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!
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!
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