Love in the Time of Meniere’s Disease

For most people marriage is a balancing act, but that goes double for me. I’m married to a man with Meniere’s disease, a chronic condition believed to be caused by faulty fluid pressure in the inner ear, resulting in hearing and balance problems. By hearing problems, I mean profound hearing loss, accompanied by an incessant buzzing in the affected ear. And by balance problems, I mean severe attacks of vertigo that forced my husband to the ground, where he had to stay and not move, sometimes for hours.
Heart
Meniere’s disease is invisible to others, at least between attacks. Who would know fluid was swelling the soft membranes of your inner ear? The fluid, called endolymph, must be of a certain volume and pressure within the inner ear to enable normal balance and hearing function. It is thought that for people with Meniere’s, excess fluid produces sudden swelling in one or more compartments and causes severe, episodic symptoms. The disease can progress slowly, which is why my husband, and our family, suffered plenty before he received a medical diagnosis.

Tinnitus – The First Symptom
I remember my husband’s first symptom being tinnitus, or a loud buzzing in one of his ears (other people hear different sounds). He would frequently ask if I was hearing something in the house, but I couldn’t hear anything. What I didn’t realize then was how lucky I was, because the thing he was hearing would never go away. Sure it would get softer at times, and finally it even switched ears. A bad omen, as it turned out, since this indicated both of his ears were affected.

“While no one knows for sure whether excess fluid in the ear causes Meniere’s symptoms or is the aftermath of another problem, we know it’s a chronic disease,” says Seth Schwartz, MD, MPH, otolaryngologist and medical director of The Listen For Life Center at Virginia Mason. “Meniere’s symptoms vary dramatically among individuals and sometimes are progressive. There are treatments designed to manage the disease but for now there’s no cure.”

The Worst to Come — Vertigo
The truly disabling symptom of Meniere’s is severe vertigo: spells of sickening dizziness as sudden as a thunder clap. The first time it happened to my husband he was sitting in a chair in a break room at work – then realized he couldn’t stand. I know from a single episode of vertigo in my 20s what it’s like: for me, everything in my vision flipped perfectly upside-down. I thought, earthquake, but knew the next second that was impossible. Your stomach doesn’t know that, however, so what follows is horrific nausea. Watching my husband having an attack, I understood he was completely trapped by the messed-up signals from his inner ear. No choice but to lie down. Violent vomiting followed minutes later. I wondered how we’d manage our lives, never knowing when it would strike.

Living with Meniere’s
Physicians were consulted who prescribed diuretics (to reduce fluids in the body), steroids (to reduce inflammation) and a low-salt diet (which my husband half-heartedly followed, at first). I desperately combed medical websites to find help with the vertigo attacks, and one sentence on a doctor’s Meniere’s web page had the single best tip. If a small dose of sedative, like Valium, is taken at the first sign of an attack, the worst of it may be avoided. My husband’s doctor agreed to try it and prescribed medication that would dissolve under the tongue. He kept a supply in his wallet at all times. In subsequent attacks he has managed to stay upright, control his nausea and recover much faster using the medication. But like full-blown attacks, he still needed to sleep for hours afterward.

Eventually, he saw a specialist to ask about possible surgery (a last resort in the treatment of Meniere’s due to the risk of permanent damage to hearing and balance function) and learned he could do a lot more to change his lifestyle and feel better. He was temporarily excused from working the night shift, which can stress the vestibular system, and told to cut out salt. For a few weeks now we’ve been cooking at home, with very little salt, and he’s been vertigo-free. The buzzing in his ear actually got louder due to fluctuating fluid levels, but his ear should adjust in time. Plus, living with the condition has, by default, taught him to cope.

“Being very strict with a low-salt diet is key since sodium causes fluid retention and could increase pressure in the inner ear,” says Dr. Schwartz. “Treating symptoms helps many people live with their condition, but there are more aggressive options if needed. The good news is that some cases will go into remission, or what we call ‘burning out,’ though unfortunately people may suffer permanent damage to their hearing or balance.”

For too long I was resistant to the truth about my husband’s condition, that Meniere’s disease is a chronic – yes, that means lifelong – illness. But we are both on board now with making it a manageable part of our lives. Love can conquer many things, even troubled ears.

