How to Find the Right Doctor to Conquer Meniere’s Disease
When you have Meniere’s disease, finding a great doctor can be extremely challenging.
It’s such a devastating disorder, and its rarity renders most general practitioners, and even many specialists, inexperienced at treatment. And that’s unfortunate because it’s way too easy to lose hope without proper medical care and guidance.
If you know you have Meniere’s disease then you already know what it means to suffer. A diagnosis is only possible by ruling out all other known causes of your symptoms. The diagnosis gives your suffering a name and context, but it’s only step one.
Step two is setting yourself up for success, and finding the right doctor is possibly the single most important thing you can do. Your doctor’s personality and mindset can make or break you. The right doctor can be the force necessary to move you toward acceptance and health. The wrong doctor can be your undoing.
Start by answering a few simple questions about your current doctor:
- How is your doctor’s bedside manner? Did he approach your case with compassion and kindness?
- My first doctor definitely didn’t. It caused me a lot of unnecessary pain and suffering.
- Your doctor needs to have a good bedside manner; it’s crucial to your road to recovery.
- After you saw your doctor, were you left with a feeling of hope or hopelessness?
- The answer speaks to your doctor’s mindset and, as a consequence, your mindset.
- If your doctor does not leave you feeling hopeful, find a new doctor.
- Did your doctor answer all of your questions?
- It’s important to feel that your doctor is on your team.
- If he isn’t supportive in this way, you may be left feeling like you’re all alone.
- Lastly, how did you feel when you left from your appointment?
- If you felt unsettled or unsure about your doctor in any way, don’t hesitate to find a new one.
The Right Doctor Can Change Everything:
My first doctor was terrible. I left his office a miserable wreck, overwhelmed by fear and confusion. But my second doctor was incredibly kind and compassionate. He was patient with me and answered all of my questions. He saw that I was scared and painted a picture of an optimistic future. He explained that while there were many lifestyle changes I should make to help manage my symptoms, there was no need to think anything needed to be permanent.
He explained that the disease tends to change, and while that could be for the worse, it could also be for the better. He recounted the successful stories of several of his patients. He reassured me that if I was able to get a handle on my symptoms, there was no reason to expect to lose my hearing, that everything would be okay. Without question, he saved my life.
He filled me with the hope I desperately needed. I now saw potential where there was once only fear. He showed me my situation through a new lens, a new mindset. He gave me my power back. It brings tears to my eyes thinking back to this defining moment in my life. It was like a light switch went on in my brain. Meniere’s disease would never define me. It didn’t have the power anymore. It makes me shudder to think of what the shape of my life might have looked like had I never met this man. Finding the right doctor literally changed everything for me.
How to Find The Right Doctor:
Let’s start with the basics. A physician who specializes in treating conditions affecting the ears, nose and throat is known as an otolaryngologist, or ENT for short. The problem is that many ENTs do not have a lot of experience, if any, in treating Meniere’s disease. The good news is that some ENTs go on to sub-specialize further. ENTs who sub-specialize in treating neurological conditions of the inner ear, or in other words, balance and hearing disorders, are called Neurotologists. This is the type of specialist you want to see. They will have the most experience treating Meniere’s disease by far. The winning combination to look for is a Neurotologist with a great personality.
Over the last several years, doctor rating websites have sprung up all over the internet. However, one stands out above the rest: Healthgrades.
Not only can you search for doctors by location and specialty, but you can find patient satisfaction information as well. Patients fill out anonymous surveys that cover the entirety of their experience with a doctor. Healthgrades combines all of this data into a 5-star rating system, just like you would find on Amazon.com. You can also find information on the doctor’s practice, facilities, possible malpractice suits, awards they’ve won, the conditions they treat, and much more.
It’s an empowering website. If I had known about Healthgrades sooner, I could have easily found the low rating of my first doctor. It would have saved me considerable pain. Search for Neurotologists in your area, but be sure to check their rating and if they list Meniere’s disease under the conditions they treat.
If there are none in your area, you may have travel. But before you do, you can try calling highly rated Neurotologists in other areas and ask if they can refer you to a good local ENT. Some ENT’s are in fact experienced in treating Meniere’s disease, they’re just harder to find.
