Hello all! I am grateful to have found a community of other who can understand what I am experiencing. Feb 2021 after a stressful event my hearing on the right side diminished greatly, replaced by a tremendous roar and what I now know is called aural fullness. It resolved in 2 days, thankfully - I didn't think a second time about it. I then had a severe bout of increased tinnitus which was likely related to the Covid vaccine's immune response, and another hearing loss episode in May. Both times my hearing recovered. I saw a neurotologist who thought I might have cochlear hydrops, but didn't confirm it as I'd only had two episodes. Did one batch of steroids to restore any lost hearing but not sure if it helped, overall my hearing was mostly restored by that point. From then on till October, smooth sailing till it happened again, and another ENT confirmed it's likely Cochlear hydrops (Meniere's). Since last month though I've been having non-stop attacks - 6 or 7 in the last month and each time a day or two to resolve. I'm on a no-salt diet for the last many months, and over the last couple months no sugar and no caffeine, no snacks of most sorts. I just eat roasted veggies and rice for all meals. However it's not helping. Another batch of steroids have not helped stem the episodes. I do feel lightheaded sometimes but haven't had true vertigo and I am hoping I don't progress to full MD from Cochlear MD. I just found out about JOH and started with some of the supplements only couple days ago. I'm currently on anxiety meds as this has wreaked havoc on my entire life. Struggling to get appointments with any neurotologist in the Seattle area. Today I'm having another episode of hearing loss and just got frustrated with the situation - I managed to get an appointment with a different ENT tomorrow although not a neurotologist. I was hoping to share and ask what treatments I can ask him about? No doctor has prescribed any medication and I'm willing to try anything to stem this. So far I have acetazolamide, acyclovir, amitryptline and betahistine to ask about - any other things I can ask for to help? Thanks all and looking forward to spending more time here
Hello Arvind, my experience with Amitriptylin and Betahistine 48mg three times a day have been good so far since last May. In my opinion it is very important to calm down and be as balanced as possible. My doctors told me only ten percent of the cochlea hydrops patients get the full program with vertigo. Well I was one of them. Try some physiotherapy, maybe also relaxing and massaging the neck and skull. What about your jaw? Clenched? Get it relaxed. Maybe also some lymphatic drainage ist helpful. I found much comfort in the videos and books of Julian Cowan Hill in my loud and horrifying phase. Wishing you all the best, Lilja
Thanks so much for the response! I hope it will not progress in my case to full MD. How long was your interval from Cochlear Meniere's to full MD? Thanks so much for the tips on relaxing. I get really worked up and I'm sure that's making things worse. My jaw does have some issues and I am seeing a TMJD expert who has given me a bunch of exercises + is making a special applicance fitted for my jaw. Hoping all these things help. In you case did amitryptline and betahistine help with the hearing loss issues, or just vertigo? Best, Arvind
Well, my first episode of hearing loss was in November 2016, the first vertigo attack on September 11th 2017. My hearing loss is quite stable and not very severe. I would not say "just" vertigo, that's really the worst part by far. So I am very grateful I can sleep with 37,5mg Amitriptylin in the evening. Try to mask the noise in your head with nature sounds is another tip. I have a playlist with meditative music and rain with thunder sounds that helps me a lot. The most important thing is to care for yourself and to get stress relief. Best wishes again, Lilja