Help! Mitral Valve Prolapse with MAD ... - British Heart Fou...

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Help! Mitral Valve Prolapse with MAD and mild regurgitation

bean1129 profile image
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Hi! I'm new to this community here and I was wondering if anyone will be able to help me with the diagnosis that I was given by my cardiologist! Also sorry about the lengthy post :( I have been feeling extremely frustrated and confused and I have no idea who I can talk to since no one around me have even heard of this condition :(

I'm currently 23 and I was admitted into the hospital for pneumonia and myocarditis back in July this year and it was by chance through ECHO that the doctor found out I have bi-leaflet mitral valve prolapse with mild regurgitation. He also said I have something called Mitral Annular Disjunction (MAD) which is apparently a very "new phenomenon" (he quoted) and not much information was passed onto me in terms of what that meant for me.

So of course, I ended up having to google but like he said, there's not much information that talked about the condition (especially MAD)... I was wondering if there will be anyone here that will be able to help me digest what having MVP with MAD and regurgitation means for me and how it will affect my life as I age...

I have also been experiencing my heart beating extremely hard, as if it's going to jump out of my chest at random times throughout the day, and sometimes when I'm just sitting doing nothing, my heart rate would go from 60 to 100+bpm... I wasn't able to sleep for an hour yesterday at night because of this... I am also constantly exhausted even if I have a good nights sleep and I always wake up feeling like I didn't even sleep at all... and I am always so breathless after just crossing the road... I have had episodes of me almost fainting but I don't... Instead my vision goes completely black and I lose my balance but I retain consciousness... I had to go see a neurologist and she just said it could be my low blood pressure.

I have taken numerous ECG tests and they have all come back as normal since my heart 'palpitations' occur at random times and I've also done a holter monitor for 24hours which also came back as normal. I now carry around Kardia (portable ECG) to use when I feel those strong/fast heartbeats but I haven't been able to 'catch' anything yet... The cardiologist suspects that I may have something called Inappropriate Sinus Tachycardia? but it wasn't properly diagnosed. He also prescribed me Ivabradine to take if I wanted to if those symptoms were affecting my daily life but since I haven't been diagnosed properly, I'm reluctant in taking those medications.

My question in regards to above is, could mitral valve prolapse be causing all of the other symptoms that I have been experiencing? Or would it be something completely different? My cardiologist thinks it could be arrythmia because of the MAD condition but everything came back normal! And he just said "everything looks normal"...

I've been experiencing those symptoms for more than 7 years and I am just feeling frustrated since I basically came out with more questions and no answers after visiting my cardiologist and I would love to have a solution to some of the symptoms that I've been feeling even if it means taking Ivabradine :(

Thank you to anyone that actually read my whole post and sorry again for my long essay :(

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daveofpensby profile image
daveofpensby

Hi

Sorry to hear about your conditions I don’t know much about it but if I were you talk to the heart nurses at BHF they have a help line Monday to Friday they are very good also see your own doctor and talk to him or her about it, the other thing ask your doctor to refer you to the local cardio rehab unit they are very good.

I know how I felt when I was diagnosed with heart failure and then just sent home to await further appointments they gave me no information and I didn’t ask because I was in shock BHF nurses where very good at giving me info and pointing me in the right direction for further help

Good luck hope everything works out for you

NinaLu profile image
NinaLu

Hi! I got the same thing! Email me if you wish to chat !

Unanak @ Hotmail.com

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