Onset at 19, remission, worse than ever at 40

Check out John of Ohio on this forum and maybe try his regimen. He has helped many people. Maybe he will see your post and get back to you. Theory is that it is a virus. Good luck.

 

My first attack was on February 15 and I was bad every day until mid-April, from then on I had 2-3 good days and 2-3 bad days until July, in July I was fine every day with some slight dizziness 20-30 seconds, in August I got a little worse and I had some severe dizziness every four days, September and October for now generally good. The buzzer has never gone and from what I know, it never will although at least it has gone down this last month.

With this I want to tell you that being bad for 15 days since it started is, unfortunately, quite normal and it may take months to really improve.

Taking SERC helped me, but it takes two months to work; but I know it helped me because when I felt better in May or June I tried to leave the SERC and in less than 48 hours I noticed that I was slowly getting more and more dizzy.

Dr. Gacek believes that most Menieres can be caused by a herpes virus and prescription antivirals, JOH's regimen is based on the same theory, but taking supplements like lysine, vitamins, etc. In the forum database (above) you can find more information about people who have taken JOH or Antivirals.

 

Hi Erin.

You mention in your post that you had round after round of antibiotics when you were 19 and first had symptoms. I am curious - what was your health like as a child, specifically did you have much exposure to antibiotics then for say ear infections or acne or anything like that? You may have to ask you parents as you may have been too young to remember.... Sounds like your doctor at the time may have been eager to throw antibiotics at anything so I just want to ask as it may change things a bit...

 

While consensus seem to be that the symptoms of Meniere's are due to a swelling in the inner ear with accompanying membrane rupturing - nobody knows why the swelling happens therefore there are many approaches on treatment and no one treatment is going to work for everyone.

For example, the John of Ohio Regimen is based on the theory that this is related to the Herpes virus. Have you ever had chicken pox or do you get cold sores? Then for sure you have the Herpes virus living somewhere inside you and that may be the cause or at least major contributing factor.

I asked about antibiotics. It is possible that the few antibiotics you had as a child may have contributed to your first episode (along with a genetic predisposition) but with all the antibiotics you had as an adult, I am very sure that you have Candida (yeast) overgrowth which some have found is the key to their Meniere's misery.... (As a woman, having yeast infections is a dead giveaway). But if nothing else it is going to adversely affect your immune system and overall health significantly (and therefore another possible contributing factor). You might want to get a book like the "Complete Candida Yeast Guidebook, 2nd Ed." or similar. I have an alternative medicine background and saw some incredible recoveries in people who had very challenging/unusual symptoms where their MDs gave up and didn't know what else to do... and after they addressed their Candida - they regained their health and their lives! You mention that you are on other medications too - your other health issues may improve as well by following a regimen that addresses Candida.

Then of course there are food allergies because everyone knows that they can cause swelling of mucous membranes through the body. Most people are actually allergic to wheat and dairy (the big two) and don't realize it because their symptoms are vague.

Not to mention what we all know on here.... there is overabundance of salt in diets these days. And sugar is also a killer. "Salt and sugar are death".

But know that all of the above can be true for someone at the same time and quite frankly, this is the case for many people (myself included). And when you consider the theory that the immune system is likely involved - well, if you are plagued by the first three issues (Herpes, Candida and allergies to the foods you are eating) - your immune system is plain overworked as it is so then yes, that comes into play too.

If you follow a "Candida Diet" it is going to eliminate dairy and wheat and sugar. So you're killing two birds with one stone there. Certain supplements are recommended with this (especially probiotics which make sure you take separate from the rest and away from food). But at the same time there is no reason not to add in items from the John of Ohio regimen (even if you don't believe you have the Herpes virus, there are supplements recommended there not directly related to Herpes which would increase blood flow to the brain, etc. which is worthwhile). You already are following a low sodium diet so that's good.

