Sunday, July 8, 2012

What did you think when you had your first Meniere’s attack?

I remember my first (small) attack. I was driving home and pulled up into the driveway and my head started to spin. I didn’t think much about it; to me I was just a little dizzy. Of course it wasn’t too long after that episode that I had my first major attack and unfortunately it was at work. I thought that I was having a heart attack. The doctor at the emergency told me that I wasn’t having a heart attack which was reassuring but I was still baffled as to what exactly was going on with me.

I didn’t know much about balance disorders at the time and I really didn’t know very much about vertigo. As for Meniere’s disease I hadn’t ever heard the term before.  I was scared this was all very strange and who knew where it would lead.  After I was told by the first ENT that I saw that it was Meniere’s I knew that had to do more than a little research to find out what it was all about.

Luckily we live right now in the internet age where we can communicate with each other about Meniere’s and how it affects our lives.  And that is extremely important for those folks who just recently had their first attack and didn’t have a clue what was happening to them.

So what was your first attack like?

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  1. My first attack was without a head started spinning to the right without being able to control it worst then a rollercoster.It hit me so bad that I started walking and felt on the floor and pass out for a few minutes.avoid pools dancing any activities that makes ur body spin or fast motion.hope u get well.if that continues they put u on meds for 3 months if the meds don't work they might end up removing fluids from ur ear but can end up loosing ur hearing

  2. Richard in MiamiJuly 8, 2012 at 5:34 PM

    I'll never forget my first attack -- not that anybody ever will, right? I was just watching a TV show around noon on a Saturday and suddenly I started feeling a little nauseated. Then the room started spinning in one direction, and every time I blinked it would start up again spinning in that one direction, just like I recall the one or two times in my life when I'd gotten drunk. The nausea increased but I never threw up. And then I got all clammy. I just wanted to die. The combination of those horrid feelings were about the worst I'd ever experienced. And as if all of that wasn't bad enough, when I stood up, I lost my balance and almost fell over. My partner caught me in the nick of time and I sat right down again.

    About two hours later, it all subsided. I chalked it up to something I'd eaten that must have been bad. Around 8 o'clock that evening I had another attack of the same four symptoms, only worse. This time I started really freaking out and told my partner to rush me to the emergency room. Walking from the car to the emergency room entrance I had to be held up because I was so off balance that I was walking like a drunk.

    When I finally got seen, I was given something intravenously that relieved the spinning, and then something else intravenously that relieved the nausea. Then the clamminess subsided. I got to go home after a couple of hours there, but was told to see an ENT doctor ASAP. I did. First I was diagnosed with labyrinthitis, but that changed to Meniere's a couple of weeks later when my hearing didn't improve even with high doses of prednisone.

    So that was my introduction to this horrific condition. By the way, David et al., in case you don't know of it, there's an interesting Website all about Meniere's. Here's the URL if you'd like to visit it:

    Stay strong, everybody.

  3. I heard my baby down the hallway wake up in the morning. I went to get up out of bed and fell out of the bed to the floor and hit my head on the dresser....several I was being thrown. I had to crawl down the hallway with my eyes closed to my baby and lie on the floor motionless, vomiting. The only thing I could do for my son was to kick the crib to let him know I was there.
    I obviously needed help so I crawled on my back down the hall again to get to the phone, vomiting and retching the whole way. I knocked it off the night stand and hit re-dial. Shear luck, it was my mom.
    I was right by the back door so I worked the lock with my toes and feet so she could get in the house.
    When she arrived I had vomit everywhere. My brother came too and he dragged me to the bathroom where I was retching so badly I had uncontrollable diarrhea. It lasted 5 hours. I was 26.
    Now I get to start over again 17 years later with my other ear only now I am well seasoned.

    I already had a diagnosis of Meniere's a few months prior to my first vertigo attack so I knew what it was...just didn't realize how awful it would be.

    1. OMGoodness! That truly is the worst story I have heard! My ENT specialist told me my last visit that after you have had the disease 10 years (my 10 year anniversary) you are at a much lower rate to go bi-lateral. So now you are bi-lateral?? Can you describe what that means for those of us who may eventually go bi-lateral??

