Hearing Issues?

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MapleLeafBear
Regular Member


Date Joined Mar 2014
Total Posts : 167
   Posted 4/24/2014 1:19 PM (GMT -6)   
Hi Guys... so a short background - I have always had various symtpoms of an autoimmune disease (bone pain, swelling, exhaustion, etc.) and my mom had SLE. My cousins have various autoimmune issues, as well. My doctors have tested my ANA and it's always come out negative, so then they pass off autoimmune issues as an impossibility. I recently shared my exasperation with this issue a few weeks ago, when I decided to not go to the rheumatologist, thinking he would just dismiss me like the others have.

Well, about 2 years ago, I started having stomach issues. I saw a GI, who did a colonoscopy and diagnosed me with GERD and IBS. Back in January or so, I started having bad ear pain and some hearing loss. I went to the ear doctor and she told me I had LPR Silent Reflux and gave me prescription Prilosec, which in fact did help to clear up the ear pain.

Fast forward to Tuesday, I woke up and could not hear out of my left ear!! It felt like there was a cotton ball in there or something blocking me from being able to hear. Additionally, I could not hear any of the normal noises you would hear inside of your own head (like swallowing, etc.) when there's a cotton ball in there. So I called the ear doctor and asked for the first available appt, which was not until today. Yesterday, I still had some hearing loss, and a terrible echo in my left ear but the cotton ball feeling had gone away and I was quite dizzy yesterday. Today, I woke up, less dizzy but still a little hearing loss.

I went in to the ear doctor, expecting her to tell me that this was another symptom of LPR silent reflux, but instead, she examined me, made me do some movements, did some odd things and then said to me at the end that she wants me to come in the same day that this happens again for a hearing test and that she wants to try and rule out an autoimmune cause!! I did not mention any of my autoimmune suspicion at all. This is the first time that a doctor has said this to me and it made me feel so triumphant that finally a doctor sees that that could be going on!!

Sorry for the novel, but I just felt so excited that a doctor finally listened to every symtpom I described and came to that conclusion.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/24/2014 3:35 PM (GMT -6)   
So glad a Dr finally listened. Maybe she knows a rheumy that won't be so dismissive. Some of the older Drs just don't know that the method of diagnosing Lupus is now 4 of 11 symptoms!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/24/2014 3:41 PM (GMT -6)   
I've lost some of my hearing too. I don't know the exact cause but it does seem suspicious.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/24/2014 4:06 PM (GMT -6)   
When my Lupus is flaring sometimes my hearing fluctuates, and so does my eyesight. A little Prednisone usually knocks it back to normal. I did once have vertigo for about a week...that wasn't fun.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 4/24/2014 9:44 PM (GMT -6)   
Hooray for the affirmative voice! Indeed, what a triumph! Goes to show that you just never know where the "break" is going to come from. I hope this never happens to your hearing again, but on the other hand, I'm curious about what the hearing doctor has to say. . . .

Jan
"If there are no dogs in Heaven, then when I die I want to go where they went."
Will Rogers

MapleLeafBear
Regular Member


Date Joined Mar 2014
Total Posts : 167
   Posted 4/25/2014 10:28 AM (GMT -6)   
Thanks guys! Now I just have to sit back and hope that a very uncomfortable symptom comes back on a week day so that I can go and prove that I'm not just making this up.

MizPiggy31
Regular Member


Date Joined Feb 2012
Total Posts : 114
   Posted 4/25/2014 1:43 PM (GMT -6)   
AubreyBear, I have not had that specific hearing issue. I have had my hearing in one ear sound muted and then I hear I high pitched ringing in my ear. It only last for about 2 minutes and then goes away.

Has anyone had this before?
Between diagnoses (auto-immune or fibro)
Planqueil 200mg twice a day, Lisiniprol

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/25/2014 1:47 PM (GMT -6)   
I've woke up with my hearing muted, but they ring loudly all the time.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

MapleLeafBear
Regular Member


Date Joined Mar 2014
Total Posts : 167
   Posted 4/25/2014 3:33 PM (GMT -6)   
Sometimes I have the ringing, too. I have a lot of pain in both of my ears (deep inside) and my ENT has always said it was LPR/Silent Reflux, but now I'm wondering if it is actually inflammation. Any thoughts? The Omeprazole did seem to help, but the side effects were so terrible, I had to try natural supplements, like aloe vera.
IBS and lupus-like issues.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/25/2014 4:04 PM (GMT -6)   
My reflux was so bad I had to have the surgery to fix it.
Check out the gerd forum here they have some wonderful tips.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 4/26/2014 6:25 AM (GMT -6)   
Some of the medications we take can cause ototoxicity which is in effect a poisoning of the inner ear.

http://vestibular.org/ototoxicity

I've experienced this with plaquenil although it seems to be subsiding somewhat now. I've had vertigo, dizziness, ear pain, hearing loss and ringing in my ears since starting it. Some NSAIDS can cause it too, so it could also be the combination of my taking celebrex and plaquenil now.

