Meniere’s Disease: Take a Dizzying Walk in My Shoes
Most people will never understand what it’s like to stare down the barrel of a complex medical diagnosis.
That’s not to say they will never get sick. They will. And it might be terrible. But most of the time, it will at least be easy to comprehend. The implications will be clear. The treatment options will be explained and the doctor will be knowledgeable. They will know what to do next.
But for the unlucky few who suffer from a rare disease, like I do, there are no certainties. There is little understanding. There is pain, confusion and despair. Hope is simply not a part of the equation. And that’s a big problem, because there is always hope.
Most people have never heard of Meniere’s disease. When I was diagnosed, I had never heard of it either. To this day, I’ve only ever met one other Meniere’s patient in person. But it’s out there, silently destroying lives in the shadow of the general public’s consciousness.
Over the years, I’ve tried to think of a good way to explain Meniere’s disease, but it’s hard to express. There is nuance that gets lost in translation. Even my fiancée Megan, who has been there for me every step of the way, gets teary eyed at some of my writing and asks, “Is this really how you felt?”
If our closest friends and family don’t understand, it’s hard to be understood by the rest of society. And that’s a major hurdle for raising awareness.
So I’m going to give a shot, and try to explain what it’s like to walk in my shoes.
If you suffer from Meniere’s disease, share this with your friends and family.
Imagine for a moment:
I want you to close your eyes and think back to a time in your life when everything was good.
Now imagine one day, you are walking along when all of a sudden, the world starts to violently spin around you. You fall to the ground and hold on for dear life.
Unbeknownst to you, you are experiencing vertigo. It’s like you’re drunk, but you haven’t had a sip of alcohol.
Your brain, suddenly in shock, thinks you might be poisoned, so to mitigate the perceived threat, a wave of nausea floods your system. You start to vomit over and over again. Your body wants to get the poison out. But it doesn’t help, because you’re not poisoned. The minutes turn to hours, and the world is still spinning. You’re terrified and confused, and you can’t walk.
In this moment of crisis it won’t occur to you, but there have been so many things you have taken for granted, processes quietly working away in the background of your brain to keep your world intact.
You believe equilibrium is a constant like gravity, but it’s not. Your balance comes with no guarantees. It’s controlled by your vestibular system, and that system can become compromised.
Hours later, when the room finally stabilizes, you are left with more questions than answers. “What’s wrong with me!?!” you ask God, or the universe, or maybe no one in particular.
So you go to your doctor. But your doctor doesn’t know what’s going on either. If you’re lucky, you’ll end up visiting an ENT who has some experience with balance disorders. If you’re unlucky, you may end up going years before you speak with anyone who has any idea of what’s going on, suffering with no explanation.
If you do get lucky, your “luck” might sound something like this: “We’re going to have to run some tests, but it looks like you have Meniere’s disease. There is no cure. They don’t know what causes it. Each attack of vertigo will damage your hearing slightly, and over time can destroy it completely. You have to stop drinking coffee and alcohol. You have to lower your stress. You have to eat a low sodium diet.”
You leave the doctor’s office scared and broken. You want to understand but nothing makes sense. Your problem just became very real, and very permanent.
When you get back home you go to Google and you start searching. You try to figure it out. But everything gets worse, because so much of what you find conflicts with everything else you find.
Quickly, a picture of the worst case scenario becomes fixed in your mind. And all the while you’re suffering. You are having vertigo attacks. There is a constant feeling of pressure in your ear. Your hearing is impaired and you panic about going deaf. Inexplicably, your senses turn against you. Bright lights and noisy environments overwhelm you in an instant.
Your job is in jeopardy, too. Your employers don’t understand. They think you’re overreacting.
That’s assuming you still have a job. The fear of having a vertigo attack makes it hard to drive, or even leave the house. And when you aren’t having vertigo, you are still cognitively impaired by brain fog and fatigue.
Nothing is certain anymore, and no one understands. You look fine, so no one thinks you’re sick, but you are, and in a big way. No one believes your pain and you don’t know what to do next.
The Power of a Story:
It’s a dark picture, I know, and it’s easy to see why so many people lose hope.
But it’s not all bad.
Many people are able to improve their symptoms with careful lifestyle management and medication. In more stubborn cases, a surgical approach can help as well. Many people, like me, learn to live in harmony with their disease, and go on to live productive lives.
However, it’s not an easy journey. And when the people around us don’t understand, it can make everything so much more difficult. Yet it’s possible to succeed, and that possibility is what gives us hope. I started this blog, and wrote a book, to show people that.
It took years for me to find ways to cope and manage my symptoms. I share my stories with the world, because if information is the missing piece, then no one should ever have to suffer for years.
If you, or someone you love, have Meniere’s disease, I encourage you to share your story, too.
The power of your story is enormous and can help the cause in so many ways. It will help and inspire others. It will raise awareness and educate those around you. It will help you process your life and bring you clarity.
Start a blog or a support group. Write a journal or a book. Share a post or a tweet. Or even just leave a comment on the bottom of this page. There is no wrong way to begin.
If you live to inspire, one day, someone will say, “Because of you, I never gave up.”
You can help make difference.
In a world where no one is aware, our voices will be heard together, and everyone will understand.
Want to learn more?
My new book – Mind Over Meniere’s: How I Conquered Meniere’s Disease and Learned to Thrive – is available now on Amazon as an eBook and paperback!
No matter where you are in your journey with Meniere’s disease this book will help you improve and 20% of the profits through September will be donated to the Vestibular Disorders Association in support of Balance Awareness Week!
Click here to order the eBook!
Click here to order the Paperback!
94 thoughts on “Meniere’s Disease: Take a Dizzying Walk in My Shoes”
Thanks for sharing your story. I love to read your blogs…very powerful. I have walked in your shoes for 11 years, and I hate that you got this terrible disease at such an early age. I was in my mid 50’s, and the thought of growing old with this disease is not a bright picture. I am glad you have an understanding fiancé to help you through. Do I need a Kindle to be able to get your book? I have an iPad…
Hi Carolyn, I appreciate the kind words! And no you do not need a Kindle to read the ebook, just the kindle app for iPad. You can preorder the kindle book now, or wait and get the paperback on Amazon when it comes out on Monday! If you were thinking about getting the eBook though, it would be great if you could preorder it 🙂 Hoping to have good rankings on Amazon when it launches so I can help even more people. Thanks!
I was diagnosed with Meniere’s Disease after sudden (near) deafness in one ear.
1st episode was in 2016, in my 30s, arriving with no rhyme or reason.
I eat clean, not a fan of junk foods/soda/ excess sugar or salt.
Steroid IT worked am’s my hearing was restored.
2nd episode Dec 2020, the Dr claimed it must have been too much sodium at Thanksgiving but ironically, we didn’t do that holiday based on the state of the world (“covid”). It was Dr code for “we don’t know” but i knew.
I knew I was too young, with healthy weight range and healthy for this to be isolated. Unfortunately without enough information, I had to navigate the unchartered google waters. Nothing seemed helpful.
Thankfully i wasn’t too dizzy or plagued with severe Vertigo, but my Mom to this day, does have recurring episodes of vertigo.
Most recent occurence: woke 2 weeks ago and couldn’t hear.
Instead of going through the circles of my primary care doctor now I knew to contact Audiology directly and let them know that I had a sudden change in condition. It’s considered a priority, NEVER wait when your hearing suddenly goes away.
Time is crucial in restoring what is possible with steroids/corticosteroids.
I was seen that day and after failing a hearing test, was sent to the ENT. Again, a significant part of my hearing in my right ear was lost. All 3 episodes of sudden onset hearing loss have been in my right ear.
Another steroid treatment directly into my ear drum and with such gratitude, the next morning I could hear again. Not 100 but better than the mere 15% i mustered the day before in the now familiar Audiologists hearing room.
I don’t take meds, not one to targe simple aspirin, so the prednisone was too strong.
My holistic approach to life didn’t just begin.
I walk 3-4 miles daily, not a cigarette smoker, drink socially.
Daily apple cider vinegar water (1spoon per 1 cup), ginger tea made with fresh raw ginger, not just a tea bag,
eating well and staying away from things I may not want to hear. The body and mind are connected, after all.
Good luck to anyone ecperiencing this. It’s not only confusing, but can be very debilitating to have such a random disease with unknown causes.
Have never met anyone with this.
Best of luck and health to all🙏
i have had vertigo. and it sucks. dog tracking down the hall to use the bathroom with your hand on the wall to keep from falling.can’t drive, can’t cook, can’t take the dog for a walk. i had to depend on others for everything i used to do myself. my daughters had to do the shopping and all the chores. i was given meds for it but it’s not like it helps in minutes and it needed to be in my system at all time. also like you said you still have that kind of not quite right feeling even with the meds. i am much better now. i can drive and do all the thing i do before, but i am careful about turning around and standing up. i keep my meds with me. but i still get it. i’ll get it while sitting on the couch watching tv. i try not to let it slow me down to much.i just don’t make any sudden moves.
