ear swelling with SS?

Does anyone with Sjogren's have problems with fluid not draining in the ears or lymph node swelling behind the ear? My left ear has been blocked from draining and now the outside of my ear is swollen. That usually means an ear infection but my Dr. checked and said my ear looks good except this is a lot of fluid built up. They don't know why the part of my ear is swollen. Only guess is it's a lymph node draining from a reaction to a virus or anything and it's swelling and causing the ear to swell. It's been going on for a couple of weeks. They suggest I use allergy meds and decongestants to help dry up the fluid. My question is if anyone has had this problem and what they did about it and also, is this common with SS because of getting swollen lymph nodes?

13 Replies

  • Hi there, I did have this problem when my parotid glands weren't working properly. There was fluid build up around my ear and also my ear lobe. Was quite painful so pain relief and anti flams helped. Also massaging the gland from the ear towards the jaw helps as well. Could also be an infection in the gland so antibiotics might be needed. Two doctors and a dentist didn't pick this up so was a bit tricky to figure but finally ears nose and throat person worked it out. Then sjogrens diagnosis. Best of luck.

  • Did you also have the outer ear swelling? My dr is confused by this since she can't find an ear infection.

  • Yes around my ear lobe and it was also hot with the inflammation and felt squishing to the touch around that whole area.

  • How did the ENT treat it for you?

  • Antibiotics and anti inflams to start. He also recommended the massage technique as well as people on this site which does help. Then had the parotid glands flushed (Sialoendoscopy) which hasn't helped me to be fair but was probably worth trying. It flares every now and then, but usually settles with massage and anti inflam tablets if it gets too bad.

  • I am experiencing a similar problem at the moment !! Initially when i was flaring before i was diagnosed my parotid gland was hamster like and my lymph node were swollen, i also had sore throat and ears almost constantly without sign of infection . Now on rituximab my parotid is mainly under control with massage , lymph nodes are not as swollen but still have ear and throat problems. I had an episode of severe vertigo 8 -12 weeks ago and was referred to ent who couldn't see infection so thought it was inner ear problem . So no further on but i feel it is a sjogrens problem , my ear can feel full and painful - i cant take decongestant because of other meds . I have sinus probs as well , really annoying at the moment and ears keep popping. Im afraid i have not suggestions to help unless your ent may take an interest. Some people suggest regular spoonfuls of honey ??? Best wishes xxxx

  • Hi, I haven't seen an ENT yet. Just the clinic doctor who wasn't sure why the outside of my ear would be swollen because that usually means there's an infection but she can't see any. My ear isn't even red. Just swollen. She thought maybe it was a lymph node draining and the swollen lymph node may be blocking the ear. She said to take allergy meds and decongestant for 2 weeks to see if ear clears and that takes care of swelling. I've had issues with ear not draining before and it never caused swelling so that's why I wondered if that was a common SS issue. I'm guessing a ENT would be the one to follow up on this? My doctor said to mix white vinegar and alcohol 50/50 and let sit in ear for 10 minutes. vinegar to kill bacteria and alcohol can help dry the ear out. Have you tried anything like that? I did it and my ear felt better for a while. still swollen though.

  • Never tried that as was told to keep it dry . When my parotid was swollen it went up round ear as well . I had dye put in and scan which actually helped the blockage , that was with a dental surgeon

  • Will the ENT not do anything for the inner ear problem causing you vertigo?

  • Said it was an inner ear infection that probably caused it . It has settled well but still keep tablets handy as can reoccur . Im still left with other problems with full ear . I hope your settled down as very annoying and can affect sleep

  • I too have vertigo at times. With me it is all related to the left hand ear, parotid gland and muscles around the neck which then seem to stuff up my top vertebrae around the neck. I went to my chiropractor twice and she sorted the virtego. I have to watch the muscles around that jaw and neck area as this triggers the dizzies for me at least. Can't do massage any more but do tend to press on the really sore bits for short periods and that also seems to help.

  • My Rheumatologist told me to keep a check on my Lymphnoids because when you have Sjogrens you are at a higher risk to develop Lymphoma. He said if my Lymphnoids ever seemed enlarged to contact him quickly. Not trying to worry anyone but it is good to be informed.

  • Yes I contacted my Rheumatologist and told her about it because I also had that concern. She said I would have more than one swollen if it were Lymphoma so not to worry too much. I have an apt with ENT today so hopefully I get some answer and resolve the problem. thank you for your suggestion. I like to cover all possibilities!

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