The majority of both general practitioners and otolaryngologists contend, just as they learned in medical school, that Meniere’s Disease is “idiopathic,” without any known or discoverable cause. That’s an out-of-date, no longer valid way of viewing the Meniere’s treatment problem. With that older perspective, the majority of American physicians must resort to the textbook “treatment” of putting the patient on a low-dose dietary salt regimen, along with a prescribed diuretic, a “water pill.” Even though the physician will claim that the cause of Meniere’s is idiopathic, he will still presume, in the absence of any other useful information, that the real cause of Meniere’s symptoms is too much salt in the diet, which causes the accumulation of fluids in the inner ear. Minimizing dietary salt is to help reduce the inner ear fluid build-up (the hydrops condition), and the diuretic is to cause the body to urinate away enough water so as to help dry out the inner’s excess water. For many, perhaps even most, this initial Meniere’s treatment has good results — at least for a period. But for many others, perhaps a majority, it brings only temporary or no results. The symptoms of Meniere’s disease continue to amplify and debilitate the patient. The unfortunate medical pronouncement by most physicians facing a patient who hasn’t positively responded to the low salt/diuretic approach is, “Learn to live with it. There’s nothing more we can do.” In the last century, such was the conundrum of Meniere’s treatment in the US. Some severe inner ear surgeries (slicing of the vestibular nerve between the brain and ear, or surgical extraction of the labyrinth, a labryinthectomy) were the only “final solutions” — ones with frequent concomitant difficulties, such as profound deafness, etc. Then, the disease often re-appeared in the untreated contralateral ear, where surgical interventions would have to be taken again. But fortunately, in the last decade or more, researchers in Europe particularly, and a few here in the US, have clinically proven that the root cause of the vast majority of Meniere’s cases is a herpes virus infection in the inner ear itself, or in adjacent nerves. Abundant clinical experience and histological and clinical studies now prove that inner ear herpes infections can be controlled and suppressed with appropriate drugs, bringing substantial or complete symptomatic relief. But most physicians are ignorant of such information, unfortunately. Consequently, described below is information that should be presented (properly and effectively) to physicians treating cases of Meniere’s. If you have Meniere’s (or vestibular neuritis, or BPPV), expend the effort to get the useful information below to your physician. For understandable reasons, most physicians a) do not believe a herpes virus causes Meniere’s (they weren’t taught that in med school, and no one has told them otherwise since), and b) once they learn of and believe herpes virus’s root cause of Meniere’s symptoms, they have no reliable information on how to prescribe modern antiherpetic drugs to treat this formerly-untreatable disease. The information below will help a Meniere’s patient get the useful info to his or her physician, so the effective antiherptic (herpes-drug) therapy can be prescribed. Here is the suggested protocol. 1. Download and Copy the Premier Medical Article on the Matter. Download the article from this site, http://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf Then, print it off — yes, all 17 pages. 2. Get the Article and a Note to the Doctor. BEFORE you have an appointment with your doctor, drop off the printed article to your doctor’s office, deliberately and specifically asking the nurse or office attendant to make sure the good doctor gets to read the article several days before your appointment. On the first page of the print-out, make a note to the doctor, asking him to specifically read the Clinical Series section starting on page 103, noting the drugs to prescribe, dosages, durations, etc. The following would be a suggested text, either on the document itself, or a clipped-on separate note or print-out: Dr X, I respectfully ask you to scrutinize the information in this recent journal article. The author, Dr. Richard Gracek of Boston, is extremely experienced in antiherpetic therapy of Meniere’s, as the article will reveal. Read closely the information on P. 103, for effective dosages and durations. Dr. Gracek gains an 88% to 90% complete relief of Meniere’s symptoms with his protocols, described in the paper. My thanks. That’s it. If the good physician chooses to neglect or reject your provided medical information, it’s time to find a more open-minded doctor who will treat with evidence-based approaches. For your information — and for the physician’s — here’s the cogent treatment text. I’ve taken the liberty to highlight crucial information: The antiviral treatment protocol for patients with recurrent vertigo is as indicated below. Discontinue all previous medical treatments; ensure that patients are cleared for normal renal and liver function; use acyclovir tabs 800 mg t.i.d. for 3 weeks and reexamine. If there is significant relief of vertigo, decrease to 800 mg b.i.d. for 3 weeks, then to 800 mg daily as a maintenance dose. If valacyclovir is selected (in those who fail to respond to acyclovir), use 1 g t.i.d. for 3 weeks with taper to b.i.d. for a further 3 weeks and then 1 g daily as a maintenance dose. The starting dose of acyclovir was given for a longer period (3 weeks) than that used for zoster because it was felt necessary to cross the blood-brain barrier to reach ganglion and satellite cells with virus. Most patients experienced relief from vertigo in the first 2 weeks but some required a longer period. The gradual lowering dose was then used to find the lowest level maintenance dose for a given patient. Most were controlled on a single dose daily but occasionally a patient required an adjustment to 1,200 mg of acyclovir or 1,500 mg of