I can remember the first time I had a severe attack of vertigo very well- it was the very last episode of the Sopranos, and my husband had cooked up a wonderful dinner for us. I’d taken only a few bites of food before feeling the faint awareness that something was very wrong. I was so dizzy I couldn’t believe it. Because I didn’t know what was going on, I immediately spit what food I had in my mouth onto my plate, turned and put my feet up thinking I was going to faint. My husband asked what was wrong and I said I was so dizzy I was scared. We’re both nurses, and my mind was instantly scanning for answers.. stroke? heart attack? something I just didn’t know about? I had to go to the bathroom, and my daughter helped me in there but I couldn’t believe the whirling room, the feeling I was falling, falling, and no grabbing anything stopped it. I fell off the toilet and onto the floor and had to change my clothes in there on the floor. I said, “I need to go to the ER.. NOW.” My husband got me out to the car and sped me to the ER. They were just checking me into triage and telling me I was going to have to wait in the lobby for a bed when the vomiting started. I sprayed the room as I tried to find something to vomit into, but got the nurse as well. Instant admission. An IV, Phenergan, and waiting for the vomiting to subside long enough to get some meclizine into me was the treatment. Someone came in and told me I’d had a vertigo attack, that I would follow up with an ENT doc, and go from there- and that the vertigo might go away, might not. They did a CT scan of my head to make sure I didn’t have a brain tumor though.
My appointment with the ENT was only a few days later and by then the dizziness had mostly subsided but I was totally spent. No energy and I was terrified of another episode. I felt dizzy for a few days after that attack but didn’t feel right for about 10 days. They did check for an auditory neuroma as well, did audiology tests. No neuroma, and I had some hearing loss on the left side, mostly in the low tones. I recall having some ringing in my ear on the left side but kept passing it off as congestion and had taken a decongestant for it. It did relieve the feeling of fullness and the feeling that my ear needed to ‘pop’ to equalize the pressure, but it kept coming back in varying degrees. The doctor said I should change my diet- ease off the salt, no alcohol- I didn’t drink anyway- and limit my caffeine significantly. I was a 3-4 cup a day person and went to 1-2. I saw the doctor again in 6 months and nothing had changed. He said he was reluctant to just say I had Meniere’s Disease at that time because it could have been acute labyrinthitis.
For the next several years, I had a bottle of meclizine with me at all times and if I felt the fullness and ringing, I took the meclizine until it stopped. The episodes were mild and I didn’t have any dizziness past some very very mild wooziness perhaps once every year.
This past summer, I started noticing a fullness and ringing in my left ear and realized after a few weeks that it just wasn’t going away. I pulled out my very old bottle of mecilizine and began trying it out. It didn’t seem to help relieve anything. I did go into the mountains around Labor Day and felt my ears pop- it was awesome. I felt normal the entire time I was there. About a week later, I was back to that feeling of super fullness and lots more ringing. I didn’t feel dizzy at all but sounds really irritated me. If I was in a room with the tv on, people started talking and the fan on the wood stove was going, I thought I’d scream. It was just weird- the sounds were muffled on the left side but I couldn’t hear clearly. I could turn up the volume on the tv to hear it but couldn’t stand other noise. I finally went to see the ENT again in early December. I just couldn’t take the fullness and ringing anymore, kept trying to press my palm, to my year and pull it away to make my ear pop, yawn, swallow- anything, but no relief. He gave me a nasal spray hoping I just had a blocked Eustachian tube but it didn’t work. I went back for audiology and now had not only low tone hearing issues but high ones as well. An MRI was ordered to check for a neuroma and it was negative. He sent me to my primary care physician and she was perplexed as to why I was there. She said she was only going to send me back to the ENT but gave me a new prescription for meclizine and another for hydrocholorothiazide. As of my last visit with the ENT I still hadn’t had any vertigo. That all changed shortly after Christmas.
I was on the computer typing and became aware of that dizzy feeling and immediately went to go lay down. This happened in the morning and I was so scared I just sat on the sofa not able to watch the tv because it made me worse, yet if I closed my eyes, it was even worse than that. I was exhausted by the end of the day, kept taking the meclizine without relief, yet somehow didn’t get nauseated. Thankfully, I had a very understanding husband who stayed close and watched out for me. The fullness and ringing stayed constant and my hearing was quite muffled on the left side. I finally fell asleep on the sofa sitting up, and when I woke in the morning, the dizziness was just gone. There was left over wooziness, fatigue and fear of it happening again. I called the ENT but he didn’t want to see me again until our next appointment.. I had a milder version of this about a week later and was very concerned but knew I had an appointment coming up.
Two nights ago, I had a much more severe attack and became quite nausous and vomited violently.. I broke out in a drenching sweat and had to call my husband on his phone- he’d gone to bed- to come sit with me. I’d tried to get up to use the bathroom and was clutching walls and doing all I could to just get back to the sofa. My husband got a cool cloth for my head, sponged me down, and tried to give me the meclizine. He said to let it dissolve in my mouth. I tried but it came up with the next round up vomiting. I was so scared I can’t even begin to say how terrified I was. I wasn’t sure what was going on with me and just wanted it to all stop. My husband had been given Zofran for his own nausea for another reason and got one for me. I was so desperate for relief.. I let it dissolve under my tongue and just layed on my side with my eyes closed for an hour or so before falling asleep. When I awoke, again, woozy and exhausted but much improved. I’m still not recovered fully. I’m exhausted, have been sleeping most of the day and feel in a daze. And of course I’m absolutely terrified it will happen again. I have no idea what brought them on. I wasn’t doing anything odd, nothing I can pinpoint. Just watching tv, or on the computer, and once just woke up with it. Only sleep seems to break the spell, yet I’m so afraid of the next one.
I know this was a very long post, and I do apologize. I’m not even sure this is monitored anymore, but I’m going back to the doctor tomorrow. I also noticed the strangest feeling- like I had effervescent bubbles in the middle of my head, just a few at a time… the oddest feeling because I can only hear them from the inside.Still now idea what triggers these, how long this will last, but seem to be stuck with the fullness and ringing, and muffled sounds on the left side. At least there are no migraines. If this is Meniere’s, I don’t like it. My family doesn’t quite understand at this point, and no one really ‘gets’ how scary it is to me. I think I will get this book and read it, and hopefully the doctor can shed new light on this for me. I appreciated every story here because at least I know I’m not alone. Thank you all.
I am only 32 years old. I am on my third round of an attack. It started 2 years ago. I love to drink to have a good time as i am so young still. Its getting progressively worse for me and i am beside myself. Here i am so young losing the hearing in my left ear. The doctors i have seen arent as aware as some out there so theyre not as helpful as i need. I am waking up everyday hoping for answers that i will most likely wait years to get.
Nancy Nazario, PhD
Thanks for your story. I have reposted it on FB. I was diagnosed at 60 and was an avid traveler. Now I have to plan out visits to the grocery store and conserve my energy for a luncheon with good friends.
I hold a PHD in psychology but nothing in my training or practice prepared me for being slammed with this nightmare. Always an over achiever, I gradually learned to accept MD and make peace with my new limitations. I now take time to enjoy more and fret less, and finally get to test those relaxation techniques I taught to my clients. Your writing is excellent and very helpful. I will order your book as soon as I decide which reader to get to replace my defunct one. Good luck. Thank you. Keep writing and shining your light.
Hi Nancy, your welcome! I’m glad you liked this piece. I’ve wanted to write something like this for a long time, I just never quite knew how to say what I wanted to say. Thank you for the kind words!
I had someone responding to my comment on one of the mercola.com articles. He is in the U.k. and had lived and worked in Germany. He said healthcare in Germany is second to none. He was diagnosed with Meniere’s Disease and had a surgery 7 years ago and symptoms never returned.
I have POTS and everything you said applies to people with this diagnosis. Thank you.
Interesting read and it stirred up feelings I had kind of forgotten. I had my first attack almost 4 years ago at the age of 35 while driving up the M1 going past Junction 38 one busy Monday. I had pulled over a few miles earlier thinking I had food poisoning or something, I wasn’t far from the office so kept driving. It was only sheer luck that stopped me causing a big pile up on the motorway (I was in the middle lane at the junction doing about 45mph) and I now find driving on them very stressful and something to be avoided.
I now work from home and I am very lucky to have a job that allows that. My workplace has been brilliant though I don’t think they fully understand, Can anyone who hasn’t actually experienced it understand though ?
I feel my case might be slightly unusual in that my hearing loss happened about a year before the first real attack.
