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

[tiniturtle]

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?

I did try Xanax, in the same family. No effect. In my case, the hum stopped when one of my sinus veins fully clotted and shut down in response to the dural fistula, which made my situation dangerous. After surgery, all of my symptoms resolved. Pulsatile tinnitus and hum gone. It took years, but apparently after the problem was corrected, that vein returned to normal function. The transverse/sigmoid sinus veins are often affected by dural arteriovenous fistula.

 

[GoatSheep]

I did try Xanax, in the same family. No effect. In my case, the hum stopped when one of my sinus veins fully clotted and shut down in response to the dural fistula, which made my situation dangerous. After surgery, all of my symptoms resolved. Pulsatile tinnitus and hum gone. It took years, but apparently after the problem was corrected, that vein returned to normal function. The transverse/sigmoid sinus veins are often affected by dural arteriovenous fistula.

Have you ever heard of residual inhibition working for any type of pulsatile tinnitus? I can get it to work for what I have going on for quite an extended period of time. So I'm not certain of what I have is pulsatile tinnitus. If it was caused by turbulent blood flow I don't see how something like that could be suppressed by residual inhibition.

 

[tiniturtle]

Have you ever heard of residual inhibition working for any type of pulsatile tinnitus? I can get it to work for what I have going on for quite an extended period of time. So I'm not certain of what I have is pulsatile tinnitus. If it was caused by turbulent blood flow I don't see how something like that could be suppressed by residual inhibition.

Don't go down the path of googling nonsense or listening to opinions of people on here. You have to go to a qualified specialist that is an expert in this field to get a diagnosis. It's rather easy for someone who knows what they are doing. They can determine if it is benign or not. The good news is that if that typically it's easy to see if it's dangerous. If they don't see an underlying cause it's typically benign and you don't have to worry about it.

 

[GoatSheep]

Don't go down the path of googling nonsense or listening to opinions of people on here. You have to go to a qualified specialist that is an expert in this field to get a diagnosis. It's rather easy for someone who knows what they are doing. They can determine if it is benign or not. The good news is that if that typically it's easy to see if it's dangerous. If they don't see an underlying cause it's typically benign and you don't have to worry about it.

I understand what you're saying. I have severe noxacusis. I am currently in hearing protection 24/7. There is no way I can go multiple specialists and be subjected to a bunch of loud tests in my state. So I am trying to find out what I can to see if I have hope that maybe something like Auricle can address this when it comes out. Because currently it is causing me extreme duress.

Unfortunately, I don't feel it's something not to worry about if it was benign. It is extremely debilitating. It's taken sleep from me. Which I had gotten back after a year and a half of normal tinnitus. A constant sensation of physically vibrating is deeply effecting me.

 

[tiniturtle]

I understand what you're saying. I have severe noxacusis. I am currently in hearing protection 24/7. There is no way I can go multiple specialists and be subjected to a bunch of loud tests in my state. So I am trying to find out what I can to see if I have hope that maybe something like Auricle can address this when it comes out. Because currently it is causing me extreme duress.

Unfortunately, I don't feel it's something not to worry about if it was benign. It is extremely debilitating. It's taken sleep from me. Which I had gotten back after a year and a half of normal tinnitus. A constant sensation of physically vibrating is deeply effecting me.

That's unfortunate. Sorry you're suffering with it. In my case, I was diagnosed by imaging tests, not by audiology. Audiologists and ENTs cannot really help with diagnosis.

 

[Marmit]

Hi tiniturtle. I've been suffering with pulsatile tinnitus that began around the time I had a heart attack 10 years ago. I also have a myriad of other issues possibly associated with the pulsatile tinnitus.

I live in NYC and am interested in getting a work up by either Dr. Patsalides who is now at North Shore Hospital or at NYU.

Based on your personal experience, which particular doctor and clinic would you recommend at NYU? There are so many clinics and doctors at NYU that treat tinnitus.

I'm very encouraged by your personal experience and hope for a similar outcome.

Thanks,
Marmit

 

[HoptoitMel]

Hello everyone, this is a great thread - incredibly informative!

So I've had what started as typical tinnitus for the first six months but then progressed into pulsatile tinnitus with head pressure that's completely dependent on postural changes. It's been about a year now since it all started.

I've had loads of blood work, all fine and also an MRI, MRV and MRA but without contrast as I was told it absolutely wasn't needed. Apparently everything was fine so I'm left guessing what to do now?

I'm in Canada so every appointment or referral has to go through my family doctor who has a hard time with any of this and figures since the MRI testing was okay then there's nothing to worry about. I have had symptoms that made me think I had circulation issues for years (leg pain, itching when exercising, etc) but again just brushed off.

Does anyone have any advice on a next step they could give?

