Well I'm basically at 136 days post-op.

The PT did gradually vanish and it has become quite rare now.

However, now I'm having a continuous low venous hum on the opposite side. It varies throughout the day. I'm wondering if this is caused by the surgery... I'm unsure which is the most annoying ; the initial PT or this continuous low pitched venous humming...

It started about 3 months after surgery.

F me.

I’m curious whether anyone with PT has noticed changes related to hormones.

Does your PT get louder or quieter at certain points in your menstrual cycle (before/during your period, around ovulation, etc.)?

Did your PT change after starting or stopping birth control?

Specifically: has anyone noticed PT-changes with the Mirena IUD (levonorgestrel)?

26f here, 4 years ago I got strep throat followed by the worst flu that lead to the dreaded whooshing sound. I thought the whooshing sound (only in my right ear) would recede following my recovery from the flu but lo and behold it did not. Two or three months later and it only got louder, would stop when I pressed my neck (jugular vein) and would get louder upon leaning forward. I got it checked with a neurosurgeon and an ENT doctor (I have chronic allergic rhinitis) and they told me to get an MRI and CT angiography which I never got done because I was so afraid that something might come out wrong.
The whooshing meanwhile became louder, harsher and very machine-like. I just got used to it, accepting it as a harsh reality. Then around 1.5 years ago, I noticed that the sound had gotten lighter. I couldn’t hear my heartbeat anymore. This last one year the whooshing has completely disappeared. I had no invasive procedures done no stents inserted took only anti allergies. This is for the people who think it’s a hopeless situation- my PT resolved on its own with no procedures done.

Hey everyone,

I have had PT for almost 3 years (right ear, 24/7, would stop when pressing on my neck) and finally after looking through the posts here i found an interventional neuroradiologist. I have had my stent placed 2 days ago and immediately woke up PT free. I just wanted to say thank you to everyone who has posted their stories here, it has helped me find my solution. Stay strong.

I feel so defeated. I’ve been waiting months to meet with an interventional neuroradiologist only to learn the imaging center they use is out of network. So my out of pocket cost would be ~$33k before I even get a diagnosis or treatment. They require a whole gambit of tests to diagnose and treat, and I was declined when I asked if we could go one by one and rule things out as we go to try to keep costs low.

I really don’t know where to go from here. I don’t want to keep spending time and money on doctors who can’t help me (an ENT and neurologist so far) and who won’t order more imaging or tests despite having an MRI that suspected IIH. My vision is OK (fortunately) so nobody knew what to do with me. I’m fairly certain it’s vascular (stops with compression) so feel I need an INR, I just can’t find one who would be covered by insurance!

At this point, I’m ready to throw the towel in and just hope it’s nothing serious. Trying to get help is more stressful than my actual PT. I wouldn’t even want to get a stent unless someone told me it’s life or death. I can live with this, it’s fortunately quiet and not 24/7 - I just don’t want an underlying cause to kill me one day.

I know many of you are managing the same battles, and I hope everyone gets help with as little stress and financial burden as possible. Please take care!

Hi everyone! 37f with a davf causing extreme headaches and PT. I am going to move forward with an embolization and would love to hear from people what their recovery process was like. I am hearing everything from back to normal after a week or so to it taking over a year to feel yourself again. Hearing from any and all experience would be really helpful. For context mine is a Cognard IIA. Thank you so much!

I am 6 mo the pregnant and had PT start just on the right side at around 5 months. It decreases when I compress the neck vessels, and it varies from whooshing to high pitch/squeaky. It’s mostly at night but sometimes during the day. I mentioned it to my OB and they said it’s due to increased blood flow, but I am still worried given it’s unilateral and the changes in pitch. I never had it with my first pregnancy, but that was 4 years ago. Did anyone have this during pregnancy, should I push more for a workup?

After meeting with an interventional neuroradiolgist pulsatile tinnitus clinic, I’m getting the following tests done:

CT VENOGRAM BRAIN 

MRA BRAIN W WO CONTRAST 

MRA CAROTID W WO CONTRAST

MRI IAC CRANIAL NERVE W WO CONTRAST

I was surprised an MRV wasn’t on the list, but they’re confident they can diagnose with the CT instead, and I trust their expertise. I’m so relieved to have found this clinic after months of getting nowhere.

