r/PulsatileTinnitus

Hi Guys! I always have PT 24/7 and its been that way for approaching 2years. I had all the scans done a few weeks back and I have an appointment in July to discuss results. This week has been particularly bad, some of the loudest its been however I have woken up today and it's completely silent for the first time in a long while. I know I should cherish this and be happy but its left me slightly concerned? Could this be a bad sign for any reason?

Since we can hear our heartbeat I wanted to know if anyone ever heard their heart during a palpitation . I just did for the first time and it was so wonky lol. Usually it’s just a whoosh , whoosh, but this time it was like beat beat, beat beat, then back to whoosh, whoosh. Lol

Caught a cold back in December resulting in pulsing tinnitus. Back in April the GP said fluid in the ear and retracted eardrum. Saw a private ENT and he said your eardrums and sinus are fine.

Sending me for a CT. I have on/off tinnitus accompanied by ear fullness. Is this worth investigating. I already have regular T and I am worried I wont be able to cope as its permanent. I get bubbling and squelching.

My T does not stop when I press jugular vien. Is it worth going private for all the scans.

I've had Pulsatile Tinnitus for around 6 months. Largely ignored it at the start as it was only happening a handful of times a week, and would stop if I moved my head slightly.

With the help of AI (I know it's not great but I found it very useful) it told me that the whooshing I was hearing was likely PT. Confirmed by telling me to time it with my pulse, and holding my neck stopped the PT until I let go.

Went to Dr who referred me to ENT. I'm in the UK, so NHS referral.

That was about 2 months ago. I'm still waiting for that NHS initial ENT appointment.

Fortunately I have a form of private healthcare where I can beat the NHS waiting list and so immediately started that ball rolling.

Seen by an ENT specialist, he referred me for a full hit CT scan.

Went back today for follow up - he confirmed the CT scan shows that I have likely paraganglioma. He's ordered an MRI scan whilst urgently referring me to the right NHS department.

Not great news but at least I have an answer to work with now. Hopefully the next part of the NHS will be quicker as they will have all of my scans.

Useful to hear from others who had this.

Hello, I have pulsatile tinnitus in both ears. It worsens when I exercise and doesn't return to normal. I had to stop exercising. What could be causing it? Does anyone else experience this? Is there a solution?

I have been suffering horribly with pulsitile tinnitus. I also was tested for POTS. During that testing...they checked my Iron, ferritin and other things. I have anemia.

I just recently learned that this can cause pulsitile tinnitus. So if anyone had unexplained swooshing in your ear (hearing your own heartbeat) then this could be one of the reasons.

its improved slightly. still have fluid in the ear but cant get used to it still get upset and cry when i hear it. GP doesnt think that a referal was nec despite having fluid on month 4 after a cold.

Hello everyone! I wanted to ask how many people with PT also have TMJ? I’ve been talking about it with someone on here and I’ve been using my mouthguard for the past couple of days and noticed a huge difference in the volume of the PT!!
Unsure if it’s due to diet changes or the mouthguard as I’ve been doing both. Has anyone else had the same experience?

Started a week ago during night. I had extremely clogged ear for three days prior, but unsure if it was related. GP looked into my ear, my eardrum looks healthy, but I have swollen lymph nodes. Only happens on my right side and sounds like “whoosh”, not beat.

What’s weird is that it gets extremely bad at night and it helps to hang my head off the ledge of the bed.

Prior to this, I was taking Betahistine, Zodac, and Prednisone for the clogged sensation, which wasn’t a great combination looking back at it.

It’s been a week and at night, it’s absolutely roaring. I’m extremely depressed and had 20x panic attacks. I am exhausted. My GP sent me to a psychiatrist and they prescribed me antipsychotics and antidepressants.

I've had PT for 20 months, and today after having undergone countless tests and seeing several doctors, I was finally approved for a stent procedure in a few weeks. I've been waiting for this approval for over a year, but now that it's finally happening I'm actually kind of nervous. I've known about all the risks involved ever since I first read about it last year, and I was fine with those risks as long as it meant the whooshing would finally stop, but after months and months of waiting, I subconsciously thought it was never going to happen, that I would keep having to wait 3 months for a single appointment just to be told to wait another 3 months for the rest of my life. It just didn't seem real, and now suddenly it is. The INR seems to have covered his bases at least, he wants me on blood thinners for two weeks before the procedure and has pain medications for me in the weeks and months afterwards. I'm glad he's taking precautions, but I'm still terrified of the risk of stroke, damage to my vision and whatever pain I'll be in after the procedure. I want the whooshing to end, but I'm scared of what that might cost. Do you guys have any advice for me? Thanks in advance.

I work in a clinic that sees patients with pulsatile tinnitus and other underlying conditions that may cause it as well.

I obviously can’t give any medical advice or go into too many details for privacy reasons, but if anyone has general questions about it, I can try to help based on what I already know from working in this clinic specifically.

