Randomly Got Whooshing Type of Pulsatile Tinnitus — It Has Gotten Worse Over the Weeks

[tiniturtle]

Hi All,

I've got a few questions that I'd like to ask please.

1) Can pulsatile tinnitus go away on its own? I'm concerned that the cause of mine isn't going to be detected as I've read that this is the case For around 30 per cent of people. I've also read that it rarely goes away on its own. It hasn't filled me with much confidence when I keep being told by doctors to learn to live with it as I'd rather they were trying to find a cause still.
I was just wondering if anyone out there had it but it did eventually go on its own.

2) If pulsatile tinnitus and tinnitus are two different things, why do some of us randomly have both out of the blue around the same time roughly? I got mine both six weeks apart.

3) My symptoms are changing quite a lot and I'm developing more and more symptoms. I now have a lot of what I believe to be eye floaters as well as ever changing tinnitus. Do any of you know why this could be?

I'm having some blood taken soon but I don't think it will determine much.

Thank you. Hope you're all keeping well and staying stay during this COVID-19 situation.

Regards.

You need to have proper imaging and evaluation by a doctor that is trained to diagnose and treat this. This is not an ENT. My pulsatile tinnitus went away on its own, and that's what also marked the point at which my dural arteriovenous fistula became life threatening. That was the symptom that my neurosurgeon found most concerning. It's generally really bad when it stops. I didn't hear it anymore, because the vein fully shut down and the blood flow was being forced backwards back into the veins of my brain. No one here can diagnose you or give you answers, just help point you in the right direction. I've given you sound advice about how to go about doing that.

 

[Gstar2020]

Yes you have. Many thanks. You have been a great great help because before hearing from yourself, I assumed that ENT were my last point of call.
I just get really insecure days whilst waiting to be referred and guess I want reassurance that there is hope of it eventually going.
Kind regards

 

[tiniturtle]

Yes you have. Many thanks. You have been a great great help because before hearing from yourself, I assumed that ENT were my last point of call.
I just get really insecure days whilst waiting to be referred and guess I want reassurance that there is hope of it eventually going.
Kind regards

I understand. I'm not meaning to be insensitive or harsh. I'm just speaking from my own experience, what I would have liked someone to say to me.

 

[Gstar2020]

Thanks.

I just wanted to know if it's possible for both types of tinnitus to go or if I am definitely stuck with this.

It's nice when I read that people have received treatment for theirs and it's helped them.

My doctor just phoned me but basically said it's likely I'm stuck with mine as once it's here, it's normally here to stay. However, I still want hope that it can go away or at the very least fade.
The last two days have been hard as the ringing seems really loud and invasive.

I feel at the moment that I'm trapped in a nightmare.

Like most people on here, I'm longing for some quiet time.

Stay well.
Regards

 

[tiniturtle]

Thanks.

I just wanted to know if it's possible for both types of tinnitus to go or if I am definitely stuck with this.

It's nice when I read that people have received treatment for theirs and it's helped them.

My doctor just phoned me but basically said it's likely I'm stuck with mine as once it's here, it's normally here to stay. However, I still want hope that it can go away or at the very least fade.
The last two days have been hard as the ringing seems really loud and invasive.

I feel at the moment that I'm trapped in a nightmare.

Like most people on here, I'm longing for some quiet time.

Stay well.
Regards

Well, I still have my constant tinnitus. I don't think that's going to go away, but I think it got better. The pulsatile tinnitus came later, and from a different cause, and that's gone after surgery.

 

[Nadia E]

Hi Gstar2020,
Were you able to see an interventional radiologist and find out the source of your pulsatile tinnitus?

I'm experiencing the same symptoms as you - pulsatile tinnitus in my left ear, and floaters (!) in my left eye. I started hearing the whooshing sound when I was about 15 weeks pregnant (my daughter was born in June 2020). I was hoping it would go away after the delivery. But it got worse, and I started seeing floaters too.

Also, my left ear feels "blocked". My pulsatile tinnitus is objective - my husband can hear it if he puts his ear next to mine.

