Hi! I'm wondering if any of you have experienced hearing loss with a flare?
Background- I've been feeling really good most of the summer but starting about 3-4 weeks ago I began losing hair like mad, and my joints and parotid glands have been acting up. Now at this point my hair is at LEAST 1/3 thinner than it was before and my arthritis in my hands and feet bothers me throughout the day consistently, I'm having to wear lidocaine patches and they don't always work.. I noticed I do have lots of tiny hairs sticking up on my head so it seems the hair is starting to replace itself at least but now today I woke up with additional pains in places not normal for me (like my elbows) and significant hearing loss. I have a feeling in my ears that I can't really describe as I've never had it before. It's almost like standing beside very heavy machinery that is vibrating, yet I don't HEAR any vibration or ringing or anything. I just have this feeling and I can't hear properly. Do you think this sounds like a normal and temporary part of a flare or is it more likely unrelated to sjs? Do you think it sounds more like a rheumy issue or a GP one? I'm planning to call the Dr tomorrow if I wake up again still feeling like this. Thanks for any input.
kerrikins
I know that SS can cause ears to become dry and itch but I've not heard about a hearing loss. Have you tried going to an ENT doc? Good luck- let us know what happens.
Kerrikins,
I'm sorry you're having the bad flare. The hearing loss concerns me; I hope you do go to one of your doctors - the rheumy, if there isn't a long wait there - to check it out. (Do you have a history of thyroid disease that could be causing the hair loss?)
Hugs,
Cheryl
When my head plugs up from pain/inflammation, my hearing sometimes plugs up for days, in both ears, then it goes away. I know my allergies contribute......
Think its just inflammation...best to talk with your doc though.
Gursie
Hi Kerrikins,
The sound in your ears you mentioned, like heavy machinery running, reminds me of when my ear drum was full of fluid. Awonder if there might be some low grade infection going on. Maybe you should call the doctor.
Hi Kerrikens,
As info, Sjs can cause hearing problems. I am losing my hearing of high tones due to Sjs atttacking my inner ears. (I think it's my ear drums, but not sure without looking at my medical report from the ENT.) Mine sounds like a mosquito buzzing and it never goes away. People speak in high tones, so it makes understanding what people are saying impossible at times. Really sucks. You hear the background noises just fine, but not conversation.
I was researching and Lidocaine patches can cause ringing in the ears or hearing changes. You might try stopping the patches to see if your hearing clears. If you continue to have issues, I recommend you see an ENT. They would have testing equipment that a GP and Rheumy would not.
Also, you might try Mucinex or its generic, guaifenesin to help clear your sinus cavity and that may relieve any pressure in your ears.
Hoping you feel better soon.
Shade
Autoimmune disease can attack many nerves...auditory nerves are common . It is another component of an inflamatory attack. As far as I know there is not anything special to correct it. Prednisone would do the trick in the short term.
Thank you so much for the replies, they are really helpful!
So, of course, today I woke up ok in the hearing department. Which is great but it also means I would feel silly going to the Dr about it. I guess what I can do is call the Dr right away if it happens again and I'll also be sure to talk to the rheumy about it when I see him in October... Unless I have to go sooner. My arthritis is really bothering but I'm never sure what level of pain I'm expected to just live with. so I try to wait until it gets super bad and even then I sort of feel like I'm bothering the doctor. He's a nice guy so it's just my issue I guess! If I have this pain another week I probably will end up calling.
I thought about my meds causing it but I haven't had a problem before. Of course that doesn't mean it couldn't be them! I'm not on cymbalta but a few other of my meds could have that effect, along with the lidocaine.
Cheryl, my severe hair shedding has always been linked to my AI disease activity. I don't know if it's super common with sjs flares or not, but it is with lupus. I don't have anti DNA but the doctor is on the fence about it anyway because of some of the symptoms I have. I do have a thyroid nodule but I've been told the levels are ok. Ive had it checked tons of times over the years, before the sjs dx, but i had a check lately for the nodule and they did a T3 and T4 and TSH, I think. I remember TSH was 1.3.
Thanks for the ideas everyone. I have no idea what that was, but it was pretty scary. I think it would be very hard to live with an issue like that long term so I'm thankful it's gone :)
Maybe you could still mention the event during your next doctor visit?
