What it's Like to Live with Meniere's disease

You all asked for it, and here it is!

I have finally started making videos about Meniere’s disease! (and Tinnitus too.)

I actually made the decision last week but struggled to decide on what I should talk about first. And then it hit me. My very first video should be about raising awareness. It’s really hard to explain what it’s like to live with Meniere’s disease, and when the people closest to us don’t understand, we can’t expect more from anyone else.

I created this video to explain what it’s really like to live with, and to be diagnosed with Meniere’s disease. So that you all can have something simple to share with your friends and family. Something that just might get them to understand.

I hope you all enjoy it! And I promise there will be a lot more of these videos to come.

Make sure to subscribe to both of my new YouTube Channels:

Mind Over Meniere’s YouTube Channel

Rewiring Tinnitus YouTube Channel – I have already created two videos about learning to live with Tinnitus! One about what it actually means to habituate to the sound, and the other about the strategies I used to habituate.

I hope you enjoyed the video! If you have any suggestions, comments, feedback, or if you have a good idea for a video topic, be sure to leave a comment below. Thanks everyone!

  1. Well done Glenn, I already read in your book and articles what you said, but it was a real pleasure to hear you talking about it .

      • I’ve been suffering for 6 months. Can’t drive and I’m loosing my mind. I suffer from RA in my lower spine also caused from multiple spine surgeries. I’ve been everywhere and tried everything but lymphatic massage and adjusting my nose. I’m loosing everything from this nightmare.

      • Machelle - anne Tewnion

        I cried watching this because it related so much to me.

        Thank you for giving me some hope. I can’t wait to read everything you did to live in harmony again.

        Thanks for also raising awareness

        … I’m going to make this my mission too Xx

  2. Thank you for this. I will share it with my friends and family. Raising awareness is important! Although I have not had a true vertigo attack in a few years (thank God), I still have the other symptoms, and it’s still a daily struggle with tinnitus, brain fog, balance issues, and hearing loss. Keep up the good work!
    Becky

    • Hi Gwen, I tried to figure it out the other day, but was having a difficult time. I have it typed out, I will definitely try to get it working!

      • Well I take it it’s a great video but menieres has robbed me of any decent hearing I can only use sub titles now if you manage to sort captions out I will have another whirl ( pardon the pun)at it!!!
        I do have a very understanding hubby and some family and friends understand ,not all tho!!!

  3. Thanks for this its a good example of what we suffer, i never can shut my eyes or its way worse, i have to stare at a blank object, like a plate close to my face, oh how i hate this disease…..

  4. It’s exactly how you explained
    I have MD and was diagnosed a couple of years back now
    I am medicated and thankfully my Dr is well knowledgeable on MD and now I can do normal things and manage to keep my job so far

    Don’t let it rule your life just take it with you and live is my advice and my motto X

  5. It is so gratifying to know I am not alone in this world of Meniere’s. For many years I suffered alone, though my father had it, his was not as severe so he really didn’t understand why mine was chronic and his was occasional. I often call myself the sober drunk, laughing to keep from crying. I am divorced after 33 years due partly to Meniere’s. Thank you for putting a voice out there to enlighten those who do not understand.

  6. Incredible video. Spot on man.

    I have “lived” with it for about 12 years now. Thankfully haven’t had an attack for about 3 years. Tinnitus through the roof! But I’m still standing…..!!

    You are doing an incredible job with this mate. I once wrote some books on dealing with Tinnitus a lot going time ago.

    They say a Menieres sufferer who complains about their tinnitus is not too bad off as they are not complaining about the dizziness….

    I am constantly slightly off balance but thankfully not as bad as I was several years ago.

    Great stuff man. Shared your video with another person I know who has it.

    Keep up your great work!!

    • Thanks John! I really appreciate the encouragement. Did you mean to say that you read some books on dealing with Tinnitus? Or did you write books? If you wrote them, I’d love to check them out! My second book, which is all about learning to habituate to Tinnitus, is coming out within the next month or two! You can check out some of my work so far at http://www.rewiringtinnitus.com

      • I wrote one. It was a very long time ago. Never sold it – gave it away. It’s buried deep in my hard drive some where now. I tried doing what you are doing here and made a blog, built an email list etc.

