Not great tifsy

[Fluffybee]

I’ve had more pain and that awful heaviness on and off all day, off to bed with an achy chest, I’ve used my GTN spray and hope it gets me through the night 😊

[Hondacbr]

I can empathise, my mva seems to get worse when Iie down.

Didn't get a wink of sleep last night cos of the heart pain.

Good thing is being awake I found this forum with other people living with mva so I don't feel so alone/misunderstood.

[Fluffybee in reply to Hondacbr]

Hi hondacbr

I had sleep on and off, but still ache this morning, better get the heat thing out.

How long have you had MVA ?

[Hondacbr in reply to Fluffybee]

I found out last Weekend, I'm still trying to get my head round this problem.

I don't show it but I'm really upset about the whole thing it's so damn frustrating.

[Fluffybee in reply to Hondacbr]

It certainly is, I haven’t been diagnosed that long but still trying to cope with how to manage it. It’s hard isn’t it, especially as it’s not that well recognised and not much you can read up on.

Milkfairy, I hope you don’t mind if you read this Milkfairy but you’re very informative and have a lot of knowledge on the subject and has it herself.

Where do you get the most pain ?

[Fluffybee in reply to Hondacbr]

Just looked through some posts and saw yours, just wondered how you are, if you feel any better ?

[Fluffybee in reply to Hondacbr]

That’s to Hondacbr ...

[Kristin1812 Heart Star]

Hi Fluffybee....just a supportive message. So sorry you are having such problems. Middle of the night is the worst time, isn’t it?

I am sure you have pursued all lines of medical enquiry, as far as poss?

Does anything at all work for you, when it’s like this?

Quite by accident I discovered recently that a heat pad calmed my chest pain down (well, it feels more like chest exhaustion, really) .

I hope you find some relief.

[Fluffybee in reply to Kristin1812]

Hi Kristin1812

It’s really lovely Shen there’s so much support on here, I’ve done as much as I can so far, I’ve bought myself a heat pad which is comforting and does seem to take the edge off.

Definitely the worst time is being in pain during the night, such a lonely time and more frightening some how.

Thank you for your support

[Sunshinebrew]

I'm sorry your bad at the moment I don't think the cold weather helps at all. I'm sure some heat will help I sometimes use a hot water bottle. After a bad night have a relaxing day. I think the weather is due to improve so hopefully it'll get warmer next week. Take care.

[Milkfairy Heart Star]

I go to bed with 2 hot water bottles every night summer and winter.

I make a nest of pillows either side of me to keep them in place. I get most of my angina pain in my upper back, left side and chest.

I have been prescribed oxygen by my Cardiologist to use at night. This helps with my pain and I can sleep more deeply.

Vasospastic and microvascular angina are challenging to treat as well as live with!

The lack of sleep due to being woken by pain at night is exhausting.

Has your Cardiologist considered an alternative Calcium channel blocker such as slow release Diltiaziem or extended release isosorbide mononitrate?

These medications along with nicorandil can be helpful to treat vasospastic angina.

Perhaps this is something you could discuss with your Cardiologist?

[Fluffybee in reply to Milkfairy]

He changed viazem or something like that to amlodipine which he said is more effective than the other, it’s definitely improved since then but still having good days and some really difficult days and nights especially if I’ve done more.

I should see my cardiologist around August but who knows, everything is a bit upside down at hospital at the moment.😊

[Milkfairy Heart Star in reply to Fluffybee]

It's good you have an appointment coming up.

I had a telephone consultation with my Cardiologist last week.

Perhaps in the meantime keep a diary of your symptoms.

I take some of my medication at night rather than the morning and this can help with the night time angina. Again discuss this with your Cardiologist as a possible strategy for you.

[Fluffybee in reply to Milkfairy]

Thank you, I’ll ask about swapping my meds around as I don’t know which ones to move about so I’ll ask his advice, maybe he’ll change something, just need to get that appointment !!!!!

Many more people with much more serious conditions than I have, so need to get on with things until then. 😊

[scotsrish in reply to Milkfairy]

Has anyone tried Dr Ho. My cardiologist told me yesterday that her team has witnessed huge angina pain relief in some of their patients that use it.

[Milkfairy Heart Star in reply to scotsrish]

Hi Scotsrish

I use a TENS machine Transcutaneous electrical nerve stimulation .

It's the same machine that women use in labour.

If you live with vasospastic and or Microvascular angina you need to check with your Cardiologist that it's okay to use.

You cannot use TENS or a 'Dr Ho' also a type of TENS machine if you have a pacemaker.

