New Pulsatile AND Typical Tinnitus, but My Pulsatile Tinnitus Seems Backwards...

I'm new to tinnitus, with both regular and pulsatile versions coming on together about 3 weeks ago. I had gone for a short run (rehabbing after ankle surgery 5 mos prior), and about an hour later my head felt stuffy and like my pulse was pounding in my head. I took my BP, but it was nice and low like usual (110/70), so it was still a mystery. Decongestants didn't help (and I didn't feel sick anyway), but after a few days the stuffy sensation and pulsing subsided.

A couple days later I watched a movie, so my head was tilted slightly upward at the screen for 1.5 hrs. I have some neck issues so tried to keep moving my head around and changing positions to minimize any stiffness, but the minute I got up the stuffiness and pulsing were back with a vengeance. There's also a high-pitched, constant whine, so it seems I developed BOTH pulsatile and regular tinnitus at the same time. Is that odd? I've read about some people who had one first, but mine came on together.

When I sit, I can hear both versions of my T, and my PT is synchronous with my pulse. When I stand up, it gets louder and the pulsing is faster as my pulse rises. But when I walk, the racket synchronizes to my steps instead of my pulse--I get a loud clanging sound with each footfall. You know the shower scene music from the movie Psycho? It kind of sounds like that. God forbid I try to run--it just gets faster and faster, becoming nearly continuous. Does that happen with PT, or is the footstep-synchronized ringing actually the regular T getting loud enough to mask the PT during activity? As soon as a stop moving the PT dominates again, in time with my pulse.

The strangest thing, though, is that my PT gets better, not worse, when I lie down. And if I'm sitting or standing and bend over forward, the pulsing stops as soon as my head gets lower than my heart. Then I raise my head and the pulsing immediately resumes. That seems opposite of everything I've read, where people say their PT is worse when they lie down or lean over. While I'm grateful that I can sleep (and really feel for all of you who struggle with this!), I really want to be able to go on long walks...and run. I was training for a marathon, but now can't imagine even running a lap. It also makes me worry that maybe it has something to do with my heart, so even if I could put up with the racket I'm afraid to until I know it's not dangerous... I know patulous Eustachian tube and superior semicircular canal dehiscence can have those head-position changes, but I don't have any of the hallmark symptoms like fullness, autophony, hearing my own breathing, vertigo, etc.

My MRI and MRA were both clear, so my ENT suggested all is well and I just get used to this. I don't think her exam was very complete though (she never even checked to see if she could hear the whooshing objectively), so I insisted on a referral. I should mention that I also have some numbness and tingling issues in my mouth and hand/arm, so have had lots of prior brain and spine scans (mostly clean). There's a mysterious lesion on my upper spinal cord (unchanged) that's likely responsible for the mouth numbness, but the arm things remains a mystery. I have a hearing test tomorrow (I have had high frequency sensorineural hearing loss in this ear since childhood, which has also been fairly constant over the years), and hopefully I can get in with the neurotologist soon. If anyone has any ideas about specific questions or tests that seem relevant to that follow up, I'd love to hear them!

 

Hello
I too have pulsatile Tinnitus & regular Tinnitus along with it, (at the same time)..I've had slight Tinnitus for many many years, saw an ear doctor then..who told me it was the little hairs or crystals in my inner ear that get out of place somehow......That was nothing like I have now..about 10 years ago I started getting the pulsatile kind(hearing blood rush through with each heartbeat) sometimes hearing & feeling my heart pound along with that..mostly in my right ear..24/7 (it never stops) for 10 years now It never stops.....sometimes louder than other times...wakes me up sometimes its so loud.. and I sometimes get another sound along with it.. a shrill noise or a thumping very fast..this on occasion has made me very nauseated to the point of throwing up..my stomach will start churning & hurting & can hurt all day into the night..then I will feel it coming on..the fast thumping will be the sign..It was about to get really bad...I'm not dizzy..but something is going on in my inner ear that makes me want to throw up..I did have a terrible episode about a year ago..where all of a sudden the room started spinning around me a 100 miles an hour & I couldn't walk or stand up..I didn't know what it was & my Husband called 911..by the time they arrived it subsided...I get a little dizzy sometimes but nothing like that since..I think this is all connected somehow, I've been to a ear specialist who told me nothing can be done... anyone have anything like this??

 

Well, I saw the neurotologist, and he basically said I just need to get used to this--that although it's strange to have a sudden onset of pulsatile tinnitus, regular tinnitus, autophony and hyperacusis, there doesn't seem to be any identifiable cause, so don't worry about it. Argh, I'm so frustrated. The brain MRI, MRA and CT were all normal, so I suppose that's good news--although I was really hoping for an explanation and potential shot at a cure. My hearing test showed high frequency sensorineural hearing loss, but that's been with me since childhood and doesn't seem to be any worse than before. My cervical spine MRI was also consistent with that done several years ago--no new lesions.

So everything is normal, despite everything feeling so abnormal. I'm a very active person, and the thought of dealing with all this pulsing and clanging every time I walk or run or hike makes me very sad, especially since I'm not supposed to use headphones to drown it out. At least I'm not alone in this. It's helpful to know others are out there dealing with similar issues, getting by and making the most of it. Best wishes to everyone!