    2. I suspected I was bilateral during my second pregnancy (1998), 3 years after my initial diagnosis in 1995 in the R ear...but everything restored to normal after the baby was born and I resumed my diuretic on a more normal basis. I opted for the EMS in my R ear, 5 months after the second pregnancy. I would do GREAT until 2005 when I began to have severe head noises, like freight trains and tuning forks in the center of my head and drop attacks. This would continue on/off (more off than on) for another 6 years. Then last year, on the day the earthquake in Japan, it felt like someone had put a drill to my L ear and it wouldn't stop. Severe pain. I couldn't hear at all and I would begin to have vertigo attacks from that ear.

      The tinnitus and head noise is HELL and now pulsatile.

      Enter the Neurotologists....
      What can I say...Meniere's is chronic and progressive. Treating some allergies...etc.

      I've only lost low tones in the L ear thus far. I think steroids saved me, initially, and I'm off them now. The word recognition is quite bad in the R ear as it has been for 17 years but I can no longer hear music from the R ear.

      What does this mean? It means many doctors and opinions...It means I drag myself out of bed each morning feeling like death, forcing myself to work out...because the endorphin load helps as well as sweating (being fit and in shape is very important to my balance)...I don't socialize anymore because I don't want to explain my situation....I carry around ear muffs for loud noises...I take naps from the drugs....I still drag myself to work, now with FMLA...I now have a hearing aide for the L ear...and it means a good cry once in awhile in my closet or on my 78 year old mom's shoulder.

      If I need it, I will have another EMS and get cochlear implants.

    3. My attacks are much like yours. I have had the dizziness last well over 24 hours and have been hospitalized - dehydrated and worn-out from the vomiting and diarrhea. It's terribly frightening. Now, each time I get a bout of anything more than motion sickness, I start to have panic attacks which just aggravate the problem more.

  4. Hello
    My first series of attackes happened in my early 20's. I may have had 3 attackes over the space of 8 years. i thought nothing of them, as i would have vertigo and vommmiting for about 2 hours then afterwards i would just sleep it off, next morning i would be totally ok as if nothing happened.
    But, when i was 29, one day i got real dizzy, and started vommiting to the level i had never seen or felt (excorcist level), bile was coming out. Went to A&E, they put me on some drugs, came home and I thought that the next day after my sleep i would be fine. how i was wrog since then i have been dizzy on a daily basis with many attacks over the following years.

  5. My first attack occurred in similar fashion to Richard's, it was a Saturday afternoon in early March of this yr, and we had people coming for a birthday party for my youngest son and step-daughter. As I was sitting at the table, the whole room started spinning to the left. I had noticed for a couple of days prior that my right ear was plugged, or full, pressure feeling, but the nurse at work didn't see anything. I also had the constant tinnitus for a few months prior but thought nothing of it. Anyway, I stood up from the table and staggered my way to the stairs and up to my room. My wife came up to check on me and I told her I didn't know what was happening but I'd be back down soon. I felt like I was going to throw up, but never did. A while later I felt better enough to rejoin the party, and an hr later, struck again. I went back up to lay down and this time crawled to the toilet and had dry heaves but never actually vomited. I went to an urgent care center a while later, and they did a CT scan and said it showed nothing and I have a viral inner ear infection, just take decongestants. I woke up once that night feeling dizzy again, laid there until it passed and fell asleep. I woke up later and felt fine. We were getting ready to do some grocery shopping when it hit again, this time so bad I couldn't stand up, I broke out in a sweat, and my wife said my hands turned pasty white, so she called the emergency squad. I was initially diagnosed by the hospital and my PCP with BPPV and my PCP said it would pass within a couple of weeks. Every day from that point I was hit with several lower intensity attacks, the fullness coming and going, until I went to a EN&T, who diagnosed me with MD. I still have dizziness, none as devastating as my first few episodes, but after a CT scan, MRI, 6 decadron injections, a tilt table test, and VNG balance test, my diagnosis is still up in the air. The Neurotologist says he doesn't believe I have MD, but doesn't know what I have (yet I have the symptoms) while my EN&T says yes I have MD. I've done some searching on my own and will run these other similar symptom issue's by someone and see what to do. Good luck everyone.