The side effects warnings on most prescriptions will state that the drug may cause these symptoms but it doesn't explain how or why.

In many cases it will pass and is usually not severe enough to warrant ceasing a certain medication. However sometimes it can, so it's important to see a specialist and have it checked out. Autoimmune disease can also cause inflammation and the same symptoms, so it's tricky to diagnose (ofcourse! When is it not?!).

I just thought it was important enough to add to the conversation as it is a possibility.
UCTD , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Plaquenil, celebrex, advair, flovent, dovobet, vitamin A,B,C,D,E fghijklmnop ;)

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 4/26/2014 6:31 AM (GMT -6)   
Here's a pdf which gives a pretty extensive list of the drugs that can cause ototoxicity,

http://www.ata.org/sites/ata.org/files/pdf/Ototoxic_Brochure_by_League_for_Hard_of_Hearing_2012_Jul_12.pdf

I hope this doesn't cause any undue panic, as I said - many times it subsides or is mild enough to be tolerable and not warrant any drastic measures.
UCTD , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Plaquenil, celebrex, advair, flovent, dovobet, vitamin A,B,C,D,E fghijklmnop ;)

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 4/26/2014 4:28 PM (GMT -6)   
Hello AubreyBear--

I was looking for some things online and came across this article (link is below), but I do NOT mean that it fits your situation. The title caught my eye, and I thought you might find it interesting to read.

I'm not sure how to search for other Healing Well posts, from the past, but I bet there have been some that relate to your problem!

I was searching for information about having tender scalp, of which I'm having now, with the last time being a couple of years ago. Several of the sites I checked out about scalp tenderness also referred to ear issues.

Here's the link that I mentioned:
http://www.asha.org/aud/articles/innereardisease/

Take care--
Jan
"If there are no dogs in Heaven, then when I die I want to go where they went."
Will Rogers

MapleLeafBear
Regular Member


Date Joined Mar 2014
Total Posts : 167
   Posted 4/28/2014 10:41 AM (GMT -6)   
I think I've made a connection between the hearing issue and alcohol intake. When I could not hear at all last week, I had had about 3-4 glasses of wine two nights beforehand. Then this weekend, I had 2 glasses of beer on Friday and on Saturday, my hearing was a bit off (not nearly as bad as last week though). I googled Lupus and alcohol and I saw a lot of information about alcohol causing some flare ups and other issues. Thoughts?

jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 4/28/2014 11:34 AM (GMT -6)   
Pretty wild, but you might be on to something! Hmm...alcohol intolerance and hearing loss/pain associated with a flare.

Sorry I don't have anything helpful to add, but I'm curious to read what others have to say.

Hang in there, AubreyBear!

Jan
"If there are no dogs in Heaven, then when I die I want to go where they went."
Will Rogers

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/28/2014 3:33 PM (GMT -6)   
I'm a tea-totaler so my hearing loss isn't alcohol related, but it is flare related in my opinion.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

MapleLeafBear
Regular Member


Date Joined Mar 2014
Total Posts : 167
   Posted 5/22/2014 3:03 PM (GMT -6)   
Jan - I spoke too soon on the IBS board about my ears being better. I'm having one heck of a time today. Bad, bad bad shooting pain in my right ear. No alcohol this time and have been on a super strict diet the last two weeks. I'm actually incidentally going to the GI doctor this afternoon and I'm going to mention the LPR/GERD thoughts of my ENT doctor and my recent visit to her where she indicated that there might be something autoimmune going on. But either way - I have to get this ear thing figured out! I can tell I'm losing my hearing gradually in my left ear and the pain is becoming unbearable and inescapable mad

jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 5/22/2014 5:50 PM (GMT -6)   
You’ve got a pulse on your dietary have and have not’s, AubreyBear. Sounds like you went through a process of elimination (no pun intended) to see what your colon could handle? The 8-10 foods you’ve selected are wholesome, and they work for your situation.

I completely agree with you about issues being closely related. All of us could go into business with a “connect the dots” game. Or maybe an autoimmune jigsaw puzzle that continues to be an extended/updated version. ;)

Kudos on your exercise habits. You’ve got the incentive to shed those last pounds! :) I know you’ll do it!

