Hey everyone! I'm a newcomer to this exclusive group, and was recently diagnosed with Meniere's. A couple months ago, I was talking with my mom on the phone and noticed what I thought was a bad connection - the sound was tinny like a cheap old AM radio. I called her back and the issue persisted. I then switched the phone to my other ear, and, voila! Normal sound and volume. Shortly after that I started feeling the pressure in my ear and tinnitus. These symptoms fluctuated throughout the day. A couple days later, I had to fly out for some work meetings so booked an appointment to urgent care to get my ear checked. Hours before my appointment, I got hit with my first case of vertigo while in my meetings. A colleague took me straight to urgent care. There were no signs of infection, so the doc put me on a course of prednisone to hopefully address the inflammation and gave me some meclazine for the vertigo. The vertigo subsided after a few hours, thankfully. Fast forward to the weekend, and I had another bad bout of vertigo hit in the middle of the night which gradually subsided over the following day. A week later, the same thing happened. All the while, the pressure, tinnitus and hearing loss would fluctuate throughout the days. I got an urgent referral to an ENT who ran a battery of hearing tests and we discussed my treatment and symptoms up to that point, but I did not have an MRI or CT scan. He said he was 90% certain I had Meniere's given the symptoms, classic hearing degradation and frequency losses (low & high), and he gave me the usual instructions to reduce salt intake, cut down on caffeine and alcohol, etc. I'm a couple weeks post-visit now and following the dietary changes and am taking vitamin supplements, and antihistamines for seasonal allergies (which work well), but the typical symptoms persist - fluctuating hearing loss, ear pressure and tinnitus. Thankfully, I've only had a few minor vertigo bouts that last 1-2 hours in the past couple weeks. Question 1: How long have your "episodes" lasted? I'm going on two months now and trying to figure out if I should be setting expectations that this will continue into the foreseeable future, or hopefully, this "round 1" will pass soon. Question 2: Have you had surgery to address Meniere's and was it successful? I'm a very active cyclist and this has been interfering with my cycling. I'm trying to listen to my body and only cycle when I'm feeling 95% plus as I don't want to risk injury. Thanks for the insights! Cheers, Todd
Hi Todd, You've come to a great place to find a lot of information to help you navigate this diagnosis and live as normal life as possible. I have had Meniere's for about a year and a half now. If you click my profile it should take you to my most recent post, which is lengthy but details my diagnosis and lifestyle changes that have kept me vertigo free for over a year now. I still have occasional ear fullness that fluctuates but my hearing has returned to almost normal. I maintain a very active lifestyle and no longer allow fear to keep me from doing the things I love. I hope you continue to see improvement in your symptoms. Let me know if you have any specific questions after reading my posts. Best wishes to you! Katie
Hi Todd, I'm sorry you're here, but now that you are, you can get a lot of help and great advice. All the information that has been the most helpful I have found on this site. Question 1: How long have your "episodes" lasted? I'm going on two months now and trying to figure out if I should be setting expectations that this will continue into the foreseeable future, or hopefully, this "round 1" will pass soon. I have had this for 3 years, and the episodes have varied in duration, but in the beginning they were much longer than they are now. I had 4 or 5 in the beginning, and they were 5 or 6 hours, first vertigo, then vomiting and vertigo, and then lying in bed trying not to move so much as an eyelid or I would be vomiting again. Then a day to recover. I didn't have any vertigo for about a year, and then had a very bad and lengthy episode. After that I was free of vertigo for almost another year, and had two more episodes. However, they were much shorter in duration. I had the vertigo, vomited, went back to bed thinking I was stuck for the day, but then I felt better in about half an hour! The most recent one went something like this: vertigo for maybe two minutes, vomiting twice (as opposed to countless times in the beginning) and lying down for ten minutes and back to normal. So, I'm hoping that this is an indication that - and I can only speak about my own experiences - the vertigo is starting to wane as the years go by. Now, there are some people who go for years without problems and then it comes back for whatever reason, so I'm under no delusions, but it felt great to "just" have vertigo and vomiting for a short period as opposed to hours on end. I can definitely recommend that you take a look at the JOH regimen and other methods that are on this site. I take Valacyclovir (prescribed through tele-health visits with Dr. Gacek), Sertraline - started in February and feel it's helped a lot, and I have an Ativan prescription that I only use once in a while since I started the Sertraline. Also, Ativan is an actual vestibular suppressant, so it's not just calming you down, it actually helps with the episodes. Another thing I feel has improved with Sertraline is that my balance is not "off". I can walk for longer periods without thinking about it. I can't speak to Question 2, but there are people here who can - hope this helps!
I have had MD for over 40 years and I am now 80 years old. I have tried a number of things but to no avail. Just starting out I would try JOH.
HI Todd, This is one of the toughest things I've gone through. I've had small bouts and I've had two where my whole body felt out of control. One lasted about 2 weeks and one about 48 hours. I've changed my diet to mostly no salt, no table salt and read a lot of labels. I will say that has been the hardest thing for me. I also was put on a diuretic to help with keeping extra fluid out. Does it work? I'd say half and half. As I sit here today with what a know now will be a bout of all the symptoms. But much better than it was. It's irritating to say the least. I'm shocked that so many posts I've read that have Ativan available to them. My EnT didn't discuss that with me. I had it one time with my primary but she is not an advocate for it. But it sounds promising! Keep doing what you're doing. Don't let fear get to much in your head with MD. I've done that and went into panic attacks! Not fun. Best of luck, Rose
Thanks, everyone! I'm poppin' the recommended supplements like candy now and have gone low salt/caffeine/alcohol. I'm now two weeks without a severe bout of vertigo and nausea, thankfully. My tinnitus, hearing loss and ear pressure continue to fluctuate throughout the day, but I can live with that. Getting my salt balance is tough as I ride my bike 120-150 miles a week, so I have to replenish lost electrolytes consistently or my blood pressure plummets and I get really light-headed. I actually fainted for the first time in my life about three weeks ago which was an interesting experience! It scared my wife much more than it scared me as I landed on her step-dad's lap. LOL
Hi, Todd. I am so sorry that you are afflicted with this condition. I am glad you are improving. Short version of my story - I had all of the usual Meniere's symptoms (left ear). Vertigo episodes were increasing in frequency. I stopped eating gluten, the vertigo episodes stopped. It has been about 3 1/2 years now. Please give that a try if you haven't already. I would give it at least a couple of weeks. Note, it might or might not work for you; results of a Cyrex array 3x test show I have out of range "reactivity" to two components of wheat, so it made sense that cutting out gluten would help me. I would also recommend you check out the JOH regimen and as well as the relatively recent post about histamine from RubyGirl. Good luck!!
I agree with the previous post, get a script for Betahistine. I'm surprised your Doc hasn't suggested it before now. It won't cure MD but it will help with some of the symptoms such as brain fog, nausea, vomiting to name a few.
Betahistine has made a huge difference for me. Dr started me with 8mg three times a day. While that dose was helpful it wasn't until she prescribed 16MG three times a day that things changed dramatically. My episodes now are not frequent and are characterized by a few minutes of hearing loss and increased tinnitus only.
I take 2x24mg same dose as you do, and find a big difference to my symptoms. Still have permanent unsteadiness daily but manage with a walker when out and a cane inside.
Oh I’m New here and was just prescribed the betahistine!! You have given me hope! Thank you so very much! I’m tired of all The years of this, especially when you’ve gone to remission and then it comes back and it hit you like a ton of bricks and you can’t get out of bed and the nausea and vomiting and the utter whirlwind that’s going into your