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New member and have several questions....

Discussion in 'Your Living Room' started by Rgv, Apr 9, 2019.

  1. Rgv

    Rgv Member

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    Hi all,
    So I was diagnosed with atypical Menieres recently.
    It's been a weird ride. I got a vertigo attack when I got back from aruba in Jan 2019. I was fine out there . Vertigo lasted about a day, then it morphed into regular dizziness, forehead pressure, sore eyeballs, flushed face, awful headaches tinnitus. I have been to the following:
    Internist, ENT, inner ear specialist , neurologist , emergency room
    Inner ear diagnosed it atypical Menieres and have lost hearing in right ear

    Also, had hearing test, balance test, ct scan All fairly normal except for right ear. I could not do the mri,,it was so loud I could not imagine the damage to my ears when over so I got out. It was louder than loud even with ear plugs

    This is my 4th month with it. Now I have just 2 of the above symptoms
    Constant dizziness and tinnitus is so bad right now my ears are a 10 and I feel like I'm going nuts. I do notice that even the little bit of stress causes it to ramp up,,,dizziness and tinnitus. I coach high school softball , but now that is becoming difficult to do because it's still anxiety /stress preparing for practices, games, strategizing etc. I may have to resign. My job is also stressful..transportation biz and that may have to go too.

    My question is how do you deal with the dizziness? Has anyone had the previous symptoms i had,,,forehead pressure, headaches, sore eyelids, headaches, and/or constant dizziness I have now ? I mean I'm talking to people and I'm swaying inside. I can't hide it to family and friends anymore. They know but not the real truth....its really bad. Also, the tinnitus, my friend has it from the music biz and he said hes learned to tune it out. I can not imagine tuning this out when just the tv is on, let alone totally quiet. Sleeping is even getting harder now. I have searched the internet 10x over and I'm done with doctors, they really have no definitive answers, so they say its Menieres.

    Meds I have tried:
    Meclizine..nothing
    Vitamin b5, b6 combo,, 2 weeks now nothing
    Ginko biloba,,,nothing
    Inner ear balance pills,,,nothing and not cheap on Amazon even though great reviews
    The only thing that has helped a bit is Mucinex D. I read that it dries up the water in the inner ear tubes..it helps. I do feel a bit better on it but still not close to what I was in January but once it ramps up, nothing helps. Low salt diet too and no relief.
    Sorry this is so long guys. My endocrinologist thinks I have auto immune disorder. I have type 1 diabetes at 12 yrs old , celiac, hypoythyroid, lactose intolerant, got mono 2 julys ago,,,all auto immune illnesss so makes sense. Any responses would be appreciated because I honestly don't know what to do anymore. Im 56 male
    Thnx
     
    Last edited: Apr 9, 2019
  2. Robert Wilson

    Robert Wilson Member

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    Tough stuff. I’m no doctor and fairly new to this (1 year).

    Have you looked at avoiding migraine related triggers? Some of that looks migraine-ish (MAV) to me — especially the head pressure and headaches. Ent told me I have MD, but a DPT with a vestibular specialty said he thinks it is more MAV for similar reasons. I think it may be both because I appear to have each set of triggers. Maybe check out migraine triggers and see if that helps.
     
    • Creative Creative x 1
  3. Rgv

    Rgv Member

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    I will,,,thank you for your reply
     
  4. Fisherman42

    Fisherman42 Active Member

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    Hi and welcome RGV, sorry you are feeling so bad but a lot of what you are feeling is common with this disease. Stress is a big player for me with this disease and many others when you are stressed it puts a tax on your autoimmune system which is working to fight the MM. Start by finding ways to relax and research, research, research this will help you deal with your disease. Look into the JOH (John of Ohio) regiment it has helped many here and can possibly relieve some of your symptoms. I have bad seasonal allergies and get allergy shots to help alleviate some of my symptoms that cause my MM to flare. I get a lot of head pressure and use nasal spray and sudafed to help my sinuses drain which also helps with the pressure. I also take Antivirals and they help keep things in check I actually was in remission for about 18 mos before my seasonal allergies threw me a knuckle ball. I'm slowly getting back on track now but this is a constant battle to deal with this. Don't give up. Find an ENT that will work with you and try some different avenues my ENT and OTO have been a God send. There is a wealth of knowledge here search these forums you will find answers. This where I came when everything went south for me and I have restored some semblance to my life because of it. You are stronger than you think you are, take baby steps let one answer take you to the next. Good Luck.
     
