No Known Reason for Pulsatile Tinnitus? Is That Possible?

[CL0292]

Hi there, my name is Laura I am new to this forum. I am 28 years old, I began having symptoms of pulsatile tinnitus in January, 2019.

First it was only while lying down, then in the next few weeks got progressively worse. I could hear that "whooshing" wind-like sound that went along with my heartbeat.

I went to an ENT whom referred me to a Neurologist. They performed an MRI of brain which came back negative, and the neurologist and primary doctor basically just dismissed it. .

After doing much research over the last year and a half, I realized this had a name and that it could be caused by underlying issues.

I pretty much got used to it. It doesn't bother me much.

Then last month I tested positive for COVID-19 and the turbulence in the ear got much worse, along with a severe headache that no pain medication would relieve, and I also got a lot of pressure in the right ear. Everything was on my right side only, which is the ear where I have the pulsatile tinnitus.

I got very concerned and once I tested negative I went to a new Neurologist, whom works alongside a Neuroradiologist. They ordered an MRI, MRA, and MRV and the next day I got in to get the test done.

I received my results today and every exam came back negative and it all looked 100% fine. I asked her, then what could possibly be causing this? She stated that it is possible for a very small vein to be missed on an MRI, but that everything looks really good, and that the next step would be an angiogram which she did not recommend me to do because it has more risks.

Now I'm back to square one with no answers. I know it is not life threatening which is a relief, but I would like to know if this has happened to anyone? Get this suddenly one day and it's for no reason at all? Does it ever go away? And did it become a risk one day?

I'm very happy that I do not have anything wrong in my veins, or head. But I would really like some answers as to why this even happens.

Sorry for the super long post!

 

[Lilah]

Hi there, my name is Laura I am new to this forum. I am 28 years old, I began having symptoms of pulsatile tinnitus in January, 2019.

First it was only while lying down, then in the next few weeks got progressively worse. I could hear that "whooshing" wind-like sound that went along with my heartbeat.

I went to an ENT whom referred me to a Neurologist. They performed an MRI of brain which came back negative, and the neurologist and primary doctor basically just dismissed it. .

After doing much research over the last year and a half, I realized this had a name and that it could be caused by underlying issues.

I pretty much got used to it. It doesn't bother me much.

Then last month I tested positive for COVID-19 and the turbulence in the ear got much worse, along with a severe headache that no pain medication would relieve, and I also got a lot of pressure in the right ear. Everything was on my right side only, which is the ear where I have the pulsatile tinnitus.

I got very concerned and once I tested negative I went to a new Neurologist, whom works alongside a Neuroradiologist. They ordered an MRI, MRA, and MRV and the next day I got in to get the test done.

I received my results today and every exam came back negative and it all looked 100% fine. I asked her, then what could possibly be causing this? She stated that it is possible for a very small vein to be missed on an MRI, but that everything looks really good, and that the next step would be an angiogram which she did not recommend me to do because it has more risks.

Now I'm back to square one with no answers. I know it is not life threatening which is a relief, but I would like to know if this has happened to anyone? Get this suddenly one day and it's for no reason at all? Does it ever go away? And did it become a risk one day?

I'm very happy that I do not have anything wrong in my veins, or head. But I would really like some answers as to why this even happens.

Sorry for the super long post!

I was moderately anemic and my pulsatile tinnitus improved significantly after taking iron. Check your blood counts.

 

[CL0292]

Thanks! That is great to hear. I have been anemic in the past and I do have a blood work routine coming up. Will be checking that out as well.

 

[tiniturtle]

Thanks! That is great to hear. I have been anemic in the past and I do have a blood work routine coming up. Will be checking that out as well.

Did you read my thread on the subject?

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

 

[Michael01]

On that note, should any Interventional neuroradiologist be able to help with this? I'm in the process of getting a referral to see someone who works for a medical centre called Sydney Neuroinventional Specialists to get myself checked out, as they are the only group in my area, without me having to travel excessive distances, which is a bit difficult with COVID-19 around, as I don't drive, so have to mainly rely on public transport and what government transport services I can use.

 

[tiniturtle]

On that note, should any Interventional neuroradiologist be able to help with this? I'm in the process of getting a referral to see someone who works for a medical centre called Sydney Neuroinventional Specialists to get myself checked out, as they are the only group in my area, without me having to travel excessive distances, which is a bit difficult with COVID-19 around, as I don't drive, so have to mainly rely on public transport and what government transport services I can use.

The quality of the doctor you're seeing makes an huge difference. With that said, at least NIR have specialized training for things like this.

 

[CL0292]

Hello Michael, yes, I actually went though the previous poster (@tiniturtle) and noticed that they mentioned an interventional Neuroradiologist as well! I luckily live in a major city so I was able to find 2 different ones that I would have access to. I'm thinking I will bring them my MRI, MRA, and MRV results for a second opinion. I do feel a lot better that is nothing urgent like a tumor or aneurysm or anything like that.

Also please keep me updated with your progress! I wish you much luck and hope that you are able to find answers.

 

[Michael01]

Also please keep me updated with your progress! I wish you much luck and hope that you are able to find answers.

I'll try. Currently trying to talk my GP into giving me the referral I asked for.

NOT nausea and vertigo tablets.