Patient referrals are a valuable resource, too. If you have already found a great doctor, leave a comment below!
46 thoughts on “How to Find the Right Doctor to Conquer Meniere’s Disease”
Are now cured?
I’m definitely not cured but I’ve been symptom free for years now. I still avoid certain triggers but aside from that I feel healthier then I’ve ever been. I discovered a lot of really unique and interesting treatment strategies over the years and decided to start writing about them. There is far more negative info out there then positive. I wanted to help spread hope and share what I’ve learned.
my dad was diagnosed with this disease and has not been able to get the symptoms under control despite low sodium ect. You mentioned you have been symptom free and have figured out triggers, if possible please email me I am curios what you have to say in order to get the symptoms under control.
thanks for your time,
Hi Michelle, I would say I’m mostly symptom free, most of the time. But it takes a lot of work on an ongoing basis. If you’re dad was recently diagnosed, I highly recommend taking the time to read this post and all of the posts it links to. It’s everything I wish I knew early on: https://mindovermenieres.com/newly-diagnosed
Hi Glenn happy for you my husband s been having vertigo for months he has memories for yrs don’t know what to do has been to specialists he is at his wits end maybe you can give us some ideas
Hi Joann, I highly recommend starting with the posts listed in this guide: https://mindovermenieres.com/newly-diagnosed – it’s everything I wish I knew early on in my diagnosis when I was really struggling. And feel free to have your husband reach out to me directly at firstname.lastname@example.org
I enjoyed all of your articles and can relate to each and every one. I continue to learn and would like to stay hopeful, not defeated. I wish you health and happiness.
Thanks Nina, I really appreciate the kind words!
“He reassured me that if I got my symptoms under control my hearing would never be lost, that everything would be OK. Without question, he saved my life.”
I just starting reading your blog this morning and have truly enjoyed your writings. I’ve had meniere’s for 20 years with many doctors. I have lost most of my hearing, deaf in right and maxing out hearing aid in left. I’m close to threshold for cochlear implant. How can your doctor tell you that your hearing will never be lost? Everyone’s meneire’s is different but significant hearing lost is a very common trait and marker for diagnoses. Just being real and not trying for ‘Debbie Downer’. I think self honesty is critical for a positive life with meniere’s.
Hi Matt, you’re not being a downer at all, that is a totally valid question. I was fortunate that I found a good doctor fairly early on. I had only had a handful of severe vertigo attacks by this time, and had only been having symptoms for about 6 months. What my doctor was saying, is that because my hearing loss was not yet permanent, if I could get manage my symptoms to the point where I would stop having attacks, that there wasn’t a reason to expect to lose my hearing. I believe he was trying to give me hope. At the time my hearing tests did show hearing loss, but it was attributed to the aural fullness. When my hearing was retested 6 months later, the ear pressure had dissipated and my hearing was pretty much back to normal.
I do agree that self honesty is a critical part of the journey. But I also know how motivated I was to take action after my doctor inspired hope in me in this way. I had the newly diagnosed in mind when I wrote that post. But you are absolute correct. Hearing loss is a possibility for many and an eventuality for many more.
The key to understanding Meniere’s Disease or Meniere’s Complex is to understand Migraine. Although only a small percentage of neurotologists in the United States have gravitated towards understanding Meniere’s Disease within the context of migraine disorder, there appears to many features of this disorder that overlap with the symptoms experienced by many patients with headache/migraine disorder. Simply put, if the visual pathways in the brain can be affected by an underlying mechanism within the context of migraine disorder, why not the cochlear-vestibular (hearing and balance) pathways.
I was hit with Ménière’s disease in 2002. After several doctors, got to a neorologist- menieres specialist. Testing was done, then his nurse had me come in for exercises. Got better, vertigo stopped after 2 years. After that, mostly I just learned the things that bothered me, stopped those. Am SO much better today. I did not lose my hearing — maybe slightly in one ear. And I do carry Dramamine in my purse at all times still. A quarter to half of that pill stops any problem. Hope you can trust that proper care and treatments for the problem will make things better. I do know this is a personal thing.