        But it didn’t feel right. I tried to sell tinnitus related products. This was a wrong move on my part. There is so much snake oil out there. I shut the site down.

        I still write and blog but in other niches and topics now. My ultimate goal is to move away from the traditional 9-5 and work from home.

        I live fairly comfortably with my condition now. It can be achieved…….

        • Hi John, if you ever do find it I’d love to read it. I know how much snake oil there is out there for the Tinnitus Community. It’s mind boggling. If you search Tinnitus on Amazon, so much garbage comes up. Even most of the books are just attempts to capitalize on the high search volume and are 20-30 page “Pamphlets” of just basic research info written in most cases by a hired freelancer. When you click to those authors pages you see different books on different medical buzzwords, all the same attempt to make money. I tried really hard on this one to create something new. In my journey with Meniere’s, I sort of stumbled onto interesting treatment approaches that really helped me and I think (I hope) to offer something unique and helpful. At this point the only real option for relief is habituation. There’s no way to reliably reduce the noise, but you can get to the point where it stops bothering you, even if you still hear it. I totally understand the feeling you are talking about though.

  7. Thank you for sharing this informative information! I’ve suffered for 9 1/2 years with MD. I started getting worse this past November (which I didn’t think was possible) and I now have a specialist. Nothing is helping anymore, so my 1st Meniere’s surgery is scheduled for August 9th. I will also be receiving Cochlear Implants in the near future after the Meniere’s surgeries are over. Awareness is something that needs to be spread over and over about this debilitating disease … Now I shall share your video of awareness with my FB friends! Thank you, again!!!

    • Thanks Ramona! I wish you the best of luck with your surgery and cochlear implants! I really, truly hope that they both help you.

  8. Wouldn’t it be great to know what the cause is, or causes…in my case I think of it like I blew a gasket in my ear after a couple of years of severe stress “bang” it happened, and you know the rest…I think a lot can be done to alleviate symptoms if you understand the triggers. I get attacks during menstral cycles. But I believe that my neck muscles and jaw is where it all started to go wrong. I manage with diet exercise, yoga, breathing techniques and when the tinnitus is just awful, I use sound therapy in the affected ear. I practice balancing and push myself to do unusual things for an MD sufferer like Bike riding and shoulder stands! Swimming and boating are fantastic. For some reason the movement of water is very soothing. And I always massage myself around my ear, jaw and neck to get blood flowing. I still drink beer in the evening if I want, and one coffee in the morning, but definitely no salt, if I can help it, and drink plenty of water. The last thing I want to say is that being outside is heaven, when the wind blows past your ears it alters your balance mechanism and is very soothing, the natural light is better for blurry vision as well. Being inside is awful, there is pressure issues in closed rooms and vision issues with bad lighting. I hope this helps x

    • Rebecca I couldn’t agree more. And I’m so glad to hear you’ve been doing so well! Thank you so much for sharing this. I truly admire your attitude!

      • Hi I suffer with md and my specialist has limited my daily intake of fluid to 3 pints a day has he said the fluid can build up into your ears and that can cause an attack

        • That’s a new one for me. I’ve never heard of limiting fluid intake, only limiting salt to reduce fluid retention. Has it helped?

  9. Thanks Glenn for this amazing video, I reposted it on my timeline in hopes that friends and family will see it and understand. I have already gone completely deaf in one ear , the nystagmus sets everything off, so I practice eye exercises daily.Always foggy and ear pressure drive me nuts. it is people like you who understand that make it easier for us to cope. Thank you.

    • Aw thanks Marilyn. I appreciate the kind words. Glad to hear you keep up with the eye exercises. And the brain fog and pressure definitely can drive you nuts! Even on many of my best days, I still deal with the brain fog.

