Pulsatile Tinnitus Query.

[Phychos]

I have pulsatile tinnitus 24/7. Was referred to a hospital Doctor from my own surgery for an assessment. Taken the hearing test and all ok. With it being "pulsatile" should I have undergone further tests? The Doctor said "tinnitus can pulsate sometimes but there is nothing to be done; no surgery or medication". I feel I did not receive the investigations needed. Do I leave it at that. Are my efforts going to be fruitless if I go back to my surgery?

[Maxi80]

Was it an ENT specialist that you saw?

[Phychos in reply to Maxi80]

Hello Max80. Thank you for your reply. Yes. It was an ENT specialist I saw. And I initially accepted their comments. However, after seeking some form of alternative "treatment" and finding the article on pulsatile tinnitus within the societies logs, I am beginning to question if I attained a professional diagnosis.

[TinnitusandAye]

Do you have FB? There is a group on there called ’Pusatile Tinnitus ’’Whoosers’’ Unite! - so useful and helpful

Otherwise, ’whooshers.com’

[Phychos in reply to TinnitusandAye]

Thank you for your reply. Not sure what FB is! Everything is easy to understand once you are into the system of things but "FB" could mean anything to me!! Thanks anyway. I will check out those groups. Have a nice day.

[TinnitusandAye in reply to Phychos]

So sorry, Facebook 🤣 I should have written it like that to begin with.

[Phychos in reply to TinnitusandAye]

Thank you for this. It was one of my thoughts but not sure. Take care.

[rabbits65]

I had an mri scan done and a ct scan to check everything out. Would have thought they should have done the same for you.Good luck

[Phychos in reply to rabbits65]

Hi. Yes. That is what I thought should have happened after reading the societies notes. Thanks. Will look into this more.

[rabbits65 in reply to Phychos]

Good luck . They say it’s to check there’s nothing structural going on . Mine came back clear .

[Phychos in reply to rabbits65]

Thanks for your help.

[hrl21]

Are you in Britain? Two specialists In Pulsatile tinnitus are Dr. Axon in Cambridge and Prof. Skakeel Saeed in London. The cause of PT is often able to be diagnosed and treated if patient finds the right specialist which can be challenging because not many doctors have a lot of experience/knowledge about PT.

[Phychos in reply to hrl21]

Yes. I am in Britain. Details noted and logged. I will be looking into this more deeply. Thank you for your help.

[daverussell]

The ENT examination is to determine whether there is any underlying serious issues (By the way, I don't claim to be an expert)

From the BTA website - "The main reason for requesting an MRI is to exclude a very rare condition called vestibular Schwannoma (also known as an acoustic neuroma) which is a benign growth on the balance nerve. Occasionally balance tests, electrophysiological tests or oto-acoustic emissions may be performed." - tinnitus.org.uk/tinnitus-se...

tinnitus.org.uk/faqs/acoust...

An MRI, or even an ENT appointment, is not necessary if your tinnitus can be explained as a result of hearing loss for example - although it gives you peace of mind. In short, beyond a series of checks to rule out anything, such as acoustic neuroma, the ENT specialists job is done.

For my appointment, the specialist discussed my symptoms, history and checked my balance, then concluded hearing loss. There was no need for an MRI. He knew I already had hearing aids and I explained strategies I was using, which is mainly sound therapy and positive thinking. He said I was doing all the right things and there wasn't anything more he could do, but he asked if I would like him to refer me to an audiologist. I accepted although I knew there was probably little they could do.

The follow up with an audiologist was to talk about other strategies, but again they said I was already doing all the right things. The next step they suggested might be therapy, but I said I'd see how I got on. What was most useful was that she went through my results from the ENT appointment and explained why my hearing loss was causing my Tinnitus and Hyperacusis. I'm a strong believer that the more you understand your condition, the easier it is to cope. As the old saying goes, "keep your friends close and your enemies closer."

Did they offer you a referral to an audiologist appountment? If not I would definately suggest asking.

I think there are high expectation from an ENT appointment, but the reality is that if surgery is not required then they can't do anything else other than refer you to an audiologist or therapist for CBT or whatever else might be required or useful.

[Phychos in reply to daverussell]

Thank you for your in depth reply. It's been very informative. I do feel I was cut short with any explanations from the ENT specialist and I will be taking this up with my GP who referred me in the first place. I think the process has to start again with going back to my own practice and making further comments about what I have learned over the last few days. Your reply has certainly been useful and I think I am now well armed to discuss things a little seriously with them. Thanks again.

