Has anybody ever had issues with lupus/sjogrens in their ears? I caught a cold and mucus has settled in my Eustachian tubes or something and they have been blocked now for over 15 months. I have so much fullness and pressure in both ears and I have lost a lot of my hearing. Prednisone hasn't helped. Nothing is helping. I'm going out of my mind from the stress and anxiety it is causing me. No Dr. can tell me what is happening and there are no good tests to show anything. My theory is that the Sjogrens has destroyed all my moisture and oil producing glands in my ears and the thick rubbery mucus can't thin out and won't dry up. It's agony and I feel so down that there is no help to get relief so I have to suffer with this and not even know why. Anybody else ever had a problem like this or know of anyone who has?
Lupus and Sjogrens issue: Has anybody ever had... - LUPUS UK
Lupus and Sjogrens issue
Hi. Did you write about this not long ago? The doctor s have lost their minds for thi to go on so long. What tests have you had? You need a specialist Ent WNT who knows how to remove the debris and possibly infection Have use of one arm right now sorry for typos. When I was a kid I suffered bad ear infection anb doctor literally pulled debris out with a metal instrument goes to show they did what they had to. I’m sorry don’t do that yourself Mm
So far all I've had is 1 cat scan of the sinuses and 2 cat scans of the temporal bone. Of course, all 3 scans looked normal in their report. This is why the drs. have not taken me seriously and it is just getting progressively worse. Also my mucus /debris is in the Eustachian tubes and is not accessible to remove. So far I have seen 5 ENT's. Right now I have just finished a course of antibiotics.
Hi Nanosaint,
I thought on reading the title I was going to be able to help you. I have very dry ear canals & the itching was driving me insane!
Your problem is different though. You have my sympathy. It sounds awful 😞. It might be eustachian tube dysfunction which can develop after a cold. I found this online with some things to try. Failing that can you get an ENT referral?
chelwest.nhs.uk/your-visit/...
Take care,
Sarah x
As I replied to Mrs.Marigold, I have seen 5 ENT's. Every Dr. thinks no big deal and blows me off since my scans have all come back normal. I think they are stumped and have never seen anything like it so they don't want to touch my case. I really have never been given good, solid medical advise from any of them regarding what to do what not to do. Its just come back if you have any more problems. So mad at them for letting me get to this worsening place. I feel I am going to lose my hearing completely because of this.
Hi Sarah. A reply from another Sarah. Just to say I have very dry ears as well. They drive me mad too. I have very little ear wax, but I have near continuous, white, dry flakes that built up scab like, unless a clean them out each day.
Have you ever been told what you dry ears are about?
Thanks, Sarah
Hi Sarah.
I've never found out what is causing my dry ears, although I know dry ears are a symptom of Sjogrens & I have very dry eyes & mouth (Sicca syndrome) so I've assumed that's what's causing it.
I also produce virtually no ear wax. I'm using Miracell ProEar drops which really helped with the internal itch. Bought these online. For the dry flaky ear canal I'm using olive oil on a cotton bub which has worked quite well.
Sarah x
I have no wax in my ears either I do get slight itching in the ear but never that bad . But hubby does complain that my itch would course my ear to pop. I would reply back ,to him I am already deaf in that ear😅😂.. So , yes , I was diagnosed with Sjögren's recently with my eyes as I told them I have very dry eyes, mouth , and nose but never realised about the ear issue until now (today's discussion). My eyes has always been dry and painful. I have had wax in my ears at all . And I wear a hearing aid my aid is always clean. No wax 🤷.
My naturopath told me to use coconut oil because if it's antibacterial and antifungal properties. She did not want me to put drops of oil in my ears. I think it's because it has nowhere to go.
Thank you Sarah.I am definitely going to try out those drops.
I sometimes use olive or castor oil to help tame those flakes too.
All the best, Sarah x
Hi Nanosaint,
I have UCTD and as far as I know do not have Sjögren’s but have had many issues with my ears over 20 years and ent are sure it’s my connective tissue problems. I wear hearing aids but my hearing fluctuates with the illness and I get dizziness but that could be my blurred peripheral vision. I see ent every few months for suction but last year I had Eustachian tube dysfunction in one ear and it blocked last year and my hearing aid couldn’t work with it. On the advice of my audiologist I bought an Otovent balloon thing for glue ear. You blow into a ballon from your nose! I also had to do steam inhalation twice a day. I’m having trouble remembering how I got rid of it but I believe after this treatment he managed to suction it out. I buy my hearing aids privately as in my part of Surrey they only fund ones like bricks for my level of hearing. The good thing about buying them is I’m seen every few months. ENT I see on nhs.