  6. I began having dizziness I couldn't figure out several months before my first vertigo/nausea attack. I would find my way around at work by placing one hand on the wall... that was the only way I could walk in a straight line.

    The first full-fledged attack was when I was on my way home from work one evening. I felt queasy on the train as I left Manhattan, and I remember thinking I might not get home before I had to vomit. At the train station, I got on one of the little buses we have that shuttle people around town from the trains, and the nausea got worse. I was getting pretty desperate at this point.

    When I reached my house, I stumbled up the steps to the door, and realized I had run out of time. I rang the doorbell so my husband could come out and help me, and I began to throw up into the snow on the side of the front steps. My husband came to the door and had to help me up the stairs to the bathroom on the second floor, where I stayed for an hour or two. I needed to have a bowl to vomit in, because I was so dizzy I couldn't even kneel in front of the toilet.

    My second attack came at Christmas, when the family was at my mother's house. I had been dizzy for several days, and the tinnitus in my left ear was getting worse and worse. I ran to the bathroom at one point and threw up, and the tinnitus and dizziness cleared up.

    My third attack, the worst I ever had, was also at my mother's house. It lasted for nearly five hours, and the nystagmus was so bad that it appeared to me as if the trees outside the window were jumping up and down violently. I felt as if the whole room was rocking so hard that I had to hold on to the arms of the chair to avoid falling on the floor. My husband held a bowl for me to throw up in while my mother kept getting damp cloths to wipe my face and water to rinse my mouth.

    By the time I had the third attack I had a diagnosis, but it was another year before I had my surgery. I remember so many attacks in that time it makes me feel awful now, just thinking about them.

  7. I'm very grateful for the Internet in so many ways (not just because it provides my livelihood). If I didn't have access, I'm sure I'd compensate somehow but I'd be so much further behind where I am not and much less informed. For example, if it wasn't for your site I wouldn't know about T-Bio which I still take. And without I'd not know about tests, therapies, alterntives, etc.

    My first attacks always occurred during sleeping hours. They began in earnest in the fall of 2008. I knew of MD because I'd had a case of idiopathic BPPV in 2001. You can't help but read about MD when reading about other, similar conditions. Even with this information I still put the spells down to something I ate. I think I really was in denial because I didn't want to have MD. As if what I want makes a difference with MD! By the time I had the worst attack I've yet experienced, I had already had smaller ones and also I had a diagnosis. I knew what it was but knowing can't prepare you adequately.

  8. For what it's worth, when I got my first symptoms, I thought for awhile that it must be some weird (but violent) virus. I had very long remissions in the beginning. It wasn't until I noticed hearing loss that I started Googling my symptoms and put two and two together and saw an ear/nose/throat specialist.

  9. That is interesting, DRainsdon. I think denial played a pretty big role for me in the early days of my MD experience. And you are absolutely right -- without the Internet, I would be totally lost in the morass of symptoms. Thank god for technological developments. :-)

  10. It was late at night, about 11pm and I was on the computer gaming with some friends when I started feeling "odd", we were near the end of our timed session so I stuck it out, doing my best to focus on the screen and not move my head at all. When we were done, I went upstairs and on the walk up started feeling nauseated making to the bathroom just in time. After about 10 minutes, I thought I was done, walked out and the dizziness hit full blast, I fell back into the bathroom on the floor, and spent the next hour watching the tile floor spin and continuing to vomit even when I couldn't. I remember lying there, not knowing what was happening, and actually wishing I would just die right was the most terrible thing I had ever experienced. I found that as long as I kept my eyes closed I didn't feel the need to throw up. After an hour I banged on the wall of the bathroom waking my wife who walked in and asked if I needed to go to the ER. She got dressed, my son found my shoes and put them on me and they both pulled me up with a trashcan in front of me for the ride to the hospital. It was 1am and thankfully no one was there so I went right in. They administered phenergan and antivert via IV and within half and hour I was feeling better. By policy they did an EEG and chest x-ray and found nothing. The doctor told me I had just experienced vertigo and wrote me scripts for the two meds to keep with me. I didn't fill them right away and two weeks later had the same attack and ER visit again. The doctor that night told me to see an ENT who then diagnosed me with Meniere's.

