Just wondering if anyone has been prescribed decent pain relief to take at home instead of having to call an ambulance? I’ve been admitted 5 times in the last 14 months with severe pain due to VSA which the GTN didn’t touch. Mine can last almost all day and go on for several days at a time once it’s been triggered and if I had some codeine based painkiller at home it would be a lot more bearable. When I’m in hospital I usually get IV morphine and then dihydrocodeine which is such a relief. I’m also on loads of medication including Nicorandil and isosorbide mononitrate.
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I wish they would prescribe a painkiller strong enough for those who have severe spasms like myself, and like yourself too. I do think it would decrease the number of trips we make to the hospital and in turn, less pressure on their services.
I do not always find relief with my GTN spray, and it can be exhausting going back and forth from A&E. I did ask a specialist in this condition about a possible opiate for the pain, to which he declined on the basis that there is not enough evidence that opiates help spasms. This is just one opinion however, and I know from a few patients with this condition where their cardiologist is very much with the agreement that opiates can stop the cycle and severity of spasms and as a result, have an opiate to take at home under their guidance and supervision.
I’ve heard good things about GTN patches, but you may already be on those. I have yet to start them.
I’ll be following to see what others suggest. I will be seeing my GP on Wednesday, and I will request an opiate/pain killer but he is extremely hesitant to prescribe without the input of a specialist.
I hope you have better luck with your cardiologist.
Thanks Tos92, I’ve got a cardiac review coming with my consultant and my GP is in touch with Cardiology so I’ll suggest it. I guess they always want to exclude a heart attack or abnormal heart rhythms but so far I’ve been ok. I hope you get more relief yourself.
That’s good to hear you have been ok so far and I understand the importance of ruling out a heart attack. I think a small dose of an opiate or painkiller to take at home could be helpful. If I went in every time I couldn’t manage a spasm at home, I’d be in the hospital probably 3 times a week for IV morphine. I hope the review goes well with your cardiologist.
Taking morphine at home can be detrimental to our well being. It can hide a heart attack.
This is the advice , I have been given by every Cardiologist including several world experts in caring for patients with vasospastic angina, that I have seen over the now nearly 12 years of living with vasospastic angina.
A Transcutaneous electrical nerve stimulation TENS machine are recommended by several Refractory Angina centres.
Every patients care plan is different. I am aware of a specialist in INOCA who does allow in the rare instance for patients to take an opiate at home under their supervision and guidance. These patients are monitored and they are required to communicate with their cardiologist when they have taken it so that they can determine whether an ambulance needs to be called.
I’ve previously had a paramedic tell me if I had a stronger painkiller available as the wait for an ambulance was a couple of hours and he could hear how much pain I was in. I have nothing available apart from paracetamol, GTN, and to use breathing exercises during a severe spasm. Needless to say, none of these methods work to break the cycle during a bad episode.
Moreover, morphine is rarely prescribed and I would think that if a cardiologist or any physician is prescribing this, then they have taken many factors into consideration thoroughly.
I am open to considering other types of pain management however, where I am currently in my journey of VSA, I have so far been mainly resistant to treatment both medical and non-medical.
I suggest you ask for a individualised careplan be written for you and be referred to a Pain Management Programme.
I am given morphine by paramedics at home before being transported to hospital after my ECG is performed.
You are indeed at the beginning of your individual journey.
I have lived for over decade with vasospastic angina and been involved as a co author with several world expert Cardiologists about the management of vasospastic angina so perhaps I am further on in the journey?
It's important to make the distinction between microvascular dysfunction and coronary vasospasms when using the term INOCA/ ANOCA.
Coronary vasospasms are thought to be more likely to lead to a heart attack than microvascular angina.
Morphine is also a further cause of concern as it can lead to dependency and addiction so needs to be used with great care.
Cardiologists are not specialists in pain management.
Thank you both Milkfairy and Tos92 for your helpful comments. I feel lucky to a certain extent as I’m always treated with a great deal of sensitivity and empathy by the paramedics who give me morphine after the ECG and then when I get to A&E. I’ve never had to wait for an ambulance either or wait outside the emergency department, unlike so many others.
Am I really going to have to cope with this for the rest of my life? I’m terrified I’m going to have to give up work or my bosses will get fed up with me. I always rush back to work straight after being discharged even though I feel awful as I’m so worried about it all.
It good to hear you have had compassionate care.I have always found the Paramedics wonderful. I am given IV morphine by the Paramedics after my ECG is checked.
Vasospastic angina is a long term condition. During the first few years I found it difficult to accept, I would back to work too soon and this wasn't helpful to my physical and mental well-being.
