feeling frustrated as diagnosed in May this year with coronary artery spasms and angina pain. After going on isosorbide mononitrate 85mg I’ve Been really well for nearly 5 months until 2 weeks ago when all the symptoms I was experiencing before going on medication came back. Soon as I do anything that raises my heart rate, from vacuuming to stacking shelves at work. I get so short of breath, lightheaded, heavy weak legs and if I didn’t stop, I get pain in centre of chest and have to take gtn spray.
I’ve had an increase of medication to 120mg but 2 weeks later, it’s not helped ☹️
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Myjemjem
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I expect you’ve done all the usual things you can do for yourself like diet and exercise, but there might be something on the British Heart Foundation website that you hadn’t considered so you might want to have a look there.
Also, the cardiac nurses at the BHF are very helpful, you could give them a ring.
Whether you see a cardiologist again or not depends on many factors, one of which is whatever the local health authority feels is advisable.
If your letter from the cardio says you will be seen again then you might call the cardio’s secretary and ask, but if it says “back to GP care” then you’re not going to be recalled.
Your employer has a duty to treat you right, maybe work shorter hours or something for a while.
Do you have a lived experience of vasospastic angina? Often people with vasospastic angina don't have the usual risk factors of heart disease and can exercise.
Vasospastic is not well understood and often as patients we have be persistent to be able to access the Cardiology care we require.
I agree, Milkfairy. We do have to be persistent to be able to access the cardiology care. I have explained to family and work about how variable this condition can be. I don't have any of the usual risk factors. I can exercise when temperatures/air pressure changes are not worsening my angina. Currently starting to become much more limited due to temperatures dropping. Active last week but I was completely debilitated last night.
I completely understand getting down when the medication doesn’t work. I also gave microvascular angina. I had had a few chest pains on dog walks year before last and had actually struggled in the cold for a few years but didn’t realise it was anything serious until we went away for a weekend in April for my birthday. I couldn’t walk more than 100 yards without chest pain. Cut a long story short I was put on a cocktail of meds including blood pressure and cholesterol drugs as both are high, 60mg Isosorbide Mononitrate and a gtn spray which I ended up taking every time I went out as I still couldn’t walk far. I had an angiogram in November which showed clear arteries but the chest pain started whilst the angiogram was being carried out and they had to give me gtn spray. They then diagnosed microvascular angina and doubled some of my meds and added in more. Nothing changed so I called the cardiologist secretary and was able to book a telephone with him where he doubled the Isosorbide to 120mg and put me on the list for another angiogram where acetylcholine will be injected which shows the smaller blood vessels and should confirm the diagnosis (or not). I completely know how you feel I had been much better for about 3 weeks and felt I was getting my life back then went to see a relative in hospital on Sunday and had to take the gtn spray after walking up one flight of stairs. It’s so frustrating
I was offered cardiac rehab but then the cardiac nurse called and said as I hadn’t had a stent or anything I wasn’t eligible. Have you been offered an angiogram or any other tests? I was told by a cardiac nurse that I was still under their care for 6 months and could request further tests etc in that time. Are you still in that 6 month period in case this is true for you too?
It seems we have to fight hard for recognition and care but it does sound like you need to speak to the cardiologist and possibly ask for more tests At the moment the cold air is brutal and it seems to be a common trigger. Although this is my first year being diagnosed I’ve found so much info on here as to how to try and deal with this condition
The cardiac nurse also referred me to wellbeing who have called and recommended me for adjustment talking therapy, I’m expecting that sometime in the next five years!
So many people on here are so helpful it’s really a lifeline, I hope you get a referral back to a cardiologist
The British Association of Cardiovascular Prevention and Rehabilitation, in their core standards, recommends that people living with microvascular and vasospastic angina are offered cardiac rehab.
Microvascular and Vasospastic angina are types of ischaemic heart disease.
I suggest you ask again for cardiac rehab .
The refusal is a reflection of the lack of knowledge about microvascular and vasospastic angina by the cardiac rehab staff.
Acetylcholine is used to diagnose problems in the large coronary arteries rather than the small vessels.
Normal functioning coronary arteries should dilate when acetylcholine is injected into the coronary arteries. If the coronary arteries almost close, accompanied by significant ECG changes and chest pain, then coronary vasospasms, vasospastic angina is confirmed.
