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May 26, 2017

Meniere’s Disease: It’s like a perpetual thrill ride without the fun

An inner ear disorder makes me avoid quick movements, Japanese cartoons, patterned floors and Joy Behar.

Meniere's diagram

My head is its own perpetual thrill ride.

If I move my head too quickly, everything starts spinning. Floors feel like they are dropping or being carried away by ocean waves. If I’m around a strobe light, the air around me starts to pulsate and the blinking colors replay in my head for hours.  If the room is quiet, I can hear the sound of buzzing  bees or feedback squeals from a microphone. Sometimes, I can barely hear at all even though I’m surrounded by noise.

Welcome to the world of Meniere’s Disease. It’s a chronic condition caused by an imbalance of inner ear fluid that creates spontaneous vertigo, tinnitus and hearing loss.

The inner ear is home to a fluid-filled cavity that is lined with hair-like sensors. The sensors respond to movement in the fluid and help the body assess motion, balance and sound. However, this fluid needs to retain a certain volume, pressure and composition so that the sensors can work properly. When the fluid goes rogue, people like me end up hugging a floor.

My jacked-up ear fluid can make an ordinary day feel like a trip to Six Flags, minus the $64.99 admission fee. When my inner ear rebels, I feel the sensations you would feel on the Tilt-A-Whirl ride or after a game of Dizzy Izzy. Walking is difficult, but staggering around and falling sideways are very easy. Face-to-face conversations are challenging because my rapidly darting eyes make others think I’m watching a ping-pong game while I’m talking to them.

There is no cure for Meniere’s, and treatment options are limited. My diagnosis 14 years ago led to me limiting my salt consumption so that my body doesn’t retain extra fluid.  I take Antivert to reduce the vertigo, antihistamines to reduce fluid in the ear and Valium to slow everything down when the inevitable episode does hit. I also do my best to avoid things that I know will trigger an episode. My list of triggers is weird and sad:

  • Police cars:  I react to the flashing blue lights.
  • Japanese  cartoons:  I am living proof that some folks fall out watching these.
  • Patterned floors: I can’t  walk on them because the patterns look they are moving.
  • Ocean  waves: I used to love sitting on the beach and watching the waves roll in.  It was  gloriously peaceful. Thanks to Meniere’s, my body feels like it’s being pulled and pushed along with each wave.
  • Jazzercise and  Zumba: The quick  movements make me dizzy. I am also ridiculously uncoordinated.
  • Light  shows: Twinkling  Christmas lights are so beautiful and playful, but I can enjoy them only in very small doses.  Sadly, I will never be able to enjoy a  Pink Floyd Experience laser light show at my local planetarium.
  • Electronica music: Not a  huge personal loss.
  • 3-D and IMAX movies: I felt cheated by having to watch the flat screen version of “Avatar.”
  • Airplanes: Take-off  and landing mess with my head. I confess to using the helpful bag located in the seatback pocket MANY times.
  • Amusement  parks: When your head is its own thrill ride, who needs amusement parks? I do. I used  to LOVE rollercoasters.  When the Rip Ride RockIt opened at Universal Studios, I was determined to ride it.  I knew better. The ride video, which I forbade my family from purchasing, shows my eyes rolling around my head and my numerous attempts to keep from  spewing. I struggled with walking and nausea for two days after that  incident. Today, my amusement park participation is limited to holding    purses and water bottles while my family rides.
  • “The View:” I’m not kidding. The women on this show trigger episodes of vertigo and  hearing loss for me.

Despite medicines and trigger avoidance, Meniere’s episodes can still pop up out of nowhere. The inner ear decides to proclaim, “I OWN YOU! Sit your butt down and don’t move!” You have no choice but to comply. I’ve met other Meniere’s sufferers who have been bedridden for days because the spinning won’t stop. A few are afraid to drive because they fear a sudden attack. The symptoms can be so unpredictable and debilitating that some Meniere’s sufferers are unable to work.

Thankfully, my symptoms have not incapacitated me for long stretches. I’ve been able to accept the episodes, but I certainly do not like them. My doctor suggested a surgical procedure that would stop my episodes by destroying the inner ear and its connecting nerves.  The procedure would also destroy my ability to hear.  Most people have Meniere’s in only one ear, and after surgery, the other ear easily compensates for hearing loss. However, Meniere’s impacts both of my ears and has already caused some permanent hearing loss on each side.

