Tinnitus anyone?

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For those of you with ear and hearing issues with GPA/Wegener’s, do you have Tinnitus also? If so, have you found any relief?

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  • Posted

    Have had WG for nearly 13 years and for the last 8 have had tinnitus.  Haven't found anything to help with it so just learned to live with it.  Sorry. but good luck.

     

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  • Posted

    Hi, I had incredible and unexplained pain in my ears prior to being diagnosed. Eventuallyvwirh flyid backing up I had perm vent tubes inserted (adult grommets) and this solved all issues.

    Five years later one of the tubes came out and I got bad tinnitus and deafness. Had vent tubes replaced and issue some solved.

    ENT surgeons have no idea why the vent tubes work, but they do.

    Hope this helps!

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    • Posted

      This helps a lot, thanks. I was being seen by an ENT prior to my dx for fluid.  We were to the point of putting tubes in when i got sick and spent 31 days in the hospital and diagnosed with GPA/Wegener’s.  The tinnitus eased a bit after all the steroids i was given, but is now back and getting progressively worse.  I see my ENT in a couple of weeks and will mention.  But, oddly enough...fluid is only an occasional issue now. So, not sure if putting in tubes would help the tinnitus.  My hearing is getting worse also, so i am going to ask about tubes anyway.  I’m to the point of trying anything at this point. Thanks for your response.
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    • Posted

      Hi. I was really interested to read your reply as I am waiting to have long term grommets inserted at the moment (I take it they are as you described adult grommets).  I have had three lots of normal ones but they only lasted on average 6/7 months and I have been managing with just hearing aides now for about a year.

      It sounds like you have been very happy with your grommets but am interested to know if you have had any bad side effects at all, like infections, as one of the doctors did warn me that some people are prone to this problem after this type of grommet.

      One other thing I wanted to ask is have you found it necessary to keep water out of your ears with this type of grommet?

      I look forward to hearing from you.

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    • Posted

      Hi, ref your queries, ive had zero infections since premie ventilation tubes inserted about 8 years ago. These are what I call adult grommets. I have had an ENT look at them every year to 18 months to check positioning and clear any crusty wax etc which is quick and pain free. 

      You can't scuba dive with these tubes and when swimming need to take care on turns as sudden water pressure changes causes discomfort. That said I can swim a mile of backstroke/breaststroke but front crawl can play the ears up, due to the rotation.  It's a small price to pay for no tinnitus or pain/deafness.

      Basically normal showering and bathing is fine.

      Hope this helps.

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    • Posted

      The only other point to make is that when I had to have the tubes replaced (one had come out and the other was old) the operation didn't work on one ear and I was still deaf in that ear.

      The ENT then used a different brand with a slightly different mechanism on the failed ear which fixed the problem. He said sometimes it's a bit of trial and error to get the best fit. Since when no problems.

      My message is don't give up if the first solution doesn't work 100% as these vent tubes come in different forms, which suit some better than others. Be pushy to avoid the "do nothing" option.

      Good luck😊👍

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    • Posted

      Yep I had a similar "I'll try anything" period as the pain in my ears was unbearable. ENTs do not really understand how or why the tubes work but for me they have been a transformation.

      Good luck

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    • Posted

      You can swim a mile? Amazing! I can barely walk half a football field. I have really gotten down this year. I spent all summer inside because I was weak and couldn't stand the heat. I have had reoccurring sinuses all year, and chronic broncitus. I'm hoping for a better year. Bless you.

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    • Posted

      Hi. Thanks so much for your replies.  You have given me a lot of encouragement to get this procedure done asap and actually had an appointment through yesterday to go for a pre op assessment in a few weeks so hopefully I won't have to wait much longer.  I am really looking forward to being able to fly again as I have been advised the pressure in my ears would be too much until I have tubes fitted. (incidentally I was told the type I am having are T tubes - hope they will work as well as yours).

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  • Posted

    I have a lot of problems with my sinuses and ears. I can here my pulse beating in my left ear.  It sounds like distant drums. I have got up at night to see if it's a noise. It's very irritating. They have over-the-counter meds that might help you. Bless you.

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  • Posted

    Well, tubes have been in a little over a month and i am not impressed.  I can’t hear low tones, so music sounds very strange. They haven’t helped the Tinnitus at all so far. My ENT wants me to give them a little while longer to work before taking them out.  I’ll update here what we decide.
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  • Posted

    Hi everyone.  I have had a Wegs diagnosis since 2010.  About 2 years ago my hearing in both ears dropped significantly as well as a constant low grade ringing.  My ENT put tubes in my ears, and it worked for only about 6 months.  Then all of the same problems came back.  He told me the hearing problem was due to the collapsing of my Eustation tubes (sp?).  I am going to go back and see him, but am very afraid that the hearing loss is permanent.  For those that have the "adult grommets" put in, I would love to hear more as this may be an option for me.  Thanks to all who contribute to this community.  

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  • Posted

    I have had Tinnitus since 1971, I now have granulomatosis with polyaniitis and my Tinnitus has gotten worst, I now have it 24/7 for the last 47 years I have search for a way to get rid of it and never found relief, the over the counter drugs for Tinnitus do not work for me.  My way of living with it, is not to be around loud noise, I do not listen to TV, I keep it on mute and read closed captioning, I stay away from concerts or any loud music.  Try to keep your life as quiet as possible that may help as it does me.
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