Unstable angina? Syndrome X? - British Heart Fou...

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Unstable angina? Syndrome X?

Krazykate profile image
26 Replies

Hello everyone

Im 47 and up until 3 months ago I was fit and well. I woke one morning with unilateral face numbness and after MRI was thought to be a TIA ( small stroke) Round about this time I started to get significant central chest pain on minimal exertion and after 2 or 3 A&E/hospital admissions I got several investigations. On hindsight I have been getting spells of chest pain including a visit to A & E for 3 years but it was put down to anxiety due to a messy divorce. The long and short of it is, apart from a slight ST depression on an ECG, everything cardiac was normal. I have been found to have high blood pressure and a cholesterol of 5.8. I have no other contributing factors such as smoking, family history, etc. My diagnosis for now has been a bit vague. I apparently have microvascular angina/syndrome X and have been left with unstable angina. Quote, “there is nothing they can do”. I am on a truck load of medication, which is scary in itself and I experience 2 or 3 episodes of chest pain a day on slight exertion. I have consumed several bottles of GTN! I cant drive, cant walk long distances or up hills or anything that requires effort. I cant work and am demented by my understandably worried family trying to wrap me in cotton wool. To be honest Im terrified and yes, I too have enotions all over the place. It would be fantastic if I found someone with a similiar history, im feeling a bit dazed. Thank you for listening to my story.

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Krazykate
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26 Replies

Hi I am really sorry I can't help with any of your symptoms, I have a completely different thing, but I am sure there are people here that can reassure you and the nurses might be able help as well, I understand how anxious you and your will be it's such a shock, take care and we are all here to help if we can or just offer support, chaz x

Krazykate profile image
Krazykate in reply to

Many thanks Chaz. Im so relieved to find a forum like this. Theres nothing like online friends and people with similar experiences to keep you informed and keep you going. The support is very welcome, thank you.

skid112 profile image
skid112Heart Star

Hi Kate, sorry I can't help either but there are a few links on the BHF website you might want to look at.

bhf.org.uk/heart-health/con...

bhf.org.uk/research/what-we...

bhf.org.uk/heart-matters-ma...

I hope that helps

Krazykate profile image
Krazykate in reply toskid112

Thank for your help, its much appreciated. Will go and have a look at those links shortly.

laura_dropstitch profile image
laura_dropstitchHeart Star

Like the other commenters, I have an entirely different heart condition but can relate to the anxiety and frustration you are feeling. Do you have someone not related to you that you could talk to? My hospital had a psychologist who specialised in working with heart patients and I found it so helpful to talk to him, especially in the early days when I was too scared and upset to be able to articulate properly or spare loved ones' feelings.

Sending best wishes to you x

Krazykate profile image
Krazykate in reply tolaura_dropstitch

Thank you for your reply Laura, Im kind of getting the impression that this forum might be ‘my someone to talk to’. Im so delighted that people have taken time to supprt me. Thank you.

Kristin1812 profile image
Kristin1812Heart Star

Hi Kate. I know what this is like. Very unsettling, and v hard to hear there is so little they can do. I have unstable angina too, and I’ve been there. I’ve had lots of stents, but now left with microvascular disease, in vessels too small to stent.

The unsettling thing is, like yours, we both get angina when doing very little. I used to wake up when asleep, as I’d turned over in bed and it started. After eating supper it started ( I now have main meal at lunch, just a snack at night). But the stable angina (when I exert) is almost entirely controlled with the meds. It’s taken ages, but it’s much better.

The one thing that has been brilliant is exercise. I go three times a week and try to walk on other days. All fine if I start slowly and build up to using quite a lot of energy. Ive lost weight and am a much better shape! Most interestingly the Consultant, on checking a recent MRI with an old MRI, asked what I’d been doing. He said my good heart muscle (I’ve also had three small HAs) was stronger and more efficient. I was elated. I really could do something to help those poor little microvessels!

It seems as if theyve had to get the HR and BP, as low as they could (to reduce the angina), but not so low that I fall over. HR is now around 58-60, and BP around 100/65.

It’s really been trial and error.

A Fitbit has been very useful to bring to GP or Consultant, when they’re juggling things.

I’ve gone on a bit, but I found others real experience so helpful, here.

Do feel positive. Things can improve. And please let us know how you get on.

