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Discussion in 'Your Living Room' started by Claybustr, Apr 24, 2018.

  1. Claybustr

    Claybustr New Member

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    Apr 24, 2018
    I just found this forum. Well, to be honest I just started tooling for a forum.

    My first attack was in 2003. Vertigo, cold sweats and the commuting. My friend and co-worker drove me to an immediate care and the doctor told me he thought it was just “pressure”. The event went away quickly and didn’t happen again for over 10 years.

    In 2016 the “stuff” started to get real. Waking up in the middle of the night with the room spinning and vomiting for hours. It seemed like it was a weekly occurrence. I talked with my doctor and she said it was a eustation tube dis-order. She told me I needed an MRI and I really felt like she had no clue so I eventually fired her without getting the MRI. I know what I have. But, I’m still carrying it with me every day. I ear Sudaphed like candy and have started trying Meclazine. The Mexlazine seems to reduce the “fullness” in my right ear and provides some relief for a few days. I feel like I’m normal again until the ringing starts getting louder and louder. I know what’s justReound the corner. Right now I am throwing nasal sprays, Sudaphed and Mexlazine at it with limited short term results.

    Yesterday I woke up feeling dizzy and a storm was moving in. I threw the kitchen sink
    At it and made it to mid-afternoon. The vertigo didn’t seem as bad but the vomiting was worse than it’s been in a few years. I have lost nearly all the hearing in my right ear and have constant tinitus. My wife and kids don’t understand what I’m going through and get scared when I have a bad attack. I’ve been fighting this on my own and I’m feeling alone. I’d love to at least find a doctor that understands.

    Well, that’s me.
     
  2. Nyynth

    Nyynth Member

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    Get a referral to a neurOTOlogist.

    Try JOH regimen.

    Try antivirals.

    Try immunotherapy.

    We're all in the same boat, man. It is frustrating trying to relate how much it impacts your life to people that haven't gone through it. I just read an article about middle-ear dystonia being another possible cause.
     
  3. rwj6001

    rwj6001 Member

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    Welcome to the site Claybustr, I'm sorry that you're here because it means that you're going through what many of us have been and/or are currently going through. The symptoms that you're experiencing sound like the same type of symptoms that many of us have experienced. WE KNOW your pain and WE KNOW your frustration.....if nothing else know that you are NOT ALONE in this and that there are things you can actively do that may help alleviate some of these issues.

    Read some of the posts from others about JOH and AVs, and about different types of doctors and treatments that have worked for them and I think you'll find some common ground, and perhaps the start of something that may improve your symptoms. If nothing else, you'll be more informed and that's good for you and your family.

    Good luck to you my friend, and please feel free to ask questions, or just vent about how much this sucks......we've all been there and are happy to give support and feedback to anyone new to this nightmare.
     
  4. mbgphoto79

    mbgphoto79 Member

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    Welcome. Glad you found us, but not glad you had to find us. I’m in a similar boat. I was having the extreme attacks fairly frequently and my tinnitus and pressure continued to ramp up when I finally found this board.

    I started taking anniviral meds in November and haven’t had a vomiting attack since. I have still had many vertigo attacks, but not as severe and much shorter. I also completely revamped my diet. I eat less than 1000mg of sodium per day, no caffeine, no alcohol, no wheat and I follow a low arginine/high lysine regimen. These changes seem to have helped smooth things out. I’m still seeking a more effective treatment though as the disease has left me succumbing to the effects of extreme anxiety.

    There are many, many things you can do to lessen your attacks. But I agree with Nyynth’s post and find a neurotologist, one who deals specifically with the inner ear and it’s relationship with the brain. ENT’s are not suited to effectively deal with MM in most cases.

    Above all, stay calm and good luck. Welcome.
     
  5. Clare

    Clare Active Member

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    Mar 31, 2018
    Hi Clabustr,

    I came here just a month ago, and you're in the right place. This disease can be terribly isolating because those who haven't dealt with it can't possibly understand the way these friendly folk can. We all look healthy on the outside (well, to some degree), and nobody can see the disaster of our inner ears, so what's the problem? The sudden vertigo and imbalance makes us want to stay home where it's safe, and maybe we can't drive anyway. It's scary because we're told Meniere's is progressive and there's no cure for the disease. And without having much hearing on your right side, you know how awkward it is to socialize, especially with people new to you. Really puts Quality of Life through the meat grinder.

    I'm still trying to figure out a lot about how the forum works, and how to access threads that give me stories over time that are relevant to the questions I'm facing. And it's taken me a while to understand some of the abbreviations used around here. We're so cosmopolitan that some of us call it Meniere's Disease (MD), some Morbus Meniere's (MM), and even Meniere's Syndrome (MS), which is easy to confuse with Multiple Sclerosis (also MS), which shares many symptoms.

    I'm just a newbie, but would like to welcome you too.

    Clare

    By the way, does anyone know if there is a difference between a neurotologist and an otoneurologist?
     
  6. mbgphoto79

    mbgphoto79 Member

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    Clare-

    From the web- An Otoneurologist is a neurologist with additional years of specialized training. They approach dizziness and balance disorders from the brain outward instead of from the ear in toward the brain (as in neurotologists).
     
  7. Clare

    Clare Active Member

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    Thanks, mgb.
     
  8. June-

    June- Well-Known Member

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    Neurotologist is an ent with further emphasis on inner ear/brain connection i think, the one most likely to see a lot of menieres compared to a regular ent. I am not sure if that is the same thing as an otoneurologist. Inhave not heard that term.
     
  9. Claybustr

    Claybustr New Member

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    Apr 24, 2018
    Thanks everyone. I have ordered everything to begin JOH and will start the regimen this week. Keeping my fingers crossed.
     
  10. marie

    marie Member

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    Clay,
    How are you feeling?
    I've been on an antiviral for about 13 months and rarely have vertigo and when I eat mostly whole grains and vegetables I feel well. When I eat processed foods with sodium I feel crummy but nothing like vertigo with vomitting.
    My best to all.
     
  11. Claybustr

    Claybustr New Member

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    Thanks for asking. I was experiencing dizziness daily after a few weeks on the JOH regimen. It was not as intense but there a lot. For the past week or so I have not had any sysmptms other than tinnitus and sense of "fullness" in my ear. I'm optimistic that this might be the beginning of some relief!
     
  12. balanga

    balanga New Member

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    May 17, 2018
    Hey Claybustr, I'm also new around here but just wanted to say hello and glad you're already feeling better from JOH! Hope things continue that way for you and keep us posted.
     
  13. marie

    marie Member

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    My Dr. told me to take my antiviral 3 times a day when stressed because I told him i felt dizzy daily. I've also had daily headaches but can't tie that to Meniere's.
    I've been continuing the low sodium diet but eating more bread and sweets. I'm sure getting back to eating more whole grains and vegetables will be good for my overall health.
    My best to all.
     

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