My name is Lucinda. My husband died last year from a glioblastoma brain tumour. I have been feeling ill for quite some time and all of a sudden last Thursday it all came on really badly. The intense weakness is overwhelming with heart fluttering and something that is squeezing behind my right eye which makes me feel dizzy frequently and makes my vision strange and distorted . I feel as though I am misfiring like a short circuit and I feel as though my whole body is in tremor. I was in an and e on Saturday and the doctor said she could hear a heart murmur and is querying either atrial fibrillation or aortic stenosis. I am walking my cocker spaniels once a day but I can only walk very slowly because I feel so weak. I have an echocardiogram and 24 hour heart monitor next week and the consultant in October. I know it sounds silly but I feel so frightened. I am trying to stay as calm as I can but it is so hard with this coming so suddenly. I don’t want to die before I get treatment - there is so much living to do. It is just me and my cocker spaniels since Alan died. Is anyone there for some support/advice please? Thank you SO much. Lucinda
Lucinda at the start of this journey - British Heart Fou...
Lucinda at the start of this journey
Hello, and welcome to the forum. I am so sorry to read your post, but know you are in the right place for help and support.
Having undiagnosed conditions is a very scary place to be, but know that you are now on their radar and things will be put into place to get you well again.
At the age of 68 I suddenly became very ill never had an illness before ( apart from the everyday things) never been in hospital ( apart from giving birth) I had all the tests and ended up having open heart surgery for a replacement aortic valve and a bypass. 8 years on I am still here! Grateful every day for being given a second chance.
An echocardiogram will show them how well your heart is functioning and the monitor will back this up. When you see your cardiologist he will be able to see if you need any other tests. You might be sent for an Angiogram which is what they call the gold standard, and this test will show even more of what is going on.
We are here to answer your questions and give you a shoulder to lean on if that’s what you need. We have been where you are now, scary I know but remember there is life after something like this, you will be in good hands with your medical team.
I send you very best wishes
Pauline
thank you so much for your kind, supportive reply. It is comforting knowing there are people who care🪷. Lucinda
Dealing with health concerns is not an easy thing to contend with as those of us with various conditions know only too well. You have lost your husband and having to cope with a whole new way of life. That alone is a big ask and now your current health issues add to the stress.
The heart tests you are having will show what is going on. If in the interim you feel ill then go back to a and e or your GP. Dont suffer in silence and worry yourself to distraction. If you can afford it you could pay to see a heart specialist sooner if you feel October is too long.
Remember you know your body the best and if you feel things arent right you need to speak to a relevant medic sooner rather than later. Its not easy in todays medical climate but put yourself first and push if needed. Stress wont be helping you so please seek medical advice rather than worry and exacerbate your symptoms. Once you have a diagnosis you can work with medics to sort things out for you. This not knowing is awful. Best wishes.
thank you so much for your reply. The fact that you care means so much. I am trying my very best. Lucinda
I’m so sorry you are going through it. A strain whilst you are undiagnosed - but, there are things you can do for yourself and for your pet. Both your spaniel and you are missing a loved one, so plenty of gentle walkies, preferably in the countryside or a park so that you can both experience the pleasures of nature.
Then, make sure you look after yourself as far as diet is concerned. You probably feel you don’t want to cook because you used to cook for two and now it’s one. But you still need good nutrition so make an effort to eat healthily with plenty of vegetables to support your body, and drink plenty of water.
Do keep coming back here and keep us I formed so we can offer our support if needed.
I promise i am trying really hard. Since sll this started last thursday i have thrown my butter away and no more chocolate/sugary things and i am not adding any salt tomy meals. It has scared me so much that i can't face this type if food now. Why is it necessary to drink plenty of water with s heart condition please? Lucinda
Keeps your blood at the right consistency (flowing nice and easy ) so your heart doesn’t have to put so much effort into pumping it round.
thank you🧋🌸
I tried to reply but I don’t think it worked . Thank you so much for your words. They are so understanding and supportive……thank you💐. Lucinda
Five years ago I had a health emergency with a diagnosis of severe heart failure. I am still here with my only mobility problems due to arthritis. Heart conditions are scary, but treatment is really effective these days.
