Pulsatile Tinnitus - GP says it’s normal and to look at YouTube?!

[Cezza2020]

Morning,

I have been suffering with Pulsatile Tinnitus which started a few months ago. This last week or so it has been been really bad and associated with a pressure head ache. I’m struggling with sleep and started using an app with rain sounds to help distract me.

I had a telephone consultation with my GP yesterday (no face to face due to Covid-19). She simply said it’s common, nothing to worry about, plenty of self help treatments on line and that was it! When I research the condition everything points to the suggestion that it should be investigated further to see if there is an underlying cause so at least that could be treated and hopefully ease the symptoms.

Am I right? Should it be looked into further? I appreciate there may not be a specific cause but it would be good to know that for certain.

Thanks in advance.

[Hidden]

I have the same thing plus tinnitus, my hearing is good. It drives me crazy. Its like a grinding whoosh in time with my heartbeat,I get the feeling of pressure in my head too. I thought it was furring up of the arteries in the head but I haven,t checked it with my GP, whenever I see him I always feel fobbed off with his explanation.

[Cezza2020 in reply to Hidden]

I think I will phone again in a couple of weeks - let things settle down a bit in the surgery and ask to be seen face to face.

[DownUnderInAus]

Hi, I also have pulsatile tinnitus, 11 months and counting. I've been to 3 doctors and one ENT. The Dr's have largely dismissed it as nothing to worry about, like you I researched the condition and believe that it should be investigated further. Mine sounds like a heartbeat (thud thud) in my left ear, it's my only symptom and I can vary it by moving my neck left to right or up and down, I had an appointment with another ENT but he has cancelled it due to the corona virus. Could you please tell me what yours sound like? Thanks

[Cezza2020 in reply to DownUnderInAus]

Thanks for your reply.I’ve been describing mine as a wind turbine - a wooshing noise with a beat, as if the blades of a turbine were spinning around, and around, and around.

My main concern this week is the pressure head aches. I’m not prone to head aches of any description so I would prefer to have the reassurance that there is nothing underlying. I’m perfectly happy to accept that there’s no cause to be found, as long as it’s been looked into.

[Cezza2020 in reply to DownUnderInAus]

Also, I’ve found when lying in my right side, the beat through my head/ear is unbearable. It’s being able to feel it as well as it hear it.

[DownUnderInAus in reply to Cezza2020]

Mine is also a whole lot worse when lying on my right side, sometimes when I roll onto my left side the pulsing stops. I've also found if I lye flat on my back without a pillow the pulsing also stops..,

[Stiggy123 in reply to Cezza2020]

Hello. I have never commented on here before. I have had pulsatile tinnitus for 10 years plus. I am very interested that you say you can feel yours, as well as hear it. I have this same sensation. I have been to ent consultants had a brain scan 10 years ago. Everything fine... Of course!! I am just reading about stimulating the vagus nerve using a tens machine type contraption look up Parysm Health tvns treatment. Trouble is I can't find much info on it and no reviews really. Sounds like it could help though if you havnt heard of it of course. Also changing the neuroplasisty of your brain by rewiring your thinking which I kind of go along with but blinking hard to put into practice. Very best of luck. Amelia

[T-shirts]

Hi, sorry to hear you have pulsatille Tinnitus, it's horrible I know, I have it too, with Tinnitus as well, but the Doctor should send you to ENT for a better consultation, they would be able to give you more tests, good luck, go back to your Doctor, ask him to refer you,

Anne

[Cezza2020 in reply to T-shirts]

Thanks Anne. I’ll get back in touch with them and ask for the referral. I’ve got some new pillows on the way to help with any potential neck tension, using sound apps to help distract at bed time, so I am doing my bit to live with it, but would like that extra bit of advice from them and at least some routine checks done.