I found this article, and your blog as a whole, really inspiring! I myself was diagnosed with MD about 6 years ago when I was 26 years old. It was a really tough one, especially when so much in life was still transitioning. It is so difficult to make people understand how it feels to suffer with MD; hopefully by sharing this article some of my loved ones and work colleagues they can begin to understand.
I was diagnosed with Menieres in April 2014. I was “lucky” I guess that I got a diagnoses quickly. I was told I had BPV and since I had a friend with that, I immediately went to a Physical Therapist, who then sent me to a hearing test. Saw an ENT, had an MRI etc. I then had another hearing test and because of this, the ENT said it was Meniere’s. It was the typical no salt, no coffee/caffeine/alcohol routine. She did put me on a lorazepam daily. DONT do that! It turned me into a literal zombie all day. I work full time and so the first couple months were pure hell. I soon quit the lorazepam and that helped. I read everything I could get my hands on. I came across a book by Randy Cram called “Overcoming Menieres.” Bottom line, I started taking a few of the herbal supplements he had heard about and took. Within 2 weeks of taking these I could not believe how much better I felt. So here I am One and a half years after my first and only vertigo attack. I take my herbs faithfully. I do watch my diet, but I still drink a little coffee and have an occasional drink. I found that those didn’t affect me. I have days I don’t even think about the Menieres and I have days I am a little dizzy, but all in all, I feel pretty good. I’ve noticed that I still live in fear though of a verticle attack. It is a horrible disease and no one can understand what it is like. Fresh air, exercise and rest also seem to help me feel better. Good luck to everyone out there!
hi ive just been told ive got menieres i have good days and very bad days. ive got a new grandson who is 6 weeks old and it hurts me that i cant look after him because of this i can only hold hi if some one is sat next to me.im not safe to go out on my own because i never know when im going to get a dizzy spell.its so nice to beable to talk to others who have it
Hi Shiela, I know how scary it is, but as I mentioned in the article, there is also so much hope. The first step is always to make sure you have a good doctor. If you go on http://www.healthgrades.com and search for neurotologists in your area that are highly rated, you will have the best chance of success. Neurotologists are ENTs that specialize in treating balance and hearing disorders. And you definitely are not alone!
Thanks for sharing your life. I am fairly new to this, and I’m gathering as much information as I can. I will be ordering your book. So far my symptoms are tinnitus, fullness, some hearing loss and occasional lightheadedness and feeling a bit unsteady. Even without the vertigo my ENT is calling it Menieres. The more I discover about this disease the more thankful I am that I am not yet experiencing vertigo. At this point my goal is to do whatever I can to control my symptoms and avoid getting worse. You were really given a raw deal at such a young age. Please know that the information you provide is a blessing to me and many others. I look forward to your book and wish you success.
Thanks Deb I really appreciate you saying that. It was a raw deal, thats for sure, but I have found ways to cope and manage it too. There is so much hope. Thats the message I always try to send. I’m happy to hear you aren’t having vertigo. I still get all the other symptoms you described but I havent had a vertigo attack in quite some time. It takes so much work though. Thank you for the kind words!
I Don’t get the whirling vertigo much anymore, but there is always that fear in the back of my mind…I have been in some public places when I would get an attack of vertigo…so humiliating…I do believe that a positive attitude is extremely helpful, and I try to stay active and busy every day…this disease will be with me for the rest of my years, but I am not going to let it rule me!!!
You explained it beautifully. I’m going to share your words with my family and friends to help them get a clearer idea of this disease than I’ve been able to provide. Thank you for helping the rest of us.
Your welcome! And thank you for the kind words.
I really enjoyed your read. I am a speech therapist and have worked with a person with MD. She is one of the most positive people I’ve met. Her hearing is completely gone, but she able to read lips amazingly, until she’s “on my personal roller coaster!” Over input can set her symptoms in a tizzy. Recognizing the signs before the symptoms hit has been her lifesaver. She has stated more than once it doesn’t do any good to worry because it’s a waste of energy. I’m going to pass your blog on to her for support and maybe, like you, help others out.
Hi Toni, thanks for sharing this! Recognizing the warning signs is definitely extremely helpful! I write about that extensively in my new book. I appreciate you passing the blog along to your client!
Great article! I’m definitely going to purchase your ebook. I have had Menieres since 1996 – day before Thanksgiving. I’ll never forget that first vertigo attack. I thought I was dying! I was in bed for almost a week. My poor husband had no clue how sick I was, and he kept trying to feed me Thanksgiving leftovers – ugh! I went 10 years without another episode, then I had another horrible attack. It happened about a week after my dad had a stroke. Stress is my biggest trigger. I have had attacks off and on for about 5 years, but it’s been at least 4 years now since my last really bad one. I still have occasional mini-spells, brain fog, sensitivity to crowds, loud noises like screaming children, elevators, etc., etc. One thing I find very odd is although I do get tinnitus, fullness in my left ear and other weird noises in my ear – I still have PERFECT HEARING! I don’t understand why everyone else seem to lose their hearing and I haven’t. The vertigo is my worse symptom. What’s up with that? Thanks again for the great article!
Hi Linda, thanks for sharing this. I wanted to let you know that I haven’t lost my hearing either. When my symptoms are active, and the feeling of fullness is there, my hearing fluctuates, but no permanent hearing loss for me…yet. My Neurotologist told me that if you are able to get your symptoms to a manageable point and stop having the vertigo attacks, there is no reason to think you will ever lose your hearing. But either way, I’m glad to hear you haven’t lost it! Thank you for the kind words.
I was only diagnosed with Meniere’s this past month but I have had symptoms the past 4 years or longer. I have the four classic symptoms plus migraines, exhaustion and brain fog on my worst days. I found your explanation very clear and I am hoping others will understand better what I am going through from it. Thank you for sharing.
I thought I had meniere – no doc could help. Started post kids. Docs didn’t help one bit. For some reason I gave a go to a gluten free diet. Vertigo stopped pretty much instantly. I am so sorry you are all experiencing all those horrible symptoms and hope you find a cure.
Hey Fab, thanks for sharing this! I’m curious did the gluten free diet help with the brain fog as well? I’m planning to experiment a bit to see if it helps.
Excellent capture of Meneire’s, and it makes me feel fairly lucky when it comes to mine. Mine tends to be either on or off, and the largest issue is how it causes my migraine with aura to misbehave.
One of the things I find the most baffling and confusing about Meniere’s is how wildly different people respond to treatment and have different symptoms. My Otoneurologist is equally frustrated by this because it is likely Meniere’s is caused by multiple things, and really in the end multiple disorders requiring different types of treatment.
It’s amazing how well you tell your story, it will help bring awareness of this disease much farther.
Thanks Syn! I agree that it is most likely a basket diagnosis. I’ve written a bit about a researcher in Spain, named Dr. Escamez-Lopez, that has already discovered several different causes, and believes that ultimately each will required a different treatment. But his work is fascinating.
Thank you so very much for sharing this and I am going to get ur book. 6 months ago I woke up feeling like I was on a ship in horrible storm, , in two days I completely lost my earing in my left ear. They are saying it is Menieres or a auto immune disease. It has compelety changed my whole world. The roaring in my ear, knowing I will never get my hearing back. I just now got to were I can drive some times. I have always been very active now I have to plan out my day, knowing If I dont take a nap and keeping going its gonna be a bad day. My ent has said my case is complicated. He has clinically diagnosed me with Menieres which means I have some symptoms of the disease but some of them aren’t. he said it is very rare for someone to completely lose their hearing as I did. Have you ever run across anyone else that this has happened too?
Hi Delana, I have not heard of anyone losing their hearing completely that fast, but I know of MANY people who have lost their hearing from Meniere’s disease. It’s possible it could be autoimmune related. The symptoms are often the same. It might be helpful to find a good neurotologist near you, rather than just a regular ENT. Neurotologists are ENTs who have gone back to school and subspecialized in balance and hearing disorders. They will have FAR more experience dealing with vestibular disorders and might be able to help you get a concrete diagnosis. You can find highly rated neurotologists on healthgrades.com
I have MD and understood this to the dot! I had a laby 2 years ago and praise God, have had no mor of the violent vertigo attacks I was having everyday for a very long time. Of course I did gentamicin injection treatment since my hearing was already really bad on the affected ear….but that did not work so laby was my last resort. I still suffer from dizziness but that is only mildwhen I move my head too fast. My eyes still take time adjusting and lights still bother me. I am still fatigued more than normal at times and my friend brain fog is never too far away. I have horrible balance (bye bye high heels and wedge shoes), but thankful I can still ride a bike. I love riding a bike since running makes me feel like a bobble head (everything moves up and down). I am very active because, it helps my balance, relive stress, and helps me stay healthy. I hate MD but this illness has made me discover how much I can still fight back after being knocked down lots of times. I am 100% deaf on one ear, but don’t mind since I have more of a normal life again. My family and friends are the best! I wouldn’t be here without their love and support! I believe everything can be a positive no matter how negative it might seem….I am a warrior fighting an everyday battle, silently but with reassurance (faith) that I am strong; I can and I will!