Comments

  1. Hi Jen, I just want you to know how much I enjoy the work you do for VM (Health, Wellness & Life) your recent article really resonanted. I too have a spouse with a chronic disease (late on-set type 1 diabetes) so I understand the challenges that this can present. Love can and does conquer anything! Keep up the good work.

    • Jennifer Sorenson says:

      Hi Darin! So cool to hear from you and indeed I plan to keep it up. Sharing our struggles and triumphs is one way we acknowlege our common humanity — and I for one think we can’t overdo that. Your wife is fortunate to have your understanding and support. Take care.
      JS

  2. Marc Fredson says:

    Thank you for your honesty and openness in sharing your story!

  3. Judy Simkins says:

    thank you for sharing your story, it has given me renewed hope and I have scheduled an appt. to see one of our vertigo specialists. I have an axtended episode about once a year & can relate to hearing that ‘noise’ that I thought was some sort of mechanical problem with my house. right now I am listing to the right & trying to stay upright and not run into things while waiting it out- thanks again, hope is a great thing. Judy

  4. Jennifer Sorenson says:

    Judy, I am honored by your note. One of the hardest things about this type of disorder is that so few people are familiar with it, or know how bad it can be. That’s why I wrote about it. My husband had an attack in public and I never felt so isolated, knowing people must have been baffled by what he was doing (or assumed he was drunk).
    I wish you the best going forward, and remember that in time things like this always change in some way, often for the better.
    JS

  5. Having read this I believed it was extremely informative.
    I appreciate you finding the time and effort to put this informative
    article together. I once again find myself personally spending way too much time both
    reading and commenting. But so what, it was still worth it!

  6. I have meniers disease which has disabled me from working. I also did research plus my grandfather had it. I found in my research that caffiene n acai berry can aggrivate the disease also. I have elliminated both n it has helped.

  7. Thanks for sharing your story, Jennifer. It is wonderful to see you writing from the perspective of someone who has a loved one with the disease. The disease can be debilitating to the person who has it, but also to the partner of that person who tries to support them. This is the first piece I’ve seen from the partner’s perspective, so I have a question for you (or other readers): do you have any tips or reading resources you would suggest to someone who’s spouse suffers from Meniere’s disease, about how support them but also how to manage their fears and still lead your life? Basically, I haven’t seen much about dealing with the psychological issues it poses, only the physical affects.

    Background: my mother in law is in her late 70’s or early 80’s and was diagnosed with it sometime the last 5 years or so. She gets vertigo and severe dizziness, and wears one (or two?) hearing aids. The vertigo and/or dizziness is bad and she spends a lot of time lying down, rarely goes out (except for a daily walk if she can, or to go or medical appointments). Basically, she finds getting out hard, but also is clearly afraid and has become isolated.

    Yet here is the catch: her husband, who is fully able bodied and able minded, can’t get out of the house either, because she won’t let him. She is so afraid that she doesn’t want to be left alone. She doesn’t want him out of the house and leaving her alone for even twenty minutes. (She also doesn’t like the idea of having anyone else, whether family or a caregiver, stay with her while he is out.) They live in a senior’s community in a rural/small town area, so they’d need to drive at least two minutes to get to the main street (a walk is out of the question now) hence… they almost never get out at all. Which means that HE never gets out, at all (except to go to his own medical appointments). And I do mean at all. He wanted to go to a rock & mineral show twenty minutes away with my husband once, but she had so much anxiety about him being gone that she would not let him go. They can’t even go out to a restaurant for a meal once in a while. Also, because her condition is so debilitating she often doesn’t want anyone to come over to visit. As a result he too is now isolated and stays in the house all day, and/or doesn’t get visitors, day after day, going stir crazy and longing for at least a little adventure in his daily life (but never wanting to admit it too much or wanting to push back fear of hurting her). It has been like this for about a year now since her vertigo and dizziness has gotten worse. She used to be very independent, and they loved to travel. No more.

    I’ve suggested to my husband maybe we or other family members could plan something where his father can go out with one of them, and one or two of us other family members could stay behind with her, just so he can at least get out of the house for a few hours for a break. I’ve been told “it won’t work”. I think it’s wonderful her husband is so supportive, and I know it must be scary and hard for her. However, I can see he is frustrated, and bored, and fear what effects this will have on his well being in the long run. Both of their worlds have shrunk to an indoor area of about 1000 ft sq. Perhaps I am selfish but I fear that at this elderly age, it’s important for his own health that he have the opportunity to exercise his body AND mind while he can, and take care of himself so he can be strong for her. But she’s so afraid of being left alone without him she won’t have it, and he is resigned to the fact.

