View Full Version : has anyone had ear issues?

04-05-2009, 03:13 PM
has anyone had their ears or hearing affected by lupus?? i've having some pain where the jaw and ear come together... i had assumed it was the jaw aching since it's a joint.. but today, it feels more like an ear ache..

04-05-2009, 04:00 PM
hi mortified,

many members have problems with their jaws. my rheumy keeps asking me if my jaws are bothering me yet. so far, i have not had this problem. it makes since if the jaw is hurting, that the ear would also hurt.

i am sure that some of the members who have experience with this will be along shortly and will have information to help you.

take care, hope your pain is not too bad.

sick n tired
04-06-2009, 12:32 PM
Hey Mortified,

Yes, yes, oh yes...

I am having pain in my jaw, up to the temple area and over to the eye and cheek all along the jaw...

the doctor is beginning to think it is two things together and possibly 3...

Trigeminal Neuralgia... or tic doloureux (also known as proeopalgia) It can be sharp pain or episodes of mild pain
Episodes of severe, shooting or jabbing pain that may feel like an electric shock
Spontaneous attacks of pain or attacks triggered by things like touching the face, chewing, speaking, and brushing teeth
Bouts of pain lasting from a few seconds to several seconds
Episodes of several attacks lasting days, weeks, months or longer some people have periods when they experience no pain
Pain in areas supplied by the trigeminal nerve (nerve branches), including the cheek, jaw, teeth, gums, lips, or less often the eye and forehead
Pain affecting one side of your face at a time
Pain focused in one spot or spread in a wider pattern
Attacks becoming more frequent and intense over time

Another cause could be TMJ or Tempromandibular Joint Disorder (I hope I spelled that right):cute:
This is interesting as it hurts in some of the same areas as the Neuralgia above...and there is a site that has many more symptoms other than the jaw....
Signs and symptoms of TMJ disorders may include:

Pain or tenderness of your jaw
Aching pain in and around your ear
Difficulty chewing or discomfort while chewing
Aching facial pain
Locking of the joint, making it difficult to open or close your mouth
Uncomfortable bite
An uneven bite, because one or more teeth are making premature contact
TMJ disorders can also cause a clicking sound or grating sensation when you open your mouth or chew. But if there's no pain or limitation of movement associated with your jaw clicking, you probably don't have a TMJ disorder.

The last one is Temperal Arteritis, also called Giant Cell Arteritis...which I am going to be biopsied for even though I am just 47 nd not the main age of 72.....sigh...but I have had episodes of it hurting all the way up on my head like it is a path...this one is an artery,,which is right with the nerve that can cause the Neuralgia above....it can cause blindness and/or stroke at times so it needs to be checked, I just don't really want it.

The main symptoms are:

Patients with temporal arteritis usually notice visual symptoms in one eye at first, but as many as 50% may notice symptoms in the fellow eye within days if the condition is untreated.

Tenderness of scalp (combing hair may be painful)
Pain in temple area (may be excruciating)

Transient blurred vision

Loss of appetite




Drooping lid

Double vision

Sore neck

Jaw soreness, especially when chewing food

I hope you don't mind the book I have just written:cute:

04-06-2009, 02:40 PM
Hi Mortified,

I have had some serious problems with my TMJ, the joint where the jawbone connects to the skull. It has subsided after the use of a mouthpiece and muscle relaxants. It took about six months to get out of it. I would wake up in the morning, and I could not eat until I popped my jaw back into place. It was hell. I had pain up into my muscles around the ears and temple from it. What I thought was an earache, was actually inflammation in the muscles around the ears. I do have some hearing problems and tinnitus, but I don't think it's Lupus related as it started after I had a hand grenade explode a little too close to me. Makes your ears ring, go figure! Anyway, it sounds like you have a problem with the temporal mandibular joint, or TMJ. It's different from having a problem internally with your ears, and can be treated without having to do any invasive procedure or take any really serious meds. This could be what's happening to you. I would ask your Dr. about it, and see what his/her opinion is. Hope you get this figured out soon.

