Unknown Pulsating Tinnitus — Had Every Test

[egrayson]

Hello,

I'm a young male in his late twenties who's going on two years with PT. It's gotten worse throughout the time I've had it.
I've had many many tests (Several repeated MRI/MRAs, cerebral angiogram, carotid doppler etc). I've been to see several neurologists, ENTs and neurophysiologists. No one can figure out a cause. Every test is totally normal. Sometimes I'm able to just go on living my life and not think about it that much, but other times (like now) it's horrific. It litterly keeps me up and is very hard to live with. I also have a hard time believe there is nothing harmful causing it which makes it even harder. Any thoughts or advice would be greatly appreciated.

 

[Chilly]

The science is still incomplete as your can see . It can't figure out everything.
Playing White noise can help
Also, meditation
Train yourself to focus on the things you are doing and ignore distractions

 

[whale]

Hello,

I'm a young male in his late twenties who's going on two years with PT. It's gotten worse throughout the time I've had it.
I've had many many tests (Several repeated MRI/MRAs, cerebral angiogram, carotid doppler etc). I've been to see several neurologists, ENTs and neurophysiologists. No one can figure out a cause. Every test is totally normal. Sometimes I'm able to just go on living my life and not think about it that much, but other times (like now) it's horrific. It litterly keeps me up and is very hard to live with. I also have a hard time believe there is nothing harmful causing it which makes it even harder. Any thoughts or advice would be greatly appreciated.

go to a neuromuscular dentist to check your jaw or TMJ.

 

[dizzyear]

Hi egrayson,

There is additional condition you should test for called Superior Canal Dehiscence (SCDS). The test for this is a high resolution CT scan of the temporal bone normally orderd by an ENT. This is a fairly rare condition but is one of the potential causes of pulsatile tinnitus. I happen to have this condition, but not the pulsatile tinnitus symptom. Do you have any other symtpoms? Like, Hear your own voice more loudly in one of your ears, sensitive to specific loud sounds, any dizziness, in a quiet room can you hear your own heartbeat or noise when you move your eyes? Any feeling of fullness in the affected ear. I know, a bunch of strange questions. SCDS has a fairly strange set of potential symptoms.

 

[Karen]

Hi, @egrayson,

So sorry you're experiencing pulsatile tinnitus, and at such a young age. I too have PT, and have had the same tests as you've had, and made the rounds of a lot of doctors and specialists. My cause hasn't been found, either, but in my case, it started immediately after taking a blood pressure drug six years ago, so I feel there is a connection there. Also, I've been told I also have conductive hearing loss in the same ear.

In your case, it might be good to try sending your scans to another doctor or specialist. I've heard good things about a new clinic that has recently opened in San Francisco, that actually specializes in working with pulsatile tinnitus patients. You could try contacting that clinic, then sending your scans to them, to see if they can diagnose anything unusual.

Here is a link: http://pulsatiletinnitus.ucsf.edu/

Do you have PT in one ear, or both? And can you silence it briefly by pushing on the carotid artery in your neck?
Do you also have regular tinnitus in the same ear or ears?

Take care, and please keep us posted on how you're doing.

Karen

 

[egrayson]

Hi Karen,

Thanks for your helpful insight. I have actually had my scans looks over by many different doctors, but another look can't hurt. I will certainly reach out to that clinic. I have PT only in my left ear only, there is nothing I can do to silence it. It's a totally mystery and is so frustrating. I don't have regular tinnitus.

 

[Karen]

@egrayson

Your PT sounds a lot like mine. I cannot silence mine by pressing on my neck, either. There are a lot of PT sufferers who say that pressing on the neck silences it briefly. There are so many possible causes for PT that it's hard to say what could be causing it. Are you familiar with Whooshers.com, and have you read about some of the possible causes, and success stories?

I hope you are able to find some answers soon! Please do post again, and let us know how you're doing.

Very best wishes,
Karen