    Sorry for the long post. If you know of any tips or resources that might be helpful to spouses of people with Meniere’s disease, I’d be interested in hearing about them. Thanks in advance.

    • Jennifer Sorenson says:

      Hello Cate:
      First let me express how sympathetic I am to the plight of your in-laws and how it is affecting your family. In fact your note comes at a time when my husband’s symptoms are worsening, so we’re a bit at sea ourselves trying to adapt.

      Perhaps because Meniere’s is a relatively rare disease, I too have found VERY little information pertaining to support, especially for those who live with the sufferer. There may be self-help books out there on managing the emotional toll of chronic illness in general, but because Meneiere’s is so unique and varies among individuals, I’m not convinced they would help anyway.

      So here’s the BIG qestion: does your father-in-law have access to the internet? Because what I have found for support is online. Not surprising considering that’s where so many people DO connect these days. A good website is vestibular.org, which has a program called V-PALS where people can connect by email; a virtual support group of sorts. Granted it’s presented as a group for sufferers, but I’d be amazed if their weren’t spouses and loved ones on there as well (I have yet to join it myself). There’s also a Facebook page dedicated to Meniere’s. My own mother-in-law is on Facebook (she’s 72), and if you have a decent computer with a fast processor, it can be an absolute delight for the older set (seeing pictures of family and grandkids, etc.) If they don’t have a computer with internet access, and you think they’d be amenable, it might be worth a try. The web is a great way to feel like you’re connected wtihout going anywhere.

      I did read an encouraging personal article today from the creator of another website: menieres.org. You can click on his message on the upper right side of the page. Nothing groundbreaking, and it’s again from the point of view of the person who has the disease, but it at least shares the emotional side of things.

      So here’s the seocnd big question: has anyone inquired about mental health support for your mother-in-law? Whoever she sees as her primary care provider should be apprised of her situation, and they could provide a referral to a mental health specialist. I realize that involves leaving the house, but it’s a medical appointment, after all. Clearly she is overwhelmed with fear and is blocked toward possible solutions (having someone else stay with her). This sounds like a separate problem that needs a separate form of treatment. Of course I don’t know the details of their situation and there could be good reasons this isn’t possible. But maybe with her husband by her side she could be convninced to talk to a professional counselor. It could be too that becuase they live in a senior community, a mental health practioner could come to them, such as a visiting social worker. Again, I am NOT a trained medical person, only a medical writer, so clearly I can’t be certain of what resources may or may not be available in their particular situation.

      Finally one glimmer of hope I can personally offer is, from all I’ve read, this disease doesn’t seem to remain the same forever. It changes, because sometimes our bodies (including our inner ears) find a way to heal or to at least find a better, new normal. You said she’s had it for years and that can be discouraging. But then her physician at some point might hear of a treatment to try, and she’ll try it, and she’ll find relief after all. In fact the one other website I’ll give you is dizzy-doctor.com, which features Dr. Timothy Hain, a Meniere’s expert. There are many other websites that include his information (you can Google his name) which talk in plain language about the very latest treatment methods. Knowledge like this is definitely power; it gives everyday people a way to talk to their doctors about possible new treatment pathways.

      I will close this equally long post (!) wishing you and your parents-in-law the very best of luck going forward. At a minimun staying connected like this will lighten the load for all of us.
      Jennifer

    • Vestibular disorder’s association for people starting this journey, as well facebook groups of other people living with the condition and valium, klonopin or other meds like these to help with the anxiety. This advice comes from someone who has a vestibular disorder and does all of the above. While the chronic condition means you just live with it and try to keep some resemblance of a life together. The key part is knowing there are plenty of others who truly get it and can relate to it, it is very isolating to live with especially with going to dr after dr and no one else seems to get it even when all tests come back saying things are ok.

    • Cate, speaking from deeply personal experience as a sufferer of Meniere’s, I can say that one of the hardest things about being afflicted with Meniere’s and its random and cruelly debilitating vertigo attacks is that even though you are very sick with vertigo and nausea and vomiting, or you are fearful of being sick with vertigo and nausea and vomiting, or you are on drugs to stop the vertigo and nausea and vomiting, or you are recovering from the vertigo and nausea and vomiting — all the while frustrated and angry at the terrible injustice of being burdened by this invisible, chronic, and horrible disease and all the while becoming more and more isolated socially — you are nevertheless forced by others’ needs and by the press of life going inexorably forward to pull yourself up out of your miserable abyss long enough to consider others’ perspectives and lives, most especially those of your loving and supportive spouse, who is bewildered at this drastic decline in the quality of your otherwise wonderful life together and who has stoically decided to “be there for you” no matter the cost to his own health and happiness.