Thank you for sharing this Diane! I love your attitude, it’s very much the same way I think about it.
My 80 year old mom has suffered with vertigo for many years now. For years, her hearing has been very sensitive and she constantly has sharp pains in the side of her head. She was misdiagnosed in 2013 with laryngitis when in fact it was severe double pneumonia. She was put in ICU on a Sunday afternoon and by 1 am, she coded. She was on life support for about 2 weeks. Her memory has been very sketchy since that time, both short- and long-term. She was diagnosed last year with early Alzheimer’s dementia, yet every memory test she takes, she scores higher than the previous one. Because of that, I’ve wondered if her condition might actually be as a result of medications she’s been prescribed since her near death ordeal. She still has bouts of vertigo and is falling quite a lot lately. We’ve blamed it on her trying to move like she’s still 20 years old, however her heart doctor is concerned about an arrhythmia causing her to pass out and fall. She is more often than not in a brain fog. I’d never heard of Meniere’s Disease until today. Are any of the symptoms of MD similar to AD/dementia? I asked her “head” doctor this week if we could just take her of all meds and start fresh to see if that could potentially make a difference with her memory. I’m now wondering if we should consult an ENT specializing in MD to see if that could be what’s actually ailing her.
Hi Patty, some of the cognitive symptoms, like brain fog and mental fatigue can be similar to AD/dementia, but to a much lesser degree I think. If she is having vertigo and balance problems, it’s definitely worth it to take her to a specialist. The type of specialist you want is called a Neurotologist. They are ENT doctors who have sub-specialized in hearing and balance disorders. You can find a highly rated neurotologist near you on http://www.healthgrades.com
Thank you so much! We’ll definitely get on that asap.
You’re welcome! I hope they are able to help your mom. Finding a great neurotologist was a big turning point for me. It made all the difference.
There is still hope! Find a Nueromuscular Dentist near you! http://www.extraordinarysmiles.com/tmj/dentistry-raleigh-nc-vertigo/
Hi Tracey, I am able to manage my symptoms pretty well with many different lifestyle management strategies. And though some people may be misdiagnosed, and really have TMD/TMJ, I think the vast majority aren’t. Though it definitely is good to rule out, if someone isn’t responding well to conventional treatment and lifestyle changes.
I was diagnosed with Meneirs a few years ago. I realize now that I had it for years before the really awful attacks started happening. My balance is always off & my ears ring all the time. Also have ear pain. I fall quite a bit. I’ve had to leave a store, because I had a panic attack because I thought I was going to fall. Now I take medication to prevent the panic attacks. I’m terrified of stairs & escalators. I have to close my eyes to get out of bed or I’m instantly dizzy. I take motion sickness pills three times a day, everyday. When I’ve had a really bad attack, I feel like I’m walking on a floating dock for months afterward. This disease effects my life 24/7. I’ve had to make changes in my diet & it does help.
I hate the never ending ringing, high pitch noise! I move slowly and people notice. I am very careful when I transition from sitting to standing. I will certainly never twist quickly again. I have changed my exercise from running to power walking. Been dealing with this since Feb 2015. I have more good days than bad days. Great writing.
Thanks Mindy! If the tinnitus is getting to you, give this a try: A New Approach For Treating Tinnitus. It has helped me cope with my tinnitus more than anything else!
I’M NOT going to go into detail about my MENEIRS but just want to share how I try to explain to people what it’s like to have an attack.
Being that I live on the coast I ASK them if they have ever been sea sick. Most will answer YES and say they thought they were “going to die”.
I then tell them to times that by 10 and they just might get an inkling of what it’s like for us.
You’ve captured it perfectly! I was diagnosed just 5 years ago at the age of 22. All I could describe it as was sea sickness, laying on a bathroom floor felling like I was going to fall off the face of the earth! I was told for months it was just a ear infection and it wasn’t until I was taken into A&E in the middle of the night by ambulance vomiting my stomach lining that Menieres was first mentioned. I was told it was highly unlikely to be Menieres as it usually effects older men not young fit and healthy girls. After test after test and attack after attack I was finally diagnosed and prescribed medication. I’ve not had an attack for a couple of years now but it’s always in my mind when I get stressed or start to get hot or unsteady to take some time out in a cold dark room, take deep breaths and try to relax.
Nancy. Thank you for writing this story. I have shared it on my FB PAGE so my friends and family have a better idea,of what we go through everyday. I was diagnosed with Menieres in 2006 but tge vertigo attacks did not start till 2009. Had 5 the first and second years managed them on medication. Diazapam, acyclovir and a water pill. Did pretty good until 2011. Had to go out on short term disability twice last time was for three months. Zoloft was now added to help conto the panic and anxiety I got due to the fact of not being able to control the attacks anymore or the length of them. Got past that went back to work 2013 all was going well until early 2014 when constant dizziness, brain fog, tingling just kept getting worse. Also major anxiety and depression. Also diagnosed with MAVs. In May 3014 had one shot of gentamicin. This has taken away my vertigo, the pressure and some of the tinitus but the offbalancess that I deal with daily us migraines silent and painful also have become more prevalent since the shot. And light sensitivity for fluorescent and sunlight has either given me migraines or made me feel like I am going to pass,out. I have tried numerous preventative headache medication and anxiety and depression medication with not good results. I have seen numerous neurologist who are all pushing botox. My primary MD saud if I could get my anxiety under control the rest of my symptoms would dimish. I was finally accepted into a headache clinic that is also for pain management. They teach biofeedback, relaxation exercises, physical theraphy with self taught trigger point massages, self talk theraphy and alot of positive reinforcement to help you build the confidence in yourself again. I have been homebound for a year, stopped driving, stopped shopping and depended on my fiance way too much. I am learning how to take my power back and I am happy to say I have finally found an anxiety medicine that my system is accepting. But I started on a very low dose. Instead of having a headache everyday I have only had about two headaches a week. It also has helped with my passing out feeling and my constant dizziness. Change in barometric pressure is a big aggregation of mine and usually ends me up in bed. But on the upward swing now and hope to keep learning more from this clinic so I can successfully manage this disease that we all have been unfortunate to receive. Can’t wait for your book to come out as I am really interested in buying it. So I can also give it to my family so they understand what I live with everday. That has been the most challenging and most stressful part of this disease for me yet. Like everyone said we look ok but no one knows how our head feels each and ever day. I wish the best for all of you Keep on fighting I will never give up. I have too much to accomplish in my life. I am 62 now retired due to this and looking for the new me!
Hi Nancy, thank you for sharing this! I know exactly how you feel and I really love your attitude. So many people lose hope, it’s great to see how hopeful you are after having gone through so much. I hope my book will help your family better understand and better support you. It has really helped me with my family. I know my family never realized just how bad it gets, and how much I have to do on an ongoing basis to manage the symptoms! Write back and let me know how it works out!
I sure will thanks again and sorry for me my typos gosh there were alot. Is there anyway I can go in and fix them feel sort of foolish for not proofing it better. THANK You.
Terri L. Hatch
Yes, that’s pretty close to how it feels a lot of the time. It’s definitely a roller coaster ride I would dearly like to climb off of. Yet it’s also strangely comforting to know I’m not the only human suffering with this… Thank you for the encouragement!! It helps 🙂
You’re welcome Terri! And you most certainly are not alone!
Hi Abi, first off thank you for the kind words. I’m glad you like the blog! I can totally relate to what your saying. I was 24 when I was diagnosed. It’s definitely hard getting it in your mind twenties.
