Eustachian tube disfunction and Sjogren's? Anyone have this and any useful tips on dealing with it?

[gemim]

Hello All, wondering if you can help me? I have SLE & Sjogren's. Have had the dry eyes for several years and now in the past few months developed a dry mouth and blocked left ear & nostril. Also have tingling & numbness on the left side of the face which is being investigated - maybe trigreminal neuralgia caused by Sjogren's. Anyway, this blocked ear is really annoying me. I have had wax removed by microsuction - very little wax but lots of dry skin - but that did not take away this blocked feeling /fullness. Have read about Eustachian tube dysfunction and tried various massage techniques and manoeuvres but nothing has helped so far. My rheumatologist may refer me to ENT but that could take a long time! Any suggestions of how to improve things in the meantime?

Gemin

[Jmiller623]

I’ve been in your shoes. Tingling and all.

Suggestions that work for me and I am also blocked horribly on the left. I’ve seen ENT twice to no avail.

Try warm nasal saline rinses. I use neilmed. I then use Flonase, nasalcrom and astelin nose sprays. I also take fexofenidine twice a day.

This has helped clear out my sinus which inevitably helped with my eustachian tube. I do get fluid behind the ear and have bled from my canal from dry skin. All witnessed by my PCP who found these things and I had no knowledge I even had problems. But it all fits because my balance and vision are awful. My whole head is a hot mess.

I feel these symptoms are MCAS related or something. It feels like my whole nose/sinus is blocked on the left all the time in addition to the fact that my nostril closes off with minimal inhalation.

[gemim in reply to Jmiller623]

Thanks for your suggestions. Seems like a lot of medication for minimal results. Sorry to hear that you have been dealing with this for quite a while. It seems like your symptoms are really much worse than mine. I am not aware of having sinus trouble - never have had in the past and don't tend to have allergies either. I feel like the Sjogren's has reduced secretions, everything is dry and perhaps the Eustachian tube is stuck down on itself - maybe even damaged. Hope to get something to loosen the secretions that I do have (carbocisteine has been suggested). Given your experience with ENT, my expectations have been reduced in terms of any help I can get there! This may be something I have to learn to live with - like a lot of our symptoms!Thanks again.

Gemin

[Davinal1-UK]

Good morning, I have an ongoing glue ear problem like yourself. I tend to go round in circles of its okay, my sinus hurt, my ears are bad, they release, it's okay. So what I tend to do when they arebad is head to the doctor who as JMiller recommends to, is nasal inhalations or saline flushes. Also get some Clarityn tablets, for hay-fever, or allergies, some steroid nasal spray, and at home, I tend to get on to a course of Benyllin. This is my cure all for the ears and sinus. It contains something that thins mucus, so it helps shift things. Within five days I start feeling movement, within seven days I get start of a nasal drip and by ten days my ears are running too. I hope you are able to get sorted as it is a nightmare with feeling off kilter all of the time.

P.s. sorry I am unable to give you the active ingredients.

[gemim in reply to Davinal1-UK]

Thanks for sharing your experience and the products which have helped. Not sure if my ear problem is coming from my sinuses or from sticky secretions due to Sjogren's. Would like to get a doctor to examine me and pinpoint the problem if possible. Actually getting a face to face appointment with a GP, ENT consultant or any doctor is a challenge in itself right now as we all know!Appreciate your help. Trust your own glue ear is not too annoying at the moment.

Gemin