      The abyss, however, is yours — and yours alone. Not his. No matter how much you don’t want to be alone and want to cling to him as you spiral down into forced isolation and fear and sickness, it’s still not his abyss. It’s yours. And it’s lifelong. You may share everything else in life with him, but this — this awful, terrible thing — you do not share. The hardest thing about Meniere’s for me was coming to terms with this solitary abyss while also coming to terms with the new physicial realities of the vertigo, the nausea, the vomiting, the tinnitus, and the balance problems, and then figuring out how to reach across the great divide to others, including my spouse.

      Setting yourself the task of climbing out of the darkness of the Meniere’s abyss long enough to consider what your spouse might need and want is pretty much the last thing in the world that you, the Meniere’s sufferer, wants to do or has the time, health and inclination to do. After all, who cares what he needs when you are doing your best just to be upright and not vomiting? This takes every inner resource you have, you say to yourself, so the least he can do is stick around 24/7 to either tend to me or be there in case he needs to tend to me. Right?

      Wrong.

      With supreme effort and out of great love for your spouse you must come to terms and peace with the fact that the dark Meniere’s abyss is yours, not his, and set him emotionally free to live his life and pursue his own happiness to the fullest extent possible. In practical terms this means you may sometimes face the vertigo demon or the fear of the vertigo demon by yourself or with others who are not your life mate so that the person you love who is not beset by this demon is free to play in life’s sunshine once in awhile — because you love him and you want the best life for him.

      The hardest thing to accept is that the best life for him may — for 20 minutes at a time or several hours at a time or even a whole day — not include you, and it definitely does not include being imprisoned by your Meniere’s.

      I know exactly how your mother-in-law feels and I also know she will have to be willing to make a great sacrifice and let her husband go back out into the world without her recrimination and resentment and fear, though he may never appreciate what a truly amazing sacrifice this is for her and what a difficult gift it is for her to give. Only one thing will make it possible for her to climb out of her Meniere’s abyss long enough to give him this gift of freedom: Love.

      Well, two things, really: Love, and some really great meds to stop the vertigo while he is gone.

      Or, as in my case: Love, and the vestibular nerve section surgery to permanently stop the vertigo so that I can get my life back and go back out into the world with my husband.

  8. Melanie says:

    Cat and Jennifer, thank you for posting, that is one thing I’ve been looking for is some sort of support group, my husband was diagnosed in February and can be very trying at times…Someone has to be close by incase he has an attack, he gets a little anxiety when he ventures out on his own. He will not go out to events because he is worried an attack might happen. sometimes i feel like im sounding selfish since I can’t help him and we can’t do much together, as you know families are restrained on a daily basis as far as outings go, just wish there were support groups for the family members to see what they have done to help, to make the “no attack” days more full filling. Its just messed up that his life (and others that suffer) are literally changed and for the most part homebound all the time. Thanks, Melanie

  9. Hi there! I could have sworn I’ve visited this blog before but after going through some of the articles I realized it’s new to me.
    Regardless, I’m certainly happy I discovered it and I’ll be book-marking it and checking back often!

  10. Aw, this was an extremely good post. Taking a few minutes and actual
    effort to produce a great article… but what can I say… I procrastinate a lot and never seem to get
    anything done.

  11. Susan McDevitt says:

    Jennifer, your husband is blessed to have such a compassionate life partner who understands how bad the symptoms of Meniere’s can be. I was diagnosed when I was a newlywed. I was once was away at a couple resort in the Pocono Mountains with my husband. While having dinner in the dining room I had a drop attack. My husband had to carry me back to our suite and onto the floor of the bathroom where he proceeded to hold my hair away form my face while I vomited for what seemed like forever. When the vomiting subsided I slowly lifted my head to realize we were surrounded by floor to ceiling mirrors! More than 25 years later we are still together. He has been with with me through it all. My brother was diagnosed with Meniere’s as well a couple of years ago.
    I learned that my symptoms were being triggered byan un-diagnosed TMJ disorder. I found relief after 25 years of suffering. i have learned that others including my brother have symptoms triggered as well by a TMJ disorder.I created a page to raise awareness so others may know that TMJ disorders and Meniere’s can share the same symptoms. If you would like to review the articles and info I have gathered please feel free to view them.https://www.facebook.com/MenieresNoMore and here is my life with Meniere’s

    http://menieresnomore.tumblr.com/post/41411753297/my-years-with-menieres

    I hope your husband learns what triggers his symptoms.