I am SO sorry about your ears today!!! Goes to show that it’s hard to predict one day from the next, huh? At least you’ve discovered that it isn’t provoked by wine. (phew!) ;)

After I read your post, I put “autoimmune, ear pain, hearing loss” into a Google search and came up with a few things that might be worth your time, but you’re probably way ahead of me and have done plenty of research. Seems like your ENT doctor is on to something—and good that you’re able to share her thoughts with your GI doctor today.

Absolutely, this issue needs to be addressed and remedied--at least with something to relief the pain until the culprit is determined. I mean, HOW are you supposed to focus on your wedding in three weeks?!?! I am soooo happy for you, AubreyBear. On your vaca, indulge as much as possible with your body’s approval. . . . :)

Please keep us informed as to what your GI doc says--

Oh, as Lynnwood mentioned, did your ENT doctor suggest a good rheumatologist?
I realize that you're kinda busy at the moment ;), but maybe you could schedule an appointment now for when things slow down a bit?

Thinking about you and sending my best--

Jan
"If there are no dogs in Heaven, then when I die I want to go where they went."
Will Rogers

jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 5/22/2014 6:05 PM (GMT -6)   
More specifically, I entered "autoimmune and shooting ear pain and hearing loss" in my Google search...
"If there are no dogs in Heaven, then when I die I want to go where they went."
Will Rogers

MapleLeafBear
Regular Member


Date Joined Mar 2014
Total Posts : 167
   Posted 5/22/2014 7:08 PM (GMT -6)   
Well, I explained the ear issue to the GI and told him what the ENT said. He wants to send me to the allergist next to rule out celiac because I could have had a false negative blood test and the celiac could be causing the ear issues. I've done some googling and found a person who had the same ear pain that I described and a negative celiac blood test but ended up having celiac. He said he would happily just go forward with an endoscopy and biopsies but I told him that I would rather try less invasive things first, since the colonoscopy was a little hard on me. I've been 100% gluten free and am still having the symptoms I first came to him with, minus the intestine pain.

I think that the ENT and a referral to a rheumatologist will be my likely next step though - if I could just get the hearing issue to pop up again so that the ENT can see it with her own eyes and believe me that I literally could not hear for an entire day.

MapleLeafBear
Regular Member


Date Joined Mar 2014
Total Posts : 167
   Posted 5/22/2014 7:19 PM (GMT -6)   
As for the rheumatologist, I have not gotten any recommendations. The ENT wants to see me ASAP next time it happens and then refer me. I did a brief search and none of the ones near me come very highly recommended. Then again, people only go online to review doctors or businesses when they want to complain and far less often to say nice things.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/22/2014 7:21 PM (GMT -6)   
I wake up sometimes with my ear stopped up and everything muffled. It lasts about ten minutes..I can't imagine having it happen all day long.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 5/22/2014 9:21 PM (GMT -6)   
My method to find a rheumy -- visit www.lupus.org and find your closest local chapter. Check in with the chapter and see what rheumies work with them. These are the rheumies most likely most up-to-date on Lupus & auto-immune diseases, and the ones most interested in helping you out.

When my inflammation was greatest, I had ear issues & eye issues -- that's on the days I didn't have joint/muscle issues, or whatever else. I would skip the ENT with their relatively narrow focus and head straight to a rheumy. But that's just me....
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

tenXmom
Regular Member


Date Joined Jan 2013
Total Posts : 62
   Posted 5/23/2014 5:51 PM (GMT -6)   
My Rheumy sent me to an ENT for evaluation, from there an audiologist - no pain but I have hearing loss in only one ear - after the MRI verified no tumor I was fitted with one hearing aid - lately I've noticed ringing in my good ear and things seems clogged (never noticed clogging in the first ear, though) - working up my energy to go see the audiologist

No drinking here - even before the liver problems
Only meds I was taking at the time were Prednisone and Imuran (my lifetime friends)
Laura aka tenXmom
AI Hep - AI Pancreatis - Lupus - RA & Osteoarthritis - Reynaud's - Fibro - AIED - TMJ - Sjogren's - and whatever is going on with the gallbladder...

jan1952
Regular Member


Date Joined Mar 2014
Total Posts : 357
   Posted 5/23/2014 10:11 PM (GMT -6)   
Gosh, AubreyBear, you have received so many thoughtful suggestions and heartfelt commiserations from the wonderful forum folks. I know you'll get this figured out and be able to tame the beast. But in the meantime, that's another story . . . one step at a time.

Thinking of you--

Jan
"If there are no dogs in Heaven, then when I die I want to go where they went."
Will Rogers
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