For those that have one of these 2 wretched conditions, can I ask what does your gtn usage look like? I mean the frequency you need to use it for angina. I have seen an increase in my usage as I seem to have fallen into the refractory category where all the usual meds for this condition are not very effective but the gtn works for me. I will go through periods of multiple days in a row needing 1 tablet or spray or every other days. It was much less frequent in beginning but it seems to have settled with this pattern.
So I’m wondering what others experience s are with this and did it change over time. Clearly there are rougher patches for sure in us all.
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Andy5S
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I have lived with refractory vasospastic angina for over 12 years. I don't respond to my even high doses of medication.
I don't personally use sublingual GTN spray as it works briefly if at all and then I experience worse rebound coronary vasospasms.
There is growing evidence that GTN spray doesn't work so well for people living with microvascular angina.
During the warm sunny months of the year I feel much better and I have fewer episodes of severe pain.
I reduce my isosorbide mononitrate, nitrate patches and Diltiazem tablets during the summer months.
I take each day as it comes savouring my periods of fewer symptoms.
I managed to go walking in the Lake District in the summer
I am however starting to having more frequent episodes of debilitating chestpain.
So I am now increasing them back to my higher winter doses of Diltiazem 360mgs twice a day, isosorbide mononitrate 60mgs twice a day and 20 mgs nitrate patches.
This is my pattern every year from autumn through to spring. I tend to be admitted to hospital once or twice a year.
Yes that sounds very familiar in that I also take each day as it comes. I take what I need to to mitigate the angina pain. I have not had luck with even high doses of long lasting nitrates or calcium channel blockers. I tried a short bit with Ranexa but the side effects were too much. Maybe if I took longer but it seems Ranexa either works or it does not. I have seen such mixed opinions and experiences with different people.
This is why I had to change the way I take gtn because nothing else works. I was apprehensive about taking it more but, for me, there is no alternative so I just have to do what works.
There is a difference between short acting and long acting nitrates.
You can develop a tolerance to long acting nitrates such as isosorbide mononitrate so it's important to stagger when you take isosorbide mononitrate tablets, to allow at least an 8 hour nitrate free period.
Sublingual GTN only stays in your blood stream for a short while so you don't develop a tolerance.
It's not unusual if you have vasospastic angina to need to use sublingual GTN more often.
The research and guidelines seem to suggest that Ranolazine is better suited for people living with microvascular angina.
I am sorry you are in the same boat as me with having refractory vasospastic angina.
It's no fun living with at times debilitating pain.
I also use a Transcutaneous electrical nerve stimulation TENS machine and oxygen to manage my severe crescending episodes of chestpain.
It's important to avoid taking beta blockers if you have vasospastic angina as beta blockers can make coronary vasospasms worse.
I’m new to a diagnoses of CAS and take isosorbide mononitrate daily. I was prescribed a GTN spray but the tablets seem to do their job.
I have been getting some pin point pain in the last few days but I’ve been tired and it’s not bad enough to warrant taking anything.
I can’t answer if it’s changed over time as I’m too new to it. I also have other complex cardiac conditions so I take a range of medications which possibly also impact what I feel and how it may progress.
Some people respond better to the meds it seems. I happen to be in the category where I don’t. I have been told by a research team here that some people have to take gtn many times through a day as the angina gets so bad. I was shocked to hear this as I thought I was excessive in my taking 1 daily or every other day for weeks or couple months. Seems to be phases of this where it can progress and then wane. I guess there is no normal.
I needed GTN about 3-4 times a day during the coldest days of winter last year (sub zero temps) but in contrast during summer (I experienced some good weeks when I didn't require GTN at all). I keep a bottle in my handbag and a spare in my bedside drawer. I can't leave the house without it because my attacks can get so bad that without the relief it gives me I would have to call an ambulance.
Hi Andy55, I have only been taking medication for this last year. I take Isosorbide Mononitrate and GTN. The GTN relieves my chest tightness/pain within minutes so I know it is doing something for me. I used GTN much less in the summer due to the warmer weather and improvement in my symptoms and did not require it daily. Due to the recent cold weather, the frequency of chest pain has increased and my need and usage of GTN has also increased. I currently use GTN about a couple of times a day. I suffer from both rest angina and exertional angina (during winter). My chest pain was really bad this morning due to the stormy weather. I checked my blood pressure and it was rocketing which it always seems to do when I get this much pain. When my chest pain gets this bad - I feel unwell and I'm completely debilitated and end up having to sit it out. My GTN usually works well but I felt it didn't have as much impact this morning. However, this afternoon, the wind died down and I started to feel much better, well enough to cook dinner, do laundry etc. Chest pain has returned this evening! I don't know if others experience the same, but sometimes your symptoms can alter hour by hour not just daily or weekly if that makes sense. My only explanation for this is that not just temperature change but changes in air pressure must be affecting me. I'm still trying to navigate my way through this complex condition.