  12. I feel for your husband because I have lived through this. I have worked in supporting sufferers at Menieres-Help.Com for over 10 years and for the past 5 years we have been studying and researching underlying causes and triggers for Meniere’s.

    We now know that nobody has to live with this. There are many possibilities but everyone can find their cause(s) and deal with it. If you want more info just email me direct at menierehelp@gmail.com

  13. Susan McDevitt says:

    Thank you for contacting me. I was diagnosed in 1987 with Meniere’s. I was told I had to learn to live with it. 25 years later I learned that while I was considered a “textbook ” Meniere’s patient that a TMJ disorder was triggering my symptoms. after having consistent non fluctuating relief for one year I created my FB page https://www.facebook.com/MenieresNoMore to raise awar3nes and post articles and information on how TMJ disorders can cause our symptoms. I am now celebrating 2 years of consistent relief. I git my life back when I was told I had to liv3 with it. I now feel compelled to pay it forward so others may find relief as well.. MD is often considered a diagnosis of exclusion. Everyone needs a consult with a dentist who has had their additional training in how TMJ disorders can cause our ear related symptoms. Sadly not all dentists have this training. I am happy to chat about it. I wish you all Spin Free days.

  14. Hi there everyone, it’s my first visit at this website, and piece of writing is truly fruitful for me, keep
    up posting these articles.

  15. I was diagnosed in 2011 with Meniere’s and am now seeing a TMJ dr as I believe that my Meniere’s is actually TMJ! a very severe case of it as it happens. Just had a visit with a specialist who has a 3D imaging machine and what I saw on it was amazing. My Condyle was almost in my ear (my “Meniere’s” ear) and is chipped. I go to a Physical therapist to work on the neck issues for awhile now and combined with the TMJ treatment which for me will involve a Gelb device and braces (clear ones) I am hopeful that this may be the end of many if not all of my Meniere’s symptoms. I highly recommend that your husband and anyone reading this go to a qualified TMJ dental specialist. Hope your husband and all sufferers feel better..

  16. Laurie Cranston says:

    I have suffered with Ménière’s disease for many years and I enjoyed reading your article. There is surgery for someone with severe sudden onset vertigo. I had the surgery and it was a huge success with the dehibillitating vertigo. It affected my hearing a small percentage, but my hearing had already been affected by Ménière’s and the end result far outweighed the loss. I still have the tinnitus in both ears and some things can trigger vertigo, like flying, but at least I can function now. I also have Valium with me at all times just in case!

    • Jennifer Sorenson says:

      Hi Laurie,
      Thanks for your comment, and I just passed it along to my husband. He may be curious what surgery you had, since his ear specialist has just suggested a type of surgery, involving the disabling of the balance nerve. It sounded really scary and permanent, considering that leaves you with only one side intact, and what happens if that one goes bad? Perhaps he’ll mail you, and anything you’re willing to share would be appreciated. It is a lonely road!
      Jennifer

      • Jennifer the sectioning of the 8th nerve is permanent and risky with losing hearing. The other portion of the risk is now you have half a functioning balance system and if attacks the other side you would be like a fish in a bowl upside down without any clue as to your orientation in the world. Scary and a last resort in my opinion. I was offered this option as a way to short circuit the signal from my left ear that was causing my balance troubles. I researched it on my own and decided against it.

  17. You sound like such a great support for your husband. That keeps the stress away from him so he can get better. I know people who rushed into surgery..one proceedure to another and then it doesnt see, to work but goes in the other ear.

    Best advice I have…Read up on all about Meniere’s on blogs like this and books on the subject…I found Full Catastophe Living by Jon Kabit Zinn was exceptional, I read cover to cover and over and over. and his set of CD’s for meditation, not expensive. We both use these. Also Meniere Man books, like Meniere Man and The Astronaut, inspiring and practical help.And a little red book by Peggy Holloway, her memoir. Then all these threads here. Everyone has jems of inspiration. What is strange to me though is how this old disease seems to not be a rare disease. Not only in our family, but I personally know people who have the disease now. The ones that do have stressful jobs.?! Hear your thoughts on this.