Hope this helps and you get some relief soon
I also have connective tissue disorder on top of everything else. I am being repeatedly told that there is no fluid behind the ear drum so there is nothing to suction out. I wish it was glue ear so SOMETHING could be done. I think this is all being caused because the Sjogrens has destroyed my oil and moisture producing glands so what's in there is stuck in there for good. I am beside myself with panic because if there is no help and this just keeps getting worse because of more mucus buildup on top of what is already there, will it move up to my brain? Will I go completely deaf? Will I develop meningitis? Is this going to be death by a thousand cuts? What a long-suffering way to die. I've been told it is not recommended to have an ear tube or the balloon dilation procedure because that would probably just make things worse but offer no other approaches. Have a nice day. No Dr. has any answers for me at all. I'm on my own while I suffer horribly from this worsening ongoing problem. I have tried steam but not faithfully for any length of time and I have no devices to help push air into the tubes. I guess I need to start doing that on an ongoing basis. At this point, what have I got to lose.
Good morning Nanosaint, I have Sjogrens. As a result of this, I constantly have left ear dysfunctional eustacian tube. So sorry to hear of yoour suffering, its an awful complaint which can sometimes lead to dizziness and vertigo.Like the sufferer halfwayuphill, I was advised by the practise nurse I saw, to help with the unblocking of my ears, several times a day, to try make your ears pop. I used holding my nose, take a deep breath whilst blowing up my cheeks and swallowing method. This then opens and closes the tube, to allow the drainage of mucus. Also to massage from where your jaw meets your hairline, strokes downward with firm pressure, down the jaw line in verical line, past the ear, to the bottom part of the jaw line. Altough this helped, it did not stop it happening again and again.,so I have since started taking an antihistamine every other day, during bouts, as it was relayed to me, that the ear filling was most likely as a result of allergy. Maybe dust, maybe pollen, maybe food like gluten.
With all three things, I now get relief in between periods and it generally goes quite quickly when it does appear.
Hope you get some relief soon. X
The only thing I've been doing to open up the tubes is taking a drink of water, pinching my nose, and swallowing. Sometimes I feel movement in my ears and sometimes nothing like I'm hitting a brick wall. All this panic and anxiety has caused severe blood pressure readings. The highest I've had so far once was 241/104. Three are stroke zone numbers so now I take a prn blood pressure pill which I've never had blood pressure problems in the past. I just know is that if I don't get some help to relieve this it will probably kill me in some way. Don't mean to sound melodramatic but I don't have a good feeling about this. This is a very serious and complicated problem that may not have any solution. I have done steam inhalation but sometimes I notice that can make the swelling worse because I think the rubbery dry mucus just swells like rising bread dough causing me to feel even more pressure. I just don't know what to do or not do and the drs. are no help giving me advise. I feel hopeless.
hi, I can sympathise with you so much. I have UCTD and I’ve had ear problems going on 15 years. At the moment I’m also having sinusitis every month which has a horrible effect on my ears and have lots of mucus there. It affects my hearing, my balance and gives me vertigo. I’ve finally got an ENT appt Tuesday after a year of waiting. All I can suggest is doing inhalations I have to do them regularly, I’m also on 4 different antihistamines a day (for other problems) and I think that has helped. Also the exercises to open the tube and allow stuff to drain can bring a lot of relief.
Hi Tonkie. Sorry to hear about your chronic problem. It stinks to have to be a slave to daily rituals that eat up a lot of time that you could be using to enjoy life. I haven't been faithful about doing regular steam inhalation but guess I should give that a serious try. I don't take antihistamines because it further dries me out on top of the Sjogrens doing that already. I don't suffer from seasonal allergies but will be seeing an immunologist next week to do some allergy testing. Maybe I'm allergic to some foods that I eat. I hope something shows up that can be addressed but the problem is that I didn't have ANY of these problems before I caught this evil cold. My ears were fine and I was doing ok but my whole life slid into the pit if hell when I woke up to both ears plugged on May 2nd 2023 and it just kept getting worse with each passing month. I have tried a little acupuncture, tmj ear physical therapy, and now I'm working with a naturopath I used to see years ago. We're working on a treatment plan that so far has involved a homeopathic remedy but that's on hold right now until I meet with her again because we have to tweak the right dosage and timing of the frequency of when I take it. There are so many variables and everyone can be a bit different in what works best for them . Certainly not a cookie cutter approach of one size fits all. Hope you maintain strength in your life trial. For me personally, I just hope I can hang on until the rapture!
Hey lovely sorry to hear you’re suffering so much - it’s a comfort to know I’m not alone in the exhaustion of these daily rituals. Looking after my health takes up so much time and energy these days!
Funny you said about drying you out more, I haven’t been diagnosed with Sjorgens, but I’m waking every night with a cotton mouth so bad. My eyes and mouth are dry all the time I have to drink so much, I’m actually ‘over hydrated’ on my blood tests! I was bad before the antihistamines with the drinking but now it’s worse maybe it’s them!
I really hope you manage to find some relief. And if I get any helpful information on Tuesday about ears I’ll let you know.