Krazykate profile image
Krazykate in reply toKristin1812

Hi Kristin, thanks for your encouraging words. Your comments about exercise are very interesting. My natural reaction is to do something to improve things but at this stage Im being told to rest. To be honest I cant even walk down the street without getting chest pain so I think I have a long way to go! I do now have a Fitbit and my plan is to go out and just increase my steps gradually. Like you I have got my HR and BP down but Im hating being on so many medicines. Waiting for another cardio appt so will see what that brings,

Many thanks again, ill keep in touch.

laura_dropstitch profile image
laura_dropstitchHeart Star in reply toKrazykate

We have a Fitbit group if you'd like to join and be Fitbit friends with other wonky-hearted people. You'd be very welcome. Details in this post here - healthunlocked.com/#bhf/pos...

Krazykate profile image
Krazykate in reply tolaura_dropstitch

Thats a great idea and something I can see me hopefully doing in the future Laura, Im all for team work with good reason.

Just now, psychologically I think it would work against me. I can hardly do any steps at all (I used to do 10,000 a day) and this is already causing me disappointment and stress. I am however going to endevour to do my own wee programme in the meantime, trying to increase my steps by small amounts every few days.

Thank you for making me so welcome.

laura_dropstitch profile image
laura_dropstitchHeart Star in reply toKrazykate

I totally understand that, feel free to join up any time you like. There's a massive range of step counts within the group, which was one of the main reasons for setting it up - hopefully those of us in the group understand that somebody else's achievements could be huge despite their step count not looking that impressive.

Good luck with increasing your steps again. You should share your achievements on here so we can cheer you on that way :)

Kristin1812 profile image
Kristin1812Heart Star in reply toKrazykate

There is so much to take on, isn’t there? It’s a hard hand to be dealt. Sorry if I was too ambitious, too early. Rest first, as directed, yes! then do what you have to. You’ll work it out!

laura_dropstitch profile image
laura_dropstitchHeart Star in reply toKristin1812

That's so good to hear. I fantasise about getting news like that from my cardiologist, mostly while I'm bored on the exercise bike :)

Plum53 profile image
Plum53

Hi I am sorry you are going through this and feel so worried . That I can relate to but I have a different type of angina. I have looked up Info on the internet about your type and found on the BHR web site Jennifer Waller's story about how she got her life back after being diagnosed with the same condition as yours. Have a look hopefully this will help you in some way xx

Krazykate profile image
Krazykate in reply toPlum53

Thank you, ive just read it and it has helped enormously. For the first time I feel a glimmer of hope. The loss of my ability to do things has been by far the most difficult thing to accept.

Many thanks for taking the time to comment.

Plum53 profile image
Plum53 in reply toKrazykate

Glad I could help xx

Rosiejim1 profile image
Rosiejim1

Kate , hi!

I too have microvascular angina.

I have tried all the meds there are , with awful side effects and minimal relief. Gtn does nothing as it's trying to open up tiny little capillaries that are blocked. All it does is give the headache!

I have had stellate ganglion blocks every 3 months via the pain clinic. First one worked magically.....now I'm unsure if they help.

Get back in touch if u want to chat on here about it

Laura

Leannevgil profile image
Leannevgil

Hi everyone! I too have been diagnosed with Microvascular Angina after initial tests pointing to unstable angina or prinzmetals. I don’t remember a day without chest tightness or pains since January 9th when it all kicked off. I’ve just started Ranolazine (an anti-anginal) as well as a nitrate, bisoprolol and aspirin. I’m having an angiogram on Monday but they’re obviously not expecting to find anything. I’m just writing to see how you are getting on now Krazykate? Hope things have improved for you? It’s a really rubbish time especially when you go from active to planning your day around not doing too much! 😥❤️

ClaireATP profile image
ClaireATP

Hello Kate

Your story sounds much like my own. 3 weeks ago I was taking my 17 yo son to look round a Uni, while there I had tingling in my hands, arms and one side of my face. When we got home I took a couple of aspirin as I too thought it was perhaps a mini stroke. Next morning I got up felt fine and went into the garden to do some weeding. My heart attack started then. In hospital I was given morphine which relieved the symptoms immediately. ECG results looked fine. Next day I had an angiogram but didn't need a stent. Sent home with lots of meds.

Since then I have had random chest pain and pain in my arms, when it gets bad I use my GTN but often just stopping whatever I'm doing helps. Fast walking or becoming emotional seems to set it off the most.

I have an MRI booked for next week and hoping to have more answers. At this stage it feels very lonely. I'm 55, don't smoke, rarely drink, within my BMI.