Stacy M. McCorkle
Your story brought tears to my eyes because it mirrored much of my own pain and confusion. I have suffered for over 20 years and inherited it from my father who is deaf in both ears. The difference in my story and my dad’s is that his started when he was in his 60s and mine hit at age 32. I believe mine came on earlier due to several hit blows when taking Taekwondo with my two sons. It happened suddenly one Saturday morning when I woke to severe pressure in my left ear and voices sounded robotic. Vertigo did not come on until a few days latter. My life went from a hundred to zero in just a few seconds. After my family doctor tried treating me for an infection with no positive results, I was referred to Shea’s Clinic in Memphis, TN where my dad had been treated with steroids which did help. Steroids had terrible mental side effects on me and in two weeks time the pressure in my ear increased substantially. My husband laughingly said that if we have a flat, I could easily exchange my ear pressure to blow the tire back up. A endophymatic shunt was done which did relieve the pressure in my ear. It is hard some days to think or remember. After years of ongoing struggles my family became angry, comparing my MD to Dad’s I was often called lazy and told to push through it. The hardest was not being able to be there for my teenage sons. The days of an immaculate house, cooked meals every night, being very active and outgoing, a great communicator, etc. were history. I was forced to become a different person; a person I didn’t like or understand. God has a plan, but many days I wondered if He had burned mine. Today I am divorced and living alone. My sons have little to do with me and think I let them down because I don’t want to try. My now ex-husband started out the sweetest, most caring man alive, but after years of dealing with the stress of large medical expenses which could never result in a cure he gave up on me. This wasn’t the only issue for our divorce, but it certainly didn’t help to make our marriage stronger. I don’t go out or do much; however when I do my family is quick to remind me when I try to explain MD that it must not bother me too bad because I went out and did something a few days ago. My good days are only celebrated by myself because I am the only one who truly knows of precious those days are. When trying to think clearly and write a blog, my vertigo and brain fog creep in and have to stop. This problem has become much worse in the last 7 years. We have to keep screaming for better medical research and treatment. It might be too late to help me, but not for my children and grandchildren who stand a chance of inheriting this terrible disease….. THAT IS MY HOPE. The most valuable thing MD has taught me is to not judge others so quickly and harshly. We don’t always know there internal struggles. A negative attitude and unkindness toward someone who appears to struggle with living is like adding a 50 pound weight on their back when they are already carrying 200. I just want someone to “get me”, accepting me as I am while being understanding and supportive. I don’t want to always be needed but I do want to always be wanted. With Meniere’s I feel like a burden to those who care about me. Many of my family have been blocked out of my life due to their ridicule, false judging and painful accusations of being an attention seeker. If my story is beginning to read like a wandering nomad and confusing, I apologize. The stress of wanting to communicate well along with the emotional pain of remembering what Meniere’s has cost me increases the vertigo and brain fog. Humor is my favorite coping skill, but my humor can be a little warped and not always understood by those who are around me. OK, I didn’t mean to write so much and need to stop before the pity party begins. Can have one today, because today is pajama day and I refuse to dress up for ANY party! =) Signed- A Sober Drunk
I had my first dizziness or Vertigo during July, I was getting ready to go to the dentist…but, all of a sudden, the room was spinning, I felt nauseas, I was holding on to my bed for dear life. I started yelling for my husband, I was lost for words, I went into a panic attack.
I cried, and felt pain in my chest, I said I was dying…and my husband called 911. I was admitted for 24 hours, they said I was probably weak and since I had work done and had a dry socked…I wasn’t eating much. I was discharged with a rx. of antivert for the dizziness. Okay, so now I am going to therapy for my what they call..Bppv. once a week, feel somewhat better…but still can’t sleep on my right side or upwards…I do get a lot of headaches, earaches…and to top it off I suffer from sinus..and now back to the oral surgeon for more extractions, I am scared, but I have no choice but to deal with it…and just be careful with any movements…and the anxiety, depression has made it worst. Looking forward in reading your book!
Hi Maria, vertigo and a panic attack at the same time sounds so terrible. I cant imagine having to go through both at once. I would always get scared with the vertigo, but never full on panic. I used have to panic attacks when I was younger and they are no joke. A panic attack alone is hard enough to deal with, but panic and vertigo together? Thats my worst nightmare. I hope you enjoy my book!
Great post, Glenn.
I’ve had Meniere’s for around 15 years now, and thankfully, my spins and drop attacks are gone (for now) – but at the outset, it was as you described. Terrifying, debilitating, and discouraging. I’m glad I had a good ENT who understood what it was — but then he retired, and the doctor who replaced him tried to call it labyrinthitis, then justify that by saying “It doesn’t matter what we call it, it’s all the same.”
It’s hard enough with the vertigo and nausea, but the brain fog, tinnitus and hearing loss is almost worse. I still have the fog and little ‘woozies’ on a regular, if not daily, basis. My hearing has always been impaired, but now it’s bad enough that I wear hearing aids. And the tinnitus is constant.
I will share your post to help educate my friends and family. Sounds like I should read your book, as well. Thanks for your efforts to spread the word and encourage support for this horrible illness. Good luck to you on your path! Becky
Hi Stuck, Thanks for sharing this! I also havent had any vertigo or attacks for some time now as well, but like you I still get bad brain fog and fatigue and all the other symptoms. If you get my book, I hope you enjoy it! I’ve been getting great feedback from everyone so far! 🙂
Margaret (Peggy) Landzaat
I have had severe bi-lateral Meniere’s for 64 years .. I have had surgery to my right ear to deafen me to try to stop the terrible , non- stop dizziness & throwing up .. I have lost most of my hearing & rely on very strong hearing aids & lip reading to cope .. I am now 73 and life is still good , although my balance is not .. Through all those years I have raised 5 sons ,& worked for 30 years in retail management .. It took my Doctor’s 7 years to diagnose me in the 1960’s ..I wish I had had someone to understand what I was going through ..I never did .. I am so happy to read here that you wrote a book . This will help so that people will not have to go through this journey alone as I have .. It has been an interesting trip ?to say the least …
Hi all you MD’s out there. Tough but what can you do? Deal with it I suppose… Doc told me I got MD in the ER.
I was busy with a delivery, felt a bit disorientated then sat down. It just felt like I was in a nightmare, next moment my brother and sister in law was helping me in the car and rushed me to the ER. I was just thinking, wtf! My question is, how do I know if it is actually MD?
Best of luck to everyone and just hang in there!
Hey Lodewyk, your best bet for getting an accurate diagnosis is to find a good Neurotologist (an ENT subspecialized in hearing and balance disorders) near you. Many doctors and ENTs wont have much experience treating Meniere’s disease, but a good Neurotologist will. You can search for a highly rated Neurotologist nearby on http://www.healthgrades.com – Good luck to you too!
Less than one year ago, I was having a bad dizzy night. I am a 25 year survivor of this horrid nightmare! I thought about the past 25 years and the thought of my first vertigo attack!
After countless doctors and countless years of dealing daily with this chronic disability I had a moment of pity for myself, again!
I was one of the vertigo sufferer’s chasing down doctors and begging for help. If I was not begging, I was praying!
Working was nothing more than a nightmare, when I could work!
After a few moments of having another pity party for myself, I thought about all the people who are still chasing down a doctor for help. I thought about all the people who we’re also having a pity party for their self.
I have never been given a hall pass for having this invisible disease. I have a husband and two daughters that still do not understand me. I continue to this day of dealing with grief from my family. Yet, here is what they do not know.
I raised my 20 year old and my 18 year old without a single complaint. I pushed myself and fought my disorder to raise them without having a disabled mother. Not a day went by that I did not have dinner on the table, help with their homework and take them to practice. My daughters traveled year round for ball. I pushed on. Having to drive through tunnels and over long bridges was a task that most of us wouldn’t have gave a second thought, but, I continued on.
Today, I am amazed that my family still does not understand, me! I am not allowed to have a pity party for myself and to be honest, I should be given a hall pass! Just last week, my 18 year old daughter told me that ‘I am not disabled’! This was after three years of me begging my husband to install a shower bar. Having moved to a new home my bath tub is tall and climbing in and out has been a task.
It rocked my soul when my daughter said this to me. I have tried many times to explain to my family how well I do with my disorder. I have tried to explain my symptoms, but they do not care to listen. I have video tapes and youtube videos that I have begged them to watch. They care not too, but they have a strong opinion of my disorder, sadly.
I know deep down inside my family, they do not want a disabled mother or wife. I get this. What I do not get is the fact that I have owned my faith, worked against my own mind and fought daily for them. Why can’t I have a pity party from time to time or a hall pass?
I will finish by saying that less then a year ago, while laying in bed and having a tiny pity party for myself, I wondered how many people I could help that lived in pity.
I typed in the facebook ‘Start a group’ and I started a group called, ” Dizzy Vertigo Life “,( A support group for this horrible disorder).
I did not know if one person would find this group however I knew if only one person did that I would share my journey and finding help for them with Vestibular exercises and certain tools I taught myself to cope with this dysfunction from hell.
Now, I deal with constant grief from my family for helping so many people who suffer from our disorder. I refuse to allow my hall pass to be taken away from me now. I have raised my family and gave them 100% of me. They have their own life and a wonderful one at that.
I am keeping my hall pass and giving back to the dizzy friends I have met online. I had no clue the night I decided to create a group on facebook that every single day, I meet a new dizzy friend.
I created vestibular videos and exercises to help so many people chasing doctors for help.
With the help of 7 Admins. who all suffer, we have made our Dizzy group a hall pass for support along with a wealth of education and medical information.
Reading you’re testimony made me realize that I can be me! Nobody will ever understand how we walk in our shoes. I just wish that people would walk in their own shoes. I can only hope they never have to walk a day in my shoes! They would need a ‘Hall Pass’!
