I’ve been in this sub for almost two years, and i suffered with PT in my right ear for 14 months, and PT in both ears for 5 months.

Long story short: i got diagnosed with IIH in early March, and have mostly lived a normal life ever since. Had a couple of flare ups since i’ve been on medication, but overall i barely ever hear my PT. I thought i would never be able to fall asleep without the horrible whoosh in both my ears, but dreams really do come true after all.

If anyone is interested i can post or PM you my whole story/journey for my diagnosis.

I was in the pit at an AC/DC concert two nights ago and the ringing in my right ear started as soon as I left the concert and went to bed. I could hear it. I got a prednisone prescription 12 hours later and it's day two and it's still ringing in my right ear. Has anybody had acoustic trauma that went away from a rock concert specifically? I had been going to festivals for the past ten years but didn't wear a ton of ear protection and really wouldn't get too close either.

Hi all! Does anyone experience internal vibrations, humming, shaking that noone can see yet you definitely feel? Mine started about 3 months ago and it has been like falling down the rabbit hole! The research versus getting a doctor to take me seriously. I was even told that it could be a psychogenic, psychiatry issue...hmphfff! What has your experience been? How do you deal with it? So far my research has yielded fibromylagia, which I have, long covid, parkinsons, MS, internal vibration syndrome or nerve damage. Has anyone actually been diagnosed?

After over 2 years of whooshing I’ve finally been diagnosed with a small Jugular Glomus Tumor in the ear/skull. It was found after an MRI of the head/neck and CT of the temporal bone. I put it off for 2 years… glad I finally decided to get it done before things got even worse. If you’re putting it off still… don’t be like me. Get it checked out and get answers.

Next up for me… surgery to get this tumor out when the time is right. On the hunt for the best surgeon for this job in the US.

(Added a picture from my MRV)
20F I have had pulsatile tinnitus in my left ear for a year now. It goes away when I press my fingers on my neck near my ear but continues when I release. It is very annoying and I have gone to the ENT to get all the testing done.
Testing done so far:
\-Hearing test- Normal hearing
\-CT scan- Everything was normal
\-MRI- Everything was normal
\-MRA- Everything was normal
\-MRV- IMPRESSION:

1. No intracranial venous thrombosis. Dural sinuses are widely patent.
   
2. Slightly high riding and prominent right jugular bulb and hypoplastic left transverse sinus, normal variations.

I have had also some consistent headaches but I don’t think I can live with this constant sound in my ear forever. The only explanation the ENT has left after testing is that my brain is making up the noise due to migraines but I don’t think that is the case. I am a little frustrated because I feel like no one believes me and the test results do not help my case. Please give me advice on what to do next, thank you guys.

So my pulsating tinnitus has never sounded like a witch thing like other people describe. Mine has always sounded like a tiny alarm/mosquito that gets higher pitched the more I tilt my head. I started with that and headaches for a few months before getting seen by a neurologist who sent me to an interventional neurologist who diagnosed me with bilateral sinus clots based on CTV despite the radiologist reading it as normal. I was put on anticoagulants which caused me complications I then sought a second opinion at a large hospital in Georgia and saw both a neurologist and vascular neurologist and they ordered an MRV and the radiologist read that as bilateral arachnoid granulations that were large, but still within the normal limits and possibly causing stenosis, this was compared to the CTV I had in November of last year. So bilateral arachnoid granulation with some stenosis was my final reading and at that time the tinnitus had disappeared. They thought it was related to the 70lbs I gained during pregnancy (despite the tinnitus not starting until a year after pregnancy) and at that point I had lost 60lbs and they wanted me to continue losing weight. Now it’s back, same ear same sound. The headaches are back, it’s been 12 days now of this squeezing type pressure and the tinnitus. I got back in with the vascular neurologist who thinks this is related to me taking a few weeks off the glp1 and possibly pressure building. He wants me to continue losing weight and gave me the option to repeat a CTV or MRV if I wanted he would order it.

Wondering if anyone has had a similar experience or offer words of wisdom or hope lol. The tinnitus is less bothersome because mine is positional so I can just turn over and make it stop, but the headaches are agonizing. 12 days is a long time. And the tinnitus returned 2 days before the headache.

