Hearing loss, balance and Minears? Anyone have this?

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/30/2009 3:16 PM (GMT -7)   
Hi--
I saw my ENT today and he said that my hearing and balance was good, but that he felt that I do have a real problem and that unless they test it right when my hearing goes out, it won't show up.  He said that there is an autoimmune problem that effects the ears and balance and that if they don't test right when it is happening, they can't document it and they can't do what they need to do, like get me on stronger immunosuppressants, to prevent hearing loss.
 
He also talked to me about Minears, which my mom had and he said it is hereditary and also autoimmune, and that it will go away but can be really irritating, but he can't say that is the problem unless they rule out the autoimmune thing.
 
Does anyone know about autoimmune problems attacking the ears eyes and balance centers and effecting hearing? Outside of Minears, I never heard of anything like that?
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 7/30/2009 3:32 PM (GMT -7)   
Yes, I know some members have similar issues as I know there are 2-3 older threads about this. Let me see if I can find them.
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882


jessierose
Regular Member


Date Joined Jan 2008
Total Posts : 102
   Posted 7/30/2009 3:52 PM (GMT -7)   
Yes! my left ear has been hurting for about 4 mnths now. Have gone to pcp to get it looked at but nothing. I had virtgo in 12/08
JessieRose
 
 
SLE, APS, Celiac,
 Zoloft, Plaquenil, Asprin, Predisone, Methotrexate, Folic acid


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/30/2009 7:10 PM (GMT -7)   
Thanks Lynnwood for searching for those. This disease is just lovely. Nowadays the docs just ask me what still works right, instead of what's wrong.
Jessie, sometimes my salivary glands and lymph nodes swell near the eustachion tube of the ear and make it feel like I have strep throat or an ear infection. Massaging them helps sometimes. I am funny about my ears, I keep feeling like they are full of wax but doc says they are spotless. You might want to see your doc on the ear, that's a long time and drops can help. Also, teeth can make your ear hurt. Thanks or the replies.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 7/30/2009 7:54 PM (GMT -7)   
I've had vertigo a couple of times and they just tell me "it looks fine"...I think it's an inflammation from lupus since it occurs when inflammation markers are up and goes away with a slight increase in prednisone.

Try a search (see search in the 2ond blue bar at top of page) - if you use "lupus ear" most of the stuff we've discussed before comes up.
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/30/2009 8:05 PM (GMT -7)   
Thanks Lynnwood
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 7/31/2009 9:24 AM (GMT -7)   
Menieres disease.
 
 
http://www.vestibular.org/vestibular-disorders/specific-disorders/autoimmunity.php
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 7/31/2009 10:46 AM (GMT -7)   
I'm losing my hearing in my right ear, have deafening tinnitus and vertigo.
I went to see 2 different ENT's and was told it's not meniers since menieres is associated with "fall down, sudden vertigo" and my vertigo presents upon waking.
Both ENT's told me I had to live with this and said it was my "lupus". They were genius!

I went to see a RN who specializes in hormones (I'm in perimenopause) and she suggested to have myself checked for something called silent migraines.

I went to see one of the top migraine dr's in Montreal and he did a bunch of tests andthe conclusion is; I have silent migraines with MAV (migraine associated vertigo). This causes hearing loss, vertigo and tinnitus.
The cause is not lupus but hormonal fluctuations from going into perimenopause.

Maybe this is something you can look into for you. Hormone fluctuations often mimic auto immune symptoms.
 
 

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/2/2009 7:39 PM (GMT -7)   
Thanks peacesoul,
My endo system is a mess from hormones and disease so this would not be a surprise. I can't remember well enough to know what was going on hormonally then. I will have to write thisstuff down.  Thanks so much and I hope your migraines are under control. I did have a bad migraine at the time because I remember thinking I was having a stroke because I don't get headaches much, except as a medication side effect.
 
Thanks again and hope you are doing well.
 
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

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