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MD is changing everything

Posted , 8 users are following.

belinda74824
belinda74824

My first sign/episode came a day after a 4 hour flight to Minnesota and the pressure in my head did not get better for 2 months. I have traveled very frequently for the past 9 years and have worked hard for my career the past 33 years. 

My first full blown vertigo occurred 4 months later, after attending an after hours meeting.  I was barely able to get home and was taken to the ER by a coworker. 

Four months later I had a very violent episode, and I finally went Primary Care DR. He reluctantly referred me to a ENT, really just wanting to send me home with more Valium. I had a second violent episode 7 days later and found an ENT to take me the next day.

I have had hearing tests, blood work but am just now going for my MRI next week. I have almost no hearing in left ear and relentless ringing (I refer to it as water boarding) I stay dizzy for wreaks at a time and then stay nauseated for weeks.  I have changed my diet to almost no sodium,  no real change. I am exhausted as I do not seem to benefit from sleep, I have had 3 good days in the last month.  

I am hoping that I will find some relief with some of the other RX recommendations I have read here as I wait for my next flight. 

I fear I will not make it to my retirement date, I struggle through the symptoms every day. 

1 like, 7 replies

7 Replies

  • chris48595
    chris48595 belinda74824

    Posted

    Oh Belinda, I feel for you! Are you getting a cat scan of your ear or your brain? I feel so bad for you! I’ve had 3 strokes and I think my vertigo, hearing loss is from the strokes. I have constant buzzing in my ears and also hear a air conditioner running . That came after my trip from Hawaii. I had vertigo and on for the last 2 years and last May just about every day til my stroke may 20 2017. 

    Im still having vertigo and go to a vertigo specialist. He can help with balance and he resets my crystals

    can also can sets the crystals in the right position. Unfortunately, I have inner ear vertigo and also from the brain. Today my hearing totally went where I could barely hear.

    ive just purchased a trial using hearing aids. They seem to help with the buzzing. I’ve found not only salt but alcohol and caffeine effects my vertigo. Last attack was 2 weeks ago and I wanted to die. Took a meclizine  and slept the rest of the day. I wish I knew what to tell you but it’s such a complicated disease. Please keep in touch, good luck.

    • belinda74824
      belinda74824 chris48595

      Posted

      I have had a ct scan and having an MRI with contrast and no contrast in a week. 
    • chris48595
      chris48595 belinda74824

      Posted

      My other thought after reading everyone’s comments to you is keep a log when you get a attack and what you were doing at that time. Then when you see your nueologist you can show them. Keep a resting blood pressure log too. Also, with direutics you can get dehydrated and also from any caffeine! Try to drink some Gatorade 2 everyday that helps. I notice when I get dehydrated an attack comes. Keep us posted! Chris
  • tanney
    tanney belinda74824

    Posted

    Belinda, are you sure you have Meniere's Disease and not one of the other dozen or so illnesses that affect the middle and inner ear?  Did your hearing test show that you have lost hearing in the low decibel range?  Whatever the cause of your problem is, you should consider seeing a neurotologist ( ENT that specializes in inner ear diseases) not a regular ENT.  A neurotologist will have you undergo a series of vestibular testing that will pinpoint your problem.  Most neurotologists are affiliated with University hospitals so you might want to contact the closest university for recommendation....or ask your ENT to recommend one.

    Now, assuming your diagnosis is in fact MD, there are several things/medicines you should consider using, such as:

    1.  very low sodium, no caffeine, no alcohol

    2.  diuretics....starting at 25mg/day and increasing to 50mg/day if necessary

    3.  intratympanic steroid injections into the middle/inner ear to reduce inflammation and fluid.

    4.  Betahistine.  This is a medicine that needs to be compounded (in the US) by a compounding pharmacy.  Usually the initial prescription is for 4mg/3x/day and increased to 16mg/3X/day (some folks need even a higher dose).  Betahistine is prescribed only for meniere's disease and is not covered by insurance in the US.  It is very effective in eliminating/controlling vertigo and often can decrease tinnitus.  It usually takes 3-4 weeks to be effective and probably will be only partially effective until you reach maintenance dose (16mg 3x/day). 

    If you practice diet restrictions (above), use the diuretic and take betahistine in the correct dosage it's very likely your symptoms will be controlled.  If however after all of above you still have uncontrolled vertigo then I would suggest you discuss Gentamycin injections with the neurotologist.  

    Good luck and keep us informed about your condition....we care.

     

    • belinda74824
      belinda74824 tanney

      Posted

      Thank you for your reply, I have now had my hearing tested twice and have significant loss, as I said the MRI is set for June 5th.  I have been on a low sodium diet since January, I am not a coffee drinker but do have a couple of diet sodas per day and and a couple of glasses of wine per week. My Blood Pressure med contains a diuretic and am told that is enough, but purchased addition last weekend out of frustration.  

      The ringing in my left ear is so loud, I have wondered why I never feel rested any more and if that is the cause. 

      I also read in the other discussions about a nexus to stress. I would like to better understand that, after this bad month I struggle to tolerate all symptoms while I continue to work.

      I will find a neurotolgist.

      Thank you!

  • john02577
    john02577 belinda74824

    Posted

    Hi Belinda I too have the same and worse symptoms as you but you only mention valium has nothing else been prescribed for you I myself have never been prescribed valium has any doctor suggested Predisolone steroid injections in the ear or more

    Life-changing operation where you lose total hearing in the affected ear...Johno

  • david2salsero
    david2salsero belinda74824

    Posted

    Hi Belinda. I’m so sorry to hear about your MD diagnosis. I can only reiterate what another person has said about diet and journaling. I would go on an elimination diet and ditch the alcohol. It’s hard, but if brings you relief it may be worth the sacrifice. Good luck and we’ll be thinking of you.
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