  10. Thanks for creating this video! If I had a quarter for every time someone said, “But you don’t look sick!”, I’d be rich!! I was diagnosed last November after a YEAR of specialists and tests and constant vertigo ( as well as vision changes, poor balance, headaches, ear aches and ringing, nausea, and anxiety that produced panic attacks.) I really thought I was dying. When I got the diagnosis, I was relieved at first, but spent the next day crying. You’re right, it’s hard to have hope in the beginning of this disease. I have made diet changes which have helped tremendously, and I am taking a medicine that is working very well for me. I am so thankful to feel better. Not like before my disease, but a “new normal”. I am thankful for every good day I have now. My bad days occur less and less. I love what you said about sharing our stories. I couldn’t agree with you more! We need to share with others to raise awareness and to be a light for others who have this disease. There IS hope! I look forward to more of your videos. God Bless you!

  11. Your video was right on. I have been suffering from meniers disease for over two years. I went to the the doctor over a dozen times and she kept telling me it’s migraines. I knew it was not eventually I went to a head doctor thinking I had a brain tumor or something. That’s when he told me about meniers disease. I just started seeing a ent a few months ago. You really do lose hope with this disease it affects my whole life. I have young children and never know when I will have an attack and not be able to function and take care of my children. I’m hoping some day things will get a little easier to deal with. It’s good to know I am not alone in this battle, because you really do feel alone when dealing with meniers. Thank you for sharing your video look forward to reading your book.

  12. It is so difficult to have a this disease. I am living in Greenland with this MD in seven years I lost my job because of this. But I have any jobs now so I am habby. I hope there is a cure

  13. We live in Canberra, Australia and my husband has had Meniere’s Disease for 27 years. His first attack we thought it was food poisoning. Took several years before he was diagnosed. He has had an operation in his left ear, not sure of the name of it. He had a valve inserted. He takes daily medication and has cut all salt in his diet. Last few years he hasn’t been as bad. Has lost most of his hearing and now wears hearing aids in both ears. Your video is spot on. Thanks

    • Thanks for sharing that Janette. I’m glad to hear your husband is doing better. I thought my first attacks were food poisoning too. I told all my friends not to eat at the restaurant lol.

  14. Thank you so much for your kind words. It was like hearing my story. Thank you for explaining the condition so well. I will definitely share. I think it will not only help raise awareness but might also help sufferers who think they are going crazy by identifying the symptoms. Thank you again.

  15. Hi Glenn
    It was really good (in a sad way that you suffer this too) to watch your video and know someone understands what this pig of a disease does. I’m 18 months down the line from a transmastoid laby and learning to cope with the trade off I’ve had to make – though at times the loss of hearing in than side can be a blessing! Boring people are less of an issue!! I’ve managed to hold onto my job all thought this roller coaster ride. A little determination goes a long way – that’s not in any way to belittle those who haven’t been able to. Unfortunately, it’s looking as though I’m going bilateral so the future is uncertain once again. However, I will fight with all I have in me to find new ways to cope! Hope you and all the other sufferers out there are going through a good spell 😀

    • Hi Emma, I’m sorry to hear that your Meniere’s may be going bilateral, though I really admire your spirit! That’s amazing that you were able to find ways to keep working through it all! Did the laby stop the vertigo entirely for you? I also am able to manage quite well. I haven’t had a vertigo attack for several years now, though I do still get all the other symptoms. Thanks for sharing your story!

    • Emma, when you go bilateral, Is it like starting over with MD? ..curious if its like getting MD all over again with the Vertigo

  16. This video was great my ENT won’t diagnose me all the way with Meniere’s even though I have all the symptoms. She just keeps leaving it at BPPV because Meniere’s is uncommon and rare even though most of my symptoms don’t ease up. It was super scary at first but the more I read about the disease the more I understood that it was a lifestyle change. Thanks for shining a light on what most people couldn’t begin to understand

    • Hi Dayshia. You’re experience with your ENT isn’t uncommon. I would try to find a good Neurotologist (An ENT who has subspecialized in treating balance and hearing disorders) in your area for a second opinion to hopefully get a more concrete diagnosis. You can find a highly rated one near by on http://www.healthgrades.com

  17. Thank you !
    I am one of the cases resulting with deafness. This has to be the 2nd worst side effect of the disease. The first being the spinning and third being the constant ringing. I hear high pitch sounds but everything else sounds like radio static muffled with swooshing noise. Hearing aids amplified the swooshing and I felt agitated.
    Most people say they don’t mind repeating themselves.
    In reality, what actually happens is they stop talking to you.☹️.