valacyclovir. These dosages may require adjustment in patients with impaired kidney or liver function. The follow-up period was as short as 3 years in the most recent patients and 8 years in the earliest patients in the series. Of 106 patients with VN (the earliest patients evaluated up to 8 years), 93 (88%) had complete relief of symptoms with oral acyclovir, 54 of 60 patients (90%) with MD [Meniere's disease] were relieved of vertigo, and 27 of 45 patients (60%) with posterior canal BPPV were relieved of symptoms. Between the use of antivirals and repositioning maneuvers (physical therapy), the number of chronically disabled patients who were candidates for ablation of posterior semicircular canal function (canal occlusion or singular neurectomy) was reduced significantly. As a result of these morphological and clinical observations, our approach to the patient with recurrent vertigo has been simplified. It goes without saying that the patient without recurrent balance symptoms needs no further treatment after a hearing test and MRI of the brain (assuming that these are normal). A Hallpike maneuver is included in the initial examination. Those patients with recurrent vertigo are offered a trial of oral acyclovir (or Valtrex) for 3 weeks. Examination at the 3-week period will determine the sensitivity of the particular NT virus to the antiviral. If there is no relief of vertigo with acyclovir or valacyclovir, treatment is followed by vestibular tests (videonystagmography and vestibular-evoked myogenic potential) to determine the responsible ear. If these results are abnormal chemical labyrinthotomy is offered. The patient is offered a choice between dexamethasone (12 mg/ml) or gentamycin (80 mg/2 ml), considering the risk of hearing loss (dexamethasone 0%; gentamycin usually negligible if used in a single small dose).
After posting, there is no provision for corrections. The cogent physician's name is "Dr. Richard Gacek," not "Gracek." My apologies. --John of Ohio
Thanks for your helpful advise. This is my first time on this site, so please forgive me if I mess up. I had 2 episodes in 2010 and 2011. Tests were done and it was determined that I had mieneres on the right side. This summer I began having episodes which I feel are associated with the left ear. My doctors approach was exactly as you said: low salt diet with a diuretic. After some research online I came across articles suggesting the herpes virus might be involved. I had some acyclovir around and started taking it. Right away I noticed improved hearing and my ear no longer felt plugged. I assumed my doctor would be resistant so I did the treatment on my own. I don't have enough acyclovir for maintenance so I will try following your advice and get her the information. Hopefully we can work together and get the disease under control.
The study says it relieves vertigo, so my question is how receptive will the doctors be in giving the antiviral if you're not experiencing vertigo? I have Meniere's and haven't had vertigo since July 2014 (knock on wood). I do get dizzy and my balance is off. My ear rings/buzzes/hisses and gets full too. I know it's just a matter of time before all heck breaks loose.
Physicians aren't ignorant on the interrelationship and connectedness of Meniere's symptoms. Inasmuch as vertigo is the most severe symptom of the disease, the use of antiherpetics to treat vertigo will also treat and suppress the lesser symptoms, which you mentioned you had. It's only a matter of time before the lesser symptoms escalate to full-blown vertigo, when the underlying and causative herpes virus achieves full strength and activity. Antiherpetic drugs can keep that from happening. Physicians don't tell their Meniere's patients to go home and don't come back again until they've had a full-blown vertigo event. Not a concern. --John of Ohio
i do not believe that the answer to menieres disease is an antiviral. I think it is far far far more complicated than any of us could ever imagine and realize. Should you try them, yes! but to assume that all/most/majority of menieres disease is caused by herpes virus i find downright naive and false. (By the way Evian water spelled backwards is Naive) It also is absolutely troublesome to come here and on a consistent basis have people spread the word that doctors and physicians are idiots and don't know what they are talking about and all they want to do is cut people open and steal their money is disgusting. People forget physicians, doctors, their kids, mothers, fathers, brothers and sisters also suffer from menieres disease as well. So to say they don't want a cure so they can cut you open and do expensive surgeries is a hard pill to swallow. Having lived my life with a doctor, most would have no idea how hard and dedicated they are to helping others and finding cures to all diseases is the reason many of them went into medicine in the first place. Always remember that these diseases are not immune from doctors and their families. Oncologist have kids that have cancer as well, Oto's have kids,friends, spouses family members that have menieres as well and so on............... I feel bad at all the doctor bashing that goes on on this forum because one day you are going to need one to save you or your loved ones life. Happy New Year to everybody.
BD I think people are frustrated when their doctor won't even give it a try. That is inexcusable to me, given its saftery record and one of the most studied drugs. I doubt anyone thinks the sole cause of MM symptoms is a virus, but the fact that so many of us on these forums get relief from them, it should not be dismissed. How sad it would be if a MM patient is refused by their Dr to try an AV and if they did take it, it would have given them symptom relief. We know its not a cure, we know its not the cause of MM but it is a cause for symptoms for many of us and to deny a patient a chance to try them and possibly get some relief from one of the most devastating, life altering symptoms as vertigo, is shameful.
