Sudden Hearing loss _{Page 79 of 105}

Just an update.
I posted last Monday - 5 days after I suddenly lost all hearing in my left ear. I was feeling a little desperate and looking for someone to tell me it was going to be okay. For anyone who may read this shortly after something similar happens to them, I want you to know that I already feel a million times better. Prednisone can kick your butt and don't let anyone tell you differently. OK, so I'm deaf in the left ear - I can hear out the right. I'm already learning to ignore the tinnitus (and that icky pressury feeling) and I'm feeling much more 'myself' again, now that I'm off the steroids. I'm fortunate that I don't have a lot of dizziness or nausea. If the hearing loss seems like it is a big problem, I'll look into a BAHA hearing aid - right now I'm evaluating it in different circumstances. I have an appt with an audiologist who specializes in tinnitus coping methods, but I'm already feeling like I will get used to it - as thousands of others (including my husband) have. Anyways, just wanted to reassure anyone on Prednisone that a lot of what they might be feeling, both physically and emotionally, could impriove much after they finish the steroids. It is an adjustment to make and its scary when something so dramatic happens and no one can tell you why, but I know that I'm going to be okay. Hang in there!

Rhonda - so glad to hear that you're feeling better emotionally! That is huge. See, we knew it was the steroids! :)

Hi all,

I haven't posted for a few months and I see that there are some new SSHL cases on here. Just to let you know that I have had no further improvements since December 2008 ( 4 weeks after onset and two weeks after finishing 5 days on 40mg/day Prednisone). I am still severely deaf in my left ear in low and mid frequencies but have near normal hearing in very high frequencies (pretty useless really). Tinnitus is always there, but I really don't notice it much now and it doesn't annoy me anymore. I have got used to only hearing with one ear and I reckon I have adapted to it - with only real problems in noisey
places. I had been scared of flying again, but have recently completed a long haul flight from UK to USA with no problems at all - so that is a major step for me. Hope this helps anyone else who is just starting out on this journey.It does get better and easier to cope with.

Well I'm disappointed. At my last appointment I showed quite a bit of improvement. She did a third and final intratympanic injection and sent me on my way to return in 3 weeks.

Today it is one week later, and my 'dial tone test' where I listen to the phone in each ear pretty clearly shows that the improvement I had up until a few days ago is fading away. I'm still better than I was when this whole mess started, so my hope is that it will level out before or at the starting point and not proceed to get even worse.

Shortcake - sorry to hear about the setback in improvement. Good luck and hang in there.
Scorpiouk: thanks for the post. I am afraid about flying as well (always had trouble equalizing in the past on flights although no other ear problems before this). I'll be flying the end of next month so I'm glad to hear it went well for you and also that the whole thing has gotten easier to cope with. Thanks!

Thanks Rhonda.

Scorpiouk - did you do anything special for flying like wear earplugs or anything? When I flew (I discovered my hearing loss while away on a trip and didn't get seen until I got back) I didn't have any problems with pressure. However when I got off the plane, I felt like all the noise from the flight had left me with more tinnitis. Eventually that faded away but it took a long time. Next time I fly I will wear an earplug in that ear.

Hi, Scorpio UK

I kind of disappeared I realize. My life became very complicated recent months and I have had little energy for communicating much by any means. But, I am still very appreciative of this forum and the forthrightness of everyone contributing. Just knowing that I can participate here is a comfort. I have been afraid to check and see most of the people I know gone so I'm glad to see you Scorpio. Your hearing loss story is one of the most unique and memorable, having lost all but very high range sound in your left ear. I remember that you said that you can hear a shrieking hair dryer but not human voices! Hearing loss, especially sudden hearing loss is really hellish and I try hard not to think about it too often.

It will be a year this July 17 for me and it still blows my mind me that something so weird and awful has happened to me. I will spend the rest of my life protecting my good left ear and praying to God that nothing happens to it! I certainly understand that you would be afraid of flying even after having flown before. Like you, I pretty much am able to ignore the tinnitis at this point. Although, when I get overtired it gets bad to the point that my own voice makes my ears react with painful bursts of tinnitis in the deaf ear and hypersensitivity in the good ear. But overall I'm okay mostly. Most people probably don't know that I'm deaf in one ear. Although they might come to notice that I have to have things repeated to me if it's noisy or there is a lot of movement and conflicting noise.

Well, I am glad that you are coping Scorpio. It is sad to see that there are brand new sshl victims. It is such a rare and complicated problem that a forum like this is one of the only places sshl victims can find others who can relate and even give really good reassurance and advice. Most general practitioners probably haven't heard of sshl.