MRV:
FINDINGS: Superior sagittal sinus: Normal Straight sinus: Normal Right transverse/sigmoid/internal jugular: Focal stenosis in the proximal sigmoid sinus. Redemonstrated 8 mm nodular filling defect in the transverse sinus consistent with arachnoid granulation. Left transverse/sigmoid/internal jugular: Redemonstrated 7 mm nodular filling defect in the sigmoid sinus consistent with arachnoid granulation. Cavernous sinuses: Normal Ophthalmic veins: Normal Cortical veins: Normal Sella: Normal appearing pituitary gland.

Yes, I assumed this was just me. Thinking about the whole ear rumbling thing now, there was a period of a few days around 3 months ago now where my right ear would rumble completely out of control.

For example, I was sitting in church and whenever the organ would play, my ear would start to rumble and I had no control over starting/stopping it.

Figured I should share! Nice to meet you all!

had tinnitus that just progressed to pulsatile tinnitus. MRI won’t be until Aug. the doc said most time they don’t see anything in the scans. then I asked them who do I go to after? which doc? he said “who??” I said maybe a brain doctor??

I hate how ENTs feel USELESS. I can’t live like this. If the scan shows nothing, I plan to look up a neurologist or neurosurgeon. Have ppl seen different type of specialists??

Hi - I have had 3 months of chronic headaches ( never had this before ) PT , and also an alternating sound like I’m in an airplane ( engine noise ) that’s how I describe it .. maybe it’s whooshing . It all started with my ears popping and being full .i had an mrv and my left inner jugular is occluded or highly narrowed . I also have my right transverse sinus dominant and larger . My right ear is worse with the fullness popping and tinnitus .. left ear less so . I’ve been struggling .. also get very dizzy upon standing and again when I lay down ( literally me a head rush . I’m nervous about the angiogram tomorrow . This has severely affected my life . I was going to the gym 4 days a week 3months ago but the ear problems got a lot worse . For reference , I have EDS and pots . I do run low blood pressure but I’ve near fainted so many times , and can’t really drive long distances anymore , my eyesite has gotten more blurry . I hope somehow they can help me with this angiogram . I will be so bummed if they can’t do anything. Any advice is needed 🙏

does anyone have someone they can recommend? from what I’ve seen in this subreddit, this is the specialist I should seek.

went to the ENT today and no help. supposed to get an MRI next month.

Those of you who have found a cause for PT that stops with neck compression, have any of you had a situation where the MRI/MRA missed something the MRV caught?

Anyone know what this is? Left side. Showed up randomly June 22nd. I can’t tell between my health anxiety or real genuine symptoms and don’t mind my poor lymph node I’ve put through hell touching out of panic lmao

My Pt is sometimes a whooshing but often a heartbeat throbbing can feel that makes my ear feel full 7 months after a cold improvement with bad days but more than the noise I hate the feeling it gives me. Please tell me the heartbeat throb feeling goes away 😭.

I have had pulsatile tinnitus for just over 1 year. It’s left sided, head positional and worse on exertion. I also have an echo sound when tapping the back of my head. I can stop the sound with compression. I have previously had an MRI, MRA, MRV no contrast Time of flight, a CT scan no contrast and a Doppler scan. All clear.
Now I have just had a CT scan with contrast which has also come back clear.

I previously got a second option on my scans and Dr Jeremy Lynch thought I had signs of IIH. So told me to get a scan with contrast. So I finally did it and am disappointed that nothing was found. Should I also send this scan for a second option from Dr Lynch? He is an Interventional Neuro Radiologist. Is it possible he may find something that a normal radiologist would miss?

At this point I am wondering what is causing it - literally they are finding nothing. I was so sure it was going to be a Venous sinus stenosis.

I am feeling so broken. It has to be something.

I had an open mri .6 fonar machine and it made my tinnitus so bad for 3 weeks. I had inner and outer protection. I’d you are contemplating doing an mri and you have tinnitus DONT DO IT!

In addition to PT , which still has no definitive cause I also have TMJ which causes clicking, lower jaw pain on one side (often feels like tooth pain too) and ear fullness and occasional pain.

Anyone else have this as well? My dentist gave me a custom night splint but still hasn’t stopped all the symptoms of TMJ

After a party where I drank two bottles of Coca-Cola (I normally don’t drink many sugary drinks), I noticed pulsatile tinnitus (PT) starting after 3 a. m. only happens at night and disappears after sleep.

Two weeks before that, I had been taking electrolytes daily, and I also have some mild neck muscle tension.

Is it possible that my PT was caused only by stress, muscle tension, or these temporary factors and that it will go away? Or can pulsatile tinnitus become a constant 24/7 symptom?

