Need some advice feeling rubbish re h... - British Heart Fou...

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Need some advice feeling rubbish re heart

jillofish profile image
18 Replies

Hi all I would really like some advice ok so I was told after an eco that I had Ef of 35% I have mild mitral regurgitation and heart sound revealed a pansystolic murmur. Daily I suffer with cheat pain sometimes radiates to arm, palpitations at least 3 /4 times a day on a good day. I have had days where my cheat will “jump about” constantly for a good hour or so . I’m falling asleep during the day cannot complete anything even simple housework without needing constant breaks and when laying down or even at rest I feel like I can’t breath . I have just had an angiogram and they said no blockages but heart muscle is weak so they sending me for an mri . I feel so fed up I thought I would go to the angiogram maby have a stent and finally get answers or feel better but that wasn’t the case. Just feeling fed up with not knowing if somthing is wrong why wasn’t it shown on angio. I asked about the tiny valves and was assured they could see they was all ok .

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jillofish
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18 Replies
jillofish profile image
jillofish

Would really just like to know if anybody has these symptoms and still had a good angiogram . What can make the heart muscle weaken . Thanku all for advice

Dolphin14 profile image
Dolphin14 in reply tojillofish

Hi

Just curious, do you have sleep apnea? You said you can't stay awake during the day

jillofish profile image
jillofish in reply toDolphin14

No I sleep well at night also lol just get overwealmingly tired during the day

Dolphin14 profile image
Dolphin14 in reply tojillofish

I was just curious as apnea can effect the heart over time.

I hope you get answers to your questions soon.

Stay well

Janshageo profile image
Janshageo in reply toDolphin14

hi how does it affect the heart pls

Dolphin14 profile image
Dolphin14 in reply toJanshageo

mayoclinic.org/diseases-con...

This may answer some questions. I'm hoping it's ok to put up the link

🐬

Milkfairy profile image
MilkfairyHeart Star

Hi jillofish,

I am sorry that you feeling rubbish at the moment.

I live with alot of chest pain and the symptoms you describe too.

My coronary arteries are clear as well.

However the cause of my problems are different. I live with coronary vasospastic angina my blood vessels constrict which temporarily reduces the amount of blood going to my heart muscle.

The heart muscle needs to be able to work well and pump blood to the heart itself as well as the whole body.

When the body demands more blood supply due to exercise etc than the heart can supply the lack of blood can cause chest pain and breathlessness.

I find it incredibly frustrating that sometimes I can't complete a task and have to pace myself with periods of rest.

I hope the MRI helps the Cardiologists gain the information they need to help find the medication to treat you best.

In the meantime perhaps go and talk to your GP about how you are feeling and they maybe able to provide you with some other support and suggestions.

Also the Cardiac nurses on the BHF Helpline are very helpful.

bhf.org.uk/informationsuppo...

Calliope153 profile image
Calliope153

Sorry to hear you feel so unwell. Just a quick suggestion which could help you when you;re trying to sleep/rest and feel you can;t breathe, prop yourself up on at least 4 pillows. I can;t breathe when I go flat - GP tells me this isn't the case (oh yes it is, husband wakes me up to say get back on the pillows he can hear me gasping) but try it and see if it works for you. Take care.

cowparsley profile image
cowparsley

I also have heart failure but don`t know what causes it in the first place.I used to be super fit,kyaking,swimming,walking,gym,that was 10 years ago now I have to accept my limitations and stay as active as possible.You can lead a normal,active life with heart failure,accepting and giving in to the tiredness.You`re probably very worried and upset at the diagnosis which is making your symptoms worse.Do hope you get it sorted satisfactorily,all the very best for the future. Jenxx

jillofish profile image
jillofish

Thanku all so much for your advice and well wishes, such lovely people on here. I had an episode a few weeks ago where my heart felt like it was going mad for a good hour then stopped and calmed down then started again . It was like a continuous palpitation one affrer the other and quite a bit of pain . It’s scary when it happens but honestly reading all your stories and advice really helps so thanku x

Emongs profile image
Emongs

Hi Jillofish

Having suffered a similar diagnosis some years ago perhaps I can offer some words of encouragement.

