Advice please

[Benji_Mum]

Hi, I seem to go through stages of suddenly feeling not connected with my body, walking not in a straight line and feeling out of it. Not all the time but maybe once or twice a week. Biscuspid aortic valve and 5.2cm ascending aortic aneurysm. Being monitored by heart hospital. They state no stenosis but when I google results states mild. Any advice gladly taken

[Benji_Mum]

I don't want to bother as hospital I go to seem to brush what I say under carpet.

[bantam12 in reply to Benji_Mum]

Have you had your thyroid tested ?

[Benji_Mum in reply to bantam12]

Yes, no issues there

[Benji_Mum]

Thank you for reply.. not looking for false assurance at all though. I had a horrid experience with my first appointment with hospital doctor.... so not sure to trust. Next 3 6 monthly appointments were better. I look at my letters once they arrive due to first horrid experience. I gave mild ste

[Benji_Mum in reply to Benji_Mum]

Stenosis yet they are knocking it down. My aortic aneurysm is 5.2cm and wont operate til its 5.5cm

[Staceyhunter in reply to Benji_Mum]

How did you manage to get diagnosed with an aneurysm? What were your symptoms?

[MichaelJH Heart Star]

What medication are you currently on and have there beeb recent changes?

[Benji_Mum in reply to MichaelJH]

On beta blockers from last year. I get this every so often also ringing in my ears. Think I will go to GP this week

[MichaelJH Heart Star in reply to Benji_Mum]

Has your BP been checked recently - it could possibly be episodes of hypotension? *!

[Benji_Mum in reply to MichaelJH]

Will get it checked. Thanks for reply

[Nathan53]

I know it's difficult when you have had bad experiences in the past but they can make you more prepared to challenge unhelpful comments of medics etc in future. In addition to advice already given ask GP if your symptoms could be related to an ear problem in view of what you say about tinnitus and loss of balance walking. Link attached nhs.uk/conditions/labyrinth...

Maybe take a list of your symptoms to discuss but see what GP thinks before raising ear theory.

[Janma123]

Has your vitamin b12, folate and d3 been checked? This is important if you take either metformin for diabetes or a PPI like omeprazole to protect your stomach.

[Egg-box]

It's many years ago now but the symptoms you describe are very similar to my own. My bicusped valve went through rapid deterioration due to infection (endocarditis) well worth checking with the GP to see if there's any markers for infection.

[Ruth8]

I too have had horrible experiences at my hospital which has knocked my confidence in them massively. BUT one thing I have learnt is in an over stretched hospital you have to stand up for yourself and make a bit of a fuss, you know your body!! I had to push for a referral to st George’s a few years ago and it felt horrible but it was the best thing I ever did as they took me seriously and actually listened!

Keep a journal of everything that happens, so write down what you were doing and how you felt, that makes it easier to talk to the doctors (I always forget exactly what happened)

I hope that’s a little helpful!! And just keep going, you can do this!!!

[Cavalierrubie]

Could be side effects of drugs, if all your numbers are ok. Best of luck and cyber hugs.

[Fortepiano]

Mild stenosis of a bicuspid valve and aortic aneurysm are both completely asymptomatic conditions and will not therefore be the cause of your symptoms. There are guidelines on when to operate and you are having proper follow-up.

I suggest making an appointment with your GP. You could also occasionally be a bit dizzy from the beta-blockers dropping your blood pressure - have you got a BP monitor?

[Milkfairy Heart Star]

Hi Benji_Mum

None of us here on the forum are healthcare professionals so cannot say why you are experiencing your symptoms.

As others have suggested you perhaps should discuss your symptoms with your GP.

Or ring the BHF helpline and speak to one of the Cardiac nurses

bhf.org.uk/informationsuppo...

[Benji_Mum]

Thanks everyone. I will go to see my GP. BaV and anyersum diagnosed when having panic attacks by sheer chance. Blood pressure up and down and have BP monitor at home. Can be anything from 110/60 to 155/95

[Cat04]

I have BAV with moderate stenosis and dilated aorta under surveillance. Also PAF. BP also varies tremendously -(87/51, 207/109 ,147/125) I get episodes of swaying, being unbalanced, walking into things and it was suggested that as I am at high risk of it, I have suffered a mild stroke but as there was nothing to be done about it if I had, no further investigation was needed. Hope you get some answers from GP/cardiology.

[isobelhannah18]

It could be low blood sugar. Anxiety can also make you feel a bit weird.

[Ianc2]

I was told to drink at least 2 .5 litres of water a day to maintain blood volumes and avoid blood pressure variations. It is a fair amount of fluid and does pass through quite quickly, but it does seem to help.

[Benji_Mum]

Thank you