Vertigo and Meniere’s Disease

In 1999, our family went to Kennywood Park in Pittsburgh and rode on a stupid roller coaster called the Steel Phantom.  I was so damn mad at that ride when we got off. I was crying because my neck hurt so badly. I swear we all had whiplash. I found out that the Kennywood people re-vamped it after many complaints. It wasn’t too long after that “Ride of Misery”, that I started having problems with my ear.

One day out of the blue, my right ear started feeling like swimmer’s ear. It felt full. Well, I had been swimming in our pool that afternoon. That night when I rolled over, it felt as if water was leaking out of my ear. I was sure my pillow was soaked. Nothing. It was such a weird feeling. This went on for a few days. It felt like someone jammed cotton in my ear.

I woke up one day and everything was spinning. I mean, around and around and around. It ended up being for 36 hours straight. I had to crawl to the bathroom. I had to crawl down the stairs when everyone was in school or at work. I threw up non-stop. I crawled back to bed. I crawled. The one thing I did realize is that my vaccum cleaner wasn’t doing a very good job. I was up close and personal with my carpet. And the toilet. I think vomiting is just so….sickening. I was about to name my toilet, we became such good friends. It was there for me. Tammy Toilet,

I really never thought I was going to get better. I was just going to be a spinning, vomiting, crawling cry-baby for the rest of my life. The carnival ride of death. I took Dramamine and threw it up. I was a mess. Finally, after 36 long, tortuous hours, I felt a bit better and called  and made an appointment with an ENT in Morgantown. I explained the tortuous event, which he named Vertigo.  Vickie Vertigo. I remembered the Jimmy Stewart movie, Vertigo.  He suffered from acrophobia, a fear of heights. Vertigo can be triggered by looking up or down. My vertigo was triggered because I looked.

Actually, according to earsurgery.com, Vertigo is described “as a sudden loss of normal balance or equilibrium. The room may suddenly begin to spin and rotate at high speed. Focusing is difficult, and if the vertigo continues, nausea and vomiting may occur. Vertigo is commonnly caused by acute labyrinthitis (a viral inflammation of the inner ear), benign positional vertigo (a condition due to abnormally floating crystals in the inner ear that stimulate the nerve endings of the inner ear), delayed symptom of head injury, or result of cervical spine problems.”  In a nutshell, I am screwed.

So, back to my visit to the ENT. They put me through some weird tests. They put a balloon in my ears and put water in them, and then blew them up or something. Seriously? Can you imagine the first person they did this to. “Sir, what we are going to do is put this balloon in your ear, and blow it up and then put some water in it.”  They tried to make me dizzy. Thanks alot. I had hearing tests and another where they shut the light and watched my eyes. I don’t know. I guess I should do a google and write the procedures here for you guys to understand, but I’m not feeling it this morning. Anywho, they said my eyes move too much (nystagmus) and that I had Meniere’s Disease.

I had a disease? Hell, a disease sounds contagious. He told me to come back the next time I was having an episode. Sure, I will just have my husband peel me away from the toilet and let him drive me to Morgantown right in the middle of  spinning like a top. This was rotational spinning that would not stop. The ENT told me that Meniere’s Disease is marked by four main symptoms: progressive hearing loss, tinnitus, ear fullness and vertigo. All wrapped up  with a bow on top and given to me. Nice….Oh, and he added, “Stay away from caffeine, salt, and stress. And don’t climb any ladders.”  Funny guy.

So, I went home and did some research. It said that Meniere’s Disease was rare. I joined a forum and found out that it wasn’t rare at all. I made some good friends from Nova Scotia and Saskatoon, Canada and Upper Michigan. People all over the damn place suffered from symptoms of Meniere’s Disease. I started an online group on Yahoo, The Meniere’s Disease Club, which now has over 2,000 members world-wide since 2000. So, no, it isn’t rare. Dizzy is dizzy.

Each person with Meniere’s Disease may have different symptoms. Some lose their hearing over the course of a few months. Some lose it gradually. Some don’t lose much at all. Some people have vertigo attacks daily and can no longer work. It can be a debilitating disorder. I have only had 2 full blown vertigo attacks. I do, however, also have BPPV,  which is short for Benign paroxysmal positional vertigo. It sometimes starts at night, when I lie down to go to bed. If I roll over, I get dizzy. Basically, BPPV is vertigo induced by head movements. Well, hell, just put me in a whiplash collar and send me on my merry way. Great. It was bearable when I was a stay-at-home mom, but when I have bouts now, I can’t really look down at the kid’s desks, or turn my head. And I veer while walking down the hall.