Truth is, this is a wretched disease!!
So glad you were able to find a good doctor Sharon and thank you for sharing your story!
steve and Moon song phillips.
Your information was very helpful to us. May we ask which Doctor you sought out to get the relief that your post seems to present, please. THANK YOU
Hi I live in Fresno Ca. I have literally had every scan, blood test, vision exam and even a VNG. I have seen 4 specialist including ent, cardiology, neuro. I had three drop attacks last year and two of which landed me in ambulance. I am 30 years old and extremely healthy and fit. Since last attack in march of 2016 I have been constantly off balance with only a few weeks of normality,mostly in summer. Once winter hit it can
Back with a vengeance. I have seen an ent in Fresno and he had me do a VNG. I passed my hearing and VNG he is convinced I don’t have meniers. He also things 30 is too young to have this…..However, my left ear has now started to ring constantly and is slightly muffled when I am having an off balance day. It also sometimes hurts like an ear infection but my dr says my ear looks great inside.I have read that a VNG is not confirmatory for MD. Do you have any suggestions for me on who to sgee is CA that may understand my symptims better? Since last attack I cut caffeine and also cut salt way down. I excercise daily which is helping a lot. My grandmother also had MD. Super fed up with Dr. not listening to me. Any suggestions? THX.
Hi Jamie, my first suggestion is to find a Neurotologist to see instead of a regular ENT. They are ENTs who have subspecialized in treating balance and hearing disorders, and have way more experience treating and diagnosing Meniere’s disease and other vestibular disorders. The only problem is that after searching for Neurotologists near Fresno, it appears as there aren’t any. You may have to drive a few hours unfortunately: https://www.healthgrades.com/usearch?where=Fresno%2C%20CA&city=Fresno&state=CA&pt=36.760658%2C-119.803811&what=Neurotologists&searchType=PracticingSpecialty&entityCode=PS646
Second, if you are responding well to lifestyle changes, I would put a little bit of extra effort in that. Here are two posts that you will find helpful in that regard:
Thank you very much!!
My ENT (Meniere’s specialist) prescribed a migraine medicine to try when vertigo starts. I’ve used it once and I didn’t go into spinning and vomiting mode. Any info on the migraine connection with Meniere’s?
Hi Cathy, there is definitely a connection! This is a good post to get you started: http://www.chronicadvocate.org/menieres-migraine-or-both/
May I ask what was the migraine med prescribed, please?
i’m new to this disease and it sucks!!! I’m already ready to throw in the towel!!!What were your triggers and what do you do to manage symptoms??? I’m in probably my 3rd month since it started and am having vertigo and vomiting at least once a week
Hi Andrea, I know how overwhelming it all is. But I want you to know that there’s so much hope! Before you read anything else, read this (and all the posts it links to). It’s everything I wish I knew when I was first diagnosed and it will answer your questions: https://mindovermenieres.com/newly-diagnosed
I am so thankful I stumbled on this site when searching for info to print out for my family so they can get a better sense of understanding when I say THIS DISEASE IS HORRIBLE!!! I have been sick since August 6, 2017, got the rug pulled out from under me and forced to retire b/c the symptoms were relentless and the testing and specialists and follow-ups were lengthy. I was out of work so long I used up every sick day, personal day and vacation day and all my disability time. I have had all the traditional treatments including injections into the ear- they were short-lived. My current treatment is routine Valium everyday which I have been on for 2 years. And Scopalamine patch & Zofran as needed when vertigo hits. The number of vertigo attacks has lessened over time but I am left with unbalanced and unsteadiness- I have had several falls. I now say ‘I am stably sick.’ my husband has to help me out of bed or down the stairs sometimes (I have a tight hold on that guard rail!) Yes I did and do have hearing loss only slightly worse since first tested. The full-feeling and tinnitus continue. I cannot drive or ride a bike or do my aquacise. What is way worse than these listed symptoms is the BRAIN FOG that has robbed me of “ME”- the things I can no longer do that I loved and made me me. B/C of the brain fog, I can’t process info and short term memory is gone so I can’t read anymore. There is a LOT that I can’t do anymore- I was an amazing Nurse and could multi-task & had strong organizational skills. I danced ballet! I