You and your dogs should have a lot to look forward to.
Your reply is really helpful and I will try really hard not to be scared. Thank you SO much. Lucinda
Hello Lucinda, so very sorry to hear about your husband. It must have been a very worrying time for you, Caring for a loved one and watching them suffer is so traumatic. To now face this illness in the midst of your grief must be unbearable for you.
As everyone else has said, being undiagnosed is the worst time as you imagine the worst and Google is a blessing and a curse.
Just take things easy and only do what you can mange without over exerting yourself. You need rest and to relax. Any jobs on your to-do list can wait, just the essentials for now.
If you're really feeling unwell or you're worried at all, call 111, they will assess your symptoms and arrange to get paramedics or a doctor to you if they think you need them, they are really helpful and supportive.
You will get over this frightened stage as soon as you know exactly what's wrong and how it can be treated.
As you can see, everyone on this site is very supportive and a mine of information, I've learnt far more from people on this site than any doctor has actually explained to me.
I have 'suspected' microvascular disease, just had my angiogram cancelled and waiting for a new appointment. So I'm also in limbo at the moment, I've been through the frightened stage. I'm more aware of what I might have and learning to adapt to live with it.
Please post any time you need a friendly chat, we're all here for you.
Take care and keep us posted.
Thank you SO much for your lovely reply. Your words are so kind. I am trying really hard not to worry. It must be really awful to have your treatment postponed🥹. Of course I will let you know how things go……thank you very, very much. Lucinda xx
so many of us will identify with the panic and fear of knowing that there is something wrong with our heart but not knowing what. I’m sorry about your husband, my diagnosis came shortly after the illness and death of my dad and I’m sure the stress of taking care of a loved one as they are dying adds to heart problems. The waiting is the worst.
The first cardiologist I saw recommended more exercise. After diagnosis, my consultant said that for my specific issue this was dangerous and that if my body was telling me stop them to listen.
I’m now almost seven months post op and on my second holiday to Italy this month! Find your carrot and believe it will happen but know you will have difficult days and reach out when you need to.
Keep in touch xx
Your reply is so encouraging and inspirational…….thank you so much. Lucinda xx
Message anytime you need a chat xx
Hi I am 67 and lost my hubby 2 years ago,ended up in a&e last year with fluttering and had af, if like me,you desperately want your partner with you,but I hope you have close friends/family to support you,I now know if anything is so bad with your heart they would have admitted you,it's hard but you have to wait for the tests,I am not in af and was misdiagnosed as actually have a large hole in my heart apparently probably from birth- but I like to think my hubby took a piece of my heart with him x hope you are ok,we have to trust the drs
Thank you for telling me your story. I hope they can operate to correct your problem. Thank you so much for your encouraging words. Lucinda xx
Thanks unfortunately they are in a quandary as its a large hole not sure if having it closed as that could put me back into af
I will keep everything crossed for you. Try to have as nice a day as you can🌤️. Lucinda xx
Hello Lucinda
Firstly I’m so sorry to hear about your husband that alone is a huge source of upset and sorry and you’re in the very early stages of grief so be gentle with your self.
It doesn’t sounds silly to say your so frightened as we’ve all been there where you are now frightened but you will come through the other side .
I have atrial fibrillation and also had vision disturbances which for me was the most scary thing and I’ve just had open heart surgery 4 weeks ago which was really not as bad as I imagined and I’m already feeling so much better.
I was such an anxious person for so long but when I was diagnosed I seemed to find a new strength and decided to spend my time whilst waiting for surgery doing what I could do to help myself such as meditation journaling walking everyday ideally in nature eating healthily, seeing friends .
