Sudden Hearing loss _{Page 67 of 105}

Hi all, I came across Jazzdore's recent post and had to chime in!

Jazzdore, reading about the tube fiasco and your consequent loss of the relatively good (compared to many of us..50% is a lot better than zero!) hearing in your affected ear, I'm totally apalled. Holy Hell! what in the world was a student DR. doing in your ear? It's not like when I went to the local med school to have my impacted wisdom teeth pulled by student dentists. This is one of your five senses here we are talking about..arguably one of the 2 most important!

I don't care if you signed something there is a point at which you may have a lawsuit just because of the blatant carelessness, incompetence and lack of proper follow up care.. poor treatment all round! YOur story only further justifies my sense of paranoia with regard to the medical community. Doctors are just people. There are both very good and very bad doctors and everything in-between.

Anyhow, Jazzdore, I'm so sorry for your experience and hope you are as okay as you can be. People, even doctors, often don't appreciate how important every bit of hearing and balance function is. Your hearing was treated like it hardly mattered that day...a student doctor left alone to perform a critical procedure, wow!

Mimi, your sshl story is amazing. I awakened from a nap to the hearing in my R. ear absent and a roar in it's place but no 'pop!' But, like you, I instantly knew that something really big was going on. I was at the ER as soon as I could find a ride. How strange that so many sshls reported include the experience of a loud goodbye 'pop.' Very sad! I don't mean to be negative but don't think it does any good to gloss over reality. It helps to say what you feel. Some friends and family are made uncomfortable by my truthfulness. What are you to do? It's the truth.

Anyway, Mimi, I know exactly how you feel about your remaining good ear. I'm terrified of losing my good ear. I don't know if the drug you asked about is ototoxic but very many drugs are. Even the most ototoxic drugs (Aminoglycoside antibiotics) may not include that info in the inserts that come with a prescription. I have read some posts at the beginning of this forum. One was from a woman who was deaf due to an aminoglycoside given her for burns. She was pregnant at the time and her child was then born deaf. Don't underestimate ototoxic drugs' role in sshl!

One recent post on our forum said that their chiropractor has noted a rash of balance/hearing loss/tinnitis cases..almost like a viral epidimic. I wonder? My neuro-otologist says he has seen 'thousands' of sshl sufferers over the course of his career (he is probably in his late fifties.) Of course, being the very specialized kind of doctor that he is everyone in the area with sshl might eventually see him. But, I do wonder if there's a viral epidemic or if it's like the new car syndrome when you notice everyone with that same car on the road.

Mark, I'm glad to see that you're still part of the forum. I don't contribute consistantly but like being able to check in and see how you and others are doing. It sounds like you are doing a lot like I am just (as you once wrote) 'plodding along.'
I liked what you wrote about keeping your ears clean with shampoo, funny but important. About me, I didn't think I had too much balance difficulty beyond the initial vertigo that passed along with the nausea, for the most part, within days. But, and my sshl happened around 5 mo.s ago, I get hit with spells of vertigo when walking lately. I will even ask to hold someone's hand until it passes. So, I guess, though mostly doing well, I'm not left unscathed by balance problems. They aren't constant but intermittant so I guess the exact cause is up for grabs. Well, believe it or not, I could write more! Again, I'm very sorry Jazzdore! Please post how you are after having your eardrum ripped and remaining hearing in your affected ear leveled by medical 'proffesionals.'

I wish everyone the best holiday season. Christmas is a time of noisy parties and family reunions, and can be very challenging. I'm going to try and make the most of it all. I'm grateful for what I do have.

Merry Christmas!, Frogs.

Finally went to another ENT, got my first set of injections, 2 injections 10 min apart, Dr was super informative, and the first Dr to want to give me a full screening for blood disease, auto-immunity disorders, and other things. He has his own concoction of cortisteroids that he has said has been successful for him in the past. It's my 5th week into SSHL, finally something positive.

Hello all, I haven't been on here for a while - i've been trying to get on with life as best I can with my diagnosis (acoustic neuroma - wait and watch for now) and the tinnitus. I'm sorry to see so many people continuing to go through the catastrophic experience that is sudden hearing loss and our new 'best friend'tinnitus. I am a very positive person (good job really!) and have tried not to let this episode get in the way of 'living'. However, I recently had a hearing test which caused a pain behind my ear and made that side of my head feel 'strange' for a few seconds. Although it was noted I have not been able to find out why it happened, adiologist doesn't know?! -not had it happen before and this was my 5th test this year (although not had one since June).
Has anyone else had this experience? I read some previous posts and saw that Elaine G may have had a similar experience - was any explanation given to you Elaine? (Sorry you have had a tough couple of months.)
I found that within 24 hours or so my tinnitus started to get worse - much more high pitched hissing and a sort of generator sound - and has not improved yet. Fortunately I am sleeping ok but I hear it over everything else during the day. I had been doing pretty well with ignoring what I had but I feel like I've taken a step back now and with no answers to be found it's very frustrating.