I was diagnosed with cardiomyopathy at the age of 40 after a period of fatigue, chronic palpitations & sleeplessness lying flat. Initially my EF was 48% and treatment other than medication to control blood pressure was “watch & see”, I was advised to sleep in an elevated position which did help for a time. Three years after that diagnosis after a few days of shortness of breath & an unrelenting cough, I went into total heart failure-went to bed one night & two hours later woke with extreme breathlessness where an ambulance was called and to cut a long story short was air lifted to a major cardiac hospital in our state(I live in Australia) where every conceivable test was conducted including an angiogram( no blockages) but an echo revealed my EF had dropped to 28%. After more tests the cardiomyopathy was said to be idiopathic (No, I don’t drink which can sometimes be the cause) basically the cause is unknown. I was told if my EF didn’t drastically improve I would be facing a heart transplant- scary stuff when you’re so young. The good news is that twenty two years on & with the wonders of modern medicine my E F is now 46%. I live a perfectly normal life even with the compromised heart muscle. Trust your coronary care team. Yes, the wheels can take time to start turning but the fact that there’s no blockages is a major plus. Try sleeping in an elevated position, take things a little easier while you’re waiting on a diagnosis & most of all eat healthy & be kind to yourself. I hope you get an answer soon.

Ianc2 profile image
Ianc2

Your heart needs some regular gentle exercise. Try and find a flat path and do a daily mile, more if you can manage it. I am lucky, I live near an old railway line that has been turned into a path.

Your heart is like any other muscle you have to use it or lose it. Have a look at your lifestyle and your weight. It all helps.

Sunnie2day profile image
Sunnie2day in reply toIanc2

You're so right about needing some exercise but I have to say sometimes even if one's condition permits light exercise, getting up the courage to actually get out there and do it is too daunting. I have 'multiple' conditions (none of which are HF) two of which cause angina - scary angina that made me too frightened to 'get out there' as I was genuinely afraid I was going to collapse on the pavements. Not having a definitive diagnosis was the ugly icing on the cake as I was genuinely afraid if I moved the wrong way I'd end up in more trouble than I already was. Talk about yer anxiety inducing moments, wowsa!

I'm more sorted now - am under cardiac care, know what's going on 'in there', and am wearing an engraved MedicAlert bracelet so if I do collapse First Responders (or a good Samaritan member of the public) can look at the bracelet to see what is listed. Real confidence builder to have that bracelet and the cardiologist (and GP) approved self-directed walking programme is beginning to show results including, surprisingly, improved energy - the more I move the better my energy level.

But oh how I do empathise with Jillofish - until a definitive diagnosis is made, it's too worrying, and on so many levels.

Ianc2 profile image
Ianc2 in reply toSunnie2day

Have a go at Nordic walking with two walking poles. Helps to get you left arm active and forms a stable platform if you want to stop for a blow. Good to hear that you have a switched on GP. Take a mobile phone and keep on improving!

Sunnie2day profile image
Sunnie2day in reply toIanc2

My husband cannot wait with any patience for me to get back to hill walking (with poles, of course:) ) I do think at the rate I'm going I'll be back adding to my Munro count-off by next summer (2020).

Right now I have a tick-list for leaving the house - mobile, tick; GTN spray, tick; MedicAlert bracelet still on, tick; MedicAlert wallet card in hip bag or back pocket, tick...

Milkfairy profile image
MilkfairyHeart Star in reply toSunnie2day

Sounds like my checklist😁

Admission plan

Latest clinic letters

Angiogram and MRI reports.

Copies of my ECGs

Tablets

Mobile

I managed to walk up Haystacks 1800ft of ascent and 8 miles last week. Not bad considering I was in CCU just before Easter.

I love my poles like a bannister to help get you up and down the hills.

Knowing my diagnosis is very important it helps me manage my condition and gives me the confidence to get out my front door.

Sunnie2day you are so right about how the waiting for a diagnosis is so difficult!

unluckyto profile image
unluckyto

Hi I now the feeling lol y ef is a whopping 4% but get tied sometime s

HeartyJames profile image
HeartyJames

Hi Jillofish. It's awful isn't it.. I also had angio this week too and echo but already have a blocked artery and Heart failure. Like you though, terrible fatique, very breathless, 35% EF, chest pain (angina) and down both arms (very dull but intense) on exertion. Also with me, no further blockages but I expected that. I also concur it is so draining and frustrating to the extreme as they cannot do much except drugs. The angio just checks for large arteries and will not pick up the smaller vessels and heart failure managed usually by drugs. Its not a nice feeling when they say the large vessels are ok when you hope for a quick stent fix. I find some cardiologists are very understanding and supportive were as others are dismissive and blunt in a very unhelpful way. With my echo it clearly states severe LVSD and right ventricur and other chambers dilated/impaired. This of course is why we feel as we do.

Take care

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