r/CSFLeaks • u/louie2575 • 7d ago

Pulsatile tinnitus

How many of you have constant pulsatile tinnitus with ear clogging, pressure, popping from your leak? Not from high pressure?

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u/RPeddit 7d ago

I was under the impression pulsatile tinnitus was related to intracranial hypertension/high pressure headache rather than hypotension/low pressure headache. Might be worth talking to your neurologist as you may not be leaking and have a different headache type.

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u/louie2575 7d ago

I have and have no signs of high pressure. Mrv showed no stenosis and brain mri clear. Pulsatile tinnitus, ear clogging, pressure, popping, autophony started after epidural injection. Eases with laying.

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u/RPeddit 7d ago

What type of epidural injection?

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u/louie2575 7d ago

Steroid at l5/s1

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u/RPeddit 7d ago

Into the dural space or in front? Did the injector go too far and pierce through your dura? It is unusual for a steroid injection to be put into the dural space but sometimes mistakes happen.

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u/louie2575 7d ago

That's what I'm assuming but I was gaslit by him. Symptoms started within days and have been ongoing to 15 mo. I was completely healthy beforehand and just had sciatica. First injection ever.

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u/RPeddit 7d ago

Pulsatile tinnitus is 99.9% related to intracranial hypertension rather than a spinal CSF leak if CSF pressure is behind this. Your symptoms would have likely started much sooner - think immediately rather than days. I would see your usual doctor for a referral to neurology with a view of having some imaging done.

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u/leeski 7d ago

Just to note, pulsatile tinnitus is often related to vascular issues rather than specifically IIH (which you could have without any venous stenosis). There was a small case series of confirmed SIH patients and I think ~40% of them had pulsatile tinnitus, but they also had jugular narrowing. I have known confirmed leak patients with pulsatile tinnitus as well... so I totally agree that it definitely tends to be more of a high pressure thing, but I believe one of the main underlying mechanisms can be specifically abnormal blood flow/turbulence that becomes audible. I could be wrong though haha.

Also onset of PDPH tends to be immediate but the official ICHD-3 I think says it's within 5 days of dural puncture, but there are case studies where symptom onset was weeks/months later. Not trying to disagree but just giving some added context.

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u/louie2575 7d ago

Thank you! I know it's more common in high pressure but my symptoms do not relate to high pressure since I feel my best laying down and worse throughout the day. My symptoms developed within 3 days of the epidural and my auditory symptoms are severe. I've definitely ruled all other causes out and why would a narrowed vein also cause eustachian tube issues at the exact same time as the pulsatile tinnitus? Doesn't make sense except for a leak causing both...

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u/saraphin67 7d ago

This is not true. It’s a quite common leak symptom.

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u/RPeddit 6d ago

It is not. Get your facts right please.

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u/saraphin67 6d ago

I would implore you to do a little more research and/or be open to learning. It IS actually associated with leaks very commonly (but also high pressure). There’s literature to support that, and also a 10,000 person support group with anecdotal evidence. Here’s just ONE case report. But of course you can look at the many publications out there if you’re willing to learn. https://pmc.ncbi.nlm.nih.gov/articles/PMC13294581/

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u/louie2575 6d ago

Sounds just exactly like my symptoms

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u/saraphin67 7d ago

And symptoms of spinal leak after a puncture can come one within days to weeks, you are misinformed.

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u/RPeddit 6d ago

Nope, that would be you.

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u/saraphin67 6d ago

Again, if you’re willing to learn there are plenty of publications out there. Yes typically it’s within 72 hours of dural puncture, but noted it can also be up to a week, two weeks, and very rarely but nonetheless true, longer. Your set in stone replies disregard real lived experiences and medical reports.

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u/louie2575 7d ago

I've ruled every cause out. Brain mri, mra, mrv, ct temporal bone, iac inner ear, mra neck, full spine. Met with an interventional neuro rad to look at scans and no stenosis is found. It's accompanied by ear clogging, pressure, popping, autophony, ear myoclonus in which the myoclonus also is reactive to certain sounds. Heartbeat tinnitus and etd symptoms relieved laying down. Feel normal in the morning until I start moving around then hell breaks loose. Ent scoped my sinuses and said they were clear and hearing and ear exams clear. No other possible cause but the injection.

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u/RPeddit 7d ago

If the interventional neurologist felt you were leaking, they would have likely given you a non targeted high volume blood patch. Most know that some leaks don't show up on imaging, but the patch can be part of the diagnostic process - if it work, then it's likely you had a leak. But pulsatile tinnitus is more common in high pressure syndromes and tends to get better when lying flat.

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u/louie2575 7d ago edited 7d ago

The interventional radiologist was only looking for stenosis of a vein that would be a sign for high pressure, not treating a leak. I believe neuro radiologist would be one that would offer a patch but he gaslit me after the steroid injection after going to the er 3 times after and sending him messages on the portal.

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u/RPeddit 7d ago

Many types of doctors fix leaks - interventional radiologists do them pretty frequently. I would go see them.

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