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hearing loss anyone?

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Posted 5/14/2008 4:30 PM (GMT 0)
Hi everyone.

I was wondering if anyone out there who has been diagnosed with lupus has any hearing loss too??  If so, do you travel on airplanes?  I am asking because the last time I flew on a plane my hearing didn't return back to normal for a long time when I got off and that kinda scared me a little.  Anyways, if anyone would reply to my message I would really be happy! :)  Thanks!

Posted 5/14/2008 7:31 PM (GMT 0)
I have hearing loss and have flown a few times. I found that sudefed (old kind) helps when taken 1hr before flight and taken as directed through the flight and one dose after landing. I also make sure I have gum to chew and get some water to drink ASAP. Water intake is very important, also avoid alcohol. Beyond that I cannot offer any other advice. I rarely fly and my hearing problems are a bit different than most.
Posted 5/15/2008 12:57 AM (GMT 0)
Redrose may I ask how long those flights were that you went on?  You also mentioned that your hearing problem is different than most....can you explain a little??  Thanks for replieing to my question.  I really appreciate it. :)
Posted 5/15/2008 1:23 AM (GMT 0)
2ndPineapple--
I had hearing loss on a drug called Lasix, it's a diuretic. I had to stop taking it. If you are on that drug, you should definitely let your doc know about the hearing loss.
Posted 5/15/2008 1:26 AM (GMT 0)

cured4real,

I am not on Lasix, but I have been looking online and doing some searching and found that someone on Lisinopril had hearing loss from it and I am on that too.  So I will mention it to my Doc and ask him to get off of it next time I go in and see if that helps!  Thanks :)

Posted 5/15/2008 2:03 AM (GMT 0)
I had 1 flight that I had a 4 hour layover which is the only one I took more than two doses of sudafed, the actual flight time has never been more than whatever it takes to go from Tacoma Washington to Detroit Michigan (usually much shorter flights). My hearing loss level varies with some days my hearing being so bad I can barely hear and other days I can hear better than most people (hyper sensetive to sound). I get vertigo like symptoms and hear a roaring noise in my head on really bad days. I gave up seeing ENT doctors about it because they act like I am crazy.
Posted 5/15/2008 4:54 AM (GMT 0)
redrose77,

ENT doctors..........are you talking about ear, nose and throat doctors??  That's who I was thinking of going to next.  My rheumy didn't really know what to do about it and I saw a hearing doctor and he suggested that I try an ear, nose and throat doctor. I know what you mean about how some days you hear better than others.  I explained that to the hearing/ear doctor....whatever it is they're called, but anyways, he knew exactly what I was talking about.  If I remember right I think there was even a name for it.  What happened was I went to the mall and there was a sign out that said "free hearing test"  so I actually went in and did it.  After the hearing test it was apparent to me that the Doc there was trying to sell hearing aids, but at least he knew what I was talking about though.....(the hearing better and worse at different times.)

Posted 5/15/2008 8:56 AM (GMT 0)
yep Ear nose and throat. I can say my rheumy threw out the name ménière when I described my symptoms to her. It is an autoimmune condition that affects the fluid inside the ear. I will have to break down and try again to get someone to listen and help because my hearing is getting worse over time and I have to turn the TV up more and more lately with fewer and fewer days when I am hyper sensitive to sound.
Posted 5/15/2008 10:48 PM (GMT 0)
redrose77,

The Doc that gave me the hearing test did tell me that if I didn't get a hearing aid my hearing would get worse over time.....slowly, but surely.  He said a hearing aid wouldn't bring my hearing back, but it would stop the loss of hearing right where it was currently at so that it didn't get worse.  Sad thing is that insurance companies don't cover those things and they cost a couple grand almost!!  Yeah, I wouldn't be surprised if it did have anything to do with that meniere you're talking about.  There were a few times when I was just sitting and some liquid would come out of my ear, but I wouldn't know what it as from!!  What do you know about meniere?  If you don't mind taking the time to share?

Posted 5/15/2008 11:07 PM (GMT 0)
My hearing actually fluctuates -- I hear less when I'm flaring, but hearing gets better again when I'm not flaring. Sometimes I can tell the difference in just 2-3 days -- sometimes it changes just because I've gotten excessively tired & rundown. Haven't been brave enough to actually see the hearing dr yet...
Posted 5/16/2008 4:43 AM (GMT 0)

Hi Lynwood! :)

Now I know I am not alone on this.  How long have you had hearing problems and have you traveled on the plane since it started?? 

Nice to meet you by the way.

Posted 5/16/2008 1:06 PM (GMT 0)

Hi,

I have sjogrens (sp), liveda redicu..sorry i'm not sure of the spelling. They are currently running tests for lupus, Gordes syndrome and a few others.....

I lost almost all of my hearing at age 26 , while pregnant It wasnt until i saw your posts that i recall telling a doctor about 7 yrs ago that fluid came out of my ears (which he wrongfully thought was bath water). so much for making them understand!

Now however, after wearing hearing aids for overr 20yrs, i can  now hear in my left ear? So yes! your hearing can flucuate. Unfortunately mine came back when this new type of autoimmune process began (the one they are checking for now).

I only have about 15 percent of hearing left. I simply went to a hearing doctor and did the standard tests......it will show if you have any diff in hearing!...i never went to an ent, and from what ive heard from experience with family, they've never been a great help. They can put you in a machine , shake you up and then type: vertigo on your records, but then again ,  we already know we have that...

I would think the fluid probs from S's syndrome seems like a logical thing. Sudafed can be a nono as it is drying. I saw this on my S's pamphlet from Rheumy at Cleveland Clinic this past weekend. (not  saying it didnt work).

I fly on long flights and ive experienced no problems (flights up to 12 hrs in length). Fluid intake is important as is getting up every few hrs to move around to avoid potential blood clots (happens more often than most think).

I feel badly for those of you who experience these things. The person who mentioned hitting walls with shoulders...might need to have a neuro test that , it can be realted to other things than vertigo..

hope all feel better soon!

k

Posted 5/16/2008 1:31 PM (GMT 0)

Kiera,

Thanks your post!  That really helped a lot :-) .  I feel more at peace now and kick back and relax scool .  Thanks a bunch.  I hope to see ya around more here.  Take care!

All of you have been a great help with everything.   Thank you all.  Yippee :-)

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