Hi all— I've been a long-time reader here and finally decided to post. Your discussions and information have been invaluable to me since my initial diagnosis a year ago. I have cochlear hydrops, experiencing severe hearing loss, pressure, and aural fullness. Attacks are usually a few weeks in length. Fortunately, I haven't experienced room-spinning vertigo yet. Over the past year, I've tried various treatments including low sodium, AIP diet, behathistine, acetazolamide, low carb, TMJ splints, JOH pieces, and antivirals (Acyclovir, Valacyclovir, and Famciclovir), with mixed results. Recently, I've been dealing with constant roaring tinnitus, pressure, and hearing loss for the past few weeks. I switched to Famciclovir in July, but then went back to Valacyclovir 3 weeks ago due to some issues. Interestingly, I started Paxlovid a few days ago when I got COVID, and within 8 hours, my symptoms improved significantly. My hearing got better, roaring tinnitus improved by 90%, and my regular 24/7 tinnitus returned. This positive response to Paxlovid makes me wonder if my case is entirely antiviral. I'm curious if anyone else has had a similar experience with Paxlovid while having COVID? This immediate response is different from my previous experiences with other antivirals. Could this mean that Paxlovid is targeting a virus that isn't EBV, herpes, shingles, etc.? Or is it a different virus affecting auditory or cochlear nerves? Could COVID have attached itself to nerves? Just to provide some background, my cochlear hydrops/meniere’s symptoms started 11 months after recovering from COVID in 2021, and a few weeks after contracting another obscure virus in Mexico. Makes sense that mine could be totally viral related. This is a fascinating development that could potentially shed light on an underlying cause of my condition.
I've had COVID--once was presumptive as I couldn't test (just had sinus surgery so a swab up the nose was a Bad Idea) and once about four months later with a positive test. In both cases I had Paxlovid (I'm high risk, reactive airway disease). No change in my Meniere's at all.
Thanks for your input! It could just be coincidence that my case got better on Paxlovid... I'm planning to update in this thread once I’ve stopped taking it.
Update 8/23: Towards the end of my Paxlovid course, my Meniere's symptoms returned. I then talked with a top neurotologist — they thought the reaction with Paxlovid might indicate an underlying viral cause, possibly tied to a herpes virus that Paxlovid could potentially suppress. It was suggested that my initial encounter with COVID and another viral infection back in 2021/2022 might have acted as triggers, reactivating a dormant herpes virus and starting my Meniere's. For another angle, a conversation with another Meniere’s patient shed light on an interesting perspective. According to them, a rhumeatologist at the Cleveland Clinic proposed that Paxlovid, albeit subtly, influences the immune response, thereby alleviating the autoimmune reaction responsible for triggering Meniere’s. I've used prescription antivirals all 2023, yielding both positive and negative outcomes. Encouraged by the improvements I experienced while on Paxlovid, I was inclined to believe that a viral factor was my root cause. However, delving into various Meniere’s forums exposed an enlightening detail yesterday: the generic valacyclovir I had been taking, supplied by the manufacturer Mylan, proved ineffective for numerous Meniere’s patients. I made the switch to a different generic manufacturer yesterday, and my distorted hearing and roaring tinnitus are already better today. I'll update more in the upcoming weeks!