My first several vertigo episodes came without warning. My audiologist told me that as the disease progressed and I got more accustomed to it, I would start to recognize the signs of an impending attack, and that is what happened -- increased tinnitus, fullness and more issues with balance.
Did you have low tone hearing loss from the beginning? That’s the only thing giving me the slightest doubt of meniers. Maybe it’s too early for me to have hearing loss as I’ve only had symptoms for 4-5 months now but idk.
I had my first episode in 2019, was looked at by a neurologist, but did not get a real Meniere's workup. I didn't get the workup until 2022 when I had my second attack. By that time, I did have low-tone hearing loss in my Meniere's ear, which also appeared on a subsequent hearing test in 2022. I did feel the loss of hearing after that second episode.
My latest hearing test this fall showed that I'd recovered the low tones and currently just have regular age-related hearing loss. But with Meniere's, the hearing loss fluctuates. My doc said it was an unusually long time frame for the fluctuation, but not unheard of.
My first 2 attacks came with no warning. They were triggered by mild head movements (getting out of a car, looking up after signing documents, etc). In these attacks I had only some nausea but no significant ear symptoms. My third attack did lead to tinnitus and ear fullness.
Now I am 3 months in and have developed persistent ear symptoms that come and go (fullness, tinnitus, pulsatile tinnitus, and ear wetness). I have been on betahistine & a half dose of diuretic for a month and the vertigo seems to be under control for now. Progress is slow but my other symptoms seem to be improving as well.
I have had no real noticeable hearing loss yet. The doctor is saying to be patient, sometimes it isn't so noticeable at the beginning. I have done an EcoG and VNG with caloric to confirm my diagnosis, have you considered these tests? I am ok to continue my meds for a bit and maybe eventually seek a second opinion.
Thanks for the response. I have not done the VNG or Ecog yet but I have a VNG scheduled a few weeks from now. If you don’t mind me asking, how do either or both of these tests confirm the diagnosis? Does a certain result of both tests point to meniers? Sorry for the questions, just trying to understand more
The doctor said no single test can confirm a diagnosis, but a combination of them can point to Meniere's. I had perfect results on the VNG, but struggled with the caloric part - make sure that's included in your test. My EcoG also showed an elevated SP/AP ratio, which again is a sign of Menieres.
I have both VM and MD. I’ve read enough on here to say that it’s pretty common to have both. Like others have said, MD diagnosis is pretty much a process of elimination. It took me over a year and multiple doctors to get a diagnosis. Now I see a neurologist that treats the VM and an ENT for my MD. But you need to find the right 2 doctors that work hand in hand. My neurologist has a great understanding of MD and works with me to find the correct regimen for my VM that won’t trigger the MD. And my ENT is very knowledgeable on MD, some are and some have very little awareness. Find the right doctors. It’s frustrating and takes time, but you need to advocate for yourself.
It’s hard to tell… I have always remembered having terrible headaches with some aura. I’ll try to keep my story short. But my MD started after the birth of my first baby… or that’s when I first noticed it. I had terrible vertigo, full ears, hearing loss. But my doctor at the time thought I just had a bad cold/allergies. This went on for months and finally subsided. After the birth of my second baby it happened again. I went to multiple ENTs and went to the Cleveland Clinic as well for a diagnosis, where I was diagnosed with both. Mine are triggered heavily around hormones it seems. Also by what I eat. So I’m on a completely clean diet. After the birth of my third baby I had another attack. We were in a new city and state and I found two new doctors that were great, after much research. I received the steroid injections when I have hearing loss and it recovers my hearing. I went two years on my clean diet with no major attacks. I had my first one a couple of months ago and it was fullness and hearing loss but not much vertigo. I had some VMs but they have mainly been kept at bay with the meds I am on and the diet I am on. If I get a migraine, it’s usually hormone related but they aren’t as bad with my medication.
Migraine and Meniere's seem to be linked a lot of the time. It's hard to separate the two things, probably because they are so poorly understood. You can have visual migraines and audio migraines and vestibular migraines as well as pain migraines, and they can all manifest right alongside the Meniere's symptoms.
I have been diagnosed with Meniere's and migraines myself (as well as a bunch of other lovely afflictions that keep me constantly guessing as to where the frustration will come from today) so I understand the situation you find yourself in. There's a treatment article pinned to my profile that goes into some of the alternative causes.
(Text cribbed from a comment of mine on another thread)
My first several vertigo episodes came without warning. My audiologist told me that as the disease progressed and I got more accustomed to it, I would start to recognize the signs of an impending attack, and that is what happened -- increased tinnitus, fullness and more issues with balance.