taught religious ed and was youth minister. I was a plate-spinner (google it) if you are in your 60’s, you will remember the guy on the Ed Sullivan show- that was how I lived. Now, I can’t talk and do dishes at the same time. Enough with the “I can’ts”. I only shared them to let you know (and ME!) that you are NOT alone. This disease is horrible but I do not focus on what I can’t do anymore- but on what I CAN do. Always had a passion for gardening- now I have the time to really enjoy it to the best that my body allows. LOVED camping!!! Went last month for the 1st time since being sick- I may not remember it but pictures show I must have had a great time! BTW- I have been nicotine/caffeine/salt and ETOH-free. I was told 2 yrs ago I could be like this the rest of my life-OR-go into remission. They just don’t know a lot about this disease. We are discussing going to the Meniere’s specialist team at Mt. Sinai Hospital in New York. But there is no cure for this- and I just don’t have the energy to go from coast to coast seeing doctor after doctor. Thank you all for your sharing- this is way more supporting than you will ever know!!! Cheryl DeMillo
I get relief from my Meniere’s by taking Betahistine on a regular basis (8 mg., three times per day). It’s not approved by the FDA but it has been prescribed in Europe (especially the U.K.) for Meniere’s for many years. I have taken it daily for nearly two years and I have never experienced any side effects. Since it’s not approved by the FDA you need to buy it at a compound pharmacy, and it’s pretty expensive (my insurance plan won’t cover it). You should be able to get a prescription from a good ENT or from a Neurotologist. By combining a low sodium diet with daily use of Betahistine I got my life back. I have not had a vertigo attack in nearly two years and my hearing loss has stabilized. I’m 62 and I don’t need a hearing aid. The one symptom I still have is fairly loud tinnitus, but I can live with that. Of course, everyone is different and this may not work for you, but it may be worth a try. I was miserable for six months (four trips to the ER with major vertigo attacks) before I finally found the right doctor, a Neurotologist who practices at Georgetown Hospital in Washington, DC. He prescribed Betahistine and a low sodium diet and I got my life back. I hope this is helpful to others.
Thanks for the information on finding a Neurotologist. It took me several hours of searching online and I will have to travel about 100 miles each way, but hopefully I can find some relief. I have been to 2 ENT’s. One said I had it even though I had no symptoms except for hearing loss and the other said I didn’t have menieres since I had no symptoms. After seeing the doctors I started having symptoms of vertigo and vomiting. Since some episodes were months apart, I was thinking maybe I was lucky and didn’t have it, but now I am convinced I do. I purchased your book and I hope to learn more so I can get some normalcy back to my life.
Best of luck Gary! I hope your appointment goes well! And I also hope you get a lot out of my book. If you ever have any questions or want to chat, I’m always around: email@example.com
I’ve been having vertigo episodes for a month now and my ENT has scheduled a consult with another doctor about getting a Gentamicin and steroid injection. I was told it was successful in 9 out of 10 people and that it usually worked for about 5 years. Have you heard of anyone having this procedure and the outcomes?
Cindy I had my first series of steroid injections last year. I’m 34, I exercise daily eat healthy drink only water and in two weeks I have to go have the injections again because I’m having my attacks daily and I’m having drop attacks. I’m raising 2 small children by myself I really don’t know what else to do.
The injections did work great till about a month ago and I really don’t know what happened
I had it done about 5 years ago and it worked for me. Unfortunately, I am starting to get the symptons again.
Thank you & everyone’s comments, information, & experiences w/Menieres.
Is there any test or anything that will absolutely confirm I have or don’t have menieres?
Thank you again!
Unfortunately no. We don’t know what causes Meniere’s disease. Diagnosis is a process of eliminating all other possible known causes of your symptoms.
right you are l.I also have some problems with my ear and throat and was showing to an ent great neck and I do accept as true with that you have to show yourself to a particular expert for you trouble, in preference to displaying it to a ordinary clinical medical doctor.
Anyone knows good neurootologists in Atlanta, GA?
My hubby has a big time attack and got so scared that he may not able to drive anymore.
