If You Have Pulsatile Tinnitus, Here's the First Thing You Need to Do to Get Answers and a Diagnosis

[tiniturtle]

I've been reading through these threads and there is lots of speculation about what the causes are, guesses, misinformation, etc. A lot of people going in circles. Pulsatile tinnitus is not tinnitus. Pulsatile tinnitus is a rhythmical noise that is synchronous with the patient's heartbeat. Most of the time this can be diagnosed and treated, but an ENT, audiologist, or primary doctor cannot diagnose this or know what to look for. You need to go to a specialist in a city or university hospital.

You need an MRA, and a radiologist that knows what to look for. MRI and CT are not sufficient. The type of specialist you need to consult with is a neuro-interventional radiologist. Pulsatile tinnitus is caused by a vascular issue most of the time. It isn't always dangerous, but sometimes it is. These types of doctors will usually very easily identify the cause of your PT.

Why should you listen to me? I went to ENT and audiology first. They said my PT was "just my tinnitus". This led to a long delay in diagnosis. I had an MRA, and it indicated a dural arteriovenous fistula. It was confirmed on follow up cerebral angiogram. If I had not had it treated early, it would have led to an intracranial hemorrhage (a stroke). With minimally invasive treatment, the fistula was cured, and the PT disappeared along with it. I've had this happen to me twice, and I've needed a total of 3 procedures.

Unlike regular tinnitus, the cause of pulsatile tinnitus can very often be identified and treated. They are not similar and related in any way, and have very different causes and mechanism of action. They should not be lumped together. If you have these symptoms after a head injury, it's even more indicative that you should get this checked out as soon as possible.

Send me a message if anyone has questions or needs recommendations for a doctor or hospital. I don't want to post them directly in a public thread out of respect.

Information:

whooshers.com

neuroangio.org

 

[tiniturtle]

I hope this is useful to someone.

 

[Ian Mc]

Hi tiniturtle, can you please tell me what your pulsatile tinnitus sounded like, how frequent it was etc. I'm scheduled for a contrast MRA in the next week or so, my pulsatile tinnitus isn't all that bad and generally can only be heard when I'm in bed or in a very very quiet room.

 

[tiniturtle]

Hi tiniturtle, can you please tell me what your pulsatile tinnitus sounded like, how frequent it was etc. I'm scheduled for a contrast MRA in the next week or so, my pulsatile tinnitus isn't all that bad and generally can only be heard when I'm in bed or in a very very quiet room.

I didn't always hear it. Generally the nature of pulsatile tinnitus is that it changes, sometimes it's very loud, sometimes you don't hear it, sometimes it's faint. It can vary by the positioning of your head, etc. I'm glad you're getting it checked out. My surgeons have told me that the severity of the pulsatile tinnitus isn't tied to the severity of a potential vascular issue. It can be loud and benign, or faint, or gone, and still be life-threatening. In summary, any time you have pulsatile tinnitus for more than a few weeks, the cause should be investigated. Let me know how you make out.

 

[Lilah]

I didn't always hear it. Generally the nature of pulsatile tinnitus is that it changes, sometimes it's very loud, sometimes you don't hear it, sometimes it's faint. It can vary by the positioning of your head, etc. I'm glad you're getting it checked out. My surgeons have told me that the severity of the pulsatile tinnitus isn't tied to the severity of a potential vascular issue. It can be loud and benign, or faint, or gone, and still be life-threatening. In summary, any time you have pulsatile tinnitus for more than a few weeks, the cause should be investigated. Let me know how you make out.

Is your pulsatile tinnitus the whoosh, thump, or high pitch kind? Thanks.

 

[tiniturtle]

Is your pulsatile tinnitus the whoosh, thump, or high pitch kind? Thanks.

It's been all of the above, it changed and varied. There was also a low rumble like hearing a car engine running outside. My pulsatile tinnitus was cured with surgery, but before this I also have general tinnitus caused by a drug. That I still have and probably won't go away, but it's gotten better. They are completely separate.

 

[Deniseh]

@tiniturtle

That's interesting!!!

Would I just go to my doctor to get it confirmed or a specialist???
If confirmed can it be fixed???

Tried to google this but not much info

 

[tiniturtle]

@tiniturtle

That's interesting!!!

Would I just go to my doctor to get it confirmed or a specialist???
If confirmed can it be fixed???

Tried to google this but not much info

http://neuroangio.org/diagnosis-and-treatment-of-pulsatile-tinnitus/

Most cases can be treated and cured. Somewhere in the range of 20% they can't find the cause, and it's benign. Read my full original post. You should consult with a neuro interventional radiologist. They are the doctors that treat strokes, aneurysms, cerebrovascular issues in general. Find a hospital that has a cerebrovascular department.

 

[Lisa Harrington]

I have both pulsatile tinnitus and somatic tinnitus. It's pulsatile whenever my heart rate is elevated (or in the morning after I first wake up... for the first hour or so of the day). Otherwise, it's somatic throughout the day. I can change the sound by tensing my throat (like you're drinking water) on my left ear. Or I can increase the pitch and volume by moving my neck back to the left (right ear goes up) or back and to the right (left ear goes up).