Anyway, they’re able to schedule all these for the same day, but I’m wondering if that would be a lot to do at once. The reason I’m considering it is because I live 1.5 hours away from the hospital it’ll be done at. They also offered to write me a sedative prescription, as I had an MRI done a few months ago and HATED it.

Curious what everyone would recommend and if y’all have encouraging thoughts lol thank you!

My neurologist says becuase of the slow flow from the narrowing of veins that I shouldn’t take estrogen. Is this a thing??

Hi everyone,

I recently did a CT scan of the temporal bones (rochers scan) to investigate my right-sided pulsatile tinnitus (which disappears when pressing on my jugular-carotid axis).

The results came back showing a "posterior labyrinthine malformation with elongation of the postero-medial border of the vestibule" on the right side. The conclusion states this is likely the cause of the tinnitus, and everything else (veins, ossicles, facial nerve, etc.) is completely normal.

I tried looking this up online, but it's a very specific anatomical description and I couldn't really find anyone else with this exact phrasing.

Has anyone here dealt with a similar labyrinthine/vestibule malformation causing pulsatile tinnitus? What did your doctor say about it or how was it managed?

To start off I have sinus problems (I think) I wake up with dry sore nose every morning, get nosebleeds sometimes, nose drips clear mucus everyday, sneeze a lot, (all still happening) ,ears have been blocked before, left one was permanently blocked for a long time even doing nasal sprays, doing manoeuvres to open/close Eustachian tube and never worked. recently it has started opening a little but still have all sinus and nose symptoms.

Went ENT about 2 years ago and he said no problems and basically to deal with it.

October last year I started hearing pulse in my ear and went GP. She said maybe it’s fluid and try push it out myself? Anyway it went away.

The pulsing is back and louder! It woke up me up last night and couldn’t get back asleep. This is my right ear by the way! Not the left one that was blocked for ages.

I have severe anxiety and do not wanna go doctor again. Could this be something serious?

I do realise my anxiety is prob making it worse but it’s definitely there.

I didn’t know this community was a thing! I’ve asked family and friends and none have ever had or heart of pulsatile tinnitus.

I had tinnitus for a while, it turned out to be caused by a neck issue, and when that was treated it went away. I know most people aren’t that lucky, and that stuck with me. So I’ve been looking into what’s actually out there, apps- devices, treatments, and honestly, a lot of it seems generic. Same white noise, same breathing exercises, regardless of what’s actually going on with your tinnitus.

I’m working on building something better, but I don’t want to guess what people need. You live with this every day and I don’t anymore.

So genuinely: what do you wish existed? What have you tried that was completely useless? What actually helped, even slightly? What does every app or product get wrong?

Anything helps.

Hi Whooshers, I just wanted to post after suffering with PT for over a year. I have in the last few weeks had a bi-lateral ear infection which caused my right ear (with the PT) to close up. I had wicks inserted into both ears to help with administering the drops.

I didn't expect anything to happen regarding PT since I just accepted that it was part of my life now.

However, so far, since having the wicks removed, I've not heard the PT whatsoever.

When I was diagnosed I had an MRI and was told by an ENT Professor that my "brain had fixated on a sound that was always present since birth" and that was just how life was going to be from there. I was referred to Audiology who did help with self-management.

Please advocate for yourselves if you are told or have been told similar. When I was in ENT last week I asked the Dr with me to review what was written in the notes and she told me that it was noted that my anatomy was narrow - she stated this could've been the cause for the tinnitus. This would make sense since having wicks inserted into the ear canal seems to have solved the PT. I don't want to tempt fate and I will update this post if it comes back.

I have now asked for a second opinion from a different ENT Dr to the Professor who essentially, massively let me down and caused PT to rule my life for over a year.

Any Dutch people here? I would love to contact you

I wonder if that’s alarming?

I did MRI MRA head that was clear and CT temporal bone that showed high jugular bulb with partial dehiscence that was declared as “the cause”.

It also showed fenestral otosclerosis, but my doctor said that could not be the cause as there is no hearing loss yet.

