Hello All

[RosiesEar]

Hi Everyone, My name is Rosie and I am from the UK
I was diagnosed with Pulsatile Tinnitus earlier in the year, but I've had it for around two years.

This is my story so far:
I had terrible trouble getting doctors to take me seriously at first, they just told me to listen to music all the time - which is impossible and unfair. I am a lover of silence, but I can't even read books at all without a pulsing squelching noise in my ear. It is ridiculously hard to concentrate. I finally got referred to hospital, in which I was given an MRI scan to check my head - but unfortunately I had a panic attack inside and had to come out (I (likely) have hyperacusis - loud noise physically hurts) but they said the scan showed no problems inside my head. I even played them a recording of the sound, taken with a phone outside my ear - my whole family have heard the sound coming from my right ear when our ears are put together. I am now told I am going to have tinnitus retraining therapy to get me to ignore the sound (a sound OTHER people can hear) but I have heard that it will not work.
What's everyone's opinion? I am going to get referred to another hospital for others doctors opinions as this is getting out of hand - I've read a couple of articles on Whooshers.com and in the Mail that Addenbrookes have surgeons that are more willing to take it seriously and have had success in finding the problems with various peoples whooshing.
I feel terrible, I know there are worse things in the world, but surely this is curable?

Thanks - Any information or opinions I would be interested in!

Rosie

 

[TJPositive]

http://en.wikipedia.org/wiki/Tinnitus#Objective_tinnitus
It might be worth looking into some of the conditions mentioned there.

 

[Hopeful]

This guy (http://www.dailymail.co.uk/health/a...emailing-expert-3-000-miles-away-America.html) had, as you, objective pulsatile tinnitus.

 

[observer]

Hi Rosie,

My dad had pulastile tinnitus and was cured in about 5 weeks. They say pulastile T is usually caused by an ear problem other than high frequency hearing loss such as Eustachian Tube Dysfunction or an ear infection or inflammation of some kind and usually goes away once the underlying condition is taken care of.

A good ENT should be able to help. Lot of the ENTs are very "trigger happy" in prescribing drugs or surgery but the best in my opinion is the one who gives drugs when absolutely required. It helps to ask what would happen if you don't wanna take the prescribed medication. Also google every prescription before you even go to the pharmacy to get it filled.

Good luck,
Observer

 

[Hudson]

RosiesEar,

Luckily for you (I know it may not seem that way!) objective tinnitus is something that is often treatable. If others can hear your noise, there is definitely a physical cause of the tinnitus. Have you been to see an ENT about the fact that your tinnitus is objective?

 

[Molan]

Hello Rosie, I'm aware of at least one study showing pulsatile Tinnitus being cured through surgery. See below for details,


Sigmoid Sinus Diverticulum: A New Surgical Approach to the Correction of Pulsatile Tinnitus

Otto, Kristen J.*; Hudgins, Patricia A.†; Abdelkafy, Wael*‡; Mattox, Douglas E.*
Abstract
Objective: Tinnitus represents a bothersome symptom not infrequently encountered in an otology practice. Tinnitus can be the harbinger of identifiable middle or inner ear abnormality; but more frequently, tinnitus stands alone as a subjective symptom with no easy treatment. When a patient complains of tinnitus that is pulsatile in nature, a thorough workup is indicated to rule out vascular abnormality. We report of a new diagnostic finding and method of surgical correction for select patients with pulsatile tinnitus.

Study Design: Retrospective case series.

Setting: Tertiary care, academic referral center.

Patients: Among patients seen for complaints of unilateral or bilateral pulsatile tinnitus, five were identified with diverticula of the sigmoid sinus. All patients had normal in-office otoscopic, tympanometric, and audiometric evaluations. Patients with paragangliomas or benign intracranial hypertension were excluded. Auscultation of the pinna or mastoid revealed an audible bruit in most patients. All patients underwent computed tomographic angiography of the temporal bone. In all cases, this finding was on the side coincident with the tinnitus.
Intervention: Three of five patients underwent transmastoid reconstruction of the sigmoid sinus.

