In my only other thread at the time of writing this, I proposed an awareness challenge. I think this definitely deserved a dedicated post. My proposal is a Mary-Go-Round challenge for a treatment/cure. Perhaps others have better ideas, but it is time to be proactive; not only for us, but for everyone that comes after. Some here have found relief through various means while others continue to fight. Let's move this thing to the frontlines. Please contribute any opinions or ideas here. I've seen terminal patients with the gumption to raise awareness. We are living. We are not dying anytime soon due to vertigo and misery. Let's do something about it: Win.
What if my daughter contracted this due to the same susceptibility. What about your kids? What about you, now? I would not wish this on an enemy. I will certainly do all within my ability to prevent my child, and all other children, from the whirling talons of the same devil. And all within my ability to slay my own burden where he stands. Restore Balance and March against Meniere's.
We will need to compile a registry of places accepting public donation. Encourage and begin a challenge. Talk about what we share in common. Social media. Publicize. Let people know a problem exists and we are a standing, albeit wobbly, army in the face of uncertainty.
https://www.hopkinsmedicine.org/otolaryngology/research/vestibular/VNEL This seems like a hopeful place to start.
Nyynth, I was too was diagnosed at a young age. 28. I am now 38. You have a very different perspective on your situation than most on this site. Many people on here are already retired and are at a very different point in their life. I don't think you will get much of a response for any MM research spirit. This a great site for information on Anti-Virals and Surgeries. I would get as much info on those two things as you can. There are many people on here who have seen it all. So now some good news for you. https://soundpharma.com/sound-pharmaceuticals-announces-positive-phase-1b-results-and-the-start-of-a-phase-2b-clinical-trial-in-menieres-disease-2/ I was in this trial last year. Its not a cure. But it works . It reduces the inflammation. However its only a temporary band aid. https://globenewswire.com/news-release/2017/11/08/1178119/0/en/Otonomy-Reports-Positive-Results-from-AVERTS-2-Phase-3-Trial-of-OTIVIDEX-in-Patients-with-M%C3%A9ni%C3%A8re-s-Disease.html This was supposed to be approved this year. Had a hiccup in the US trial. Doing another trial this summer. you should try to get in it. http://www.aurismedical.com/product-candidates/am-125 Don't know much about it...Its in Europe. https://www.businesswire.com/news/home/20171221005185/en/Frequency-Therapeutics%E2%80%99-First-in-Human-Safety-Study-FX-322-Hearing If I was a betting man (I am) I would bet on these guys. This is 6-8 years away but if these guys pull this off...its a game changer for everyone on this site. Keep an eye on them. Hey man...I would keep trying everything. Let me know if you are organizing anything...Happy to help you out. Don't want to pour ice cold water on my head but I have been pounding the FDA for years. You should get going on that. Good luck bro.
Thank you so much, man. I haven’t exhausted all my options in the short-term, personally. Antivirals are still on the table, but I would like to raise awareness and funds regardless of personal failure or success. I can only imagine how frustrated others, and maybe I, might be at the end of the road and truly no one deserves to feel abandoned by medical oversight of their disease/syndrome.