Anyone Been Diagnosed with Cochlear Migraines?

[Pre55ure]

I was recently diagnosed with cochlear migraines as a reason for my hearing loss and tinnitus. It is a relatively "new" clinical diagnosis, but based on my experience I think it is probably accurate. Just wondering if anyone else here has had a similar diagnosis?

 

[Juan]

I was recently diagnosed with cochlear migraines as a reason for my hearing loss and tinnitus. It is a relatively "new" clinical diagnosis, but based on my experience I think it is probably accurate. Just wondering if anyone else here has had a similar diagnosis?

How were you diagnosed with that? Which tests did you have?

 

[Pre55ure]

I don't know if there are any tests that can give a "positive" diagnosis, and I was skeptical at first but my symptoms have responded well to the medication that the doctor prescribed, and after reading the (little) information I have been able to find about it, I think the diagnosis fits.

I first lost about half the hearing in my right ear about a year ago. It was initially diagnosed as "sudden sensorineural
hearing loss" and doctors assumed it was possibly viral. I did all the steroid shots and everything and nothing made any difference. Hearing stayed relatively stable in that ear until until early December of this year when I started having episodes of intense tinnitus (like 10/10, so loud that it would obscure all other sound from that ear) that would come on and last for 8 to 12 hours, and my hearing in that ear would fluctuate during the episode and then be "stuck" at wherever it was when the episode ended, and would stay this way until I had another episode. (Hearing was usually worse).

This was happening sometimes back to back day after day and then sometimes I'd have a week inbetween episodes.
At this point I seemed to had pretty much stumped all the doctors that I had gone to - Meniere's disease seemed to be the general consensus, but I didn't have any vertigo, I also had an MRI looking specifically for Endolymphatic Hydrops (which is very common with Meniere's) that came back negative.

Around the middle of January I saw a new doctor who specializes in inner ear disorders and he thought that I likely was suffering from cochlear migraines. It seemed like a very odd diagnosis to me. I have occasionally gotten migraines (with aura) for my whole life, but only maybe twice a year or so? I do not get headaches or any other common migraine signs when I am having one of these "episodes". I'm certainly not a person who would have said that migraines were a problem for.

However, since seeing this doctor and starting on a mix of medications designed to reduce migraine occurrence and severity, the tinnitus during an episode has probably been cut down by 2/3rds and the length has gone from 8 -12 hours down to 2 or less, and my hearing in that ear almost always resolves back to it's pre - December "bad" baseline but not scary "I can't hear anything out of that ear anymore for a week" level.
So despite my initial skepticism, I am pretty convinced that this doctor got it right. My hope at this point is that things will stabilize at this level (knock on wood).

 

[FGG]

I don't know if there are any tests that can give a "positive" diagnosis, and I was skeptical at first but my symptoms have responded well to the medication that the doctor prescribed, and after reading the (little) information I have been able to find about it, I think the diagnosis fits.

I first lost about half the hearing in my right ear about a year ago. It was initially diagnosed as "sudden sensorineural
hearing loss" and doctors assumed it was possibly viral. I did all the steroid shots and everything and nothing made any difference. Hearing stayed relatively stable in that ear until until early December of this year when I started having episodes of intense tinnitus (like 10/10, so loud that it would obscure all other sound from that ear) that would come on and last for 8 to 12 hours, and my hearing in that ear would fluctuate during the episode and then be "stuck" at wherever it was when the episode ended, and would stay this way until I had another episode. (Hearing was usually worse).

This was happening sometimes back to back day after day and then sometimes I'd have a week inbetween episodes.
At this point I seemed to had pretty much stumped all the doctors that I had gone to - Meniere's disease seemed to be the general consensus, but I didn't have any vertigo, I also had an MRI looking specifically for Endolymphatic Hydrops (which is very common with Meniere's) that came back negative.

Around the middle of January I saw a new doctor who specializes in inner ear disorders and he thought that I likely was suffering from cochlear migraines. It seemed like a very odd diagnosis to me. I have occasionally gotten migraines (with aura) for my whole life, but only maybe twice a year or so? I do not get headaches or any other common migraine signs when I am having one of these "episodes". I'm certainly not a person who would have said that migraines were a problem for.