I definitely can relate to the roller coaster of symptoms in a day. I can feel fantastic and then a couple hours later start to feel symptoms and have to take gtn. It does seem to be a bit worse in winter for sure.
One thing that’s helped me is to take gtn at first sign of angina. It prevents it from getting worse and has been a big help. Actually waiting seems to make it less effective sometimes.
Yes, this is my experience - up and down sometimes throughout the day. Taking the GTN before symptoms get too bad helps me. I needed my GTN during the night last night but felt much better this morning. Wind was really bad during the night and so for me wind is definitely a big trigger for worsened angina.
Hi my cardiologist suggest L Arginine but I could not get hold of the one he suggested as it was only sold in America. Can I ask where you get yours from please?I also have had to take my GTN spray a lot more often lately. It does not always work, it depends on whether it's microvascular or epicardial? It is so debilitating and like you have all said, things can change in seconds.
I am so thankful for this site and for all of you and your help, advice and input
Yeah I have seen the studies on this and various other things. It’s frustrating because there are always mixed results so one has to try and see how it goes for you.
I mentioned to my cardiologist that I was having angina more frequently lately and take nitro x1 every other day and sometimes multiple days in row since winter has come on. They want me to run in a get an EKG done like that’s going to show anything different. (It never does) It’s clear these folks just don’t understand this condition and in particular that I’m refractory and just don’t respond to all the usual meds and gtn is all that works. Just very frustrating and feels like they just want to cover their back side with EKG but otherwise have no clue. I do have an appointment with the COSIRA trial research team in Boston in January to discuss. These folks are really advanced and know both conditions. I have no definitive diagnosis of which conditions I have. (CVA or MVA) So maybe I can get the testing done to see and go from there. Just so frustrating sometimes.
1000-2000mg I used to be a frequent flyer in hospital especially at this time of year up until covid. After feeling constantly awful and put on one pill after another all with side effects I did some research and came up with a few things I take daily.
I had a heart attack last year ( stress related) and the cardiologist said where have you been we haven't seen you in a while. I said I had came off all meds and told him what I take now. His said well it must work for you if you haven't needed us till now.
I have MVA , Long QT Syndrome and Bradycardia. The Long QT and Bradycardia make most cardio medication difficult.
I have tried to take it before but not consistently and lower doses. It definitely helped me work out longer with more intense activity.
Do you take it once daily or break it up into multiple times daily? Did I understand you correctly that you stopped taking other meds? I have though so many times “whats the point of all the meds when they don’t seem to work”. It seems futile to take all these meds when they don’t change the symptoms really. (But for the gtn)
I fell into a similar pattern last year. After my stents and new meds, all was well so I thought; until November! Something triggered a reaction and I started to get stomach pains which went away only after using my GTN spray! This continued for several weeks and ended up seeing my GP. Instant referal to hospital and a short stay later got started on Bisoprolol. I stopped using the spray ever since. What I learnt here was that it is bad if I was using the spray daily.
I haven’t found any kind of pattern with it. Some days are good, other days more debilitating. I do a fair bit of hiking, and can really struggle on a bad day. It’s a very frustrating condition. I’m on Isorobide Mononitrate 40mg twice a day. GTN didn’t really work, I seemed to constantly have to use it. But never occurred to me that there was a rebound, but that would make sense. I also take Diltiziem as that stopped the overnight problems I was having. Isorobide side effects when I started them were horrendous, but I stuck with it, largely thanks to the information on here. Took two weeks for the nasty headaches to subside, but after that Isorobide was the game changer.
may I ask what diagnostic tests were used to determine you had vasospastic and Microvascular? I am currently in investigative process and just had to repeat angiogram done to determine why I still having chest pain after the initial angioplasty and stent. I have been placed on Bisoprolol but I feel it has worsened my condition. It is a very low dose. I feel worse now and have more pain than I did prior to starting this medication.. I am scheduled to see my cardiologist January 7 to discuss what the next steps will be. My understanding is that it’s very difficult to diagnose, and is usually done through the process of elimination, but I am early into this, so not sure what can be done. Very frustrating and scary .
