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Update on Cochlear Hydrops

Discussion in 'Your Living Room' started by meemil, Feb 7, 2020.

  1. meemil

    meemil New Member

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    Oct 27, 2019
    Hi,
    21 year old here with initially bilateral cochlear hydrops for little over year now. I got my first hearing loss episode few weeks after a nasty flu/something that left me a weird rash, weird tingling feelings all over the body and constant post nasal drip. All of those symptoms still exist to this day, including the hydrops. I was thinking of lyme but tests show that's not the case. (In fact, doctors don't have a clue about any of these symptoms)

    My pattern was very linear: hearing worsened for 1-3 hours and came back for once in a few weeks. In summer I had a remission of +4 months but it came back in the fall, and worse than ever. The episodes lasted more than 6 hours this time and had attacks more often but still no vertigo.

    I decided to follow some of the JOH, high dose C vitamin and occasionally Olive Leaf Extract. This gave me 11 weeks of remission but got a 2-3 hour long hearing loss episode in the more rarely affected ear last night. Should I still keep on going with the current plan, maybe dose up the OLE and take it regularly this time? I'd really hope this would help the rash too.

    Thanks in advance!
     
    Last edited: Feb 7, 2020
  2. Irishstu

    Irishstu Member

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    Apr 28, 2019
    Keep with the JOH, it can take up to 6 months to get max relief. There will always be setbacks but JOH has helped me live as normal a life as possible with lesser symptoms.
     
    • Like Like x 1
  3. meemil

    meemil New Member

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    Oct 27, 2019
    Interesting. I have a few questions if you don't mind. How long have you been on JOH so far? Are you on full regime and which do you think are the most important parts of it? Also, which stage were your symptoms before you started the regime?

    Thanks!
     
  4. wendy

    wendy Member

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    I would also dose up the OLE. You said you use it occasionally. I started the Lysine in May, ramped it up to 3000 MG in July, added Monolaurin and amped it up in October. When I added 1000 MG of C, my symptoms finally abated and I have been feeling more normal. I credit the higher dose of Monolaurin and adding the Vitamin C to the Lysine. I also swear by the lemon bioflavinoids.
     
  5. Kevinb003

    Kevinb003 Member

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    I have cochlear hydrops in my remaining ear after a laby in the other. The only thing that has helped is AVs, lysine, and OLE. I was doing great for a while so reduced AVs from 2400 mg to 1600 mg, quit lysine and quit OLE and symptoms came back. Won’t do that again. Have been back on all—AVs at 2400mg, lysine at 4000 mg and OLE at 2500 mg all daily and am getting very close to normal. Hope you get some relief soon. I wasn’t stricken until age 36...can’t even Imagine it at 21...hang in, friend. —Kevin
     
  6. meemil

    meemil New Member

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    Oct 27, 2019
    Wendy, great to hear you've been better. I'll definitely be more vigilant at taking the regime.

    Kevin, yeah it's nasty stuff especially being a young sound engineer/producer and you need a pristine hearing. Mine hasn't still permanently gone down, but am really fearing for that. :( Hoping that it's somehow linked to the rest infection symptoms I have, so getting that atleast dormant should help. And super glad that you have found relief so far!
     
  7. Onedayatatime

    Onedayatatime Active Member

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    Nov 22, 2016
    Welcome meemil. Heve you tried the easy stuff yet like low sodium or investigated an MAV connection? None of this costs much. Buchholz's "Heal your Headache" goes for under $10. I read it in 2 days. The JOH helped releive my symptoms initially. Eventually, my symptoms returned as the situation progressed. I still continue some of the JOH regimine as I see benefits outside my Menieres/MAV.
     
  8. meemil

    meemil New Member

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    Oct 27, 2019
    Hey there! How are you feeling now with the MAV treatment? Great to hear about that option, my mom has always had very bad migraines so I'll look into that for sure. I'm still going to try the antiviral/microbial approach as the rest of the infection symptoms are worrying as well.

    Oh and edit: sodium doesn't seem to affect me. When I've been eating heavy sodium, such as summer, I was in a remission.
     
    Last edited: Feb 8, 2020
  9. Onedayatatime

    Onedayatatime Active Member

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    Hi meemil. Migraines don't only manifest as headache pain. MAV manifests as vestibular disfunction such as vertigo. My Meneires/MAV was cyclical for years. Over time the frequency of attacks kept increasing. It was only during a flare that I found low sodium to help. When I was not in a flare, I could do as I pleased. Now that I am managing my diet for MAV and I still stick to a 1500mg per day goal for sodium, I find I can go cheat like I'm about to go out and do with a double bacon burger and a large fries. With MAV management, I have avoided vertigo for 6+ months. I hope you find what works for you. Watch for the cycles I speak of. As the disease progresses, the cycles eventually fade and the smptoms become somewhat continuous. At least, that was my progression.
     
  10. Kevinb003

    Kevinb003 Member

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    @meemil, I can relate. I’m a guitarist and had to stop performing live in 2005 due to the vertigo attacks. Kept busy writing and recording in home studio until hearing was so distorted and pitch shifting that I stopped that too. Laby fixed all of that but no stereo sound so pretty impossible to mix effectively. Remaining ear comes and goes...when it goes, I want to sell all of my gear, but when it comes, all I do is play! Hope you find an answer that is not this beast. Best—Kevin
     
  11. June-

    June- Well-Known Member

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    Antivirals and allergy shots brought my hearing back to normal both eliminating the distortion and restoring the low frequency loss. It also stopped the progression towards balance issues ie vertigo.
     
  12. Irishstu

    Irishstu Member

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    I have been on JOH for about 8 months. My symptoms were loud tinnitus, full ears, dizziness, pain in ears. I never had a full MM Diagnosis but my symptoms were very similar. I think the lysine and vincopetine are the most effective but that is just my opinion and i could be wrong.
     

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