Going to see a Neurotologist tomorrow

Hi Ron! I have had the best results by seeing a Neurotologist in treating the disorder. Here is my personal take on them:

About Choosing a Doctor for Meniere's
When considering whether a Dr is right for you, here is what I've found:
For me, once they were SURE in my diagnosis of Meniere's Disease or in my case likely endolymphatic hydrops caused MD (which is diagnosed mostly a process of ruling out other things ) and because i am Unilateral (having the disease in only one ear).
Each of my Dr's presented treatment options to me as MY choice. They were all Meniere's experts and Neurotologists in Portland OR or Los Angeles, CA. They said:
1. Meniere's Disease is idiopathic, in other words we don't know what causes it for sure
2. MD has no cure and is progressive - in some patients it progresses very slowly, in others (as in my case) the vertigo is quite extensive and destroys the organ faster... it all depends.
3. It is all about YOUR quality of life. If you want to avoid procedures that may present a risk to your hearing, or required surgery, and only try medications (diuretics, etc...) or allergy shots or similar as your only treatment that is fine. If the vertigo is happening often enough and powerfully enough that you wish to start to destroy your ear on purpose - via gent injections or sac surgeries - even though there is risk to your hearing, then we are here for you and we will do them.
They left it up to ME to tell them when I was ready to climb the next step in things to try. Sure they gave me advice and had an opinion, but they knew my quality of life is what really mattered. Mostly they were there to EDUCATE me about my choices and what they represented.
That flexibility and willingness to listen is a hallmark of Neurotologists I've liked. The KNOW they can't cure it and they know it is often progressive, so they listen and help you grope for an answer for you and don't say absolute NO or YES necessarily, cause that doesn't always fit the nature of a chronic disorder.
Even if you are bilateral, you may have different steps or may avoid some things, but the basics of how the Dr treats you and educates you would be the same.

My Neurotologists whom I've liked very much are:

Dr. David Wilson, Portland OR (my first doc, mostly retired now)
http://www.wilsonearclinic.com/

Dr. Anh Nguyen-Huynh, Oregon Health Sciences University, Portland, OR (my current Dr.)
http://www.ohsu.edu/.../services/providers/index.cfm...

Dr. Jennifer Derebery (I can't recommend her enough!), House Ear Clinic, Los Angeles, CA
http://www.houseearclinic.com/derebery

I have a WHOLE bunch more info here on getting started on treating the disease and the treatments I've seen tried that may help inform your questions. If you are interested:
http://menieresandme.blogspot.com/2014/11/updated-introduction-to-menieres.html

 

Ask about antivirals. Many threads here supporting that it has helped many of us with our symptoms.

 

Well, I've had fully diagnosed and multi-symptomatic Meniere's since it first struck me in 1995. My ENT told me the same as the physicians above. No known cause. No known cure. It progresses. Learn to live with it.

Had presumed all of that to be true, today I'd be either fully deaf and utterly dysfunctional, or dead.

Instead, I'm living a life utterly absent any Meniere's symptoms other than the irreversible deafness in my left ear --- which happened before all of the following.

In short, I spent many days on the Internet collecting all the information I could in Meniere's and it's treatment, particularly in other parts of the world --- and found treatments that did work, at least to a degree.

Then, I spent two or three years experimenting on myself, trying versions of those foreign treatments to see if they had any personal efficacy. And yes, a number of them did.

And when I combined them, I got full symptomatic relief, which continues to this day. I've shared what I found here:
http://www.zoominternet.net/~kcshop/JOH.pdf

For any knowledgeable modern physician to claim that Meniere's is idiopathic and without any efficacious treatment is repugnant. There is now heaps of both research and clinical evidence that herpes virus infections in the inner ear or nerves is the cause of the vast majority of Meniere's cases; and proper administration of various antiherpetic drugs brings substantial relief. (Those drugs replicate, a bit faster, the herpes-suppressing function of the lysine in my regimen.)

If you've got a Meniere's-ignorant physician, do your homework here:
http://menieres.org/talk/index.php?board=3.0

If the fellow refuses to read the reports or refuses to prescribe antiherpetics, it's time to say good bye to the guy and go to another physician.

--John of Ohio

 

Thanks John,

I'd say my post is still the conventional wisdom among many Neurotologists as to how they present the disease to patients. However, I have had Dr's talk to me about herpes virus as one cause of the things that lead to Meniere's disease, likely in combination with other factors. None of them at the time were willing to make the full leap as you put it in your message, but were open to the idea. I'll try and add more info on that kind of thinking in the future when I respond.

