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AVM Survivors Network

Can your ears do this?


#1

Can your ears do this? Or am I just special? As I sit here typing this, my right ear is doing the pulsatile tinnitus that is literally so loud that I often have a hard time hearing overtop of it. My left ear? No pulsatiling for it, no, it’s solid noise - but here’s the kicker, I would best describe it as either the sound of a jet engine from inside the plane or what your ears would sound like if an IED went off about 30 ft away. But it changes pitch some times. That’s the odd thing. It’s like an old transistor radio where you turn the dial and the “pitch” of the static changes? Yeah, that’s my left ear.
Any idea what that is and how to get used to putting up with that?

Or better yet, how to make it go away?

TJ


#2

TJ

You ask the hardest questions!

At work, one of the managers who deals with contracts, etc always says to me when I’m asking about his space, “Richard, your questions are always difficult!”

That’s because the easy ones I can work out for myself. So he’s right, I do always go to him for the difficult ones.

So… no idea. But I just wanted to share some social time with you and share a bit of love.

I can waggle my ears, if that helps. Not many people can do that :slight_smile:

Very best wishes,

Richard


#3

Hello TJ,

I also had pulsatile tinnitus in my left ear, that was the main symptom of my AVM, it was very disturbing, getting as worse that I could not sleep. First I observed that I heard some whooshing noise while keeping my head in specific positions then it became stronger and constant in a few months, that was when I did a CT and MRI scan which showed that I have an AVM in my left frontal lobe with 2 intranidal aneurysms already formed, so basically I heard my own blood flow. I had 4 embolization interventions and the noise gradually disappeared after each surgery, now I cannot hear it anymore, thank God. I think you should discuss this with your neurosurgeon, mine said that the accumulated blood in one small place and the pressure which was already forming 2 aneurysms were causing this noise.
Regards :slight_smile:


#4

Hey TJ!
I have had tinnitus since 12yrs. On the date of the rupture, it was ALL I could hear, for about a day. Tried all the cures I heard of, nothing worked. Then my Neuro Doc suggested Botos. I had injections every 48 days, injected 3 spots on each ear, along back edge of ears. It started working at 2 months. Left ear went silent of tinnitus, right ear went down to 1/3. But the loudest tinnitus was coming from the stem, that’s what it felt like. It was not affected by Botox. Overall, the tinnitus was turned down from 10+ to 2 or 3. Then this December, my insurance company cut me off by reducing my insurance coverage so Botox was no longer covered. Within 2 weeks, all the tinnitus came back at full volume. I had that coverage for 4 years, then they became someone else.
Hope this info helps you in some way.
Later!


#5

I would definately get it checked out if it gets worse or concerns you… God bless!


#6

Adrian, Thanks. I’ve got the best ENT docs and Audiologists in Grand Rapids and the Otolaryngology group at U of M involved too. We’re watching it very closely, just don’t know why it will change pitch some times…

TJ


#7

I’m beginning to think my pulsatile tinnitus gets louder when I’m tired…how does that make any sense? In the morning it is hardly there, when I go to bed at night it is obvious…anyone else experience this or is it maybe my overactive mind!


#8

Hmmm, I’ll have to pay attention to that. So, if so does that mean we should all go back to preschool and have our doctors prescribe a nap every afternoon? :slight_smile:


#9

All for the afternoon nap!


#10

I agree that it tinnitus gets louder when I’m tired. I’ve had tinnitus for I don’t even know how long, I can’t remember when I started hearing it exactly but I do know it was after I was diagnoised with trigeminal nueralgia. It’s definitely louder when I’m tired and it seems to be louder when I have a migraine.

I’ve been advised there is no cure and really no treatment for it (at least not really). The best suggestion I have is going to sound silly but here it goes – try to NOT listen to the noise. Keep yourself distract with other things, treat it like white noise and don’t focus on it, don’t ask yourself “is my ear ringing?”

azurelle