Admin Post A few years ago I was asked to write an article for Hearing Health magazine (operated by the Hearing Health Foundation) about Meniere's Disease. They had an accompanying article from a doctor about the disease so I wrote about it from the perspective of the patient on coping with it. I'm sharing it here for those of you new to it as a beacon of hope. If you'd like to share your coping strategies and/or thoughts, please feel free to share here! * * *Coping with Meniere's Disease I'll never forget the day my world literally turned upside down, sideways, and then some. It was my first vertigo attack and even to this day -- more than ten years ago -- I can vividly remember being thrown into an emotional and physical tornado. I remember the violent spinning as if on a carnival ride gone awry in the worst way possible, the seemingly endless vomiting, and my bewildered mind crying for the spinning to please just stop. Eight hours later the world finally came to a still and I was able to get back on my wobbly feet. At the time, I shrugged this off to a very bad case of food poisoning, not knowing back then that this was just the beginning of a lifelong struggle with Meniere's Disease. Over the next few years I would be plagued with the Pandora's box of aliments that came with it - violent vertigo attacks, further loss of hearing and balance, loud ringing in the ears, heavy brain fog, and the ensuing emotional trauma resulting from dealing with it. Dealing with the physical part of Meniere's Disease is bad enough, but dealing with it emotionally can be even harder. Imagine the impending fear and anxiety that pours in when you feel an imminent vertigo attack coming - for many, panic attacks kick in at the same time, further worsening the situation. Imagine lying in bed riding out a battle royale going on in your ears and balance system. You're totally helpless and just trying to hang on for dear life, hoping against all odds that it'd be a mercifully short ride. Then there's the damaging long-term effects of having to deal with Meniere's Disease that inexorably changes your life. There's the fear of going out into public places, even grocery stores whose floor patterns and row after row of aisles can make one feel woozy due to being overloaded with visual stimulus. There's the need to alter your lifestyle where you can't do the things you used to love and have taken for granted, such as riding roller coasters or even flying on planes for some. Plus, your own mind starts to question a lot of things that come with any life changing event - agony, sorrow, anger, despair, "why me?", and wondering how to deal with this the rest of your life. It truly does seem like it's the end of the world for many of us that have to deal with Meniere's Disease and it is perfectly understandable given all the horrors that come with it. Yet, the good news is there's thousands of us out there that have learned to deal with it and even live with it somehow. Although Meniere's Disease is considered incurable, there's lots of ways you can try to manage it the best you can. The key is to keep trying to find that right combination of factors that can help you, be it certain medications, or specific lifestyle changes such as reducing the amount of sodium intake, or even just getting in better shape health wise by exercising more. Due to the idiopathic nature of the disease, many different things work for many different folks, so it's important to explore every option available by doing your research and discussing it with your doctor. It's also very important to come to terms with your disease emotionally and mentally. Do not let it control your life! At times you can feel all alone in the world with it, so it's essential that you find a support group that can include your friends and family to help you cope with Meniere's Disease. There's also plenty of places on the internet to find a group that suits you and provides you with the support you need. There's no greater feeling than finding a like group of fellow sufferers who understand exactly what you are going through that embrace you, give you a virtual hug, and then share their ways of coping with a chronic illness. Above all, a positive attitude can go a long way, especially once you're past the "why me" stage. Knowing that you're not going to let this thing beat you and that you're still going to try to live your life to the fullest can be an enormous mental boost in coping with Meniere's Disease. I'm a good example of a success story when it comes to living and coping with Meniere's Disease. Early on, it was a big struggle trying to learn how to deal with it mentally and physically. I was mired in a period of mourning and self-pity and I was letting the disease dictate my life. I even almost lost my own business due to an inability to run it. Fortunately, I decided to plow forward with my life and take it back. My doctor and I researched and found the best ways to control my symptoms, I changed my attitude to one of "I cannot" to "Do the best I can", and as with my profound hearing loss since birth, treated Meniere's Disease as just another obstacle to work around. As a result, my life is as normal as it can be, my business as flourished, and more importantly, I live a happy and fulfilling life. You can do it too! Stay positive, surround yourself with a good support group of friends and family (including on the internet), and don't ever give up - you are not alone. Just remember that the down moments you'll encounter with Meniere's Disease are just speed bumps in the road of your life.
An encouraging story, Solari. Thanks for the work you do to provide us with this support group. It's opened up possibilities for me that I didn't know about previously and that have changed my life for the better in a huge way. Be well!
Admin Post Thank you and I'm glad MM.org has been of help... It was borne of out of my desire to have a place for all of us to come and learn how to best cope with what we have. Ray
TY for your post. I thought I was having panic attacks in the grocery store. I had no idea that visual stimulation was a trigger for Meniere's. I'm seeing a top doc in NC who has diagnosed me with Meniere's in one ear and BPV in the other, but he has zero time to talk or answer questions. Are we born with Meniere's? I was having problems with grocery stores 20 years before I had a Meniere's attacki. Also, when driving on a street that has trees at regular intervals and the afternoon sun flashes through the trees to create a strobe effect I get dizzy and disoriented. Is that the Meniere's? TY again for your time and this information.
