Friday, April 20, 2012

Sjogren's and Ear Pain: I thought it was just me

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My ears have not been my friends, especially over the last two years.  I have had ear infections, chondritis, severe and debilitating ear pain and noise sensitivity that made it almost impossible to leave home on many days.  It was just last week that I had a double ear infection and luckily antibiotics did the trick.  As a result of my unhappy ears, I have often looked for a good source of information about Sjogren’s and ear problems and have not found a wealth of information.  However, the recent The Sjogren's Book (which I highly recommend) does have a brief summary by Dr. Soo Kim Abboud of the ear manifestations of Sjogren’s that packs in some important information.  Here are the highlights:

Hearing Loss - Sjogren’s patients are more likely to develop hearing loss both as a result of physical problems with the ear such as the ear canal called conductive hearing loss or problems with the nerves of the ear called sensoneural hearing loss.  Autoimmune hearing loss is a type of sensoneural hearing loss that happens when antibodies attack the auditory nervous system and is usually treated with steroids or other immunosuppressants.

Ringing in the Ears - Also known as tinnitus is more common in Sjogren’s patients especially those who have had nerve related hearing loss.  The reason for the occurrence of ringing in the ears in Sjogren's patients without hearing loss is unknown.  In these patients, biofeedback therapy or noisemaskers are sometimes used to help.

Ear Pain - This was a shocker for me – “As many as 25% of Sjogren’s patients have ear pain”. As someone who suffers from ear pain, I have seen many doctors and they have seemed surprised at the pain or view the pain as disconnected from my Sjogren’s.  So I found this extremely interesting.  While saying a link between Sjogren’s and the cause of the ear pain has not been formally established, Dr. Abboud does discuss two possible causes.  These include:

1)     Dryness in the upper airway causing dysfunction of the eustachian tube, which is responsible for equalizing pressure in the ear.  Eustachian tube dysfunction can cause a number of symptoms including “ear pain, hearing loss, fluid accumulation, and  even infection”.   According to Dr. Abboud, depending on its severity treatment can range from using a nasal steroid and saline to antibiotics to ear tubes.

2)     Relapsing polychondritis is an autoimmune inflammation of the ear cartilage (it may also affect the cartilage of the head and neck) that can cause ear pain in addition to redness and swelling.  This is usually treated with immunosuppressant medications.

After seeing four Ear, Nose, and Throat (ENT) specialists over the last couple years, I have not been able to find one particularly knowledgeable about autoimmune disease.  Right now, I rely on my rheumatologist, neurologist, and allergist to deal with treating my ear symptoms.   I do hope that there will be more medical research about the connection between Sjogren’s and ear-related symptoms.   Have you experienced ear problems related to autoimmune disease and was it hard for you to find proper treatment?




20 comments:

  1. Oh my ! Your post is saving me, I have ear pain since 2 weeks with no idea why, were it come from etc.. And I'm also extra sentitive to sound. Like I have hyper-ear. I use my earphone to avoid sound, not to listen to music !
    And thanks, I don't know this book, I will look for it.

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    1. My gosh, I stumbled up this blog but I am like you. Ear pain, deafness and hypersensitive to loud sounds.

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  2. So glad it was helpful to you (although there were only a couple pages in the book). Ear pain, sometimes with acute noise sensitivity, is such a daily struggle that it was eye opening. I too often use ear plugs to help.

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  3. yes! I have had brief bouts of tinnitus( thankfully it seems to resolve itself quickly) and pain in the ear canal. I am currently trying to understand some balance issues I am having and feel strongly it is related to my inner ear. Something feels like it is going on in there!I had an MRI two nights ago which i hope will shed some light on the issue

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  4. I had a MRI too to look at my ears. Wishing you lots of luck in getting to the bottom of your ear and balance issues. We have to be such proactive patients.

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  5. what nobody mentioned is that sjogrens attacks the glands...parotid, submandibular, etc...it causes pain and swelling...thus ear pain...its can be mistaken for tmj...so, do check your submandibular glands for tenderness if youre having ear pain...and have sjogrens

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  6. I am a Celiac patient with many of the symptoms experienced with Sjogren's Syndrome. All my life, I have had ear problems to include necessary tubing. About 10 years ago, I developed tinnitus and neural hearing loss, this cannot be remedied. My gluten free diet has helped with my liver enzymes becoming normal again, but sadly the ear problems still persist.

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  7. Thanks to all of you, I have been experiencing ear and jaw pain as well as balance issuses and pain behind my left eye. I was dx 1month ago with SS

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    1. So glad that you were diagnosed and that this blog and its amazing readers were helpful. For me getting diagnosed was half the battle -- I finally was able to get treated. Hope that you start getting some relief soon.

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  8. Dr. said mine is TMJ.

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  9. I have Sjogrens (dry eyes) and ear pain. I didn't realize they were related. It starts with itching in the ear canal. If I scratch it, I will get the pain. I have found that a heating pad makes the pain go away.

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  10. Wow.. All i did was type in Sjogren's and ear pain and I found this. Thank you. =) I had 2 positive blood counts, a few months ago and a week ago, and for 2 years thought I had MS with all my symptoms. I also have Neuropathy and this is all really starting to make sense to me after reading different posts from people on diff. sites and comment boards. What I'm not sure of is if this is primary or secondary. I've been tested for Lupus 3 times and other autoimmune diseases and had 3 MRI's, Brain, cervical&thoracic and Lumbar. No lesions, but she wants another brain MRI this week. I had white matter showing from the last one but the Neurologist didn't seemed to be worried.. ? who knows now.