Even with the promise of relief, I don’t want to have the surgery.  As much as I hate the spinning, buzzing noise and nausea, I love the sounds of my life – my kids’ voices, music, laughter, rain and even bubble wrap.

I also love thrill rides –  but only when they’re not in my head.

 


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26 Comments on Meniere’s Disease: It’s like a perpetual thrill ride without the fun

  1. I don’t know much about menieres beyond what I learned in nursing school, but my professor did mention that she had a friend with menieres/severe vertigo who, after PT for neck/back tension found the problem almost completely gone. It’s worth a try! 🙂

  2. I’ve had Menieres for two years. My episodes last a minimum of 20 hours once they begin. I can’t walk, I vomit & spin & sweat until it stops. I have tracked each episode & they are all typically alike starting day or night. I’ve had 26 so far. I quit 2 jobs because the episodes struck while I was driving a van & working in a hospital. I now live off of my savings & husband’s income. I take a diuretic & eat a low salt diet. My life has changed because I must think twice before I make plans to do anything. Eating out is no longer an option because of the salt content in the food. When I have a good day it’s a thrill to shop for groceries or go for a coffee (decaf) I’m going to a specialist in Boston next month with HIGH HOPES. I’ll always stay positive & never give up, life is too precious.

    • Hi Nina- when you go to see your specialist in Boston, PLEASE ask about the Minette’s Lo-Pressure generator. It has given me my life back!!!!! I see a fabulous specialist here in Florida, Dr. James Atkins of the Florida Ear & Balance Center at Celebration Health. Best of luck to you!

    • Hi Nina,
      I don’t know if you know it, but Meniere’s is a cause for disability. You have to show that you are diagnosed with it and have recurring vertigo. So that might help some since you can’t work any more. I would look up the disability page where I found this out for you, but it’s late and I’m afraid I’d just give you some wrong link.

      Things change every day. I have very advanced bilateral Meniere’s with 2 cochlear implants. For the past few months I’ve had a lot of vertigo, but much less forceful than it used to be. Well, most of the time, and they don’t last as long. I’ve been under a lot of stress so I’m sure that’s a big factor. There are different treatments. I’ve tried quite a few, and usually I do pretty well.

      if you are unilateral, you have a lot more treatment options. I hope you can get a higher quality of life. Our lives may not be what we expected, so I have decided to just change my expectations….as many times as needed.
      : )

      good luck.
      wendy
      http://picnicwithants.wordpress.com

  3. Hi Kim,
    I too have Meniere’s, and talk about it a lot on my blog. Yes, some people will claim they have been cured, or some other thing that has made it stop….Unfortunately, Meniere’s is one of the most over diagnosed diseases.

    But those of us who really have it know. It’s a Disease of Random Punishment….we never know when it may hit. My doctor compares it to a soldier on the front lines…always waiting for the bombs to hit but never knowing when they will.

    There is a treatment that I underwent, it’s called Endolymphatic Sac Enhancement. Some people have Sac Decompression, or Shunt surgery….go not let anyone actually put a shunt in your ear….IMHO. My surgery was pretty much a radical Mastoidectomy. It makes the enclosure around the Endolymphatic Sac larger so it has more room to expand. That way it doesn’t leak or press on other areas. This really helped my vertigo. (now I have a lot of vertigo from another health issue, but that’s another story) If you want to know more about this surgery, drop me a line and I’ll give you an exact post on my blog that really explains it. I think my email will pop up where you can see it since this is a wordpress blog and so is mine. I’m at Picnic with Ants. (one more thing….You don’t lose your hearing with this surgery!, and if you ever have to have a cochlear implant, this is the first part of that surgery so it is much easier)

    From what I understand if you have the surgery that kills your hearing, you are not a good candidate for a cochlear implant.

    I am VERY advanced in my Meniere’s. I’m bilateral just as you are, I lost my hearing….fast after many years. I now have 2 Cochlear Implants. they aren’t exactly like normal hearing, but they get better and better as you wear them. But you are not hearing like others. It’s different. But you do hear. and as I said, it gets better and better the longer you have it. and everyone is different, there are people who hear pretty normal immediately. I’m not one of those, but I’m doing pretty good. (I haven’t had them long)

    Sorry so long.
    I hope this give you some hope.
    Getting too hot is also a trigger for me…..so going through menopause is a challenge.

    good luck!!! wendy

  4. Hey Kim,

    Just a question about your hearing loss… I am (mostly) deaf on both ears as a result of a different inner ear problem. If the surgeries will completely kill your ear, you could check into getting a Cochlear Implant. My Pops has one, and it has been amazing for him. He’s worked his way up to about 60% comprehension. The biggest change has happened in the last 5-10 years whith the upgrades to the external pieces, so it’s not like you have to have the units for 30 ears for them to be helpful (admittedly, he’s had his since 1987).