Should I explore pulsatile tinnitus even though it doesn't consistently (24/7) track with my heartbeat?

 

[tiniturtle]

I have both pulsatile tinnitus and somatic tinnitus. It's pulsatile whenever my heart rate is elevated (or in the morning after I first wake up... for the first hour or so of the day). Otherwise, it's somatic throughout the day. I can change the sound by tensing my throat (like you're drinking water) on my left ear. Or I can increase the pitch and volume by moving my neck back to the left (right ear goes up) or back and to the right (left ear goes up).

Should I explore pulsatile tinnitus even though it doesn't consistently (24/7) track with my heartbeat?

Yes, it should never be ignored.

 

[Lilah]

@tiniturtle @Lulu187 do you have somatic tinnitus as well?

 

[tiniturtle]

@tiniturtle @Lulu187 do you have somatic tinnitus as well?

I have general ringing tinnitus. That is completely separate and has a different cause. They are almost never related. My PT was cured, the ringing I still have.

 

[Lisa Harrington]

Yes, it should never be ignored.

Hey thanks for responding I think I found one in my area (Boston). What do I insist that he does -- an MRA at the minimum? Really appreciate this information!

 

[tiniturtle]

Hey thanks for responding I think I found one in my area (Boston). What do I insist that he does -- an MRA at the minimum? Really appreciate this information!

An MRA at the minimum. Mass General has some good doctors. I know of Aman Patel and James Rabinov.

 

[vttbx]

It is relatively simple. The problem is most doctors don't order the right imaging studies or know which ones to order. If an MRA will usually indicate something, if it doesn't, MRV almost always does, if it's venous.

What kind of doctor can order an MRA? Is it as loud as an MRI?

 

[tiniturtle]

What kind of doctor can order an MRA? Is it as loud as an MRI?

Yes, the process is exactly the same. It just focuses on the arterial structure. Any doctor can order an MRA. But you want it evaluated by someone that knows what to look for.

 

[tiniturtle]

Upon my 6 month follow up angiogram, they found two more small dural arteriovenous fistula. They fixed them at the same time. This makes 4 total in less than 2 years.

 

[Steph1710]

Hi @tiniturtle

I have normal tinnitus unfortunately, but I also have pulsatile tinnitus. You're totally right. THE TWO ARE NOT THE SAME!!! My pulsatile tinnitus is due to a narrowed artery in my neck (left side) and ICP. Both of which are being treated through a lumber puncture and a stent. It took me two years for anyone to believe there was an issue. But I researched it, and fought tooth and nail to have it sorted. My operation date was due in March but because of the lockdown, it has been postponed to July.

I urge anyone with pulsatile tinnitus (I hate even calling it a form of tinnitus) to check their symptoms and demand to see a neurological doctor to have it sorted because unlike regular tinnitus, there is often a treatable cause.

If you have a narrowed artery, like me, for example - the sound should stop if you move or press on the side of your neck. For me it's the left side. This means there a problem with the blood flow.

All I can say is you're lucky if you have only pulsatile tinnitus. Four weeks ago I developed normal tinnitus as well and I know that as of yet, there is no cure for the latter. So for all you PT sufferes only, there is hope yet.

Good luck everyone!

 

[galacticdaisy]

Hey there,

First, I wanted to thank you for all of the information you've posted here, it's been extremely helpful and appreciated. I just joined today.

I've had pulsatile tinnitus for a couple of months now in my right ear, along with headaches on the right side of my head (specifically the back of my head). The symptoms have gotten worse since onset. It's a low frequency sound, that's constant/nonstop. I found a sound similar to what I'm experiencing on whooshers.com.

If I bear down or turn my head completely to the left (opposite of the symptomatic ear), the whooshing sound gets much louder/worse. If I push in on my neck (what I believe in my jugular) or turn my head completely to the right, the sound completely stops.

I'm in the Dallas area of Texas, just wanted to see if you had any recommendations of a neuro-interventional radiologist, etc.

I've seen an ENT who sent me to the ER when the symptoms started getting worse. They did a Limited Brain MRI w/o Contrast and an MRA Head w/o Contrast, CT Angio Head w&w/o Contrast, and a CT Head/Brain w/o Contrast. The reports don't have an explanation for my symptoms, which could be due to me needing different tests or a different doctor to read the scans.

Since there isn't an explanation of my symptoms there, she wants me to get a CT of my ear next.

 

[tiniturtle]

Hey there,

First, I wanted to thank you for all of the information you've posted here, it's been extremely helpful and appreciated. I just joined today.

I've had pulsatile tinnitus for a couple of months now in my right ear, along with headaches on the right side of my head (specifically the back of my head). The symptoms have gotten worse since onset. It's a low frequency sound, that's constant/nonstop. I found a sound similar to what I'm experiencing on whooshers.com.

