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JUST IN: New Meniere's Disease Database now open!

Discussion in 'Your Living Room' started by solari, Nov 19, 2018.

  1. solari

    solari MM.org Janitor Staff Member

    Admin Post
    Greets, folks.

    I've been working on setting up a new "database" on our new forums similar to what we've had in the past, but much improved.

    It's collection of valuable and informative posts here slotted into specific categories to make them easy to reference. We'll keep adding to it over time as we go. We'll also add more specific categories when there is enough data to warrant it.

    New to the database is a list of doctors and specialists referenced or recommended here on the forums by various members. If you have one you'd like to recommend, just go there and click the "Create Item" button in the Doctors category and fill out the form. You can also post reviews of them based on your experience.

    Most importantly... This database is made possible by your posts on our Meniere's Talk forums. Be sure to jump in here and share your own stories and experiences so that we all benefit from each other. And tell others about us!

    To access the database just click the Database tab at the top of the forums.

    Feel free to post any questions or comments. : )

    Thanks,
    Ray
     
    Last edited: Nov 19, 2018
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  2. solari

    solari MM.org Janitor Staff Member

    Admin Post
    PS. we've lost quite a bit of information from old forums getting shut down so I'll dig through some archives and see if I can find more.

    We do need more information and shared experiences from various treatments, especially conventional/traditional ones to flesh it out more in tandem with our alternative treatments category so please feel free to share by posting here!

    Ray
     
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  3. JulieZ

    JulieZ New Member

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    Nov 28, 2018
    I just found this forum yesterday. Thanks so much for putting all this information together. Can I suggest an addition to the "database"? I was hunting through the forum for people's experience with antiviral therapy and found some helpful comments. Could you add that as a category? I have just started a course of Valacyclovir and will report in on how goes.
     
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  4. solari

    solari MM.org Janitor Staff Member

    Admin Post
    Julie,

    I'm planning on adding it as a subcategory once we get enough of your sort of reports, so keep 'em coming!

    Look forward to your report; it's great to see how different things work for different folks.

    Best of luck!
    Ray
     
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  5. bewestbrook

    bewestbrook New Member

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    Jan 14, 2019
    JulieZ - Thank you for the suggestion and your updates as you go along. I tried the generic Valacyclovir and it had terrible side effects for me, though not for most people. Other threads have mentioned problems with various manufacturers. When you update, if you don't mind, could you include that information, too? I'm going to try and different antiviral and would also post in the DB.
     
  6. Joy Bannister

    Joy Bannister New Member

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  7. JulieZ

    JulieZ New Member

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    Nov 28, 2018
    Hi - So, I did try Valacyclovir, but I quickly had to stop taking it because it made me feel terrible. The brand I was taking was Amber.

    I have been taking Lysine for a couple of months now, and I have to say, while there has been no miracle cure - I'm doing much better. I track the Meniere's symptoms in a calendar I keep where:

    0 = No symptoms
    1 = No swimminess, minor post-nasal drip, no medication
    2 = Hint of swimminess or severe ear symptoms managed with Pseudophed
    3 = Minor attack
    4 = Medium attack
    5 = Severe attack

    I never get to 0, but in January I had 10 level 2 episodes, in February I had 2, and in March I had 1. I think the Lysine must be helping
     
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  8. bewestbrook

    bewestbrook New Member

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    Hello, There! - The Valacyclovir made me feel horrible, too. I'm trying a new one and will report on it. Just started last night. I've been religiously following the John of Ohio regimen with some success. After starting with Lysine, I found out more about how arginine and lysine "compete" for what I dimly understand to be a channel for whatever it is that happens next. While my understanding of the process is woefully incomplete, the take-away seems to be that the lysine will be most effective as an anti-viral when you also control for arginine, which is found in certain foods. There are a ton of lists out there, but I did find one from the FDA (I think). I'll find it and add it here. For me, watching that relationship definitely made a difference. After 2 very severe attacks, I started John of Ohio; had 1 much less severe attack; controlled for arginine and have had at worst my version of your #2 a couple of times - dizziness without vertigo, ramped-up tinnitus, nausea w/o vomiting. These attacks seem to come in a 6-week cycle, so at week 5, the lysine dose goes from 3000mg/day to 4500mg/day. That 6-week cycle is up this Wed/Thurs/Fri.

    Your numbering system is great. I am definitely stealing that!
     
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  9. Peter rabbit

    Peter rabbit Member

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    Can someone send me the information I need for applying to SSDI please?
     
  10. Inday

    Inday New Member

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    Oct 24, 2019
     
  11. Inday

    Inday New Member

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    Oct 24, 2019
    I am a new member and created a thread and I accidentally put it in the wrong forum light Kitchen. How do I move this to the general ffg pi rum Strictly Health? The name of the thread is New member in need if friends from Inday.
    Thx g ok r your help
     
  12. Crizzer

    Crizzer New Member

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    Oct 28, 2019
     
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