Bicuspid Aortic Valve and suffering from being light headed

[Carefree16]

Hi guys

So recently I was diagnosed with having a bicuspid aortic valve with mild thickening of the valve and a moderate leak. Apparently I’ve had it since birth - I only found out inadvertently as I went into the hospital for a check up for something totally different.

A bit of a shock to the system to be fair but having had the chance to digest the information and speak to the cardiologist I’ve been told that it’s at a very low stage at the moment. They’ll only want to see me for a yearly symptomatic appointment and a two yearly scan appointment.

My concern right now is I feel light headed. My head feels a little heavy. I can’t imagine it would be symptoms from the condition I have as I’m assuming it would take time for the symptoms to kick in. Has anybody else been experiencing this? Could it be something that’s viral as I know somebody else who’s suffering from it? Contacted my GP who’s suggested having my blood pressure checked for a week. So far the readings have been normal and nothing to worry about. I’ve also got blood tests (in 3 weeks time though).

Also, from time to time I suffer from breathlessness. It’s something that comes and goes and not something I have regularly.

Apologies in advance for the long post, I’m just a bit concerned that’s all. Any advice, help would be much appreciated. (Also, it don’t help using doctor google as you find out all sorts of information of which a lot is scare mongering so I just stick to this website now)

[Alisbabas]

Hi,

I am the same, I've been getting out of breath and light headed when I go up more than 2 flights of stairs, I rang my cardiologist secretary and she rang back saying it wasn’t my heart as my scan from last September was ok.

I had severe dull centre chest ache after running up the stairs a few weeks ago right through to my back after I lay down. The next day it felt like my heart had run a marathon it was very achey. I rang BHF nurse and she told me to go to A&E but it was over a day after. The nurse said I might had small vessel angina as I told her I had a clear angiogram in 2018, I had chest pain which is what led them to finding my Bicuspid valve with mildly enlarged aorta.

All was clear there at A&E but the doctor said my valve still could cause pressure pain due to the blood being more forced through the valve although my cardiologist said it wouldn’t?

I’ve never seen my cardiologist by the way only seen nurses

I hope you find the answers because I haven’t

Take care

Ali

[Carefree16 in reply to Alisbabas]

I’ve only been suffering from light headedness for the past week but I feel as though I don’t want to go out or do anything active.

I hope it starts to clear up for you. It’s not nice to feel woozy and all over the place. It don’t help with al this Covid malarkey going on aw well.

All the best.

[road2ruin]

Hi, I too had a bicuspid aortic valve, they are a birth abnormality and most people don't notice them until they are 60+.

I had mine replaced last year with a mechanical valve as it was now severe, but I didnt suffer any light headedness just being breathless after moderate exercise. I was 49/50 when mine was done, 50 while in hospital, great birthday there, and only noticed due to chest pain while cycling up hills.

Stress of knowing you have a condition will of course play tricks with you too..

Good luck.

Any questions please ask.

Pete

[Carefree16 in reply to road2ruin]

I have to agree about the stress. My wife thinks anxiety is kicking in and that’s why I’m potentially having these light headed periods.

It’s a question of having a heavy head, sometimes with pins and needles in my feet.

I’ve started to notice feelings in my chest a lot more! I must say I never did recognise them before my diagnosis over 3 weeks ago so yes I’d say the mind is playing tricks.

Thanks for sharing your thoughts, it is helpful.

[Alisbabas in reply to Carefree16]

I had chest pain that led me to the hospital where they picked it up so I had mine before I knew

[Mikedabike]

I managed to find your earlier post where you say you are fit and healthy. This is good news as being fit and healthy certainly helps with the condition. I didn’t even know what a bicuspid valve was, until I was diagnosed with mild aortic stenosis at the age 61. Luckily I had always kept myself very fit and active. I was told I would only need annual check ups to monitor the condition. I guess each person is very different, as within 8 months of that initial diagnosis I had an AVR. Now the proud owner of a mechanical aortic valve. The procedure is very common these days, and once it was realised that I needed the operation the service and treatment I received was second to none. I personally had problems in trying to get across to my cardiologist how I felt something was not quite right. I would say, listen to your body. If something doesn’t feel right, have it checked out. Do not be afraid of consulting with your GP or cardiologist. If you still feel things are not quite right, do not be afraid to seek a second opinion. Good luck.

[Carefree16 in reply to Mikedabike]

I’m really pleased to hear your whole procedure went well. Initially it was the thought of - what’s wrong with me? Why me? I’ve got a young family etc etc. Having had the chance to explore it further, speak to the cardiologist nurse, I’ve now been able to digest it and understand it better.

Are you back to physical exercise now? How long did it take to get back into the swing of it? And yes you are right, if anything does feel out of turn I’ll be contacting my gp 👍

[Mikedabike in reply to Carefree16]

My operation was December 2019. I’m back exercising quite intensely now. For the first three months I was exceptionally careful. Literally just walking, then slowly building up the time and distance. I found the cardiac rehab team were superb in advising me (I was halfway through cardiac rehab when lockdown commenced). In fact when I think back now I was quite scared to do any form of exercise until I attended the cardiac rehab sessions. Not to show off, but just to show what is achievable I’m a now cycling up to 30-50miles - slow and steady. Hillwalking in the Peak District anything from 6 to 18 miles. I have started back on kettlebells and body weight exercises, again though just very light and easy to start with. I have found the key is to listen to your body, and unlike when I was younger to ensure if I’m tired I have a complete day or two off. The reason I realised something was amiss before the operation was when my breathlessness just got more and more severe in quite a short space of time. It got to the stage when I was literally out of breath bending over to tie my shoes, or doing simple household tasks and just walking upstairs. I was quite reassured when I researched and found out what a common procedure AVR is. Naturally all procedures come with risk, but the operation is now so commonplace it definitely helped my state of mind. Sorry to ramble on, but hopefully this will help. Good luck.

[Carefree16]

Wow you certainly are making progress, well done!

You’re right, it’s best to listen to the body and make informed decisions.

I’ve read a few times about how commonplace the procedure is. It fills me with confidence knowing that if ever I need to go through it then it’ll be something that is very common these days.

Thanks for your advice. It’s certainly helpful.

[Kimstyles]

Hi had my aortic valve replaced but mine was sternois,

How every I did have symptoms prior . I had echo for a few Years then one June 16 I couldn’t walk up a small hill In Winchester with out stopping And breathless , it like a diy stress test so I wasn’t surprise when they say it moved into server , that was late June but By early sept it increased I started to get light headed just standing up from a chair and I had an ache in left side of my neck,

Sept watching rugby I walked across the screen just as they were about to go for a try my husband said get out the way ( he really is a loving man ) I moved quickly and collapse fainted blacked out ,

Now I was then very silly instead phoning 999 I phone 111 5 hours late told to go to GP who arranged for me to see dr Sunday at the Hospital next thing I’m wheeled chair in to critical care then blue light to Southampton ,

Looking back was so silly not go phone ambulance I was concerned it was just stress Doh and didn’t want to bother the ED !!! My consultant told me off,

!!!

I had mechanical valve aged 57 but I have trouble with warfarin it fluctuates im too sensitiveI also had a bleed in my knee fromWarfarin it so painful I’m just that unlucky person who sensitive with Warfarin Also surgeon reluctant to do Some surgery when on Warfarin Like I need joint replacement but they dint want to do it as I’m risk bleeding post op ect

. I wish I had bio valve ,