I've just been diagnosed with Meniere's and obviously quite upset. My situation differs and may be worse than the usual case, since I have complete 100% hearing loss in my left ear that started June 2017 from what they said is a completed unrelated condition. With no warning or symptoms, I just woke up one morning with total hearing loss, Sudden Sensorineural Hearing Loss (SSHL). So I am very paranoid about the hearing in my existing ear. Recently I awoke with severe vertigo. I had this twice before in my life, common/usual version, went away, but unfortunately this is not the normal same vertigo, and I now have some hearing loss in my right ear, which was my "good ear". Diagnosed as Meniere's. Why couldn't the Meriere's hit my bad deaf ear and not my good ear??!!! I was already quite depressed and handicapped with losing all hearing in my one ear, but now this??!! Just very upset. Trying to deal. Afraid. Upset. Just starting to learn more about it, found this site. Any words of wisdom appreciated. Currently since this is new diagnosis, I am on a course of steroids. Any other treatment info after that let me know. I will be seeing my ear doctor again in a couple weeks.
I hear you Christine. I have been completely and permanently deaf in the right ear since 1997 due to surgery for an acoustic neuroma. I also have no balance nerve in that ear, it was severed. In June 2007, i developed cochlear hydrops in my left ear and with it came terrible distortion, tinnitus etc 24/7 and a creeping assault on my balance in that ear. The doctors could do nothing for almost a year and since i had no hearing and balance in the right ear, surgery was out. When they officially said they could do no more (diuretics etc did not help) i read here and talked to my family dr who was getting updates from thr neurotologist. Fast forward, she prescribed acyclovir and in a few months i judged the distortion, my most hated symptom, was 60% improved. At that point i sent a letter to dr derebery at House Ear Clinic in LA and made an apt to see her. I had allergy testing and took famvir. After several years, my hearing in the hydrops ear recovered almost completely (some of the highest range frequencies have a permanent mild loss). Had i not taken antivirals, i believe the disease would have progressed to full blown menieres (vertigo) and loss of all useful undistorted hearing. I believe the allergy treatment brought back the hearing. Now i am ‘normal’ for my age 69 in hearing and my balance is good, all the balance issues that were starting before antivirals have resolved completely. I cant say what the future will bring because there are little remnants i can recognize but it has been 10 years now and i rarely think about any of this except when i read on this page. btw, i remmber the extremem distress, crying all the way home from trh neurotologist’s office the day he said he could do no more, telling my husband maybe i could get a cochlear 8mp,ant if it got bad enough ... what helped me emotionally at that time was a private yoga teacher. She worked with me, all modified poses etc given my age, and i did an hour practice every day. It calmed me enough to talk to my famiky dr calmly and discuss fairly dispassionately the options etc. When i told her that some people on this forum said antivirals worked she said ‘if you want to try it, i will prescribe it’. Neither of us was convinced but she saw little harm. Antivirals have helped a lot of people here but certainly not all. You know from your history all the weird possibilities with ears, so make sure your dr does a full workup and rules out other things. Also consider migraine which affects a lot of people. You will find many kindred souls here and many options. Think of it like a job ahead of you not a sentence. Good luck.
Btw, you may well have menieres in the bad ear too and just not know it if the balance nerve in that ear is severed. I believe i was/am bilateral, just no way or reason to test it. Also, i was told by my doctors that surgery in one ear(release of sequestered proteins) can cause menieres in the good ear. Go figure.
"Also, i was told by my doctors that surgery in one ear(release of sequestered proteins) can cause menieres in the good ear." Whoa, this is concerning. I am contemplating surgery as we speak. Christine, you've got some good wisdom from June. I hope you can embrace the diagnosis and find some things that work for you. I've been grateful for this site and the kindness and generosity of people here. Good luck.
Clare, what they told me specifically was that acoustic neuroma surgery hich is on the 8th nerve was known to be associated with menieres in the unoperated ear. Perhaps it is not associated with your contemplated surgery. Even with AN surgery, it is a risk not a given.
Hi Christine, I definitely feel for you, as I am feeling the exact same way. Diagnosed 8 months ago, currently in graduate school full-time, piling up student loan debt, and here comes this weird Meniere’s diagnosis. Mine has progressed to vertigo episodes that are starting to impact my ability to complete clinical requirements for school. I hope you get some relief from the steroids, and I hope you are doing ok coping with all of this.
I too was struggling when I had my last severe vertigo attack. I too am soo thankful for this forum because I received much support and info. here. I started on the supplement regimen in the JOH data before the appt. I had made with a NeuroTologist. I had tests including an MRI of my head. I have benefited by June's posts and some people that I don't see posting here anymore. There is a search window here. After starting on antiviral med. I have had only a few vertigo attacks and no vomiting with vertigo. I also have as needed medication that I take as soon as I feel dizzy and nauseous. My best to everyone.