Hi Tammy, thank you so much for sharing your story! You are incredibly courageous and positive despite so much hardship. I experienced a similar sort of thing with this blog. When I first started I had no expectations. I didn’t know if anyone would read what I wrote, or like it, or even find it. But every day it’s grown and it is really a beautiful thing. It sounds like you really make a difference for a lot of people and I definitely will be joining your group! I am also interested in seeing your videos! If you ever have anything that you would like to share, I would be happy to help! Thank you Tammy!
Thank you kindly for you’re reply.
It touched my heart to read you’re response as I can only assume how much time you put in to helping so many people who suffer.’
I also had no idea how much time the support group would need. Let me tell you, they need all the support anyone can offer.
Some of the sufferer’s have made strides and their quality of life has improved from the ‘Dizzy Vertigo Life’ ( A support group.
Some member’s of our dizzy family have not found their relief. I am at a loss for helping them. From Vestibular exercises to medications, nothing seems to work for them. I am not a doctor and all I can do is support them emotionally for their grief, sorrow and pain!
It reads as if you have a knowledge of this disorder that out weighs what I have to can give back. I will be following you’re blog and I have already read that you’re words will continue to have me push daily and conquer my Dizzy Vertigo Life!
I will be reading you’re books as well. Being able to relate and gathering knowledge from you’re testimony will speak volumes to the group members that I try and help daily.
Again, thank you for you’re kind words and thank you for giving you’re time back to all those who suffer. This is a priceless gift!
I look forward to following you’re journey. I know the Dizzy Vertigo Life’ members will also find valid support from you.
Thank you and I look forward to being you’re dizzy friend.
I suffered from a severe Syncope episode in 2008, it seems like everything went down hill from there. It was a high stress time in my life at only 28, and to be honest I’m not even sure that I’ve recovered. The syncope progressed into bouts of random dizziness and disorientation. I have had at least 2 severe episodes of vertigo since, the latest one being this last December. I am just now seeing a neurologist to get my testing done, but during my initial appointment with my ENT in June, he said he suspected Meniaires. Just like you say in your blog, every single website has something slightly different to say. I am thankful that my team of Dr’s was sharp enough to look down this path so quickly. What now? My Syncope requires I eat a high salt diet but my Meniaires says I shouldn’t. I suppose I have plenty of adjustments to make and more so by trial and error. Thank you for speaking out and teaching us about things we can do to get back in control.
Hi Cathy, I’m sorry to hear you might have Meniere’s but I’m glad you were able to get the diagnosis so quickly. My number one recommendation would be to see a Neurotologist. They are ENT Doctors who have subspecialized in hearing and balance disorders. You can find a one thats highly rated near you with http://www.healthgrades.com and they will be able to give you a more definitive diagnosis and will know how to treat you even with your Syncope.
Teresa Sue Van Valkenburg
I was diagnosed with Menieres about 13 years ago, I am 62 now. It was horrible, we were in Italy and I had three teenage daughters, and had to depend on a friend to drive us to all their events. In Europe teens can’t drive until they are 18 so it was really bad. Luckily I didn’t have the throwing up part (probably because I have phenergan for nausea because of migraines and I would take that) but the dizziness and the nausea. It would hit suddenly and I would be so disoriented and fall down, just drop like a rock. My husband was a general in the Air Force and we were required to attent formal functions so it could be quite embarrassing. The Italian doctors looked at me first, but didn’t have any answers, so the military sent me to Raiemstein in Germany to be tested. They gave the diagnosis but the medications did not help. We were transferred back stateside to Texas. While in San Antonio a Doctor at Wolford Hall tried “acetazolamide”, he had read some research that said it helped with vertigo, and it did! I am still on it today, a dosage of 500mg per day. I still have ringing in my ears, fatigue and I will begin to sway if I miss a dose or two so I know I need to take it but not having the spinning is such a relief an added value to the quality of life! You might mention it to your followers on your blog.
hi my name is Sandi I’m 47 and live in Mississippi, I have had vertigo for years. In January I had a really bad attack at work, I left and went to a walk in clinic they told me once again I had fluid on both ears and it was making the vertigo worse gave me meds sent me home, that was on a Friday. Well it didn’t get any better so on Monday I went to my doctor, who sent me to a Internal Medicine doctor. He told me not to work or drive sent me for a MRI on my brain. It came back ok so he told me to go see my EN &T doctor. Well I did he told me I had Meniers sent up an appointment to come back and have the Gentamicin treatment. So when I got there the day of he told me he was going to put some drops in my ear to numb it so he could put a small whole so that he could inject the Gentamicin. Well the drops didn’t numb it any he said my ear drum was crystalized and he was has to numd it with a needle. That was the worst pain ever, Well he set up a day for the next week to do another treatment, the pain of the numbing medicine and shot needle was so bad I was begging him to please just stop. Well the next week when I went back for the 3rd treatment I was going tell him I just couldn’t take that pain again, he checked my hearing it was way down so he said he didn’t wont to do another one right then. He wonted to wait 2 weeks check my hearing again. Well it was down even more.I go back 5/9/16 for another hearing test if it’s still down he said we would talk about other options. I still cant work or drive, my I have short and long term disability through my work. Well short term is only for 12 weeks, and that ‘s up and my doctor still has me off work so my job has let me go, I’m having a really hard time dealing with this. I’m dizzy all the time some days aren’t so bad but some are a nightmare. I drop fall a lot, and the buzzing and ringing is driving me crazy. I try to tell my family and friends how it is making me feel they just look at me like yeah right. My husband seems like he gets upset when we are out in public and I get dizzy and sick, says well we will just stay home. I try to explain what I go through everyday but no one seems to understand.I feel like I’m loosing my mind. People look at me like maybe I’m making it all up, but I’m not this is real and I’m scared I’m going to fall one day and end up hurt real bad or worse. I can’t do the things I use to anymore. I don’t get to keep my grandkid’s as much. I tell my family to go online and read about this but they don’t. I have it in both ears but my Left one is the worst. There are days all I do is cry and wont to yell why me. I have stopped trying to explain what I’m going through to people, I don’t tell my husband and kids when I fall and how long I have to lay there. I have days where I can’t remember what day it is. I have had an attack and fell asleep and woke up thinking it’s a different day. One time I thought my husband called and told me to come to the store by our house and pick him up, sat there awhile then called to see where he was just to find out he never called me. I have always been a strong lady, but this is beating me down. I have no one to talk to or to just listen. I feel alone all the time. I just wish I knew how to explain this nightmare I’m going through every second of every day. I just won’t to go away I wont my life back, but my ear doctor has told me over and over it’s not going away.thanks so very much for letting me share.
Hi Sandi, I’m so sorry to hear how much you have struggled. I know how hard it can be to get people to understand. It is very real, but you are also not a lone and there is hope. First of all, I’m surprised that your ENT would diagnose and propose gentamiacin in 1 visit. My first recommendation is to see a NeuroTologist. A neuroTologist (note the T in the middle) is an ENT who has subspecialized in treating hearing and balance disorders and will have way more experience diagnosing and treating Meniere’s disease than most ENT’s. You can search for highly rated ones near you on http://www.healthgrades.com. Also, I don’t know if you have already, but I encourage you to try some of the lifestyle changes that can help with your symptoms. Also take a look at this post: The Ultimate List of Meniere’s Disease Links and Resources. It is a list of every important Meniere’s disease link. Take some time to go through it, especially the list of online support groups. They might be helpful for you. It always feels good to interact with others in the same situation as you. And I’m always around. If you ever have any questions, feel free to email me at email@example.com.
I have been to an ENT who says I have high frequency loss, but that is all. I have had 2 MRI’s, they say they are normal. I believe I have Meniere’s, but no one else thinks I do. It started about 2 years ago. I was a customer service rep in a big box store. I got really dizzy one day and almost passed out. It kept progressing until I had to quit. Now I cannot walk through that store without a shopping cart, or I walk like I’m drunk. I get nauseated, over heated, dizzy. I had to hold on to the shelves before I realized that I couldn’t let go of the shelf to get to the next aisle. I have migraines, and at my new (sit down) job, my 90 day eval was a total failure, as they wrote that I am distracted, get confused, forget how to do job related tasks and have to ask for help. My ears feel full, I have high frequency hearing loss, my left ear hurts like an ear ache off and on. I now get dizzy as I wake up, before I ever open my eyes. If an ENT says I’m ok, I don’t know what to do next!
Hi Roxanne, I’m so sorry to hear that you have been struggling so much. What you should do next is get a second opinion from a more specialized ENT. The kind of doctor you want to see is called a NeuroTologist (notice the T in the middle). They are ENTS who have subspecialized in treating neurological disorders of the inner ear (balance and hearing disorders) and will have way more experience in diagnosing and treating not only Meniere’s disease, but vestibular disorders in general. You can find a highly rated one near you by searching on http://www.healthgrades.com. That’s what I would do if I were you.