Please let me know how you're getting on now, all the best,

Claire

Gillyg profile image
Gillyg

Hi I have just written my story about microvascular angina, your case is similar to me. I find the not being taken serious hard, I have pain on walking up small inclines and stairs and just generally walking for too long without rest. I don’t know if it is serious or not. I have a strong family history of heart diseases but I have never smoked keep my weight down. It’s frustrating I have several autoimmune illnesses and to be honest sometimes I don’t know what is what. I try very hard to live a normal life but with helping my husband more while he is not well I find it’s causing me to feel more pain. I feel I need to understand more about it. Do you see a consultant. I wish you well and wish I could offer you more advice. Take care. 👍

Judyjinx profile image
Judyjinx

Hi im new to all this too. Reading your post is so like my experience!

Im currently waiting to see what happens next. My gp is great but cardioligist just said clear arteries from angiogram ! Gtn spray and other pills . If there wasnt anything wrong with heart why have them?

Im see my gp today this is what im going to say.

Theres a good site re micro and artery spasm think its american heart sisters . Lots info on this disease. Uk drs not caught up to american as yet hence out date syndrome x . Its micro vascular disease . Coronary artery spasm.

Lets hope things get better for us x

Milkfairy profile image
MilkfairyHeart Star in reply toJudyjinx

Hi Judy

There is a growing awareness of MVA. The BHF now uses the term MVA and updated their information leaflet about MVA last September.

An expert patient by experience and a leading BHF researcher advised on the contents of this leaflet.

BHF funded researchers are actively researching into MVA and Microvascular dysfunction.

You may find these links helpful.

Please print out the leaflets and start to spread the word and help update and educate the Cardiologists, Cardiac nurses and GPS involved in your care.

bhf.org.uk/publications/hea...

bhf.org.uk/heart-matters-ma...

bhf.org.uk/heart-matters-ma...

bhf.org.uk/research-project...

There is good care here in some areas of the UK sadly not enough. This is a complex under recognised and poorly understood and treated type of angina.

I am fortunate enough to have a Cardiologist who does understand MVA and Coronary artery spasms and actively involved in research.

bee2 profile image
bee2

Hi Krazykate, hope you are maybe feeling a little better since you started this thread? Five years ago I was also taken to hospital with severe chest pain and diagnosed with acquired Long QT syndrome triggered by migraine meds. I had raised troponin levels and told it was a heart attack but then they changed it to Vasospasms. All tests came back clear although a few ecgs showed inverted T waves. Not sure what this means. I have had another two heart attacks since then brought on by stress. I got to the stage that I felt as if because I didn't need open heart surgery, stents etc Cardiologists didn't want to waste their time. When out depending on the weather I can walk for miles. My problems happen when I stop, I then get dizzy, breathless, chest pain and my leg feels as if its made of sponge. I now have a new GP though who has been amazing and what I thought were different conditions Migraine, Asthma Heart issues etc my GP thinks they are all linked to Cardiac Vasospasms. I am also low tolerance to medications and the Long QT diagnosis also limits what I can take. At present all I am taking are GTN and 2mg of Candersarten as higher doses lowered my BP too much. I also have bradycardia and heart rate at times is 36bpm which makes me exhausted. Do you ever get pain in your left arm without the chest pain?

Smileyian profile image
Smileyian

Hi I am new on here. A 76 year old British man retired in Singapore. I am so very pleased to have found this heart forum as there are varios cardiac topics from many Members and patients which will not only help me but allow me to share a my own diagnosis and comment on any similarities. I am just signing in and will be more explicit using my computer as very slow on hand phone. Anyone, please ack receipt to allow me to know I have set this up correctly. Tks smileyian

Sunnie2day profile image
Sunnie2day in reply toSmileyian

Hiya, Ian, and welcome to the forum!

I think once you get to your computer the best thing for you to do would be to start an entirely new discussion - this one is three years old:)

Go to either of the home pages (the one for Health Unlocked is at the very top of your screen, the one for just the BHF group is in the red band just below the very top nav bar) and you'll see 'What's your question?' on the HU home page, and a blue box 'Write' on the BHF home page - using either box will guide you through posting your introduction post (and any other discussions you want to start) on an entirely new discussion so it gets proper exposure to the current active members.

And again, welcome to the forum!

Smileyian profile image
Smileyian in reply toSunnie2day

Excellent advice. I will look fwd to starting a new discussion tomorrow. I am a former educator and minor diplomat but only retired a few years back. I appreciate appreciate your response.

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