My vasospastic angina was confirmed by an angiogram using acetylcholine in 2014.
My coronary arteries go into transient constrictions, coronary vasospasms though my Cardiologist suspects I also have microvessels vasospasms too.
Microvascular angina is due to the inability of the small to dilate or stay dilated in response to extra demands like exercise. During a functional angiogram another chemical adenosine and guidewires can be used to measure how the blood flows in the small vessels, from these measurements microvascular angina can be confirm.
It's good to see that more people are being offered functional angiograms to test for microvascular and vasospastic angina.
Sadly the ongoing treatment and care pathways are still not in place.
Thank you so much for this information, I’m finding it all very confusing. I definitely got the feeling that they weren’t interested in doing anything more. The cardiologist even said after the angiogram I won’t see you again, even though he’d just diagnosed microvascular angina. I will email the cardiac nurses with that info and try to get on the rehab course.
I’ve found your info and links so helpful, so thank you again.
I suspect Cardiologists and Cardiac nurses try to hide their lack of knowledge by ignoring us as a group of patients.
The European Society of Cardiology's 2024 Management Guidelines of chronic coronary syndromes covers Angina non obstructive coronary arteries ANOCA in depth for the first time. See section 5.2.
There are quite a few of us on the forum who live with microvascular or vasospastic angina and hopefully they will be along to share their experiences with you too.
Hello Myjemjem, I have been living with ongoing problems related to what is thought to be Vasospastic Angina for about a year. I take 100 mg of Isosorbide Mononitrate and GTN. I experience the symptoms you describe. I started getting out of breath and chest pain hoovering etc. last winter. Symptoms improved during the milder temperatures of spring and summer. My symptoms have increased recently due to the sub zero temperatures at night. I had a particularly bad night last night and lay awake with chest pain. This chest discomfort increases/decreases
depending on temperature/wind/dampness/changes in air pressure. My IM was increased during the summer. To be honest its difficult to know how much of a difference the increase in dosage has has made because my chest pain can be variable depending mainly on the weather.
I understand your frustration - I feel frustrated as well.
I was diagnosed with prinzmental angina (vasospasms) November 23.I think the cold has been triggering my events for the past 12 days now with me ending up in A&E on day 10 ☹ they wanted to keep me in due to rising traponin readings over 6 hours but I had my grandaughters 3rd birthday the next day so after an awful lot of convincing them if I got worse I would go back in they let me go home. I tried to do some Christmas shopping with hubby traipsing around the shops and after 3 hours with one stop for lunch my legs got very heavy couldn't lift my arms up to get things off shelves to have look at and then the burning pains started (my first indicator) we went back to the car and the chest pains started and lasted about 50 minutes. So yes cold weather seems to be a trigger factor and yes milkfairy I did have a scarf on BUT NO I did not have over my mouth as I felt bit silly doing that. Next time for sure when I'm out and about I WILL have scarf over mouth as advised. 😊
Awww thank you milkfairy. I haven't had a review or checkup with my cardiologist since my first heart attack 2022 when had my second heart attack 2023 was referred back to doctor (trouble is you speak to a different doctor or locum each time, never get a face to face)Feel very much abandoned.
I've got a doctor phoning today and I think that's only because I was in a different hospital and they said they were going to write to doctor.
I will ask if my isosorbide can be increased during winter time I'm on 100mg a day as it is and 240mg tildiem morning 180mg tildiem evening , not sure if that's the max as it is.
I know exactly what you are describing 'burning pains' - I experience this and it's awful. When my problems first started this intense burning type of pain was so infrequent that I put it down to rushing my food - indigestion. I now know it's angina pain.
Speak with your Cardiologist about Adizem (Diltiazem) it's a Calcium Channel Blocker often prescribed alongside Isosorbide for Vasospasm - helped me a lot.
Your story is not unusual. Suggest that you go to cardiologist and tell him/her that the medication has not worked. It’s taken 3 years to get mine under control. I take Amlodipine, Nicorandil, Ranolazine and Isosorbide to control my vasospasms along with Ramipril and Ivabradine for bp and pulse. Milkfairy gives good advice, ask for a second opinion from an INOCA specialist if your cardiologist is not getting to the bottom of this.
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