Katyrae83: This is really, really important! I fear that your daughter has Meniere's Disease, although she is young to be have serious problems with it. YES--hormone levels can be a huge trigger for those with Meniere's. I've probably had Meniere's since I was quite young, but it wasn't diagnosed until I quit taking birth control pills (I.e., hormones) in my early 40s. I had had earlier episodes of classic Meniere's crisis at various times when I hadn't been taking hormones, but it had never been diagnosed. Soon after I quit taking hormones, I began to have crises within a day of the initial day of each period, and they grew worse and worse every month for eight, until I was on the floor, lying in a pool of vomit beneath the toilet--not a pretty sight at all! My primary doc, who often fished with me, feared the worst, prescribed strong birth control pills for three months as a trial. After the first month, I had no problems. At that point, Meniere's was primarily a balance/vertigo problem with hearing secondary. Due to my age (40s) it was believed that I could not take hormones, so my doc and I tried various supposedly "safe" HRT (hormone replacement therapy) over the next 3½ years, none of which prevented the 12-15 hour bouts of severe vertigo with continual vomiting. Great weight loss program, as I went from my normal 120 down to less than 90 at one point. At that time, the Meniere's was unilateral, i.e., only in my right ear, and I lost all useful hearing in that ear over a period of about six months.

Good news is that we also occasionally fished with an OB/Gyn from Houston, part of a huge practice. You are fortunate in that HRT is viewed in a much better light in Texas than it is in Oregon. That doc "ordered" me to go to my primary and demand a properly-balanced form of much stronger HRT. Fortunately, my primary doc agreed. Within a month, I quit having crises (had been having them as often as 3X a week). I was designing and editing a book about Meniere's Disease for VEDA (Vestibular Disorders Assn.) at the time, and the editor, also a "vestib," sent me instructions on how to do VRT (vestibular rehab) via e-mail. I was soon wading rivers, climbing ladders, hiking, leading a normal life. That was over 30 years ago, and I still do VRT every day. Over time, my so-called "good" ear had increasing age-related deafness, but I was able to get by with a combo of lip reading and guessing.

I started to go bilateral five years ago, but only began to have serious problems last May. This time, perhaps partly due to the daily VRT, the big problem is hearing. With Meniere's, it's not that you can't hear at all but that you hear far less during bad days and what you do hear is so distorted that you cannot understand words. You can see and even hear sound from someone speaking, but what they're saying is a total mystery. The business of fluctuation (good days vs. bad days), distortion, recruitment, and tinnitus ensure that you feel totally crazy sometimes, as well as royally frustrated because you can't understand now when you could a couple of hours ago. I now have constant tinnitus in both ears, different noise in each. I can't hear environmental sounds around me, like whether or not I've already turned the car on. I used to be a musician, but gave that up over 30 years ago, due to recruitment (where loud, sharp sounds simply slice through your head in a very painful way) and my inability to hear other instruments well enough to perform in an ensemble or orchestra.

THE way to get a hearing problem diagnosed is to go to a neurotologist. ENTs simply don't have the training. The one I saw early on simply patted my hand and said, "Now, now, dearie, just quit your silly job, stay home in bed, and take Valium." My "silly job" was sole support of my family at the time, with one kid in college, so that wasn't an option, even if I had considered his great advice for even one minute. The "dearie" meant I wanted to slap him upside the head! FWIW, valium and other drugs did zip to conquer the vertigo for me, only made the situation worse.

I'm certainly not a doc, but have studied Meniere's for almost 40 years. Although I immediately noticed that a large percentage of those who sought help from VEDA when I first found that organization were women in their 40s, most docs refuse to believe that there's a connection between hormones and bad days. Many of us with Meniere's believe that it actually is NOT a single disease but a collection of hard-to-diagnose diseases with different "triggers" that cause especial misery. The reason that your daughter had an MRI is because the one sure thing to omit is the possibility of an acoustic neuroma--the MRI proved that one is not present.

Please don't do anything that can't be reversed, like a CI, until you've learned what's actually wrong. I strongly suspect Meniere's, which is a very grim diagnosis because there is no cure, just ways to learn to live with it. Try to understand and be patient when she has bad days. Trust me, she's having a far worse time than you are! For example, my daughter and son-in-law came here for Christmas Eve and again early Christmas Day. It was a special time that I had looked forward to, but, unfortunately, I was having a really bad day and was relegated to sitting in the living room watching my husband, daughter, and son-in-law converse. Then, later that evening, some hearing returned. The next morning, I could hear somewhat (not a really good day but much better), so I was able to enjoy her visit for a couple of hours. However, later that day I had a mild vertigo crisis, meaning that my husband had leftovers for Christmas dinner and I spent the evening clutching a trash bag. Learning how to vomit in public in a "ladylike" manner is just one of the challenges!

You may contact me directly at through a private message. Good luck!

@katyrae83 This is interesting. I hope you can find an ENT or Otologist that can get to the bottom of your daughter's problem. I do not have knowledge on her condition but have to question the effectiveness of a cochlear implant, especially if the problem is neurological. Please keep us updated on her treatment.
Tony in Michigan