I noticed that in the grocery stores, my buggy veered to the left. When I drove my car into the garage, I veered to the left. Don’t know why. I veer. I can’t walk a straight line if my life depended on it. I hope I never get pulled over and asked to walk a straight line, because they would be hauling my butt off to jail for DUI. It would have to be DWM, for Driving With Menieres. It is such a stupid disorder.

Another symptom of Meniere’s Disease is tinnitus. William Shatner has tinnitus. “No! JIM!”  Tinnitus is noise in your ear. Mine sounds like a high pitched whine. According to Wikipedia, Tinnitus is usually described “as a ringing noise, but can take the form of a high pitched whining, electric, buzzing, hissing, screaming, humming, tinging or whistling sound, or as ticking, clicking, roaring, “crickets” or “tree frogs” or “locusts “, tunes, songs, beeping, or even a pure steady tone like heard in a hearing test. It has also been described as a “wooshing” sound, as of wind or waves.” I guess mine would be described as the “pure steady tone like heard in a hearing test.” Fun stuff I have.

The only good thing about having Meniere’s is that I can sleep on my right side and not hear a dog barking. Or someone breaking into my apartment.  I also am affected by the change in barometric pressure. My right ear begins to  hurt before it rains. Sometimes my ear hurts so badly, like a pencil is being shoved in my ear slowly. I also feel the sensation of a bug crawling deep  in my ear. I just want to jam a Q-tip in there, and kill it. And you know how your ears pop when you travel into a higher altitude? Well, my right ear won’t pop. It just starts hurting. I think my head will explode when I travel by plane to visit my daughter in France next spring. Again, fun stuff.

So, this is my life. Thank goodness my Meniere’s symptoms are very mild. I make fun of myself, so that helps when I have flare-ups. I haven’t crawled to visit my friend, Tammy the toilet in years.

If you have any of these symptoms, hold on. It’s going to be a bumpy ride.  Damn roller coaster. At least when someone calls me a “dizzy blonde,” it really will be the truth.

Update: March 2014….just wanted you to know that I haven’t had a full blown vertigo attack in years, but have a lot of postitional vertigo. I have found that my salt intake is a big part of whether it gets worse or not…also, I have come to the conclusion that diet plays a big part of mine…I can’t eat a turkey breast sandwich from Subway anymore….I think it may be the salt…Weather and change of seasons or a quick change of barometric pressure seems to give me ear pain…everyone with menieres has different little triggers, you have to experiment to find yours….but I believe diet is the culprit….for me.

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18 responses to this post.

  1. Posted by Melissa on March 14, 2014 at 9:47 pm

    Thank you for this article. I just got back from an ENT (finally). I have been struggling with vertigo (severe, couldn’t walk or keep a job when it got bad), ear pain, ringing, and intermittent hearing loss for 9 years…and I’m only 24 now! My ENT noticed immediately that I could not pop my ears, at all! He is sending me to get all the balance tests it sounds like you had. Have you heard of Eustachian Tube Dysfunction/inability to pop your ears/pressure in Meinieres? I noticed that you mentioned this but I wasn’t sure if this was common. I have been tested for everything under the sun at this point from Lupus to MS, and I do not know what things to advocate for anymore.

    Thank you!

    Reply

    • I am so sorry you are going through this at such a young age. Watch your salt intake and stay away from anything that has aspertame in it. I had read that everyone has a different trigger…whether it be stress, caffeine, salt, and funny, but mine was the change of seasons and believe it or not…turkey breast sandwich from Subways. I have a lot of positional vertigo, like almost every day.

      About the ear popping…mine one ear would not pop either. I would drive into a higher altitude and pop goes the one ear, but the other one wouldn’t pop and then would really hurt.

      In the end, after years of having this, I have found that diet places a big part…for me. A lot of regular doctors don’t know enough about menieres so they push it aside and label what you have as something else.

      I have heard of eustachian tube dysfunction. Did your doctor tell you to try nasal or oral decongestants,Oral antihistamines or
      nasal steroids to relieve nasal congestion and enable the eustachian tube to open? If it helps, you found the source of your problem.