I even tried talking therapy which did help , all these daily routines distracted me and gave me a purpose to aim towards .
Take it one day at a time and be kind to yourself and you will get through the other side.
Please let us know how you get on x
The way you describe yourself sounds identical to me with the anxiety and visual disturbance with fluttering. I do hope I hear from you again. Thank you SO much for your inspirational, encouraging journey. Lucinda xx
Your welcome, and I’m here if you need to talk😊
I had looked after my mum for several years with heart problems then when she passed on I inherited all her symptoms - oh the irony I was convinced I was too young to even consider I’d got the same problem but gradually coming to terms with it all and looking forward to getting on with living even if it’s a different way of living it will still be good 😊
Stay in touch and take care x
Thank you very, very much. You have been through an awful time and I am so glad for you that you are hopefully coming out on the other side🌻😇. Lucinda xx
as soon as medical staff mention heart you go into panic. Having nobody close near you to help is upsetting and your imagination goes into overdrive.
You have come to the right forum for support . You will soon have a few answers from your medical team. Be open with them about your anxieties .
Good luck going forward . I hope things improve for you soon.
💝
Hello Lucinda. I'm so sorry to read of your circumstances. You will receive lots of support here. I'm in Australia so cannot be of any help with the practical side of things in the UK but I want to wish you the best for getting to the cause of your illness and getting the best treatment for it. Sandy xx
Sorry Eastwood25 but think you have sent to me instead of pinkysophie. Not a problem but she might not read it.
Pauline
Oh no that’s typical of me and tech lol I’ll delete and re try thank you for letting me know
I have got muddled😖. I am not too good with tech things but I’m glad you got the message xx
We are all part of the Hearties family, and here to help and support each other, my tech skills are limited but keep trying 😂
Hi Lucinda, stay positive and I know it's not easy not to worry but the more youbworry about your illness the worse it gets. Share your worries with family and friends. I was diagnosed with heart failure over a year ago at the age of 46 years. I was very worried as I was always tired and I was getting breathless after a short walk. I started walking slowly and after 10 minutes I had to stop to take a break.
I have learn now to take more rest when I need it. I am getting better now with all the medication I take and having regular check ups.
Don't wait for your next doctors appointment, if you feel any chest pain or any other illness quickly call your GP or A&E services.
I hope you get your treatment sooner than October.
Best wishes.
Christy
Hi Lucinda,firstly I’m sorry to hear about your husband it’s not an easy time for you. I was admitted to hospital in July 2019 after an echo cardiogram and diagnosed with severe heart failure, (which was late diagnosed as dilated cardiomyopathy)was given medication and booked in to have an ICD fitted, Sept 2019 my husband was too diagnosed with a brain Tumour and sadly passed Nov 2019, I was alone with 4 children- all older albeit, ICD implanted Jan 2020, fast forward I’m doing ok, def have my restrictions ie walking to fast and get tired but I’m ok, my ejection fraction has improved with the medication. Rest assured when you have your echocardiogram next week they will not let you home if there is anything that requires urgent intervention, you have your foot in the door now with cardiology which is good, I guess what I’m trying to say is there is hope and with the right medication you will get there- just try to rest when you feel tired and look after your self and your lovely dogs xx
That must have been so frightening for you. I do hope they have managed to sort you out now. Thank you for your lovely reply❤️. I’m glad you have children, even if you don’t get to see them every day. Unfortunately I had IVF but lost the baby so it is just literally me and the dogs now. I am trying really really hard with things. Lucinda xxx
One thing you could do immediately would be to book an eye appointment with an optician who works under the NHS “minor eye conditions” scheme (you should be able to get a list of participants from your GP surgery). They can check your eyes and do an OCT scan to check that everything is ok.