    My wife is the only person who can understand what these attacks do, seeing it first hand. The worst part is the lack of energy afterwards and the day or two it takes to get over it.

    It's certainly something I wish upon no one...and I feel for everyone who has it.

    Tim C

    1. My first major attack was about 3 years ago. Just woke up one morning to get ready for work. Stood up and hit the floor because the house turned upside down. I crawled back to bed and thought I got up too fast. I tried again to slowly get up w/ same results. The nausea and sweating was horrible. I crawled to the tub but ended back in bed soaking wet. My poor kids were terrified. After 4 hours of not being able to stand I had a panic attack which I thought was a heart attack. My sister told me to call 911. Embarassing to have all these men lifting my shirt and slapping montitors all over me. Neighbors watching them carry me off. I was only 36 so thinking I was having a heart attack scared me more than ever. After many heart test, I was told I had vertigo w/ no explanantion. Just learn to live w/ it. 3 years later a wonderful doctor sent me to an ENT who said I have bilateral MD and have already lost my low frequency hearing in both ears. Scared me to pieces that first attack. Unfortunately for me the antivert does not help. The valium at night does a little. About to schedule an appt to have the steroids shot behind my eardrums to see if it helps my symptoms. I would assume go deaf now if the other symptoms will go away. Affects my job and my whole life. I feel reclusive to the world in fear of an attack. I'm just venting because I am in the middle of an attack now that has been going for about a week now...sorry:D Need somewhere to let it out. Thanks Robin

    2. I am bilateral too...a mom too. I feel for you! Hang in there!! I'm glad you can vent to us....I didn't have this 17 years ago.
      If I could get rid of one symptom it would be the tinnitus. Vent anytime!!!

  11. I didn't really know what to think when I had my first attack. I was at work when it hit, and I thought I was just overheated and dehydrated. I left right before we opened(work at the Olive Garden), as I was in the bathroom throwing my guts up and half the dining room could hear me. So I left, took a cool bath, and drank down a liter of water and a liter of Gatorade. I was miserable the rest of the day, but felt fine the next day and did just fine during work. I had two days off following this. Then I get up one morning, to get ready to go to work, and I'm extremely dizzy. I sat down hoping the dizziness would pass, but instead of it passing it intensified and I was in the bathroom hugging the porcelain god.I went to a doc in the box and got diagnosed with strep throat. So I took antibiotics and things just got worse. My head would loll around, it felt 2 miles wide, I had intense pressure in my ears and behind my eyes. I thought I was dying. The doc in a box then diagnosed me with an inner ear infection. Nothing that was prescribed helped. I even went to the ER, and they wrote it off as a joke.

  12. Hi everyone!

    My first attack was 9 months after having brain surgery and it was at work. I was so scared that something went wrong with the clips they used on my anerysms. As much as the Neuro surgeon wants to say it had nothing to do with my surgery....I don't agree. Only in the last 1 1/2 did I have to horrible high pitched noise that is constant. I lost my home and my job of 35 years due to my attacks. I am still fighting long term disability since October. I really don't think that people or doctors know how devastating this disease is. I am hoping finding this website will make me feel like I am not telling stories. People look at me and look can you be sick!

    1. Have you tried gent or surgery for your attacks? Sounds like your attacks are really disrupting your life.

      I'm really sorry for your situation...brain surgery and now this.

      People just don't understand chronic, progressive disease and they can't see what is going on inside you. They should just keep their remarks to themselves.

    2. Thanks so much for your input. I don't have as many attacks since I moved from New York and stopped working. Really I have developed a phobia about going places by myself that are not familiar. Which makes my life a little difficult because I moved across the country and only know my brother and sister-in-law. I moved to a small town which really has helped. Also it is so beautiful where I am now.

      I must say the positive thing about this disease is that it got me out of a job that I hated and pushed me back to my family!

  13. Hang in there with the long-term disability fight. It can take up to two years, and you will have to apply, then ask for reconsideration, then seek judicial review, if it goes the way my claim did. But I did get it, and sooner than expected.