Saw a post that inspired me to ask this question. Would love to hear people's stories of the tinnitus going away. Mine started in January after a bad headache/cold. They found some abnormalities on my CT and MRI but it's all right sided and my tinnitus is on both sides, so they think it's unrelated. Hoping it will go away on its own some time soon....

hey, i don’t quite understand my pulsetile tinnitus yet, so i’m wondering whether anyone has had it extreme at night, like the sound of your eardrum basically being sucked in, and then ok briefly in the morning?

I'm just curious. Please share your experience. Sometimes my ears ring, other times it sounds like a heartbeat. Some days it sounds like woooooo whoosh.

So I've just come back from the doctor and will soon be off to an ENT followed by imaging etc. After waking up a week ago I had a pulsing sensation in my left ear only. No other symptoms. I wanted to ask you guys if this sounds like what you've experienced or something else (just so I know what to prioritise moving forward - it takes time in this country)

I'm a male, mid thirties, athletic and don't smoke or drink. Blood tests show that I've had low hemoglobin and MCHC for three straight years but ferritin is fine. I'm assuming I may have that trait that under utilises iron.

My ear sounds like it has water in it but it's totally clear. The pulse is faint. At first it was worse when laying down. But I think it's been gradually getting more faint. If I yawn then the pulsing stops and it becomes like a constant whoosh. Even after exercise I struggle to tell whether it's actually in line with my heartbeat or not. I can't stop the sound no matter where I try to compress around the ear. It also has stopped for 10 seconds on two occasions while sitting in bed. But it started soon after. My hearing sounds mildly muffled. It's definitely pulsing but from what I've read my case seems quiet in comparison.

I would guess this is an ear problem based on my low risk for vascular issues but I'm gonna get it all done either way.

Thanks for any insight you can provide and sorry for the info dump

Recent diagnosis for my wife, and we’re trying to sort things out as she seems to have symptom crossover with some other possible problems. I wanted to find out if anyone has or had similar symptoms and patters to hers that are 100% caused by hypermobility, specifically in the neck.

She wakes up feeling completely fine. 30 to 45 minutes into being upright, standing or sitting, the symptoms start. Occipital neuralgia, some facial neuralgia, brain fog, tinnitus, head in a fishbowl feeling, and pressure feelings in the ears, eyes, and face. Confusion at times, like floaty dissociation, facial neuralgia at times, neck pain, shoulder pain, upper back pain, and a feeling of a heavy “rolly” head. These change in severity but do not go away unless she lays down flat for an extended period of time, often based on how long she was up and what activities she’s done. It may take an hour or it may take 4 for her to feel some symptom relief. She gets up, and the same pattern starts again.

A neurologist floated the idea of ligament laxity in the neck, causing the skull to settle down onto the structures below it like nerves and spinal cord etc. (They have also floated the idea of a CSF leak which we are also researching). This neurologist is in over his head and unfamiliar and isn’t really helpful beyond tossing out ideas.

So I’m asking if anyone else presented like that and had these issues and symptoms. If so, what were they and what was it like. What helped and what made it go away. Did any of it totally disappear? Who and how did it get diagnosed as a hypermobility issue for sure and not something else?

Any help is greatly greatly appreciated.

Hi! I’ve had this a few weeks and some things were quickly dismissed but I’m struggling to figure out what this could be while waiting for more info

My pt is only in one ear, intermittent not constant.

It completely goes away when lying down, every time

Mild occasionally when standing, at its worst sitting on an unsupported couch

I can make it go away completely if I open my jaw wide, lean to the opposite side or turn my neck to the opposite side. Goes away if sit crossed leg and lean forward.

Worse at night and *not* because it’s quiet, it’s louder here at night. Worse still after dinner until bed time, goes away when lying down as mentioned

Any clues?? The lying down improving it really seams to contradict most things that usually cause pt so I’m totally confused

ETA no headache, no vision change, no dizziness. Ear pops/crackles but I think that’s always happened

Three days ago, my right ear became clogged. It was a pressure sensation, as if I couldn’t pop my ear despite being on land.

Two days into it, I heard a whoosh after stretching. I didn’t pay attention to it as I sometimes heard it after exercise.

However, the following night became a nightmare. Whooshing was constant in my clogged right ear, with no relief. I tossed and turned until 6 AM, to no avail.

Tonight is the same story. It’s even louder than yesterday and I can’t sleep. Again, only in my right ear.

I recently had an ENT evaluation and they told me my middle ear looks good as well as my hearing (audio). I also had basic MRI done a year ago and everything was within norms.

I’m extremely scared and exhausted. I cannot sleep or focus. Lying on my side is impossible right now, it’s that loud.

Any ideas to cope? Or sleep better? I will probably stay wide awake once again, but if this is truly forever, I cannot not sleep.

5 months ago I caught a cold and developed PT it was due to fluid behind the eardrums and retracted eardrum as the GP said in feb and april. It went quiet for a few weeks and imporved massively. Now I had a PT episode today so far lasting 2 hours max and now one started at 7pm and is not stopping. I am so sad and feeling distraught I get ear fullness and heaviness. The whoosing is not as bad as it was in the beginning but how will I live with PT and regular T. My right PT ear feels heavy, and slightly full.

Anyone else living with PT and T I dont see this getting better because I also suspect I have ETD as for 6 years when the T started so did the crackling and clicking.