Looking for a Diagnosis, Can Anyone Relate to These Symptoms?

[arg_mm]

Hi, I started with mild tinnitus and dizziness back in 2008, then on 2013 I started worsening. I've had the following symptoms for some time now, and slowly worsening. I'd like to know if anyone shares some of these and if they have a diagnosis :

• Intrusive tinnitus (2 tones on left ear, just developed one a couple of months ago).
• 40-50 db dip on 2000 Hz frequency in hearing (both ears).
• Dizziness (constant, worse when moving head as in swimming, jumping, running, etc, also when straining).
• 2 episodes of mild vertigo.
• Hearing my own voice (left ear), it causes me pain and at some point during the day I need to stop talking.
• Hearing my left eye movement (on left ear).
• Hearing heartbeat (left ear) when in complete silence or under physical strain (very loud in this case)
• Mild hyperacusis (left ear)
• Fleeting loud tinnitus, very often and scares me a lot (both ears), I can feel an aura just before it happens.
• Very loud tinnitus and more tones when waking up in the middle of the night. I go back to sleep and when I wake up in the morning it is back to "normal".

I take Clonazepam and Betahistine, not sure if they work. Needless to say I have anxiety (had it before too). Also pre-diabetes (insuline resistance) and high cholesterol.

I protect my hearing, when on the street I cover my ears with cotton wool, sometimes I use custom made
silicone earplugs. I avoid loud places like bars, social events, etc. My life is pretty dull because of this condition.

I have been diagnosed with Meniere's, other doctors say it's not Meniere's (vertigo is not rotational and hearing test doesn't correlate with it).
Others said Acoustic Trauma (don't remember one), endolymphatic hydrops, viruses... one hint at semicircular canal deshisence, others said it cannot be it.

Im clueless at this point, I'd like to know if there is something I can do or not. Doctors are more clueless than I am. So, does anyone relate to my story? Do you have an opinion?

Thank you so much for reading, best wishes to all of you...

 

[PaulBe]

Hearing my left eye movement (on left ear).

Isn't this commonly described in the presence of a peri-lymph fistula or something like that?

Anyone?

 

[PaulBe]

From Wikipedia. 'The bizarre phenomenon of being able to hear the sound of the eyeballs moving in their sockets (e.g. when reading in a quiet room) "like sandpaper on wood" is one of the more distinctive features of this condition and is almost exclusively associated with SCDS.'

There's other stuff there that seems relevant to what you're describing. Worth a look. Like most of us here you need to do your own research because as you've seen Medical help is not very organized, certain or interested in these topics.

 

[Aaron123]

Superior Semicircular Canal Dehiscence

Patients with SSCD may also complain of symptoms such as hearing their eye movements, hearing their own voice too loudly in the affected ear (autophony), or having a distorted sensation of sound in the affected ear during activities such as running. These auditory symptoms and signs are also manifestations of the third mobile window created by the dehiscence. Bone-conducted sounds are amplified by the effects of the dehiscence, whereas the energy from air-conducted sounds is partially shunted away from the cochlea and through the dehiscence. - See more at: http://vestibular.org/superior-canal-dehiscence-scd#sthash.U8dDzdhu.dpuf

from http://vestibular.org/superior-canal-dehiscence-scd

also information at http://www.livescience.com/15875-medical-mystery-hear-eyeballs-move.html
http://www.bbc.com/news/uk-england-oxfordshire-14308474

 

[arg_mm]

one of the more distinctive features of this condition and is almost exclusively associated with SCDS.

Hey @PaulBe, thank you so much for responding. SCDS, aka Semicircular Canal Dehiscence, I found that online and took it to some doctors, also sent emails about it. SCDS is not very well known in my country, at least regular ENTs, they were oblivious to this condition. And of course, they weren't receptive to what I had to say about it.
I contacted Otoneurologists (via email) to see if this was worth exploring. Most of them said no, because of some patterns and characteristics of my audiogram were not consistent with it. One said it was a possibility, I'd have to travel 600 miles to see him.

I'll look into "peri-lymph fistula", I haven't heard of that before.

Thank you again, any ideas are greatly appreciated!

 

[arg_mm]

Thank you @Aaron123, I guess this is what most resembles my symptoms after all. Anyone here has been diagnosed with Superior Semicircular Canal Dehiscence?

 

[lymebite]

There is a Facebook group with extensive information about diagnosing and treating SCDS:

https://www.facebook.com/groups/221257197900489/

 

[arg_mm]

Thank you @lymebite, Im requesting access now.

 

[lymebite]

@arg_mm, the SCDS Facebook group is very helpful, if you describe your symptoms you will probably get a lot of good advice. I thought I might have SCDS but was tested and did not.

By the way, your fleeting loud tinnitus may be an SBUTT (sudden brief unilateral tapering tinnitus). If it is an SBUTT, it would be nothing to worry about. I get them sometimes - my regular tinnitus will disappear for an instant of silence, then a VERY loud tone will replace it and last for maybe 10 seconds. An SBUTT episode typically lasts less than one minute.

http://www.ncbi.nlm.nih.gov/pubmed/21970850

 

[arg_mm]

Thank you @lymebite ! I already joined the group, very helpful indeed. Very good info on SBUTT, what you describe is very similar to what happens to me. I have never heard of that.
Sorry to keep asking questions, but were the tests for SCDS very harsh on you? I've read that they make you listen to tones at 90 dB? That scares me, to say the least!
Thank you again!

 

[lymebite]

@arg_mm, to check for SCDS, I only did a CT scan of the temporal bones (ears) to check for thinning or a hole. Because the CT scan was fine and my only symptom is hyperacusis, I did not do any other tests.

 

[PaulBe]

One of medicine's greater problems is the tendency to keep a closed mind until every possible box is ticked. Not every symptom in the book has to be present to create a reasonable suspicion that a condition exists or is emerging...just ask the Menierre's guys here. Don't make the mistake many of us make of presuming they are correct when they say no. Many people have bashed their heads against walls to finally get a correct diagnosis from reluctant (and lazy) Medicos.

 

[arg_mm]

Completely agree with you @PaulBe . Ill push forward on ruling this in our out. I had grown tired os so many fruitless doctor appointments, I had kind of lost any hope for it. I've been on the Meniere's path too, but inconclusive.
Ill put myself together again and continue the search for a diagnosis, because obviously there is an underlying condition, this is not an acoustic trauma. I must say though that tinnitus and hyperacusis is what bothers me the most, along with dizziness which happens to be worse these days.

As always, thanks for your advice, I hope you are feeling good and that someday we all get a relief at least.