Hi, I'm suffering in the last 19 months from fullness, tinnitus and hearing loss (10khz+) on both ears I did a MRI Meniere protocol and found : Normal left inner ear Right ear hydrops endolymph vestibule type 1 How can I get rid of it? Will I 100% develop Meniere? Thanks!
Hi Avi, my ENT specialists told me 90 of 100 hydrops patients won't!!! develop the full MD. So there is much hope for you. I am not the right person for any advice how not to get it, as I did. Looking back, my life at this point was way too stressed, I had a notoriously cheating, lying and absent partner, my job very exhausting. Daughter had left the household, exploring life and studying in a foreign country. So - get yourself the best life you can create. Best wishes Lilja .
Thank you! Can tell me what you tried to not get Meniere? Also who is your ENT? Haha Can you ask him or do you know if hydrops can go away? Wish you the best!
Well, Avi, I just did not think of getting MD. I was shure I was on a good path. I had been to a very good rehab, there they taught us coping strategies. Most of them stress related. I was in a good condition when I left the rehab after six weeks. Found my home ...well.. spooky. Dead flowers I had put in a vase on the table seven weeks before. Opened the fridge and water came out because of a rotten bellpepper. That's when I realised I was living in a big lie. My partner had not been in our house for all the time. In Germany, one word for lie is the same as for vertigo. Schwindel. This weakened me horribly. Three weeks later, I had my first attack. Many followed. Fast forward - 2 years of disaster and feeling trapped: I changed my life completely. I found the strength to leave. Rented an appartment in a nice house, living on my own. It is not that I am healed, but I think I have much more energy to cope with my handicaps. This is the one thing: to get in balance. What doctors call underlying conditions: my diabetes, allergies and food intolerances are also a continuous project. Also no caffeine, no alcohol, no drugs no cigarettes, low sodium and histamine diet. Sleep enough. Try to enjoy my life in the good phases. Can work, reduced to 6,5 hours a day. A highlight in my new life was a Jazz Festival my daughter had organized - and I could see and hear it. I danced. Often I can hear music very clearly and enjoy this so much. Have no hyperacusis any more. Tinnitus stayed, sleep with rain and thunder sounds. I cope and I am thankful for everything I can do again. Knowing it can be different again in 10 seconds. Whatever may come tomorrow: I have had a very good phase up to now. Why I tell this: you have to find your unique way to cope with the hydrops condition. Hope you have people who support you. Wishing you all the best and thank you for your good wishes, Lilja
Thank you for your personal story, I can learn a lot from it! Did you tried Betahistine and Diuretic before your first attack? Do you know if vestuiblar hydrops can go away? Again thank you so much
No, I got betahistine for the first time after my second attack of vertigo. (Before, I had Cortison treatments after the hearing loss episodes). 12 mg three times. Later 24 mg. Since May 2020 48 mg, with better results. But I don't think doctors prescibe it against hydrops. Maybe you ask your ENT doctor If could be helpful to prevent full Menière. Might be possible. Sorry, I have no idea if there are cases of remission of hydrops. What I learnt during rehab was getting used to it, face it. But: I know a musician who had 16 episodes of hearing loss, without any treatment, after that - he was fine. Maybe someone else here can tell you more? Good luck and good life !
This part of the story I don't know. He does not wear hearing aids. So,yes, I would guess his hearing came back.