Well hello vault sorry for the delay a little busy with my job. So our stories are somewhat similar. I woke up last July with my ears plugged like I had been on an airplane, went to the doctor thought it was a Meniere’s or vestibular migraines told me it was sodium or stress gave me prednisone. It went away continue to come and go back-and-forth on and off and then in October. My left your blocked 100% so my right was already partially deaf blocked 90% put me into a tailspin major vertigo couldn’t walk laid in bed for two days. Back-and-forth on prednisone just like you 60 mg back-and-forth several times I’ve been on it for probably nine months various doses then they put me on methotrexate which wasn’t working at first then they gave me a shot along with the prednisone which they still don’t think either one’s working actually shouldn’t say that the prednisone works which is a good thing so ideally, they should be able to find a drug, but they can’t I did reach out to Mayo clinic for a second opinion waiting to see if they’re willing to see me or not the only reason mine is diagnoses AIED and not possibly the same thing you have is it because mine went bilateral so when it went from one ear to the other they decided it was AIED I’ve never heard of what you’ve been diagnosed with. I was really looking forward to maybe learning Spanish that was probably gonna be sign language. I do have tinnitus as well in both ears in the beginning it was pretty bad they convinced me to do the sound therapy, which when you don’t have tinnitus it’s really easy to suggest what to do the hearing aids. I did get hearing aids right away to be proactive because it does take a while to get them. You got to make appointments to get fitted for them and make sure they set them up appropriately. They do have features in there for sound therapy for brown or white noise or various things to help you get through it. It’s kind of cool is I do the Bluetooth through my hearing aid so I can answer my phone and it makes it really easy to hear what it will tell you about the hearing aids and this comes from me and several other people that I know with them is they don’t help with clarity so you can make things louder and sometimes it can be really uncomfortable, but things still some kind of fuzzy . I was actually going to reach out to my audiologist to see if there was a different type of hearing aid that might be better for clarity, but like you, I’m trying to be optimistic and you seem very optimistic in what you wrote I could be worse, right not sure why it’s happening to either one of us have been told it’s really common in middle-aged women that are type a personalities and people pleasers, which I am that type of person and. I can tell you it’s been a crazy roller coaster right now. I’m trying to wean off the prednisone to see if I can handle how it’s going to be and then maybe stay on the methotrexate. I’ve also gotten mixed reviews on reaching out to let’s call it functional medicine, which is a doctor that would give you like lots of supplements that’s a zoom class a B 12 vitamin D but you’re not supposed to have anything comes from an animal no alcohol drink water which sounds totally boring. Not alone in all of this I am finding based on this Maio connect which I think is amazing because I hate social media and I got kicked off Facebook twice. Just trying to get on Facebook to try to join a group of people with a AIED so this Maio thing is great. And the volunteers and mentors seem amazing. They reach out they connect they have resources. I’m actually very pleased with us. I feel like there’s at least somebody out there that wants to try to help so. Feel free to reach out anytime. Good luck. Keep me posted on how your stuff goes. Once you start to be enough that prednisone.

Hi Boldt, just looking to see where things are going for you know I ended up getting a shot in my left ear of prednisone, which was somewhat painful and in talking with my ENT I am to going to see a neurologist now because there’s a slight link between hearing loss and migraines that I’ve been a migraine sufferers since I was 14 still going deaf, but kind of curious where that’s gonna go. I’m doing fine I don’t really need hearing aids just dealing with the fluctuation and the tinnitus.

Sorry vault I spoke this and it put Boldt in by mistake!! I need to learn to check before I hit. Send.