My Child Just Diagnosed, help please with question

There are many things that help. There are also some things that make it worse. I suggest you and she keep detailed notes about what you are doing each day, what you are eating, how you feel and start to find those things, good and bad. Also get the book "Heal Your Headache" by Bucholz as a starting point.

We all know it's scary for her and you, we've been there. My very first success at control was with mega doses of vitamin C

 

Find a good otolaryngologist who works with Menieres.This is a serious disease ! Don't start any vitamins, supplements or other voodoo recommendations you may see or hear about on here until you talk to your doctor to see if diet or lifestyle may factor in . See if you can get her on Betahistine or other drug to control the vertigo, that is the most important first step. Nothing else matters if you can't get the vertigo under control . Good luck to you and God Bless.

 

How sad, awful news but there is hope. I take 24mg betahistine every 8 hours and the John of Ohio regimen. This combination has stopped all vertigo, dizziness, brain fog and aural fullness. I have bilateral MD and have lost most of my hearing so start treatment as soon as possible to reduce hearing loss. Reducing salt and caffeine may prove beneficial as well until the symptoms become manageable.

 

IMO, Menieres is just a label for a collection of symptoms of no known cause. A lot of people feel there is a viral cause, producing inflammation in the inner ear.

Your daughters symptoms sound much like mine were, almost exactly. For me, the ear fullness improved after a vertigo attack and then slowly started to build up again.

As you can see in my signature, mine is mostly controlled with anti-viral meds and diet. Please get the book I recommended, at least it gives you something you can do. Don't just wait for the Docs to come up with a magic fix, probably not going to happen quickly. Be your own doc.

Typically, a doctor will look for other causes, such as a cyst, but when they can't find any, they shrug and say you have Meniere's Disease.

 

Hi there, first of all I'm sorry to hear this news, it's one of those pieces of news that nobody wants to receive. I'm not going to pretend that this will be an easy journey no matter what the diagnosis, however, the previous posts are completely spot on in my opinion. You will likely receive all sorts of varied diagnosis simply because this is complex and Dr's knowledge is simply based on experience, text books, or in many cases they don't have any knowledge. The truth is, most Dr's can't even agree on the typical presentation. For example, I have all of the markers of the typical Meniere's diagnosis however, my last ENT diagnosed me with sudden sensorineural hearing loss. This was because I experienced a major hearing loss event on August 1st of this year. I also don't have rotational vertigo. My hearing loss initial presented in the high frequencies about 1.5 years ago. Is he correct? Maybe. I've had two other Dr's suggest that they think I have Meniere's.

All this to say, I feel your pain, and I feel your daughter's pain. I understand how can this can be just as painful for the family that is trying to help the patient - I know my wife is challenged just as much as I am. What I can say, is that I've chosen to treat this as Meniere's because I have very little to lose and everything to gain. What I've done:

- I keep a daily log of my symptoms across a few vectors - my perception of my hearing, tinnitus, dizziness/vertigo, aural fullness, and other ear noises (popping). I note what I eat because I've overhauled my diet, but occasionally I cheat (the holiday season is hard)
- Change in diet. I've almost eliminated caffeine. I eliminated dairy, gluten, and eggs. Low sodium diet. I made these changes on September 26th, after experience vertigo every week for two months. Subsequent to those changes I only had one episode in early October and none since, aside from some very mild dizziness for a few days.
- I started the JOH regimen about a month ago. My goal is to feel good, if any hearing comes back I will be over the moon. But if I can just stabilize and feel good, that's a win for me.
JOH (John of Ohio) Regimen for Meniere's Disease details

What I'm saying is there are things you can do and nothing will likely be a quick fix. I changed my diet because other than change of habit, money spent, and the willpower to do it, I have nothing to lose. In fact, I lost 15lbs and I sleep better - all positive things.

One day at a time. Trust me, I've done it all, and many on these forums have done the same. Formulate a plan, work with the plan. Track her progress - it's the only way to realize that WHEN positive progress is made it's happening. Why? Because there will be ups and downs. I have good and bad days, but on those bad days I feel like nothing has changed until I look back and realize that I HAVE improved.

 

Sorry this monster has come to call in your home. But there is hope. Many on here believe that there is a viral component to this illness and you can read up on the John of Ohio regimen on here to start. I think that is a necessary baseline for all of us on here.

But in addition, if you have the financial means, consider some testing. I recommend testing for: Candida, gluten sensitivity and food allergies (both IgE and IgG types... the IgG is more important for food). There is a lab in the States called Diagnostic Solutions that does a test called "GI Map" that covers Candida and Gluten as well as many other GI things and then they have a "IgG Explorer" food sensitivity test. They can point you to a doctor who offers these. There are other labs too but I know these as I did these myself and what an eye opener! But after changing my diet accordingly I've been doing awesome.

And don't load up on salty things (try to keep to the 2200 mg/day recommended daily intake).

Bottom line is that the immune system is involved with this disease. And if she is loaded up with Candida (if she got a number of courses of antibiotics in her life then probably), or she is sensitive to gluten and eating that day in day out, or eating any number of other foods that will trigger her immune system.... then it's going to go into overload and it's well known that any of these can cause vertigo and/or tinnitus and/or hearing loss (in addition to any immune contribution from the viruses which inhabit most of us). Which are the symptoms of Meniere's....