Your opinion matters to us.
Hi Natalie, I don’t know anyone off hand, but I’m sure if you look on healthgrades.com you’ll find a bunch of high rated neurotologists.
I’ve been diagnosed with meneires for a year now.
I’ve had a few ER visits because of it. I’m only 28 years old. Very healthy and fit. I’m currently seeing an ENT where I get steroid injections every two months. Witch really sucks. He says my only other option is too have a brain surgery to KILL my ear.
I am also going to a chiropractor who specializes in the upper neck. He also studies meneires disease, he thinks from all my neck injures in the past(witch I’ve had a lot) is causing problems with fluid flow to my brain. And I see him every two-three weeks to get my next adjusted. It gets very old going to these doctors all the time.. but after my injections and my chiropractor visit I do pretty well for a few weeks. I feel I’m missing something.. I can’t keep going through this same routine the rest of my life.. it really sucks! Especially with a wife and kids that count on me..
Hi Dane, a little background: I’m 49 and was diagnosed with Meniere’s in 2012. I have had some success with diet changes, exercise, and chiropractics and acupuncture, but as others have noted, Meniere’s often changes so…I am always prepared for the next round. With that said, there is a surgical option other than a labyrinthectomy (which will stop the vertigo, but renders you deaf in the affected ear). It is called vestibular neurectomy. Basically, they drill a quarter-sized hole behind your ear and sever the vestibular nerve while leaving the 2 other nerves in the same location (for hearing and facial muscle movement) intact. Apparently, the treatment is highly effective. The downside is that it is truly “major” surgery (it’s brain surgery, really), and has all the risks that go along with that. You also go through a 6 week to three month rehabilitation where you essentially have to learn to walk again/find your balance again–because your brain effectively has to adapt to having one inner ear, and not two. There is also the chance that you develop bilateral Meniere’s (although I think that is pretty rare), and then there is no option. You have to have at least one intact vestibular nerve in order to have balance. So personally, as I also have minor kids that live with me/depend upon me, I am trying to manage the symptoms as long as I can before I go this route. But it certainly is an option. Dr. Akira Ishiyama is a specialist in this surgery at UCLA in Los Angeles. Good luck…
So i’m not sure if this comment will get to anyone just due to the fact that i’m reading this is January of 2019. and the last comment was may of 2018.
My point is my mom has meniere’s disease got diagnosed with it in 2011. They went in and did surgery where they cut her balance nerve on her left side. they said this should help slow the vertigo down (which it did not) they also went in and did the injections in her ear. that did help for a little while, but here recently she has been having bad episodes like she did when it first started up.
has anyone else experienced this after a few years of having this disease?? also we are based out of Texas does anyone by chance maybe have suggestions on a doctor she could see on this.
any suggestions please i want to help my mom out as much as possible.
I am also reading this site in January 2019. I have severe Ménière’s disease I have drop attacks I haven’t had surgery but I have a loud tinnitus as I had 13 spells in 11 days recently four of them were major so I feel your pain for your mom but this is just absolutely terrible I’m trying to get some hope have been many doctors I’m on CBD I’ve been to upper cervical Doctors vestibular doctors nothing seems to help . My name is Greg and I do hope you get help
I have had Meniere’s for 10 years. Tested, diagnosed, etc. Have tried steroid injections, medicines, diuretic daily and nothing has helped. I have seen many doctors. ENT’s, Upper Cervical chiropractor, traditional chiropractor, acupunture. Very discouraging for sure.
Does anyone have the name of a Meniere’s specialist in
Yes! In fact the Neurotologist I referenced in this post was in Miami! I haven’t seen him in 7 or 8 years, but his name is Dr. Fred Telischi and he practices at the university of Miami: https://doctors.umiamihealth.org/provider/Fred+F+Telischi/526123
Hi Gayle did you find one? I live in Hallandale beach and my symptoms came back after 2 and a half years!
Website has a lot of information, including a healthcare provider directory to search for a
vestibular specialist near you.
Not sure if anyone is still following this thread…. But Does anyone know of a great neurotologist in the New York City area? I’m trying to find someone to help my husband with this disease. Thank you in advance for your reply!