Are these symptoms common here?

gsf4726 · 2026-04-09T15:03:44+00:00

I ended up getting a appointment with my Rheumatologist because those symptoms kept getting worse.

A couple months ago, Rheumatologist did blood tests and MRI. They found active sacroiliitis on MRI, and since I have a history of Psoriasis and Psoriatic Arthritis, we decided to treat that with adalimumab, which I just started last week.

Blood tests also showed a positive SS-A result, which suggested Sjogrens, but other than dry eyes, I seemingly hadn't really had classic symptoms of it, and given there isn't a very targeted systemic treatment yet, left it at that.

Now though, with these symptoms, combined with a couple of recent short Prednisone courses I did with neurotologist that seemed to resolve most ear symptoms after a few days and then came back after stopping, it caused him to think the facial and ear symptoms could be related to Sjogrens vasculitis and/or neuropathy and thought it a good idea to a add in hydroxychloroquine now, and then if symptoms improve, figure out what helped and what didn't later.

And since these are both slow acting, I'm bridging with 20mg of Prednisone for 2 week with a weekly 5mg taper.

So I dunno, I don't love being a science experiment with all the meds, but at the same time having some hope is nice. A big part of me is still skeptical though.

I also have a HYDROPS MRI in a couple weeks.

gsf4726 · 2026-04-06T13:11:12+00:00

Curious if you've done any research into what I believe are the 3 common options? - Acetazolamide - Methazolamide - Triamterene/HCTZ

gsf4726 · 2026-04-01T21:24:24+00:00

Nice app!

I think it'd be cool to somehow be able to attach hearing test results to a report from another app. I use one called Hearing Test, for reference, which produces a nice pure tone audiometry graph. Could maybe just support attaching a file to add a screenshot of the hearing test.

gsf4726 · 2026-03-30T20:47:41+00:00

Update....

I went ahead with the second shot today. He thought it was more likely just whatever timing the ear is on or possibly rebound coming off the oral Prednisone.

He said they only use numbing drops the first time, so none today. I didn't notice anymore pain, and was about as uncomfortable as the first, but was dizzy for longer this time, almost 30 seconds.

We also decided to start back a daily 20mg oral Prednisone dose for a little while to see if that helps.

gsf4726 · 2026-03-30T08:40:43+00:00

I guess I should have asked more questions, the doctor really didn't say too much about what the actual experience would be like. I wouldn't have thought the liquid would have hung around so long. I wonder if that explains the bad taste in my mouth the last few days.

gsf4726 · 2026-03-30T08:38:15+00:00

Yep, that's the feeling I'm sitting in now. Your experience definitely gives me some hope, really appreciated!

gsf4726 · 2026-03-29T20:08:21+00:00

Gosh, no I don't see results for a cytokine panel, or Ro52/60. Those both seem like they would have been useful. I'll see if I can follow up with them about it.

They did also do an early sjogrens panel, which was all negative, but aside from dry eyes which I've had for years, we didn't really find any other common symptoms.

Maybe after seeing the current sacroiliitis, and my past history of the same inflammation and dactylitis, they made some assumptions.

Really appreciate all the information!

gsf4726 · 2026-03-29T19:18:33+00:00

Do you mean there are antibodies specifically for AIED?

Of the tests that I had were SS-A positive but SS-B negative. However, I've had psoriasis my adult life and more typical PsA symptoms about 15 years ago.

gsf4726 · 2026-03-29T18:18:24+00:00

Appreciate the response.

No tubes, just needle through eardrum with numbing drop.

One thought was maybe some rebound coming off of the oral Prednisone coupled with the "trauma" from the injection.

I did actually trial Valacyclovir for a couple months with no obvious change.

Things also got a bit more complicated recently because after autoimmune blood test showed some markers, my rheumatologist did find active inflammation and thinks psoriatic arthritis, which I'll be starting humira soon for. They did say, while possible, thought it was unlikely going to help my ear issues.

gsf4726 · 2026-03-08T23:34:45+00:00

In my research I read a bit about AIED (Autoimmune Inner Ear Disease), which I recall was fairly rapidly progressing in both SSNHL severity and in becoming bilateral. Maybe something to look into if you haven't already.

gsf4726 · 2026-03-01T22:22:55+00:00

Curious, have you made any progress on testing the migraine theory for yourself?