[T-shirts in reply to Cezza2020]

Hi Cezza,

Yes think it's the best thing you can do, as they're more expert at diagnosis than GP, good luck, I hope you get all the help you need, take care, X

Anne

[Dusty1947]

Like you I was being driven crazy by severe tinnitus. My GP referred me to an ENT specialist who will tell you that there is no medical cure for tinnitus. The specialist that I saw gave me the option of have a head MRI scan to check for internal anomalies. I took up the option and found that my inner head was perfectly normal. It is very rare for there to be an underlying medical reason for tinnitus. The way I deal with tinnitus is to convince myself that the noise, whilst irritating is not dangerous and ignore the noise and concentrate on something else. I have decided that the noise has no right to be an important factor of my life and treat it as insignificant. I am not a doctor or any other type of medical practitioner but firmly convinced that I can control my own mind to the extent that I can control the apparent tinnitus discomfort. Sounds like mumble jumbo I know but it worked for me. Chris.

[Cezza2020 in reply to Dusty1947]

Hi Chris, I don’t honestly mind if there’s no cure, I can live with that and learn to manage it and deal with it, but as long as that definitely is the case that there’s nothing underlying.

I think I will look for a referral to be on the safe side, once the covid storm has passed.

[meggiemog]

Hi!

Just a heads up for you - ENT department at my hospital is totally closed due to covid-19 . A lot of ENT staff are actually working in the covid-19 wards as they already have the skills to tube people up. I am waiting for an appointment with them and will be lucky if I see someone within 6 months. There is no harm asking for a referral - but you will have to wait. This is may be why your GP asked you to watch You Tube.

[Cezza2020 in reply to meggiemog]

Thanks meggiemog - happy to wait until this is all passed.

[Bridgettt]

Hi you need to be referred to a vascular consultant not ENT. If it’s pulsatile tinnitus then they look at things very differently. There is nothing wrong with your ears. Also a really good website is wooshers.com

Mr Axon in addensbrook hospital is also an expert on pulsatile tinnitus

[JEHSPORT]

Pulsatile tinnitus is not the same as tinnitus. There is no cure for tinnitus yet, just coping strategies. Some of these can help you cope with pulsatile tinnitus but there is usually an underlying cause, often vascular and requires a full work up to determine the actual reason. PT is often described as like hearing a heartbeat on an ultrasound. Sometimes that sound can be reduced by pressing on certain areas in the neck but this is not a long-term option. Sometimes it can be heard by medics using a stethoscope.

Unfortunate many GPs and many ENTs do not understand the difference between tinnitus and PT and will fob you off with the coping strategies when a full work up is required. At best they may send you for an MRI which will come back as normal. What you need is an MRA and a doctor who understands PT and its causes.

As mentioned elsewhere Mr Axon at Addenbrookes is one of, if not the, leading specialist for this condition. You can request a referral from your GP- that is your right to choose where you are referred under the NHS. However current situation may cause difficulties with this.

To get the most out of your appointments either with GP or elsewhere, educate yourself on PT. There is some information on the BTA website but another called Whooshers which also has a very active Facebook page. It is American-run but you will find more Brits on there now. Only use trusted sources- Drs don't like you quoting from the internet!!

Remember that PT is only a symptom of something else that is going on. A full work up is needed to determine what that is.

If you want my story I have posted this before but briefly GP excellent, ENT bad, referral to Mr Axon awesome!

I had a Davf embolised a year ago, PT disappeared immediately. 2 further operations for stenting. First noticed PT may 2017, embolisation April 2019. It was a long hard journey and a battle I didn't think I would win until I sat in front of Mr Axon.

Do not be fobbed off, be your own advocate. Good luck!

[Cezza2020]

That’s brilliant, thanks JEHSPORT. I will do some more research and go back to the GP when I’m able to get a face to face appointment. The rain noise app will help distract for the time being!

[Wringing1212]

I have had high pitches T for many years but last year got a few bouts with a thumping pulsatile T that would come and go with blood pressure. I had a brain scan, epidural, physical theoropy, the works. Your case sounds like something that could merit screening but it also may go away on its own if you take it easy. That's what I did on the advice of three different neurologists.

Best wishes for you. I hope you soon get past this.