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  11. I too experience noise sensitivity and constant ear pain..along with the usual awful dental issues. I wish there was a quick fix. :( At least I don't feel alone.
    Thanks for the info.

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  12. Yes, i have been looking and looking on line because no ENT seems to know about my ear pain. When i sleep on my side i have to make a little hole in my pillow with my fingers because the pressure becomes unbearable if I don't. I thought it was pressure from the paroid gland, but who knows? Itchy ear canal, where the MD accuses me of using Q tips (which I don't)! Most likely Sjogren's syndrome but no + DX yet either.

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  13. This is helpful! I have hashimito a auoimmune disorder that causes my.body to attack my thyroid but I have ringing and ear pain!! Gonna research more on Sjogrens

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  14. Ten years ago my first symptoms were excruciating eye pain and watering - causing me to stop on the motorway on one occasion. Extreme fatigue and then the ears started - the right on its own for about two years then the left joined in the fun! Hurting, blocked up, hearing loss. then painful feet and numb toes - now numbness and tingling over both legs. Then I started to have gum inflammation and my mouth is all dry and grotty. Anyway I have seen Neurologists, Opthalmologist, ENT,and rheumatologists and they each have dismissed it as Sensorineural hearing loss - just squirt olive oil in your ears; dry eyes - have some drops, oh try gel, how about this (I use three in 24 hours waking up twice a night to lubricate my eyes). Oh and the Rheumatologists? (three) have decided that I have arthritis (the simple tennis elbow type) and offer me steroid injections.
    Last week I found Sjogren's! I got rather emotional... Guess what I was 41 when it started and have just turned 50 now and had to give up my job and spend all day in bed in pain with constant fatigue. Now I have to decide who/how to tackle this... It must be embarrassing to be paid so much and so lousy at your job...
    I will be following your blog now!
    Caroline

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    1. It can be so frustrating. I've been dealing with sjogrens since the early 90's. Many ups and downs. I've done a lot of my own research because the current doctor seems to know little. I brought up the ear problem and the doctor wasn't familiar with it being a sjogrens issue and offered no help since no infection was present. I found that a few drops of warm olive oil really helps relieve the ear pain. I also have major problems with eye dryness, numbness and pain in fingers and toes, sometimes to the point of not being able to hold a cup of coffee or wear shoes, and fatigue. Still, doctors have little to offer aside from immune suppresents and pain meds. A friend suggested coconut oil so I've started using this on my very dry skin and also adding it to my diet. A recent article regarding dry, red eyes recommended 3000 mg fish oil, 2 1250 mg flaxseed oil, and 2 300 mg GLA Borage oil a day. Also stay away from night shade vegetables such as potatoes and tomatoes.
      Wishing you all the best.
      Mary

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  15. I have had severe ear aches for years. Left side is worse than the right. Usually the ear pain is accompanied by swelling of the lymph nodes and gland just under my ear, which leads to severe neck pain.
    My ENT told me that the Sjogren's is progressing, and there's nothing to be done about it. I do find that heat helps the swelling go down, which in turn helps the pain subside. It gets worse if I get sick with a virus or head cold of any sort.

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    1. I've had sjogren's for years. Ear pain started in one than the other ear this summer. My doctors had no remedy. However, I've started using a drop or two of warm coconut oil in the ear. This relieves the pain! Moist heat is also very helpful. (Coconut oil is also improving my cat's chronic ear infection.)

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    2. I was first diagnosed with Sjogren's just two years ago, but I've had just about all the symptoms mentioned by those in this blog for many years and just thought that my body had decided to break down in weird ways. I am currently dealing with a swollen red and painful ear and the parotid gland is highly swollen and painful. This popped up out of nowhere after I had a few particularly stressful days in a row.
      I've noticed that if I overdo it (not for normal people, but for me - too much activity or stress), I end up with something going off! It isn't always my ears, sometimes I wake up with a blood-red eyeball, or joints hurting so much that I don't want to get out of bed. I get what I call "bee stings" too - just out of nowhere it feels like I'm being drilled by a yellow jacket; a very painful deep pain that can strike anywhere - feet, legs, arms and even face or neck. I will sometimes get six or more in a week, and then they go away and I don't have any for six months! Can't find any correlation between them coming on and anything I eat, so I just don't know how to stop them.
      Then I get this strange hand and foot curling which is really weird, too. I found the name for it somewhere, but didn't write it down, so I need to look it up again. My hand or foot will go into a slow motion curl all on its own. I can't stop it or control it and it can be very painful, especially when its my foot. Like the bee stings, it comes and goes whenever - no apparent cause.
      I keep water by my bed as I have already awakened to such a dry mouth that it felt as if my tongue would crack and break. Like everything else, it comes and goes, with periods of weeks where my mouth seems perfectly normal and then I wake up unable to even croak due to the dryness of my mouth.
      Tingling and loss of feeling in my hands and arms, and sometimes my feet and lower legs is also another come and go symptom, although the tingling and numbness in my hands and arms seems to be getting worse. And I can definitely identify with the guy who said that he had to pull over on the roadside due to pain and watering of his eyes! Been there, done that!
      I am going to try the warm coconut oil for my ear. It is hurting so much right now. This is the worst it has ever swollen.
      It's pitiful, but good to know that I'm not imagining all of this!
      Thanks,
      Margie

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