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Update for the last year: ear clicking, left ear pain - can't nail down reasons


#1

So, here I am still on this migraine journey or the journey of not knowing the cause. My main concern is left sided ear pain and dizziness, and also feeling as though my eyes are not working well together.

This started about 1 year ago. I started getting ear aches that felt like a pounding throbbing ear headache which would subside with Ibuprofen. I also started feeling very off-balance and later developed BPPV in my right ear which was treated with the Epley. Although the BPPV went away, to this day, I am still combating ear pain. I went to see Hain and everything was pretty much ruled out except he saw some slight nystagmus which was under 3 seconds. He thought it was some minor imbalance from the BPPV but nothing major. He also noticed I had a retracted left eardrum and suggested maybe I had some fluid in there.

I’ve later visited audiologists and ENTs who say I have a slightly retracted ear drum. In addition, I’ve developed a clicking or broken speakerphone sound in my left ear (and a little in my right) that only occurs after louder or higher frequency sounds. Audiologist thought maybe there was some dysfunction of the tubes… but who knows.

Before this all started I had a long drawn out cold and cough but also was under a lot of stress. Working long hours at the laptop in bad posture with little breaks, minimal sleep and not the best diet (chocolate binging). Hain also suggested my neck was at play because I had some cervical nystagmus only turning head to the left — so maybe my mystery ear pain is being caused by my neck?I notice if I keep my neck in a awkward position for too long I get major fleeting tinnitus. I also have been feeling a little better since seeing a physiotherapist.

In the midst of this, trying to find the reason for all my symptoms, or reasons, I have discovered I have bruxism. Specifically, clenching.

It’s just so bizarre that these symptoms all started literally overnight.


#2

FWIW I get an odd ear click that goes in spasms sometimes.

I can worsen my tinnitus by turning my head to the extreme too. I’m pretty comfortable with my conclusion of what is causing that.

It’s frankly laughable the state of ear medicine at the moment. I respect that telemetry needs to be improved for research to be able to study live subjects with an improved level of resolution, but you should not have to bear uncertainty and lack of answers for very basic, common symptoms like this. Nor should anyone else. It’s 2018 for heaven’s sake!


#3

I know, it really is. I read a study that suggested unknown ear pain is usually migraine which would make sense. But why now?


#4

Haha, don’t get me started on the migraine bandwagon. It simply can’t explain all the symptoms people get and it definitely doesn’t answer the question: why are you getting a migraine? (the answer is not: because you are having a migraine!)

Have you had a CT scan of your inner ear bones? What is their explanation for the drum retraction?


#5

They don’t know. I had a CT scan of my head and an MRI of the brain and inner ear + auditory canal and it’s all normal. But like Hain said, there seems to be a component coming from my neck.

So not sure if I should have a neck MRI. The nuero I saw said if there was something wrong with my neck I would have other symptoms like tingling or numbness in the extremities.


#6

Can you increase the tinnitus by clenching your jaw too? As well as twisting the neck?


#7

Yes, I definitely can. I also notice if I put my head down my left ear drum will pop. So there’s either off pressure in there or some fluid. I also get dizzier if I turn my head suddenly.


#8

Then, forgive me for disagreeing with Dr. Hain, but that sounds like a degree of over pressure in your inner ear.

I have it (diagnosed by a top oto-neuro in London who dismissed my previous VM diagnoses) and it has slowly decreased over time, but it takes a long long time. It’s so much better nowadays though and continues to improve.

I make no apology for disagreeing with renowned doctors because even the best ones don’t seem to agree with eachother either!


#9

But if the inner ear had too much pressure, wouldn’t that show on the Ecog test or ovemp?


#10

To be honest I never had those tests (don’t ask me why). My oto-neuro just simply went on my reported symptoms, the traumatic event I endured and he was very sure.

My conclusion to that is twofold:

  1. The presumption about the relationship between those test results and what is actually going on is wrong.
  2. There are more kinds of ‘subtle’ hydrops that are relatively benign but nevertheless cause symptoms.

#11

what happened to you initially? do you have migraines? See, the problem with me is I also get migraines sometimes together with the ear pain.