Thanks

 

[Jeff M]

Thank you @tiniturtle for this super helpful post. Despite my ENT's assurances that I do not have pulsatile tinnitus because I can't hear it all the time, it sounds like the pulsing I hear at the same rate as my pulse requires advice from an expert.

But how do I find a neurointerventional radiologist? I've searched around online but it's not obvious how to find a specialist. Does anyone know an expert in the Washington DC area?

 

[Russell Grimes]

Thank you @tiniturtle for this super helpful post. Despite my ENT's assurances that I do not have pulsatile tinnitus because I can't hear it all the time, it sounds like the pulsing I hear at the same rate as my pulse requires advice from an expert.

But how do I find a neurointerventional radiologist? I've searched around online but it's not obvious how to find a specialist. Does anyone know an expert in the Washington DC area?

I live in North Carolina and just started emailing neurointerventional radiologists until somebody answered me. He was sympathetic and told me to give my PCP his number for a referral. I will be having an appointment soon.

Just look for neurointerventional radiologists within a 100 mile radius of you and start emailing.

 

[Jeff M]

@Russell Grimes, thanks, this is a great idea. I've identified a few at Johns Hopkins in Baltimore. Of course, their contact information is hidden better than the CIA. Hopefully, I'll find someone I can contact.

 

[Maurice H]

Hello,

Two months ago I discovered that I have pulsatile tinnitus. I had no idea what pulsatile tinnitus was, I just thought it was tinnitus that I contracted as a result of taking lots of Aspirin for my migraines.

After researching my symptoms, I realized that the noises that sounds like a field of crickets chirping in rhythm is called pulsatile tinnitus. In the RIGHT ear the whooshing noises are louder than the LEFT, but it's in both ears and the intensity of the noises are so loud that I have vertigo and nausea. I can't exercise, work, or function in daily activities because of this.

I find that caffeine and/or foods with sodium or salt make the noises even louder and more intense, which gives me intense anxiety, which raises my heartbeat, which makes the noises even more intense and faster, etc. A horrible feedback loop. I had to start taking Xanax 3 times a day to calm my nerves which minimizes the perception of the whooshing noises, but the Xanax is just temporary until this pulsatile tinnitus issue is resolved since Xanax is highly addictive and my body is already building a tolerance to Xanax after just 1 week.

I have seen my primary doctor, Neurologist, Audiologist, Neurologist, Urgent Care (several times), been to the ER 7 times in the last 6 weeks for this pulsatile tinnitus, extreme dizziness, nausea, (felt like I was about to faint or have a stroke), and so far none of the doctors or specialists can figure anything out except the ENT doctor who's trying to work with me on this. But even the ENT doctor said that this might even be outside his scope since the underlying condition is vascular (or "veinous in nature" as he put it) and said that I have turbulent blood flow in the jugular vein. He did a compression of the jugular vein on the RIGHT side of my neck which temporarily stopped the noises on that side and same with the LEFT. Also, when I tilt my head to the RIGHT the noises on RIGHT side stop but the LEFT side is loud. And same thing when I tilt my head to the LEFT, it stops the noises on the LEFT but the right side is extremely loud.

This is how the ENT doctor realized that this a venous issue. He looked at my Uktrasound Carotid Bilateral and said he saw a high-riding jugular bulb on both sides, particularly on the RIGHT, which is the ear with the louder noises.

I also researched pulsatile tinnitus and saw that there is a UCSF Pulsatile Tinnitus Clinic here in San Francisco. Since UCSF is a 3rd party outside the network of my health plan I have to get a doctor's referral and it has to be approved with prior authorization from my health insurance. I am waiting for that referral to be approved. I hope it happens soon because the torture of this pulsatile tinnitus is so loud and so horrible that I am contemplating suicide out of desperation to make it stop.

 

[Russell Grimes]

Hello,

Two months ago I discovered that I have pulsatile tinnitus. I had no idea what pulsatile tinnitus was, I just thought it was tinnitus that I contracted as a result of taking lots of Aspirin for my migraines.

After researching my symptoms, I realized that the noises that sounds like a field of crickets chirping in rhythm is called pulsatile tinnitus. In the RIGHT ear the whooshing noises are louder than the LEFT, but it's in both ears and the intensity of the noises are so loud that I have vertigo and nausea. I can't exercise, work, or function in daily activities because of this.

I find that caffeine and/or foods with sodium or salt make the noises even louder and more intense, which gives me intense anxiety, which raises my heartbeat, which makes the noises even more intense and faster, etc. A horrible feedback loop. I had to start taking Xanax 3 times a day to calm my nerves which minimizes the perception of the whooshing noises, but the Xanax is just temporary until this pulsatile tinnitus issue is resolved since Xanax is highly addictive and my body is already building a tolerance to Xanax after just 1 week.