    • I’m so sorry to hear that Mare. Have you lost your hearing bilaterally? Also don’t forget that Cochlear Implants are always an option as well! I know a lot of Meniere’s patients who have gone that route and couldn’t be happier with the result. I’d be happy to connect you with one of them if you wanted to hear more about it from a fellow sufferer.

      • I have had Ménière’s disease for over twenty years
        My worst bout kept me out of work four and a half months that was nine years ago at that time I had gentamicin treatments to my ear at mass eye & ear in Boston it was very debilitating at that time four treatments it took which is unusual I was told it would last three to five years I am so fortunate because it has lasted nine years! Four weeks ago I had a drop attack went back to mass eye & ear & had another gentamicin rx feeling better hope to be back to work soon over the years I have developed a hearing loss in my left ear it’s now a 78 percent loss but I am blessed to keep on going
        Hope to read your book soon my brother sent me your information thank you I hope we can all help each other

  18. That’s great Glenn. I really like the hopeful note, as so many people get into that helpless-hopeless mode and spiral down into depression. I’m a psychologist so have all the skills to help myself, but still find myself spiralling down sometimes. It’s a tricky tight-rope walk to find the balance (what an appropriate word!) between providing inspiration for hope and seeming like you don’t really understand – you manage that tight-rope well in this video, your book and your other articles so thank you.

  19. I have suffered with Meniere’s for about 9 years now. I have had 6 gent shots in my right ear. They don’t seem to last more than a few months to a year. I have also been on mega doses of steroids several times. After being treated a couple of years, I was diagnosed with it in my left ear. They did 3 steroid shots in that ear. Since last October I have been going through a very rough period. Before, the vertigo did make me very sick and I would vomit and lose control of my bowels at the same time! It was awful. I couldn’t close my eyes but had to focus on something that was right in front of me. Now, I am having really severe vertigo but no vomiting, just nausea. I was having up to 5 attacks a day. The specialist I was seeing is 1 1/2 hours away and I just can’t do the trip anymore. Besides, the treatments are very expensive. I wear hearing aids but the tinnitus is very, very loud in my right ear. I have 25% hearing left in my right ear and 50% in my left. I do see a local ENT and we are trying allergy shots (I am allergic to palm trees and live in Florida!). Hopefully they will help. Haven’t had a true vertigo attack in 4 weeks but am constantly feeling dizzy. Now that I have all that off my chest, I do still work and am thankful for that. My co-workers and boss have been great! My husband has too but it has really changed our lives. I keep going because I know it isn’t a fatal disease and I can still function. I don’t like going places but I make an effort. Thank you for sharing everything.

    • Ryllis, wow thank you so much for sharing your story! I’m amazed and inspired that you are able to work despite everything that you have had to endure. I’m also so glad to hear that you haven’t had an attack in 4 weeks. I know the fear is still there but that definitely seems to be a much better place than you were before. Quick question, are you in South Florida by any chance? (Thats where I live.) If you are, I know of a couple great Neurotologists in the area that might be able to help as well. I hope the allergy shots continue to help you. Allergies are a big trigger and I cant imagine living down here and being allergic to palm trees! Thanks again Ryllis.

  20. We now seem to be narrowing in on a cause. It appears that both MD and vestibular migraine are a vascular disease. Where blood flow is cut off to brain and ear hair cells, starving them of nutrients. It appears to be genetic in origin or genetic susceptibility to an infection that causes it. It is probably time to call it all “migraine spectrum” diseases.
    See research at University of Colorado Denver and a (really poor audio) Youtube interview with Dr. Hain (Chicago or Mayo? I forget) about treatment option sequence.
    I found verapamil helps a lot. It is the step after low sodium, no cafeine, etc. to start. Behisten (SP? not in U.S.) is also widely used and people like it.
    Note that people with MD may develop VM later in life. Very hard to tell them apart since, you may not have a headache with VM! But soreness, loose movements, etc. The main way to tell is the numbness and touch sensitivity of one side of your face during bad attacks.