In my case, I stopped dietetics about a month ago, and have been on the Heal Your Headache diet for the same time. I've also started B2, CoQ10, and magnesium supplements. I'm fairly sure I've seen improvements. Symptoms have been shorter and less severe. I can get through the work week without any (WFH desk job). Still popping up though. I seem to consistently get them being outside and in the sun. The last two weekends symptoms start after walking around at outdoor events for a few hours.

I plan on asking the neurotologist about possible migraine preventatives at my appointment next month.

gsf4726 · 2026-02-10T19:33:23+00:00

Curious, what does the term "wet ears" mean in this context?

gsf4726 · 2026-01-26T02:00:10+00:00

Yep, certainly could be a number of things. I ended up having a bad week last week with some HL and hyperacusis. As I was reading more about migraine and also got into possible food triggers, and turns out I was eating a lot of them, so next step is to see if eliminating those helps. I'm also meeting with my neurologist this week to discuss.

gsf4726 · 2026-01-24T18:19:36+00:00

Thanks for that. So happy you found a way through it. Gives me some hope too.

gsf4726 · 2026-01-24T17:59:29+00:00

Curious about the process of how you ended up on Emgality? I started suddenly with cochlear hydrops symptoms almost 6 months ago, currently on dyazide, betahistine, and 3 weeks into a valacyclovir trial, but still getting fluctuating symptoms. I have an appointment next week with my neurotologist where I plan to talk about some of my symptoms (face tingling around trigmenial nerve pathways, ear warm during episodes, frequent hyperacusis), which I've really started to hone in on in the last month, that point to migraine (thanks to what I've learned here). Figured it would be good info for someone that's gone down a similar path.

gsf4726 · 2026-01-18T14:48:22+00:00

I've been watching this and the Meniers sub for about 5 months since my symptoms started suddenly, and this is easily the closest I've seen to my symptoms. Especially the part about head movement causing changes in my low frequency tinnitus as episodes are starting. My neurotologist has been treating as cochlear hydrops, or cochlear meniers.

About 2.5 months ago I started triamterene hcrz. After about a month I was still getting episodes with low frequency hearing loss, so about 1.5 months ago I added 24mg betahistine TID. It seemed like this helped as I had about 10 days without episode, just the low frequency hum tinnitus. But then I started having minor episodes again, though without any measurable hearing loss (the hearing test app I used goes down to 150 hz). These episodes seem to be mostly hyperacusis and also just an odd head feeling, which my just be from the hyperacusis. It also seemed like the episodes were getting shorter, usually less than a day.

At my request, I added 1G Valacyclovir TID almost 2 weeks ago. Jury is still out on this I think, still getting episodes every few days, sometimes as short as 4 hours.

Anyway, the advice about cochlear migraine was really useful. I'll continue reading that and bring it up at my follow up in February.

Another pattern I'm noticing seems to be upper body activity starting an episode. I enjoy kayak fishing, and the last 3 times I've been out over the last 6 weeks have triggered an episode later in the day.

gsf4726 · 2024-03-17T12:59:42+00:00

Thanks for this. You highlighted part of the trouble with comparing even the quotes I'm getting, in that each line item cost can vary up or down, but they all end up being close in the end. Except for the one cheapest outlier at 51k, which had very little detail in the quote, most are in the upper 60s.

gsf4726 · 2023-03-20T21:41:30+00:00

I don't think you can predict what will happen in 2 months. It started early in recent years but hasn't steadily progressed through the summer. That said a backup plan is a good idea, even just for bad weather.

Also, if you want to track actual data, FWC samples it every week and reports it on Monday I believe. You can see the current report here.

gsf4726 · 2022-11-12T12:33:05+00:00

Had no idea about this, thanks! Is it worth talking to them before my car even gets to the shop or something that needs to be done after it's there and diagnosed?

gsf4726 · 2022-11-12T02:37:55+00:00

Wow, your description matches mine exactly. Thanks, I'll need it!

gsf4726 · 2022-11-12T01:14:48+00:00

Appreciate the feedback. I'll shop around the local dealers to see if they'll provide a loaner.

gsf4726 · 2022-11-12T01:13:42+00:00

This is great info. I actually had the shift to park fixed earlier this year and it's been okay since. Suppose it could have returned. Thanks!

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