Pulsatile Tinnitus Gone Insane: Random Intense Whooshing Spikes

Hey guys, I was wondering if anyone here could advise me please. Sorry this post will be long but I appreciate any help.

I've had tons of ear issues my whole life, I've had Patulous Eustachian Tubes (autophony) since young, then as the years went on I developed regular tinnitus, high pitch sound, then a deep revving/humming tinnitus sounds and then pulsatile tinnitus, then a host of other things over the years - cholesteatoma, which I've had surgery for, tympanoplasty surgery on both ears to rebuild them as they were so retracted from years of sniffing in and doing the reverse valsalva maneuver to temporarily close my eustachian tubes so I could talk without the autophony (sounding like Darth Vader). Then I developed other regular tinnitus sound such as crickets chirping etc and I also have 3 different types of spasms (tonic tensor tympani syndrome/middle ear myoclonus), one type of spasms reacts to sounds and flutters in and out like a metal sheet, the other type is like thunder rumbling when I touch my face or eye or smile and another one is similar to random thumps, like a microphone being tapped rapidly. I also have constant sinus issues where they are quite blocked.

Anywho, my main concern is recently out of nowhere my pulsatile tinnitus has gone insane. Since my two surgeries years ago the pulsatile tinnitus did seem to settle and quieten and rarely bothered me, but the past week or so it has gone insane to the point I can't function that well. I can't sleep, and I've lost all appetite from being so anxious and low. I am managing now to get more food in each day but it has been a struggle when I don't feel any appetite from the stress. Even before my surgeries previously the pulsatile tinnitus was never this intense. The whooshing is just so insane and on top of all the other ear things this is breaking me and I'm not coping well. I have contacted one of my ear specialists and have an appointment but it's a little wait still and I'm losing my mind.

In the meantime I'm wondering if anyone on here had any ideas why it could suddenly get so crazy?

It legit feels like my ear and head are going to explode as the whooshing gets so intense.

Does anyone have any advice to help me until I see a specialist? I know no one can say for sure as we aren't doctors etc, but why would this suddenly get so intense after years of being mild?

It seems to be random in intensity as well, when it's really intense, which keeps happening, I feel like my ear will explode, but other times it quietens down again.

One thing I have noticed is whenever I sip water it will spike really intensely, although most of the time these strong spikes are random.

Does anyone have any idea about what they think could be causing this to come on so suddenly?

When I initially had pulsatile tinnitus looked into many years ago before I had either of my tympanoplasty/mastoid surgeries, my specialist did a CT scan with dye, this was about 7-8 years ago, and he said he thinks in my case I had the pulsatile tinnitus due to how retracted my eardrums were as they must have been sucked in closer to a blood vessel/artery, and hence it being better since my eardrums got rebuilt (until this recent week) as the scan didn't reveal anything else at the time.

I did have a CT scan again, with dye, last October to investigate pulsatile tinnitus again, as I had noticed it creeping back a little then, but nothing to the crazy extent it has been the past week. I'm still awaiting results of this due to COVID-19, but I am currently trying to contact my specialist that requested the scan to discuss what's happening.

So, in short, I was wondering if anyone knows why the whooshing could suddenly get really intense?

My worst moment was when lying in bed one night, it got super super intense for hours. But I also have random intense whooshing/roaring spikes when sipping water or slightly moving sometimes, too.

Any ideas why sipping water could make the whooshing intense? I'm just trying to figure out what is causing this, as like I say, I have had pulsatile tinnitus for many years now, and it is always there but, since my surgeries, usually very faint, and even now it can have fainter moments but then suddenly goes crazy.

Thanks so much if anyone can advise me on anything and thank you for reading.

 

My tinnitus also spikes when I drink water too fast. It's intermittent, though, so usually I don't hear it at all but occasionally do (once every few weeks or months) when I drink water quickly or sometimes just randomly. I can also sometimes trigger it by doing the valsalva maneuver.

My doctor says the most likely cause is that it's caused by a patulous eustachian tube like you because my dad also has eustachian tube issues.

I hope things get better for you and that you find out the cause.

 

Check your iron/hemoglobin levels.

 

Thanks so much for both of your replies, I really appreciate them!

I am going to hopefully have a blood test soon to check for iron and hopefully figure out why this has got so intense after years of being mild.

Thanks guys Hope you are well.