You wrote that you haven't been on this forum for a couple of months, Scorpio. It's been longer than that for me so I feel lucky to have 'run' into you. Best of luck in everything, Scorpio! Thank you for your positive and sharing attitude :-)

Sincerely, Frogs.

P.S. I feel pretty bad going back and reading the posts I have missed. I am at a point of transition (apart from my hearing)that's quite hard so I hope I'm forgiven? I noticed MarkLM dropped off the radar about the time I did. Hi to MarkLM, brokenear, Sandmanranch, Saucix, Luv2ridegal, Mimiof4, ScorpioUK (of course) and everyone. I probably will be scarcer than before but I don't think I will ever stop checking this forum from time to time, leaving one of my space monopolizing forum comments (laughing)! Thank you, everyone.

Frogs.

Hi all- I am kind of new- posting within the past month or so - low tone hearing loss that responds to prednisone (it's normal right now but I am weaning off and am at 15 mg). This is my third round of steroids and I've decided that this is it. If the loss returns again then I'm not sure what I'm going to do. My aldosterone levels normal so that angle is no longer an option. My doctor did think this was an autoimmune disorder but now he is skeptical because of the way it is behaving. MRI on friday,

Shortcake- so sorry your improvement is declining. I know what that feels like! It is a weird thing to have it come and go. I hope they figure out what's wrong.

frogs -thanks for checking back in. I've read lots of your post earlier. I hope all the other complications in your life resolve well!

suncasa - good luck. I hope this time it sticks for you. The MRI is probably a good idea. Sorry about the aldosterone levels - that was such an exciting article. Can't the doc do blood work to see if there is an autoimmune response going on? I'm still surprised he hasn't done this. What are his other ideas now that he's no longer thinking autoimmune?

Mind if I vent some more? I'm really upset right now and part of me feels I have little right to be, since there are such worse things in the world. But I realize that I feel extra upset because I was just getting used to the hearing loss as it was, and then it improved so much. I was so excited and felt so normal. No funny echos, noise sensitivity much, much better, tinnitus gone most of the time. And while I refused to say out loud that it was permanent, since I hadn't heard of many people having the shot, having improvement, and then having it go away, I cautiously assumed it would stay. Plus now that it's going again I'm getting more of the annoying side symptoms like more sensitivity, etc.

Part of me feels like I should have not asked for that 3rd shot - that I was 'greedy' and that since my hearing was so much improved I should have left it where it was and maybe it would have stayed there. I'm sure that's not rational. It's just me kicking myself.

My next appointment is not for two weeks. I'm trying to decide if I should call them or not to report this. I think I've decided that if I notice any NEW symptoms (like my high frequencies starting to go, or something that might suggest an infection like a fever) I should call, but otherwise I will keep my existing appointment. I'm not getting any more shots and I'm not going back on oral prednisone so I don't think there's anything they would do at this point. Does that seem reasonable?

Hi-
Today marks my first anniversary of SSHL. The SSHL is the same as the day I awoke to discover my loss, no worse nor better. My hearing aids are a big help, but of course it is not the same as before the loss.

As I mentioned before, I can think of many worse things that could have happened to me, so I just accept this condition and adapt as best I can.

Here's a picture of my recent visit to Bryce Canyon National Park.

(This post contains an image. To view the image, please log on.)

Shortcake

No I didn't do anything special on the flight to protect my ears. No earplugs or any sort of protection. Prior to my hearing loss, I never had any problems with flying and thankfully this still seems to be the case. Of course, my ears popped a few times on take off and landing but nothing that wasn't cleared by swallowing.The only thing that I did notice was that my tinnitus was a bit worse after all the plane noise for 11 hours, but it calmed down again after a few hours.

Frogs

I wondered where you had gone to as you hadn't posted for a while. I actually thought about you when I was in the States on holiday last few weeks, as you had said you were nervous about driving over high mountain passes to get to Lake Tahoe/Reno?, incase it upset your ears. I was in Utah and driving around Torrey - Escalante at 10000ft - but no probs with ears at all. Just a few pops which cleared ok.
You seem to be more at ease with your hearing loss and like me coming to terms with it. Like you, I'm just so glad I have good hearing in my other ear. Yes sometimes my mind would worry about what would happen if I lost my hearing in it too. But I never dwell on it as it would drive me nuts to do so. All in all -I'm quite settled with it all now and can't really complain too much now.

Brokenear - that picture looks familiar - I was in Bryce NP last week!

