Newbie

Welcome Melinda!

I'm just a year into this myself. While I was diagnosed last year, I had been having strange episodes for years prior. Lots of good info to digest so please read historical threads.

K

 

Welcome Melinda although I hate that you have to deal with this! Use this site for information, education and most of all just to vent. We all understand!!

 

Welcome to the site. Many people find full relief through various methods and then move on with their lives. So don't be discouraged. Try everything

 

Hello Melinda. I'm also glad you found this site. It has helped me in ways I cant begin to recount. And as you see from my forum name...I am "FOREVERGRATEFUL" to have people here who are willing to listen and offer both encouragment and advice. It IS a lot to absorb, so be patient with yourself and dont be afraid to ask questions. We all "get it".

 

What Scott Tom said.

Most of all get under the care of an otolaryngologist (ENT) or otoneurologist that specializes in dizzy-balance disorders. Get a full work up which includes many tests (Hearing, Caloric ENG, MRI, Rotary Chair, VEMP, etc) All of which are required to diagnose MM (and to rule other stuff out) Once confirmed then sure try anything that won't hurt you. But get your care through an MD not on this board or via that friends aunt who thinks she has MM.

Here is a great article which has many links you can chase.

http://www.dizziness-and-balance.com/disorders/menieres/menieres.html (you probably have to copy and paste to your url line) If you have trouble with it just Google "Hain Menieres" and it will come up

Good luck

 

Readers are welcome to peruse this, Hain's site.

http://www.dizziness-and-balance.com/disorders/menieres/menieres.html

But, be aware, Hain clings to a last-century understanding and treatment protocol for Meniere's. He claims there is no evidence that antiherpetics (acyclovir, valacyclovir, etc.) can work and never prescribes them for his patients.





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Readers should note that a 2010 date is mentioned for the creation of the Hain website. A lot has happened since then, including hundreds upon hundreds of people getting successful symptom-suppressing treatment with proper dosages of antiherpetics. (I won't mention the recorded >80% success rate of my regimen.)

 

...but maybe helpful to give link to your (John of Ohio's) very helpful regimen: http://www.zoominternet.net/~kcshop/JOH.PDF

Welcome, Melinda! Good job finding this place. There's lots of helpful info and support to be found here.

 

JOH do note the update of his article was 4/'17. He keeps it current. No need to mention the success rate of your treatment since its just your data. No intelligent person will pay attention to that. No proper study at all. I have a better idea ...Why don't you stop trolling people who don't bow to your "regimen". Sure try it all. I fully support the JOH routine....if you feel better during that time....very awesome. But get under the care of a physican (duh)

For the newbies....again....get your care with a physician....not from folks on this board. Great place to find discussion and hear what others are doing. But beware those with the cure. (are that are defensive when you challenge!!) If someone has the cure then why does anyone have MM?

 

JOH is not trolling. He's been on this board for more than a decade helping people the best he knows how. It would be nice if there were more people like him.

 

Very cool. For sure going to a physican is a bad idea. Or to offer those in need a good article to read about the disease. Shame on me. We all need to eat oatmeal (oops I mean JOH) for a cure. I do think I saw the benefits of JOH in a recent medical publication so my bad. You guys must have a lot of time on your hands. Quick to defend. Suspicion raised further. I beat JOH with tenure since I have been on this board with several handles for over 15 years!! So I win I guess if that is the standard presented of who we should listen to. But probably better to listen to a doc vs anyone (including us) on this board. But here for comfort is cool. Not medical advice.

My Mama taught me to "never get in a fight with a ugly person because they have nothing to lose"....so I will go away. Awesome people here. Lots of folks looking for help and very vulnerable. Get a good doc folks.

Ill check back in when the time is good for me.

Peace to all.

PS if it waddles and quacks its a duck.

 

It would be helpful for those considering (or commenting on) my regimen, to carefully read my posting on this, here: http://www.zoominternet.net/~kcshop/JOH.PDF

Specifically, read and attend to this excerpted section:

Regimen Not From a Medical Professional
Please understand that I am a biologist, not a medical professional of any kind. The information I offer here is for general consideration, not a specific recommendation for the treatment of any disease. Those who elect to undertake this Meniere’s regimen are advised to first gain the approval of their personal medical professional. Most importantly, do not substitute any portion of this regimen for anything prescribed or recommended by a physician or other medical professional. Do not stop taking any prescribed drugs or stop any recommended diet without the prior professional advice of your physician.