Hi Lucinda, My late husband had heart problems for over 20 years which has affected my health. I went to A&E several times over the years with similar problems to yours and very high BP, they sent me away every time with no treatment - until last September when they gave me a Troponin blood test which registered an extremely high 212. An angiogram revealed no blockages and I was diagnosed with Takotsubo cardiomyopathy. Maybe you too have this 'broken heart syndrome'.
I'd like to say I feel fine now but nearly a year later, I'm still very weak, get breathless easily and my BP still shoots up quite frequently. Your problem may be completely different to mine but the Troponin test was the only thing that made A&E take me seriously and at least it rules out many other heart problems. I hope you have answers really soon. Best wishes Pam
Dear Pam, Thank you so much for your lovely reply. I am already in candesartan for high blood pressure which was very high before this -185 over something or other and the candidates is effective. I will mention this to the cardiologist when I see him in October. I will make a note of the Troponin test. Thank you so much for your perception🌺. Lucinda xx
I mean candesartan
It seems like you have had a "double wammy"!!! Dont worry you are not alone, you'll find several cases like us and/or even worse...
In my own case, the Mrs eventually died years after bypass sugery! After covid, she got kidney failure then finally organ failure. Guess what, I got Hearty over a year ago (with stents) and struggling with staying active, trying to balance meds and new (slower) life style. This is now the new me.
Thank you….,this forum certainly does make me feel less isolated🪷. I have received so many lovely supportive replies. Lucinda xx
You are bound to be frightened not only are you worrying about your health but you are grieving for your darling husband. I was widowed 20 years aged 45. The moment the other half of you takes their last breath half of you dies with them. Suddenly you are no longer a couple but classed as single and I hate that. Your present and future dies to. You will always have the past and the memories of your life together but it's hard suddenly being on your own . Having to make all the decisions and coping with other people. When all you want to do is curl up in a ball and shut the world out.
I am now 66 and not a day goes by that I don't grieve for my husband he was the love of my life he completed me . As your husband completed you . Together you made a whole. I call the first 10 years the early years of grief . But grief is the price we pay for loving and being loved in return some people live their whole lives and never have that . As hard as it is we are the lucky ones . We know what true love is.
I was born disabled but it never phased my husband even when my health got worse he was their and just said we alter our way of life to suit what you can do and be a normal family. And we where I was a hands on mom only thing I couldn't do was go out by myself. I was always prepared to die first . It was an awful shock that it was my fit healthy husband got cancer and died 4 days after his 47th birthday.
Being ill makes the loss worse you want to be held and cry and say how you really feel but the only person who knew the real you and you them isn't there. So you can cry but not be held and know you can get through whatever life throws at you because you have eachother.
I was never frightened being on my own as my life was filled with taking care of my parents and mother in law until they died . The children had left home 2 years after my husband died it's what I wanted. But I could move to live closer to them. The moment my husband died the house was just a house it wasn't home as my husband was home as your husband was yours.
After my mom died 2017 I got jaundice. I didn't realise I was ill just thought life had caught up with me . In the end had to call the GP to see me. I couldn't see I was yellow and she wrote a letter to have me admitted to an acute ward. I was very frighten as I didn't know why I had jaundice turned out 2 tablets I had been taking since 1992 had attacked me liver.
All I wanted was my husband I have never felt so ill . In hospital for 5 days and for the first time I needed someone with me 24/7 there was no one . I have never felt so alone . I was serious ill for 5 months . I screamed, swore and shouted at my husband where are you when I need you. I know it sounds wicked but it made me feel better . Because after I had a rant I saw him with that stupid grin on his face.
My gastrologist discharged me r after 5 months and I was lucky no lasting liver damage but he did tell me people with my bilirubin levels normally died. Said glad you didn't tell me before.
The rage and anger I feel to this day over my husband dieing gets me through everyday day. If you feel the rage and anger hit you use it and fight to get through another day. Think what your husband would say to you . I am sure he would say fight to get well . But don't fight your feelings as you will only hurt yourself. I did that but what did I know about bone crushing grief at 45. I never what anyone to go through what I did because I thought it had to be brave for everyone. I was a fool.
