dizzygirl Posted February 16, 2007 Report Share Posted February 16, 2007 i was wondering if any of you experience hearing loss? i have noticed that the past few months i have had hearing loss ..loss big time in my right ears and now a significant loss in my left ear..... and last month after my last Iv infusion.. i had an episode of brain swelling.. and once it subsided my hearing is like even more cruddier then it was before.. and my ears are very noisey lots of high pitched stuff... and other weird things.. well my point is since then my hearing is getting worse...any of you experience this????im going for a ct scan of my brain here in a few weeks..as well as a full spine mri and stuff..this is driving me crazy as i cant hear well and i keep hearing things wrong.. and i say What? and huh? what'd you say?geez this stuff just never ends!!!!!!!!!oh yea and my ears itch inside like mad! i feel like there is a little buggie in my ear tickling me..too...my actual ears hurt like mad and feel weird if i lay on them my ears feel stiff... dont laugh!! they really do and i do not have an infection in them.. but there is alot of fluid always in there Quote Link to comment Share on other sites More sharing options...
Roselover Posted February 16, 2007 Report Share Posted February 16, 2007 Yes...yes... and YES! I've just recently had the same problem!!!! After about 7 weeks, my hearing seemed to get better and then worse and then better........I was sent to a specialist who took great interest in my dysautonomia... he thinks he as another patient with it and I gave him the dinet and ndrf websites and he looked them up and learned a lot! Yeah another doc who is now educating himself!! But I digress... sorryI had a hearing test and was told I had NOT lost hearing! I was very surprised as I had experienced the same symptoms you mention and couldn't even hear a conversation between my husband and daughter at a distance I would normally hear. But he said he was sure it had to do with my neurological system not communicating correctly as it does with other parts of my body. So I feel like I can't hear, but I'm not losing hearing. I don't like the first part when it flares... but I am so comforted that it's not an actual hearing loss....But he put me through a battery of tests for the dizziness, unbalance and vertigo. They showed that I have some damamge to my left inner ear which is causing all of that. He examined a recent MRI I had and could find no reason for the damage and said he suspects some kind of circulation disturbance (which we all know we have LOL) and that somehow it caused this damage. However, I also have weakenss on my whole left side... so don't know how all that plays in.....So there you go... probably more than you needed to know, but at least you know you're not alone in the symptom and there are some things they can look at to confirm whether it's a true hearing loss or another neurological issue.Do you have a feeling of fullness...like your at a high altitude too? I get that too. He told me he thinks that much of this and the tinnitus (loud buzzing, whirring, ringing etc) is due to muscle strain.If you have any questions... ask away... I'll share as much as I possibly can. Oh... he was an Otologist/Neurotolgist/Skull Base Surgery Specialist.~Roselover Quote Link to comment Share on other sites More sharing options...
ellepee Posted February 16, 2007 Report Share Posted February 16, 2007 I've been having that feeling of fullness in my head recently. It's so uncomfortable. I also often feel pressure when I breath, like altitude sickness (and I live in Boston?) And several times per day I lose hearing breifly or it goes dull for a bit- this has been going on for a couple years.Keep me posted on what you find out about this stuff,~Elle Quote Link to comment Share on other sites More sharing options...
Guest sonotech Posted February 16, 2007 Report Share Posted February 16, 2007 Wow....this is interesting! I have recently (within the last 6-8 months or so) gone nearly completely deaf in my right ear. I have frequent "ringing" in my ears and also have pain, occasionally, when sleeping on my ears. I am actually going for another audio scan on monday to evaluate the current extent of my hearing loss....it has gotten worse and worse.I think I have some hearing loss in my left ear also, but not nearly as bad as the right (so far). I worry that I will lose my hearing completely!! That would be scary!My hearing loss affects me a great deal. I can't talk on the phone using my rt ear and even with my lt ear I still have trouble hearing sometimes and I feel bad saying "WHAT?" all the time. When I lay on my lt side with my "good ear" in the pillow, I can't hear the tv AT ALL or even my oxygen machine which is really loud! I even woke up one night thinking my O2 machine stopped working because I couldn't hear it and when I sat up I realized it WAS working. I drive my husband crazy with how loud I put the tv.You certainly aren't alone on THIS subject. By the way, my doctor said that inadequate blood flow can cause hearing loss so HE thinks it is related to the dysautonomia......but who knows. Quote Link to comment Share on other sites More sharing options...
yogini Posted February 16, 2007 Report Share Posted February 16, 2007 I had hearing loss once last fall when I was at the gym. I felt funny and looked down and my HR was 190. I agree with sonotech. I think the blood went from my ears in an effort to get blood to my brain. Needless to say, I lay down very quickly as soon as I realized what was going on! Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted February 19, 2007 Author Report Share Posted February 19, 2007 wow im glad i asked now i dont feel so alone .. in my "what'd you say?" or HUH"S?? all the time.. which is driving my bf totally nuts.. ut OH WELLL!soembody else suggested to me tht it could be the whole potsy mess causing the hearing things as well... it continues to amaze the hebbie jeeebies out me how much this affects everything in our potsy...some of it is down right weird!if i find anything out i will let ya all know.. thanks a bunch Quote Link to comment Share on other sites More sharing options...
persephone Posted February 19, 2007 Report Share Posted February 19, 2007 Hi Dizz! The ringing might be tinnitus- I get this too- and sometimes it really is loud, drowning out other stuff,But I think it can be a part of presyncope to get ringing in the ears- like, just before you faint your ears can ring?I get it more when I'm tired- at night and in the morning.I find keeping the tv on or the radio for some background noise helps.I wonder if this could be what you have?Get better soon love!xxx Quote Link to comment Share on other sites More sharing options...
mkoven Posted February 19, 2007 Report Share Posted February 19, 2007 Hi Persephone,Are you on an anti-inflammatory, like ibuprofen or celebrex? These can be associated with ringing in the ears and ear damage. At high doses, I have problems.Michele Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted February 20, 2007 Report Share Posted February 20, 2007 Hi Linda,I don't experience hearing loss, but I wanted to send you a cyber-hug! I'm really hoping those docs of yours can figure out what's going on with you, because you've been suffering for long enough girl!BTW, did you ever make it to that appointment in NY? Hugs,Lauren Quote Link to comment Share on other sites More sharing options...
corina Posted February 20, 2007 Report Share Posted February 20, 2007 hey dizzy!!! i have that too. and like a lot of other things it comes and goes and everytime i investigate these kind of things by being tested, everything is okay (of course ).i don't go out for any further testing, i can live with the most of it (except for wetting myself and that kind of stuff) and i don't want to spend so much time in hospital and doctors telling me that they can't find anything. but that goes for ME, i can fully understand that others want to make sure what is going on. hope it will be some better soon!corina Quote Link to comment Share on other sites More sharing options...
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