Ear Pain

[lisabeth]

Hi everyone,

I have been having really severe ear pain (both ears) since about June or July on and off.  It can be extreme at times.  My hearing is normal, and there is no fluid behind the ear drums.  I also feel pressure in my sinuses and behind my eyes and pain around my ear/jaw as well as deep in the ear, but I am not congested at all.  It isn't an ear infection as antibiotics have had no effect on it.  My regular doctor doesn't know what to recommend other than anti-inflammatory medications.

Has anyone else with Sjogren's had this happen?  Have you found relief with anything?   I did read that Sjogrens can cause dryness in the sinuses which leads to inflammation of the Eustachian tubes.  This makes sense, but the problem is I don't know what to do for it.  It can be very debilitating when the pain is severe.   I do not have a rheumatologist yet.   The first one I went to said that Sjogren's ONLY causes dry mouth/eyes and anything else is extremely rare so I did not go back to that office......

Please let me know if you have ever found relief for this kind of pain?

Thanks. 

[valene2009]

i havent had much luck with the rheumotoligists either.. they all hae different opinions and its crazy-i like the one i have now as a person but she told me sjogrens didnt cause constipation. too me it's common sense-when you are dry you can have those types of probs..

anyway, i am responding because i too have ear problems but no doc will address them.  i even told my GP a week ago-he is the best but he just wants me to see another Rheumy.. I dont think he wants to give me wrong info.  a lot of times my ears feel full and like i have an ear infection and then it also goes away.  I also get major ringing in my ears and have gotten that for about 3 years before i began plaquenil. that comes off and on too.. do you get the ringing too??? sometimes i hvae to get off the phone with people cause even if i hold it away it hurts my eardrums.

[jazzlover]

MAYBE it's a fungus?? I was just diagnosed with that. I'm using Lamisil cream on a Q-tip. I DO have fluid behind one eardrum.

Got any flakiness there?

[Joe S.]

Are you wearing your polar fleece mumps scarf to bed?

[newhorizons]

Are you wearing your polar fleece mumps scarf to bed?

Yes, Joe! 

I have now acquired a polar fleece ski mask at Walmart the other day for less than $10. It is proving easier to keep stationary during the night as I have eye mask and CPAP to contend with as well as the polar fleece item.

Love the warmth the mask provides!

[Joe S.]

You may want to try listening to the tones for earache: http://www.chakraforce.com/Tonations.html#317.

[newhorizons]

Thanks Joe, I'll give it a try.

[QueenV]

Lisabeth,

I've had severe ear pain for many, many years and I've found that the wind, particularly when it is cold outside will exacerbate the pain to an intolerable level. I do not produce ear wax whatsoever. I'm wondering whether or not you do? I suspect producing wax is a protectant for the ears? My ears are extremely dry and flaky both inside and out, and I have very dry and scaly skin all over. I presume this is from SJS. My dermatologist prescribes Ammonium Lactate lotion for my skin. I do have pretty severe hearing loss in both ears, but I'm not sure what to contribute it to.

I didn't mean to drone on about me, but want to let you know you're in good company. I do hope you get some concrete answers from someone knowledgeable, as I know just how unbearable the ear pain can be.

All the best to you,
Victoria

[Patze]

Hi Lisabeth, yeah, me too.  The pain can be unbelievable (my left ear mainly).  I don't know about you, but whenever my sinuses get dry, the ear acts up...the drier they get, the worse the tinnitus gets too.  I don't have any fluid behind the ear drum, but I do get terrible itching from time to time if that makes any sense. 

Hi Victoria, you mentioned that you don't produce ear wax, I find that there won't be any wax for several days to several weeks and all of a sudden I'll get an outpouring of the mess for a day or two and then nothing again (the ENT just raised his eyebrow at that one - no answer from him).  I also notice that my itching increases during that time too.  Interesting.

Hi Valene, yep, have tinnitus in both ears with the left one being the worst (it's always the left one that gives me the most trouble ).  The noise levels go up and down depending, but it never goes away (had it in the left ear for seven or so years now, and the right ear for about three-four).

I know what you mean about not having much luck with finding a good rheumy.  Are you near a teaching hospital or a major medical center by chance?  I ask as there are usually cutting edge doctors to be found in and around them.

Y'all take care now -

Patze

[Pisces24]

I would definitely try sinus rinses for a week to see if it helps. I use the Nettipot bottle and it helped me. You don't mention if your glands are swollen or not but if they are swollen is can be either from infection or you could have a blockage that needs the gland flushed.

Queen V: My dr didn't believe me when I told him if the wind is blowing, I have to cover my ears or I most likely will get sore ears. He said it didn't go in that way.  Nuts!  I "plug" my ears when it is windy or very cold.

[QueenV]

Pisces24,

I also have to cover my ears in the wind or I'm in a world of hurt — it feels like nerve pain. I wish more docs were receptive to what we tell them. They just might learn something.

Take care all,
Victoria

[lisabeth]

Thanks everyone. I don't have any ringing or flakiness. My glands feel tender to me, but not real swollen. The pain can be excruciating.
I think it's related to sinus dryness.
So what is the best thing to use in a netti pot??
When I tried saltwater, I did not have a good reaction.

It seems like if there is something that would moisturize the sinus cavities, it would help.
Is there such a thing??

A friend told me that mucinex helps with ear aches and it seemed to make
mine worse. I wondered if it dried me out even more!!

[Luna]

My ears hurt and itch inside also. Its from dryness. And the wind is brutal. My son's E.N.T told me I can put mineral oil, baby oil, or even olive oil inside my ears to help with the dryness and ease the effects of it. He just told me this yesterday , so today will be my first day trying that. Im definatly going to buy some ear muffs for this year.

Luna

[Patze]

Good luck with the treatment Luna, and I hope that it helps your ears. 

Hi Lisabeth, a neti pot is good for irrigation and I try to use it at least a couple of times a week to help with my sinuses.  I also use Ocean Mist spray a couple of times a day and it seems to help (that is when I remember to use it! ).

Take care of yourselves -

Patze