I would like to know how long it it usual for a spasm to last.
Before Christmas when I ended in AE mine seemed to last a couple of weeks. Today it started in my jaw , then neck and finally across my chest. The name suggests a spasm and all over quickly but this has lasted all day .
Do others have similar symptoms as above , plus still unable to walk up hills even gentle inclines and generally feeling very unwell.
I am taking Tildiem and Ranolazine, one side effect of both tablets is constipation which is another problem I could do without.
Is anyone else on these two medications and how are you getting on with them. I am wondering if there is another combination that would work better for me. Not much chance of having a consultation anytime soon !
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Mitzi-
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I’ve been having cluster spasms which can last hours and hours whilst varying in severity. Three puffs of GTN doesn’t seem to shift it either.
Do you have a GTN spray? Maybe you could try this next time if you haven’t already?
Ideally, if the spasms or angina do not settle with two puffs of GTN, it is usually a trip to A&E. However, the other frustrating thing which I have found with A&E is that they don’t know how to treat my spasms when I’m there and can only offer me pain relief as there never seems to be a knowledgeable cardiologist available. However, my local hospital is small.
I am on Tildiem, with the view of having my dose increased. Due to side effects, I’ll be waiting to increase my dose. In terms of whether it has been effective for me so far, the answer is no however, I am due to have other medications added slowly to build up a cocktail of meds that hopefully work for me.
I didn’t get on with Ranolazine. I found that it made my heart thump/pound whilst I was on it.
As you still have the pain Mitzi, and you have had it most of the day, I would suggest calling 111 or going to A&E just to be safe.
Thank you for reply. Yes have a spray and does not make much difference. Our hospital although not small still has same problem and does not know what to do for me and no available specialist. Think I will leave it until morning and hopefully things might have improved. Best wishes
Hi, I had my MIBI scan done. In some ways I wish I'd never bothered going through with it, terrible thing to say I know but that's how I feel. I was told it will probably show disease if it is in a concentrated area. If it is scattered around the heart probably not and as I have already been told the tiny vessels cannot be seen with this scan. Plus I would have thought it would have been better to stop nitrate medication prior to scan, but that's only what I think. So I have no real answers. Cardiologist has continued prescribing Trimetazidine. I am getting worse and currently the only thing that helps relieve the pain is the GTN spray. I am aware of something that has been showing up on the ECG which I am trying to get more info about plus sort out a possible issue with pacemaker. I have an appointment with GP in a few days to discuss. If I don't get any joy with cardiology ( I am waiting for a response from them) then I am going to ask for a referral for a second opinion.
Sorry to hear you’re still having the same issues.
I don’t remember taking my medication before my MIBI scan. I also had my GTN spray with me to take into the scan, but they said I won’t need it and I was required to leave it outside.
My MIBI scan that was taken last year in Feb 2023 did not show any ischaemia. I paid privately for this and I don’t feel like it helped me specifically in obtaining answers. My cardiologist at the time was discussing the results of my MIBI scan from the point of view that I cannot have ischaemia because I do not have a blocked artery. Of course we know that this is incorrect so he was not able to provide much information on this and I was only just starting to understand INOCA conditions.
I have a new treatment plan in place after going private again to see an INOCA specialist. I also feel you would benefit from this. They can suggest new medications to try and any relevant testing that you may need to confirm diagnosis or investigate your current symptoms further.
The website below has a number of specialists and there are some that you can be referred to via your GP on the NHS. It’s also a good resource generally, to learn more about INOCA/ANOCA conditions which you might want to bring to the attention of your cardiologist.
Hi Tos, Thanks for that. I have the name of a specialist in mind from the INOCA website. I have a letter drawn up ready for the Cardiologist with these websites on there. I am going to get the GP to forward it on to him, including pages from a symptom diary that I am keeping, he can do a covering letter. I can understand why my previous cardiologist was so reluctant to send me for a scan. Obviously more work to be done. Hope you are going on ok?
It’s good to know you have a plan in place. It is not uncommon to need medication adjustments with these conditions every so often and perhaps, you do need yours tweaking or changing around a little bit as your body is no longer responding as effectively as it did to your previous treatments. Sometimes we build a tolerance.