Yes, I'm definitely planning on talking to the doctor about it :)
Anytime I hold something in my hand the joints steadily pulse with pain so I decided to bite the bullet and call the Dr. I didn't mention my hearing but b/c of the hair fall they said they want me to come in tomorrow. So, I'll get to ask about the hearing problem then. If it turns out to be anything I'll update!
Hi Kerrikins,
Yeppers, I know what you mean about the hearing coming in and out (mainly out for me these days). When I noticed a loss, I talked to the ENT and he said that I was to young to be having this kind of hearing loss. Be that as it may, I've been battling this mess for several years now and recently gotten hearing aids (a life saver!).
Ask your ENT if he thinks you might need a baseline hearing test, and I'll keep my digits crossed that you get an answer soon.
Take care of yourself -
Patze
I am 56 and also have noticed the hearing loss and now have two hearing aides. The audiologist said the cookie bite shape of my hearing profile was a common sign of autoimmune hearing loss.
Mine is mostly a loss of hearing dialogue when there is background noise...ie tv...or noisy outdoors. I am fine at both ends of the spectrum...just the middle range is affected.
Well, I'm home. It was almost 5:30 by the time I was seen and the Dr still spent 30 minutes with me, he is so nice :)
With my hearing, he said maybe something was putting pressure on the tubes and causing issues, or a few other possibilities. Since it was a one time thing it's ok but if it happens again it will need to be looked into.
For now though he was much more worried about the sudden hair shed. So I'm to see a dermatologist and he ordered a bunch of labs. Another Ana, an anti DNA, sm & sm/rnp, c3 complement and crp. I don't expect anything to show up though. No matter how bad (or good!) I feel, I always have an elevated Ana that never goes up or down, and that's it. I can have visible inflammation and still that's it! In the meantime I'm to up my daily prednisone until they call back with the results and then we see what's next. He wanted to put my on an Rx NSAID but since I'm allergic to ibuprofen I cannot have it :(
Something weird though. Lately I have been having a lot of pain in the small joints on the ends of my fingers and toes in addition to my regular problems. He says that any pain past the middle joints isn't from CTD. Does anyone else with AI joint issues have pain in those joints?
What's CTD? :-[
CTD is connective tissue disease. Sjogrens, lupus and RA are all types of CTD.
Kerrikins :)
Hi Kerrikins,
I was diagnose with primary sjogrens in Feb. 2009 but I probably had it since 2004 when I started having alot of dental problems and a very dry mouth. My dentist thought it was my medication but I wasn't taking any medication. My husband notice my hearing loss before me. If my husband is in the next room and he talks to me I cannot make out what he says. The TV has to be on real loud so I can hear it. I also started having hair loss a few months ago. I take evoxac 30mg 3 x daily and it really helps. I don't think I've ever had a flare.
Olga, may I ask, did your hair loss start before or after you started taking Evoxac?
I take Evoxac as well, I started almost 2 months ago and my hair had been pretty stable until 3 weeks or so ago. I've had mad sheds like this in the past but not since I started plaquenil.... The doctor didn't mention the possibility of Evoxac doing this to me though. Considering my joint pain picked up at the same time, that may have ruled it out for him, i don't know.
As per hearing, even when I don't have obvious problems like I did the other day, I am forever saying "what" to people. I don't know if it's my hearing or auditory processing or lack of concentration. I'm "only" in my 30's and I think I'm too young as well!
I am 32 and have experienced hearing loss in high tones. I have read that Sjogren's can attack the 8th cranial nerve which is responsible for hearing.
I think that is what is going on with me. I also experienced numbness in face and scalp. Plaquenil has helped numbness and dryness a lot.
I guess the Sjogren's is attacking my cranial nerves from what I've read.
Cranial nerve problems are also what my Dr was worried about. After reading about it, I'm 99% sure that this is what happened to me. I've been having vertigo on and off for the last few months, and I've also always had transient episodes of parts of my face going numb. I have to admit, it's frightening! If I have another severe episode like that I'm going to the Dr straight away to get tested and hopefully get treatment for it.
Hi Kerrikins,
My hearing loss started 8 months after I was on evoxac. My cousin has Lupus & sjogrens is also having hearing problems. She is taking evoxac. Does anyone else has a hearing problem that takes evoxac?