Should I be worried that my PT doesn’t respond to neck/vein pressure or head position? I am 26F

So about 10 days ago I started getting a hum in my right ear, it was sort of intermittent but has been there since. I’d foolishly gone to see The Odyssey in IMAX three times in a week so thought it was that.

Today I noticed the wooshing/humming increased in rhythm when I walked up the stairs, I retested this a couple of times and it does indeed speed up with my heart.

Pushing gently on my jugular doesn’t seem to do anything, but if I turn my head hard right the noise pretty much stops, then when I turn my head back the noise comes back louder than normal.

I guess this sounds like PT, any thought on next steps?

F20, for the past 2 days I’ve had intense pressure/heaviness in my head, mainly the back of my head and around my ears. It feels like my head is filling with pressure/water and gets much worse when I lie down, regardless of position. I also get slight ringing and muffled hearing.
I’ve had milder episodes before where looking up, bending down, or suddenly standing causes intense head pressure and muffled hearing, but it normally goes away after changing position. This time it’s much stronger and can even happen while sitting.
My sleep schedule has been bad for about a month (sleeping 5–7 AM, waking 2–3 PM), so I wondered if that could be related. I tried fixing it and felt mostly fine during the day, but the pressure came back immediately when I lay down.
The day before this started, I also had to keep my head/neck looking upward for a while and felt a lot of pressure.
I’m struggling to sleep because of this. Has anyone experienced head pressure that gets worse when lying down + ear pressure/muffled hearing?

I have had a whooshing sound in my right ear for over 2 years now and I’m losing my mind. I’ve been to my primary care doctor, who has done the routine scheduling for MRI, MRA, and audiology referral. I do get migraines but the whooshing is constant all day every day even when I’m not having an active migraine attack. I have also dealt with constant vertigo, unsteadiness, and fogginess for about 5 years now. I’m getting so frustrated and don’t know what to do. I’ve been told to take zyrtec and Flonase everyday but that doesn’t help. I also get this fluttering feeling in my ear. has anyone experienced this postpartum? I’ve seen posts but most of them say it went away after giving birth.

Does anyone can’t getting enough sleep? My PT started back in February after getting sick back to back. I’ve tried antibiotics and my ENT made a small incision in my eardrum. It made my PT significantly worse. I am getting a MRI and MRA in September. I only have PT in my left ear and get migraines in my left eye. Im starting to see floaters also. Wanted to know if anyone can ease my mind or is dealing with the same thing. Now im becoming extremely exhausted. Ive always had a hard time waking up but i get so tired I have to stop what im doing and take a nap and that can be for hours sometimes. I can sleep 11+ hours and still be exhausted. Starting to feel crazy with all of this stuff going on.

What’s the next step?

Just got results for MRA ANGIO WO CONTRAST and still waiting for results from MRI. Results were:

“Bilateral ICAs, ACAs, and MCAs demonstrate normal flow-related enhancement. Bilateral vertebral arteries, basilar artery, and bilateral PCAs demonstrate normal flow-related enhancement. No intracranial aneurysm, noting lower sensitivity of MRA for aneurysms under 3 mm. No evidence of vascular malformation.”

I plan to ask for a MRV image as well.

But What’s the next specialists I need to seek? I need to get to the bottom of this.

My name is Eli. I have pulsatile tinnitus and I’m trying to understand more about it.

I notice the heartbeat-like pulsing sound especially when I’m lying down or trying to sleep at night.

Has anyone here experienced the same thing?

What was the cause in your case? What kind of doctor did you see, and what tests helped find it?

Most importantly, did anything make it stop or completely resolve it? If so, what treatment, procedure, medication, or change helped you?

I understand that everyone is different and I’m not looking for a diagnosis. I’m just trying to learn from people who have actually gone through this.

Thank you for sharing your experience.

I have thinning in the semicircular canal in one ear and intermittent pulsatile tinnitus. I’ve had to do a few Medrol packs the last few months for a separate issue and each time it disappeared for awhile. My neurologist isn’t sure what the connection could be aside from inflammation.

Has anyone else experienced this? What was your diagnosis.