  5. My husband was diagnosed about 4 years ago has lost a significant amount of his hearing. this disease is so terrible and I’m at a loss as his best friend and no cure. thank you for sharing this…

  6. This is the reason I won’t talk about my Meniere’s on my blog. Once ya do, inevitably you’re going to get people claiming they’ve been HEALED by “this” “that” or “the other”. ALL BUNK!

    I’m a bilateral sufferer, with attacks happening daily. This blog was brought to my attention yesterday, and later that night, I was downtown in a big city, and had an attack. I struggled to get from one place to another, inching closer and closer to the train to get me back home, to my safe haven; the bathroom floor.

    EVERYTHING was setting more spins off… the lights, the cars, the sidewalk, the people walking past me, the sounds, the stress!!! And I must have looked like a drunk, wobbling side to side, trying to hold onto the wall of every building I passed……

    This is my life. I’m like the Author…. I won’t get the surgery to take the spins away, because I don’t want to go completely deaf. The hearing loss I have now is bad enough, but living alone, the wee bit of “sound” I hear is my only friend.

    It’s a very lonely existence for those of us who suffer with this disease, without a partner or spouse…. I can’t make plans with friends, because I’m always cancelling due to an attack. I can’t drive far for fear of having a bad attack and getting into a wreck. I can’t hold a job, I can’t dance anymore, I can’t go to events when I AM feeling well, unless they’re in a very quiet place, and someone is there to watch over me. That doesn’t happen often. Once or twice a year, maybe…..

    Meniere’s has stolen my life, ruined my credit, ripped my dreams to shreds and left me fighting for my life on so many levels. Writing is what has given me a semblance of joy, when I’m able to sit for a while and FOCUS. I am grateful for those moments.

    Moments are all I have left, due to this disease. I wouldn’t wish it on anyone!

    • Thank you for sharing your story. I’m sorry you’ve had such a rough time with the disease. I wish there was more the docs could do, but I’m with you on the surgery — it’s not worth losing the little sound we have left. I sincerely hope you can find some relief. This disease sucks!

  7. I am an audiologist who works with several Meniere’s patients. I work with their hearing aids, but do not work with an ENT. I work with the ENT as they are treated there, and I reprogram their hearing aids with the ever-changing audiograms they bring to me. Thank you for a very clear insight on this fascinating disease. I hear many of these symptoms from my patients suffering with Meniere’s. They are dedicated to finding normalcy in their lives, and I just help them hear as well as I can. Your words will provide comfort to some, and I will pass this along.

  8. Wow, I had no idea that is what has been causing my issues all these years!! I was told I had Meniere’s disease many years ago. I went to the doctor for always being dizzy and getting “inner ear” infections. The doctor mentioned it to me one day but said there was nothing that could be done other than taking gravol etc to help the nausea. I am one of the most clumsy people on the planet, constantly banging into things and constantly telling people to speak up and I seem to always turn my head slightly to the left to hear better. It makes a whole lot of sense now. I also cannot even look at jello, the wiggling make me sick. You would think a doctor would tell you the issues when the “diagnosis” was given. After listening to some of the issues here, I am understanding what a lot of the problems I have been dealing with for the last 25 years or so are from. Thank you for sharing your story – it makes me feel almost normal knowing it wasn’t just me and that there are a lot of you out there suffering from the same thing. I am thankful it is not as severe as some. Is there anyone else who has misophonia? The fear of sounds to go along with it? Growing up, the sound of someone slurping or eating almost sent me to the crazy house, I would scream out in a rage, but I have learned to control that most times. It seems the 2 may be connected with me. I would really like to know if there is anyone else experiencing the same thing?

  9. That must be awful to live with. I get dizzy watching my kids spin round and round. Swinging on our swing set makes me a little uncomfortable, but I’m totally with you on The View! Watching that even as I’m clicking by makes me ill, but mostly because of the people sitting in the chairs talking, save Elizabeth!