[daverussell in reply to Phychos]

Getting back to your GP will be a good idea. I do not pertain to be an expert and stress that my advise and information is given on an as-is basis and based on my own experience. They'll be in a good place too to make any further referrals or treatment. All the best.

[Phychos in reply to daverussell]

Thank you for your help.

[Smmmm in reply to daverussell]

Would you mind sharing what the audiologist said regarding why your hearing loss was causing my Tinnitus and Hyperacusis?

[daverussell in reply to Smmmm]

I'm sure I cannot explain it as eloquently or as technically correct as she did, but I'll have a go. In fact, I will have to add my own take on it from other information I've gained from other sources.

The conclusion from my appointment was a result of a hearing and tympanometry test which were carried out by an audiologist before I saw the specialist. The tests the ENT guy did only really ruled out whether my occasional experiences of vertigo were not related to anything more serious. As I think I said before, they didn't think an MRI was necessary, although, I'm sure if there was any uncertainty they would have sent me for an MRI.

In answer to your question, they are related and are a cause and correlation of hearing loss, but also linked to my history of hearing problems and an operation I had to fit grommets in my ears when I was younger. In fact, all the audiologists and the ENT guy I've seen (well the three of them) have been a very quick comment on the obvious scarring left behind.

Tinnitus

In terms of explaining why I have tinnitus, my hearing test during the appointment showed I have hearing loss in the high- and low-frequency range. However, incidentally, my mid-range frequencies are fine - but this is unusual apparently.

As tinnitus is (or can be) the brain compensating for lack of noise travelling from the ear up the auditory nerve and to the brain. In other words, filling the gaps, I get a high pitched squeal and low droning humming noise; this correlates to the results and they concluded my hearing loss is the cause of my tinnitus.

Stress and anxiety

The stress that we all seem to experience, or have experienced at some point and may seem irrational, is the primordial brain wanting to use our hearing to make us alert to danger. I suppose this might be the same reason that many people seem to be afraid of the dark - that is as we cannot hear or see any potential danger, so our primordial brain or limbic system triggers an automatic fight-or-flight response.

Hyperacusis

During the hearing test appointment, I had a Tympanometry test. This is where they test the pressure in the middle ear and response to air pressure - as it does when receiving sound waves. My ear doesn't respond well to the pressure. Along with a history of having grommets fitted when I was younger, she was able to explain why I have Hyperacusis.

As a result of the grommets, I have scarring on my eardrums, so they are not as flexible or responsive. So, over time the muscles are not used as much, so they are weak and have become weaker. This means that the muscles that control the malleus, incus, and stapes, are not able to act or respond to noises - especially loud noises - coming into the ear. In other words, when we hear a loud noise the muscles should tense and prevent further vibration of the eardrum and stop the noise from entering further into the ear.

[Happyrosie in reply to daverussell]

Dave Russell your posts are always well-thought through and useful, your remarks in this thread were exceptionally so. Thank you.

[rabbits65 in reply to daverussell]

Hi daverussell I like your post and your information .I too had high expectations from the ent clinic , I paid privately to see a specialist quickly and was very disappointed that I didn’t get as much help and information as I expected. It’s true what you say that the more information we can get the easier it makes it for us to understand. I really wish that doctors or scientists did a little more research and also that the specialists could improve on their bedside manner. This is an awful condition to live with. My tinnitus is quite severe, some people have tinnitus in a mild form . I would love to find out more , sometimes it can be on the borders of being frightening . I keep thinking , surely I must have more than just tinnitus . It’s not nice . I’ve had my trouble 10 months . Early days perhaps .

From Penny. rabbits65

[daverussell in reply to rabbits65]

In a recent study, they concluded that given the varied causes and our different responses to tinnitus, more subcategories are needed. But they also went on to say that recruitment is an issue and that there are simply not enough specialists to carry out the number of further studies required to do this. At least in the short term anyway. Sorry, I don't appear to have a reference to it, but it was an interesting read - well I thought so anyway :).

Well, we do need clever people like that, but unfortunately, a bedside manner doesn't come always come hand-in-hand with a brain of that capacity. What's that saying? "We can't live with them and we'd probably be worse off without them."