I have seen an ENT and an ophthalmologist. The advice from the ENT was to learn to live with it. The ophthalmologist didn't see anything abnormal either.

I'm concerned that I might have a dural AV fistula. Having a newborn on my arms, and the covid situation make it more difficult to have appointments scheduled and to get more referrals.


Please let me know if you got diagnosed, or received any treatment. I'm worried that I have both tinnitus and floaters...

 

[Gstar2020]

Hi sorry to hear that you are going through the same thing as me, it is horrible and I feel for you:-(.

My ENT doctor basically told me the same thing as yours.

I'm awaiting an angiogram and lumber puncture. Idiopathic intracranial hypertension is suspected. The angiogram sounds pretty scary so I'm worried about going for it. However, living with these symptoms is difficult too.

Wishing you all the best. I will keep you posted after my tests.

Regards

 

[Steph1710]

@Nadia E

Do you live in the UK? I've finally been properly diagnosed and have been told they can operate to stop the pulsatile tinnitus.

There is literally one Dr in England who seems to know what he is doing.


Steph <3

 

[Gstar2020]

Hi Steph,

I'm not sure where Nadia is from but I'm Living in England.

What was your diagnosis If you don't mind us asking and what hospital did you go to?

I'm so glad you're getting treated and have some answers.
Stay safe and good luck with your treatment.

 

[Steph1710]

Hey @Gstar2020.

The hospital you need to get to is Addenbrookes in Cambridge. There's this doctor - Mr Axon, and he seems to be the only person in England willing to do anything about pulsatile tinnitus.

However, don't get me wrong. I've been fighting with Addenbrookes for nearly a year to do anything with me. On Friday just gone, they finally showed my scans to Mr Axon whom spotted my problem straight away, and said it's fixable!

My sigmoid sinus bone is missing, which in turn has caused a stenosis of the main vein which carries and drains blood away from the brain.

Even with Addenbrookes it's a long fight. Just try to get to Mr Axon if you can. Unfortunately for me, I was passed straight to neurology rather than their ENT clinic, and this meant I was somehow lost from ENT.

Hope that helps.

Steph

 

[Juan]

However, don't get me wrong. I've been fighting with Addenbrookes for nearly a year to do anything with me. On Friday just gone, they finally showed my scans to Mr Axon whom spotted my problem straight away, and said it's fixable!

My sigmoid sinus bone is missing, which in turn has caused a stenosis of the main vein which carries and drains blood away from the brain.

Wow, it's awesome you were finally diagnosed, they were able to spot the cause of your tinnitus!

It seems like good news if it's fixable!

 

[Steph1710]

It seems like good news if it's fixable!

Hey Juan!

Yeah they said there's two operations they will do. One is to stent the vein to help the blood flow, and the other is to build up the wall around the sigmoid sinus to hold it in place again.

They said this should completely eliminate the pulsatile innitus!

It's only taken two years and numerous doctors telling me I'm fine.

Now they've said I have raised ICP, flattened ventricles, venous stenosis, missing sigmoid bone, and lastly, a significant chiari malformation.

Funny because two months ago they were saying nothing is wrong.

Never give up the good fight is what I say to people. We know when something isn't right with us - despite what the doctors might say.

 

[Nadia E]

@Steph1710
I'm in the US (Philadelphia).
I'm so glad you got your diagnosis, and will be treated!

@Gstar2020
The angiogram sounds scary to me too I hope everything will go well, and you'll have some answers.

I'll keep you posted when I have any news. I should have my next appointment with my PCP in a couple of months, will ask for further referrals. But I'm afraid that he will again refer me to someone who is not familiar with/specialized in what I have...

I wish I could hug you all. This whooshing gives me horrible anxiety.

 

[Gstar2020]

Thanks for the all the info.
I'm glad you're getting sorted and hope the rest of us get sorted soon too.
Stay well everyone.

 

[Juan]

Hey Juan!

Yeah they said there's two operations they will do. One is to stent the vein to help the blood flow, and the other is to build up the wall around the sigmoid sinus to hold it in place again.

They said this should completely eliminate the pulsatile innitus!

