Sudden Hearing loss _{Page 18 of 105}

TaraJoy I had to cheat to get my extra predisone. i had to lie and say i lost mine. it was the only way to get enough. i had to do what i had to do. I know how you feel. most doctors in florida say 50mg a day for 9days and then taper off it slowly but the new study says 60mg a day for 12days. i went with the study plus i get my 2nd shot tomorrow. lie cheat or steal , i gotta do what i gotta do.

mstctiger I prayed for you sunday. may god help us.

there is some good news though. they say they are really close to finding something on this whole canal thing.,,, they beleive canals travel through the brain and that is where the tinnitus problem begins. I know it wont get the hearing back but to fix the ring sure would be nice. my guess is my ear is at 90% to 95% heaaring with some base noise mixing and somerings that really are only noticeable in quiet areas. then its irritating as sin. i also notice it when i put my finger in my ear or a ear plug. also ear plugs do seem to help. ' i hope you will be ok' I worry about everyone on this board. you are all my friends now. i dont want any of you to get hurt or die. check out or yahoo group.

Thanks mstctiger, Tarajoy and nitrams2000

Yes we need to spread the word about sudden deafness since it is neither age or gender related.
- mstctiger, I hope you can make it to the Oprah show. That would be a good way of spreading the word.
- Tarajoy, yes it would pay to live on the West Coast when you have an onset of this kind of hearing loss. I used to live in Agoura CA. years ago and before that we lived in Corning actually Big Flats NY. I was always under the impression that in and around Boston, we have access to the best in the medical field. I cannot believe that I was told that there are no shots in the ear and no HBOT in the states, that it is only available in Europe..... I have a friend in Portland Oregon, she recently told me that she received such treatment about 7 8 years ago (not for her ears) but for a head injury sustained in a car accident. But in any case it is available as we all have seen in different posts on this board.
nitrams2000 Good for you. I am sure that if I had received another set of Prednisone, my hearing would have come back, as some had only it was still distorted.....
And when I think that my GP and my Pharmacist did not even know about sudden deafness....... It is about time that these people are all aware of this problem.
I tell everybody that I come in contact with about this, I just do not want another person to go through this.
Had I gotten a non ototoxic antibiotic when I had the upper respiratory viral infection in early December 2005, I am sure there would not have been this onset of SSHL on January 22nd of this year for me.
Now it is too late, all I can do is try to make sure nobody else gets it.
Take care and Good luck to all of us.

Hi, I want to get a general idea on what causes SHD. Does everyone remember what they were doing the day before, or even 2-3 days before their hearing was lost? Do you recall anything different? Who can honestly say this happened out of the blue for them? For me, I was really stressed out for a few months until this happened, and I was under tremendous physical strain the day before it happened. I really think this is a neurological problem, and would like to hear about your stories, ty.

cagatay17

SSNHL and timelines.

one of my doctors explained to me that it could be something that happened recent or something that happened as much as a few months agoor if viral it could have been a flare up from that and it could have happened years ago.

Think of it this way. in most cases SSNHL is a flare up or inflamation of the inner ear due to increased swelling in that area. The question is, how long would it take for that time to be swelled so long in order to notice loss of hearing. We would need a proper timeline from research which we dont have.

like with me. first time i noticed it was at my house , i was working on my computer and early that day i was at my house and had some friends over to watch games and football. I did nothing crazy. had some drinks and poof 'no hearing' but if you go back a bit.

1. two months ago I got huge bigtime sick on a cruise.

2. about 3 months ago i got punched in the face, in the left eye, same side as the left ear that i loss y hearing in.

3. I do take lots of stupid stuff like asprin and when i was sick i took painkillers.

4. about 2 to 3 years ago i got hit head on by a lexus and even though i flipped over his car and took out his windshield and left a big bump on his hood, I walked away with nothing but a few scratches. they said it was a miracle i was alive because he was doing 40MPH

so really it all depends on the time line.

P.S. jut a side note. I got my bottom wisdom teeth removed and my tops i left and they have always bothered me so i wonder if thats it? also i had scarlet fever as a kid. and my business is always a major stress on me. sounds crazy but ive had it all i guess. LOL

i remember feeling very stressed out.....just got a promotion at work, going through emotional/relationship ups and downs...and the night before this happened, i was out with some friends at a bar which was very loud and had a few drinks. some guys that we met bought us some drinks--they were blue. who knows, maybe they tried to drug us all. i didnt have the whole drink--maybe half. but my friends just took sips of theirs. i also remember feeling very toxic--not working out, breathing in a lot of second hand smoke..and just feeling out of sorts. i think i need to change my lifestyle, i've been looking at buying a house out of the city to get away from smog.