[rabbits65 in reply to daverussell]

Thank you so much for your interesting words. I wish I had the brains to study tinnitus myself and whatever is causing this horrendous noise .

[Phychos in reply to rabbits65]

I know where you are coming from. My experience is like sitting on the runway at an airport right next to a jet taking off. Very noisy 24/7. Don't get any relief at all. Some times I just want to take my head off. Fortunately, I do sleep ok as I am tired out at midnight. Take care and I hope you find relief at some point.

[rabbits65 in reply to Phychos]

Thanks so much for replying . Mine feels like a roaring fan oven going on in my head . People talk about ringing , buzzing whooshing but what going through is so heavy and noisy. Thanks for explaining what your going through too. It is some comfort to me to realise I’m not alone.

[daverussell in reply to Phychos]

Phychos I totally relate to that

[Gwynydd in reply to daverussell]

But their job is not done. I had all the checks done two years ago. My pulsatile tinnitus was only at night. My consultant who was excellent took one look at me and said I was wonky. It was my teeth. I saw the dentist and they found a chronic abscess on one of my teeth and my jaw was not in alignment. I was probably grinding my teeth due to stress at my husbands ongoing cancer treatment. The tooth was removed and I retrained my jaw. The noise stopped completely eighteen months ago. There can be other reasons. I am elderly and I have some hearing loss in certain pitches. I have rhinitis which can make my right ear feel blocked but I use mometazone which helps. I wish you well.

[Happyrosie in reply to Gwynydd]

Wow Gwynedd that’s an interesting diagnosis!

[Gwynydd in reply to Happyrosie]

Not just interesting but correct. I knew that habituating was not the solution. I also knew that my symptoms did not fit exactly with what others experienced. During the early days it all suddenly stopped for a whole month. I still believe following a virus my eustachian tube felt blocked and so steam and inhalations also helped. Rhinitis is still a problem. I have hearing loss at certain pitches but hearing aids would not help. I see someone privately and he ensures my ears are clear. He also suggests I use steam and inhalations when necessary. I do believe that we are all different in this area and I wish you all the very best.

[daverussell in reply to Gwynydd]

Well I suppose not, but if there isn't anything serious then other that for referrals, such as back to your doctor, an audiologist or your dentist in your case.

[ChooseYourUsername in reply to daverussell]

I think the ENT investigations for pulsatile tinnitus are ( or should be ) more in depth than you have described :

tinnitus.org.uk/pulsatile-t...

[daverussell in reply to ChooseYourUsername]

I don't disagree. I'm refering much to my own experience and understanding. I'm sure the investigation will take a route that is tailored to the individual, though the main purpose is to rule out anything serious. That's not to say they can't/won't do more or that to he journey ends at the ENT. However, on the NHS at least, the reality is that resources are at best limited and required for more urgent cases if there is nothing serious. So unfortunately, they are not going to be forthcoming about everything they can do. Indeed, if the best course of action is self-help, which it probably is for most, then maybe they doing what's best. So even paying for private ENT I don't what would be different (then again if you have the cash to splash they'll happily give you the time and attention). Again it's down to individual cases, and individually, we may have pursue further help, by asking the ENT specialist or returning to our GP... along the lines of, "I'm struggling to cope. What are the next steps for me?" (in a calm and polite manner, of course).

[Lulu_Lollipop]

I was referred by my GP to an ENT consultant to check out my tinnitus. Took several months before I was seen. My hearing was declared perfect and there were no blockages or anything, but the ENT man referred me for a brain scan just to rule out that thing mentioned above. Unexpectedly that scan revealed a very large brain aneurysm that was in no way connected to the tinnitus. Six months later I had a craniotomy and the aneurysm was clipped. Took 2 years to get back as normal as I could after the op, but the tinnitus remained. Then the summer before last I had a stroke. None of these things connected and the tinnitus is still here. Do make sure you are investigated. I wish you all the best.

[daverussell in reply to Lulu_Lollipop]

Wow! I hope everything is well wish you now. Shame you are suffering with Tinnitus.

I had a similar experience. I only went to the doctor about a particularly bothersome trapped nerve. He asked me about a mole on my neck that he thought was suspious; it turned out to be malignant. Very early stages so I was lucky.

All the best with you I hope everything is well with you.

[Lulu_Lollipop in reply to daverussell]

Phew, eh? Thank goodness for some on-the-ball doctors. Hope you are doing well xx