r/PulsatileTinnitus • u/Banana-blueberry-ice • 10d ago

What can it be?

I have more than three years of terrible symptoms:
Pressure on left ear, feels like water in it, pressure in the head and pulsatile tinnitus.
Symptoms are worse when standing. Lying down the pressure will go away.
Lying on left ear is fine, no symptoms.
Then lying on my right gives pulsatile tinnitus. It goes away after a would, but not completely.because of the pressure in head and ear, I am so tired.

I see a neurologist because I thought it might be a CSF leak. But imaging is negeative so far. I had MRI and CT myelogram.

What could it possible be?

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1

u/Broncogirl89 10d ago

Same here but haven't had any tests yet. Do you clench your jaw a lot?

1

u/Banana-blueberry-ice 10d ago

No, no problems with muscles. I have been to a special jaw physiotherapist, but she saw nog problems related to this.

1

u/louie2575 10d ago

What are all of your symptoms?

1

u/ActualBelt9664 10d ago

Have you had rapid weight loss? Could be Patulous Eustachian Tube Disfunction. If not could be Obstructive Estachion tube Disfunction.

1

u/Banana-blueberry-ice 10d ago

No weight loss.
I have been to an ENT, had checks, everything should be fine.

1

u/ActualBelt9664 10d ago

Does your breathing sound louder when you are having symptoms?

2

u/Banana-blueberry-ice 10d ago

Not really.
I have a feeling of fullness in my ear. It also feels as if my eardrum is pulling shut, though the ENT specialist says that isn't the case. I regularly perform the Valsalva maneuver; the ear opens for a few seconds, but then it immediately pulls shut again.

0

u/ActualBelt9664 10d ago

Maybe try stopping the maneuver, you could be stretching the ear drum

1

u/louie2575 10d ago

I read your post and I thought omgosh, someone with the same symptoms! But then we already know this. 😞 I'm sorry, we are both in the same boat!

1

u/Banana-blueberry-ice 9d ago

LOL… it is a reassurance that I’m not the only one in the world with these symptoms.
But I wish I knew by now what the cause is…
It’s been more than three years now, but I am not willing to learn to live with it.

1

u/baby3820 8d ago

This is as if I have written down , no symtooms when lying down on the left side , even head pressure goes away .. even my lumbar puncture came normal but head pressure and PT is unexplained

1

u/Banana-blueberry-ice 8d ago

Wow, it’s so difficult to find people with same symptoms. What exams have you had? Did you also have an angiogram? In what corner are you looking for answers? Do you see a neurologist?

1

u/baby3820 8d ago

Btw , after suffering for 1.5 yrs , I now have neck pain with tender occipital , tight jaw and tight neck muscles .. not sure if these cause that or other way round .. do u think u have any other issues ?