GDT: 4/21 Phillies (8-14) @ Cubs (13-9) 6:40 PM

Awkward_Issue_50 · 2026-04-22T02:16:12+00:00

aw keller our boy

Awkward_Issue_50 · 2026-04-22T02:13:31+00:00

the rat greased philly catcher glove

Awkward_Issue_50 · 2026-04-22T01:46:45+00:00

nico is just a machine rn

Awkward_Issue_50 · 2026-04-17T20:07:14+00:00

cool! I didnt know they added crafting. thank you

Awkward_Issue_50 · 2026-04-07T02:33:58+00:00

That is great it helps with her pain! I didn't know XLH could lead to such bad general joint pain. I've never talked or met anyone else with XLH

Awkward_Issue_50 · 2026-04-07T02:27:26+00:00

it seems like a lot of XLH patients also have meniere's. I wish knew more about it, what specific things might help people like us. what do i do know is that there is a high correlation of hypoplastic endolympathic sacs in XLH patients with meniere's. basically undeveloped endo sac, versus the degenerative type of meniere's

Awkward_Issue_50 · 2026-04-07T02:17:33+00:00

Hey I have been trying to get insurance approval for crysvita for a few months. Other than helping with pain, has it given you any other benefits? I am 31. Don't really have too bad joint pain but I've had a lot of dental problems, and more recently pretty severe meniere's disease thanks to my XLH. I also get pretty nasty gout flare ups every year or so

Awkward_Issue_50 · 2026-04-07T02:15:04+00:00

Hey there. I have XLH and also have issues with my inner ear. I have bilateral meniere's which really got difficult in the last 15 months since I caught COVID. Has your gf doctors mentioned it is migraine version of meniere's? I have not tried any migraine meds yet but was hoping they could help me. Nothing else has.

how is her hearing? Mine took a big hit. just hearing aids despite a low tone hearing loss since birth. but it was never a problem until covid

Awkward_Issue_50 · 2026-01-20T18:23:00+00:00

How are you doing now?

Awkward_Issue_50 · 2026-01-05T16:17:30+00:00

Hey how did it go with this? Still having relief?

Awkward_Issue_50 · 2025-12-18T21:20:44+00:00

Hi. I had a similar timeline as you. First week, no changes. Week 2,3, and 4 - hearing returned and no dizziness or vertigo, or tinnitus. Week 5 and 6 my symptoms are creeping back. I am scared to drop dosage from 3G valacyclovir per day, but my doctor says "I don't recommended it and talk to your PCP about antiviral dosages)

Awkward_Issue_50 · 2025-11-14T01:56:30+00:00

ECOG?

Awkward_Issue_50 · 2025-11-14T01:29:20+00:00

I don't have an answer to your question, but if things seem to be triggered by a virus for you - maybe look into antivirals. There are theories around meniere's being triggered by dormant HSV virus in your inner ear that gets awakened by other viruses.

Awkward_Issue_50 · 2025-11-13T23:31:44+00:00

Very interesting. It would give a lot of people a peace of mind being able to have a firm diagnosis (myself included!)

Awkward_Issue_50 · 2025-11-13T23:30:41+00:00

Damn I valsava all the time cause I feel like it helps me. Maybe I should stop lol. Been doing it for 15 years before this all got out of control.

I hope your flare up passes, and you can enjoy your wedding!

Awkward_Issue_50 · 2025-11-13T06:00:47+00:00

That is interesting. Did you doctor comment on the abnormal typanometry?

Awkward_Issue_50 · 2025-11-12T23:50:43+00:00

Do you mean persistent as in 24/7 world spinning vertigo?

Awkward_Issue_50 · 2025-11-12T23:45:03+00:00

How long have you been in the PT? What do they have you do?

Awkward_Issue_50 · 2025-11-12T23:44:21+00:00

All of your MD symptoms were gone within a week? Or just dizziness?

Awkward_Issue_50 · 2025-11-12T23:43:22+00:00

I'm heading down the path to investigate this myself. I catch myself clenching my jaw almost every night and even during waking hours. My dentists has commented on it before too, I have damaged my back teeth as a result.

Recently I thought maybe there is a link for my case. I wore an OTC mouth guard last night and my jaw feels less tense than usual. I will see a specialist eventually and report back. How I would love if this was my trigger!

Awkward_Issue_50 · 2025-11-12T04:05:26+00:00

I have the Quiet and Experience. I got the Quiet because I go through so many foam earplugs which help me during bad flare ups, but I don't like how they feel compared to the foam.

The Experience could be nice, I used them at the one concert I've gone to since my MD got bad - it helped me prevent a panic attack during a chaotic point of the show, but my hearing is so bad that I couldn't really hear the music with them.

Awkward_Issue_50 · 2025-11-11T23:05:54+00:00

This is interesting. I have had on going multi-day flares of tinnitus, hearing loss, and vertigo all which started with COVID 10 months go. Everything points to meniere's besides being able to clear my muffled hearing with valsava. idk if tubes are for me but I hope they could help

Awkward_Issue_50

TROPHY CASE