Esperanza,
I had another hearing test last week. I remain profoundly deaf and continue to have pain at high decibels. It was explained to me that the hearing loss and vertigo are related to damaage done to the 8th cranial nerve. The sensation of pain comes from a completely different set of nerves and in my case these pain nerves were not damaged by the virus that damaged my 8th cranial. The tinnitus did get worse right after my hearing test, but it settled back to a 'normal' level by that night. I hope this information helps you.

Thanks Elaine for your prompt reply - did they tell you which set of nerves that caused your pain are?
Was your pain behind your ear (sort of inside the mastoid region?). I haven't had any other kind of test apart from the 'bleep' test.

Frogs, I had 80-85% hearing loss, not 50%. But proud to report finally after 5 weeks, I had my shot, and actually there has been some improvement. Those who are in late stages, don't fret have hope the injections still can work! I haven't had my hearing test yet, go on the 6th for my second injection and hearing test, but I gotta say they hypersensitivity to high pitch sound and Tinnitus have come down a notch. The tinnitus is always there but not as bad as the beginning. I still have days with fullness and an odd aural sensation. I'm definitely interested to find out the results of my audio test. The new ENT I'm going to seems to honestly care for my situation and has invested interest in my case for many reasons, finally someone who is stepping up.

Esperanza,
The pain I felt was within the ear canal and gone within seconds of the audiologist ceasing to produce the sound. I do not know the name of the nerve from which pain generates within the ear.

Hi all,

Bad news from my end. About an hour ago, my tinnitus suddenly jumped about 3x louder. It's really loud now! I'm pretty sure I just lost another portion of my hearing, in the higher frequency range this time, since that's a substantial portion of the new tinnitus. I called the on-call doctor, who ordered another course of oral steroids.

Anyone have any experience with a second sudden onset?

Thanks,
Ted

Ted, I'm really sorry to hear that and am glad you have hopped on it with the dr.

I had a second onset about six months after my initial hearing loss. I did not hop on it, I was too discouraged and wondering if I was simply imagining things. I actually told myself I was having a panic attack. But no, my hearing actually was measurably worse.

My current doc (audiologist...is working with me to try me out with one of the new Zen hearing aid) said that the second onset make him suspect a virus as root cause....

I will keep you in my prayers as you work to alleviate the tinnitus....it's hard to deal with!

For tinnitus sufferers, will repost Re: Sudden Hearing loss From Jazzdore on 2008-12-12
Lucky for all my American friends, you have this option down there, we do not here in Canada yet. This is supposidley a great habituation device for Tinnitus and Hyperacusis (sound sensitivity). 6 month treatment as opposed to the 12-24 for standard Pawel habituation with white noise generators. If anyone has any experience with Neuromonics, please let me know I'm willing to do some long distance travelling to help with my issues.

http://www.neuromonics.com/
http://www.tinnitus.org/home/frame/THC1.htm

Congrats, Jazzdore, on the improvement! Fantastic! I hope it continues.

Esperanza, I have a friend who is fighting an acoustic neuroma. He received Cyberknife radiation treatment at Stanford - decided against surgery because of the risk of permanent total deafness; he's a recording engineer - with good results so far. Went for his first 6-month checkup last week. The tumor is dying away and hasn't swollen or grown.

Thanks for the perspective and kind words, SBBBG.

Things are better today, whether or not the steroids have anything to do with it. The tinnitus level is nearly back to what it was before, though the high-frequency components remain. But definitely a big relief to turn down the volume.

I fully understand about the 'simply imagining things' trap. I had the same thought, and it did inhibit me from calling the doc for about an hour.

Curious about your doc's virus hypothesis. Do you know the rationale? I've read that if SSNHL clears up on steroids and then returns, that points toward an autoimmune disorder. (Not that this has anything to do with me - the first round(s) of steroid treatment gave me only the slightest improvement; about 15dB at 2kHz. I pooh-poohed it at the time, but by now I'm happy for any improvement.)

Please let us know how the Zen hearing aid works out. I'd love to hear from anyone who has used a hearing aid to counteract SSNHL. Did it alleviate your hyperacusis and/or tinnitus? I'm scheduled for a fitting in February.

I'm glad to have found you, but upset that I need you:)
On Dec. 23 I had a mild cold, during the night got very congested, blew my nose quite hard. My ear immediately clogged. I thought it was, as usual, my finicky eustation tubes. But it never cleared, and has become worse. Went to the ENT today (day 6) and started the steroids. I have been reading all night, and of course, go back and forth between hope and terror.

