Pulsatile tinnitus

[Fatiguegirl]

Hey,

I am a 20 year old girl who has been suffering from Pulsatile tinnitus for over 5 years on the left side of my head/ear. The tinnitus tends to get worse when laying down and at night time and tends to get more quite when my neck under my left ear is pressed.

I have had a MRI and CT scan done about 3 years ago, nothing was found.

I also am anaemic with iron deficiency. My anaemia is irregular which means the tinnitus is not a cause of anaemia.

Every GP and Doctor i have spoken to tells me that its their first time of hearing about my condition, i came here looking for help and maybe someone else suffering from the same condition.

Thanks for reading, hope to hear from all of you soon!

[Ruby1312]

I am sorry I can't offer you any help but I understand what you are going through.

I'm 33 and have had pulsatile tinnitus for about 3 years now ,it came on a few months after giving birth . I had a CT scan last February which came back normal. I struggle terribly with anxiety and I too am so unsure what to do next , should I push to find answers or just learn to live with it . I had my second child 6 months ago and it all seems much worse now , I also have iron deficiency that fluctuates . Can I ask if yours is worse when your iron is low? I hope someone can help you and out your mind at rest.

[Fatiguegirl in reply to Ruby1312]

Heya, I am sorry to hear that you are going through the same condition as mine.

Yes I definitely think it gets worse when I do not take my iron tablets, but I don't think it is pulsating because of my iron deficiency... Does that make sense?

I hope someone can help both of us and others that seek help.

[DownUnderInAus]

Hi Fatigue girl,

I too have PT in my left ear (1 year now), and like you I have been to many doctors who have "no idea" as to what may be causing this.

I've had MRI scans, CT scans, Ultrasound scans, hearing tests etc, which don't reveal anything.

I also find the PT gets worse when I am laying down, especially if I am laying on my right side. If I lie flat on my back without a pillow the PT disappears. I'm not really aware of the sound during the day as the background noise blocks it out.

My PT sounds exactly like a heartbeat, most people report a whoosh. Could you please tell me what yours sounds like?

Thanks

Downunder

[Fatiguegirl in reply to DownUnderInAus]

Hey,

Your situation describes mine perfectly, it's like you took the words from my mind. Sleeping on my right side is the worst, I love myself a high pillow but that hasn't been possible for a few years now. Me being a light sleeper is actually the worst, ever since I was young a small friction of light or sound would wake me up.

My PT sounds like a heartbeat and a whoosh at the same time. Its kind of similar to the sound of a ultrasound.

Thanks for your reply,

F

[RobertCLL]

I have had PT for a few years now along with all the tests, but nothing found. Several years ago when I was on chemo and my HB was low (around 10) I had a bout of PT. You mentioned you were anaemic, just a thought, have you had your HB checked recently?

[Fatiguegirl in reply to RobertCLL]

Hey, no I haven't had my HB levels checked I think, I will contact my GP and ask if it is showing on my recent blood test or not.

[Hidden]

Hi. I'm 48 and have had PT a year now. The Gp thinks it was shock that brought this on. I had a hemiplgic migraine and it terrified me he said this fright can sometimes trigger tinnitus?? I'm not sure if this is true.

He said it will never go and the sooner l come to terms with it the easier it will be.

This was hard to take but as its my heartbeat I find it soothing and it helps me fall asleep. All my tests were also negative.

I find my hearing has dropped a little but l cope it just drives family mad.

Again though only in my left ear.

I hope it becomes more manageable for you soon

C x

[DownUnderInAus in reply to Hidden]

Hi, Just a quick couple of questions, does your PT sound like a heartbeat (mine isn't a whoosh), does laying down make it worse, does moving your neck around make it louder? Fortunately, I only hear mine when it's quiet, like in bed or sitting reading. I sometimes wonder if my brain has picked up on the sound of the normal blood flow close to my inner ear and wont "tune out" to this sound? Thanks

[Hidden in reply to DownUnderInAus]

I hear it when it's quiet but it's there 247. It's worse at night but it doesn't bother me now.

It's a high pitch noise but beats in time to my pulse. If l place my fingers on my wrist it pulses exactly the same as my heart beat. Exercise makes it worse as does anxiety,louder too.

It's a strange sensation. My husband has normal tinnitus in both ears and that drives him mad l am glad it's just one ear for me

[JEHSPORT]

Sadly, many medics do not understand PT and often try to treat it as normal tinnitus. I developed PT in May 2017. The first GP said "how interesting", my usual GP knew exactly what it was and has been brilliant all the way through.

First test was MRI to rule out nasties, tumours etc. Then it had to be referral to ENT for MRA which showed a dural arteriovenous fistula (Davf). ENT were terrible and actually gave me dangerous advice.

Through the power of social media I found a consultant who is one, if not the leading expert on PT. Mr Axon at Addenbrookes, Cambridge.

My GP referred me - you have the right to be referred under NHS to a suitable consultant even out of area. ENT lost me 4 months and caused me untold stress & tears (which of course made the PT worse).

My first consultation with Mr Axon was awesome & I left in tears but this time from sheer relief that he knew exactly what it was and how to treat it. A CTv was followed by cerebral angiogram which resulted in embolisation of the Davf. The PT disappeared immediately.

I had to have 2 more operations for further stenting. I wont lie, it has been a long and hard journey - over 14hrs of operations, 2 cerebral angiograms, lots of headaches and lack of energy. In fact it was almost a year after my first operation that I felt I had turned a corner - this wasn't due to the Davf but the need for further stenting as I have narrow venous drainage and also "an unusual anatomy" in my head, apparently!

If I have learnt anything on this journey it is that PT is not tinnitus; that there is usually a reason for it, often vascular; that medics don't understand it and that you have to fight and advocate for yourself all the way along.

This BTA site plus Whooshers on Facebook are brilliant at bringing fellow sufferers together. You are not alone.

I have other posts on here if you want to search for more info.

Take care.