Fear can be used for good as it will make you fight to live. Not just for yourself but for the time your husband is missing and for those who love and care for you.
You will get through this. Talk out loud to your husband everyday say all the things you are feeling I promise it helps . By saying it out loud it's stops it festering in your mind . Have a good cry ,swear,shout,scream even hit a pillow but do whatever will make you feel better. Even after 20 years grief can overwhelm me. It's very early days for you so be kind to yourself.
October will soon be here as time flies by . 🌹
Welcome to the forum and I'm sorry to read about your husband. I was fine until I was 69 when I started getting breathless. They did echo's etc and found I had a hole in my heart! It's now mended via surgery and I'm back doing what I enjoy. I know that out of the blue diagnosis is a shock, but you are among friends here. If you feel ill, go back to A&E and if needs be they can move you up the list. What is the name of your dog?
Oh….,,what an uplifting story🥹. I am so glad you are better now. My cocker spaniels are called pinky and Sophie. Thank you for your lovely words. Lucinda xx
What lovely dogs! Just think that if you walk slowly, it gives them longer to pick up Pee-mails left by other dogs 
Yes🤣. I do adore them and wouldn’t be without them. Lucinda xx
the worst bit for most people is the waiting to see the cardiologist as it seem a long time away . When you’ve had your echo and other tests they have to be “ measured read and Interpreted “ by the radiologist then forwarded to the cardiologist who will study them before he sees you they can bring your appointment forward if nothing is wrong or if they need to see you sooner if something is wrong . You won’t know which SO DONT PANIC save your energy to deal with life . If you feel worse or your symptoms get worse go to A&E . We are all ordinary people on this site and can’t diagnose but only support . X
Thank you for your reply. It is so lovely to have this forum because you don’t feel so alone with things. I am trying really hard to stay as calm as possible while I am waiting. Thank you. Lucinda
A doctor told me when I was seventeen that he'd detected a heart murmur. Being seventeen I was immortal (as well as stupid) and I took no notice whatsoever. Now I am seventy seven and after long years of physical and mental activity the doctors are still testing me for ectopics, atrial fibrillation but never find anything serious.
My advice is to just let the doctors do their bit and only start to worry if and when they start to sound worried.
Golly😇. Your story is really uplifting. It just shows that you can life a life with atrial fibrillation and just because someone has a particular condition doesn’t mean that’s it. I am trying really hard to stay calm while I am waiting. Thank you so much for your reply. Lucinda x
I had rheumatic fever 10times when a child which left me with mitral incompetence as scarring on the mitral valve was told at 21 this would cause me trouble later in my life fast forward to 74 and 3 children and a mitral busy life it d Much to my surprise it wasn't the damaged mitral valve but the aortic one which surgeon said was what happens Had it replaced last year and am so much better Things I was putting down to age vanished so go for what ever the docs recommend and you will be running around with your gorgeous dogs again
Thank you SO much for your reply. It does help hearing what has happened to you and makes me feel less alone. Thank you very much. The fact that having your aortic valve replaced successfully is wonderful for you. Thank you🐝. Lucinda
Good afternoon Lucinda
Firstly so sorry to hear that you are feeling unwell and naturally for your recent loss. I can fully understand your predicament...I agree with other on here... you are in the right place for help and support...let's be positive... clearly you quite rightly went to A & E , I presume they did tests there ECG and bloods, the results of which would indicate whether you needed to be kept in hospital..from you message it appears this was not tge case so tha is good.
It is good hat you have been referred to a consultant and as is the process, before you see him/ her... you will have a 24hr monitor and an echo before seeing him/her.
My only advise is remain positive, if you notice any changes/ deterioration immediately go to A & E or your Dr's.
Please get " Heart Matters " magazine as it is very informative and reassuring and will help you to understand your symptoms and provide unbiased information.