I am still early on in my new treatment plan. I will be increasing my dose of Tildiem, though the side effects haven’t been very pleasant, and having GTN patches, Nicorandil, Isosorbide Mononitrate, and a possible statin added at some point. I can’t say I’m looking forward to adding the nitrates as I already have side effects with the GTN, plus having a bridge, but I am keeping an open mind.
I hope your cardiology department gets back to you soon. If not, I do hope obtaining the second opinion is smooth and easy for you and you get some relief.
The chest pain of microvascular and vasospastic angina are notoriously painful and can be prolonged.
I will experience a dull ache or implant of pain over my heart after a really severe coronary vasospasm.
Before I went into hospital recently my vasospasms would come in clusters throughout the day and night lasting upto an hour in length.
I also had exertional chest pain.
I am never sent home from A&E , I am admitted and treated with IV GTN.
We all seem to have our own version of either microvascular or vasospastic angina and respond differently to the medication differently.
What works for one person may not work for another.
Saying that microvascular angina tends to lead to symptoms on effort while vasospastic angina's classical hallmark is chest pain at rest especially during the night.
I personally found Ranolazine didn’t help me, I had alot of palpitations and ectopic beats.
There is some evidence that Ranolazine is more effective for people living with microvascular dysfunction.
I am now on 360mgs of Tildiem retard twice a day along with high doses of Isosorbide mononitrate nitrate, GTN patches, nicorandil, clopidogrel and rosuvastatin.
Have you been able to contact a Cardiologist to review your medication as there are other medications that can be offered?
I suggest you discuss your ongoing symptoms with your GP and ask to be seen by a Cardiologist.
If you do need to go back to A&E make sure you are reviewed by a member of the Cardiology team.
The problem we face is that there is still a lack of awareness of microvascular and vasospastic angina amongst many healthcare professionals.
Hi Milkfairy, With such high doses of mononitrate etc, how do you get on with your blood pressure? does it drop very low? The other question I want to ask you is, when you have spasms either during or immediately afterwards do you experience any palpitations at all?
When I am in hospital my blood pressure is monitored every 2 hours night and day.
I am also on continuous cardiac monitoring
My blood pressure rarely drops and to my Cardiologist's surprise I don't have a headache.
I am not aware of any arrthymias.
Only Candesartin has crashed my BP.
We all respond to medication so differently.
I hope you are able to find a Cardiologist to help you futher.
There are by the way many Cardiologists around who know about microvascular and vasospastic angina who are not listed on any websites. I work with several leading researchers and so I am in contact with quite a few.
There is also this website which is another good resource of information.
Wow! you are lucky with your BP. I was diagnosed with high blood pressure nearly 40 years ago. I have been on medication since then to control it. Taking Monomil and adding a Nitrate patch has dropped BP. But when I have been having episodes of angina and my BP is checked in hospital my systolic pressure has been over 200 with the diastolic pressure 120 or so. I am now back on a calcium channel blocker as well now. Anyway thanks for that.
No, I've never seen a specialist. My BP used to climb (not quite that bad though) when I had episodes of SVT, I mentioned it to a cardiologist but he wasn't concerned about it. I do have a lot going on and I think this is going to need a lot of sorting out.
In a previous post you mentioned the Bristol Heart Institute. Do you know of any specific names of cardiologists who are knowledgeable in MVA. If you do, I wondered if you could send me a private message with their names please.
I have suspected Microvascular / Vasospastic Angina
Just read your post from last night. I hope you are feeling better and your chest spasm is settling down.
In answer to your question I do have the symptoms you describe. I find even small inclines difficult at the moment.
Sometimes the spasm doesn't last long and is quickly relieved by my GTN spray however other days the chest discomfort / pain seems to last all day long.
On a bad day I find I require GTN about three times per day. On a good day only once.
I don't take the medications you are on.
I take Isosorbide Mononitrate and use my GTN during attacks. I believe other medication may be tried/added for me as time goes on.