Nor can you wear it for too long as it can make your skin sore. I also know it's time to go in to hospital when the TENS no longer helps me or I have to turn it up so much it starts hurting.

[Hidden]

Have you had a better day today fluffybee ?

[Fluffybee in reply to Hidden]

Hi thanks for asking, about the same, I’ve been to my Gp.

He messaged my cardiologist last time I went to see him about 3 weeks ago and wasn’t well, the hospital haven’t responded, if I hadn’t spoke to him today he wouldn’t have known and thought I’d been contacted directly.

I’m just hoping it calms down again like yesterday. If not I’m going to have to go to the hospital tonight.

Just bit frightened to go 🥴 stupid isn’t it !!!

[Hidden in reply to Fluffybee]

My situation is a little different to yours but also similar in some respects. I had a stent fitted due to some mild angina, since then I have had angina consistently every single day. The constant pain, dizziness is soul destroying and has affected every part of my life and confidence. Since then I have test after test, including a further angiogram which has come up as all is well, I feel like the boy who cried wolf 🐺 . I have visited A&E upteen times due to constant chest pain/ ache, and each time have been sent away saying nothing is wrong with me.

Overtime I have come to live with the pain and associated fear and learnt to pace myself, in truth the only time I’m pain free is during heavy cardiovascular exercise. When I tell cardiologists this I’m laughed out the door as this is deemed impossible. I also went privately to see a consultant who informed me that I might have a coronary artery spasm due to the cardiovascular system rejecting the stent. However, I still visit A&E if I get a pain change to have my trops checked to be on the safe side.

I’m on nitrates and Amlodipine which does help but some days are just horrendous. I did try Ranexa for a while which didn’t make much of a difference however I know that it does work miracles for some folk.

[Sunshinebrew in reply to Hidden]

Hi

I also have 3 stents fitted in my LAD about 3 years ago and have since been diagnosed with microvascular and vasospatic angina due to the symptoms of chest pain breathlessness and extreme tiredness continuing after my stents. Have had a further 3 angiograms to check them which were fine. Since my diagnosis have been see I g a cardiologist and trying medication to manage the symptoms. I am currently taking slow release nitrates and ranolazine for the angina along with aspirin statins and a betablocker

I get good and bad days but the condition is more recognised now I think, however I do sympathise with you and can empathise with your experience, there have been times when I was told my pain was not cardiac and must be anxiety indigestion or gallstones, another thing is that I can feel okay and exercise then get pain later which is common for MVA. I've since discovered.

keep positive your not on your own

[Milkfairy Heart Star in reply to Fluffybee]

Hi Fluffybee

I am glad you made contact with your GP.

I hope you continue to feel a little more at ease.

I don't like going to hospital either. What is stopping you from going?

[Fluffybee in reply to Milkfairy]

I’m just worried that I’ll go there not many Drs know about what we have so may doubt me and look daft, maybe have another angiogram which will be clear my last one was in February/March time.

And the fact nothing can be done to make it completely go away and don’t want to be reminded of that again and given yet more meds etc etc sorry endless list

[Milkfairy Heart Star in reply to Fluffybee]

Fluffybee

I have been through all the same nonsense too. I have had some very supportive and compassionate care too.

Since my diagnosis 8 years I have noticed that there is a growing awareness of the conditions. Not as fast as we need but things are getting better.

[Sunshinebrew]

I understand exactly what you mean I've had the same experience in A and E especially before my diagnosis, making me feel like a fraud or as if it's all in my mind!!! but when I was in hospital last week to be assessed the doctors were very aware of my diagnosis had clearly read my notes and were very supportive and I was checked and given stronger medication on the condition I return if no improvement and was home within 4 hours. I was sure it was Angina but it's still reassuring to get the ECG and blood done just in case.

The cardiologist I saw said he would be letting my cardiologist know I had been in and he may bring my next outpatients appointment f orward. I am feeling better than I was and feel well looked after, with my symptoms taken seriously.

[Fluffybee in reply to Sunshinebrew]

My Gp has just got in touch with the cardiologist and I now have a telephone consultation in 2 weeks 🥳🥳🥳

Who would think an appointment would make someone’s day !!!! I’ve got something to dim for now and hopefully keep away from all medical facilities until then !!!!

Just got a tooth abscess and my poor dog is really unwell, apart from that I think it’s all ok 😷

[Sunshinebrew in reply to Fluffybee]

Good you've got an appointment with cardiologist keep a diary over the next 2 weeks and make a note if any questions so you can get the most out of it

I hope your dog is okay too

Take care

[Milkfairy Heart Star]

I agree with Sunshinebrew.

Nothing to add from me other than I send my good wishes regarding your tooth and poorly dog.