I, myself, was diagnosed with AF this year and have had a tough time not only in health matters but personal ones as well... anyway it's not about me..if possible keep walking and get exercise on a regular basis if you are truly up to it...keep going....youvwill feel better...I promise...it may however take a little time.
All the very best for you
Kind regards
Phil
Dear Phil,
Thank you very much for your reply and all your helpful advice. I will get Heart Matters magazine and I am trying my best to be positive. I am so sorry about your own difficulties - life can be gruelling and traumatic I know.
I am walking my cocker spaniels in the mornings but because I feel so weak I can only go very slowly and I am trying to keep going.
Thank you for your kindness.
With kind regards from
Lucinda
Hi Lucinda,
Of course you are frightened. I think that is perfectly normal and quite understandable given your circumstances. You are in the system now!! and you will be looked after by the professionals who will be able to guide you in the right direction once they find out what is happening to you and why. You will be given all the tests available to find out what, if anything, is wrong. This is about you now, so I would try to put yourself first and look after yourself the best you can. You have your wonderful wee dogs to keep you company, and I am sure that they are a source of enjoyment and comfort. If you feel at all unwell from now till October I would get in touch with your GP as soon as possible. The waiting is the worst, but once you know what is going on, you will be better able to cope with it. Take good care and look after yourself. xxxx
Thank you so much for your reply. Your support means so very much. Lucinda xxx
Could be HF from broken heart syndrome Takotsubo. This happens sometimes when we lose a loved one. Go to emergency if you are having anxiety and shortness of breath. Hope you feel better soon, HUGS.
hi Lucinda, I’m really sorry to hear about Alan and also that your not feeling too great at the moment. Welcome anyway.! I’m sure you will get some fantastic help and advice from everyone on here.👍
All the best.
Ron
Thank you…….your words are very kind. Lucinda
I think you may need a carotid artery scan. In your position I would see a consultant privately £300 opinion only. I’d choose a cardiologist.
Look up carotid artery stenosis and see if your symptoms fit that diagnosis.
Thank you very much for your reply. I looked it up in line and I definitely have frequent dizzy spells, heart fluttering and visual disturbances . I will try to see if I can see someone privately for a consultation and possibly a scan. I am seeing a consultant in early October anyway. After having my echocardiogram and monitor do I will mention these symptoms to him then. Thank you so much for your reply. Lucinda
It’s also worth noting that stenosis is usually associated with a loud systolic murmur which is often mistaken for aortic stenosis, You should easily be able to hear it, if it is there. Try it for yourself. If you can’t hear it it may be because the internal carotid on that side may be blocked. We can all manage with one normal internal carotid artery.
Of course this is all speculation on my part. Why not pop down to ask your GP if she can hear a murmur harsh systolic murmur over either internal carotid artery.
I can’t lie on my right side in bed because on that side I can hear and feel my heart or whatever it is really loudly and if I lie on my left side my chest feels too compressed so I have to lie on my back in bed. I don’t know why but my tummy also feels very distended and there is a very tender place just below the base of the sternum so j can’t wear any underwear as it is too uncomfortable. Sorry to give too much detail - it is only because I am scared. I know I have to wait to see the cardiology team but the wait is hard. Lucinda
What are you really scared of Lucinda? Don’t let your anxiety prevent you taking back control of your destiny. That way brings calm.
As for the possible murmur, just sit in a chair and see if you can find it. Or see your GP to see if she can.
Go to the GP surgery and ask to speak to the practice manager. If that is refused explain to reception that is a very private matter and just how worried about it you are. That usually works and you should have an appointment in 48 hours.
Don’t sit on your hands.
I have already been to the gp twice and I have an echocardiogram and 24 hour monitor this week and the consultant in two months time so I am doing all I can. I know it sounds rediculous but I am scared of dying from this…..sorry…….I know I am being silly. Lucinda
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