04-06-2009, 03:15 PM
Hi Mortified! You sound just like me! I have those issues BIG TIME! Its weird though, my left ear is a lot worse than my right. It does FEEL like an earache. My ENT checked my ears with some tests but he said everything looks good and he said i have GREAT hearing. No kidding, Its TOO DARN GREAT for me! Im so jumpy at sounds, they're so MAGNIFIED since ive gotten sicker. My jaw will lock up when drs. want to check in my mouth almost every time. Im looking for a new rheumy though cuz along with some other reasons, he said i just need to relax when it started locking up when he looked in my mouth. I WAS relaxed, i told him how it can "just happen" at times but he rolled his eyes and he was mad i couldnt open up my mouth bigger without it hurting. JERK!:fing26: Thats what i really wanted to do! LOL Anyways though, im still looking for the confirmation on that one(TMJ). All i know is it gets worse when i flare,its just weird to me though that my left ear is that much worse.:dunno:

04-06-2009, 04:26 PM
I was told by my ENT that he often sees Lupus patients with ear pain. I was having ear infection after ear infection. My doc has also said that he believes my ear is just a target when my platelets get severly low. (I was very prone to ear infections before my diagnosis) I do have jaw pain also, but I just assumed it was because it is a joint. Hope that helps a little :happysad:

04-06-2009, 04:34 PM
Thanks Froggal! I too experienced numerous ear infections (especially as a child) before this disease cropped up on me. I do have a low white blood cell count that has shown up a few times also. Always something new with Lupus! :wacko:

04-07-2009, 11:03 AM
thanks everyone for the advice.. i guess i need to find myself an ENT and get this checked out.. although today, it doesn't feel as bad..

i don't know about everyone else, but it's like my issues take on a regular rotation.. one day, it's the hands or even just one hand or a few fingers or wrist.. the next day, it's the eyes.. then the jaw or ears, usually just one side.. then the other hand or wrist.. then the feet... and on and on...

and just when i think, i've got to do something about this... it morphs to a different location

04-07-2009, 01:04 PM
hi mortified52,

this is lupus.....it is intermittent, it has its own mind, it sneaks around in our body and attacks at its own discretion. this is one reason that my rheumy just does not focus on blood work. when we have symptoms, by the time we get in to the dr. and get blood work, the lupus has moved on, and everything comes back in the normal range,

so once again we hear "it must be your lupus." i hate those words.

i have had it attack areas for two or three months without letting up, and this really wears you down. Once, i wore both arms in cushioned arm slings because of the excrutiating elbow pain...i could not stand for anything to touch my elbows. and it has lingered inthe kidney area for a long time, but usually it takes on one area then moves on to another.

it is an individual illness, and each person has to find their own way to deal with the attacks.....personally, i like Scotch. :trink26:

oh, i hope i don't run you off. sometimes this sick humor helps with releasing anger.

04-08-2009, 06:43 AM
That sounds like something i am experiencing too. I had biospies done on my temporal artieries (ouch) that did not feel good and it took awhile for the hair to grow back but they were negative. I have been having headaches for the past 2 months and tomorrow i go for the 3rd epidural in my cervical spine because of a bulging disc there. But i still have headaches and the pain i was having up the back of my head is better but the temple pain and the face pain is still there. Thank you for in info i thought it was only me . Hope that you feel better soon. Something is always changing with this diease and i am glad to know i am not alone. Bonita

04-08-2009, 06:57 AM
My mom had Temporal Arteritis back in the late 70's...and they gave her prednisone which I don't know if that is the norm now.....she gained like 100lbs while on it.

I have headaches and feels like it is in my ear and in the jaw also....I thought it was my ear.

I didn't know that this was one of the Lupus things. When I get back to a doc I will mention it.

I'm glad I saw this thread.

04-08-2009, 07:13 AM
Hi Mortified,

My Lupus is like this little army of nomads that just keeps moving around and attacking things. Some days, it's almost like I can feel the inflammation moving around, it's weird, but that's Lupus.

Phyllis, scotch works for me too! Glenfiddich Single Malt is my poison.


04-08-2009, 10:20 AM
LOL Phyllis! Scotch!! :laugh:

04-08-2009, 10:30 AM
Hi Mortified,

My ears are very sensitive to outside influences, such as loud music, the wind, and shouting. They used to not be so sensitive before the lupus.

04-08-2009, 10:37 AM
Same with me Drinkowatr! I am so jumpy at someone just crumpling a piece of paper! OUCH! My senses are VERY Hightened these days:wideeyed:

04-08-2009, 10:39 AM
The last one is Temperal Arteritis, also called Giant Cell Arteritis...which I am going to be biopsied for even though I am just 47 nd not the main age of 72


When are you scheduled for your biopsy?


04-08-2009, 12:50 PM
I forgot to add that my ENT also told me that some of the meds that are frequently taken by lupus patients also can make your ears sensitive. I know that long term use of pain meds was definately on his list. I do not remember all the others he mentioned but I can certainly call and ask him to explain it to me again!!

04-08-2009, 06:51 PM
hi froggal,

that is really interesting...i have not heard that before, but makes sense. yes, if you don't mind, i would like for you to get additional information on sensitive ears and pain meds....sometimes my ears are so sensitive, i can hardly stand normal noises.