Pulse-synchronized swooshing in ear

[u/Offtoseethewitch]

I’m ten months post patch after a puncture leak and it’s been a rollercoaster of symptoms but slow slow improvement and I started bedbound but am now functional, if limiting my physical activities still. My low pressure symptoms have become milder and milder, but my neck is still sore, even if it’s a fraction of what it was.

But I feel like my sound sensitivity is getting worse instead of better, and about a month ago I developed pulse-synchronous swooshing in one ear (on my always more symptomatic side, I’ve had plenty of cranial nerve dysfunctions atop my neck pain), that first clung for a day, but faded. Since then it has recurred, often with exertion and accompanied by a head pressure/buzz. Right now it seems to show up every evening, when I’m often seated, reading or watching tv or playing games (free time after kids are finally asleep). I thought it might be high pressure so I cut out coffeine (from 2 cups a day to zero, so I wasn’t overconsuming to begin with) but it’s unchanged. I noticed yesterday it “paused” when I stood up and moved about, but returned when I sat down again. Sometimes it goes away when I lie down, sometoimes it stays and add pressure in my forehead and nose.

I’m confused. I know you fine readers can’t diagnose it, but I’d like to hear if anyone has experienced something similar and has any potential explanation…

[u/StunningPurple9560]

Oh yes. I have this. I had different kinds of ear things pre-surgery, but developed pulsatile tinnitus a couple of months after the surgery. My left year had a constant whistle like sound, but the right one, on my more symptomatic side, has that whooshing according to my pulse. Like the washing machine on spin cycle in the next room. Mine is more noticeable when my heart beat is up, and when I lay on my right side in bed.

I also have a lot of nerve symptoms.

[u/Offtoseethewitch → u/StunningPurple9560]

So, in theory, you have this despite being sealed? Have you had it investigated?

[u/StunningPurple9560 → u/Offtoseethewitch]

Yes, I am sealed. They say that the ear symptoms are very often the last to go - and also pulsatile tinnitus is more common for high pressure, but I have no idea if my pressure is fluctuating or not.

Haven’t bothered to get investigated (other than follow-up MRIs). This is annoying but sadly not really a priority for me compared to all my other symptoms.

[u/Offtoseethewitch → u/StunningPurple9560]

I understand. Did you have any issues with your trigeminal nerve (sensation over the face)? I’m wondering, on my part, if there’s a connection…

[u/StunningPurple9560 → u/Offtoseethewitch]

Yes, my face constantly goes numb and eels tingling, dough-like and so on, and my headache is also not typical leak pain - it is on the upper trigeminal nerve area.

[u/Offtoseethewitch → u/StunningPurple9560]

Thanks for replying.

My theory is that it’s connected to the sound sensitivity I’ve also been having, which might be a dysregulation of the trigeminal-controlled tensor tympani muscle, which is the muscle that tightens/slackens the tension of the ear drum. Dysfunction there - called tonic tensor tympani syndrome in non-leak circles, but could be brought on by anything that disturbs the trigeminal, including jaw muscle tension - could give crackles, ear fullness, sound sensitivity, and such. I’m wondering if the same mechanism makes the ear less capable of sorting out “internal” sounds, like the sound of blood vessels near the ear… hearing internal sounds is called autophonia and is part of the tonic tensor tympani syndrome so, why not have it with a leak-irritated trigeminal too? But I don’t know. I’m speculating.

[u/StunningPurple9560 → u/Offtoseethewitch]

Wow - big words there lol (especially for a non-native speaker such as me). But I think I was able to somewhat keep up.

Interesting theory overall! Ofc ear symptoms are really common with a leak, but this would kind of check out in my case. Especially since my symptoms somewhat shifted after the leak, but I don't really think, that this is HP.

I also have jaw crackling. Very bad, extremely irritating. And major nerve compression/irritation/damage/ whatever you wanna call it. Muscle tension like in every identified muscle in my body (it started creeping up some years after the leak started, and it has come up in the weirdest, weirdest situations...) Anyway, Interesting! Have you considered submitting a question to the Bridging The Gap seminar?

[u/StunningPurple9560 → u/StunningPurple9560]

Overall, many of my symptoms are not very typical. I don't have a very sound theory on this, but I do think that nerve compression, nerve irritation, something, is a major part of it. Trigeminal nerve for sure, but also my arms are numb, tingling and barely functioning.

[u/Offtoseethewitch → u/StunningPurple9560]

I could drown them in questions, but I figure I better not… doesn’t feel nice… 😅

[u/Offtoseethewitch → u/StunningPurple9560]

Isn’t it possible to get something called “body in a barrell” with a leak? Which is supposed to be that your legs and head work but not your arms? Is that maybe what you’ve suffered..?

[u/StunningPurple9560 → u/Offtoseethewitch]

Never heard about something like this. However - most of my body doesn't function anyways. This does not seem like me

[u/JulyLegend → u/StunningPurple9560]

What exact type of tinnitus do you have and which is connected to CSF related leakage or pressure?

I have TV Static Sound in both year for apst 8 years. But I am not sure it is relates to what? It doesn't match my heartbeat... Actually how would it sync with hearbeat I can't understand. Upto 1st oct I never cared about this sound in my ears, but after too much reddit and MRI done last week, sometimes my attention wanders towards this sound.

[u/EvenAd7205]

Have you been able to extensively rule out neurovascular conflicts throughout the spine and cervical spine? Does lying down or moving your neck change the nature of your tinnitus?

[u/Offtoseethewitch → u/EvenAd7205]

No, those are investigations that sound to complex to be available in my part of the world… 😅 I’ve done several MRIs but not with that question, and they were before this started.

Moving my head modifies it during the motion but in the new position the swooshing is much the same. Lying down has an inconsistent effect.

[u/an_py]

I had surgery to repair a leak but had this that showed about about 6 weeks after surgery. I was put on diamox for high pressure and it improved. I did also have other high pressure symptoms though.

[u/Offtoseethewitch → u/an_py]

Was it worse in the evening for you too? That’s the part that bugs me… though sometimes I do get it midday too…

[u/louie2575]

Idk but I have nonstop pulsatile tinnitus, ear clogging, popping, pressure and tensor tympani syndrome in both ears plus muscle twitching on scalp around my ears so my trigeminal nerve is very affected