Pulsatile Tinnatus Fellow Suffers

[Zeusee1]

Hi Just wanted to started a thread for anyone suffering so we can support each other. I’ve been suffering for a long time and finally decided to see the Gp so hoping to get some answers! If anyone got answers and treatment let me know x

Hello Zeusee1, I’m a fellow sufferer. It’s crap isn’t it? I’ve had it for about ten years now and it’s really tough so I sympathise. Good luck with GP, I hope you find some answers - let me know! I was referred to ENT and had a CT angiogram which showed nothing untoward in my head and basically told to live with it…some days are better than others and I’m yet to work out why. I’ve googled it and tried various things but so far nothing seems to work, but onwards and upwards.

I developed this very intermittently 9-12 months ago. It was mainly noticeable when I was (TMI WARNING) sat on the toilet.

It was among a range of other head based symptoms that I had started with around 6 months earlier than that.

It prompted me to pursue some investigations through the gp as I thought I couldn't ignore it any longer. Blood tests and a MRI proved no abnormal issues which naturally put my mind to rest but doesn't obviously explain the PT and other head symptoms. Is it another peri/menopausal gift?

Thank you for your replies sorry to hear it’s something your still dealing with! I hear it anytime I’m in quiet ie toilet as you said @NoDramas or lying down in bed , sat in the car etc. I’m hoping not to be fobbed off by the Gp. @Midwinterblues @NoDramas Do you experience it in both ears? How do you deal with it ? I’ve had a look on the Facebook whooshers page and there’s quite alot of different tests they can do so maybe if you guys are feeling fobbed out you could try some of those X

I developed it in my first pregnancy but nothing sinister was ever found. It doesn't really bother me anymore as I sort of learned to dial it down. Oh and I constantly have the radio on in the background as I don't like silence.

I get it on and off. Have done for a few months. Drives me mad sometimes but never been to GP.

I developed this in my third pregnancy, it was crazy and I really struggled at night when all was quiet apart from my head! Sending my sympathy! Mine continued for months after delivery too. 13 years later I still get a random whooshing but can't link it to anything. Doctors blamed it on all the extra fluid in my body from pregnancy but then it didn't magically disappear.....

When I first started with it I naturally googled it and my immediate concern was something vascular (carotid artery etc). GP happily listened to my neck with the stethoscope.

The whooshing isn't something I've experienced but if it's accompanied by vomiting/head movement I think they would want to rule out intracranial hypertension (among other things).

Given my blood tests and MRI were satisfactory my symptoms have been attributed to atypical migraine. It's ongoing but it doesn't interfere with real life.

I forgot to say that yes I do experience in both ears, left more than right to start, but it feels central mostly.

I had it and was investigated rather quickly during Covid
They did find a brain tumour but its not dangerous and VERY slow growing. Mine hasnt grown in 3 years.
Im am slowly losing my hearing on that side though, which is annoying
(Have to have brain scans and hearing tests yearly)

The tinnitus can be pulsating - or like static which is more annoying

Its bloody annoying i know that and sympathise with you all

I’ve got my hospital appointment soon to begin the process of (hopefully) figuring mine out! Really hopingh there’s a simple cause, and a simple solution, but it doesn’t sound like there will be?

It's super annoying isn't it. I have it in one ear at the moment and got an ear infection in that ear recently which made it worse! I haven't asked the GP about it but it's intermittent rather than permanent it seems. You have my sympathies!

Thanks for everyone’s replies, feels a bit less lonely when hearing from other people in the same situation! Mines is more the heart beat sound but it’s also like I can feel it also. @AllTheChaos are you having to see ENT first? @DryBiscuit glad you were investigated quickly! Were you experiencing other symptoms? X

I have that type, also the ringing and buzzing types, and the very rare related condition known as musical ear syndrome. This is when your brain takes ordinary household sounds and converts them to music. The music is constant so I keep the TV or radio on to drown it out. There is never a moment in the day when I am not experiencing one of more of these types of tinnitus.
I'm having the pulsatile type right now as a matter of fact.
Nothing I have ever tried has helped much and I've just resigned myself to it.
There was a reduction in the musical stuff after I had my ears thoroughly cleaned out, but it was only temporary. I love music but I don't want to hear it every waking moment. I may have to see a hearing specialist, but so far have not been arsed to do it. My GP is an hour's drive away and I get anxiety about driving, so it's difficult.
I hope you sort yours out OP. Please let us know if you do.

I developed it suddenly and it turned out to be IIH which is increased brain pressure. Mine is low level.
But, it can be dangerous and even cause blindness.
An MRI found it but an optician can also see it with one of those photos of the back of the eye.
Something to check out for some of you, maybe.

Mine is only in my right ear, have to sleep on that side which dampens down the sound otherwise it keeps me awake. Like you it’s worse in quiet moments - in bed or sitting alone. Distraction helps but obviously you can’t be constantly distracted. It’s definitely worse when I’m tired but because I struggle to get to sleep (and peri menopausal) that’s pretty much all the time. I also have ‘normal’ tinnitus but that doesn’t bother me nearly as much as the pulsatile tinnitus. My hearing is affected and I really need to have a hearing test…am girding my loins. I’ve started to take B12 and iron as a recent blood test suggested low ferritin - if that’s the cause I’ll rejoice if it means there’s a remedy!
Sending you all best wishes, it’s a real sod.

Sorry to hear that @XChrome that sounds really annoying! Double hard when you throw anxiety into the mix. @Oceangreyscale are you getting treatment? Glad you have an answers. @Midwinterblues I really hope it’s the ferritin for you that would be amazing! Sorry to hear you have another type of tinnitus aswell. I always thought everyone heard their own heartbeat in their ears 🤣 nope!

Yes seeing ENT next week! Not sure what to expect, but keeping fingers crossed as don’t know what to expect.

Yes dd has this, was picked up at a routine eye appointment in June.

Dd hadn't connected the tinnitus to anything prior to that.

I get this intermittently. Often after a virus and it can last from days to weeks. The GP basically just said hard luck.

@AllTheChaos wishing you lots of luck! Let us know how you get on and don’t let them fob you off. Have you been experiencing symptoms for awhile? @Perroi glad that yours disappears at points! Wish that was me. @tobee ive had an eye test recently which never picked that up but I do sometimes get pressure in my head when bending over / standing up. Not sure if that’s related x

I had swelling of the face on that side but it turns out that the swelling had nothing to do with the tumour

Mine started when I got Covid. I can tune it out most of the time but would love to hear the sound of silence again!

Hopefully it resolves for you @JustGotToKeepOnKeepingOn I’ve seen a lot of chat about taking b12 so I might give that a bash x

Partner’s started after he caught Covid - Apparently its a ‘thing’