When I saw Hain he said he saw tiny bubbles which meant some fluid in there… others later have not seen bubbles but have noticed the retraction. Could inner ear affect middle ear that way?


#12

Sure I had terrible migraines, but only 1 year after my initial trauma (if you remember I pointed a shower into my ear for a brief moment … became severely dizzy over next 24 hours and for 5 weeks after … then it all cleared up … and came back as MAV hell 5 months later … getting worse for about 6 months).

You see the thing is inner ear trouble causes migraines … that’s pretty well known … but somehow we’ve had this movement that likes to totally ignore the inner ear element … in part because they can’t do much about the inner ear if it’s hydrops, they can only treat the migraines. Luckily the body sorts out the hydrops itself with time in these cases …


#13

I know when I had BPPV my migraines were far worse. The doctor told me that hydrops would have been detected with the Ecog though and that Hydrops causing hearing loss. Did you have hearing loss documented on any hearing tests?


#14

Yes, HF hearing loss, mild to moderate.

I suspect the degree of hearing loss tells you the degree of Hydrops.

If you have barely any hearing loss that suggests very little additional inner ear pressure I’d imagine … but I suspect this is a sliding scale and might depend on the anatomy of the individual to some extent.

BPPV could be hydrops too … they don’t know the true aetiology of it. I’d say the one of the few things you can rely on is the clinical evidence of what is likely to make you feel better.

So despite a physical trauma to the ear, it was a migraine medicine that helped me feel better. The implications of that are obvious.

Heck, they only just discovered a new mechanism in the inner ear in the last few months … the science is so young!


#15

One thing I read is that the inner ear does not cause pain because there are no pain receptors on any of the nerves that run to the inner ear from the brain. The middle ear is likely to cause pain because the nerves that run through it do have pain receptors. I don’t have fullness it’s more of a sharp stabbing pain.


#16

Yep I get that too … in phases.

Here’s the article.

It’s astounding that this was not discovered before and I think has huge implications for interpretation of symptoms:

https://www.mvertigo.org/t/inner-ear-pressure-release-valve-found/15685/11

Don’t you think it’s insane that this wasn’t found before?

Can you just imagine how a pressure release of fluid from the inner ear might be interpretted by the brain?

Is this the answer to the age old question of: what is vertigo? by any chance?

It also explains why people don’t suffer from ‘glaucoma of the inner ear’ … despite it being similar to the eye … turns out the pressure never gets high enough to damage it. Which makes Hydrops possibly completely benign in most cases I suspect - in other words nothing to be anxious about.

It seems that anxiety is a big driver for people to want to believe in the migraine hypothesis … I think this is ultimately counter-productive because you don’t want science barking up the wrong tree … and the fear is unwarranted anyway because all Hydrops probably is in most cases an increase in pressure and a fluid concentration issue most likely which although it produces annoying symptoms is hardly the scariest idea in history?


#17

I will read the article. The clicking that I speak off is ALL the time to loud frequency sounds like forks clanging, children yelling even my own voice when I raise it. It’s been called the “broken speaker syndrome”… and apparently it;s because the brain is reinterrupting sounds???


#18

I get that exactly

And no, I think it is caused by hydrops and the clicking/distortion is your brain firing a muscle reflex in your ear to protect your ear which now has a slightly incorrect resonant frequency … its your brain thinking it needs to protect your ear from acoustic damage I suspect - a reflex learnt when ones ear was normal.

All just my hypothesis, but I just know I’m very close!

PS my doctor tells me that hydrops changes the resonant frequency of your ear.

And PPS it’s got loads better … so just be patient … it should eb away.


#19

It’s slowly getting better but taking a long time. I have flown like 6 times with this and it didn’t make a difference except I had some slightly increased motion memory from the plane. Have you flown?


#20

Yep … and two places where it was once hell but is no longer hell:

  • cars … used to get a horrible feeling of pressure in the bad ear … that’s more or less gone
  • metro/tube … AWFUL distortion when it was at worst … like a massive rumbling/broken speaker … this has almost completely gone

How long are you in now from initial cold incident?

I’m now 3.5 years more or less from day of trauma. It takes THAT long …

If you’ve experienced improvement I’d imagine that will simply continue and you’ll just get better and better.