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Out of Remission

Discussion in 'Your Living Room' started by Goodfuller, Aug 8, 2018.

  1. Goodfuller

    Goodfuller New Member

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    Aug 8, 2018
    This is my first post. Glad to find you!
    I was diagnosed with Menieres about 12 years ago. The vertigo and hearing loss leveled off after about 2 years and really I’ve had so few problems, I haven’t even thought of the word much. That has changed over the past month with my tinnitus moving to the forefront- louder, now constant and higher pitched as well as an episode of vertigo, extreme fatigue, etc.

    I’m interested in what I’ve read about antivirals helping sone patients. With no insurance or specialist currently overseeing my case, where would be a good place to start? Would a primary care doctor be able to help me with the antivirals for something like this? I am guessing I may have to take the info to them.

    Also, I know I am allergic to chromium. Chromium is in a lot of foods as it is an element in the soil where fruits, vegetables, nuts, etc grow. I have never been instructed to modify my diet, but only to be careful of topical exposure to chromium. I am questioning this allergy as a possible trigger for my Menieres. Any thoughts?
     
  2. nicmger

    nicmger Member

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    My personal belief is that if you have always had the allergy and didn't have issues for quite some time, unless you dramatically changed your diet recently I would personally not find a connection with diet. (Not a doctor just my personal belief)

    Antivirals have worked for many but will share from personal experience getting them prescribed for Meniere's is not the easiest. While some doctors agree that it has worked, most do not agree because there have not been clinical trials proving it. That said though any primary care can prescribe them.

    I know that for me stress and fatigue are two major triggers. With that I would wonder if something has changed in your routine causing more stress and/or causing you to burn the midnight oil and not get as much rest?

    Good luck.
     
  3. June-

    June- Well-Known Member

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    Talk to a family dr. Go armed with rhe rx you would like to try.
     
  4. Pupper

    Pupper Active Member

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    Hate stories like this. I'm sorry for you Goodfuller. Blasted creepy hateful disease!
     
  5. Clare

    Clare Active Member

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    Mar 31, 2018
  6. Goodfuller

    Goodfuller New Member

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    Aug 8, 2018
    Thank you ALL so much! <3

    Clare- I'll take a look at your link.
    June- I will do that!
    nicmger- I have had sinus problems for 2 months now and was just diagnosed with a bacterial sinus infection. I can also pinpoint one particular day about a month ago when I stayed awake working all night.. like saw the sun come up. Big mistake. My ears kicked into high gear and that was a defining moment when things changed.
     
  7. Goodfuller

    Goodfuller New Member

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    Aug 8, 2018
    Another thing I remembered! When I found out about my sinus infection, I asked them to check my Vitamin D because I suspected it was low. I've had it low before. It was at 5, so they prescribed 50,000 units/ week. I'm looking at what supplements I need.. and actually probably should go for a complete panel.
     
  8. nicmger

    nicmger Member

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    Sinus issues could definitely make an impact. Hopefully once the meds kick in you will feel better.
     
  9. Keith841

    Keith841 New Member

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    Aug 12, 2018
    Mine recently flared up as well. I came down with Meniers in 2012. Thought I was dying! It calmed down after about two years, but the tinnitus has never gone away. When I first had it I would wake up at 2:30am every night, with light vertigo, nausea and feeling fever ish, but I never had a fever. Two weeks ago I had more stress than usual and it suddenly started up again with a vengeance and I knew it when I started waking up feeling very sick right at 2:30 am again. Anytime I get a cough, sore throat or cold it flares up, then takes months to start calming down again. It's discouraging and depressing. Meniers saps the energy and enthusiasm out of you. From the reading Ive done I estimate I have a medium level case. I can not imagine having an extreme level case of Meniers.
     
  10. Keith841

    Keith841 New Member

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    Aug 12, 2018
    Mine recently flared up as well. I came down with Meniers in 2012. Thought I was dying! It calmed down after about two years, but the tinnitus has never gone away. When I first had it I would wake up at 2:30am every night, with light vertigo, nausea and feeling fever ish, but I never had a fever. Two weeks ago I had more stress than usual and it suddenly started up again with a vengeance and I knew it when I started waking up feeling very sick right at 2:30 am again. Anytime I get a cough, sore throat or cold it flares up, then takes months to start calming down again. It's discouraging and depressing. Meniers saps the energy and enthusiasm out of you. From the reading Ive done I estimate I have a medium level case. I can not imagine having an extreme level case of Meniers.
     
  11. cyfred

    cyfred New Member

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    Six years ago I got the name of Dr. Richard Gacek at the University of Massachusetts Medical Center in Worcester MA from the old Meniere's message board. I have been taking Acyclovir ever since (800mg/day) with great results. He is getting on in years but still seeing patients. I believe his son is also an ENT practicing somewhere in the south. Both are amenable to prescribing antivirals. My PCP has agreed to take over issuing the prescription. Other ENTs in MA won't do that because they don't "believe". If I were looking to figure out who would be amenable, perhaps if you give your geographic location, others could chime in with doctors they know. I will always be appreciative that people mentioned Dr. Gacek by name.
     
  12. No thanks

    No thanks Member

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    It was a bad head cold with a sinus infection along with stress, travel, and minimal sleep that catapulted mine from hydrops with minimal hearing loss to Menieres with vertigo and complete hearing loss in one ear. Some of the hearing has been restored since being on antivirals. The stress is a killer! Doing everything possible to take care of yourself is SO important! Good luck in getting the antivirals. There were several good suggestions as to how to approach that.
     
  13. Goodfuller

    Goodfuller New Member

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    Aug 8, 2018
    Thanks so much everyone!!
     

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