I had a coronary angiogram, result was clear coronary arteries, but they caught a spasm on ECG and I had a Myocardial perfusion scan which also picked up abnormalities in blood flow to the heart muscle. I also had two separate visits to A&E where the troponin levels were high in blood tests, but not consistent with a heart attack as they didn’t raise again on the second blood test. The Echocardiogram was normal. What I’ve never had is the Coronary Angiogram where they inject something to see if you have a spasm. I don’t think it was deemed necessary based on the ECG and myocardial profusion scan, plus my bodies response to the meds. To be fair I think I’d have been scared as the chest pain I used to get was quite intense. At its worse I nearly threw up/blacked out. I’m not one to faint.
Thank you for your reply . My chest pain has never gotten to that point, but it is noticeable feels like a tightening, but that caused me a lot of anxiety.
I live in the US in New England…. They have stopped doing the chemical test via angiogram to validate which one. It is the same process of elimination and is why my diagnosis is either or which is frustrating. I have had to fight the entire way for many tests with lots of ER trips in hospital.
It took a while to get medication and in beginning was told I could not have gtn because no formal heart disease diagnosis. I have been on various doses of all the typical medications up to max limits. The only thing that works for me is the gtn so I stick with current regimen and gtn as needed.
I have talked with top research Cardiologist in Boston around these conditions and it truly is different for everyone. Some have horrendous angina pain many many times daily and others may be weekly or monthly. Some even many months without serious symptoms. Our bodies are all different and clearly this thing has phases of good and bad.
I stay active with weights, walking, yoga, and very light jog/walk routines that are very helpful. I also try to stick to a healthy diet.
thank you for your reply . I live in southern Ontario , Canada and as we don’t have private healthcare, I am dealing with public health, which has been very good. I have every confidence in my new cardiologist, however, I am very frustrated that my symptoms have worsened and rather than improved after having an angioplasty. I have but was told I didn’t really need to use it if I was on beta blocker … bisoprolol. I must say, though neither of these drugs alleviate the chest pain.
I remember being in thr hospital waiting for my heart cath the next day. My roommate was older guy and told me “don’t worry you will just get a stent and feel like a million bucks, I have had several”. So when they told me there were no blocks or disease I was temporarily happy. Then the angina came back a week later and I was so dismayed. I actually started to wish I had a block so that it could have been fixed and then no more symptoms.
That was long before I learned of the many people that had these procedures and yet still suffered with angina and many had this condition. You go through these sort of desperate periods when symptoms are rough and you start to think all kinds of ways to try and mitigate the angina. It really is trial and error to see what works for your body. I have learned there is no “formula” that works for all. I just do best I can and try not to let it drag me down to much and of course the gtn when I need it.
thank you for this information …. I didn’t even get temporary relief after the angioplasty. I had a 90% blockage in LAD and it was assumed this was the cause of the pain. Sadly , it appears it was not , and by sheer luck the blockage was found before disaster hit . Microvascular seems much more complex to diagnose and treat. I just wish I didn’t have this pain . It really ruins my day
I started having issues last year. Life was normal and I was only suffering infrequent symptoms when I first consulted my GP. I was healthy, not on any medication. My blood pressure was found to be very high and was immediately put on an urgent referral to the angina clinic. After attending the angina clinic, I awaited tests but as winter progressed symptoms increased to the point that I spent about a month really debilitated and housebound. I was certain I must have a narrowed or blocked artery because of how unwell I had become over a short period of time. I was optimistic if that was the case - I would be fixed in no time and back to enjoying my normal life. I was genuinely shocked when a CT scan showed clear arteries. I had never heard of Vasospastic/Microvascular Angina. I did not envisage that I would be still suffering this problem one year on. This forum has been a lifeline because I don't know anyone with this condition.
I am surprised that functional angiograms are not being offered.
There is a study taking place at Yale called ' Discover Inoca' which is performing functional angiograms.
In my experience some Cardiologists cover their lack of knowledge or skills by saying the test is unavailable or too risky.
I had my angiogram with acetylcholine in 2014, through the NHS.
The European Society of Cardiology's 2024 management of chronic coronary syndromes is now recommending that functional angiograms should be offered to confirm a diagnosis of microvascular or vasospastic angina for people with ongoing symptoms.
It’s seems to be my area that does not care to do them anymore but there are certainly other areas in US that are doing them. I could not get a real answer as to why here they don’t. I suspect our miserable insurance system is part of it. The insurance companies make every test, every procedure, and medication a fight.