    Regarding the appearances of Meniere's, it's painfully true. I get that all the time: "Oh, well, but you LOOK great!" I don't think people know what to say, and it's confusing. Most of them seem to think that telling me I don't look sick will cheer me up, but in odd ways it actually makes it a little worse, because it's a way of marginalizing Meniere's patients... people just don't know what to do with us. I can't blame other people for finding it perplexing and not knowing how to respond, but it does make it a bit more lonely.

  14. Thanks so much for everyone's input. Peggy - the disability that you are talking about is social security disability? I haven't tried that yet. This is long term disability that I paid for at my job. Do you know if I can also start that process even though I am filing a claim with an insurance co? I am glad to hear that you got it. I sure don't know what I would have done without my brother.

    I don't know anyone with this disease so it's real nice to speak to everyone.

  15. Ah, I forgot about long-term disability. Yes, I was talking about SSD.

    When I applied for SSD with a lawyer, she said that I could also apply for other types of disability insurance, particularly since it can take a year to two years to get SSD.

    I only know two people in real life with Meniere's; the rest are all on blogs! My brother-in-law spent a horrible year having drop attacks, but then it went into the longest remission I've ever heard of. He has gone more than a decade with no vertigo! I also have a friend who had a labyrinthectomy and is now working and leading a mostly normal life.

    Every Meniere's story is different, I'm convinced. But it is very, very helpful to hear other people's stories. You never know what nugget of information is going to make a difference in your life.

    On an exciting note, I am leaving in a little while to see my audiologist. I'm having a new hearing test, which I'm sure will be bad for the left ear but mostly fine for the right ear. But then I'm having an evaluation for a new hearing aid, one that will pick up sound in my deaf ear and transmit it wirelessly to the good ear! Yep, my ears could be going Bluetooth today. :)

    Good luck, Jo Jo. I hope you find a good solution. It's tough working through the financial realities of what Meniere's does to your life, but you can come out on the other side in pretty good shape if you keep hammering away.

  16. My first attack was at a work function in the morning. The month or so leading up to it my left ear was full; felt pressure. Had been to the doctor and they didn't see anything. Was taking a decongestent trying to relive the pressure.

    But I was sitting at a table and looked from the projector screen down to my paper and just felt "off". Started to get very sick to my stomach. Walked to the back of the room. Was clammy. Co-workers commenting that I had went white as a sheet.

    I felt off balance. Sick to my stomach.

    The "real" scary part was when I went to lie down. I was looking straight up (worse when eyes were closed) and because I was focused on one spot I could see the room turning and turning so fast. It totally freaked me out.

    2 hrs later I was done. I was taken to a clinic and they diagnosed as BPPV.

    Took over a year later and many other episodes before the diagnosis of Meniere's.

    While I HATE this disease, knowing what it is and that I WILL get through the attack helps me continue to get through.

    Good luck to all who have it.

  17. My first attack was over 8 years ago. I was pregnant with my second child and at a bible study when I started feeling slightly off. Bible study ended I got up to leave and felt so dizzy I could not move. A friend helped me gather my two year old and she drove us to her house across the street. I immediately jumped out of the car and ran back across the street to throw up in the snow and not in my friends drive way. When I came back I laid on her couch for 2 hours or more trying not to move as the world spun around me.
    I did not have another attack for at least six years and did not really know there was anything wrong with me. I did occasionally feel like my left ear was plugged and at times this coincided with a sinus infection so I didn't pursue it. This past summer I began having the attacks again. Dizzy, couldn't walk a straight line, crawling to the bathroom to throw up, and my ear plugged up for months on end. I finally decided to get to the bottom of it and when an ENT traveled to our small town he said Meniers, and I was not too surprised since I did a lot of Internet searching before actually seeing a doctor. I had a balance and hearing test when I was symptom free and wouldn't you know it but a day later my ear plugs up and has been plugged for 5 months. I started a low salt diet had a month of random attacks and now I have been attack free since July. Unfortunately like I said my ear is plugged and I feel tired and nauseas a lot for no reason. Perhaps it's Meniers.

  18. It sounds like you have a rough introduction to Meniere's disease! It is amazing that you didn't have another attack for 6 years, but you can never deal about how often this disorder will strike.
    I hope the low salt diet helps you out and your ears open up.
    good luck and thanks for commenting