Looking at all the differant AV's available on the market it can be a concern to make sure you have the right one. Acyclovir,Valacyclovir, Famciclovir, Valtrex, Valciclovir and Vaclovir is what I have been supplied that I understand is a generic for Valciclovir. I have been on the JOH regime for some 3 months and have had some improvment but I needed to try and get a bit more relief from these symtoms we all have. Serc is available in Australia and I have 3 x 16mg a day and it has helped me, last appintment with ENT I suppied JOH and Anti Viral information that he had not heard of but did take the information and could not see anything that was harmful and agreed to supply a script for the AV's Ive been on a 3 x1000mg dose a day for 4 weeks and I'm starting to have a few more full vertigo attacks as expected with being on AV's and understand getting worse before getting better. The informaton of Dr Gacek advise when you have significant relief of vertigo you can go down to the next dosage level. Should I be vertigo free for a number of weeks or when if there is a reduced number of attacks over a week.
Gary N, I would be super cautious about cutting back on your antivirals too soon. On the advice of two different ENTs in my area, I cut back after two months on Valtrex (from 3 to 2/day). Okay the first week, but then things started all over again. Now it has been 3 weeks back on 3/day and I am still not back to where I was. After one very nasty night of vertigo/vomiting, I have returned to having dizzy spells when and where I least expect them so I still can't plan when to shop, teach, etc. Wish I had not cut back until ALL dizziness was gone for a long period of time. I'm thinking six months would be much safer, from what I read on this forum. And during that period of time, we can make sure we are getting all the JOH regimen up to speed. Good luck to you!
Earwig, thanks What dosage were the valtrex? I know the feeling of the unexpected attacks and vomiting /vertigo its not good. Last visit to the ENT he also gave me a script for Zofran a anti vomiting wafer and these work well and with also using stematil during the start of the vertigo has stopped and reduced the length of the attack from a number of hours to only a couple. Worked well when I work in a office, could be worth a try for you. I will say on the dose I am on for a little longer, any other members stayed on long term ?
Gary the Valtrex tablets are 1 gm each. On Vicki's advice I have taken Valtrex rather than the generics the insurance people keep trying to give me, a different one every time. You have to have the doc specify the name brand in order to get it, because it costs the insurance company a lot more. As I understand it, the meds are the same in all these pills, but the fillers can vary a great deal and we can get reactions to the fillers. For dizziness, I quickly take OTC meclizine, as advised by a family doctor. If I grab it quick enough, I can usually avoid progressing into real vertigo. (When I'm already on the Valtrex.) Still, the dizziness sometimes lasts a couple hours. But before I cut back on the Valtrex I was having a week or more without dizziness. That makes you feel almost normal! Except for the fact that I have to avoid many foods/drinks that seem to set it off. But I guess we all have to figure out what our triggers are.
When I click on the link to the article given in the first post, I get "Web page not available". What's up? I'd like to be able to print it off and give it to my doctor.
I just tested the link and it works fine, its a pdf file http://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf if you are copying and pasting instead of clicking it make sure you do not copy and spaces before or after the link
I’m at the 3 week mark of being on Valacyclovir, first week was generic mylan, the last 2 weeks Brand name Valtrex, 1000 mg 3 times a day. I’ve gone from 2-3 vertigo per week to 2 weeks only hints of prevertigo, one full vertigo yesterday. I still have a lot of disequilibrium with housework, noise, turning, computer work, and anything bending my neck too long (knitting, iPhone,reading etc). I’m thinking of staying at this dose for awhile longer. Do I wait to taper once I’m (please God!) vertigo free for how long? Or until I’m vertigo free AND less disequilibrium? (I dare not hope for less tinnitus and better hearing - don’t want to get greedy - though wouldn’t that be lovely). And yes I’m on lysine, Vit C, lemon Bioflavonoids and other supplements to manage anxiety and migraine components. I’m also playing with low dose Full Spectrum hemp CBD oil. I’m open to all of your input and experience.
Anne, I received a 90-day supply of valacyclovir (brand name Northstar) for 1g X 3 per day. I stayed on the full dosage for 90 days and had the refill at the same level. I started 1g X 2 per day with that refill and stockpiled the remaining pills. I kept that 1g X 2 per day dosage for 15 months stockpiling the excess. Life was grand! No vertigo or disequillibrium. Tinnitus greatly reduced. Hearing improved in my bad ear to the point where it was tough telling the difference between my bad right ear and my really good left ear when using earbuds. Then I got careless. I just fell off the discipline of taking the pills and I got hit with a nasty vertigo attack and several weeks of dizziness and nausea. From counting the pills I calculated I had gone down to roughly 1g daily. Of course I went quickly back to 3g daily started feeling better and now I'm back on 2g daily. For me, 2g daily seems to be my maintenance dose. I don't think I will ever try 1g either purposely or accidentally again. Bottom line: It will take trial and error to arrive at your best maintenance dose. Also, I wouldn't even count the time spent on Mylan. Years ago I was doing well on A/Vs and then had a return of all the symptoms. I noticed my latest refill was from Mylan. I researched and saw many people suffering from Herpes viruses were up in arms about the ineffectiveness of the Mylan product. All the best health to you.
