Hi I'm new to the forum and this is my first post. I'd like to tell my story. It's going to be a very long post but I'll really appreciate anyway who takes the time to read it. As you probably know very few people even know about Meniere's disease so there no-one I can talk to who will understand. Six years ago, back in October 2017, I started having tinnitus in one ear. I didn't know what tinnitus was at the time, I just thought my ears were blocked with ear wax, so I went to a centre to have it removed. The doctor there told me it wasn't ear wax, he thought it was pressure in the middle ear, so he advised me to get a hearing test, a tympanogram, and then go see an ENT. I had a hearing test and went to see an ENT. Turned out I had low frequency hearing loss in my right ear, my left ear was fine. The hearing loss surprised me because I've never had any trouble hearing things around me. He referred me to get an MRI to rule out an acoustic neuroma. Stupidly I didn't pursue this at the time as I the tinnitus shortly went away. In fact it went away for 2 and a half years and come back mid 2020. It's been on off since then, but it's mild and I can live with it, and as I said the hearing loss didn't really affect me. Fast forward to April 2023, this year. One day the tinnitus got really loud for about an hour, then later that week (April 22nd) I had a vertigo episode which lasted around 5 hours accompanied by really violent vomiting. I was hoping it was just an infection. However 2 weeks later (May 7th) exactly the same thing happened, I woke up and had another vertigo episode, again lasting around 5 hours. I went to an urgent care centre who prescribed me prochlorperazine and advised I do another hearing test and go see an ENT. I had a hearing test, same thing, low frequency hearing loss on the right ear, left ear fine. I went to an ENT, not a very good one, who bluntly told me it was Meniere's but that Meniere's is very very varied and I might not have another episode for the rest of my life. He actually advised I do nothing, didn't even refer me for an MRI which I found strange. I went to another ENT, a much better one, who looked at the 2 hearing tests and said the hearing loss in the right ear had progressed and I probably have Meniere's. He prescribed me Betahistine and said I've been on prochlorperazine for too long and have to wean myself of it. He then referred me to an MRI. The MRI was 2 stage, one without contrast, then they injected me with the contrast and did another MRI four hours later. I asked for the results to be sent to me as well as the referring doctor. When I got the results it said that there is right sided Grade 2 vestibular-cochlear endolymphatic hydrops, but one thing that caught my eye is it said there is "there is only equivocal left sided cochlear endolymphatic hydrops and no vestibular endolymphatic hydrops". I asked the ENT if that means it's gone bilateral. He said equivocal means it's not certain. I asked him if he thought it's gone bilateral. He said as a clinician he believes it. He advised me to get another hearing test and to go from there. However I'm just too scared to get the hearing test now because I'm scared of the result. If it's gone bilateral that means I could go completely deaf. I think it's gone bilateral in the last couple of months because I noticed my alarm doesn't sound as loud as it used to, but I'm not strong enough to hear it being confirmed. Before the worst that could happen is I go deaf in one ear, which I can handle because I got the other one, but now I could go completely deaf in a few years. I'll never be able to enjoy music again, never have a verbal conversation with my friends and family and would find it difficult to hold down a job and function. I'm sorry about the long post guys, I just had to really get it off my chest as in my daily life there's not many people who would understand. I would just like to hear from people with bilateral meniere's who might know about it. Do you know what the chances are of going completely deaf and what's the timeframe? Thanks
Hey, I’m new here but let me offer an opinion and hope. I am a physician but not an ent and while I learned about Meniere’s in med school, I never crossed paths with it until my own journey started. Technically, I don’t have a diagnosis of Menieres because I’ve never had vertigo (knock on wood) I have bilateral tinnitus and episodic ear fullness. For years, I self diagnosed as some eustacian tube dysfunction. I had seen ENTs in the past thinking maybe I had a sinus issue as I would get intense episodes of facial pressure and congestion (often with some ear fullness). In April of 2020 as we were gearing up to deal with COVID and I was pretty stressed I woke up in the middle of the night with horrendous tinnitus, intense fullness and obvious hearing loss in my right ear. I pulled some strings given everything was shut down to get an audiogram and I had low frequency SN loss in my right ear. I was put on steroids and it did nothing. Slowly got better but then I had another attack and another and another. When I get an attack, I get symptoms in my good ear 1/100th of what I do in my right ear. Interestingly, my hearing in my right ear has mostly recovered when not in attack mode. It didn’t do that initially. Even when it felt good, I couldn’t hear bass sounds in that ear. Now, I can. How strange. Of course, when an attack happens (which lasts for days), I can hear squat. I am also very concerned about going deaf. I take solace in Timothy Hains (an otoneurologist with ample experience) opinion that it is rare for both ears to develop severe disease and the vast majority of Menieres patients do not become profoundly deaf nor suffer from bilateral vestibular hypofunction. Even should I become deaf, cochlear implants are generally very successful at restoring hearing and quality of life. I also take solace that people like Alan Shepard, Steve Francis, Kristen Chenoweth, Huey Lewis have all lived full lives despite Menieres. Good luck!
I have one ear deaf for 25 years from acoustic neuroma surgery. The other had cochlear hydrops and recovered for many years and now has a high range hearing loss that prevents me hearing tv or normal busy places. Similar situation with eyes. You just never know but it may not be menieres. The good news is the treatments and hearing aids as well as cochlear implants improve every year. Make sure any surgery you have preserves the nerve to make cochlear implant possible if needed.
I was wondering about cochlear implants, but I heard it's a bit like a robot talking to you and has very limited range. It's a shame because one thing I love doing is learning languages, I'm currently studying Spanish and my dream is to retire in Colombia. If it's limited as it is, imagine how limited it will be in a second language! One can only hope it makes great advances in the next few years. I took a hearing test in May this year and my left ear was fine, so if I do go deaf it'll probably take a few years.
I had my first symptoms when I was 18 or 19 years old. It took about 40 years for Meniere's to attack my other year. You may luck out.
I went about 10 years before it got my other ear. My hearing sucks, but manage with hearing aids with blue-tooth for watching TV and using the cell phone. Hearing has not gotten worse for many years and has leveled off to where it is now. I have had MD for over 30 years.
Which hearing aid company works so well for you? I find that the hearing loss frequency from Meneire's is not the regular hearing loss people get. I would like to find hearing aids makes me hear clearly all sounds. Ive tried Phonak & Phillips. I am not happy with the clarity.