I have pulsatile/somatic tinnitus and am waiting for a return visit to the audiologist for sound therapy. I was shown an in ear device that looked like a hearing aid last time. I don't have any hearing problems fortunately. I realised that I might as well have a go using bluetooth headphones to distract my brain on my own while waiting and it is going well.
I'd be interested to hear if anyone else has had sound therapy for pulsatile tinnitus and get some idea of how it works for this type of tinnitus.
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linzbfc
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Hi, I have pulsatile tinnitus and like so many others on here I don't seem to be making much progress with ENT although my GP has been quite symapathetic.
I haven't yet had sound therapy but have just been referred to a tinnitus clinic so will wait to see what happens.
I have however been using white noise to help me at work using an app on my mobile. I switched to Bluetooth earphones after forgetting I was attached to my phone too many times when I jumped up from my desk! I work in an open plan office and was originally sat with my back to another bank of desks and it was horrendous.ive now moved and have no-one behind me but it does get quite loud occasionally.
I've also used it to help me sleep, either with or without earphones. I just set it for a couple of hours & I'm usually asleep by then.
I use different sounds during the day to the night - worried I might fall asleep at my desk! I started with white/blue/pink noise but found that as my PT has got louder the rhythm of a train on a track or a cat purring is better.
I previously understood from ENT that the tinnitus clinic was held at the hospital which is an 80 mile round trip but I have been told today the referral can be to my local hospital.
Your PT sounds a lot more intrusive than mine. I am fine during the day. In fact I find it very difficult to notice the PT when I am outside which has seemed odd. Mine started after a concussion. I think I spent so much time in a quiet environment that my brain started to listen to things it shouldn't do. This has always led me to believe it is reversible. I've made a track of birdsong from my own garden which seems enough to distract me from 'singing along' to my noises. I've also found that just putting an ordinary earplug in one ear helps. I have no idea what's going on but I am sleeping better as the noises are very quiet.
I'd just like there to be more info available that is specific to PT instead of us being lumped in with the tinnitus sufferers.
Yes you are right and I think there is a lack of understanding even within the health profession. At my appointment today - my third at ENT - I was given a badly photocopied 'fact sheet' about tinnitus, nothing about pulsatile tinnitus. It included some Web links which I pointed out I had already accessed. Thankfully one was the BTA.
I first noticed my PT in about May 2017 as a soft pulsing that sounded like it was in the distance, more noticeable at night. I remember getting out of bed to check if the noise was coming from something in the house!
It has gradually got louder and more troublesome. I've had a number of mild concussions over the years, knocking myself out a few tImes but never hospitalised and nothing recent. But I have suffered from migraines with vertigo for many years.
I had an MRA in April which showed an abnormality - an AVM - and ENT tell me they have referred my scans to a neuro radiologist straight away but I haven't heard anything even though they say they've chased it. And when I looked up the person they say they've referred it to he specialises in paediatrics!
I'm seriously considering going back to my GP for a private referral.
I'm glad you've found something that helps - it is sometimes trial and error - but good you've found that relief quickly.
The start of yours is very similar to mine. I had a strange beat when I lay on my right side. It wasn't an issue till it started to be evident during the day and I thought it needed checking out as I'd suffered quite a bad bang to my head. I've had a CT scan and an MRI. The CT was before the PT started so I don't know if it was looked at for anything related to the PT. It's not good enough that you had an MRA in APRIL and it still hasn't been sorted. Have you tried PALS? They are good at getting people moving for you.
My audiology appointment is at the start of September so hopefully I'll have a better idea of the science of sound therapy by then and my own theories will have continued to work ( fingers crossed ).
Thank you - I will look into PALS. I have heard of them.
I am pushing for some action on two accounts - firstly and primarily because it is affecting my day to day life and my work. I do seem to have sorted out a better sleeping arrangement now which certainly helps together with a more positive outlook.
But secondly, I scuba dive and I am getting conflicting answers regarding the AVM as to whether it is safe to continue. I have a holiday booked for 6 weeks time, some of which is diving, and at this stage I still don't know if I will be packing my dive kit or lots of books to read instead! The consultant was very casual about it but his answers showed he lacked understanding of the issue, the doctor I saw yesterday was much more cautious. I have referred to a diving medical referee but again, I am still waiting for an answer! Its just frustrating having to wait all the time - and that causes stress which makes the PT worse!
Like you I want to know what I'm dealing with so I can get the most out of my appointments and be able to make informed decisions.
Sorry to hear you are having problems. I sounded so hopeful about getting help 3 years ago!! All l got from audiology and ENT was so much stress l gave up. They did give me a white noise generator for my ear but l have no idea if that made a difference. Sonce then my noises got a lot worse then thankfully began to improve in several abrupt overnight changes. It's been like the blood flow changed in my brain and the noises calm down. It has made sleeping easier which is the main issue. It really is a good idea to try to stop your brain looking for the sounds however hard this is.
It is mostly very calm now thanks, much easier to cope with. I have noticed recently a definite link between swimming and having a bad night of pulsing sing song noises. Before Christmas l stopped swimming for a few months and had relative peace. When l restarted swimming where l do front crawl with a lot of head turning the PT was worse ( though it goes quiet for an hour after l leave the pool ). I am now trying to stretch my neck backwards after each swim to try to control this. It seemed to work ok this week.
Thanks, unfortunately the link isn't working for me. I've read all the BTA leaflets they gave me ( I'd already read it all on your excellent website before my appointments ). There's nothing specific about the science of how it works for pulsatile tinnitus from what I recall. I can understand that using a similar frequency to a person's ordinary tinnitus would be beneficial. I'd just like to understand in advance more about the science for how it works for PT.
Can I also thank the BTA for the information leaflets it provides BUT I feel that it is being used by time pressed NHS doctors and audiologists as a substitute for actually listening to patient's concerns. This is particularly vexing for those of us with PT as we are being given leaflets about tinnitus ( OK there is some overlap ) which feels like going to the doctor with a pain in your hand and getting information about your foot.
My ENT consultant hadn't even heard of the connection between PT and iron deficiency ( taking iron tablets reduces the volume of my noises ) and that is plainly on the NHS website! She made me feel like a nuisance for even suggesting it. This is why I feel the need to work out what is going on for myself.
Hi, like Linzbfc I cannot access that link. However I have found it using the search bar. I had already read the leaflet and it did help especially at the beginning.
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