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I need help with Meniere's Disease questions and/or confirmations

Posted , 8 users are following.

kevin_90530
kevin_90530

Hello! I am a healthy 40 year old male who is a school principal. I was diagnosed with MD about 3 years ago. I have good times and bad. However, I had an episode about a month ago and things are worse than even on a daily basis. I have had an MRI to rule out any brain issues. My ENT said there is no more he can help me with and my symptoms are getting worse. I really just needed to be pointed in the right direction or told it is what it is. 

In addition to the normal MD symptoms such as hearing loss, ringing, nausea and dizziness (I take all the reaction meds, yes) ...When I am home for 3 days relaxing, all symptoms go away. However, whenever I drive I get head pressure behind my right eye, left temple and my teeth on the right side of my face hurt. As I do more throughout the day such as work, the pressure becomes worse and will not go away. I cannot turn my head fast or I will get sick. It seems like if I close my right eye, I can move my head more with less risk. The pressure is so bad at times I just want to crawl in bed. Bright lights kill me and after about an hour, I can catch a dizzy spell! The diziness is now very bad. Instead of the world going in a circle, I feel as if I am rolling in a ball. I make it through days but I am exhausted and don't really care about much in life right now because I am having a hard time with feeling good. People can tell that I am not myself. I believe I am having an eye/ear nerve connection issue but my ENT told me he cannot help me. I can do injections or have my nerves cut but boy that sounds scary and I don't know if it will help. So, why am I fine when I am not doing much but when my right eye takes in the sight of the everyday environment do I begin to feel horrible??? Please help me if you have ever expereinced something like this! I guess in short, I feel like someone punched me in right the side of the face as hard as they could first thing in the morning and I have to find a way to drive, work, sit in meeting and funcation as a normal adult. Thanks!!!!

 

0 likes, 14 replies

14 Replies

  • eleftherio33095
    eleftherio33095 kevin_90530

    Posted

    All things being equal, and as this is affecting your everyday life, you need to try intratympanic steroid injections which will go right to the problem.  This is now considered standard treatment for MD.

    Eleftherios S. Papathanasiou, PhD, FEAN

    Clinical Neurophysiologist

    Fellow of the European Academy of Neurology

    • eleftherio33095
      eleftherio33095 kevin_90530

      Posted

      Gentamicin, as a last resort, destroys the vestibular nerve on that side.  Steroid injections will not, but will try to reduce the excess fluid.  If the steroid injections do not work (they work about 45% of the time), then you may have to try the Gentamicin.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

    • kevin_90530
      kevin_90530 eleftherio33095

      Posted

      Thank you. That makes sense!

      Hello and thank you for your response. 

      Here is the one key thing that is very odd. If I drive with an eye patch on I get no head pressure. If I take it off the pressure goes away. Hence, if I cover my eye it seems to help. Would this be more neurogical than MD? Tonight, I was in a store with bright lights. After about 10 minutes of walking around I went dizzy. Had to sit down...then made it to my truck. Thoughts?

    • barry61472
      barry61472 kevin_90530

      Posted

      Kevin,

      One thing my surgeon told me, is that over 55% of the people who have Ménière's also have migraines. So they seem to come in tandem. It would not be unusual for you to have migraine symptoms and also have Meniere's disease. I would find an ENT surgeon who specializes in dealing with menieres/ migraines.

  • patricia69095
    patricia69095 kevin_90530

    Posted

    Is there any chance you can see a neurologist who specializes in migraine condtions?

    ?Your symptoms sound like a migraine attack to me. Vestibular migraines have symptoms like Meniere's and can also include migraine symptoms.

    • kevin_90530
      kevin_90530 patricia69095

      Posted

      Hello and thank you for your response. 

      Here is the one key thing that is very odd. If I drive with an eye patch on I get no head pressure. If I take it off the pressure goes away. Hence, if I cover my eye it seems to help. Would this be more neurogical than MD? Tonight, I was in a store with bright lights. After about 10 minutes of walking around I went dizzy. Had to sit down...then made it to my truck. Thoughts?

  • barry61472
    barry61472 kevin_90530

    Posted

    Kevin,

    You have it as bad as I did. I dealt with Ménière's for several decades. I took drugs, had steroid and gentamycin injections (multiple times in my right ear.) All helped for a little while. But then the symptoms came back with a vengeance. Finally, my ENT referred me to an ENT surgeon. I had a procedure known as a Labyrinthectomy on Dec 13. My surgeon said things would get a lot worse before they got better. Glad he told me that or I would have thought the surgery was a failure. Now, 4 1/2 months out, I'm finally stringing together several days in a row without any symptoms. I had forgotten what "normal" feels like. Now I have hope for total and complete healing sometime in the future.

    • kevin_90530
      kevin_90530 barry61472

      Posted

      My dizziness will go away. I am so used to the ringing it is just normal. But, I have these lingering symptoms of being unsteady and like I am in a fog. My head pressure is insane! I run from bright lights, florecent light (sp?) especially. I can stand under a florecent light and within 15 minutes, will literally fall over. It is crazy! I sold my Harley, I am skipping my ATV races and I am very worried about being out on my boat solo. When you are in charge of a school and half your day you  are trying just to hold it together, it messes up your skills. Ugh. Thank you for responding. 
  • Brookiana
    Brookiana kevin_90530

    Posted

    It sounds like stress related migraines. I'm the same. Pressure in my right temple and jaw.

    I'm also absolutely fine when off work (i work in school too).

    I am currently awaiting the results from an MRI but I will not give up trying to find the cause. I think you should definitely investigate the vestibular migraine route too, as I intend to do if the MRI doesn't show anything.

    It's very difficult to find an ENT who will persevere, ive been trying for a year now and might finally be getting somewhere with it!

    Good luck to you!

  • lana56327
    lana56327 kevin_90530

    Posted

    Hi, I have some similar symptoms (not as bad), after having meniere's for about 6 years.  My ENT suggested I go to an opthamologist, as the symptoms were so 'eye-related'.  I never did go, but I think the ear-eye connection is the root of the problem with vision related issues in Meniere's.  I was wearing tri-focal glasses, so switched to single vision contact lenses, and that helped.  My understanding is that the vestibular system isn't working correctly on the side of the Meniere's and that the brain is straining to sort things out.  This results in the trouble keeping the eyes steady during movement, discomfort in large stores, problems with driving in traffic and even walking in crowds.  If you can find an opthamologist or a neurologist who understands vestibular problems, maybe they can help.  Looking into the vestibular migraine maybe worth something too.  Hope you can find something that will help with these symptoms.  I don't think all ENTs really understand how debilitating Meniere's can be.

  • melissa04000
    melissa04000 kevin_90530

    Posted

    Doesn't sound like menieres, sounds like migraines exactly. I would see a diff Doctor. Sounds like same thing that happen to me.

  • SoCal.T
    SoCal.T kevin_90530

    Posted

    Hi Kevin...have you gotten anywhere with managing your symptoms? I too have issues with pressure in my car and it scares me to drive my kids around sometimes. I just turned 40 and was diagnosed over a year ago... it is a draining to have to fight n struggle just to make it through the day. I went out on a boat last week on the river and was nervous but did ok! I hope you have found some help here!!!
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