I sometimes feel my spasms come on suddenly without warning. My spasm triggers are cold temperature, exertion and emotion.
It's still very cold outside so that's not helping me at the moment. One or two contributors to this forum say their condition improves spring/summer which is encouraging.
I don't know what your experience is but sometimes the spasm feels like a intense squeezing feeling and I can become dizzy, feel unwell. I have to sit down take GTN. This usually helps reverse the episode within a few minutes.
I can't predict when the pain will come.
It doesn't allow me to do any heavy duty housework like hoovering or lifting anything heavy. Can't even do the weekly food shop just now.
Also are there always ST elevational or depressional changes when spasms captured on ecg. And do any sufferers use a kardia or Apple Watch that can pick these up?
In the nearly 12 years of living with vasospastic angina I have had ST elevations, depressions and T wave inversions.
During my admissions I will have dynamic ECG changes. I am given copies of my ECGs. Before I leave hospital I am shown my ECGs and how they change during my admissions.
I now know how to recognise the dynamic changes to my ECGs and what is normal for me.
Catching a vasospasm in action can be like trying to catch a wil in the wisp.
Mine have been caught when I have consecutive ECGs done during an episode of chest pain.
Often a vasospasm will not last long enough to cause ECG changes.
A Kardia or Apple watch can be useful to detect heart rhythm problems but a 12 lead ECG is needed to identify ECG changes due to a lack of blood supply to the heart that occur during a coronary vasospasm.
During my angiogram with acetylcholine, I experienced my usual chest pain, I was given morphine, I had ST elevations and depressions.
My severe episodes of coronary vasospasms feel like being in labour to me. They come in increasingly, prolonged crescending clusters usually at rest, especially in the night.
It feels as though someone is wringing my heart in their hands, as though they are wringing water out of a wet cloth.
My chest pain starts to the left of my chest bone, radiates in a line of pain through to my back. It feels like a cheese wire cutting through my upper chest wall.
I have pain in my stomach, lower left ribs, kidney, left face, and arm.
I feel I can't breathe in, all the air has been squeezed out of my lungs.
My bra feels way too tight.
I also have neurological symptoms, I am very sensitive to light and noise.
When I am at home I use a Transcutaneous electrical nerve stimulation TENS machine to help ease my pain.
In hospital I am given IV morphine as well as IV GTN.
The problem we face as patients is that there is still little understanding of microvascular and vasospastic angina amongst healthcare professionals. Nor is the management of our chronic and acute episodes of pain understood.
Cardiologists are not pain specialists.
My Cardiologist uploaded this recently published paper onto my care plan and electronic medical records. The staff were reading it during my recent admission.
For me, it’s a squeezing pain. I can feel my artery constricting and releasing. This can happen a number of times during the day if I’m having a particularly bad day, and the pain radiates into my upper back, shoulder blades, middle or right hand side of chest and my arms.
Lately, the pain is going into my throat and ears. I feel like someone is taking a screwdriver to my ears and my ear drums are going to burst. It’s an odd location, but it is very painful. GTN may or may not relieve it for me.
Severe spasms for me are also associated with the need for me to open my bowels as they cause abdominal pain. It is a symptom that is being monitored.
On a stable day, I would rate the pain 4-6. On a bad day, it’s more than a 10.
Mine do come on intermittently throughout the day in clusters.
I have an Apple Watch however, it is difficult to catch a spasm if the ECG is not being taken at the time. From my knowledge, I was only told once about an abnormal ECG which was after my HA in Jan 2022. I have had abnormal ECGs at A&E but they have always passed them off as normal and have never informed me of them. It is only when I look at the ECG, I see the note that it is abnormal.
I have suspected vasospasm and have only been living with this problem this winter.
For me the spasm feels like an intense squeeze in my chest which can often come on suddenly.
I experience a feeling of ill ease and can feel unwell very quickly and need to stop what I'm doing, sit down and take GTN spray to relieve the episode.
GTN reverses episode but sometimes left with an aching chest after attack.
Sometimes these spasms can be accompanied with shortness of breath and a feeling your brain is not getting enough oxygen.
On a pain level score 1-10, about 8.
