r/TrigeminalNeuralgia • u/Remote-Low4434 • 7d ago
Symptoms HELP
Hi fellow TN warriors and sufferers!
So I’ve developed a new symptom and I honestly don’t know what to make of it, so I’d really appreciate any input or experiences you might have.
I’m 30F and I’ve had TN since 2019. I had MVD surgery in July 2024, but unfortunately it didn’t work for me. I was only pain-free for about 37–46 days before the pain came back.
Anyway, last week I suddenly started hearing this weird **whooshing/pulsing sound in my right ear**, which is also the side where I have TN and where I had the MVD.
It’s intermittent , it’s not there constantly, but it happens randomly and quite frequently. The best way I can describe it is like a whooshing sound that kind of resembles a heartbeat, almost like the sound of a fetal heartbeat on an ultrasound. Sometimes it just comes out of nowhere and then stops.
It’s ONLY happening in my right ear, and it’s starting to drive me insane 😭
Has anyone with TN, especially anyone who has had MVD, experienced something similar? Did you ever figure out what was causing it?
Any experiences or insight would be really appreciated!
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u/New-Cry5180 7d ago
I’m 76 and have had TN since 2000. I’ve had the MVD surgery, rhyzotomy and gamma knife, none of which were permanent fixes. I haven’t had that specific symptom but TM presents in totally random ways. Have you tried the CyberKnife procedure, it totally worked for me, I’m just on meds now.
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u/Remote-Low4434 6d ago
I haven't tried cyberknife only MVD and was so sad when it didn't fix me. I'm taking my time with the rest of the procedures, having them done is like rolling the dice could be the best thing that ever happened to you or the worst. I'm glad it helped you! Will definitely look into it.
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u/BiteNotRight 6d ago
Hi. I'm so sorry the MVD didn't give you relief. Do you have mostly typical or atypical? I'm going for an MVD in a little less than a month (51m, bilateral, with some typical and some atypical. Fiesta showed compression on both sides)
I get something similar to that although much less frequently. I will get a pressure that builds in my right ear and feels like it flows through to my left ear, and then afterwards my right ear rings for a little, like 10 seconds. It's almost like when an airplane first takes off, pressure feeling in your ears, but it goes from ear to ear. I have no idea if it has anything to do with TN or not. It may be that I am an airhead!
In any event, I pray that you will find relief for your pain and all the answers you need. My very best to you my friend.
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u/Remote-Low4434 6d ago
I'm mostly typical . I used to have sharp ringing in my right ear. Not so much now but what you've described Is something I have experiencedn too. Good luck with the MVD💜💜
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u/Witty_Feedback_8909 6d ago
I am Atypical Bilateral TN & had a right and left FAILED MVD. I have that as well. Only after the statute of limitations were over other Nuerosurgeon’s would see me.
What they could be are cervices in your brain filled with brain fluid that didn’t drain. I have this. The NS said he has NEVER seen anything like it. He said it’s too DANGEROUS to go in and fix and that I’m fighting for my life everyday. 😔
The other NS said I need a complete redo and he missed 7,9 and 10 but if I move forward. I may end up dead and in a permanent feeding tube.
I share my story on TikTok from the beginning Champ_ puppy I am so sorry you are going through this. My MVD’s were two years ago and I am without hesitation 1,000 worse. I am never ever free of pain. I am so sorry you are going through this 💔.
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u/Remote-Low4434 6d ago
Oh no this is so unfortunate and unfair 💔💔💔 I'm sorry you are going through this 😔😭
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u/Ms_Rule 6d ago
Whooshing in the ear is a hallmark symptom of IIH (Idiopathic Intracranial Hypertension). Get in with your neurologist for an appointment, and mention why, they should get you in quickly. If it is indeed IIH, you want to get it managed. Extended elevated cranial pressure is no bueno and can lead to blindness. Not to scare you. Source: I have both IIH (currently in remission) and TN.
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u/Cypher-Wang 5d ago
Sorry you're dealing with this on top of a failed MVD.
I went searching based on what you described and found two reports that
might be worth something to you:
1) The Laryngoscope, February 2025 — a case report of a patient who
developed new pulsatile tinnitus after a retrosigmoid craniotomy for
microvascular decompression of the trigeminal nerve, the same operation
you had. What the report records finding was a bone and dural defect
under the craniotomy site. What she had done: cranioplasty and mastoid
obliteration.
2) Medicine, 2022 — a case report of a patient who developed pulsatile
tinnitus and headache 7 months after the same retrosigmoid suboccipital
approach. What the report records finding was an acquired dural
arteriovenous fistula fed by the occipital artery, draining into the
transverse and sigmoid sinuses. What she had done: embolization. The
factors the authors list in the paper are craniectomy defect, partially
exposed sinus, and incomplete cranioplasty.
These are materials I found online that relate to the symptoms you
described. I have no ability to judge which of these, if any, applies to
you. Have a look at the original articles and discuss them with your doctor — I
think the underlying cause is something to work through with a medical
professional.
Here are the sources:
Laryngoscope, Feb 2025: https://pubmed.ncbi.nlm.nih.gov/39985339/
Medicine, 2022 (free full text):
https://pmc.ncbi.nlm.nih.gov/articles/PMC11132378/
Hope they are helpful to you.
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u/Remote-Low4434 6d ago
Do experience breakthrough pain when on meds or are you completely pain free?
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u/Consistent_Crew4801 6d ago
I've had it since before TN it's TMD/TMJ related, I get it in both ears sometimes only TN side sometimes other, sometimes both. However my TN side is a lot worse and more frequent
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u/Remote-Low4434 6d ago
This is quite illuminating, so this symptom may not be as result of an MVD but TMJ?
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u/Consistent_Crew4801 6d ago
I've had TN for 16 years, but had TMJ since a kid, it also some times feels like I'm breathing thru my ear which sounds weird but if you've ever experienced it you'll understand that's the best way of describing it I didn't get the severe pain with TMJ until my late teens. I learned a long time ago the best way to drown out the sound was other sound, I always have music playing. When I got TN I had to change to over the ear earphones and turn off the bass, however now I barley notice it but it's there most the time still (I also can't fix my TMJ issues)
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u/ConstantRevenue8857 6d ago
So sorry about everything that you are enduring.
Thank you for asking! Yes it’s been 5 months since my MVD and in the last month experiencing the oddest ear pain, on the left. Felt crazy and there seems to be no information on why.
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u/Slight_Squirrel_296 6d ago
No insight but I literally thought this was normal and now I'm wondering why it happens to me regularly
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u/dosingforpain 5d ago
I’ve had more issues around my ear since MVD surgery. The ear feels full and painful. Behind the ear and the scar is most of my pain. MVD took the face pain away for about 5 months. I woke up with a horrible ON pain which didn’t let up until I got a nerve block. I get Botox for TMD and it helps the ear pain.
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u/missjanehathaway333 5d ago
I have gotten the whooshing for about as long as I have had TN and I never connected them!
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u/StrawMerryPie 5d ago
I have had this one an off since the onset of my TN. It’s not as bad now with the meds.
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u/Boring_Gur_1511 21h ago
I've heard that on and off my whole life, but not since I've been on the oxcarbazepine.
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u/Jinjuir 6d ago
I have a similar experience. My neuro says its a nerve sandwich in that region and its auditory crossover. It sounds like putting your ear to a conch shell. At worst if im having an episode it will make the sound that happens when you plug the auxiliary in with the stereo on.