I had a very physically and emotionally demanding profession so eventually I decided to take ill health retirement.
It was not easy to give up my career of 30 years.
It was however the right decision for me.
Have you asked to have a review by an Occupational Health specialist? You are covered under the Equality Act and can ask for reasonable adjustments to be made to your working environment.
I hope you find a way of living the best you can with vasospastic angina.
I too work in a very demanding profession which I absolutely love and I’m too young to be medically retired and I’ve still got a lot of mortgage to pay. I’ll just have to keep going for as long as I can.
I've found it all hard to accept. Diagnosed with microvascular angina with spams (they did catch one on ecg). I kept thinking I'd get better. But nope, good weeks, bad weeks. That does mess with your head. Have struggled with it since tbh. It's changed my life really and I've had to change with it, still adjusting really. I arrange things that I used to do. Then drop out (a 10k race for example, and i dont drink anymore so pubs / clubs dont appeal). Currently looking to reduce my working hours to 30 as I'm constantly tired and if it's a stressful week I struggle with my diet and exercise more and u know weight gain doesn't help me physically or mentally. Its one think I think is lacking in the UK. Post diagnostic care. I got diagnosed, put on a medication and referred back to the GP. Mentally I struggled.
I was offered counselling but didn't find it helpful really. It was a self referral generic counselling thing. I don't think the person I was talking to could relate at all. I kind of decided I was on my own, dropped out of that and just had to get on with it. I know I want to go part-time. Reducing my hours would help/does help. I've learnt this to my peril. I went back full time thinking I'd be fine etc. A kind of being in denial thing. It is such a shame they don't offer a kind of readjustment programme for all heart patients when they get diagnosis. No matter what they've been through. Because from what I've read it comes as a huge shock to us all. Even if you've suspected it.
I agree being faced with any long term illness can have a profound affect on our mental well-being. Heart patients' mental health needs do not seem to be prioritised.
At my local hospital they have just built a Maggie's Centre for cancer patients.
It would be fantastic if we hearties could have such centres too.
When I was in hospital a few weeks ago, I had two foot massages done by a volunteer masseuse, it was so calming and relaxing.
I am currently creating a care plan in conjunction with my cardiologist.
Unfortunately, to be referred to a pain management specialist will take some time. It took me near enough a year to find and see a specialist in my condition, having pursued both NHS and private routes therefore, I gather I will remain symptomatic in the interim before I have the opportunity to meet a pain management specialist. This will mean more frequent trips to A&E and as I work, it is not always practical or ideal for me to be in hospital, especially once the spasm has passed and they cannot find anything significant on presentation to A&E. This leaves me pretty exhausted and fatigued for work the following day.
I have had a MINOCA from a coronary spasm therefore I am aware that coronary spasms can cause heart attacks.
Cardiologists may not be pain specialists but they are the closest to medical advice and help that I have at the moment and I will be relying on them whilst waiting to see a pain management specialist either way if my GP feels it is suitable to be referred to one.
Having at home management to better manage/control severe spasms would be helpful in my case, given that I work and have other commitments, hence the suggestion of a low dose opiate or stronger painkiller for myself. This may not suit others, but for someone like me who continues to have very symptomatic episodes, it is something I am willing to consider.
Good luck, I hope you find a safe way to live with your pain.I live with severe pain too and I know who debilitating this condition can be. The toll of living with acute and chronic pain can be considerable.
As a group of patients we are at risk of developing PTSD as a result of our pain not being managed appropriately.
I was given a GTN patch to wear while undergoing my CT scan and felt quite well and could only put it down to the GTN patch but I've not been prescribed them yet.
I am sorry you have been experiencing worse symptoms of vasospastic angina.
I use a Transcutaneous electrical nerve stimulation TENS machine and hot water bottles.I increase my GTN patches and my isosorbide mononitrate as agreed by my Cardiologist when I going through an unstable period.
I use oxygen, listen to music. I use breathing and relaxation techniques.
I rest and then rest some more.
My Tildiem retard has just been increased to 360mgs twice a day. Along with nicorandil, clopidogrel and statins. I take 2 paracetamol and codiene tablets at night
I go to hospital if I can't manage anymore. I am always admitted and treated with IV GTN and IV morphine via a patient controlled analgesia system.
I have an agreed careplan which was written by my Cardiologist, Pain Team, Nursing staff and myself.
I am usually in hospital for about 10 days. I end up on very high doses of GTN before my coronary vasospasms settle. It then takes a long slow wean from the GTN over several days before I can go home.
My Cardiologist says I must go to hospital if I can no longer manage and not take morphine at home. I do have dynamic ECG changes and a small rise in my troponin blood levels when I go to A&E.