      Please feel free to write any time or if you have any questions…I really would see what you are eating and see if there is a trigger. My daughter had painful painful knees a few years ago and we thought she had rheumatoid arthritis…she eliminated meat from her diet and has no pain whatsoever…..mine seems to be salt and weather related. I wish you well!

      Reply

  2. It’s in reality a great and useful piece of information. I am glad that you simply shared this helpful information with us. Please stay us up to date like this. Thank you for sharing.

    Reply

  3. Posted by Lisa on April 24, 2012 at 1:28 am

    I am on disability for 4 yrs now due to my minears disease. I felt so alone, it is a unseen disease so many dont believe you when you explain.. It would be so great to have people who live with it and can understand

    Reply

    • You are lucky that you were able to get on disability. I started a yahoo group called The Meniere’s Disease Club in 2000. It was pretty active for years, but as I moved on, I rarely visited the site and finally deleted the group because of the spam. I did find out that you are truly not alone. I don’t have rotational vertigo anymore, but I had lots of positional vertigo at night and realized that it was all caused by my buying a simple 6 inch turkey breast sub from subway. It has 800mg of salt from that alone. It was the culprit that was making me dizzy. I feel for you, because vertigo and being dizzy is evil. I hope you have been able to find your trigger. I am still losing my hearing. I’d rather deal with that than dizzy. You should start a wordpress site for those with menieres. If you build it,they will come. Best wishes to you!!!

      Reply

  4. […] I was struck down with debilitating vertigo. It was intense, and evil. Evil. See my previous post, Vertigo and Meniere’s Disease. Horrid […]

    Reply

  5. nicely written. i’ve had meniere’s for close to 14 years and one thing i know for sure is you’ve gotta face it with a sense of humor or it’ll get the best of you.

    i just told my husband the other day that the whole water in the ear test should be used by our military to get terrorists to talk. i know for sure i’d give up every secret i had just to get them to stop!

    ~nicki

    Reply

    • LOL..Isn’t that the truth? I would give up every secret too. That is such a weird test. I’m sorry to hear that you have Meniere’s also. I think that I have been carrying an ear infection for a very long time, thinking it was my Meniere’s acting up. I just want the vertigo to never visit again. It’s just pure evil.

      Reply

  6. Good luck with the meniere’s disease I have had it about 6 years and it can be challenging. BTW I am from uniontown originally if you are from Morgantown I know you know where that is.

    Reply

  7. Posted by TheIdiotSpeaketh on November 7, 2010 at 5:21 pm

    Now that I am newly blonde….is this what I am going to face? Yikes! 🙂

    Reply

  8. That’s a long post for someone suffering through the time change today. 🙂

    I was sad for you as I read this post, but laughing also at the Tammy Toilet description. I always think the same way you do about the odd treatments like the balloon. Did someone wake up one day and said “let’s try putting a balloon in them…either it will help or their head will blow up – either way the pain is gone.”

    Reply

    • I know. I woke up at 7:00, but that meant 6:00. I have already had 2 cokes, so I am rambling..lol…I think the best one is the first one ever who decided to drink milk..”See that cow over yonder? I’m going to pull on those things and gonna drink whatever comes out of it.” Can’t even imagine..lol

      Reply

      • Posted by charlene on July 14, 2016 at 11:25 am

        I just came upon this.I have had meniere’s disease since age 28.I am now 51. Salt is the most important thing to eliminate.I only take in 500mg/day The dr.
        told me 1 tsp which is 2500mg is all people are allowed daily but meniere’s folk
        have to limit it.Most people do not realize 1 tsp has this amt. I had a bad time
        in the beginning but have been taking betahistine hydrachloride(SERC) for 20years and it has helped tremendously.I live in Canada but you cannot get it in US.People in Mexico,Canada,Britain and most other countries have it. My main
        problem is balance….and can’t look up or down. I wish you luck…although it
        is annoying….it could be worse right? Take care.
        Charlene MacDowell
        Montreal,Quebec,Canada

      • Thanks for writing. I can tell when I have too much salt, but my main trigger is processed meats…I’ve lost some hearing, but I would honestly take that as a result instead of frequent vertigo. Vertigo is so evil.

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