pulsatile tinnitus

[Jul1an]

Hi , based in London here, anyone else have pulsatile Tinnitus? I’ve had it for the past 5 months and have been referred to ENT at st Mary’s Paddington but that’s in 9 months time. Do hearing aids help mask the Tinnitus ?

[RobertCLL]

I have had pulsatile Tinnitus for about 4 years, also the regular tinnitus. I had the doppler test of the main arteries in the neck and a CT scan, but all proved negative. There is an expert at the Addenbrookes Hospital Cambridge, Patrick Axon, you might like to go and see him.

[Upbeatmap]

I have pulsatile tinnitus caused by something called SSCD. If you have other symptoms such as autophany and hyperacusis, you should mention this to the ENT.

If you have private medical insurance or can pay for it yourself, I’d also recommend Patrick Axon.

I had 3 separate operations in an attempt to fix mine. Unfortunately, they didn’t really work all that well so I’m now focusing on living with it. I was told that those that have it on both sides (as I do) don’t tend to get a good outcome compared to those that only have it one side.

Good luck and I hope that you get it resolved.

[SueJohnson in reply to Upbeatmap]

I have pulsatile tinnitus. If you have trouble sleeping as a result, as I do, I have some suggestions. Reply to this so I know if you need or want them.

[Cat_23 in reply to SueJohnson]

Hi Sue, I would like to hear your suggestions 😊

[SueJohnson in reply to Cat_23]

I got a headband with earphones from Amazon and downloaded an app on my iPhone which had various sounds. The one I liked best was heavy rain. It was very effective as long as the pulsatile tinnitus wasn't too loud. Then I tried melatonin. It dulled the noise so I was able to sleep, again if it wasn't too loud, but I found I had balance problems until I drank my coffee and to a lesser extend extent for a couple of hours afterward. What works great is ambien! Puts me to sleep regardless how loud it is. Unfortunately I can't use it every night because of the fear of tolerance but I can use it every other night and the headband the other night. Hope this helps you. It is a miserable condition. I have an appointment with an ENT doctor on April 21st and hope it is something that can be corrected by simple surgery.

[Darren6]

Hi Jul1an,

I successfully used hearing aids for hyperacusis and tinnitus. They can be used to provide sound therapy aswell as for any hearing loss you may or may not have.

I saw an audiologist in Harlry street who was hugely helpful compared to the service i got from the NHS. expensive but worth the money if you are struggling.

[Skywalker300]

HiHearing aids help mask the sound while wearing them, but you may notice PT when in bed at night/morning slight more. Listening to sound machines or YouTube/ Apps for white, pink or brown noise etc may be helpful. Take care

[PABLR]

I have pulsatile tinnitus but not continuously. I also have a vascular loop which 'may' be the cause, and is not serious. If it gets worse an operation is a possibility, but honestly with four different sounds at all times, what's one more? Or perhaps would one less make a lot of difference? You will get peace of mind if you can find out the cause and know it's not serious of itself.

[Destructor]

I have constant PT and am considering an operation with Mr Axon through the NHS to address Sigmoid Sinus Dehiscence with a mastoidectomy and resurfacing. It was only picked up after a CT scan so even if nothing is picked up after you have MRIs, try and get a CT. It's taken 3 different hospitals and several MRIs to get to this point so if you can see Mr Axon (ENT) or his team it may save you a lot of frustration. Mr Higgins (an Interventional radiologist) also works alongside him either in London or at Cambridge so it may be worth seeing him or getting him to have a look at your scans if taken elsewhere.

Hearing aids help those with hearing loss (which I don't have apparently) as it enables your ears to hear more sounds in the world rather than just listening to the internal pulsating noise. You may also be able to get masking devices through the NHS. Personally these irritate my ears and so I try not to block my ears with earbuds, headphones or even using a phone normally as it irritates my ears and makes my PT worse. I also have deep droning sound rather than the whooshing that most people seem to experience so it's hard finding a sound that will mask my sounds. There are some apps out there you can try which may be of use to you.

[Non-Leaguer in reply to Destructor]

Sorry to hear about your irritated ears. Have you tried 'Shokz headphones, They fit over the back of your head with the two 'speakers 'playing sounds through your cheekbones. Really good as it leaves your ears open to conversation, T.V, traffic etc. Best Wishes

[SueJohnson in reply to Destructor]

Do the tests determine if you have it in 1 ear or both. I can't really tell. I do have an upcoming appointment with an ENT specialist.

[dutyhog]

I’ve has PT for decades in one ear. Hearing aids mask it if there’s external sound to amplify. When quiet most of the time I’ve grown to ignore it. Very occasionally I use my phone at night to send to my aid a recording I made of water trickling - it lasts 90 minutes and I’m always asleep before it ends. The phone goes quiet when it stops.

[Cat_23 in reply to dutyhog]

My PT is linked to my pulse rate and causes me anxiety particularly at night. My pulse rate rises causing more anxiety. I have to get up and walk around and distract myself with the tv. I sometimes are able to relieve the PT by 'poping' my ears. I take 5ml Remipril and wonder after reading other comments if this be an adverse affect 😏

[dutyhog in reply to Cat_23]

I don’t take any drugs and am suspicious of their usefulness with PT and their side effects. I feel that sound that almost mask are best for me.

Actually the PT can be useful. I can listen to it when out walking and notice if my heart rate is faster than it should be, and slow down if needed. Also it was the best way to be aware of what was going on during a spell of irregular heart rhythm last year.