LONG POST AHEAD: 41yo female diagnosed with unilateral Meniere’s at 35. It progressed to bilateral in 2020, and now I use hearing aids in both ears. Of late, my vertigo attacks are nonstop, several a day, sometimes just a great big episode that drags on. I’m going to see a specialist in Tampa (because I work in healthcare, I waited entirely too long to do so) after frustrating my ENT to the point where I’m sure their office is screening Sooo…I know each doctor is different, but what kinds of procedures have been done for any of you in this state? I see a lot of treatment for unilateral, but bilateral with hearing loss? Any comments will help, even just encouraging ones. I’m feeling pretty helpless at this point. medications: Meclizine, occasional lorazepam/benzodiazepines,Dyazide, tried valcyclovir years ago.
Hi Nicole, I´m new to this forum too. Welcome! I was diagnosed with unilateral Meniere´s in my mid 30´s. It too progressed into bilateral quickly there after. Been with hearing aids in both ears for quite some time now. I tend to write long posts so I´ll summarize and some or all of this you may be doing already. Find a good doc you have confidence in and who listens to you rather than thinks they know it all. I have found that Meniere´s has similarities but also is different for different people. I have found that having tubes put in has helped decrease the vertigo episodes by reducing some of the built up pressure from barometric pressure changes. (Purists will say that is subjective or anecdotal but I gotta go with what works for me.) Storm seasons (Early Spring and Early Fall) are the worst. Hot humid summer days are not so good either. Still get the imbalance or ¨full head¨ but it is a bit more manageable when the world isn´t spinning. I´ll take the little victories! Sea Bands the fabric elastic bands for the pressure points on the wrists has offered a bit of help too with the nausea. Keeping a journal. Food, weather, fluid intake, hearing, even things like clockwise and counter clockwise rotation of vertigo. I am convinced my issues are exacerbated by barometric pressure changes. I´ve kept a journal off and on through the years. Being a diabetic I have recently started noting blood glucose levels with relation to vertigo episodes. (I wish I had been a more consistent journalist over the years!) And in particular note these details pre and post episodes. It may help my kids or grand kids some day? Most important, keep a sense of humor about this and surround yourself with a good support network; friends, family, coworkers, and medical practitioners who will help you make it through the rough times, offer solid advice, hold your hand, give you a hug, dump out your emesis basin, or just say a prayer for you. Yes Meniere´s totally stinks but I have found that, with the right support to help when needed and laugh with you, there are good days are out there too. - All the best to you.
So much of this is true. It’s rainy season here in FL, and the barometric pressure wreaks havoc on my episodes. Also, Florida. And like any healthcare worker, I blame the moon phases for just about everything. Thanks for your kind words.
Many of us who have the bilateral were cursed with it from the beginning. The treatments are the same as for unilateral. I am in burnout which means that I rarely have vertigo.Hopefully you will get there too.
I have been bilateral from the get go about 22 years ago.With meds and low salt diet I keep the beast mostly at bay,but completly deaf now.Thank God for my cochlear implant.
My surgeon installed shunts in each ear to drain fluid. Steroid injections in my ears were very effective.
Greetings! I'm interested in how having shunts in both ears has affected you. I am also bilateral and looking at options. Thanks!
Nicole, what are your symptoms when the rain comes in Florida? Are you able to look at what the Barometric pressure is and see if a certain threshold affects you or is just rain? I just came to Mexico (close to the beach) and while it was sunny, I had no problems. Now has been raining for a couple of days, and my ringing in the ears is worst. Any feedback is appreciated.
Nicole, Greetings from East TN. My heart breaks for you as it does for anyone who has been diagnosed with Meniere's. I have late-stage, bilateral, true Meniere's and am in the rarest category of those who get worse opposed to those who find that sweet and coveted burn-out phase. I literally feel drunk 24/7. I have had endolymphatic sac decompression surgery on both ears. I can't wear hearing aids as I can't stand having anything in or on my hears anymore. I now have three different types of vertigo. My regular bouts last 24+ hours and I have one or two a month. I also have what I call mini bouts that last an hour and begin with vicious nausea followed by the worst vertigo. These can be caused by many things including what I call 'eye-multitasking'. I just lie on the couch and hang on for dear life till it is over. The other kind I call demi bouts and they last about five hours and are mostly caused by stress (my triggers are stress, hormones and weather). I take Meclizine and go to bed to sleep through it. For the regular bouts I am in bed for the duration and take Xanax and a Tylenol. It usually takes a week or more to fully recover from these. Determining your triggers is one of the first steps to moving forward and surviving. It usually takes keeping a daily journal and writing all your observations. You should also include observations from those closest to you as they may notice things you do not. Have frank conversations with your doctors and work with them to find the best way for you to cope with your symptoms. I have put a few videos on YouTube in my way to try to help those not only with Meniere's, but other chronic illnesses as well. Having a handful of those closest to you who are willing to learn and work with you is a major plus. YOU'VE GOT THIS GIRL!
My doctor is now suggesting shunts as well. Can you tell me about your experience. I’m scared to death to go this route, but dizziness almost daily and vertigo a couple of times a week