_______

Importantly, a number of physicians have learned of the efficacy of my regimen from their patients, and have contacted me for further information, especially my 140-page PDF (only to physicians) telling the personally-provided accounts of how the regimen worked for (now) 277 users. Presently, 245 have reported successes, where Meniere's symptoms were either substantially or completely suppressed. Thirty-three accounts reveal regimen failures. This is an 88.13% success rate,

Now, of course, some (as above) will utterly disregard any of this information, as it doesn't derive from any legitimate double-blind clinical study published by a medical professional in a recognized medical journal.

For those who wish to limit their Meniere's treatments to such, good luck. I challenge anyone to find such a study on any of the current medical standard of care Meniere's treatments offered by physicians. None, that I know of, exist.

For those who, for whatever reasons, wish to discount the information that I provide, I have no animosity. Everyone is welcome and encouraged to do their own due diligence and go forward as they and their physicians might agree. I'm just delighted to read the wonderful accounts from dozens upon dozens of people who have emailed me, telling how their lives are now back to normal.

 

John of Ohio,
I'll attest to being #246. JOH ended my vertigo 100% and my dizzy spells have been eliminated except in certain positions which I have learned to avoid or prepare for. I have been on the regemin for 7 months.

 

How long does it take on that regimen(JOH)? To notice anything and relief that may help me decide.

 

That's awesome!

 

Time to relief on the regimen (as with other MM treatments) is highly variable, and almost always longer than wished or hoped for; usually in small increments over many weeks, or several months. A very few got significant relief within a week or two. Most notice symptoms starting to abate after a month or so. Herpes viruses can't be disabled until they attempt to replicate. Both the lysine of my regimen and the prescribed antiherpetic drugs (acyclovir, valacylovir, etc.) disable herpes viruses by chemically plugging reproduction of essential virus chemicals. If the virus is just sitting there, not trying to replicate, it can't be suppressed. But the inflammation in the inner ear that previous periods of activity (perhaps just a week or so earlier) can persist and create symptoms.

In both cases, with antiherpetics and with my regimen, it's important (well, critical) to stay with either (or both at the same time --- no conflict) for several months. I recall one or two cases where relief didn't come until the fifth or sixth month or so. Most would have given up before that (understood).

Equally or more important in both cases is to take enough antiherpetic or lysine. Half-measures just won't work. Scott Tom can advise on effective antiherpetic doses. My regimen write-up (http://www.zoominternet.net/~kcshop/JOH.pdf) tells how much and when to take the lysine.

With Meniere's, there are no quick fixes. And, in honesty, for a few (about one in eight), lysine or antiherpetics never work. The cause of those cases is probably not active herpes viruses in the inner ear or associated nerves.

 

My dizzy/vertigo spells cycled off after two weeks on JOH and never returned. That was last December. Not as fortunate with the pressure and howl/tinnitus. My good/bad cycles were approximately 4 weeks long until recently. I surmise JOH provided positive results as when I stated to cut back, symptoms started to return.

I just started valacyclovir this past week as Scott Tom kept after me. The dude is relentless. The sensation of pressure in my left ear has cycled off after less than a week. We will see if it returns. The tinnitus is still ever present with only brief periods of near silence.

Both JOH and AV's are what I consider low risk treatment options. I will stick with these and low sodium until my condition worsens. Or, find more effective solutions.

As others have advised, don't limit your options. Learn as much as you can, seek treatment and you will eventually start making choices based on what works and what does not. Most important is to never give up.

 

I support John and some other non-standard methods, as the standard medications that they have today for Meniere's disease is proven insufficient. As far as ENT's standard medication is concerned, all they can provide is mild / temporary alleviation or destructive methods to say the most. This medical community clearly mentions that there is no cure, which in turn means they can't provide any cure at this point. If we limit treatment to evidence-based medicines only, none is sufficient for Meniere's disease even though they are proven.

So I will put priority on how effective our non-standard treatments and/or regimens can be. I would recommend exercise regimen - neck/jaw exercises and walking exercises that may achieve relief in two months or so in typical case. Most of these are backed by clinical studies or expert advice at least. Look for dentists who articulate remedy to the Meniere's, hearing loss or tinnitus. Some of JOH supplements are verified with double-blind randomized trials - gingko extract for example.

https://drive.google.com/file/d/0B4smSaYBVJ9gaXN6aVJiRHRFUXM/view?usp=sharing

 

JOH, I'm full of gratitude for the information you gathered and the clear way you present it. It has helped me.