  21. I I live in Cape Town South Africa. Have had menieres for almost 3 years. Am suffering with constant headaches between episodes. Can live with hearing loss and tinnitus in right ear but the daily headaches, imbalance and fogginess are awful. Nobody really understands because I look well. Please where can I get a copy of your book.

  22. Awesome Video Glenn. My Mom who is now almost 80 years of age is battling Meniere’s for the last 16 years or so. Life has changed dramatically for her and also for me. We have both gone through a lot together. I appreciate your attempt to create awareness for this wretched disease and wish you all the best in your efforts.

  23. My journey started in 1969 and I did not get a diagnosis for 10 years. Thanks Glenn, I started with DPPV and they found Meniere’s about 15 years later. Lost most of my hearing, had 2 decompression surgeries, medication, antidepression meds, anxiety pill, had a long bout with agoraphobia after a surgery failed. So many changes, tinitus, drop downs, migraines, etc. I just love your explanation on this video and can’t thank you enough. It is a lonely illness until Meniere’s Resources, Veda, and others arrived. We can reach out and help each other. It’s been a long journey for me and still going. I face each day thankful if I can get a few things I want to do done. Once again, Thank you so much.

  24. Thank you so much for this. You have truly helped me keep positive about this infliction. I read your book at a difficult time and it gave me the positive perspective I needed to continue trying different things to get it under control. Thank you for all that you do.

  25. Hey Glenn…….. I think it’s great that your talking about Meniere’s. I was 24 and at work when I dropped like a stone, and as you said life was never the same. It took 9 months to find a Dr. that had a clue of what was happening to me. It’s 19 years later and I have trouble almost daily, but have learned to deal with it the best I can. So hard for people to understand that your ears can cause so much trouble. They mess with everything! I have hope that someday there will be a cure, but until then I do what I can when my ears allow it, and have found ways to stay happy even with the world spinning around me.

  26. Thanks Glenn.

    I was diagnosed 17 years ago. I didn’t leave the house for 2 years but slowly with lifestyle changes I managed to get back to work.
    I’m a singer and the deafness so far is only in the one ear.
    I also suffer terribly from recruitment or..hyperacousis
    Things do get better but it takes loving support and a healthy lifestyle.

    • I am a rock and roll drummer, because of Hyperacousis, i have had to give up my dream as a drummer for now……Its very hard,,some noises you would think would bother dont, and some that seem tolerable do bother…Its so weird

  27. I was lucky to find a good doctor early that figured it out. That was about 6 months after my first attack. The hospital and my family doctor were both clueless. I’m overweight and 50 and through this process also discovered type 2 diabetes. This video pretty much described my experience to a T. I have devoted myself to lose weight and exercise and hopefully with proper diet I can maintain some control of the symptoms.

  28. I also got the right doctor quickly because my GP is amazing and I see her regularly. Thank you for the video, it is going to be shared with some people who ask me why I am sick when I look “just fine”. My life is fairly decent because I work hard at knowing my triggers and I eat properly but it takes lots of work and I am tired most of the time but tired is better than vertigo. Thank you for being my voice, you are a hero to people who suffer with something very difficult to explain.

  29. Another amazing thing I discovered is a very nice gel temperpedic pillow – a little pricey at $199 – however when I put my affected ear (left) down on it, the tinnitus is muffled and add a xanex and I sleep like a baby. Sleep in regular patterns seems to be a big key to good days for me so it makes life good.

  30. Glenn, I want to thank you for the videos, and the page…I sufferd for 6 months and lost my job before i was diagnosed..I need advice on how to manage finding a job, and or some kind of help …I am a single mom of a 17 year old son with Sickle Cell Disease..So our lives were already complicated enough, when this came on….Is Menieres a disability? I am the only provider in the household….We are living on a shoestring, and I must earn money to live…I know your readers and followers have super great sugesstions, as do you….Again, THANK YOU for your blog and book and newsletter…..You are a godsend!!!!

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