Sorry this goes on a bit. Along with my UCTD with systemic sclerosis gut problems I’ve developed, I’ve had hearing problems for years. I’ve never really thought it could be another autoimmune problem but recently I couldn’t hear my own voice. I wear hearing aids and have just got new ones and thought it was something to do with me getting used to the new technology (they are Bluetooth with an ap etc). I went back to my audiologist and he examined my ears and said I had glue ear. This rang bells (hah! No pun intended). My old audiologist found this a few years ago and referred me to ENT. They wanted to do an MRI which I hate as claustrophobic and turned down. This time my audiologist sent me to my gp to get steroid drops and buy a balloon Otovent. He wrote on the form I have ET dysfunction. I tried the gadget and drops but oh boy, I got worse over three days. I nearly passed out the first time trying to inflate the balloon and had constant head/ear/neck ache along with dizzyness and nausea. Has anyone on this forum tried this? I’m now beginning to wonder if it’s a connective tissue problem? I am moderately deaf and my Mother went deaf in her 70’s but I did in my 50’s. Also I’ve noticed sometimes my hearing seems to get louder especially when my SIBO is starting. I have narrow E tubes (can’t remember the name). I’ve looked up autoimmune ear problems and I have all the symptoms, especially fluctuating heating. Wondered if I should have the mri and possibly ask to be referred to the ent hospital in London. To confuse the issue I’m also starting antibiotics for SIBO & a uti. As I’m sure some of you know you go dizzy with that. I know one thing, it’s rather frustrating as I’ve bought private hearing aids to find I’m still having problems. Any advise would be welcome!
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I can’t offer advice about your hearing, but I’ve read your message and I would personally take up the offer of the MRI. They’re offered when it will best help make a diagnosis. It may rule in/rule out conditions and will then inform the treatment that may help you.
I know MRI’s are noisy and unpleasant - ask for an eye mask and earplugs and let the nurse know you are claustrophobic, they’ll help you along. There are meditation apps that are free to use that teach breathing exercises, so you can control your breathing so you don’t panic too - which may also be worth a try.
I’m sure others with more👂knowledge will be along to help you.
Thank you Sarafied. I think you are right and I will ask for an mri. I thought they were being over fussy last time. Of course we are in a different climate now in the nhs and goodness knows how long I will wait for it !
I agree get the mri to see what's going on. They give you headphones now and play music if you are able to hear it. It made the experience easier for me last time. A referral to a specialist hospital is always a good idea with complex cases.
Yes, it could be a wait but it’ll be worth it in the end. The NHS don’t offer an MRI out freely, so they must think it’ll help them work out what’s happening (or know what it isn’t!). Definitely go for it. Good luck and keep us posted ✨
Hello, I also have this started Oct 2022, after a few telephone appointments the GP decided I have menuires disease which is also autoimmune😞 I have had scans and currently on medication and have audiologist appointment this month but can empathise as it’s challenging, I am currently following a group on FB which has a free programme which I am finding useful.( only just joined here so unsure if I am permitted to share that group) good luck with scan and the positive is it will help rule things out which is always reassuring
Thank you Naladog, yes I take probiotics and make my own 24 hour yoghurt. Funnily enough my gastroenterologist suggested I don’t take these while on Rifaximin so it can eradicate the bacteria well. It seemed to work- well for a few weeks as unable to do without antibiotics for long. I’m not sure I could do that with other antibiotics. Haven’t tried yet.
Yes I follow a modified FODMAP diet but very difficult as I’ve lost a lot of weight. I take pineapple as natural enzyme before breakfast.
Hi! I have had sensorineural hearing loss for a while. At first my rheumatologist was convinced it was from the plaquenil and took me off of it. That caused major problems - a long story. I went to the ENT and he felt that it was more likely from lupus itself. At that time, from the hearing tests, he felt that hearing aids would not help. Then, this December, I had to have an MRI of my brain and mastoid effusion showed up. Then, a month later, I lost hearing in my left ear. I saw the ENT a few weeks ago and I have fluid behind the eardrum which as far as I know, I have not had an ear infection. Currently, I am using a prescribed nasal spray to see if they would help. Later this month, if that hasn't helped, which so far it has not, he will drill the eardrum to release the fluid and see if that helps. Along with the hearing loss, I have constant pulsitile tinnitus and other strange sounds in the left ear. I realize this is different than what you are experiencing. I did find information on lupus affecting the ear actually calling it autoimmune ear disease so I do feel that my sensorineural loss of hearing in both ears and now the total loss in the left ear may be the explanation.
I understand your reluctance to getting an MRI, but it may give you some answers. Wishing you all the best.
This is really interesting Pumpkin2009. Also no one seems to have had the balloon inflation treatment recommended. I wonder if it’s quite new? I’m going to contact the gp too to see if it’s worth trying the steroid ear drops on their own. I have to anyway to get referred for mri. I wonder if the steroid ear drops are the same as your drops as you can use them in your nose. The other thing is I had Covid three weeks ago and I hear that can cause long term problems with your ears! I definitely have had problems for years though although worse recently. Sorry your tinnitus is so bad. Not nice.
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