My ECGs are usually almost normal before I go home.
Taking opiates at home could mask an episode of acute coronary syndrome including a heart attack.
Opiates are also addictive.
I agree it's hard work! We live between a rock and a hard place.
I had to take early ill health retirement and I have had to modify what I do.
I was in hospital in last November and February a total of 22 days in the last 4 months.
I came home just over a week ago and I am exhausted as I feel as though a bus has driven over me.
I attended a Pain Management Programme, which I found helpful.
I suggest you ask to be reviewed by your Cardiologist and ask for a review of your medication, perhaps ask about a care plan and maybe ask your GP to refer you to a Pain Management Programme?
What a terrible condition to have. I really admire you all having to deal with this. How are you able to tell if it is a vasospasm and not a heart attack? Is it a condition that comes with age or do genetics play a role? I know nothing about it but reading about it here really opens ones eyes . Take care.
The underlying causes of vasospastic angina are not completely understood.
It is thought to be due to the inner lining of the blood vessels not working properly, endothelial dysfunction along with a hyperactivity of the smooth muscle in the artery walls.
It could be environmental pollution, how we respond to stress, there is at yet no clear genetic link found.
You ask a very good question.
'How are you able to tell if it is a vasospasm and not a heart attack?'
You don't which is why some people end up with repeated hospital visits, some people do experience heart attacks and others over time develop heart failure.
Thanks for your answer!I've had 2 episodes of something where it felt like I was swallowing a rock and went all clammy . I had to sit down in the shop where I was. But it was transient. But the pain was awful so if you are suffering that for hours and not minutes like my little episodes I really feel for you.
I see my cardiologist once a year( since my ablation). I don't bother with the GP - prefer to go directly to the cardiologist. But I live in France so it is easier and much cheaper. How is it diagnosed?
Hi Lilypocket, the problem is you can’t tell the difference and as I have inherited cardio vascular disease in my LADV they always presume I’m having a heart attack.
Hence all the trips to A &E. which in themselves must be exhausting What a difficult pathology to live with ( amongst the many others for members of this site )All the best.
I sympathise very much with those having to work and manage this condition and those of you feeling severe pain. I’m currently waiting to see a cardiologist I have suspected vasospastic angina my pain is manageable I feel a tight squeeze around my chest which can last a couple of hours and I get breathless but the pain is not severe however I’ve been feeling lightheaded and nauseous too and was wondering if anyone else with this condition felt like this?
Thank you yes I hope so I think I may need more tests to confirm and check the stents I’ve been so well for so long thought I’d got away with it but it’s back!
When I was more poorly last month I was nervous about going in the bath/shower when alone in the house because I would get shortness of breath when rinsing off my hair under the shower. I had to take my GTN 10 mins beforehand. I was worried I be found collapsed on the floor! It does take your confidence away.
Yes. I was prescribed Oramorph prn. For use at home only when gtn spray has not been sufficient. It was given after multiple long stats in hospital. I have a brilliant angina specialist. She advocates for me. They don't like to give it though so you may need to push and prove it will keep you from continued emergency admissions.
I have a written care plan.
Gtn then wait ten mins. Gtn again. Wait five minutes. 2.5 oramorph. Wait 20 mins. 2.5 oramorph. Still no change ring ambulance.
More often than not I don't get to hospital stage. If I do it's to check for heart attack. If any symptoms unusual I go straight in. Breakthrough angina I ring specialist to consult.
I know of another patient that also takes Oramorph at home for their spasms and that it can be effective, as well as reducing how often they go into hospital.
Do you have a diagnosis of vasospastic or microvascular angina?
I’d be interested to hear about whether you have any side effects to the Oramorph and how often you feel like you need to use it.
Having been in hospital on Friday on morphine, after almost two weeks of ongoing pain, I was finally pain free on Saturday. Then it came back. Today I decided to test my legs to get some milk and I ended up with the emergency doctor in the village where I live. She doubled my isosorbide mononitrate dose and gave me a prescription for dihydrocodeine. I really hope it works, I’m at the end of my tether.
I was on 60 mg but as of today I’m on 120 mg (including nicorandil 20 mg twice a day). To be honest I’ve no idea what will happen next if it doesn’t improve, I’ve never been through such a long bad patch before. Possibly cardiology via the GP assessment unit for IV GTN? That’s worked before, but I don’t want to be re admitted.
Tos have you ever been admitted for treatment with IV GTN?
I have now been admitted nearly 20 times over about 12 years for treatment with IV GTN.
It isn't trivial nor is it routinely offered.