Wow spot on had to share people just don’t get it
I have severe Vestibular trauma in right ear with 49% hearing loss , Menieres Desease & chronic migraines, I’m hopefull I will be able to live a good life
It’s just one of those things, people have a hard time understanding what they can’t see. And there is hope!
I am 30 years old. I was diagnosed on Valentine’s day of 2014 at the age of 28. I had so many dreams and aspirations which I now feel are out of reach. I remember my first vertigo attack. It was July 4th, 2006. I didn’t know what it was. All I knew was it was the worst thing ever and I never wanted to experience again. The next day, I went to the doctor and he simply said that my tube was pinched shut and to take some allergy medicine and it would open up. It did and it never happened until the beginning of 2014. I remember feeling pressure in my ear and that it felt clogged. It was like that for a few days but I figured that I just had a head cold. One morning, I had gotten up to go to the bathroom. When I came back to lay down, I just felt weird. Dizziness doesn’t even begin to describe what it was. I just started sweating uncontrollably but yet, I was freezing. Then came the vomiting. I couldn’t stop. I vomited till there was nothing left and then stomach acid. I called 911, scared out of my mind. I had no idea what was happening to me. I couldn’t walk. I couldn’t talk. The paramedics gave me some medicine for the nausea. I was happy to stop throwing up, but I still felt like the world wouldn’t stay still. I get to the ER and the doctor tells me that I’m having a vertigo attack and that I should follow up with my PCP. She gave me steroid because she said I had a severe sinus infection and that it was what caused it and the medicine should clear it all up. 3 days later, same thing. I went back to my PCP, who then referred me to an ENT. He looked over everything and said, “I think you may have Meniere’s disease. Wait here in the lobby, while we schedule you for some tests.” I had no idea what this was. As I was sitting there, I took out my phone and looked it up. My heart dropped and I just started crying. He so causally said it like it wasn’t anything that was too dangerous. He told me that my life would never be the same. He told me that this horrid vertigo attack will forever be an inevitability. Forever there will be that one thought; “Did I turn my head too fast? My eyes were closed and we just hit a hard bump driving down there road, please don’t happen. That brief moment when you feel that heaviness in your head and you stop dead in your tracks. Scared. Petrified. Embarrassed. Even though family members and the people that I love have seen what happens to me, they think that after the vertigo subsides, it’s all fine. But it’s not. Because just like a seizure, another one could happen at any minute. You’re so exhausted. You just wanna sleep for days. When you an ear infection, it’s not just some pain in the ear. It’s the absolute fear that it’s going to happen any minute. You can’t read, write, watch TV, walk, be on the phone, be in the light. Just lay in bed and know that every one thinks you are being “lazy. over dramatic. using it as an excuse.” We, as suffers, have to stand up against this and come together and bring a voice to this silent life-destroying disease!
Margarita Maria Cifuentes Rios
Hello my name is Margarita I am 22 years old. My first vertigo attack was when I was 4 years old my mom took me to a lot of doctors and nobody knew what I had or what to do with me. When I was a little bit older I realized I couldn’t hear at all in the left ear even then nobody could tell me why or what had happened to my hearing. I kept having attacks through all my childhood I didn’t have anybody to teach how to control them all I did when I had attacks was just to go to bed and try to fall asleep hoping that when I woke up the vertigo would have already been gone. When I was 16 I noticed that I was losing my hearing on the right ear as well. I went to the doctor and I was finally referred to an ENT, but it wasn’t much help he just told me it could be hereditary my hearing loss and just to get a hearing aid. A few years later I went to see a different ENT he finally did some tests and diagnosed me with Meniere’s but also he didn’t give me much hope he just told me to eat less salt, exercise and that I was going to end up theft some day to just sit and wait until that happened so I could qualify for a cochlear implant. I did some research I found some information that helped to get better. I watched very closely my diet no caffeine, no alcohol, very low sodium intake exercise lots of water. Before I could find all this information and put it in practice I was really depressed I was only 19 years old and I felt like my life was over I ended up taking medicine for depression. For two years I felt really good didn’t have an attack and my hearing was stable. Last monday I had an attack again this time was worst I’ve been having attacks at least 3 times a day everyday. My hearing has gotten worse without the hearing aid I can’t hear at all and with it I can barely hear. I feel so sick so stress out I haven’t had a job for a year now it is really hard for me to find a job I always end up getting fired because customers complain that I make them repeat themselves a lot or I got their order wrong. I don’t go out I don’t have friends trying to get what someone is saying is so tiring and I feel so embarrassed when they look at me like if I was retarded or something. I have struggle so much with this on my own I have tried to get help but it is really hard nobody gets this disease not even my family they don’t understand what I feel. I live in Canada there are not nearby support groups where I live. Does anybody have any suggestions for me I don’t know what else to do.
Hi Margarita, I’m so sorry to hear how much you’ve suffered from such a young age. This disease is not easy and it can change on your in an instant as you are realizing. My first piece of advice is to find a better doctor. You want to see a Neurotologist, which is an ENT who has subspecialized in hearing and balance disorders. In Canada, you will have to get a referral, but I would start trying now. They will have the most experience treating Meniere’s disease and other vestibular disorders (on the offchance you’ve been misdiagnosed). I would also recommend downloading the Symptom trigger Tool I created and start tracking your lifestyle/diet/symptoms etc. It will be a lot easier to find the patterns and see what might be triggering you now that wasn’t before. You can get it here: https://www.mindovermenieres.com/a-free-tool-to-identify-your-menieres-disease-triggers/ I also recommend joining some of the facebook support groups. It’s a pretty good alternative to regular support groups and can be extremely helpful to connect with thousands of other people in the same boat as you. You can find a whole list of them on this post: https://www.mindovermenieres.com/the-ultimate-list-of-menieres-disease-links-and-resources/
Thank you for sharing your story. I’ve been living in your shoes since the beginning of this year. I hate the Vertigo & drop- attacks. It took 8 months to actually diagnose me. So many doctor visits, CT & MRI machines and being sick physically, it’s been a rough year. But I will try to keep positive, cos it could be worse, it could still be an unknown like it was, I thought I was going mad, but I know what it is now.
Thank you for sharing this, too. I hope things improve for you!
Thank you, Glenn. I think with my sense of humor and the love & support of my dad & close friends, I will be okay. Even when I’m not okay, it’ll be okay.. I won’t let Ménière’s Disease ruin my life. It is good to know that I am not alone. 🙂
Thank you so much for this article. I had found your website last year and your articles have helped me. I am currently 30 and I got diagnosed at 23 years old with Menieres. I had my first attack however when I was 15.
I have my good days and my bad days. I was in remission for the last 2 years or so and when I started working full time and going to school, I relapsed and have been having frequent attacks again. It’s so disheartening because I have this harrowing desire to just be like everyone else. I want to do everything I want to do. Often times I try to ignore that I have it… even at my own detriment. I had an attack last night in class and having attacks in front of new people is such a vulnerable state for me. I struggle with people not understanding and sometimes it hurts when others think I’m faking or just don’t understand. I was very lucky to have my man friend and best friend to help drive me home and take care of me.
Today I read your article about the feeling lazy or guilty for resting. I am so guilty of this. I want to just hop right back up and get going. I feel guilty for people having to stop what they are doing to help me.
I do realize though that in this … I need to learn to love when I have and accept it is as a part of me. Reading your articles makes me cry. I have only met one other person who has Menieres and his case was much more severe than mine… and I could see the anguish he was in. And in that… it felt good for us both to be able to relate. I haven’t let Menieres beat me.
I have been off of medication for my Menieres for two years. After my medication was making me hallucinate and I ended up in the ER with Hypokalema … I stopped taking everything. I have been treating my Menieres holistically and that has helped me so much. Acupuncture is a god send.
I feel for each and everyone of you. I read all comments. Thank you again so much for your articles. They have helped me immensely. Sending all the love and good feels out there to you and each and every one affected by Menieres.
Hey, just been diagnose and trying to learn about meniere. Firstly everyone’s comments have been so helpful. Sometimes I feel like no one understands and to read all the comments has made me feel I’m not going crazy. Thank u everyone.
Kay you’ll find this post super helpful: https://mindovermenieres.com/newly-diagnosed
I was diagnosed almost 8 months ago. I found a chiropractor that specializes in upper cervical adjustments.
This relives the fluid that builds up and end up in your ear that gives you the vertigo. I wasn’t sure I believed it but I do now. He took expats and showed me but that wasn’t what did it. I felt a difference immediately and felt the fluid drain in less than 12 hours. When I felt the bone slip again it was like someone clogged the drain and the clogged ringing started again. Find someone who does this and you will feel a huge improvement with no meds. Just my experience and it also
Helped my sister who suffers from the same thing….
