Not Sure What to Do... New to Pulsatile Tinnitus

[Betsy]

Hello... I have been scouring the internet for info on this, I hope I don't sound too crazy...

I started feeling a fullness in my ear a week ago, along with some occasional autophony and pulsing, as well as jarring sensations when I would move, walk, cough, etc. Went to the doc who said my ear looked fine but was concerned about the symptoms w/no visible cause, so he referred me to an ENT/neurotologist.

For the days leading to that appt it remained intermittent, but once the pressure sensation returned, so did the pulsing, and it was worse w/activity. On the day of the ENT appt a hearing test showed some minor hearing deficit in that side compared to the right, and the dr who performed it said it showed there was something definitely going on in the ear. But when the main doc came in, he said my hearing was 'perfect' and started to reluctantly talk about vascular studies. However, once he found that the pressure sensation was there and the pulsing coincided with it, he immediately decided to dx me with Patulous Eustachian tube. He never looked in my ear, and gave me some Nasonex to try if it flared up again, come back in 4 weeks. Also, I should try to put my head between my knees if the pressure and pulsing got bad again.

So the next morning (Sat.) it started to ramp up and I did what he said, sat down on the couch and put my head down for 30 seconds. Boom... pulsing started up nice and loud and hasn't stopped since.

The original autophony is gone, I have tested making noises while 'yawning' and I can only hear a loud voice in my Right ear, not the pulsing left one. I don't hear myself swallowing or breathing in the left ear like I do the right. Just the pulsing. I do not believe it is PET. Called the ENT this am to explain the changes b/c I think it should be investigated and he said to just keep trying the Nasonex. Oh yeah, I also have ringing in that ear as well now, too.

That whole side of my head feels weird, almost like some of my sensation is decreased. I think it's starting to ache but that could just be from thinking/focusing on it too much.

The pulse sound isn't so much of a whoosh, but more of a gallop, like listening to a fetal heart on doppler. Pressing on my neck doesn't eliminate it but plugging my ear firmly does help.

Any ideas? Is this likely PET and I'm just crazy?

 

[Karen]

Hi, Betsy,

I'm a fellow pulsatile tinnitus sufferer; I've had it for a little over 3 years now. When mine first began, it was pretty bad, and it came with pressure in the ear, as well. I also have ringing/hissing in the affected ear (the right ear).

When mine first started, I went to an ENT. The ENT checked my ears, and I had an audiogram. Then, since he didn't know what to do about my pulsatile tinnitus symptoms, I was sent to a neurotologist. The neurotologist checked me, and also prescribed a course of steroids, Nasonex, plus a saline nose wash. I tried all of that, but it did not help. The neurotologist did say he thought I had conductive hearing loss, and suggested stapedectomy surgery (for the hearing loss, not the PT). He also sent me for a CT scan, which came back negative. Since then, I've been to other doctors, but so far, no one has been able to find a cause.

In your case, I would say that your instincts are probably correct. Does your ear pulsate in sync with your pulse? You can check it by listening to it, and counting the beats, then checking your pulse using a blood pressure monitor. If it is in sync, then it is most likely pulsatile tinnitus, as opposed to PET, which is more random, less regular.

If you are not satisfied with the doctor you went to, you could try another doctor --- another neurotologist, a neurologist, or a vascular surgeon. Are you anywhere near a teaching hospital/university? I've heard that some of the best doctors who know about pulsatile tinnitus (PT) are located at teaching hospitals. You may want to check out whooshers.com, if you haven't already, to read about possible causes of PT and "cured whooshers".

Mine is like yours; it sounds more like a drum beat and less like a whoosh.

In my case, the pulsatile tinnitus has calmed down since it began. It was pretty close to a 10 (on a scale of 1 - 10) back then, and it's probably a 4 right now. There are many possible causes for PT, and it's worth going to get another opinion to rule out any possible physical causes.

Good luck, and I hope you'll keep us posted on how you're doing!

Best wishes,
Karen

 

[Betsy]

Thank-you for your reply, Karen. Yes, the sound is definitely my heartbeat. It's kind of funny b/c I'm taking my bp w/a machine at home and I can hear the beeping of my pulse on the machine and when it stops beeping I start estimating the number it will show me... the other day it stopped inflating and I thought 'What? It hasn't stopped beeping yet!' and then realized I was hearing the pulse in my ear, not the beep of the machine LOL.

It is much louder with activity and increased bp. I was able to sleep pretty well last night with almost no sound unless I concentrated (minus the nasty ringing that's started and getting worse)... but the hb in my ear was almost undetectable. Thank goodness for the small things. Of course now that I'm up and moving around it's back to its tricks.

The one thing that does make me still wonder if I'm wrong about the PET is the fact that other motions are felt/heard inside, like when I walk or move my head too quickly. But it seems to me more like a something being shaken, not the actual sound of muscles, body movment, etc. I can create the same sound if I press on my neck. It's weird. Also, when I move, no matter which way being it bending over, turning my head, etc. the pounding is diminished for a moment, but comes right back, almost as if the little guy in my ear who is playing the bongo got disoriented for a second... but only a second

I did call my PCP yesterday and she almost sent me for a stat MRA but decided to go w/another ENT first instead. Ironically, the one I saw on Friday is a neurotologist, the only one for several counties supposedly. Lot of good that did me, I will try to call the new office today and see if they can get me in soon, but it's not likely with Thanksgiving 2 days away.

At least it's not as loud as it was yesterday morning... keeping my fingers crossed. I have so much to do!

Have a great day

 

[Karen]

Betsy,
It will be interesting to see what the new ENT has to say about your symptoms. It does seem to be pulsatile tinnitus, but it's hard to tell without a full examination. I wonder if he will suggest an MRI/MRA --- that's what I had.

Mine doesn't change when I press on my neck; some people, like you, do notice a change. For quite awhile, when I moved my head quickly or did anything, like lift something heavy, etc., I could hear an increase in my pulsating. It seems much better now, and I'm keeping my fingers crossed that it stays this way! I think mine is blood-pressure related, because it was blood pressure meds that started mine in the first place. Now, my BP is under control, and I am taking a natural supplement, called Carditone, which seems to be helping both my BP and my PT!

Good luck at the ENT's, whenever you get a chance to go, and I'll be interested to hear what he says.

Have a wonderful Thanksgiving!

Karen