I have a written careplan to guide the staff how to care for me. The requirements of patients with vasospastic angina being treated with IV GTN are different to other patients who require IV GTN.
It is usually offered to patients living with a confirmed diagnosis of vasospastic angina.
It can take upto 48 hours for some patients coronary vasospasms to settle followed by a very slow reduction of the infusion over days.
Some patients require very high doses of IV GTN over several days.
It requires being admitted to a cardiac ward, on continuous cardiac monitoring, 2 hourly blood pressure checks over 24 hours, regular ECGs and troponin blood level checks.
It can cause a really severe headache and drop your blood pressure dangerously low.
The infusion is slowly increased overtime then very slowly titrated down. It takes me days to wean slowly off the GTN. I tend to stay in hospital for 10 days fir this reason.
I can experience severe rebound coronary vasospasms if my IV GTN infusion is turned down too fast or there is delay in the changing of the syringes, which happens everytime I am in hospital. I had two breaks in my IV GTN infusion during my last admission due to the nurses being too busy.
The nurses work very hard but even the best nurse can't be in two places at once.
I also have a patient controlled analgesia system of morphine. I am able to press a button and I am given a small dose of IV morphine. The amount of morphine I can self administer is carefully controlled so I can't overdose on morphine.
The Pain Team nurses come to see me on the ward everyday.
I have regular doses of IV antiemetics, anti sickness medication such as Ondansetron.
I have three cannulas, one for the IV GTN which overtime irritates the veins, one for my morphine pump and one for anti sickness medication.
In the past I have had my IV GTN infusion abruptly turned off by Cardiologists who did not understand my vasospastic angina.
As a result I had severe coronary vasospasms with lots of chest pain and dynamic ECG changes.
Hi Kind51, so sorry to hear you’ve been so unwell. I’d like to be able to say that the warmer weather improves things, but for me it leads to a whole lot of other issues. Everyone is different however and you may respond differently. There are other medications available but they will always wait to see how you respond.
I have stable angina,spasms and microvascular. They're basically covering all options I reckon. 😂 It's a low dose but in most cases along with the gtn it does help. Pain relief but also seems to help the spasms.
I am usually given oramorph on IV if needed in a&e. Alongside Ondansatron if feel sick. I also have Cyclizine for use at home for nausea. I've also been put on gtn infusion before too in hospital.
My specialist is amazing and advocates for me massively. She was instrumental in getting my care plan sorted and getting me the oramorph. She knows I'm extremely careful with it.
On average I'd say I use it maybe once every three or four months whereas I'd have previously just been on a trip to a&e.
I’m still waiting to have a consultation but I think they may do I’m ok but any exertion makes me quite breathless I’ve been using my gtn spray when this happens and it does ease the tightness in my chest so I’m managing with lots of rest for now. I haven’t felt the need to go back to A and E so just waiting and keeping a note of my symptoms.
A heart attack is diagnosed when a person has certain ECG changes, accompanied by chest pain or other symptoms of angina which can be breathlessness, thight chested, nauseated, sweating, radiating pain, extreme tiredness and sense of unease.There is a rise then fall of troponin a protein that is released when the heart muscle is damaged.
Depending on the reference lab used a troponin blood level about 16ng/L in women indicates that a heart attack may have taken place.
When I go to hospital I have the symptoms of angina, dynamic ECG changes and small rises in my troponin blood levels.
So a episode of acute coronary syndrome rather than a heart attack.
Yes seems to come and go I’ve been great for years u til now although with hindsight I have been feeling more and more tired and had a few fainting spells over the last few months just didn’t connect it to my heart at the time.
I’m sure the summer and warmer weather will be good for us.
I also had a very senior Cardiologist who on the morning ward round said I didn't need IV GTN and that he'd get me home for lunchtime.
The nurses turned my GTN down too fast despite my protests....Dr knows best.
I had huge coronary vasospasms, ST elevations on the monitor, heartrate through the roof. All the alarms blazing and all four nurses on duty instantly around my bed.
I met the same Cardiologist a few years later after, I had had my angiogram with acetylcholine confirming my diagnosis of vasospastic angina.
He tried to ignore my careplan, telling me again I didn't need such high levels of GTN for such a long period of time.
Having a confirmed diagnosis gave me the confidence to look him in eye and say quietly and firmly,
' please look at my angiogram results, Your decision about my care last time, lead me to have great deal of pain.'
He said nothing, didn't move.
I said it twice more, then he replied ' okay I'll speak to your Prof'
He came back a few days later, looking sheepish.
He said to me, ' you have vasospastic angina ' followed by
' you have my upmmost sympathy having to live with your severe symptoms '
I now have a Cardiologist who listens and supports me.
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