View Full Version : Well, CRUD. :-(

04-23-2012, 01:21 PM
While at work this morning, I suddenly lost about 80-90% of the hearing in my right ear, and developed tinnitus. I mean, within about 2 seconds.

I have APS as well as Lupus (and some other pain-in-the-butt autoimmune stuff), so I immediately thought "uh-oh...CLOT!".

I had NO other symptoms of stroke - no dizziness, no numbness or tingling, no confusion - just the hearing loss. I immediately took extra aspirin (I am on aspirin therapy for the APS) and waited for a while before driving home.

Called my Rheum, and he wanted me to see an ENT ASAP (love those acronym rhymes...!). Well "ASAP" is tomorrow afternoon - after my stupid Echocardiogram and chest CT. *sigh*.....so tomorrow is turning into quite a Festival of Tests.

I am really kind of discouraged, because the weather is beautiful, I am feeling better than I have in three or four years (thank you, Plaquenil and careful food choices!), and I have a trip planned with my daughter for this weekend.

If it turns out the APS caused this, looks like it's starting to kick up a fuss, and I may be on Warfarin, which I was trying to avoid. AND Prednisone for at least 10 days, right when I was trying to lose that last 10 pounds I never seem to be able to lose.

Aaaaah, I shouldn't speculate, I know, but I can't help thinking about it. It's so discouraging, when I thought things were going so well!!!!! I just dread going down the rabbit hole....I know you can all sympathize.

Oh well. AT LEAST IT'S FINALLY SUNNY AND WARM, and the flowers are out!!!! Cheers me up, anyway.

(I did have a head CT only about 7 months ago, so I am not immediately freaking out and jumping to "tumor" like I normally would, LOL...thank heaven for small mercies!)

04-23-2012, 06:40 PM
Please let us know how it goes tomorrow. My thoughts will be with you

04-24-2012, 06:37 PM
Most tinnitus is caused by loud or high pitched noises.It can come on quite suddenly and is quite annoying.
I have had tinnitus in my left ear for 16 yrs-and after testing have been assured there is no damage to ear which can be repaired and no tumors.

As quickly as it developed I was concerned there was more to it but no just tinnitus-It really only bothers me occasionally at night so I play a radio low for background noise.

04-24-2012, 09:53 PM
I was diagnosed with Meniere's Syndrome long before any of the AI issues. My rheumy in Texas suggested that it could be Autoimmune Inner Ear Disorder. Here's a site for that: http://www.entnet.org/HealthInformation/autoimmuneInnerEar.cfm
Mine began with tinnitus and later developed into mild dizziness and balance problems. Every time it acts up, I can almost feel my hearing diminishing in the ear that is ringing. The last time it was tested, I had lost 60% in the left ear and 30% in the right.
I'm glad that you are seeing an ENT tomorrow. You might want to ask him about the possibility of Meniere's or AIED.
Good luck and give us a full report of all the testing.

04-25-2012, 07:50 AM
Well I am "profoundly deaf" in my right ear. I'm also trying to keep food down after the second 60mg dose of prednisone in about 14 hours. (It'll go to every 24 hours now).

The ENT wouldn't give me any definites, because I guess there are none. From what I can figure out from my own research, looks like I have maybe around a 40% chance of getting SOME function back - maybe enough for a cochlear implant or a hearing aid. Maybe not.

I don't really have tinnitus - just sometimes a dull whooshing. I got a tiny bit dizzy the afternoon of the day it happened, but I think probably a lot of that was just me freaking out, LOL....

The fears are staking up.

They are doing a brain/ear MRI on Tuesday to rule out blood clots and tumors (unlikely a tumor as I had a clear MRI at the end of September). if it's a blood clot, I'm screwed. The ear does not cope well with interrupted blood supply. it also probably means that my APS is ramping up and I will have to start taking Warfarin, which sucks.

If it's the Lupus, then I fear it attacking the other ear too, and I fear being on the prednisone/methotrexate bandwagon, which I was really hoping to avoid because the plaquenil was working so well.

I also fear it's the plaquenil itself - it says right on the insert that it can cause hearing loss.

I fear not being able to listen to music the same way, or hear my child call me in the middle of the night if I am sleeping on my "good ear". I fear only having one functioning ear - if something happens to that one, too.... (*shudder*).

I fear this is the start of all sorts of neurological problems.

Feeling pretty crappy now, in other words. Thanks for listening....

04-25-2012, 08:33 AM
do not borrow trouble.

i know it is scarey.
i know it is hard without answers.

but please allow your body time to relax.
stress is not good !!!!!!!!!!!!!!

please keep us informed.