I can deal with the hearing loss, altho it would be a terrible life-loss, but this feeling of clogged, full, plugged is just awful and the ENT said that may or may NOT go away.

Advice early on: he did not prescribe anything else, but from my reading, I wonder if I should go ahead and add Valtrex, which is the anti-viral for herpes type 1 (cold sores). I have it on hand and could do a course in 5 days.

Secondly I'm concerned about how crazy the steroids might make me...I'm anxiety prone, and have taken antidepressents for 20 years to control panic attacks (I'm totally free of them now, but refuse to give them up). If I become agitated, will I have to give up the steroids?

Thirdly, I'm taking the flavanoids, because oddly, my oldest sister had this last winter and her ENT had her on them. She got good recovery and didn't start the steroids till week 3, so I am hopeful.

Yesterday and today, I have a new wrinkle...womens' voices have a profound buzz to them. So does music. So annoying, I feel like putting in earplugs. Does that help?

So many questions, and you all are so knowledgable...I now know not to let anyone talk me out of the shots...does anyone know of a good ENT or neuro-otologist in the Chicago area? Is there a website with referrals?

Many of you have already given me hope, but I have to be honest, I'm scared to death over this. My best guess as to how it happened: terrible stress preparing for Xmas with houseguests who all got sick, exhaustion, and finally the head cold, which is still there.

Any encouragement welcome,
Thanks!

2Dogs, sorry to hear about your hearing loss, and fullness. From what has happened to me and from what I read, the fullness goes away. You didn't mention any ringing? Do you have ringing? For your condition, mine was slightly different as I never had a cold, or bug. It just happened. As for medication, I took a course of Steroids 60Mg tapered and antiviral meds, with hard core vitamins, and did the Nucca chiropractic thing. Then went on to get a tube inserted into my right ear, then started on steroid ear drops then finally the shots. As with every case it's different, I reclaimed some hearing, and fullness was pretty much gone only after the shot, even though it was 5 weeks in. For me the fullness was there for the first 3 or 4 weeks then seemed to go away on its own. I was worried about the steroids as well, didn't do a thing to me, felt fine, but I'm easy going person.

Music was annoying but your brain will rewire and that hypercaucus issue will subside to some extent. There are techniques and white noise maskers to help if it doesn't.

Talk to your ENT, u have the tubes, they can inject steroids easily. For me personally the shots are the only thing that has helped me thus far.

For everyone else, a little site that can help you cope at work.

www.simplynoise.com

Hello, everyone! Nothing new on my end except I went back into the office full-time yesterday for the first time since this happened (10/15/08). I could handle the noise better than the first time I tried to go back and the dizziness is better, although definitely still there (and the tinnitus and fullness, which I hate).

My problem happened this morning - I was sleeping on my good ear and slept straight on through my very loud alarm clock. My husband leaves for work hours before I have to get up. So, I slept a solid 2 hours past my 'wake up call!'

How is everyone waking up these days? I've started researching and it sounds (pardon the pun) like a vibrating alarm clock that fits in your pillowcase might work. I'm definitely open to suggestions - I need to be able to get up on time...thank heavens I didn't have a meeting first thing today!

Just a teensy bit of pity party - this is so much more life-changing than anyone with hearing can understand. We all know this - I'm sorry to learn there are so many of us out there, but I am truly thankful to be able to read all these posts and not feel so alone. Thank you for being here - I pray daily for this group of silent sufferers who are working very hard to cope and get back to life 'as usual.'

Jazz, thanks for the quick response. Can you review for me, other than the flavinoids, what vitamin regime you used? I spoke with my sister, who had this last year and recovered, and she told me her dr. also put her on a diruetic, and something called Niaspan (I think an Rx) for ciruculation. Heard of it anyone?

I've googled neruo-otologists in Chicago, see a Dr. Timothy Hain seems to be the Guru....any Chicagoans here?

Did you all take your 6 10mg. steroid pills at once or spread them out over the day? I took the first dose all at once, but I wonder, is it better to get the blood levels up by pumping them in slowly but surely.

This morning I am getting the R2D2 hearing...it's the worst yet.

Thanks, my new friends, for any support you can give.

2Dogs,

Sorry that you have joined the club. You have every right to be scared to death over this - and also every right to be hopeful.

I'm guessing that the fact that womens voices sound weird is actually a good thing - it likely means that you are regaining some high pitch hearing. The first thing I noticed when some of my hearing came back was the beeping when I opened my car door - which is also a high pitched sound. Hearing out of my bad ear still sounds really weird - I guess I would agree with your 'profound buzz' description. Unfortunately for me, this has not gone away.

