Hello, First, thank you to the facilitator and everyone who posts on this site. I would never have gotten the help I needed without you! And a special nod to JOH! July, 2022 - I had been swimming and thought that I had water in my ear because it felt so stuffed. In the middle of the night I started spinning and vomiting, so I went to the ER where I had an MRI, audiology tests, bloodwork, etc. They found nothing wrong with my brain and sent me home with Meclizine and to follow up with my GP and ENT. The ENT said it was Labyrinthitis and recommended vestibular PT, which I did for 6 weeks. At that point I had normal hearing and no tinnitus. October 3rd and October 10th, 2022 - Vertigo and vomiting for the first time since the original episode. November, 2022 - I decided to see a so-called "Meniere's Specialist" instead of my regular ENT (I also have sinus problems). Big mistake. He told me to watch my salt and said, "It's very mild". Well I feel this crap is a bit like being pregnant: you either are or you're not. How can he consider vertigo and vomiting, not to mention the fear of leaving the house in case you have an episode, "mild"? Never went back. However, the audiogram did show a moderate loss of hearing. Oh, and my favorite piece of advice from him: "Don't Google it." Well that's the only way I got any help because I discovered this site and felt like I could really benefit from all of your experiences! Thank you! I started taking Lysine and had my Vitamin D checked. It was 16 (severely deficient), so I started taking Vitamin D. The last time I had it checked it was 33. September, 2023 - I had a vertigo episode for the first time in almost a year! But it was pretty rough, so I decided to meet with Dr. Gacek via Tele-med and he prescribed Valacyclivor. I had another episode in December, 2023, but I didn't have another until September of this year, 2024, and it was not that bad. I had vertigo and threw up, but I was up and doing just fine an hour later, so I consider that pretty good! Another thing that really really helps is low dose Ativan (.5). My GP prescribed it because he said that he has several patients who benefited from a low dose when needed. It is the only thing that keeps me from constantly thinking that I'm going to have an episode when I'm out in the world trying to be a normal human being. I only take it when I am traveling or going to the theater or someplace where I have to sit for awhile. Here's a huge accomplishment - I went to the dentist! Twice! I felt like I had climbed Mt. Everest! But I don't think I could have done it without the Ativan. The NP at the GP's office has recommended that I try Sertraline, which I would like to look into. I see from this site that there are some success stories with it, so I was wondering if anyone has any opinions on it. Also, any recommendations for a doctor in the NYC area? Thank you, thank you all so much!
Hi.. I have Menieres in both ears. First in left during the early 80’s and second in right ear around 2010. The right ear was significantly worse. I had vertigo for hours( sometimes at least 5-8 hours) vomiting and wrenching so bad that I ended up inA-Fib in the ER. I have been dizzy free since 2012 but have a pretty bad hearing loss( wear 2 hearing aides) and tinnitus. The best thing I can suggest is to track what you are doing before your attacks. For me it was water retention the left ear and then allergies ( right ear) to every darn tree in my yard(and I live near a forested area). My meds are triamterene HCL daily. It’s diuretic that is helpful for fluid in the inner ear and also Ativan when I feel stress which could lead to an attack. I don’t know what part of NY you live but I found an amazing ENT/allergist at Geisinger Danville Pa. He is my hero. If you need contact info you can return message. Good luck!
Hello CG289, Thank you for your introduction! I believe that, despite our unique experiences, we can all relate to the challenges of living with this condition. While I generally feel good about my life, there are definitely moments that remind me of its difficulties. Recently, I've been experiencing some intense nausea when I wake up in the morning, although the vertigo is manageable at that time it brings me to the point of vomiting. I've also noticed that after a long day of listening at work, my hearing tends to deteriorate significantly. I’ve encountered ENT specialists in the past who seemed to think I was exaggerating my symptoms. My fluctuating hearing loss can range from 30 to 90 dB and can change within minutes. The social interactions can be quite exhausting, to the point where I feel completely drained, almost as if I’ve been sedated. Nevertheless, I’ve found ways to keep myself engaged and look forward to things in life. Thankfully, I received a diagnosis of bilateral Meniere from another ENT. Looking back, I realize I’m requiring more amplification (+30dB extra in one year) from my hearing aids, and I can’t help but wonder what the future holds. Wishing you all the best!
Thank you, ROx! I hope I'm not allergic to my Christmas tree! . Do you have to take the Ativan often? I feel like stress and anxiety were a large part of me having this in the first place. When I take Ativan, and sometimes I cut the .5 in half down to .25, which is what my GP called a "pediatric dose", it works. And it doesn't make me feel high or anything; it just makes me feel normal. Thanks for the doctor's name! I'm glad that you have someone you trust and like.
Thank you, Mr. Dutchie. I'm so sorry to hear that you're having nausea. We all know how much fun that is. I think it's interesting about your hearing changing. I have what's considered moderate loss in lower decibels, but some days I can hear a "twang" sound inside. Other days my hearing and head feel very clear. Yes, social interactions can be challenging. I like being around two or three people, but more than that and it can be frustrating. Fortunately, I work remotely and feel very lucky to be able to do so. Thanks for responding!