Main Outcome Measure: Patients were evaluated clinically for presence or absence of pulsatile tinnitus after reconstructive surgery.

Results: All patients electing surgical reconstruction had immediate and lasting resolution of the tinnitus.

Conclusion: Surgical reconstruction can provide lasting symptom relief for patients with pulsatile tinnitus and computed tomographic evidence of a sigmoid sinus diverticulum.

http://journals.lww.com/otology-neu...=2007&issue=01000&article=00009&type=abstract

 

[Karen]

Hi, Rosie,

I have pulsatile tinnitus, too. I've had it for over 3 years now, and have had MRI/MRA, CT scan, and Doppler of carotid artery. All showed nothing unusual. My pulsatile tinnitus is still there, but over the last several months, it has definitely gotten quieter, so I am hopeful that it may subside even more.

I certainly understand how you feel; it is SO hard to concentrate on anything with pulsatile tinnitus, and it is even harder to sleep! Are you able to sleep normally, and are you taking any sleep aids? I totally understand what you're going through, because I've been going through the same thing.

My pulsatile tinnitus, unlike yours, is subjective (no one can hear it but me) rather than objective (other people can hear it). Since you have objective PT, from what I've read, the condition is highly curable if a cause can be determined. Because of that, I would vote for going to another doctor (on Whooshers.com, they suggest a neurologist or neurotologist) who has experience with people who have this condition. It's possible that you might find a cause, and ultimately be cured! I've heard great things about Addenbrooks, too, from people on Whooshers.com.

I wish you success, and will be interested to hear what you decide to do.

 

[RosiesEar]

Thanks @TJPositive - Hope its not life threatening!

@Hopeful - That was one of the articles I've read - I've just emailed the Welsh MP that was connected with that article about talking to Ian Turner, as I think it would be beneficial. i really hope he replies!

@observer Thank you - So far they don't want to give me drugs or surgery - they want to give me therapy, which I dont think will work. I'm going to try it, but I dont hold my hopes up. I actually want them to CT scan me, or something further.

@Hudson - I've been to the ENT at Bury St Eds - I've played them my recording and all sorts - Got my family to say about them hearing it too, but nobody is willing to look into it further. They just want to give me therapy.

@Molan Thanks for the article, I'm not too good at understanding scientific things, Am I to understand that the patients had surgery and were cured?

@Karen I feel for you, Its an awful thing isn't it! What is Doppler of Carotid artery? I hope it subsides too - Mine is strange, It's not always the same pitch, pulse or anything. Sometimes it goes very quiet, but still faintly there and sometimes it's louder than anything else I can drown it out with. It screeches at me sometimes. When I move my head around, it makes different noises.
I sleep normally - I am often woken by it, but I have a musical pillow which I plug my Mp3 player into and kind of attempt to drown it out. I listen to a lot of piano music, so it doesn't have any lyrics in it so I don't feel like I am being constantly talked at.
I will see if I can speak to a Neurologist as well as an ENT because I imagine the Neurologist or Neurotoligst is more likely to help.
Thanks

Thanks everyone for your suggestions and help. I will mull what everyone has said over and see what I can do!

If you would like to hear my sound, here is is (ps, the clang sound is a bin lid and not my ear, the eeek eeek eeek noise is my ear)

 

[Molan]

@Molan Thanks for the article, I'm not too good at understanding scientific things, Am I to understand that the patients had surgery and were cured?

Yes that is correct, unfortunately that study was only effective for people with an anomaly of their temporal bone.

 

[Fish]

I had a weird thing that occured to me early this year. I had pulsatile tinnitus that always appeared in the evening and was gone once I woke up the next morning. It was clear, fairly loud 'whooosh, whoosh, whoosh...' in right ear. It was in sync to my heartbeat. Also, it would get louder when I lied down and get slightly better when standing up. It lasted around 3-4 months (I don't remember) and now it's completely gone. But I didn't do anything really to treat it or find the cause of it.