    • Like Like x 2
  5. Rgv

    Rgv Member

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    Thank you so much. Im at a very low point right now. Also, because i could not get through the mri, i have convinced myself that maybe this is something far more naferious like cancer, so again, the stress goes higher.
    I just can't believe something like this can make someone feel so awful.
    I will look into JOH suggestions. I can't stay like this, it's impossible.
    Thanks again
     
  6. Tony Wilson

    Tony Wilson Member

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    Well said fisherman, every new member (self included) needs to hear what you just laid out so simply.
     
  7. June-

    June- Well-Known Member

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    Have you tried antivirals such as acyclovir, valtrex or famvir? They dont work for all but for those they do work for, they are a Godsend. Good luck, stay hopeful. I rem mger when i had tinnitus so bad i thought it would make me crazy. Acyclovir took care of it. The answer isnt the same for everyone but most find an answer that works for them.
     
  8. Rgv

    Rgv Member

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    I am running it by my DR. I don't see why he wouldnt
    I just had bloodwork and herpes was in there so will see
    That's what the antivirals are for correct ?
     
  9. Joney

    Joney Active Member

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    RGV - I just posted this on a different thread, but thought it might be helpful for you.
    “I just got diagnosed with Meniere’s this week. I have had issues over the last ten years or so, on and off, and the ENT said he was confident with this diagnosis. He also said, what I’m sure what most of you were told, that there is no cure and that you can take care of the symptoms with various drugs. I kind of have been spiraling down into a depression thinking ‘this is now my life’. I’ve been reading everything I can get my hands on. I then called my nutritionist who gave me a ray of hope and wanted to pass it along to anyone who wants it. She said she has several clients who have been diagnosed with Meniere’s and has had good success.

    A low histamine diet for about a month.
    GinkoRose by Metagenics one capsule twice a day
    Natural Factors Quercetin one capsule twice a day
    Caster oil packs behind the effected ear(s). Soak clean colorless cloth in castor oil and place it behind ear. Plastic wrap over it and place a hot compress or heating pad on top. Lay on that side for 20-40 minutes every day for a week. This helps to draw out the fluids from the inner ear. Make sure it’s cold pressed, high quality oil. You can reuse these cloths but putting it in a sealed glass jar.

    I got online and ordered the supplements and oil and hope to start this regimen this week. I’ll let you all know how it works. I don’t want to think of taking medication and fearing the next oncoming attack for the rest of my life.”

    I don’t know if it will work for me, or not, but mt nutritionist was very sure it would as she has had success with this protocol.
     
  10. June-

    June- Well-Known Member

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    If it is immune related which probably most menieres are, you might get tested for allergies. Allergy shots also helped me a lot. You dont have to sneeze at flowers to have allergies.
     
  11. Rgv

    Rgv Member

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    Thank you and please keep me posted. I have fallen into a similar depression. ...one I had when I was 20...it frightens me.
     
  12. Rgv

    Rgv Member

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    Another interesting point. I never even thought about that, may have to be my next stop...Thank you
     
  13. Fisherman42

    Fisherman42 Active Member

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    Yes RGV that’s the theory behind the antivirals the virus is laying dormant or undetectable in your system.
     
    • Like Like x 1
  14. Jacqui

    Jacqui Member

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    You can get castor oil pack kits on amazon, seems to be the oil, the flannel and cleaning towelettes.
     
  15. Robert Wilson

    Robert Wilson Member

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    Please report back on this.

    Anyone ever heard of this?
     
  16. Joney

    Joney Active Member

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    Apparently you can take the Quercetin for up to twelve weeks safely.
     
  17. Fisherman42

    Fisherman42 Active Member

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    New to me.
     
  18. Rgv

    Rgv Member

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    Does anyone know if this herpes virus associated with Menieres is the same as herpes zoster oticus?
    They say you get a rash on outer part of your ear but what if you don't have that rash? Does it still fall in that category ?
    Thnx
     
  19. John of Ohio

    John of Ohio Active Member

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    The herpes viruses the infect and inflame the inner ear in Meniere's are not well characterized, if even identified in specific patients. The haziness of the matter prompts many physicians to simply dismiss herpes viruses as treatable causes of Meniere's (sadly, for their patients).

    --John of Ohio
     
    • Like Like x 1
  20. jaypr

    jaypr Member

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    Hi

    I haven't visited this site for a number of years, probably five or six. Anyway I had and potentially still have MAV
    I suffered in 2005 to 2008 and through this wonderful site and certain members and my own tenacity I became better. I used an elimination diet to discover my dietary and influential other triggers and bought the book "Heal your Headache by David Buchholz. The best £12 I have ever spent. I strongly urge you to get a copy or purchase the book. What have you got to lose. I am completely better (fingers crossed).
     

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