Hope this helps!

 

I'm a parent too and I totally understand the anguish you are experiencing. Sending love and support!

So if she has ever had a cold sore in her life - that's the herpes virus. If she has had Chicken Pox - that's the herpes virus (two different types). And both those happily live inside us forever. Then there are other ones like the Epstein Barr virus that also stays forever. I have all the above. No idea where I got the Epstein Barr one.... that came up on a blood test and was a surprise. I have read estimates that 80% of the population have some sort of "make a home" virus. Anyway, the John of Ohio regimen is a good start; read through that.

But it seems pretty unusual that this alone would cause the havoc that your daughter is experiencing at such a young age. Because the immune system keeps these things in check but as you get older and more stressed, etc. the immune system starts to decline/go haywire.

So I'm thinking there is probably something else going on that is further stressing her immune system. Food allergies/intolerances are one of them and in fact huge as "immune insults" can be happening at every meal, every snack. Gluten is the biggest one and if nothing else I would go gluten-free immediately. You can do more reading on that one and how it can cause tinnitus/vertigo. They can test for that (I had an IgA anti-gluten antibody test that came back off the chart).

In addition to that, Candida is a type of yeast that we all have that is normally found in the gut. But in a healthy proportion to the other types of bacteria that live there. But over the years with certain medications (antibiotics being the main one), certain diets, etc. it can become the dominant type of organism there and then it can cause a lot of issues. I worked in a clinic for years a few decades ago and saw some miraculous turnarounds for people suffering from Candida issues. It requires a diet change (low sugar mainly) and taking some supplements (to kill Candida and probiotics/good bacteria) to replenish the gut. This can also be tested for as a stool test. This can be a massive immune system overburden. And this also came back off the charts for me (lifetime of antibioctics).

But both of these can contribute to "Leaky gut" which is basically damage to the lining of the intestines and that can lead to many more food allergies/sensitivities. I had many appear on testing. I do better reading labels and avoiding those. Because again, an allergy or sensitivity is just the immune system reacting to a food, thinking that it is a bad bug it has to fight. So the more of these you can avoid, the better. I'm not saying I'm perfect with my diet by any stretch (far from it) but the more infomation you have, the more you can make the right choices and reduce the big offenders as much as possible. By the way, another member on these forums posted a study (I saw this independently too) that something like 100% of people with Meniere's had "Leaky Gut".... (again, nothing more than some inflammation/damage to the lining making it a bit more "open" to things being absorbed when they shouldn't).

In addition to the lab I mentioned, another lab offering similar testing is Genova Diagnostics (gdx.net). I did my food sensitivity one there. They also have a "GI Effects" one that seems similar to the GI Map one.

Oh, and you may want to have a chiropractor check out her neck for anything there.

Finally make sure she is on a good multivitamin. It's amazing how certain nutritional deficiencies can lead to issues, even for minor minerals like manganese. She likely is low in Vitamin D and iron (most Teen girls are) and these are easy tests. B vitamin deficiencies can cause neurological issues too so go to a reputable vitamin store and get their advice on a suitable high potency multivitamin/mineral. Make sure it has iron though (as many don't).

Drink lots of water to flush out toxins - just general good health advice.

Don't get depressed - there is still much that can be done and these are all things that can put your daughter on the path to health. While none of us can guarantee this is going to fix the issue.... I am pretty sure that if any of the above are happening in the background - leaving this unchecked will only contribute. But my hope is she finds the answer here.

 

I am so sorry to hear about this, especially at such a young age. Understand that Meniere's disease is not a certain diagnosis, rather, it's a supposition when anything else they can test for having the same symptoms is negative. Sort of like, well, you don't have any of these other things we have tested for that can cause this, so it's probably Meniere's. That said, I would echo the earlier suggestion that you find an otolaryngologist, who is specialized in this condition and others that have the same symptoms. Regular ENTs tend to not be as specialized. What kind of testing has she had? has she had an MRI?

This site is a trove of information, but it's also easy to get overwhelmed reading everything here. This condition is not the same for everyone and what works for one, often times will not work for others. What I can say, though, is that everyone here knows what your daughter, you, your family, and her friends are going through. We are all happy to listen and offer suggestions so please don't hesitate to reach out.

At this time, you will need to advocate for her, learn all you can, and teach her to advocate for herself. Most important, find a medical professional who understands the condition and will work with you and listen if you feel you want to explore something you have learned here or somewhere else.

I understand the helplessness when something like this happens to your child--I have been through it and continue to go through it. As far as myself, I have had Meniere's for going on 18 years. I had a labyrinthectomy on the right side, which left me totally deaf in that ear, but thankfully got rid of the vertigo. I now have cochlear hydrops in my left ear and am losing my hearing there. Generally, there is no vertigo with cochlear hydrops so I'm a little confused by that diagnosis (I had endolymphatic hydrops in the right ear, which does cause vertigo). My point being, I am quite successful and have a happy home life. This condition doesn't prohibit success and happiness, but it may make them a bit more difficult to achieve--we play the cards we are dealt.

Tons more I could write, but don't want to overwhelm. Feel free to post here any time or PM--this is a great community!

Kevin