I have seen my primary doctor, Neurologist, Audiologist, Neurologist, Urgent Care (several times), been to the ER 7 times in the last 6 weeks for this pulsatile tinnitus, extreme dizziness, nausea, (felt like I was about to faint or have a stroke), and so far none of the doctors or specialists can figure anything out except the ENT doctor who's trying to work with me on this. But even the ENT doctor said that this might even be outside his scope since the underlying condition is vascular (or "veinous in nature" as he put it) and said that I have turbulent blood flow in the jugular vein. He did a compression of the jugular vein on the RIGHT side of my neck which temporarily stopped the noises on that side and same with the LEFT. Also, when I tilt my head to the RIGHT the noises on RIGHT side stop but the LEFT side is loud. And same thing when I tilt my head to the LEFT, it stops the noises on the LEFT but the right side is extremely loud.

This is how the ENT doctor realized that this a venous issue. He looked at my Uktrasound Carotid Bilateral and said he saw a high-riding jugular bulb on both sides, particularly on the RIGHT, which is the ear with the louder noises.

I also researched pulsatile tinnitus and saw that there is a UCSF Pulsatile Tinnitus Clinic here in San Francisco. Since UCSF is a 3rd party outside the network of my health plan I have to get a doctor's referral and it has to be approved with prior authorization from my health insurance. I am waiting for that referral to be approved. I hope it happens soon because the torture of this pulsatile tinnitus is so loud and so horrible that I am contemplating suicide out of desperation to make it stop.

I have been suffering for seven months. Klonopin helps my anxiety but I can't take it every day because I do not have much. I went to the emergency room like you but went only twice because they don't do anything. I have a high riding jugular bulb on the right side and that is primarily the side I am suffering with pulsatile tinnitus. It sounds like a high-pitched whooshing and sometimes ringing. I think my vertebral artery may be the culprit but will not know unless I get an MRI of my spine.

If you get an MRI/A/V of your brain, skull base, and neck you may get a diagnosis. If you bounce up and down do you get the sound in rhythm with the movement?

Don't think about suicide. Eventually you will accept the noise and it will become a natural background of your daily life if you do not get it resolved. Also note that a high riding jugular bulb is not a pathology. Just because you have one does not mean it is causing the pulsatile tinnitus. ENT doctors like to use a high riding jugular bulb as a red herring to discourage patients from more testing.

 

[littlecheese0592]

Hi everyone, I'm looking for a pulsatile tinnitus specialist in or near the southeast KY area. The closest appears to be a clinic in VA that's associated with UVA, but since that's not a simple day trip for me, I'm not sure if it's any better of an option than the ones in NY. Another one seems to be in Chicago - again, not very close.

If anyone knows of a place within 100 miles or so, maybe even 200 miles, I'd be grateful if they could post the details.

I definitely don't mind going out-of-state, but I'd rather not have to fly, I'm hoping for some place that I can drive to and back within a single day.

 

[Russell Grimes]

Hi everyone, I'm looking for a pulsatile tinnitus specialist in or near the southeast KY area. The closest appears to be a clinic in VA that's associated with UVA, but since that's not a simple day trip for me, I'm not sure if it's any better of an option than the ones in NY. Another one seems to be in Chicago - again, not very close.

If anyone knows of a place within 100 miles or so, maybe even 200 miles, I'd be grateful if they could post the details.

I definitely don't mind going out-of-state, but I'd rather not have to fly, I'm hoping for some place that I can drive to and back within a single day.

Dr. Dennis Whaley
Neurointerventional Radiologist

2463 Nicholasville Road
Lexington, KY 40503

Phone: 1-800 642-6805

 

[DeanD]

How can you tell the difference between tinnitus and pulsatile tinnitis?

I started out with tinnitus - but over the past month I am having blood flow issues, particularly around the head. I'm currently undergoing a number of tests.

I guess the loudest tone sounds like a rhythmic whooshing. Almost all my tones are rhythmic in nature.

It is also sound reactive, and I do have hyperacusis too.

It's deafeningly loud at times (perhaps loudest when I have my head on a pillow or surface, even if not covering an ear).

I am suspecting pulsatile tinnitus (or at least tinnitus including pulsatile), but how can you really be sure?

 

[Varda]

I'm worried that the loud noise of the MRI will make my tinnitus worse.

 

[Rainer]

I'm worried that the loud noise of the MRI will make my tinnitus worse.

I didn't have any spike or other unwanted outcomes from an MRI after using both Moldex SparkPlugs and earmuffs in combination.

Do you have any reason to believe that this won't work for you?

 

[Varda]

I didn't have any spike or other unwanted outcomes from an MRI after using both Moldex SparkPlugs and earmuffs in combination.

What MRI-safe earmuffs did you use?

 

[Rainer]

What MRI-safe earmuffs did you use?

I used those supplied by the radiologist. Better call beforehand, as I'm not sure whether every radiologist offers them.