I've not been diagnosed, but have been on the site to get advice for dry sore eyes and mouth. I had an eye test today and was told the eye drops my GP has prescribed weren't any good, so has given me some suggestions to take back to him! I'm also having a lot of problems as I have Eagles syndrome, so have a lot of neck, shoulder and mouth issues. One problem which I have and seems to be common for ES is a constant pain and feeling of fullness in my ears- like the pressure you get when flying, and tinnitus. Some-one on the ES site suggested that it could be dry ears related to SS. I was wondering if any of you have found this ear problem? Thinking back, I've not had any blocked ears with wax (yummy subject, sorry!) like I used to in the past.
Sorry to hear about the Eagles Syndrome! For the members, here is a link explaining it
I'll feature this for you to see if we have anyone here with similar problems, I surely hope you can get some solid answers and substantial relief!
Wishing you well,
Sorry to here of your struggle.
If it helps, I lost hearing completely on my right ear and had a horribly loud constant roar in my ear. I began taking 1 tablespoons of (yummy) cod liver oil 3 times a day. Within two weeks it begun to subside. I now try to take a dose a day. I’m starting to develop oily wax again, yeah!!! Oh the simple joys…
Hi Jules, I have not been diagnosed with Sjogren's but I have Undifferentiated Connective Tissue Disease with Sjogren's Features. I have very similar ear symptoms as what you describe. When I have pushed myself a bit far with activity, one of my flare symptoms is that my left ear blocks and feels full, like pressure when flying as you say. I also occasionally, for what seems like no reason, will get tinnitus and my ears block and it slightly affects my balance.
I spoke to my rheumatologist about this and he said that it is directly related to the "Sjogren's features" symptom process. He explained that what's happening is the moisture in my ears' Eustachian tubes all dries up, and this causes them to feel blocked even though there is no wax that I can extract. It's a lack of moisture, this also causes the reverberation of sounds and balance issues when they are blocked, because sounds are essentially echoing off dry ear canal walls rather than lubricated ones.
It's certainly an annoying symptom but unfortunately there was nothing he could really recommend to help it. Because my ear issues usually stem from over-exertion, I just take it as a sign that I need to reign back my activity and rest, and then it usually passes. Seeing as you describe yours as constant though, if you haven't mentioned this to your doctor yet I recommend doing so as they might be able to prescribe something.
I hope this has been helpful for you.
Thanks Kaz, that's helpful. I was diagnosed with ES from a panoramic xray, Dr feeling the styloids and from symptoms, but he recently said that ES can't be causing all the pain I have (!! clearly he's knowledgeable- not!!) so have just had an MRI and am waiting for the results. I know it's not the best for showing ES but they're looking for other damage to my neck from an old injury years age too. I do have pain like the GPN in throat and ear, have always presumed that it's from the ES. I'm seeing my GP soon to ask about eye drops so will push for other tests and hopefully a rheumy referral, but British GP's are so reluctant to spend the money...!
I have had shingles twice this year on my left ear and ever since severe pain and popping in that same ear. The ENT and my pcp have no idea why. It has been frustrating!
That sounds annoying, Allison- you have enough else to deal with. Shingles can be brought on by stress, and you've had a hard time. It can affect nerves, so that would probably be why it's so painful, but the popping's weird.
I'd forgotten about this discussion... I've since had surgery for the ES one side, and most of the ear fullness has gone that side now, so that was down to the ES. My balance and dizziness issues have completely gone now too! It's not helped the nerve pain I get though, so I'm presuming it's perhaps caused permanent damage, although I know nerves can take a long while to heal. I've been prescribed amitriptyline for that, which helps. The MRI I had showed a slipped disc C5-C6, so that adds to the neck pain...
That's where I have my main issue is what symptoms are Sjogren's related or other or both! I have had war isues prior to the 2 shingles break outs. I had them do a ultrasounds and it revealed inflammation with cysts/tumors. They tumors are kinda where I have pain, but my pcp said they wouldn't cause the pain. I have no idea, I just know it's so annoying. I went to my opthalmologist today who diagnosed me with sjogren's and he is referring me to a physician specializing in just diseases of the eyes. That's where my main issue is, so it will be interesting to see what she has to say about my whole issue. My pcp and eye Dr want me to go to a clinic that is half way across the US. They would have me inpatient for 3 days and I would pretty much see every specialist and at the end they determine the final diagnoses. That would be a great thing, but cost wise it's not! I do want to look into this eagles syndrome though
Jules, I do not know if you are still around to receive this but it is worth a try. I have had Sjogren’s Syndrome for 47 years, the slow insidious type. In June 2015 the left ear problem I had been having on and off, a feeling of pressure, became constant with autophony (hearing one’s own voice rumbling around inside one’s head, hearing chewing and breathing loudly) when upright. I diagnosed it that weekend from the Internet but it has taken almost two years to get an ENT diagnosis and I got that by finding an Audiologist who would do the specific test for this. The audiologist said she had never been asked to do this test before. I have a patulous Eustachian tube - the tube is stuck in the open position. Strangely, websites that talk of this condition never list Sjogren’s as a possible cause. I have put posts on other forums and still not found Sjogren’s sufferers with this condition. I am wondering if this is what you are experiencing. Many of those who have this condition experience it only when doing heavy exercise. There is a feeling of pressure/blockage whether the Eustachian tube is stuck open or stuck closed, hence frequent misdiagnosis.
Jules is still around. That’s really interesting, your issue with your hearing. I know that it’s easy to think of autoimmune disease (s) as related to everything that happens in our bodies. While there are tons of connections, and autoimmune disease is a risk factor listed in many other conditions, not everything is related.
I hope that you’re experiencing this as less cause for concern, even though having an answer doesn’t necessarily change the condition. Sometimes an answer can set our minds at ease.
Well done you for the self-diagnosis! I’ve never heard of this, is there any treatment for it, or do you have to live with it?
My ear problem has improved loads, and I had a second surgery for the ES a year ago, so mine was down to the ES, although they are still drier than they used to be. But thanks for the info!
Thank you for replying and for the commendation; it made me feel good! It’s quite rare and no, there is really nothing much to be done for it or, as the last ENT said, there are a number of things which means none of them really work and some are downright dangerous. He told me to gain weight (in some cases it occurs because of loss of fat around the Eustachian tube) but while I’m not overweight neither am I thin. I thought Sjogren’s would be rather an obvious cause if it can occur because the lining of the Eustachian tube (half mucus membrane) dries out. At least the symptoms go away when I lie down (venous congestion closes the Eustachian tube) so that makes it easier to bear. I had to Google ES - not heard of that one either - but am so glad your surgery has made your symptoms better. Cheers from Australia.
I have the same issue too! I hadn’t talked to my rheumy because I didn’t know if it was SS related or not. OK. Something else to add to the list when I see him. I really hate dealing with this all of the time.