I've been in correspondence with them and they seem eager to assist me, but I need that to start the whole process in the first place.

 

[DebInAustralia]

I was moderately anemic and my pulsatile tinnitus improved significantly after taking iron. Check your blood counts.

When you say anaemic, do you mean iron deficient?

Has your hemoglobin been affected, or just low iron stores?

 

[Greg Sacramento]

My Causes:

Irregular Blood Vessels
High Blood Pressure and associations
Atherosclerosis
Turbulent Blood Flow and associations

I just love seeing an article that has them all listed with big colorful pictures Mine is very loud (3 pulsatile sounds) plus very loud somatic and hearing loss tinnitus, but my mouth pain is the worse to deal with.

https://healthprep.com/articles/hearing/common-causes-pulsatile-tinnitus/

 

[Steph1710]

angiogram

If they can't find a problem looking at the other scans, then I would have the angiogram done. What did she say the risks were?

However, if you give your scans to a good neuroradiologist, then angiogram probably wouldn't be necessary.

Good luck on your journey! Don't stop pushing for answers. I've had two years of being told everything was fine, then last Friday the hospital called to say that actually I'm missing a bone in my head, and I have a blockage which is the cause of my pulsatile tinnitus.

They got this information from the same scans that were apparently "fine".


Steph <3

 

[Julien87]

Welcome to the forum @CL0292. I hope you'll find the cause of your tinnitus soon.

Sorry to read this @Steph1710.
Can it be "fixed" somehow?

 

[CL0292]

@Steph1710 The Neurologist stated that since my scans were looked at by her and by a neuroradiologist and both concluded that my scans looked great and they were not able to see anything wrong at all, they did not recommend a cerebral angiogram, because it has more risks like stroke and I'm not sure what else and that they only recommend that if they see something on the imaging. But after a bit more research and thanks to the members on here as well, I will be getting in contact with an Interventional Neuroradiologist so that they can go over my scans as well.

I am very happy you did not give up! I have had so many people tell me that I just have to deal with it, and sometimes there is just no cause, but I will not give up until I exhaust all of the options and testing. Who knows maybe could help others in the future as well. For your diagnosis, is it able to be fixed?

 

[Steph1710]

Can it be "fixed" somehow?

Hi Julien!

Yes! It most certainly can be fixed! The doctor actually said he has done two operations like mine before, with great success.

 

[CL0292]

Hi everyone, I have an update.

I got my bloodwork done and turns out I do have a bad imbalance, one of my thyroid levels is low and one of the ovarian hormones is too high. I will be seeing an endocrinologist soon. It has been suggested that a hormonal imbalance may cause pulsatile tinnitus.

If this is not my answer then I will still be seeing an Interventional NeuroRadiologist so they can look at my scans and see if my neurologist missed anything.

Hopefully one of these will be my answer!

 

[CL0292]

I had an appointment today and my Primary ordered more detailed bloodwork on my thyroid. Will follow back up in about a month to go over results. I had a very rough weekend the PT has been very loud and turbulent and the regular tinnitus that I have had a sudden increase too. It was way too much! I feel a bit better today but Friday was very rough sometime it just becomes unbearable.

 

[DebInAustralia]

I'm sorry you're experiencing this.

I have recently been diagnosed with hypothyroidism, and am preparing to gave an iron infusion next week for a persistently low ferritin.

Let me know how you get on.

 

[Mikeman]

Hello @CL0292,

I have experienced a very similar situation as you. I developed pulsatile tinnitus back in May 2020 in my left ear. It is not that bad and it tends to come and go but I have had some bad days as well. I have had every test and I did go ahead with the cerebral angiogram and I'm very happy that I did that. I would suggest that you get it done as it is definitely the best test since they fill your veins in your brain with a liquid and can really see exactly what every artery and vein looks like and they actually take a video to watch the blood flow in motion. I went to a top doctor in Boston. They said it looked normal. I now know 99% I have nothing dangerous and you can't get that level of assurance with just the scans. I'm still searching for my cause as well. You could try Furosemide which reduces the blood in your system and helps quiet things.

Keep us updated, I'm thinking of getting my thyroid checked in more detail.

 

[lisajean]

I had an appointment today and my Primary ordered more detailed bloodwork on my thyroid. Will follow back up in about a month to go over results. I had a very rough weekend the PT has been very loud and turbulent and the regular tinnitus that I have had a sudden increase too. It was way too much! I feel a bit better today but Friday was very rough sometime it just becomes unbearable.

Hi Laura. Any updates?

 

[CL0292]

Hello! I know it's been a few months but I've still gotten nowhere, my thyroid levels were a bit low (overactive) but not enough to require medication. I am also 5 months pregnant and the pulsatile tinnitus has gotten quite worse. There is not much testing I can have done due to the pregnancy so it's just on hold at the moment. When I have the baby I would like to request a follow up MRI/MRV/MRA and take to the neuro international radiologist.

I have heard it gets better and quiet during pregnancy but it's actually gotten quite worse. Nothing to do with blood pressure as mine is very low average around 90/60. I also have regular tinnitus on top of the pulsatile. I've noticed decreased hearing as well but I am unsure if it's the pulsatile getting so loud that is distracting or if it's some kind of hearing loss.