Meniere's is a notoriously hard condition to treat for a whole variety of reasons, which include the power of the placebo effect. The "evil twin" of the placebo effect - the "nocebo" effect may also have a part to play in Meniere's. All of these things produce real symptoms - it is not "just all in your head".
I've had a taste of paradise the past two days. For whatever reason my hearing has been dramatically better and Monday evening I played my first social music evening for a couple of months, and I almost felt like my old self. Then last night I had a rehearsal for a new band I've formed with my daughter and a good friend ready for our first gig in two weeks - I made the plans ages ago before the hearing totally collapsed and we kept everything going in the vain hope that maybe I'd somehow be OK. And this evening I was close to tears - everything sounded just, well, perfect. I was making beautiful music with my beautiful daughter. It could all end tomorrow, but I had tonight and no one is taking that away from me ever.
If you've been following my Meniere's journey, either from occasional posts here or on my Substack (https://neilcanham.substack.com/), you'll know I've come very close to quitting music altogether several times. I use hearing aids but have had appalling diplacusis and massive drops in hearing (swings of 40 or 50db), and the first few months of this year were awful. So this has been an amazing few days. What did I do to achieve this? What magical advice do I have for you to achieve the same? What pill, potion or secret blend of supplements did I use? Nothing, none. Literally nothing but patience, time and hope.
Haven't seen anyone mention this yet - three of the researchers whose work I covered over the past months recently released a new paper showing a link between a mutation of the PHEX gene and Meniere's. I've summarised the paper in this article for those interested
I recently asked you lovely people about your experience with AIED (if any) - thanks for your feedback. I've completed an initial overview of what might potentially be Meniere's baby sister in some senses (given that Meniere's also has sometimes an autoimmune component). Maybe this sheds some light on it or at least shines a light into the murky water!
What started as a small investigation into whether betahistine and antihistamines really caused issues when taken together turned into a 3 week project with the help of a meniere's researcher and doctor to find out as much as possible about betahistine. Why it began to be used, why it isn't licensed in the USA, how it may work, whether is really does. I seem to have to pull on every thread! The result is attached. As always, "it's more complicated than that" seems appropriate :)
I have been asked a few times about this in my Facebook Meniere's support group. I realised I didn't know the answer, so began digging. Initially it looked quite clear that AIED was a rarer and clearly distinct diagnosis. However then I joined a support group for AIED and found that almost everyone seemed to more likely fit a Meniere's diagnosis. I think I am beginning to understand both the overlap and the differences, but I am interested on your thoughts. Has anyone been diagnosed with AIED? Or feel that they have a mistaken diagnosis? I am aware that there is a potential subset of Meniere's with an autoimmune origin and maybe another with an autoinflammatory origin. What looks similar is obviously fluctuating hearing loss, possibly vertigo or other vestibular issues, some potential for tinnitus and fullness. What looks different to me is the speed of onset, speed of progression to really bad hearing and the prevalence of issues with both ears in AIED.
One of the most under-appreciated aspects of a condition like Meniere's is the complete lack of a new "normal" to get used to, to adapt to. Every day a new traumatic adventure with plans abandoned and aspirations set aside. It is grinding and demoralising. I found there is some research to support that this can lead to additional health issues. There are though things we can do to try to help ourselves cope - exercise, sleep, meditation, journaling, and of course grabbing the good days with both hands. I've written more - maybe it resonate with you.