Thank you for sharing your experience Rene. There is definitely a lot of good evidence for this, though it seems to be most helpful in cases of Meniere’s disease with a past history of physical trauma.
i work at a border crossing in Ontario. I started out as a toll collector, but found looking up, down, left to right with Traffic going along both sides of me became impossible for me to tolerate. I believe my problem started approximately 15 years ago when I was diagnosed with Mastoiditis. I was irrigated with three tubes, followed by a typanoplasty to graft the holes left by the tubes. I could never understand why my vision was always so blurry. It was similar to looking through a goldfish bowl. After my ENT finally sent me for a caloric test in London, I found that I had lost 53% of my left Vistibular nerve function. Early one evening I was working a traffic shift, directing traffic, I was called on the radio for assistance, I turned quickly in our truck lane and immediately went into full blown vertigo. I fell in front of a vehicle who’s driver fortunately noticed I was having troubles. That was my last day in our toll department. After more testing I was finally granted an accommodated position working in our janitorial department. I work 5 hours per day, but at 61 years old now am finding that that’s even too much. I average two to three vertigo attacks per month. Generally short lived but oh the nausea.
Now our company wants to re-visit my accommodation. They say I missed too much time from work and would like to see me work more hours per day. My doctor sent me to an a Occupational Therapist for evaluation before recommending I continue at the hours I’ve been working. I feel exhausted after each shift and find I need a nap every day following work. I also find I have to go to bed early every night. The tinnitus, blurred vision, tripping and balance have been the worse as of late.. I cannot tolerate traffic and am very careful when driving. Elevators and stairs are brutal. Recently I broke down after an attack of vertigo and thought that all I wanted to do was die. My life is no where near a happy one. To the general onlooker I look normal but am far from it. I find I am a recluse. Rarely wanting to walk because I never seem to be able to walk a straight line. I loved to golf but my balance is terrible. Love our friends but rarely attend parties because noise and several conversations make matters worse. My opinion in all of this is that a Meniere’s is or can be extremely stressful. Although I thought I had learned to live with this problem I am finding it difficult to cope. A lot of full time work opportunities have been missed because of this problem as well. Reading the postings here everyone has their coping mechanisms. I have a few of my own, but realize that this is a degenerative disease. People and Companies need to be more educated when it comes to this problem. I only hope this story helps others to realize that they are not alone.
Chiropractic helps with vertigo, tinnitus and keeps fluid from building up behind the ears!!!
Hi Glen. I appreciate your blog and YouTube video. I am 37 and feel likeI am living in hell
. About 4 months ago I put the pieces together that I have the same disease my maternal grandmother suffered from… Minieres. After coming down with shingles and a compromised immune system the vertigo attacks came on full force. After researching and going from dr to dr I took out caffeine, alcohol, and lessened to sodium intake to next to nothing. As a teacher, teaching became impossible, let alone driving and well on my worst days….functioning. Some attacks last up to 4 days. It is affecting my entire life, my marriage, kids, future plans, and career. I am finally awaiting on a VNG but my ENT is refusing an MRI altogether. I feel hopeless and anxious all the time. This disease is invisible, and nobody understands it. I am depressed and feel completely alone. Your YouTube video helped me feel that I am not alone. I fear for my future and the future of my family. Even getting on an airplane to go on a family vacation is near impossible, besides the Valium and water pills they prescribe. I feel like a zombie or drunk all the time. I am watching my life slip away. Exercise….how do you do that when your world is constantly spinning? I cannot even eat at restaurants any more because the sodium and MSG sends me into a severe attack. I cannot even stand the sound of my kids being loud in the car or the lights in stores. Any advice would be helpful. Than you.
Hi Amanda, I know how terrifying it all is when you’re first starting out, but there truly is so much hope. So many of us find treatments that work, ways to manage our symptoms, or at the very least, ways to increase quality of life. First things first, I would read this post as well as all of the posts it links to, it’s everything I wish I knew when I was first diagnosed: https://mindovermenieres.com/newly-diagnosed
Then take a look at this post, just so you can see how many different ways there are to treat this thing. So if one thing doesn’t work for you, there are still so many other things to try: https://www.mindovermenieres.com/menieres-disease-treatments/
You words went straight from my brain to my heart, and tears filled my eyes. Yes, that’s what it’s like…and yes, I feel frightened, frustrated, and alone most of the time. Thanks so much for writing this post, Glenn. I shared with my family and friends, as you suggested.
Thank you for your kind words Linda. And hang in there! There really is so much hope. If you haven’t seen it already, I encourage you to check out this massive list I made of dozens of different Meniere’s treatments: https://www.mindovermenieres.com/menieres-disease-treatments/
Thank you. My first attack was so scary that I thought I was having a stroke. My husband took me to the E.R. I think the most heartbreaking of my symptoms was when I came to the place of complete hopelessness. I began to question my reason for living. Despair is an understatement. It’s horrible what we experience. I’ve discovered my only reprieve may be surgery. I’ll tell you what, life matters, people care. They may not understand, but some want to, and life goes on. We can so this!
I was just diagnosed with this yesterday. My husband took me to the ER because my left eye would not move at all, I could not walk, and I was sick to my stomach. The ER did and MRI and told me I didn’t have a tumor or stroke and sent me home with no answers. It took a year and a half and three attacks later to find out what was wrong with me. I think I can still live a normal life. I am hoping the attacks don’t get closer together.
Thank you so much for writing this article. I was diagnosed in 201after years of not knowing what was going on with me. I actually went through a really bad episode last week which left my supervisor of three years really confused (I’ve always been able to hide/manage it at work) at what was wrong with me(he is an ex firefighter so was really curious and kept looking at my eye and hand movements to see what he could figure out or take from it all. I don’t think its fair to keep from him any longer as we have an excellent working relationship. I am going in to speak with him and let him know what’s going on. My episodes seem to hang on for days sometimes over a week on and off and it does cause my attitude to change and ALOT of brain fog until I come out of it. I wasn’t sure how to explain it all to him so he understands what I am actually going through until I found your article. If you don’t mind I would love to print this and take it in his office with me when we speak? Thank you so much!
Hi Jocelyn, sure thing! I hope it goes well when you speak to him. Let me know how it goes!
My neuroENT believes I have Menieres. I have had a lot of imaging tests, bloodwork, and vestibular test. I have had one severe attack, almost 8 weeks ago. I’m still fighting dizziness and have complete hearing loss in my right ear. I have a muffled-feeling left ear. Is there any hope of getting hearing back?? I’m afraid I will lose more hearing. I’m a teacher and this has almost ended my career. If it gets worse, it will end it. It may come down to me getting a cochlear implant. Any encouragement is greatly appreciated.
Hi Debbie, I can’t say for sure without knowing more, but I’ll tell you what my doctor told me. If you can get some control over your symptoms, and stop having vertigo attacks, there is no reason to expect to just lose your hearing.
I know how terrifying it all is in the early days of the diagnosis. Here’s a post that might help: https://mindovermenieres.com/newly-diagnosed
It’s everything I wish I knew early on. Make sure to read all the posts it links to as well. And feel free to email me at firstname.lastname@example.org
This is all very interesting. I was diagnosed with Meniere’s in 2002 and my ENT stately upfront that I already had one of the worst cases he’d ever heard of. I will skip the stories of how this disease has torn my life apart and move on to things I’ve learned that may help others. I take 5 mg. of Valium in the morning (Antivert stopped working for me in 2004) while STILL in the bed and I wait about 20 minutes before getting up to make sure it has time to get into my system. I also take a diuretic as my ENT said it is important to “keep my head dehydrated” to try to prevent the disease from moving from my left ear over to my (still healthy) right ear. If I feel myself starting to spin a bit too much during the day, I take a Zofran to mitigate the nausea because I’ve found that if I let the nausea get too far along, the vomiting starts and it’s much better to prevent it altogether. I also have learned that it is very helpful to lay down on my stomach, face and palms on the mattress, eyes closed, for 20-60 minutes. No movement. This causes the body, including the MANY nerves in the face and hands along with the eyes and ears, to ALL send MATCHING signals to the brain…”We are not moving.” The brain gets happy again to have matching signals and the spinning slows down. (I can actually see the spinning inside my closed eyelids when I first lay down but, as I lay quietly still, that spinning gradually slows down, and then stops. That when I know it’s safe to get up.) And finally, for those who experience difficulty with spatial perception (inability to judge how close you are to furniture, walls, etc…especially if you are prone to breaking your little toes like I am because I always walk too close to the legs of furniture), I’ve recently had relief from that part of the symptoms through the use of CBD oil. Who knew?
My way of explaining Meniere’s to someone is to have then remember back to when they were a kid when they would spin around, get dizzy, and fall down. Now imagine spinning around like that for an HOUR, stopping suddenly, and trying to stand still. And that still doesn’t fully explain how your body reacts to the vertigo. My tinnitus is best described as a high pitched dial tone that stays at one noise level constantly. It ain’t pretty.