 

[Karen]

Fish,
I've heard of other people who had that same phenomenon; they had pulsatile tinnitus for several months, with no known cause. Then, it just disappeared. I'm glad that happened for you, and maybe that will happen for others, as well.

Rosie,
A Doppler of the carotid artery is a simple test that is used to determine if there is any blockage of the carotid artery, which for some people can cause pulsatile tinnitus. Mine was normal and unremarkable.

I wish you well, and will be interested to hear what happens when you go to the ENT and/or neurologist. Usually, people who have objective PT have a better chance of a diagnosis and cure. I hope you find a good doctor who will help you!

 

[RosiesEar]

@Fish My mum gets that, occasionally in the evenings. I think it may be stress related for her.

@Karen Okay, perhaps I shall inquire about that too. Will let you all know what happens. Knowledge is power as they say. thank you

 

[JustAName]

Hey Rosie

First of all I hope you are making better. I'm a new member also, with pulsatile tinnitus.

I can also hear my pulsatile tinnitus with stethoscope, so it's objective (I put stethoscope on my right ear, listened with my left ear). I didn't get any test except a hearing test yet.

 

[Laura89]

Hey guys, so I belong to the whooshers FB support group and many people have found the cause and had treatment. Recently I spoke to a fellow canadian woman who was cured last year, the way she explained it to me is that she had a temporal bone defect and as the years went by the bone became thinner and thinner to the point where she was able to hear the blood flow in addition to other symptoms like a vibration type of feeling on that side of her head. After 2 years and endless medical visits, she finds a doc who can help and sees the defect on her CT/CTA scans, other docs did not see it... so she goes for surgery and boom, she's 95% fixed, only hears it in very weird positions if even.

So theres a lot of hope for people with PT, its just a matter of finding the right docs who will do an extensive search.

Mine sounds like this:

http://www.whooshers.com/sitebuildercontent/sitebuilderfiles/jessica.wav

Good luck!

 

[billy43]

hi Rosie.im also battling PT.7 months now.some good days some bad.but at least im able to sleep whitch wasn't the case the first four months.theres hope in your case.objective PT is much more curable.mine is subjective so I have taken a break on any more test and just trying to deal with it one day at a time.you should keep pursuing it.hopefully you will find the right doctor.good luck. thanks billy43

 

[Karen]

Hi, Billie,

I also have subjective pulsatile tinnitus, and have taken a break from tests and doctors for the time being. I've had PT for almost 4 years now --- it started in early June 2010. The tests I've had came back negative, and I have been reluctant to keep having more tests and being exposed to additional radiation, not to mention the frustration involved.

I wish all of us with PT success in either finding a cause, and possible cure, or learning how to cope with it to the best of our ability.

Stay strong, and let's cheer each other on!

Best wishes,
Karen

 

[Laura89]

Hey Karen, maybe you already mentioned it before, but what tests did you have? and which drs saw you?

 

[Karen]

Hi, @Laura89,

The tests I've had include: CT scan, MRI/MRA (with contrast), carotid Doppler. I've tried hearing aids, too, since I have some hearing loss in the affected ear, but the hearing aids amplified the pulsating, so I gave up on those.

I've been seen by, let's see.... Two ENT's, three neurotologists, and two audiologists, plus my general practitioners. The ENT's and neurotologists said I have conductive hearing loss, which suggests otosclerosis, and more than one thought I could benefit from having a stapedectomy. My husband and I have discussed that operation at length, and I decided to not have the operation, since I've heard that sometimes it doesn't work, and makes the ringing worse. I have both ringing AND pulsating in my right ear.

I have also tried alternative treatments, such as chiropractic, cranio-sacral therapy, and acupuncture. So far, the things that have worked best are giving it time, getting enough sleep, healthy diet, exercise, and distraction. I had some hearing loss and mild tinnitus (regular tinnitus) before this started. It started immediately after I took a blood pressure drug for the first time, so I'm pretty sure it is related to that.

Thanks for asking!