    • I just read the post on query operations…I think your husband sounds smart and is naturally on to it…looking at his lifestyle. Maybe his body tells him enough, like a flu or cold does. Stop with the late nights.
      You are right though, surgery just sounded scary…from what I read..there is no operation yet that is risk free and is an actual cure. My friend also had the operation where they cut the nerve and her operation went wrong. She had to walk all over and was never really right. Later she got meniere’s in the other ear.

  18. I would not discount the TMJ route. so many people do and have and I am in touch with quite a few who said that is not my problem only to find out it was. In Sweden they treat Meniere’s as a TMJ and Cervical issue and this is exactly how I am treating it. Please have your husband see a qualified TMJ specialist who has a 3d imaging machine to really see what is going on. Regardless I also recommend having your husband go for cranial sacral body work and Atlas bone work. People are getting help without having to resort to surgery. Good Luck!!

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    • Jennifer Sorenson says:

      I loved getting your comment, because it’s what I’ve been trying to do: present unique, useful or educational material that won’t pop up elsewhere. And that’s why I’m behind! I’m definitely working on topics that meet the criteria but not everyone’s on my schedule, ha ha. Stay tuned and thanks for reading.

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  21. Raghunadh says:

    Hello People,

    This is the success story of over coming menieres by my mother.
    I’m Raghunadh from India.
    My mother is 53 years old, she got effected with menieres 3 years back the symptoms are she gets vertigo attack and collapse immediately and followed by Vomiting and Diarrhea simultaneously.This happens at least thrice a week. It’s a very hard situation to come across. ENT doctors preferred for a surgery, but considering her age and side effects i’m not keen to get it done. I started in search of any alternative to get rid of this tried all sorts of things like meditation, nutrition supplements as per Mike’s (http://menieres-help.com/) but things remain hopeless. This prolonged for an year and half, then i decided to give a try with Ayurveda, I found Ayurveda doctor and explained the case and started the treatment. I’m surprised with the treatment Ayurveda doctor treated the menieres attacks and symptoms stopped in just 2 months, its been 20 months now i haven’t seen my mother suffering from menieres. Doctor has suggested to continue the medication which my mother is still continuing it. It costs nearly Rs 3000 ($50) per month.
    Hope this would help people in India or from any part of the world.

    I’m posting this in all the blog’s, in the intention someone might get useful information from this 🙂

  22. This is new for my husband and I since January. It’s been a long haul. To see him smile at times now makes me pause and enjoy it. He is full of life and this has been very hard on him and the family. I will say it took a couple of months for us now to be stable being on low salt diet. It’s killing him though! But he doesn’t like the alternative. I feel for all of you that have this, I’m not as strong as my husband he pushes and pushes. I hope his body gets a break. The top ENT we saw said you can have salt don’t be a freak about it your body needs some. As long as it’s always consistent. He says he has people that there diet consist of teriyaki sauce everyday with rice! ( The most highest product with salt) he said the key was to keep it even all week eat meals same time. But that didn’t work for my husband, Oh he tried but found out very quickly. Low salt was the key for him! Take care all!

  23. I’ve been living with Meniere’s (not autoimmune or virus related) for 34 years now. The best thing I ever did was to have the Endolymphatic Shunt Surgery 3 years ago. It gave me my life back! Still deaf, have regular and pulsatile tinnitus, off balance a little, however the daily, violent vertigo attacks that lasted for 4 to 6 hours are gone! 🙂

  24. Patricia says:

    Oh!!!! What a devastating but real piece of writing I hava just read!!!! It’s me!!! It’s my life going on!!! You’re right, eventually you end up accepting what you encountred out of the blue: MY FRIEND MENIERE, The buzzing, the tinitus, the medication, habits changes, in order to make my life and my family’s more bearable, and mainly to reduce the possibility to have these discapacitating ATTACKS. Please Virginia, let’s keep in touch!!!

  25. I have had Miniere’s for 30 plus years. I had endolymphatic shunt surgery and live vertigo free. I have only had a problem when under extreme stress such as moving.

