MVA on the Royal Brompton website. Then ask to be referred to a Cardiologist who has some knowledge or is willing to acquire the knowledge to care for you appropriately.

We all need to be our own advocates to educate the healthcare professionals we encounter. We maybe only a small voice by ourselves but the more of us who join together will make the voice louder!

Excellent advice....!

However, I suffer from Fibromyalgia and my obnoxious cardiologist reg, told me that my type of angina micro muscular, CAS call it what you will, goes hand in hand with fibromyalgia.

I answered yes I knew that as I had done a little research. His answer was an eye roll 🙄 and "Dr Google strikes again". I was momentarily dumbfounded and answered "no not Dr Google, but the British Heart Foundation". This is the attitude I have to put up with. I live in Northern Ireland, which basically has all the rules, regs etc as England.

But, I didn't know you could write your own admittance plan etc. How do you go about doing that?

I plan on writing a complaint about the cardiologist reg his attitude is appalling.

Thanks for all the information!

😊

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