It's only taken two years and numerous doctors telling me I'm fine.

Now they've said I have raised ICP, flattened ventricles, venous stenosis, missing sigmoid bone, and lastly, a significant chiari malformation.

Funny because two months ago they were saying nothing is wrong.

Never give up the good fight is what I say to people. We know when something isn't right with us - despite what the doctors might say.

Wowww, I am happy you will be getting rid of pulsatile tinnitus soon!

Which testing did doctors do to see all that? CAT Scan? MRI?

 

[Steph1710]

Wowww, I am happy you will be getting rid of pulsatile tinnitus soon!

Thanks Juan! Me too! If only they could get rid of my normal tinnitus too haha.

It showed on a CTV scan with contrast dye. They actually found it only after two scans.

 

[Gstar2020]

Hi Steph1710,

Just a quick question regarding your "normal" tinnitus, please?

Did that begin at the same time as the pulsatile tinnitus and do you have any idea what could be causing your "normal" tinnitus?

I first got pulsatile tinnitus and then "normal" tinnitus about six weeks later.

Regards.

 

[Jber]

Did they check your cervical spine, it's possible that your atlas (C1) is stuck against your skull which blocks nerves and blood vessels. It would also explain why your ear gets filled up because your head is tilted to one direction.

Some symptoms that come along with a misaligned atlas take years to develop.

 

[Steph1710]

Hi Steph1710,

Just a quick question regarding your "normal" tinnitus, please?

I've had pulsatile tinnitus since 2018. My normal tinnitus developed after I was on antibiotics for 6 months for a problem with my eyes.

Someone else has started a thread on tinnitus talk recently, regarding a possible link between the two.

I think the conclusion was that once you have pulsatile tinnitus it is easier to develop normal tinnitus due to certain changes to blood flow around the ears etc.

Have a look through the new posting and you should find the thread.

Oh just to let you know, you have to tag me your replies, otherwise I don't see you messages.

Steph x

 

[Gstar2020]

Thank you

I will take a look.

So I wonder if your normal tinnitus will subside once your pulsing tinnitus is rectified as the blood flow should hopefully then return back to normal. Fingers crossed.

Regards.

 

[BigNick]

Hey @Gstar2020.

The hospital you need to get to is Addenbrookes in Cambridge. There's this doctor - Mr Axon, and he seems to be the only person in England willing to do anything about pulsatile tinnitus.

However, don't get me wrong. I've been fighting with Addenbrookes for nearly a year to do anything with me. On Friday just gone, they finally showed my scans to Mr Axon whom spotted my problem straight away, and said it's fixable!

My sigmoid sinus bone is missing, which in turn has caused a stenosis of the main vein which carries and drains blood away from the brain.

Even with Addenbrookes it's a long fight. Just try to get to Mr Axon if you can. Unfortunately for me, I was passed straight to neurology rather than their ENT clinic, and this meant I was somehow lost from ENT.

Hope that helps.

Steph

Hi @Steph1710.

Did you meet Mr Axon? I'm hoping to see him privately via Nuffield.

 

[Steph1710]

Hi @Steph1710.

Did you meet Mr Axon? I'm hoping to see him privately via Nuffield.

I have never actually managed to speak/see him - but he has looked at my scans and has said he can see the problem: narrow left transverse sinus/missing sigmoid sinus bone.

However, I've been waiting a year for a high definition scan so they can see how to operate. Apparently because of COVID-19, I can't get one.

I'm now thinking of going private, but the scan alone costs £400-600!

Have you spoken to him at all?

Steph x

 

[BigNick]

I have never actually managed to speak/see him - but he has looked at my scans and has said he can see the problem: narrow left transverse sinus/missing sigmoid sinus bone.

However, I've been waiting a year for a high definition scan so they can see how to operate. Apparently because of COVID-19, I can't get one.

I'm now thinking of going private, but the scan alone costs £400-600!

Have you spoken to him at all?

Steph x

No, I've only just enquired. There's another pulsatile tinnitus specialist called Professor Higgins from apparently the same trust. If you search YouTube for Jodie Poole, she talks about him.