  26. Here’s my graphic honesty while into my 16th year of Meniere’s. My objective vertigo episodes (room spinning) are few and far between, some comfort there, but I do suffer with a nagging daily subjective vertigo my wife and I describe as being in a subtle wave pool. To turn the head rapidly triggers a strong wave, so I try not to; neither do we take long trips anymore. Daily I expect and experience regular balance disruptions depending on the intensity, rapidity, time put in, and nature of any given activity. When my ear nerve does fatigue my movements are strained; sometimes I feel almost a kind of paralysis (not a lack of dopamine, but perhaps ear ATP energy). On better days balance disruptions are like iterative little surges that I can adjust to. Then, there’s the dulled sense of my body parts near other objects in space, brain fog, sensitivity to barometric pressure changes, and frustrations of every kind. The paradox is that when “my ear gets happy” from a full moon’s forces, or a rising barometric pressure, sleep leaves me and I’m awake for the day. I offer some experience-infused tips: build up your core body strength (planking more, falling less); have a prescribed comprehensive eye/head/body motion 7 week program (approx. 130,000 accumulated reps) to retrain your eyes/brain to override ear weakness; avoid exposure to high decibel sounds, as well as high frequency and intense low frequency sounds (which spill over and irritate the labyrinth); stay active & sweat, cry & yell discreetly (still learning about grief and nightmares), expect to sustain some injuries anyplace on your body (e.g., scratched cornea, cuts, bruising from bumps & falls); and keep some kind of a list of things that you figure you’re able to at least try to do on any given day. Moreover, help yourself navigate through the forest of life by exercising your brain, which you will find is much of the pioneer’s struggle with this disease that can leech away your life if you allow it to. That said, expect to make mistakes that you never thought you’d make before the onset of disease. I tried to be enrolled in a double-dose Gadolinium enhanced MRI clinical test in order to have clearly defined visual data of my affected ear (e.g., scar tissue?). The gracious doctor did respond to my plea for help, but told me the diagnostic test wouldn’t help me (doc not at fault). Elsewhere I’m told, “I can’t treat something I can’t see.” While true, I’m convinced more clinical work is necessary to accurately pinpoint sub-categories of the esoteric disease of Menerie’s. It’s going to be okay, but those with inner ear disease have to learn to live smarter and face untold challenges (e.g., warehouse shopping and winding/bumpy roads). You can trudge through this, but you have to calculate your movements more, plan more, and do love others more, and enjoy love from them more. Keep learning to face this life-dominating disease with uncanny courage!

    • Ray Johnson says:

      Hi, I have menieres going on 7 years now. I will apologize up front for my grammar. I had all the studies imaginable. Tried all the meds possible and came close to finally having surgery, to hopefully end my misery!
      I read a study that was done on the assumption that Menieres was caused by a virus
      that inflamed the inner ears. They gave one half of people and antiviral and the other a placebo. The results were very positive. But not conclusive.
      I decided to ask my doctor if I could try an Antiviral and he said sure. It can’t hurt to try.
      I started out with 1200 mg of Acyclovir 3 times a day. After a couple of months I noticed
      the pressure that I usually felt was not there anymore. But keeping in mind that I was on a low sodium diet as well. So I stayed on the same meds for another six months with no attacks, but I still had the dreaded ringing in my left ear. Then I saw my doctor again and he asked how I was. I told him all seems better and I’m gaining weight back. But I still have the ringing in my left ear. I also said I would like to stay on the Acyclovir if possible.
      So, He dropped me down to 300mg of Acyclovir twice a day. Because he was concerned about the large does I was taking and that it seemed to him I only need a maintenance does now. He also prescribed 20mg of Paxil for Anxiety. Because of my stressful job and lack of sleep.
      So, after 6 more months my ringing in my ear has virtuously stopped. On a scale of one to ten, mine has gone from a ten to a one. I can tell you by my own experience that the noise was so loud that I thought death was preferable at times! Anyone that really has it knows what I mean!
      I hope that anything I’ve said here helps someone else. I know how it feels.
      Ray

Trackbacks

  1. […] in the ear and ear fullness, especially when recurrent, can lead to an uncommon diagnosis of Meniere’s disease. How quickly symptoms come and go is very important, as is what brings on your vertigo. All vertigo […]

  2. cara cepat mengatasi kutil kelamin

    Love in the Time of Meniere’s Disease – Virginia Mason Health & Wellness Blog

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