I have had almost every other test and had to fight for each one and some like cardiac MRI , they insist I don’t need. Can be absolute maddening and tempting to get into ugly debates with them. However it does not solve anything for some specific cases you just can’t win.
You know in my younger years I did fair amount of travel, mostly Europe and Middle East. It is tempting to sometimes think “it must be better over there (wherever there is)”. What turned out to be closer to reality is that you simply trade off one set of issues for a new set that you did not realize was possible. So you discover how bad something can be in a totally new way that you had not considered. We can get a bit jaded over time I guess :). I know I sure have…
It took 18 months to finally get diagnosis. I was twice referred to gastric before they caught the problem on ECG. The rest was a waiting game. It’s the impact on my mental health that’s been the hardest to deal with.
I had an eight week wait for a CT scan. I'm very grateful for our health service and completely understand the pressures however, the worry of not knowing whether I had any narrowed or blocked arteries was terrible. A year on and on another waiting list.
Microvascular and vasospastic angina can be diagnosed by a functional angiogram using adenosine and guidewires to measure how the blood flows through the smaller vessels. Another chemical acetylcholine is then injected into the coronary arteries. Normal functioning coronary arteries should dilate in response to acetylcholine, if the artery constricts, accompanied by certain ECG changes and chest pain, then coronary vasospasms, vasospastic angina is confirmed.
There are several centres in Canada who are offering this type of testing.
The Canadian Women's Heart Health Alliance website has some useful information.
hello… Thank you for your response. I have read many of your posts and they are very helpful, and you have mentioned the test that you have available before when I inquire to my cardiologist about what further testing could be done. He told me that there was a type of CT that they could do , I what talking about is more of an angiogram type test. I will ask again on January 7 when I have my next appointment.
I have had nuclear CT’s done which revealed a blockage in my LAD but evidently did not show any other possible microvascular issues. Do you know what other tests you will have? Do they suspect microvascular with you?
Hello 1a2b3, Yes cardiologists suspect I have Vasospastic/Microvascular Angina. I believe I will need an angiogram - I'm assuming a provocative one. I'm not sure what other tests I will undergo yet but on waiting list for microvascular clinic to be assessed for next steps.
I had to use my gtn spray early hours of this morning. Ive not needed it for a while . A change in medication back in April has really helped, I take long acting isosorbide mononitrate 60mg I use a 10mg nitrate patch, 120mg Diltiazem twice a day and Trimetazidine.
I have never found the GTN spray to be particularly effective in treating my episodes of Vasospasm. I cannot tell whether the GTN has relieved the pain or if it has just subsided naturally. I was diagnosed with Vasospastic and Microvascular angina earlier this year after having the acetylcholine provocation test. I take isorbide mononitrate 120mg, Nicorandil 20 mg tpd and Ranolazine 750mg tpd together with ivabradine, ramipril and amlodipine for my bp. Mercifully my angina is now well controlled. I carry my GTN but very rarely use it
I could not tolerate the 120mg of isorbide myself and it still did not seem to make a difference. Did you find ranzoline itself to work or wa ms it the overall cocktail of things. One of the issues of when they give all the drugs like a shotgun approach, its difficult to know which made the difference. Wiiid be nice to know so that we did not have to be a human pharmacy but I get it, once you find anything that works, you stick to it.
It was a long story of trial and error, I started having angina at rest back in 2021. We spoke to GP who referred me to ‘Rapid Access Chest Clinic’. After several more episodes we called 111 and I went to A&E. They got me a bed on the cardiac ward and after a couple of days a cardiologist prescribed Amlodipine and Ranolazine 350mg. The Amlodipine reduced my bp but the Ranolazine had no effect on the unstable angina. I spoke to my GP again who suspected vasospasm and replaced the Ranolazine with isosorbide mononitrate 30mg. It helped initially but soon things were back the same . After several more trips to A&E they gave me a repeat angiogram which pronounced that my stents were all clear but noted a narrowing in the LAD between two stents. Cardiologist said my heart was fine and that chest pains and breathlessness could be chest related. To get this done quickly I saw a chest consultant privately who laughed and said nope it’s your heart and he recommended CT angiogram and referred me to another cardiologist who switched my bisoprolol to Ivabradine and increased isosorbide. Still no improvement so he referred me to a colleague to do another angiogram using a pressure wire to examine the flows through the narrowing. That angio had to be stopped when they forced a 2cm clot from my arm into the left artery causing massive pain. Fortunately the clot was extracted and I was discharged the next day traumatised but still with no diagnosis. Back in A &E and cardiology a couple of weeks later they tried adding Ranolazine and gave me a nuclear perfusion scan, which again said flows through the main arteries were fine. Cardio said it was refractory angina and prescribed Nicorandil which did help. He also suggested that cause may psychological and referred me for pain management. Over the next year or so the unstable angina episodes were reduced but we’re still occurring. GP twice sent me to A & E who did nothing. At next review we had done some research and requested a second opinion from consultant in a London hospital. Cardio (grudgingly) agreed and also increased Nicorandil dose to 30mg which again reduced the frequency and severity of the unstable angina episodes. After another six months I had a call from London consultant who suggested that we are just throwing drugs at the problem without identifying the cause. He proposed a further angio with investigation of flows in the heart and acetylcholine provocation. During that test I had the familiar chest pains which confirmed vasospastic angina. Consultant said I also had microvascular and that to have the two conditions was not unusual. He added Ranolazine 750mg to my medication and reduced Nicorandil to 20mg as I was starting to suffer from ulcers. 10 months on I feel a lot better, the unstable angina only occurs every 4 to 6 weeks and is quite mild. I now feel confident again to socialise knowing that I will not suddenly have an episode.