You also want to make sure in the midst of this that you are not suffering from any vitamin deficiency and are in fact getting optimal amounts of the basics. So look for a "High Potency" multi vitamin that per serving contains 50mgs of the B vitamins, iodine, Vitamin D, zinc, etc. Take the recommended dose of that to start (and take with a proper meal as I find if I don't I feel nauseated a few hours later). B vitamins are important for nerve health (and repeated bouts of Meniere's may damage nerve cells), while iodine is important for thyroid function (also implicated in Meniere's) and vitamin D & zinc are pretty much good for everything but certainly the immune system. As suggested by others in these forums, higher amounts of each of these may be beneficial but at least get a "good" amount and then you can fine tune if you need to go up.

There is also a good write up on the Life Extension site under "Science and Research" then "Health Protocols" and the article "Vertigo and Dizziness" with some additional suggestions such as glutathione.

Finally, do you have problems with your neck? Especially if you ever were in a car accident (whiplash) or had any other head/neck type injury... a visit to a chiropractor who specializes in upper cervical adjustments may be valuable. Maybe not the whole cause but may be one more contributing factor.

I know it's a lot but go through but this is a complicated disease so it stands to reason you might have to "unravel the onion" layer by layer.

I hope this proves helpful and gives you some hope!

 

Wow, great post Rubygirl. Antivirals and diet are the key for me to keep this monster in its cage.

 

Thanks Donamo!

I also wanted to add yet another piece in this puzzle and that is the role of hormones. Estrogen and dehydroepiandrosterone (DHEA) seem to have some protective action in the inner ear. They also both beneficial to the immune system. Well, guess what? Peak age of onset of Meniere's is around the same time as women are going through menopause (I believe that perimenopausal years are particularly bad which is when estrogen levels are declining precipitously). Now DHEA is an adrenal hormone and the adrenals are there to deal with stress. Stress is a known trigger for Meniere's. The output of this hormone naturally declines with age (thereby causing a reduction in its immune benefits) but if you have endured significant stress recently or have endured a lifetime of stress - your adrenals may be exhausted and your DHEA levels lower than they should be. Note that people often have their first bout of Meniere's after a very stressful time in their lives...which is interesting.

Lower estrogen and/or lower DHEA = lowered immune system = reduced ability to fend off the ill effects of the Herpes virus, allergens, Candida, etc. = the unchecked emergence of symptoms... (This for thyroid hormones too but I mentioned that above)

So all this to say - maybe have your doctor check your thyroid and DHEA levels also (with estrogen... women can assume this is in decline based on age and menstrual changes). If any are found to be low, there are options to boost them.

One more potential layer of the onion!

 

Not only to Herpes viruses, the regimen is designed to address several potential underlying factors: Viral inflammation, Ischemia (restricted circulation in the inner ear), and allergens.

From JOH regiment:

Viral Inflammation. The first principle involves the most likely involvement of viruses as a root cause of Meniere’s Disease (hereafter referred to as MM, Morbus Meniere, the Latin designation of the disease). European studies, and now American ones, too, have shown an almost universal presence of various herpes viruses in postmortem examinations of the inner ears of MM victims. The fact that MM is so often confined (initially at least) to one ear may be a result of locally infected inner ear tissues. Several herpes viruses are known to show this pattern of tissue and organ localization.

MM symptoms typically come and go, in varying severities, at varying periods. Periods of remission often spontaneously appears, followed by resumption of symptoms. This is exactly how many herpes virus infections occur, as with cold sores caused by herpes viruses.

Consequently, I presume that the cause of most MM cases is a viral infection of inner ear tissues that causes inflammation that then reduces circulation. The blood vessels in the inner ear are extremely small under normal conditions, and viral inflammation may reduce their effectiveness. Inflammation and reduced circulation results in the core hydrops (fluid accumulation) condition that leads to all sorts of inner ear abnormalities associated with MM. Suppression of the causative virus was a goal of the regimen.

Ischemia. The second principle is that much of the distress of Meniere’s disease is a result of restricted circulation through the inner ear. Several somewhat successful European MM treatments involve vasodilating compounds. Increased circulation through the inner ear can greatly reduce or eliminate MM symptoms. Increased inner ear blood flow was a goal of the regimen.

Allergens. Another related cause of MM symptoms is allergies. A number of MM sufferers have discovered that the elimination of gluten (a wheat protein) from their diets reduced or eliminated MM. Other allergens probably also cause some MM cases. MM may commonly result from the combined factors of both herpes viruses and food or environmental allergens.