Hi all - Wondering if anyone else out there can relate ... I've been diagnosed with Meniere's for over 10 years now, with flare-ups now and then over the years. It was confirmed "bilateral" in the last month with a flare-up that is really altering the ability to hear in my "good ear." Some days are better than others; it seems to be constantly fluctuating right now. A Medrol pack initially was very effective, and brought my hearing back to "my normal" within a couple of days. But then it flared again, so then it was prednisone, then another Medrol pack, now back to prednisone. I believe the steroids have helped some ... but not completely. The last few days have been tough ... trouble hearing, distorted hearing (hyperacusis), some dizziness (thankfully no serious vertigo). Doc wants me to get a 2nd opinion from another otolaryngologist/neurotologist, so I have an appointment in a few weeks. Doc also wants me to see a rheumatologist (appointment next week) because my blood work is positive for the Anti 68kd antigen, suggesting an auto immune component to my problem. He thinks trying the med methotrexate ay be helpful. Anyone else out there have a similar experience? What do you know about the auto immune component? Other suggestions? All due respect, but I'm really only looking for *positive or constructive* feedback. The internet is full of negative/scary information ... I'm focused on keeping it positive! Thanks in advance!
There seem to be a number of different ‘versions’ of Menieres and therefore different ‘cures’. While steroids never worked for me, what did work was antivirals but also allergy shots. For me, allergies seem to be part of the story although i was not a person who had typical allergies like hay fever etc. I think allergies would be considered an immune system issue. I also have some other immune system problems but then they seem to be pretty common. I would go with whatever works for you. If you do not get the success you are looking for long term, i would give the antivirals a try because they have worked so well for so many here. There are many doctors who pooh pooh them because apparently they arent yet in the text book under the menieres chapter but they do help a lot of people. Good luck and i do think you will find what works for you as so many have. Stay positive .
Meniere’s is not a diagnosis. It is a descriptor for a common set of symptoms. The causes are multifactorial and unknown. Auto-immune issues are one of many suspects. We all have to find out what works for us as individuals. It is a process of trial and error. The key is to find a good doctor and work with them to identify triggers and palliatives. You are right. Dr Google can be bad medicine and keeping positive is a good idea. Anything that maintains and boosts the immune system is a major contribution to better health. Lifestyle changes (diet, exercise, rest) can often be helpful.
Thanks Yellow & June. I appreciate just even knowing someone out there "gets it" and also the encouragement to keep trying things. I will ask the docs about the antivirals too.
If its bilateral then autoimmune etiology is always suspect. By all means get tested. But AIED is very rare. But more systemic autoimmune disorders that can impact fragile organs like inner ears are much more common. Both of my ears are fried. I am autoimmune. I now take Humira for gut etc. But all of my docs say its what killed my ears. Unfortunately Humira, Embrel, etc are not FDA approved for ears. Good luck. Talk to Dr Hain in Chicago if you are looking for someone who understands this.