Hi all.
My first time posting, but I have been doing lots of reading and gleaning a lot of valuable insight into what I too am suffering from.
I hope I’m posting this correctly.
I am just wondering, when you begin experiencing a new symptom, do you go to your ENT or Neurologist?
I’ve started experiencing this heart beat sound in my left ear. Very weird and scary, I can literally hear it.
Welcome Laurene!
Whoever is your current primary care giver and who is giving you the current therapy.
They can always refer you if they see fit.
Tinnitus is extremely annoying and can cause a lot of anxiety. I still have it, I’m afraid, over 5 years on from when it started and it periodically matches my heartbeat. There is nothing science or medicine can do to fix it, it seems, I just hope that one day my body resolves whatever is causing it (all the rest of my symptoms are looooong gone now).
It is a bit less than it was 5 years ago though and I find it much less distracting now, a combination of having got used to it and it getting a little better.
I have heard stories of people getting rid of it after 10 years of having it - seriously! So there is hope. Unfortunately you have to have patience with MAV in general!
Thanks so much for your response.
I don’t have a primary care giver at present. I last saw a Neurologist about 4 years ago who diagnosed me with MV. He put me on Lamatrogine and I’ve just been taking that ever since.
The heartbeat sound in my ear is new, so thinking I need to see a doctor about it.
Feel free, but to manage your expectations, if it’s come on without any obvious cause it may just be a morphing of your MAV.
Mine came on pretty much at the same time as my chronic symptoms, but can happen differently for different people.
You may find yours is intermittent and goes away for long periods.
That does make sense.
So I may just be wasting money by even going to see an ENT? I made my appointment today and it’s for tomorrow. January is a lean month, but was hoping for some answers as I’ve never ever experienced a heart beat in my ear. It’s distracting and freaking me out.
If it’s something normal with MV, I would prefer to save the consult money.
It’s totally personal.
I went crazy for a while on consultants and got 4 different opinions. After that I decided that going to more was just not worth it and I knew everything I needed to look after myself anyway.
I think you have to see enough doctors to get comfortable that there is nothing more they can do (which is kind of a grieving thing too). Once you’ve reached that point I’d save your money, but you do what you need to do for your personal satisfaction.
Thanks for your advice, it is very appreciated.
Is hearing your heart beat in your ear one of the normal symptoms of our condition?
Not everyone gets it, but it’s fairly common, I’d say! 
Funnily enough, I’ve developed an intermittent ringing in my good ear which is far more annoying! Because the tinnitus in my left ear is pretty much constant I’ve mostly got used to it. When the ringing happens in my ‘good’ ear it’s very distracting! lol
Oh no… 
I’m so sorry to hear about the ringing. I hope that passes soon.
I forgot to mention that when water goes into my left ear, I immediately feel this coldness in my left eye. So crazy and freaks me out too.
Anyone experience that?
That sounds odd. Perhaps the ENT should take a look?
I went to see him, didn’t glean much info.
He was concerned with the hearing of the heartbeat, said it’s not normal and he would like to do a CT Angiogram. At ZAR16000, I told him budget certainly does not allow it. 
He should’ve explained it in detail to you. That situation is certainly odd.
What you describe in your ear, the heartbeat sound, is a common experience for many and may just be due to ear congestion and may go away on its own. Try an ENT doctor for that. If the heartbeat sound changes to anything else – white noise, beeps, buzzes, siren-like sound, and many other variations – then that is really tinnitus. I’d still start with an ENT doc and see if he wants to send you to a neurologist too.
Thanks so much Judy, that is very helpful.