Hey Scorpiouk, brokenear and shortcake,

I'm so glad that you and brokenear are each having a fun summer, Scorpio! I'm a little jealous. Utah is so beautiful! I'm ashamed to say I haven't been to Bryce National Park. I've been to other places in Utah like Salt Lake City and the Wasatch (sp?) Mtn.s on the way to Rocky Mtn. NP. But the pictures I've seen of Bryce NP make me know I've really missed something. It was 12,000 ft. at Rocky Mtn. National Park in Colorado. I think the highest paved road in the U.S. runs through Rocky Mountain National Park. We were there about 8 years ago and I had no problem. But since my sshl I can't change even 500 ft. in elevation without strong pressure and popping. So, somethings really changed inside my head since the sshl. I haven't noticed anyone posting a similar experience here.

I try to remember what everyone says about the facts of their sshl. I want to create a bigger picture but there are so many variables. I wish some supersmart ENT/ Neurologist med student would take advantage of the collection of faithfully recorded sshl experiences on this forum and do research for, for instance, a Master's Degree thesis or something!

Shortcake, I want to say that I don't think you should kick yourself for being 'greedy' to regain your hearing. Hearing is such an emotional sense. From what I've learned Sight is our primary sense. We get something like 80% of our sensory information from sight. But, hearing is the communication and emotional sense. I took Psychology 101 from a really interesting professor years back. Many things this professor said in class stuck with me. One thing Dr.Sheehan said was that sound gives emotional content to our sensory experience. He said that some time when we were watching a movie we should turn the sound off and see how this is true. The sound track tells you how to feel about what you are seeing and when.

That is why you, I and most other sshl victims are terrified of losing our remaining ear and hearing. Some people say (MarkLM is one) that after their sshl they don't enjoy music as before. But, I still hear music very well with my left ear. Music can still make me cry just like it always has. Just listening to the birds at dawn in my neighborhood, as they sing so loudly, bursting with joy, talking to each other in the most persuasive notes, and even arguing, makes me feel happy. I can't imagine losing what hearing I have left. So, you took a gamble to try to get back a very precious sense. I'm just sorry it might not have worked.

Can I ask what your sshl was like? From what I've read it really sounds like you didn't lose that much hearing initially, shortcake. Your hearing loss sounds different than mine which was a classic, went to sleep hearing and woke up deaf in one ear, scenario. I know your hearing loss is very recent and the shock is still huge. As Scorpio wrote, it does get better though. The main thing is to protect the hearing you've still got and do what you have to do to rule out anything life threatening. I haven't even finished that part for myself..but that's another post. It looks like I have written enough for now.

Thank you to everyone! And, brokenear, do you have Cindy stay at a kennel when you travel? It seems like it would be hard for her that you be gone because she's a very old sweetie (Again, I love cats:-)!)

Sincerely, Frogs (Patricia)

Hi Frogs - thanks for your understanding words! It's been an emotional roller coaster - and yes, mine is quite mild! Actually compared to most on these boards, it's extremely mild. Here's what happened:

I went to a Zumba (exercise) class that was quite loud. So loud it hurt. I couldn't understand why no one else was covering their ears (now I know it's because mine are extra sensitive). I don't attribute the sshl to the class - it just made me aware that something was going on. Because after class, I had a rumbling in my right ear. Then I woke up with my ear feeling plugged and thought 'oh, I must have some congestion in my ear.' It wasn't until a couple weeks later (while on vacation! so I couldn't even go to the doctor right away) that I put the phone to my right ear and realized it sounded totally weird. All the low frequencies seemed gone - voices seemed tinny and the ring seemed very high pitched when it should have been much lower.

When I finally got to the doctor he suspected Meniere's even though I have no vertigo. My low frequencies (1000db and below) were in the only ones affected. Speech recognition and my high frequencies were still intact. Now I realize, after hearing from others, how lucky that is!! Oral steroids didn't do anything but the intratympanic shot, as you know, seemed to help at first.

My bloodwork came back with some signs that it might be autoimmune related, and my MRI showed a little something that could be an acoustic neuroma - but too small and faint to know for sure. So now I also need to do what you are doing, Frogs, and continue investigating these possible causes. I seriously hope it's not autoimmune. I also hope it's not an AN, but I have hope that if it is at least we caught it early and can watch and wait and then remove before it's too difficult.

The reason I said I felt greedy was that my audiogram showed 1K and 500db both back in the normal range. 250 was the only one low. Fully functional hearing, really.

I was actually doing great with the hearing loss portion of it - after realizing I could still hear people talking and directional hearing wasn't too bad - and then it got better and I got excited. Then when it got worse I got so sad again. But really my biggest concern is the other health issues - autoimmune or neuroma - and of course protecting the good ear.

