How to get properly diagnosed for Meniere's Disease?

Mark- what symptoms is she having and what kinds of treatments (medications etc...) is she undergoing for those symptoms?

And it is VERY clear how much love you have for your daughter and it is VERY touching and wonderful.

 

Her symptoms are:
Partial lose of hearing in one ear, heavy nose, ringing, vestibular problems. Like this morning she ran into a closet in her room.
The medicine she was taking was prednisone. Did not make any difference. But she was feeling very bad while she was taking it. So she dropped it.

 

Hi Mark and welcome to the forum. One of the many problems with Meniere's is that the symptoms are also the same for many other ailments. Since there is no test currently available to confirm MM the only option is to rule out everything else. Your daughter will likely be put through the ringer several times by several different doctors. It is a frustrating thing for her as well as her loved ones. Just hang in there, hold onto her tight and keep on being there. Eventually it will get better.
SherryC

 

All doctors she has seen so far agree that the problem is a demaged by some virus nerve. What I dont understand is why would a demaged nerve cause vestibular problems as well?

Here are the symptoms in her own words:
my ear rings really loudly and sometimes switches to a fan sound. there is some pressure when the ringing gets really bad like on an airplane.
i don't get dizzy at all but when i am walking, i swerve and don't walk straight. but it doesn't make me dizzy. and when it is dark and i cannot see, i cant stay straight at all. i will walk two feet and make a 90 degree angle when i meant to go straight, no direction at all if i dont see where i am going.

 

Sometimes the ringing in my right ear sounds like a washing machine, other times it's a high pitch ring. It always gets worse at night when I lie down. You could probably get 100 different descriptions from as many people. It seems that no two are exactly alike. I not only have MM but a Vascular problem as well. I've already seen three different doctors this week alone. Whether its viral, Nerve, Vascular or a Vestibular causing her troubles may take some time to determine. Just do your best to educate yourselves on the terms and conditions so that you both can make informed decisions about her health care.

 

Hi Mark,

In order for a person to walk a straight line, the brain has to issue a lot of signals to control the muscles so that a person does not fall down or veer like your daughter is doing.
The portion of the brain that does most of the processing is located in the brain stem region. It receives information from the eyes, vestibular organs, and proprioceptors and integrates the signals before deciding what muscles should be sent signals .When one of these is giving bad information, it causes the brain stem to issue erratic signals to the muscles, which can lead to unusual movements (teetering, swaying, veering …)

If your daughter has nerve damage in the vestibular organ or along the eighth cranial nerve, then there is a real chance that her brain stem is getting faulty balance information. This is not to say that nerve damage causes ear damage. It is better to think of nerve damage as being a broken wire in a telephone system: communication is disrupted.

The good news is that there is a good chance that your daughter’s brain will accommodate the new situation and eventually learn how to issue signals to her muscles so that she can walk straight and not feel dizzy. Vestibular therapy can really help her along the road of recovery.

If five doctors agree that she has had viral damage, then that is probably what happened. That’s better than having Meniere’s disease.

Joe

 

You say she discontinued the prednisone....sometimes that works like a miracle for me and sometimes it does not. I know these are frustrating answers, but it seems like a lot of patience will be needed to get to someone who can help, or at least take charge of her case so as to slowly go down the path of ruling out what helps and what doesn't. Stopping prednisone in the middle of a course can also make you feel bad, you have to withdraw from it slowly. I am not saying this is what happened to her. The only thing I could suggest is to call the doc who prescribed it, tell them it did not help, and then see what their next suggestion would be. Doctors who treat these symptoms are used to the sometimes they work/sometimes they don't routine. My doc has always had something else for me to try. Also, I have gotten up and slammed into things when my balance was off, but then it gets better for months at a time. That is always the promise of menieres.....you can wake up and the symptoms can be gone. Sometimes it seems it won't happen, but having the hope is something. Good luck, and keep perservering. One doc told me "he who yells the loudest gets seen first," this was a doc who became a good friend of mine and treated my colitis for over a decade. His message was, keep asking and pushing for help. Don't feel bad about it. That was something I had to overcome. Your daughter is so lucky to have such a great dad. Do you have a main doctor you can call? Lisa

 

Yes, her brain has been adjusting Ok, but the probem is the noise. It's ubearable.

 

Mark,

Welcome to the forum. I don't know if your daughter has Meniere's or not. She's not likely to get that diagnosis without suffering from rotational vertigo. The thing is, you don't want it to be Meniere's. There is no cure for Meniere's. And the treatments for Meniere's don't help the ringing! If it is nerve damage do to a virus, why aren't they giving her an anti-viral medicene? That's a question I would ask the doctors.

Even if it is viral damage a neruotologist can diagnos and confirm the nerve damage due to virus or what ever she actually has. Make sure to take all her previous test results. Most insurance companies won't pay for the same test over again if it's been only so many months unless the doc can justify it (like they forgot to do blank). Also, ask about Vestibular Rehab Therapy it's physical therapy for the balance system. It can really help, but make sure she knows she will likely feel worse before she feels better. It will help her to adjust faster to the new balance signals coming from her bad ear. It doesn't matter what the diagnosis, she could probably benifit from therapy.

It might help for your daughter to start a symptom journal.