My hearing came back to where I have about 30% speech recognition. Not very good, but WAY better than 0%. And the fullness feeling has slowly subsided. It's not gone, but it's really not too bothersome anymore.

Regarding the herpes medicine, from what I have read there are no side affects (and also likley no benefits). I'd take them just in case ! I took Acyclovir which I believe is similar.

Finally, regarding the steroids, I am not anxiety prone, and they affected me after about 10 days. For the last 4 - 5 days, I didn't sleep well, my normally low blood pressure was extremely high and I was not in a good mood. But I survived (and my wife survived) and I think you'll be fine. After I stopped taking the steroids, I was back to 'normal' in a couple of days.

Good luck. It's hard, but it slowly gets better. I'm 4+ months into this, and my life is mostly back to normal. The biggest life change for me is my sensitivity to loud noises and crowded places. All I can do is try to avoid these places.

Stay positive and lean on friends and family - it helps !

Mark

My regiment was Vitamin E, B complex, Flax, C, D, Magnesium, Zinc, A and Ginko. Some of these may already be in the Flavinoid complex.

The diruetic/Cholesteral drug thought is based on the shotgun approach to this ailment, they put people on diruetics who have minears, as this also maybe related to the fluid in your inner ear. Cut out high salt too.

Tim Hain is the man! See him if you can. His writings on Vertigo helped me deal with my struggle with the spins.

My steroids were in 60mg pills so it's safe to take them all at once. The dosage doesn't matter, if affects u the same. Again steroids affect people differently, after 7 days your body stops producing the natrually occuring cortisteroid, after that point you may have some side affects, that's why you taper off the drug. So your levels can build back up naturally. You won't have any moon face or much water retention because of your short course of the drug.

Mark and others, try white, pink or brown noise machines or downloads via MP3's of samples of whitenoise. Listen to it for several hours a day at a comfortable level (it will mask the buzz, tinnitus) it's the same technique they use for TRT with aides. This has helped me with the loud sounds, weird hearing (hypercaucus) at work I listen to www.simplynoise.com in a right ear headphone for 4 hours a day.

It's calming as well. Again listen to it as a comfortable level.

You guys are incredible..Mark and Jazz, I really needed this! Went to Dr. Hain's website, he seems to say injections should start by 10 days? That's a short window for me and I don't know if he's in my plan. Calling Ins. company right now.

I'll keep you posted. My stress level is over the top. THanks, everyone.

I had my shots 5 weeks later, and I'm having improvements, they claim 10 days is the best time frame...but they will inject up to 6 weeks after initial onset.

All: here is a website I found...perhaps it's already been listed, but just in case

:http://www.suddendeafness.org/

Has a list of the 8 centers for treatment.

I do have an appt. with Dr. Hain at Northwestern Friday. Wonder of wonders, he's in my network.

R. Tim is one of the best in the Biz, good luck.

Well, off to a good start getting in so quickly, too. I'll let you all know what he says. I've added what you suggested to my vit. regimine. Hope my ENT won't give me grief about getting a second opinion...Hain wants the audio testing. I know, be tough!

2Dogs,

Don't worry about insulting your ENT by getting a second opinion - it's your hearing that we are talking about!!! It's great that you'll be seeing an expert. They are few and far between when it comes to SHL. Keep reading and learning and seeing experts and do everything you can in these critical first few weeks. Oh yeah - and be tough !

Thanks for giving me the boost..I did call and had the audiometry faxed over.

Question...for anyone (Mark?) who had the odd buzz, or R2D2 voice factor, expecially with women's voices, or music, which just set in yesterday, has that gone away? Also, did I mention if I close one ear and listen to a musical tone, the bad ear is a full half-step above the left ear? Talk about discord! I pray this goes away, because I play the piano and my daughter is a singer/songwriter...music is so important to me. Can I put an earplug in it?

Hello 2dogs,
I had the same alarm issue. If I fall asleep on my good ear, I hear nothing. Fortunately, my dogs hear the alarm and vibration from my iPhone alarm and the vibration must remind them of the pager on their 'doggie hearing aids' and they frantically lick my face and climb on top of me. We only use the 'pager' function of their shock collars due to some prior aggression problems, but this has now provided me with two 70 lb. enforcers for my alarm. If I happen to be asleep in another room, they actually awaken my wife to come get me up. Very effective, but my wife doesn't always find it amusing.
I have become addicted to swimmer's silicon earplugs to deaden the hyperaccussiveness in the good ear and protect the bad ear from sudden noises, like female voices, that bore into my head and try to drop me to my knees.