Hi Frogs and everyone

Good to see you back - I had also stopped looking on this site as everyone seemed to disappear at the same time. Just thought I would check in after getting back from holiday and to report that flying wasn't a problem thankfully. Although every case seems to be individual. Like you, I wish some Phd student would use this source of information to carry out research on this condition. This site has got to be the best source available. I have searched the web and not found any other website with so many experiences.
You mentioned that it was important to rule out any 'serious' causes of this condition and I figure that the MRI scan and blood tests did this for me - (although I was never told what blood tests were done - they took 5 samples). I will ask when I go back to my next hearing test checkup in August - 6 MONTHS since last one. As I said before in the UK - you dont choose your specialist and stick with him/her, unless you pay a fortune to go private. You see whichever doctor is on duty on the day of your appointment. So far I haven't seen the same doctor twice, which doesn't help at all.

Shortcake - I noticed that you lost lower/mid frequencies. Similar to me, but my loss is 70-80db up to 6000hz and normal above that - in other words useless except for my hairdryer and runnning water! I'd love to know if there is a set pattern loss profile for SSHL or is it very random. All these questions, but few answers. I suppose Id love to know what caused mine - not knowing is also annoying. Something must have gone badly wrong inside my ear. But I suppose the bottom line is that I feel fit and healthy (did 3 -8 mile hikes in Utah at altitude) so I'm happy with that despite being completly deaf in my left ear.

Frogs - keep in touch when you can - your posts have always been good reading and have helped me!

Quick question for you guys - a lot of you know, I'm sure, what I mean by aural fullness - that kind of airplane-y feeling of pressure. Has anyone experienced that sensation in the good ear on a regular basis since the SSHL in the other ear? It kind of freaks me out, but since it's been there - in the good ear - on and off, but pretty consistent - since the SHL 3 weeks ago, I try not to panic over it. Drs say no reason for it. Thanks for your feedback!

Hi everyone,

I have read all the posts since I last posted. Everyone posted interesting thoughts. Scorpio, I'm not sure what all blood tests are done with regard to sshl. But I know they rule out syphilis, because syphilis can affect the brain/nervous system. They also should look at autoimmune questions like, for instance, MS. Multiple sclerosis can cause deafness as will as blindness. I still have more labwork to do because I don't really like my ENT and so haven't been back for more than a couple appt.s. I plan to see my neuro otologist to ask if he can do all of the same tests that my ENT planned to. I was tested for syphilis, along with other things, and am thrilled to say I tested negative (laughing..that'd be the day..to test pos. for syphilis! But, I guess that std is out there more nowadays.) I have other health problems and I get pretty tired of doctors. The high dose course of prednisone, after my sshl last summer, revealed that I have a thyroid problem so now I'm on a trial of Armour thyroid medicine.

Interestingly, half of all low thyroid people have some degree of hearing loss. There is a link between hypothyroidism and Meniere's as well. Which brings me to Meniere's, Shortcake. When you describe your sound hypersensitivity before you lost some low frequency hearing and had other changes in your right ear, it reminds me of me before my hearing loss. For years I had noticed that if there was a loud sound, like if at the grocery store someone dropped a wooden palate, I would literally jump, then look around and see that no-one else was so bothered nor had even noticed much. My eldest son always remarked that I played music so low that he didn't know how I enjoyed it (it would be plenty loud for me.) So, Shortcake, I am interested that you noticed sound becoming painful even before your hearing loss because that is certainly true of me.

My mom has had Meniere's half her life. She's a professor of Music so it's a serious diagnosis for her. She had a series of imaging tests done back when the Meniere's first began bothering her. The tests(cat scans back then) showed she had very scarred and shortened Eustachian tubes. She also has lupus, an autoimmune disorder. So, perhaps the scarring was due to autoimmune inflammation. She, happily, still has good hearing. But, like you, Shortcake, she has fluctuating hearing and is really sensitive to getting a head cold, for instance. She lives in Tucson, Arizona. I will call and ask her how much elevation changes bother her. I can't believe I just thought of that!

Taking all of these bits of information and putting them together I think that I have several factors that contributed ultimately to my hearing loss and a big one may be Meniere's. If you have problems with your ears and then get a virus that affects your nervous system and ears it could just add up to an sshl. I also have questions about your possible acoustic neuroma, Shortcake but think I have written enough for now!