However, since seeing this doctor and starting on a mix of medications designed to reduce migraine occurrence and severity, the tinnitus during an episode has probably been cut down by 2/3rds and the length has gone from 8 -12 hours down to 2 or less, and my hearing in that ear almost always resolves back to it's pre - December "bad" baseline but not scary "I can't hear anything out of that ear anymore for a week" level.
So despite my initial skepticism, I am pretty convinced that this doctor got it right. My hope at this point is that things will stabilize at this level (knock on wood).

Was this at House Ear by any chance? A friend got diagnosed with the same thing after zero diagnostics apart from an audiogram. She had never even had any type of migraine in her history (including vestibular). It didn't make any sense to me. At least yours was episodic so it potentially makes sense.

 

[Pre55ure]

Was this at House Ear by any chance? A friend got diagnosed with the same thing after zero diagnostics apart from an audiogram. She had never even had any type of migraine in her history (including vestibular). It didn't make any sense to me. At least yours was episodic so it potentially makes sense.

Thats interesting. Did she ask how ( or why) the doctor came to that conclusion? Did she have any other symptoms that might have pointed in that direction? I was surprised by the diagnosis at first as well, but I can see (in hindsight) that if you were a doctor and had seen this type of thing in the past, you might be able to put all the pieces together pretty quickly (particularly if this is your specialty). However, basing it all off of one audiogram seems a little weird. Do you know if her audiogram showed low frequency hearing loss?

And to answer your question, no - I was diagnosed at University of California Irvine (at the medical center/hospital).

 

[FGG]

Did she ask how ( or why) the doctor came to that conclusion? Did she have any other symptoms that might have pointed in that direction? I was surprised by the diagnosis at first as well, but I can see (in hindsight) that if you were a doctor and had seen this type of thing in the past, you might be able to put all the pieces together pretty quickly (particularly if this is your specialty). However, basing it all off of one audiogram seems a little weird. Do you know if her audiogram showed low frequency hearing loss?

And to answer your question, no - I was diagnosed at University of California Irvine (at the medical center/hospital).

She has zero clue how the doctor came to that and said they didn't explain when she asked. She has only high frequency, non-fluctuating hearing loss starting at about 6000 Hz. It was bilateral and sudden so she was told it must be migraines but she had also been on IV Clarithromycin (though it was 4 months before) for pneumonia. She also has a lot of unexplained nerve pain, too. None of it seems to fit (at least in her case).

 

[Deniseh]

Hi @Pre55ure

When I attended ENT last year she did a few tests, checked balance and eye movements, stuck a camera down my nose (sorry I don't know the technical terms) and shone a bright light into my eyes, I also went for an MRI and my hearing test came back ok.

Went private so cost a wee bit and the results were... you 'COULD' have vestibular migraines or early Ménière's (even though no vertigo) but probably caused by b12 deficiency and acid reflux... mmm otherwise no idea.

Moral of the story is ENTs have no clue!!!!!!

 

[Purva]

Hi Deniseh..
Is your tinnitus coming from vascular loop? If NO , then is the vascular loop going to affect you in any way in life?

 

[Juan]

However, since seeing this doctor and starting on a mix of medications designed to reduce migraine occurrence and severity, the tinnitus during an episode has probably been cut down by 2/3rds and the length has gone from 8 -12 hours down to 2 or less, and my hearing in that ear almost always resolves back to it's pre - December "bad" baseline but not scary "I can't hear anything out of that ear anymore for a week" level.
So despite my initial skepticism, I am pretty convinced that this doctor got it right. My hope at this point is that things will stabilize at this level (knock on wood).

How are you doing with your migraines nowadays? Could you share with us which medication mix worked for you?

 

[Tweedly]

How are you doing with your migraines nowadays? Could you share with us which medication mix worked for you?

That's something I am curious about as well @Pre55ure.

I've been diagnosed with an "altered migraine pattern", but not specifically cochlear migraines. I get attacks with aural fullness and an increase in tinnitus.

My neurologist prescribed me Amitriptyline and later Beta Blockers (I'm taking both).

What meds were you prescribed?

 

[Juan]

What meds were you prescribed?

I was on Higrotona and Clinadil for a month but it did nothing. I am trying to read more about how cochlear damage could turn into cochlear hydrops or Secondary Endolymphatic Hydrops, which seems to be a sort of general cathegory for pretty much everything that cannot be explained about cochlear deterioration...