I had migraines in my 40s that seemed to be related to hormones. I haven't a migraine in almost 15 years. But I might be using the wrong terms. To me, a migraine means a PAINFUL headache on one side. I did get visual distortions with them. Also nausea. Please forgive me for not knowing much about Meniere's. The doc just handed me a little pamphlet that said no cigs, salt, alcohol or stress. What does MAV in migraine/MAV stand for? TY for your time.
Admin Post You can find more about the differences between MAV and MM here: MAV vs. Meniere's MAV stands for Migraine Associated Vertigo. Personally and anecdotally, some MM sufferers do have to deal with too much visual stimulus (like grocery stores). I deal with it from time to time when I'm particularly sensitive. Ray
TY for that link. I had never heard of MAV. I think I may have MAV. The foods to avoid list is sad - because there are so many trigger foods, but very helpful. I have Osteoporosis and have been eating fruit & cheese daily!! I'll cut out the cheese - sigh. I bounced around a bunch of ENT getting all sorts of strange diagnosis and ended up with John T McElveen Jr MD. I have stayed with him because he gives me shots of liquid prednisone in my Meniere's ear and this treatment knocks out the Meniere's ears ringing, feeling of fullness and dizziness for months. His staff gives me the Epley Maneuver for the BPV. Since his treatments relieve the symptoms, I've stayed with him. I'm so glad I found this forum. I don't want to moan and whine to family and friends. I never leave the house. I go WEEKS at a time going no further than my porch. I had to take very early retirement because of Meniere's and BPV. My husband is wonderful about doing all the shopping and running errands. But I feel like I'm watching life trickle away while I read and surf the Internet. I have stopped driving because turning my head makes me dizzy. Do most of the people in this forum still drive?
A neurologist can diagnose MAV. You may also want to discuss diet with your primary care doctor before dropping cheese if you have osteoporosis. I find it difficult to get enough dietary calcium without dairy products. A nutritionist can help work out a diet that works best for whatever conditions you have, but first you've got to get a clear diagnosis. Treatments for MAV and Meniere's are different. If you can't leave the house, your life is so affected that a second opinion is warranted.
Admin Post BTW, I very much recommend that you find a way to do vestibular exercises that will help you there. The less you move your head the more sensitive it becomes until you're virtually "locked" in. Do vestibular exercises every day to extend your "dizzy boundaries." I'd ask your doctor or ENT or vestibular therapist for specific exercises for your case. In my case in the mornings after I've woken up enough I stand still and turn my head as far as I can to the right... back to center, then as far as I can to the left... And up and down as far as I can. If needed, I'll also tilt my head to each side. I do each movement 2-3 times in the morning and more if needed to "recalibrate" or if I'm feeling off. 99% of the time I feel better when I do this. Ray
TY. I had no idea there were exercises. My doc told me to pretend I was walking with a book on my head and never look down. I'll try your suggestion.
Admin Post Your doctor, of course, may have reasons for this so perhaps discuss it with him/her. In my past experience the more I limited my head movement, the more restricted it became. I believe it also increases stress on your neck and such to lock it up so tightly. Ray
on top of training head movement, my ENT also suggests to train my eye movement using saccades exercise
This YouTube video is similar to exercises my vestibular therapist prescribed. They've been helpful after a bad spell of vertigo and especially after my laby:
Thanks for that video Clare. I should have done more of that after my VNS. At around the 6 minute mark he or she does a move that I really relate to as making me dizzy. He/she bows head then looks backward. Sort of under the arm so to speak. I was riding my bicycle after my VNS, and looked slightly down and behind me to see if there were cars coming, and I almost wiped out. Wobbled but managed to straighten it up. Same with walking my dog and him trailing behind on the leash. I look down and behind me to see him and get dizzy. (Not crazy-dizzy, but unstable-dizzy). So yeah, as part of recovery, I'd suggest walking down a sidewalk and doing that move. But keeping your head looking down & back for a few seconds, while trying to walk straight. Then on the other side. Good rehab exercise. Didn't work for me so much, but whatever. Rehab benefits are vague and possibly unknowable. But we've no choice but to do them anyway. "Can't hurt", as they say. (Unless you do them on your bike).
I was taught for brain retraining that when walking, it's good to avoid looking down and instead keep a distant focus ahead, then to one side, then ahead, then to the other side, then ahead again. These exercises have really helped me, and now -- 3 months post surgery -- I feel my balance is 95% or maybe more. I saw my surgeon this morning, and he thinks I may be at 100% by the 12-month post-surgery mark.
When I'm having unstable moments, looking down instead of forward helps a lot. Good job on the improved balance!
One other thing I noticed -- I got a nasty cold in October that sapped my initiative for any exercise at all, and it laid me back for some 10 days with coincident miserable cold weather outside. Sometimes it's nice when the weather is as miserable as you're feeling. Then the sun came out, the earth warmed up, and I thought I was feeling pretty good. I went out and did a bunch of yard work. In retrospect it was a bit too much. The cold moved to my chest, and I was down for another week. After all that, when I resumed my walks, my balance was noticeably worse than before the illness. Balance seemed to recover after a few weeks, but it was discouraging for a while. The brain and body work in mysterious -- and connected -- ways. I wonder if balance fluctuations will be an ongoing thing.