  10. I have suffered from Meniere’s since I was 13 years old, I am now 40. I have an AMAZING Meniere’s specialists, Dr. James Atkins at Celebration Health outside of Orlando Florida. When I wanted to get pregnant but not have to take all of the drugs, he suggested a new therapy called the Meniett’s Low Pressure Generator. It is manufactured by MedTronic Xomed. It has changed my life, and given me my life back! I have a small tube in my ear and the machine has a tube that you stick in your ear. The machine sends air pulses through the tube in your ear which creates waves which causes the fluid to flow. It takes about 7 minutes for the 3 cycles to complete. When I first got it 10 years ago I had to use it at least 3 times a day and carried it with me everywhere. Now, I typically only use it when I first wake up in the morning, unless I have been misbehaving with my salt intake or it is that time of the month where women’s fluids get wonky or I have a head cold. I cannot recommend the Meniett’s enough…I’ve gone through painful injections in my ear, spending days in bed holding onto the railing and crawling to the bathroom to get sick, having episodes while driving a car, falling face down on the sidewalk resulting in 14 stiches in my forehead and a broken nose, 2 black eyes, and busted lips. The Meniett’s kept me from having to get the surgery you mentioned. It has truly changed my life. I am still deaf in my right ear (my primary offender) and I still walk like a bad drunk sometimes, regularly stub my toes because I misjudge an entryway. I am a kultz in every way possible, I hold the railing when I am on the stairs, and I avoid 3-D movies, but I no longer live in fear. Meniere’s no longer owns me, I am now in control. Best of luck to you, and thank you for sharing your story!

  11. My husband has this too and severe tinnitus and positional vertigo . We accidentally came upon something that has stopped his episodes of vertigo. Vitamin D daily. He was sent to a specialist in KC who could not come up with anything except recommendations. 2 months before he’d started taking Vit D because I did. Turns out Vit D was the recommendation.so far, do good. I know everyone is not the same, but thought it might help someone.

  12. Have you explored naturopathy or homeopathy….God placed so many amazing option on this earth for healing….don’t listen to western medicine’s limited toolbox…..

  13. My Father has had this for almost 20 years now. Thankfully there’s actually a new surgery that relieves the pressure without damaging the hearing. My Father qualified and hasn’t had an attack since the surgery. He went from almost 100% disabled to being back at work full time.

  14. Hi, I just chanced upon this blog and saw this article. I was recently diagnosed with Meniere’s. I used to have vertigo attacks, and was always told i just got it from my dad’s side of the family. But early this year a vertigo spell wouldn’t stop even with my medicine, and was just then diagnosed.And it really sucks to know that I can have an attack anytime, and there are longer term effects. I haven’t had an attack in the last couple of months and the worrying has been kept at bay. I haven’t figured out all my triggers yet, but it was fun reading yours.:)

    I had to go through some tests, but some have said I need to do an MRI. Did you have to do an MRI to confirm? Thanks for this article, it was a fun and informative read. 🙂

    • No MRI for me, but this was about 10 years ago. I can’t remember exactly what the test was, but it involved filling my inner ear with warm water. I remember getting hit with unbelievable vertigo and nausea, and they said my eyes were shifting very quickly.

  15. I guess I am lucky because I only have the disease in one ear. I have only about 19% of my hearing left in that ear. I can’t use a telephone on that side, all I hear is static. What really bothers me is the fact that one sided hearing loss affects my ability to tell where sounds originate. I hear a sound and have to do a 360 turn to figure out where it came from. It’s worse outside. I am absolutely clueless. I pretty much have the vertigo under control but I don’t even go to the bathroom without my Valium. Chocolate is a trigger for me. My ENT says that sometimes the disease just eats away the bone and when that happens, the vertigo stops. He thinks I’m close. When that happens my hearing will also be completely gone. In the meantime when I get that not quite an attack fuzziness, I get a steroid injection in the ear to reduce the swelling. But, could be worse. Like you said, it can be so debilitating that some people end up bedridden or in a wheelchair.

  16. I too suffer from this mean disease. You described it perfectly. My favorite is when a new trainer at the gym wants to get me to do all the fun balance exercises or frankly anything that moves my head from a level plane. I am pretty sure they think I am faking it. Joy!

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