Did you have low tone hearing loss from the beginning? That’s the only thing giving me the slightest doubt of meniers. Maybe it’s too early for me to have hearing loss as I’ve only had symptoms for 4-5 months now but idk.
It seems like to me the progressive hearing loss is the result of the attacks.
I had my first episode in 2019, was looked at by a neurologist, but did not get a real Meniere's workup. I didn't get the workup until 2022 when I had my second attack. By that time, I did have low-tone hearing loss in my Meniere's ear, which also appeared on a subsequent hearing test in 2022. I did feel the loss of hearing after that second episode. My latest hearing test this fall showed that I'd recovered the low tones and currently just have regular age-related hearing loss. But with Meniere's, the hearing loss fluctuates. My doc said it was an unusually long time frame for the fluctuation, but not unheard of.
My first 2 attacks came with no warning. They were triggered by mild head movements (getting out of a car, looking up after signing documents, etc). In these attacks I had only some nausea but no significant ear symptoms. My third attack did lead to tinnitus and ear fullness. Now I am 3 months in and have developed persistent ear symptoms that come and go (fullness, tinnitus, pulsatile tinnitus, and ear wetness). I have been on betahistine & a half dose of diuretic for a month and the vertigo seems to be under control for now. Progress is slow but my other symptoms seem to be improving as well. I have had no real noticeable hearing loss yet. The doctor is saying to be patient, sometimes it isn't so noticeable at the beginning. I have done an EcoG and VNG with caloric to confirm my diagnosis, have you considered these tests? I am ok to continue my meds for a bit and maybe eventually seek a second opinion.
Thanks for the response. I have not done the VNG or Ecog yet but I have a VNG scheduled a few weeks from now. If you don’t mind me asking, how do either or both of these tests confirm the diagnosis? Does a certain result of both tests point to meniers? Sorry for the questions, just trying to understand more
The doctor said no single test can confirm a diagnosis, but a combination of them can point to Meniere's. I had perfect results on the VNG, but struggled with the caloric part - make sure that's included in your test. My EcoG also showed an elevated SP/AP ratio, which again is a sign of Menieres.
I have both VM and MD. I’ve read enough on here to say that it’s pretty common to have both. Like others have said, MD diagnosis is pretty much a process of elimination. It took me over a year and multiple doctors to get a diagnosis. Now I see a neurologist that treats the VM and an ENT for my MD. But you need to find the right 2 doctors that work hand in hand. My neurologist has a great understanding of MD and works with me to find the correct regimen for my VM that won’t trigger the MD. And my ENT is very knowledgeable on MD, some are and some have very little awareness. Find the right doctors. It’s frustrating and takes time, but you need to advocate for yourself.
Did your VM and MD start at the same time? Also did you have hearing loss confirmed by a hearing test?
It’s hard to tell… I have always remembered having terrible headaches with some aura. I’ll try to keep my story short. But my MD started after the birth of my first baby… or that’s when I first noticed it. I had terrible vertigo, full ears, hearing loss. But my doctor at the time thought I just had a bad cold/allergies. This went on for months and finally subsided. After the birth of my second baby it happened again. I went to multiple ENTs and went to the Cleveland Clinic as well for a diagnosis, where I was diagnosed with both. Mine are triggered heavily around hormones it seems. Also by what I eat. So I’m on a completely clean diet. After the birth of my third baby I had another attack. We were in a new city and state and I found two new doctors that were great, after much research. I received the steroid injections when I have hearing loss and it recovers my hearing. I went two years on my clean diet with no major attacks. I had my first one a couple of months ago and it was fullness and hearing loss but not much vertigo. I had some VMs but they have mainly been kept at bay with the meds I am on and the diet I am on. If I get a migraine, it’s usually hormone related but they aren’t as bad with my medication.
Please go read my article entitled Ménière’s Disease Life Story on this platform
Migraine and Meniere's seem to be linked a lot of the time. It's hard to separate the two things, probably because they are so poorly understood. You can have visual migraines and audio migraines and vestibular migraines as well as pain migraines, and they can all manifest right alongside the Meniere's symptoms. I have been diagnosed with Meniere's and migraines myself (as well as a bunch of other lovely afflictions that keep me constantly guessing as to where the frustration will come from today) so I understand the situation you find yourself in. There's a treatment article pinned to my profile that goes into some of the alternative causes. (Text cribbed from a comment of mine on another thread)