Hi all: I just found this site and will be reading the previous post throughout the day. I wanted to share our situation to see if anyone has suggestions on any other steps we should be taking. My daughters symptoms began in August last year. She has a sinus infection and notice that her ear felt full. Her hearing seemed to improve but got worse by the fall. She then stated to get headaches, dizziness and ringing in the ears. She has had blood work, a MRI and several test (hearing and balance). We have been to her primary doctor, her ENT, and ENT at John's Hopkins and a pediatric neurologist (also at John's Hopkin's). Her symptoms (vertigo and headaches) began to subside around March. Her hearing slightly improved (word recognition) but she has constant tinnitus. The doctors diagnosed her with Meniere's even though she has some symptoms that are not typical (primarily age and headaches). She takes Triamterene daily and has been active. Last week the vertigo and headaches returned (not as bad) and she thought her hearing was worse. We had her tested on Friday and the left ear has not changed since the previous test but now she has hearing loss in the right ear. She is on steroids, she is getting a CT scan and we are headed back to a different ENT at John Hopkins. Bottom line is that her local ENT is baffled. I read the newbie thread and will be sharing it with her primary care doctor to hopefully try to find some answers. She has been healthy for most of her life other than when she was three and a strep throat developed into an abscess in her throat and she was hospitalized for four days. She also did not develop two of her front teeth and needed braces to move all of the teeth forward. Any help/suggestions/insight would be greatly appreciated. Shelly
Have you looked into MAV - Migraine Associated Vertigo? Many of the symptoms of MAV and menieres are the same. Also, has she been allergy tested? I have an allergy to mold and trees and my menieres is definitely worse at certain times of the year. Unfortunately there are so many different things that could be causing her symptoms and you have to be diligent in order to figure it out. I'm sure it is SO frustrating dealing with this at such a young age. There are a lot good links on this site that you should look into and it sounds as though you are at a reputable hospital! Good luck.
Get a second and third opinion. A lot of doctors spend less than 10 minutes looking at your file and then make a diagnosis. A lot of folks here have been diagnosed with one thing (e.g. Menieres), only to find out years later they had something else (e.g. MAV). The treatments for these two illnesses are vastly different! Check your diet. MAV can often be controlled with diet. If you think she might have MAV, read this book: https://www.amazon.com/Heal-Your-Headache-David-Buchholz/dp/0761125663/ref=sr_1_1?ie=UTF8&qid=1498501145&sr=8-1&keywords=heal+your+headache There are many other regimens that have worked for others, so be sure to read all the threads on this site. There is a wealth of information here that has been built up over 20 years of experience. Good luck. We're here to help.
The book mentioned above is a must ! Very informative and helpful. I do agree that you should look into MAV. Good luck !!
If going to Johns Hopkins you should try and see Dr. Della Santina one of the leading Menieres specialists in the world.
I never heard of MAV until today. She has an appointment with Dr. Della Santina scheduled for the end of the month. Thank you all for your help. I really appreciate it.
I just found out about a week ago that headaches and migraines aren't always the same thing. So when I'd see the concept of MAV, I'd just skip over it. Since I don't have headaches. Kinda sucks, because I have a VNS surgery scheduled for mid Sept, and I'm just now realizing my problem could be MAV related. I'm surprised my doctor never brought it up in 2 years. He did ask if I had headaches (maybe he even said migraines), and I said no, so that was the end of it. I guess I need to research MAVs now. Great, I'm so tired. Seems there's always a new curveball.
OK, I read this article on migraines without headache, and I think I don't have any kind of migraine. It talks about how non-head pain migraines can affect your vision and sensations in the rest of the body. I have none of that. So I think I'm off the MAV hook. Sorry I'll just shut up now. I just got a bit spooked is all. https://migraine.com/migraine-aura/migraine-aura-without-pain/
I'm not at all surprised your doctor didn't bring it up. Most doctors are clueless. MAV is statistically far more common than MM, and should be one of the first things they check into. And it is quite common without headaches or any other bodily symptoms. The fact that many doctors don't know this is shocking. The vertigo symptoms are often identical to MM, which is why many people don't see the distinction. Doctors, for the most part, simply don't care enough about you to spend the time researching this for you. They are interested in getting people in and out in record time these days. If you think you might have MAV, try the MAV diet for a couple of months. Keep a journal. I personally would learn a lot more about these diseases before having major surgery. Make a decision based on all the information.
Agree 100% Also Dr. RAUCH at Meet /Harvard is excellent Along with Dr. Douglass Mattox at Emory in Atlanta.
Check this study out -- https://www.facebook.com/MenieresNoMore/posts/1402936226491596?fref=gc&dti=1577831952495456&hc_location=ufi
Good luck. I agree on numerous opinions because these ear things are often not obvious even to specialists and specialists being humans have their preconceived ideas sometimes. I am partial to Dr Derebery at House Ear Clinic in LA if you should ever feel so frustrated that that kind of trip is under consideration. I like her because i think she gets the big picture and does not have tunnel vision (ie limited to only surgery or 'too bad, nothing we can do'). She restored my hearing with antivirals and allergy treatment after i had already consulted some well respected neurotologists in Pittsburgh.
Scrowds, I'm so sorry to hear these things are happening to your daughter. Is the hearing loss primarily in the low registers? That is typical of MM. My doctor has told me that recent findings are suggesting more connection between Migraines and MM.
As a 17 year old it wouldn't be totally out of the realm of possibilities. I was diagnosed with meniere's my senior year of high school with the exact same symptoms and the diagnosis has been correct.