It’s been a long haul, and sadly one that is probably familiar to other contributors to this forum.
None of the drugs in isolation were a game changer, it’s the combination of Isosorbide, Nicorandil and Ranolazine which has made the difference. Not to mention the expert knowledge and care of a cardiologist who took my condition seriously and did not imply that I was imagining it all!
"the expert knowledge and care of a cardiologist who took my condition seriously and did not imply that I was imagining it all!"
I echo your comment. I had my angiogram with acetylcholine in 2014, I will never forget the relief in being told my pain was due to myocardial ischaemia and not in my head!
I was also reviewed by a world expert Prof at St Thomas's who confirmed my diagnosis of vasospastic angina. His opinion is difficult for the unbelieving Cardiologists at my local hospital to ignore which they tried to do despite my angiogram results.
It good to hear that your symptoms are well controlled.
Hello Gibson01, I require the provocation test. I am hoping once I have more advanced testing I might be given meds tailored to allow better control over symptoms. It's great that you have found a combination which give control over your angina.
that is exactly the issue that I have had. Prior to being diagnosed and being prescribed GTN , the pain would come on about five minutes into a walk and then subside on its own about 5 to 10 minutes later. When I was prescribed the GTN spray, it was basically the same time frame so I never really was able to determine if it was fixing itself or the GTN was working , which was why I was prescribed bisoprolol…. Which is nothing and possibly made it worse.
Prior to me prescribed GTN my episodes would come on - intensify then settle down on their own with rest. I suddenly became more unwell one week last winter when we had a severe frost. I suffered an angina attack while out shopping and was too afraid to take my GTN. Two days later I took another bad attack. I called an ambulance. At that point I had been walking around with my GTN for a couple of months but had never used it. I took it for the first time while awaiting the paramedics. It started relieving some of my chest discomfort within minutes. My blood pressure was over 200. I thought I was having a heart attack. I spent the day in hospital while they monitored me and they released me at night once my blood pressure had returned to normal. So for the following days, I started taking my GTN once an attack came on. It usually relieves the chest pressure within minutes. Although I have had some bad episodes when the GTN has not worked as well, most of the time it helps. I have episodes now which simply won't subside with just rest and I can't do without it. I'm not sure why this is the case but I hope I'll get some answers when I'm seen at the clinic. I can see why it can be confusing if you don't know whether GTN has helped or not. All I can say with certainty that GTN reverses whatever is happening in my arteries. It might not give me a long period of relief at times but definitely works for me.
that’s great to hear that you get relief with the GTN spray, but I will be giving it a try again the next time I’m out and having an episode. I hope you get answers soon.
I initially didn’t find my GTN spray to be very effective in treating my episodes of MVA and heart spasms, and, like Gibson01, I couldn’t be sure whether it was the GTN that relieved my pain or whether it just subsided because I had learned to immediately rest once I felt that horrible feeling and onset of chest and jaw pain.
However, my consultant has been amazing in helping to find a combination of meds that have, thankfully and magnificently, helped to control my angina most days although I occasionally still have some really bad, debilitating days. Daily I take 2x 40mg isorbide mononitrate (with which I initially struggled hugely with severe headaches) and 500mg Ranolazine, later moved to 2 x 750mg, along with 1x lamprosol and 1x amlodipine.
I always carry my GTN and use it whenever I’m feeling the onset of one or more of my ‘attacks’ coming on to ensure I use every resource I am lucky to have.
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