I want to say this to Rhonda j, I have experienced weird sort of pressure switches in both ears that do freak me out more than a little. I also have the apparently unique experience (no-one else has mentioned it) of having my good ear drum sort of click painfully when I project my voice, or even just talk normally. I think whatever happened to me back last July 17, '09 affected my nervous system and my good ear as well as my deaf ear. I think those feelings are part of the hypersensitivity (hyperaccusive)thing that everyone suffers after sshl. My good ear is very good (5 decibel threshold across all frequencies, thank you God!)and despite all the weird sensations has stayed the same for almost a year now. I hope that is some comfort for you, rhonda.

Well, just pick the parts out of my very long post that apply, everyone. I guess I will try not to worry that I post long posts. I just think of so many things to write to everyone! Thank you, you guys, for being here!

Frogs.

Scorpio,

I was rereading your post and thinking about what you said about pattern of sshl hearing loss, ie. what frequencies. I don't think that there is any pattern necessarily from what I've noticed.

When people lose hearing due to old age they lose higher frequency hearing first. That, I understand, has to do with the little cochlear 'hairs' in the higher frequencies being tinier, more delicate and so more subject to wear and tear damage over time. That's why my kids can hear some mosquito ring tones that I cannot. You lose those ultra high frequencies at a predictable rate as you age.

But sshl seems to involve other factors because people lose hearing in different patterns than in old age hearing loss (or presbycussis.) I have a cookie bite shape to my audio gram. So, I have some really high hearing and really low hearing left but have lost the critical mid range. At 1 and 2 Hertz the arrows point straight down on my audiogram. Your audiogram must be reverse ski slope shaped or something, Scorpio?

I remember reading a post way back in this forum. A guy said his ENT pointed to a diagram of the cochlea and said that sshl hearing loss depends on the way the individual's cochlea is shaped in relation to the auditory nerve and blood supply..something like that. I would like to hear more on that for sure! It's a good question because our sshl hearing losses are so individual.

Okay, I'm done for today:-).

Frogs

Frogs,
You mention a lot of interesting things. It's possible that I had already lost a bit of hearing in my bad ear - I may have had a slow loss of hearing (with the hyperaccusiveness that goes along with it) before the SSNHL when I actually noticed the hearing loss. But at any rate my husband used to be driven nuts by how low I wanted the TV. For years. So I'm not sure when that started.

Is there any connection that your mom knows of between her Meniere's and her Lupus? Actually as far as I know there's not a definitive test for Meniere's so maybe it is more a description of symptoms that were caused BY her lupus - is that possible?

And I'm happy to answer whatever I can about the possible acoustic neuroma - feel free to ask.

I have heard about the clicking in my reading - you might be able to find something about it online. It's a specific kind of tinnitus I think???

Shortcake

Frogs

You asked about my audiogram - it is a flat line on 70db from lowest frequency across until 6000hz - then it spikes right up to normal at 6000hz -8000hz. When I got my first 2/3 audiograms it was flat line at 90db loss across all frequencies. Then for some reasong about 3 -4 weeks later those high frequencies returned to near normal. I find that odd as you said (and I have also read elsewhere) that the high frequencies are more prone to damage as the cila are more delicate - yet my high freqencies recovered. Going by the book - my high frequencies should have stayed damaged and maybe mid/low frequencies shown more recovery!

Hi Frog and Shortcake- here is an article on Ginko Biloba and the treatment of sudden onset hearing loss. It corresponds to what Frog was saying about the cochlea. I'm down o 10 mg of predinisone and my hearing is staying in tact so far. My next taper is to 7.5- I'm going to do that for a week or two as per my doctor- then go to 5. It was when I went down to 5 last time the the hearing loss came back , This time I am taking ginko and adrenal cortex. I'll keep you posted as to what happens. I am keeping my fingers crosse.d MRI is on Tuesday. Thanks for the info Frog.

suncasa - my fingers are crossed for you!! The link to the article did not come through - can you repost it? And definitely let us know how the rest of your taper goes.

oops! I think I forgot to post it! Here you go-

http://findarticles.com/p/articles/mi_m0ISW/is_2002_Oct/ai_9...

Frogs, - I travel all the time in a Motor Home and Cindy travels with me. Yes, she would be very hard for her if I left her anywhere else.

I change altitude frequently and I haven't noticed any change with SSHL, just the usual yawning to equalize the pressure.

Frogs - thanks for the feedback on your experiences with your 'good ear.' It does help to know you've also experienced odd sensations in it since your SHL, but have kept your good hearing. I have one more appt with a new neuro-otologist next month (just to get answers to some questions) and maybe he will shed some light on why this is. If so, I'll post. Thanks again, Rhonda