Whooshing along with heartbeat/pulse. It’s intermittent but happening quite often.
NHS says to contact GP and ask for an urgent appointment for pulsating tinnitus? Not sure if I should as it does come and go? Just seems like a fairly minor thing if a bit annoying. I’ve had a kind of ringing tinnitus for many years and live with it, it’s not too troublesome.
Any thoughts please?
before I was diagnosed with an inflammatory arthritis, I had pulsatile tinnitus, which only really bothered me at night, where it stopped me sleeping. I was under rheumatology who weren’t interested, but my gp ordered a CT and referred me to ENT. I was told my carotid artery was inflamed, only at that time they didn’t know why. I was being treated for polymyalgia, and had lots of symptoms of GCA, which I was eventually diagnosed with. I also had painful jaw which was found to be due to my AS, and oral medicine said the inflammation in the jaw was filtering out to nearby structures. He said the tinnitus could be due to that, again confirming it was inflammatory in nature. They increased my methotrexate dose, and all the head issues subsided. Haven’t had it back since.
I have regular if such a thing tinnitus which has started with the ra and seems to be getting worse. Like you I just never bother sorting
note my diagnosis is Adult onset Stills disease which for me manifests as RD. Diagnosis 1979 aged 17 but steroid free since mid 20s and manage with splints and codeine most of the time.
In February 2023 I became ill and tests for cancer commenced. By August I was having vertigo and my own lay research led me to find that RD can damage the tiny ear organs causing whooshing which I also have. Dr dismissive of anything I say and further reading brought up thyroid issues may cause tinnitus and whooshing sounds along with a strange pressure in the head. I have cluster migraines too.
So no answers for you but I know what you mean and how it feels. I describe mine a having a helicopter landing inside my head. No wonder dr thinks I’m mad.
My diagnosis is also Stills disease and OA. I started having a whooshing or hissing sound in both ears just before Christmas but thought it might pass but it hasn't. Was doing yoga 3 weeks ago and got so dizzy I couldn't get off the floor for 1 hour. Told at the hospital its Vertigo and was given head exercises which is helping ,but my head feels heavy and this morning I was so dizzy getting out of bed. I'm not sure if it's just Vertigo anymore.
That’s interesting as I’m beginning to wonder if I have lupus instead of/or as well as Stills having developed new ailments in recent years. Symptom's very similar and I have the distinctive malar rash. Something is going on inside my body for sure. Cancer has thankfully not been found. AI conditions are hard to identify and can cross over and certainly one attracts another. It’s all a bit of a mystery to my dr. How do you manage your Stills?
I'm on a anakinra inhection daily, and 5mg of Prednisolone which I don't seem to be able to get below that without having a flare.Back in 2015 I was first diagnosed with GCA as I had a lot of the symptoms connected to GCA but that was later dismissed , but it took years for the rheumatologist to find out what was going on. I'm not sure if they're actually still sure.
In 1979 it took four months of agony and being bed bound before a week in hospital provided the diagnosis. Then it was steroids, aspirin, Indocid, distalgesics etc and splints for the knees and wrists. It was monophasic but the joint damage and immobility remains and now worsens with menopause and age. It changed the direction of my life as it was in the middle of my A levels and then I could no longer pass the medical to join The Royal Airforce as planned. I did however manage a good job in media sales for 35 years and have two sons so I’m lucky. My main issue these days is the constant sore throat, dry eyes , afternoon fever, fatigue and joint pain. Other AI have joined in; Lichen Sclerosus, Interstitial Cystitis and now I fear -Lupus but all in all I get by.
Had it for years. Better when RA better controlled: worse when it’s not….i mention it on and off. Seems to be one of those things. No one not even ENT has suggested any treatment.
Get the referral done .Even if it's nothing better to know and as others have said can be linked to inflammation but might be just a build up.of wax.
A friend of mine has/had severe tinnitus. He joined tinnitus.org.uk/
He says that they have been a life-saver - and extremely informative.
I have tinnitus and can hear the whooshing in my ears. First noticed it when I was 12 and had what was probably flu. I have also had a constant sore throat and other things going on, but when the ENT consultant finally talked to me, he just said I was getting old and to stop worrying.
I hate it when they use the excuse of age to not bother with women when there is clearly something else going on!
I too suspect that it is inflammation as it became constant when I started having thyroid problems in my 50s.
I have tinnitus in my left ear, hissing noise . Had consultation with ENT last week and as it’s only in one ear are sending me for an MRI to check nothing pressing on nerves in neck. Waiting for appointment to come through.
I'm sorry you are going through this. I also have tinnitus. Please let us know the outcome of your tests? Thank you
If it's only in one ear it needs to be investigated. My husband suffers from tinnitus and it was just a passing comment he made about it being in one ear only when he was having an hearing test at Specsavers that resulted in GP being informed and a referral to ENT for a brain scan. It can.be the result of a benign tumor pressing on a nerve in your brain (Don't want to worry you). His scan came back clear thankfully.
Have you been checked for atrial fibrillation? I pretty much dismissed my pulsatile tinnitus as an occasional minor annoyance, but realized it totally disappeared after my catheter ablation!
Speak to your Gp. I developed vestibular neuronitis which felt like I was on a moving boat absolutely awful. Can’t drive now. So seek med help sooner 🙋🏻♀️
I’ve RA and have also had tinitus for years. However I now wear one hearing aid (other ear is useless). My tinitus has disappeared as the audiologist has done something with my hearing aid settings and I am t free! Brilliant. My hearing in that ear wasn’t poor, but
Hi I don’t know about tinnitus but I get the whooshing noises & rapid heartbeat. It happens when I’m going thru a bit of an anxious time & I think it’s causing inflammation . Being on medication exacerbates anxiety for me but we need the meds so when I understand the anxiety I just try to do things that calm me. When I understand it, then I don’t worry & it goes. Xx
I saw GP, apparently this is very common, nothing to worry about…. Not worth doing any kind of referral as the waiting lists are very long, most 18mths to 2 yrs.
Why then, does the NHS website tell you to contact your GP and that most people presenting with pulsatile tinnus need to have further investigation? Is it just an overloaded system?
The message seems to be - go away and don’t bother us unless you are in very seriously poorly….
Pulsatile tinnitus
Etanercept now Imraldi
Hip not able to bend now 
RA problems with meds