They can come in clusters e.g., couple during evening - 8 p.m. then midnight
I experience two or three separate attacks every day.
I also can experience all day pain
My spasms occur mornings and evenings but mainly in the evening.
So I have two types of pain although one more prevalent than the other. The first is a burst of say 5- 10 zaps of pain across the chest that last no more than a second and in total wont last say 5-10 mins. Pain level 1-2 but noticeable. No other symptoms. This type have dropped off just recently. The other is behind sternum of left hand sided what I can only describe as 'pulses' of pain/discomfort' or spasms of pain/discomfort. Pain level same ie low. No other symptoms. In overall duration these individual or groups of spasms can last hours and hours and once nearly 24 hrs. The pain doesnt radiate and each overall espisode has the pain/discomfort in the same area. It isnt classic angina or unstable angina and Cardiologist doesnt think vasospastic spasm. However I dont really think its oespohogal or if it is it isnt classic! I have nothing like the pain that Milk Fairy describes. At hospital and Drs the ecgs ok but I take the point about absolutely capturing blood supply at the exact moment. Interestingly I am being traeted as if it was oespohogal but its seemingly same managment for vasospastic spasms anyway ie nifidipine and gtn. I also had open heart surgery last year for a thoraic aortic aneurysm found while investiagting this pain. So something good has come out of the invsetiagtions for the pain!
Nitrates and calcium channel blockers act on all the smooth muscle in the body.
Smooth muscle makes up the organs in the body that are tubes or hollow. This includes the blood vessels, oesophagus, bile and pancreatic ducts, ureters, bladder and uterus.
Have you been able to make contact with any other patients who have also had surgery to repair their thoracic aortic aneurysms?
I am also suspected of having oesophageal spasms. Sometimes it’s difficult to differentiate between a vasospasm and an oesophageal spasm, as both feel like you’re having a heart attack when it’s really bad.
Have you had any tests to rule in/out the oesophageal spasms? A manometry is one test that can look for this.
GTN can help in reducing oesophageal spasms and is used as one line of treatment for them. But again, if the GTN helps, it becomes difficult to understand whether it was from a vasospasm or from the oesophagus. This is why testing is important.
Maybe you can discuss further treating for the suspected oesophageal spasms with your GP?
Yes, I have been house bound for the most part because of how cold it has been. I have not been able to open my windows very much during the cold weather this year either as it triggers my angina.
I am also sensitive to environmental factors like pollution and smoke as well. Air fresheners, perfume, and the smell from cleaning products (eg. Bleach) can also trigger my angina.
I have a feeling the winters are going to get colder and colder which isn’t ideal for us with these conditions.
I have learned to live with vasospastic angina over the years. I have been admitted to hospital nearly 20 times over the years, 3 times in the last year.
Cold, emotional, mental and physical stress are my triggers.
I go out everyday whatever the weather to walk my dog for an hour, getting out in nature is an important coping strategy for me.
I have learned to walk a tight rope of managing my triggers with a safety net of resilience and strategies to catch me.
This recent study is about what patients living with microvascular and vasospastic feel. You'll hear echoes of your experience in the quotes from the participants.
Hello, when I'm at home and I have pain sometimes it's the diastolic pressure that increases. I too struggle with hills, I have to walk slowly now even on the flat. Going for a brisk walk is out of the question now. Sometimes the pain is with me on/off all day. Other times I'm OK until late at night then it will start. My pain usually starts in waves, once it becomes constant it can be unbearable and I can feel unwell with it. GTN spray is relieving it, so far! I too can have pain into my jaw sometimes through to the shoulder blades.
My pain comes in waves also. Waves of crushing or squeezing pain . Then there's the dull ache or preassure that lingers . The tiredness that proceeds it. I find it very depressing . It's impossible to feel happy when you have pain in the heart.
Hi Poppy, my waves of pain can go on for a few hours then it becomes constant. It feels like an intense pressure in my chest sometimes a very tight squeezing pain. I can often feel unwell with it and I have to lie down on the bed. Like you I get very tired, it's not unusual for me to fall asleep!
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