It is my understanding, and it seems you will likely disagree, that the idiopathic part really springs from understanding the mechanism where and how and why these combination of factors (herpes, etc..) combine to cause endolymphatic hydrops and the like.

I am very familiar with your regimen and recommend it to people all the time for them to consider if they'd like to try it.

Are the drugs you are referring to as antiherpetic, primarily antivirals such as Acyclovir?

I need to add discussion of these treatments to my own posts as well as i think they should likely be tried as a baseline thing to try for treatment of Meniere's. If I had brought your regimen to any of the Dr's I list above, I think all would've encouraged me to try it if I wished. They would've likely been unwilling to offer any opinion as to its effectiveness but left it up to me to try. That is the main point I was trying to get across. An open minded Doc who will work on a treatment plan in coordination with the patient.

Dr. Derebery would advocate Allergy treatments, but not all Neurotologists do as an example.

Anyways, I'm glad you chimed in. You are a man of strong opinions who has done a lot of research and used your own body to test these ideas out. I have a lot of respect for your opinion, even when I do not completely share your full point of view on something. I'm glad you are here. I hope to spend some time on the boards again now. (I used to be on here a lot 10 years ago).

 

Yes, acyclovir is the most often prescribed antiherpetic. There are others, too.

Please, post Dr. Gacek's paper, and pull out and list the rates of efficacy, along with his recommended dosages.
They have profound results. Many dozens now have posted here significant or complete relief outcomes.

But a number of doctors don't or refuse to read Dr. Gacek's paper and refuse or fail to follow his specific prescription protocols --- which universally then results in failure. Instead, the good physicians simply prescribe acyclovir or another antiherpetic at some dosage unrelated to the effective treatment of Meniere's. Those doses are too weak and of too short duration. Failure. (Which then confirms the physician's first thought that Meniere's continues to be and always will be idiopathic, without "cure.")

--John of Ohio

 

How did it go, Ron?

 

John, here is a link to the paper:
http://www.ncbi.nlm.nih.gov/pubmed/18235200

The abstract:
Abstract
The concept that reactivation of latent neurotropic viruses (i.e. Herpesviridae group) in the vestibular ganglion is responsible for recurrent vestibulopathies is presented. A similar histopathologic degeneration of vestibular ganglion cells in vestibular neuronitis (VN), Ménière's disease and benign paroxysmal positional vertigo is presented to support this concept. The clinical response (relief of vertigo) to the administration of antiviral medication in these syndromes provides practical evidence of a viral neuropathy in patients with recurrent vertigo. Relief of vertigo after this treatment was 90% in VN, Ménière's disease and VN. The relief of positional vertigo (benign paroxysmal positional vertigo) was 66%

Here is a link to Dr. Timothy Hain's take on it from his page on causes of Meniere's (updated this last Sept).
Viruses as a cause of Meniere's disease
http://www.dizziness-and-balance.com/disorders/menieres/men_eti.html

-- Herpes virus (HSV) antibodies are found more commonly in Meniere's patients (Arnold and Niedermeyer, 1997). Viral DNA from herpes simplex in the vestibular ganglion of persons with Meniere's has been found by Vrabec (2003), but not by Welling, who also did not find CMV or varicella zoster (Welling et al, 1997). HSV antigen and HSV DNA are also found in the endolymphatic sac and epithelium of healthy people. There is some recent pathologic data supporting a viral cause (Gacek and Gacek, 2001). Linthicum has also recently reported that herpes simplex DNA is found in the endolymphatic sacs of 12 of 16 Meniere's cases, vs. 2 of 26 controls (Linthicum, 2001). Japanese researchers have reported finding varicella zoster in 7/10 endolymphatic sacs of persons with Meniere's, 4 with Epstein Barr Virus, and 1 with cytomegalovirus (Yazawa et al, 2003). Peculiarly, none of their cases had HSV1 or 2 found in the sac. Treatment studies using antivirals have rarely shown a positive effect, and we are dubious about the ones that report a response (e.g. Gacek, 2008). Our take on this is that these finding are interesting, somewhat puzzling in that there is some controversy, and need more investigation.
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I know you are firmly in the antiviral camp as it seems by your posts. I guess I personally do not have a fully informed opinion about either Dr's point of view and am reading more, but think it is certainly an area that I'd like see more treatments and studies tried.

I've posted both links as a way of providing well rounded information to those perusing this thread. As always I appreciate your very informative posts on the board. I am adding links to antiviral information to my own blog and info.