If I bear down or turn my head completely to the left (opposite of the symptomatic ear), the whooshing sound gets much louder/worse. If I push in on my neck (what I believe in my jugular) or turn my head completely to the right, the sound completely stops.

I'm in the Dallas area of Texas, just wanted to see if you had any recommendations of a neuro-interventional radiologist, etc.

I've seen an ENT who sent me to the ER when the symptoms started getting worse. They did a Limited Brain MRI w/o Contrast and an MRA Head w/o Contrast, CT Angio Head w&w/o Contrast, and a CT Head/Brain w/o Contrast. The reports don't have an explanation for my symptoms, which could be due to me needing different tests or a different doctor to read the scans.

Since there isn't an explanation of my symptoms there, she wants me to get a CT of my ear next.

I'm unfamiliar with that area. A little research may find someone good.

It's encouraging that those studies didn't show anything, but sometimes they don't. An NIR may suggest a cerebral angiogram.

 

[Steph1710]

Just an update on my pulsatile tinnitus. I have now been given an exact diagnosis and I'm now placed on a waiting list to receive one out of the two operations which have been offered to me to relieve my symptoms.

If anyone has pulsatile tinnitus and they live in England, then you need to see Mr. Patrick Axon at Addenbrookes Cambridge - he is the only person who will help/operate in England for our condition.

 

[volsung37]

A very useful and interesting thread @tiniturtle.

I am in the UK and don't know any of the specialist radiologists you mention.

I have contracted severe pulsatile tinnitus following a COVID-19 vaccination in late November 2021.

At present my theory is that it is some kind of vascular inflammation from the vaccine which may reduce over time.

However, it would be good to know of any possible local or international sources of help should this not go away on its own.

Any help deeply appreciated.

 

[Steph1710]

I am in the UK and don't know any of the specialist radiologists you mention.

There is literally one guy you need to get to. His name is Mr. Patrick Axon at Addenbrookes hospital in Cambridge England. BUT, you have to go through loads of stages to even get to him. It's taken me 3 1/2 years.

 

[volsung37]

There is literally one guy you need to get to. His name is Mr. Patrick Axon at Addenbrookes hospital in Cambridge England. BUT, you have to go through loads of stages to even get to him. It's taken me 3 1/2 years.

Hi Steph.

I live in N Ireland but we have the same NHS as in England. I would be very pleased to meet this doctor. What are the stages you have to go through to see him?

 

[Steph1710]

Hi Steph.

I live in N Ireland but we have the same NHS as in England. I would be very pleased to meet this doctor. What are the stages you have to go through to see him?

Hi @volsung37.

Well, first you need your GP to refer you to the ENT department at Addenbrookes. Then if you're lucky enough to get a referral there, they will run some tests and try and find the cause of your pulsatile tinnitus. BUT, they will try and do everything not to sort it because it's the NHS, and unless you're dying, they won't really be interested... I'm sure you know how it goes.

It's taken me three and a half years to battle to see him. In that time I have been passed from pillar-to-post. Un-referred, told there is nothing wrong, sent to many different departments, and spoken to many people who hadn't a clue to why I was seeing them. I have had arguments, and written extensive complaints, and been on the phone for hours and hours... So good luck haha!

So, I should say that there is isn't any "stages", you just have to be prepared to fight to the bitter end for any help.

All the best,
Steph

 

[corvid100]

I have pulsatile tinnitus and trying to get an MRA to rule out anything serious. My doctor says Medicare won't cover it. So they just ordered a plain MRI.

Anyone out there with experience on what is needed to get Medicare to cover an MRA?

Thanks.

 

[Steph1710]

I have pulsatile tinnitus and trying to get an MRA to rule out anything serious.

To properly see the tiny little veins in your head/neck, you're better off having an angiogram with contrast dye. Sometimes it's the only way they will be able to find blockages/narrowing. A normal MRI will most likely show nothing.

Good luck!

 

[GoatSheep]

It's been all of the above, it changed and varied. There was also a low rumble like hearing a car engine running outside. My pulsatile tinnitus was cured with surgery, but before this I also have general tinnitus caused by a drug. That I still have and probably won't go away, but it's gotten better. They are completely separate.

Was the car engine running sound only in sync with your pulse? I have developed a sound like a generator running or a chainsaw in the distance, but it's constant. My heartbeat does seem to accentuate it when I'm in earplugs.

 

[tiniturtle]

Was the car engine running sound only in sync with your pulse? I have developed a sound like a generator running or a chainsaw in the distance, but it's constant. My heartbeat does seem to accentuate it when I'm in earplugs.

It was like a constant background noise. This was described to me by a surgeon as a "venous hum".

 

[GoatSheep]

It was like a constant background noise. This was described to me by a surgeon as a "venous hum".

Thanks for responding.

I see you said the volume fluctuated. Did any medications like Clonazepam have an effect on the volume?

So did they hear it objectively? From all I've read on venous hum it should stop if you turn your head a certain way or apply a certain pressure. None of that has worked for me. Did it work for you?