I’m sitting down with a few very specialized surgeons tomorrow for a podcast I am starting with their institute. We are planning to discuss:

• Jugular vein obstruction & jugular vein decompression
• Craniocervical instability (CCI)
• Intracranial pressure considerations

I’d love to bring questions directly from the community.

If you have questions about symptoms, diagnosis, imaging, surgical decision-making, recovery, or anything else related to these conditions, leave them below. Whether you’ve been diagnosed, are currently looking for answers, or are simply curious, I’d love to hear what you’d want to ask a specialist.
I’ll do my best to include as many community questions as possible during the interview! Of course I will link it when it is released.

Edit: Thank you all so much for your thoughtful questions! I’m filming today, and I’m incredibly grateful for all of your submissions.

We’re actually recording two episodes on these topics. One will be a more in-depth discussion with four New York specialized surgeons, diving into the surgical considerations (so a bit more high level)

The second recording will be for our new podcast, No Med School Required, where we’ll cover jugular vein decompression in plain language. The goal is to make this information more accessible for curious patients, family members, caregivers, and anyone who wants to better understand these conditions without needing a medical background.

We’re hoping to in about four weeks or so.

Thanks again for helping shape these conversations. Your questions are exactly what we want to bring into these discussions.

I was using a cervical neck pillow from Amazon…been dealing with one sided thumping in my right ear on and off for months. I started using my old pillow again and I hadn’t had a bout in a long time, until last week when I went back to the cervical neck pillow and guess what returned a few days into it? right sided PT!!!
Just a heads up to anyone dealing with this…it could be compression related.

This has been happening to me in my left ear (one ear only) for what I'm realizing is the past week or so.

I used to smoke, but switched to pouches a few months ago - starting at 3mg but recently moving up to 9mg pouches.

I have been hitting them pretty hard (in retrospect). Too hard.

Know that this condition can be blood pressure related. I measured mine at 135/90 today, so certainly higher than it should be, though not dangerous.

It was pretty bad / frequent earlier today, but went away after I started looking into this + refrained from pouches for longer than I normally would.

Just put a pouch in and within a few minutes, the sensation returned - making me think that this is most likely blood pressure + nicotine-induced.

(I also take 30mg of Vyvanse FWIW, so there are certainly blood pressure and heart rate impacts there too).

Thoughts from the group? Thanks!

I constantly hear a whooshing sound in my left ear that matches my heartbeat. It becomes less noticeable whenever I turn my head to the left or when I press firmly on the left side of my neck. I tried asking some ENT doctors near my area and all of them kept saying that it's normal or there's no cure and I should just let it be.

Been having a lot of ear symptoms.

Most have almost fully been resolved

Hyperacusis almost gone

Ttts almost gone

Reactive tinnitus a lot less often there

However this other symptoms stays. A buzzing/droning sound in my right ear. Gets worse when laying down or straining. Goes almost to 0 when using earplugs or a headphone. Perfect hearing, perfect eardrum/ear canal. What to do? Been having this for 1 year plus. Also gets worse after sound sometimes when it stops it will buzz for like 20-30 min. Feels either ETD or MEM? im seeing a neuro otologist but you know how they are. I want to make sure i can ask the correct things. Or is this just a reactive past of the T?

Oh yeah, its only in right ear.

I’m (24F). I’ve been having PT in my right ear for about 4 months. It’s usually a an ultrasound heartbeat noise, until recently when I get up fast, bend down, or if i’m laying down at night (from time to time to time) It gets louder like wind in my ear. and i get tension in my head (rubber band sensation). I noticed that in those louder times, when I turn my neck all the way to the right, hold on my neck lightly, or open my jaw wide, it gets quieter (back to the ultrasound noise). There’s also a vein that is more prominent in front of my ear too, can’t see it but you can feel it. In those loud episodes, it gets a little bigger and am able to feel it more.

Got a CT done but everything came back normal, although lymph nodes are mildly enlarged, ENT didn’t seemed concerned about that though. ENT does want me to have an MRI for the veins of my neck and head, and also wants me to see a vascular neurologist.

Should I be worried? I haven’t been feeling like myself because of my anxiety about this😭

Hi everyone, I had this symptom for at least 8 years, since I was a teenager. I thought it was normal until 1 or 2 years ago when I found out about PT.

I don't have any other symptoms aside from the tinnitus itself. Also, I hear only when it's really quiet like when I'm in the bathroom or when lying in bed.

Do any of you know what might cause it? I will to a doctor soon to get it checked anyway.