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Anyone with Meniere's Disease been prescribed Betahistine?
Ear, Nose & Throat (ENT) | Last Active: Jun 29 8:37am | Replies (217)Comment receiving replies
First, are you certain that you have Meniere's? About 80% of people diagnosed with Meniere's actually have some other inner ear disease. Regardless, you should keep a diary or calendar showing the kind of day you've had (good, so-so, bad, awful) and even the smallest thing you did that was different. Most Menierians have triggers that cause bad days and/or crises. Triggers can be stress, lack of sleep, inhaled allergens, food allergies (esp. dairy), lack of sleep, or low hormone levels (esp. if you're 40 or older). You can have more than one trigger, too. Over a period of weeks or months, you may be able to learn what your personal trigger is and do whatever you need to do to deal with it. I've had Meniere's for well over 50 years, but it only became a serious problem when I quit taking birth control pills (hormones) in my mid 40s. I spent 4 years working to find hormone replacement (HRT) considered safe for someone my age that kept the disease in control. During that time, I lost most hearing and balance function in my right ear. Over time, I was able to reduce the amount of HRT (you need less as you age) until I was taking a fraction of what I'd initially used. I did vestibular rehab every day and was able to function well, although age-related deafness increased in my left ear over time. Then, on May 24 at 6:45 p.m., my left ear quit hearing useful sound and roaring tinnitus moved in. So, I've just joined this group in the hopes of finding text-to-speech apps that will enable me to continue to live an active life at 77.
Replies to "First, are you certain that you have Meniere's? About 80% of people diagnosed with Meniere's actually..."
Hi!!!! Thanks for your reply!! it is so encouraging to see that I am not the only one suffering from this. Yes I am certain it is Menieres, they diagnosed me 35 years ago.....I am 64 today, but when I was in my late 30s the kill the nerve in the left ear to stop the violent vertigo attacks that happened 2 to 3 times a week. I had young children then, and I needed help desperately. This was done at Columbia Presbyterian in NYC. So....with that unfortunately they left me completely deaf in my left ear. I had a cochlear implant done a year and half ago. It is not working, I only hear sounds not words. But now the right ear which I had 60% of hearing goes up and down, there is days where I a can't hear my husband next to me, it is awful. I just had the worst menieres attack last week, had to be taking to the hospital.
I also have another autoimmune that causes sudden hearing loss. I am in the hands of Dr. Vambutas at LIJMC in Long Island and Dr. Wanna at Mt. Sinai. I had done Anakinra injections, and I almost ready to start them again, it depends on the hearing test I am getting today. If they don't work , then they want me to start on infusions of rituximab...........to try to bring the hearing back in the right ear.........it's a mess, really.
Life it's not easy.......living dizzy it's not easy..
I wish you the best!!!!!!!
God Bless
Maria
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Hi @joyces, I extend a welcome to you as well. Such great advice for @susyq213.
Joyce, after living with Menieres for over 50 years, you certainly have learned to modify and adjust to the triggers and changes. Now you're faced with a new challenge of roaring tinnitus. You may be interested in these discussions:
- Tinnitis https://connect.mayoclinic.org/discussion/tinnitis/
- Controlling Tinnitus: What works for you? https://connect.mayoclinic.org/discussion/tinnitus-control/
- Anxiety and disbelief over sudden hearing loss and tinnitus https://connect.mayoclinic.org/discussion/anxiety-and-disbelief-over-sudden-hearing-loss-and-tinnitus/
As yet, there isn't a discussion dedicated to text-to-speech apps. I'm sure many in the Hearing Loss group have recommendations and experiences to share. Would you mind starting a new discussion about this? Here’s how to start a new discussion:
1. Go to the Hearing Loss group homepage here: https://connect.mayoclinic.org/group/hearing-loss/
2. Click the START A DISCUSSION button.
3. Enter a title. Something like “Looking for suggestions for Text-to-Speech apps”
4. Write your message.
5. Click CREATE DISCUSSION