Toni
Would appreciate all the info you learn and I'll do the same. Sharing what we collectively learn is helpful to all. Yes, you may want to consider getting tested for Sjogrens. It's a blood test that will show two different antibodies I think it's SSA and SSB. My numbers are spiked off the page. Unfortunately, there is NO medication for this disorder! The only thing they got is meds that help produce saliva and for me they're not that helpful and the effects don't last long. May be a better response for other people.
hi I had similar problems some years ago. I saw a specialist ENT doctor. I had sinus CT scan I think it was which showed sinus disease. I had antibiotics and gunk removed from ears by specialist hoover- like instrument. This cleared the deafness. I too have sjogrens. Hope you mange to get it sorted.
My compilation is the fact that my sinus and temporal bone cat scans have all come back normal. I've tried high dose prednisone and antibiotics but they haven't helped to give me any relief at all. Since all the ENT's I've seen say there is no fluid behind the ear drum there's no gunk to be removed. That's where the complication starts. Well then, what's the problem? Which the drs. have no answer to offer me. Ugh!!! My Sjogrens must be pretty unusual if it's causing a problem most people don't manifest in this way. I think I'm stuck with this with no way of knowing if it's just going to keep getting worse or not. I feel like a ticking time bomb that's ready to go off at any moment. Very frightening place to be. Fear of the unknown is a horrifying feeling to live with. Glad to hear that you got some relief. Hope your problem never repeats itself again.
Hi Nanosaint, feeling dizzy and stuffed up in your ears is both distressing and debilitating - I know what both are like. I have had inner ear dysfunction and eustachian tube dysfunction. These may or many not be related to my lupus and sjogrens according to my ent consultant. I have found mometasone spray helpful for the eustachian tubes, this is a steroid spray on prescription which you squirt up your nose. For my inner ear difficulties, there is little that can be done, other than learning to manage it through special exercises. Interestingly though my balance is better when I wear hearing aids as is the stuffy feeling. You say that no doctor can tell you what is happening - who have you seen for this? You really do need to see an ENT specialist who can help you get to the bottom of what is happening. Hope you can get some relief and answers soon.
Hey Nanosaint. I have RA & chronic eye conditions. The last 4/5 years, i’ve been getting serious problems with my ears. I’ve had really, really bad ear infections. Had to go on antibiotics a few times. I’ve had my ears drained 4/5 times. They sucked out some awful black ‘gunk’. Then my right eardrum was perforated. Took 6 months to heal.
I’m currently going through the menopause. It can really dry everything up. Eyes, mouth, ears. (Other parts of the body!) I’ve started HRT about 5 weeks ago. It’s really helped with hot flushes. You haven’t said what sort of age you are? Have u defo got Sjogren’s? I was tested a couple of times for it. It’s come back negative. (Thank God). By the way. I thought your gp would have suggested softening your ear wax. U can get stuff over the counter. Then a specialist could drain them. 15 months is fartoo long to be putting up with that crap. It makes u feel so vulnerable when u can’t hear properly too. It affects your balance aswell. Good luck with everything. I hope u can find some relief. X
Way past menopause. That ship has sailed years ago and has sunk. I never was on any HRT but think maybe I should have been or should start if not too late. The problem is there is no gunk to be removed because the fullness is all so deeply internal in the area if my Eustachian tubes which is inaccessible. I think the tissue may be absorbing water and causing swelling. I don't know. Just trying to figure this out with no real direction or medical guidelines to go by. See why I'm panicking? No Dr. has ever dealt with this and doesn't know anymore than I do. I can't even have an exploratory procedure because it doesn't exist. There is 0 testing or imaging that would lead to some solid idea of the problem. I'll probably have to suffer with this and never know why. I'll probably go deaf in both ears given enough time. Not to mention the agony I live with because I get no relief. I definitely have Sjogrens. My Sjogrens blood work numbers are off the chain and there are NO medications for this autoimmune condition. It can do whatever it wants and can't be controlled. Glad you were able to get help to give you some relief.
Hi,
Ear problems are miserable!
I’m currently suffering with vertigo due to a left inner ear problem. I’m doing the Brandt-Daroff exercises to treat BPPV. I’m also using an Olbas inhaler nasal stick for relief from blocked sinuses and pressure, which you could try. I’m also doing steam inhalations each day, twice a day if I can. Try an anti histamine too. Drink plenty of water. I’m also having a vitamin D tablet each day. Also try boiling fresh ginger about 2cms x 2cms, in water for a few mins, let it sit to cool a bit with lid on and once cooled to a warm temperature. Strain it and then add a small amount ie less than a third of a teaspoon of fresh turmeric powder and stir. You could drink this each day. They have anti-inflammatory properties.
Go for a walk each day too as it sounds like you are getting very down. Exercise and fresh air will also help both physically and mentally.
Hope this helps, take care
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