Record:
When you eat
What you eat
What meds you take
When you take the meds
Your symptoms and changes thru the day (times)
Stress levels
Menstruation

Food allergies are a fairly common trigger for MM especially gluten (wheat & other grains) and dairy. If your symptoms usually get worse after eating the same type of meal then you can try eliminating that food from your diet. If you eliminate an allergen it should give you some relief with in a week or two at the most.

Common triggers:
Sodium
MSG
Stress
Fatigue
Wheat
Dairy

Less common but reported triggers:
Nicotine
Seasonal allergies
Hormones
Alcohol
Caffeine
Other inhalant allergies
Other food allergies
Weather

Good luck, Tracy

 

If we only could reduce the noise. It makes her crazy. :'(

 

Mark-

The body usually does learn to adjust to the tinnitus (noise)-- it just takes time. It really can be frustrating and drive one crazy.... but after awhile, it just becomes part of what you get used to. This isn't the best comparison-- but I can remember (before Menieres)- we got a very large aquarium and there was a constant sound of moving water. For awhile- I just couldn't sleep, it was too noisy and I wasn't used to it..... but then I adjusted to it and didn't even notice the noise. It does just take time for one to adjust to something that they aren't used to hearing.
There are some things that do help as far as masking the noise, some people find that putting on soft music helps, others find that turning on a fan helps also..... it is different from person to person.

Dianna

 

Hi Mark,

Dianna (NurseMom) has given some great ideas to help with the tinnitus your daughter is experiencing. If a fan or soft music doesn't do the trick though you can also look into TRT - Tinnitus (and Hyperacusis) Retraining Therapy. I've gone this route and by coincidence, just picked up my devices an hour ago. My issue is not so much with the tinnitus...that one I can ignore on the most part....but the hyperacusis (noise intolerance) has been driving me around the bend. The concept behind TRT is small white noise generators that look like hearing aids and are used to retrain the brain into ignoring the tinnitus. Some people apparently experience relief almost right away but on average, the white noise generators are used for approximately 1-2 years and are worn 8-14 hours a day.

Here's some info on TRT in case you're interested...

http://www.chs.ca/info/vibes/2000/winter/tinnitus.html

Amethyst

 

How can my daughter get TRT? Is it neurotologist who decides if she needs one?

 

I can only speak to how it worked for me (I'm in Canada and I'm guessing you're in the U.S.) - - - my ENT had to make a referral to my local TRT clinic (3 1/2 hrs away) in order to start the process. There I had a thorough audiogram/workup done by an audiologist trained in TRT. A report was prepared by the clinic that I then sent to my insurance company - they're paying a portion of the expense ($1000 of $3000). The assessment only cost $50 and provided me with the information to make my decision.

With a little luck, you should be able to find a clinic in your area by googling TRT and your city or state. If not, I've also heard that in the U.S. a similar product called "Neuromonics" is commonly being used. Here's a link on it - unfortunately I can't remember who but at least one recent forum member has used this method with good results.

http://www.tinnitusandhearing.com/

Amethyst

 

Mark, it doesn't sound like Meniere's to me. The best thing you could do is find her a good neurotologist or oto-neurologist ASAP. Don't waste your time with the ENT. They don't have the neurology background she needs. I can't recall if you said your daughter has had an MRI or not but that is also a crucial test. It takes time and patience to properly diagnose a balance disorder. It also takes the patient forming a collaborative relationship with a doctor who is open to exploring different options. Personally, I would not be satisfied with a diagnosis of destruction of the nerve due to a virus. My experience is that doctors like to fall back on "virus" when they don't know the actual cause. I developed tinnitus when I was 22 and the doctor told me it was labyrinthitus (a virus) and to get used to it. Turns out, he was wrong. You need to rule out many, many other factors first before settling on a diagnosis. You're in the right place. But get a good neurotologist or oto-neurologist for your daughter.

 

http://www.dizziness-and-balance.com/disorders/menieres/menieres.html
Mark, If you haven't already been to this site try it. You will find that it's quite informative. Good luck.
SherryC

 

Mark, this is unconventional but I have posted about it before.....Vitamin B really helped my tinnitus (noise) tremendously. My doc confirmed that it helps some, not most. I used a dose that was over the counter from CVS, something like 1000-5000% of the RDA. Started lower, went higher. I did check with my doc (endocrinologist, I am also diabetic) first. He said in TOO high a dose it can cause nerve damage, but is considered pretty safe because the excess typically washes out. He okayed me. In 3 days my tinnitus was greatly diminished and I have never had it as bad again, after suffering for more than a few years. It pretty much disappeared. It helped me, maybe not most but something to try. Lisa

 

She has an appointment with neurotologist on Nov. 3. There was the earlist availability. The doctor is affiliated with the Northwestern University - known as a good medical organization.
Yes, she had MRI and ENT did not see anything wrong.
Dont know if we can try vitamin B. Is it pretty safe?

 

A normal vitamin B should be very safe. It was just the very high dose I moved up to that I checked out with my doc. This was not even available at CVS, I got it mail order. In general I think it's good to check everything with your doc, but it's just taking a vitamin. I am not a doctor, but I would say very safe. Lisa

 

My daugther has visited a heurotologist. This doctor has made better impression then others in regards of her problem. He has ordered a CT scan and he said he wasn't ready to have a complete opinion of what's wrong with my daughter. But he was saying that he tends to think that the problem is not with the nerve but rather is inside of a (dont remember a medical term) snell that has three compartments. And the middle one is a source of the problem. As of now my daugther feels better. The ringing is getting lower sometimes giving her some break. Thanks everyone for support.