cagatay17
Thanks for starting this survey.
First the fact = I lost ALL hearing in the right ear in less than an hour while driving from Natick MA, to Pawtucket RI (takes less than an hour via I95) on Jan. 22nd 2006.
1. the week before, I did quit my job on the phones in customer services in a medium size corp. Had lost my real job (software QA engineer) due to outsourcing 3 years earlier in a big well known corp. I am at the age where I can retire. But I was not too happy with my decision to leave that CS job. So I was under tremendous stress about my decision.
2. In the morning of 1/22/2006, I had made some chiken and gravy, had used 3 flavored bouillon cubes and remember thinking this is a lot of sodium.......
3. Did hit my head on the ceiling in the loft of my attic several days before the onset.
4. Did have a viral upper respiratory infection early December. Did not get any non ototoxic antibiotic from my PG, he prescribed MUCINEX.
It tool several weeks for the infection to clear up.
When the onset happened, the doctors that I saw ALL concentrated on viral infection, none of them wanted to know anything else... I still feel that the onset was not due to that infection around December 3rd.
I am taking supplements since 1989. Do not have a single grey hair.
I jogg and keep busy in and around my home.
Hearing loss in the left ear is now moderate to severe and none left in the right ear.
Good luck to all of us.

Well, I had the whole stress thing going on too that had been building up for about a year. I hadn't been getting anywhere near to enough sleep, was living on coffee and just simply not taking care of myself. This was when I developed the SSHL but what is interesting was that I had experienced a problem with the same ear back in Feb 2005 while I was about 8 months pregnant. It actually felt kind of the same, like it needed to pop and when my obgyn referred me to an ENT (the same one I initally went to this time)he gave me a hearing test and told me not to worry that it was all pregnancy related and that it would go back to normal after the baby was born. Well I guess at some point it did although I was probably too busy to notice. And then over a year went by when this happened. I went back to that same ENT who said the 2 things were not related and that this time I had SSHL. But I have never even so much as had an ear infection in my life and I've always been healthy and I'm only 28. But then I went to another ENT that specializes in diseased of the inner ear and after expalaining of this to him he thinks it was most likely the result of a blood clot in the blood vessel of the inner ear that happened while I was pregnant. Also, when he recieved the records of my hearing tests from the first dr. he commented that on the first hearing test (while I was pregnant) the nerve showed that it was growing weak. If it was treated at that time it probably could've been prevented but I just took this ENT's word for it and went home and forgot about it. So it really does pay to get a second opinion. The only question now is what to do about it. He told me that he usually reccomends accupuncture and vitamins and thats really it. So I am doing both but so far I feel the same just not as nervous.
On a side note, Nitrams2000: I was in a car accident 3 years ago and was hit from behind at about 50mph and we also walked away from the accident with nothing but whiplash. Up until now I had forgotten all about that but since we are looking for a common ground...
I think by far the worst part of this is not knowing why because its just crazy to think that something like this can just spontaneously happen to such a vital sense as your hearing and that a doctor (when you are freaking out because you truly believe you are going deaf) can just tell you there is no rhyme or reason and that it is a 'mystery' even to them. I completely agree with everyone that says that something needs to be done to make people more aware that this could happen to anyone and there really needs to be more research done to find a real cure. I realize that its up to us to research when something happens to us but in this case there is so little information given that it becomes like a full-time job to find any answers and I don't know anyone that has the time for that. Another problem is that I think its hard for other people to understand. I have had to decline going certain places because of this like one of my friend's weddings because I just knew I wouldn't be able to deal with all the loud music and was just not feeling like going and most of my friends while they are sympathetic cannot understand what I am actually going through and maybe that I am being a bit dramatic about the whole thing.
I am keeping you all in my prayers and hope we all recover from this soon.

Tarajoy,
I felt so sorry reading your post, you are still so young to have to deal with SSHL.
At least when it happens to somebody like me, I know that I had many good 'hearing' years.
And when you say that your friends think that you are 'dramatic'. I know how that feels, one of my brothers said the same thing about me. My two children, while they symphatize with me, they do not really understand it either. So I do not even bring it up anymore.
Despite all this we all must keep a positive attitude. I think I have already mentioned on this forum that in 1989, I came down with lung cancer (never smoked). The doctors gave me 6 to 8 months to live.....
Here I am 17 years later jogging etc...
I do eat a lot of fresh vegetables (especially brocoli). And I had a good job to go to until April 2002
(see my previous post).
I do have a positive attitude, but I must say this onset of SSHL affected me more than the lung cancer.
Every day I struggle to keep up with that positive attitude.
I wish a knew how to do more for the cause of SSHL. I hope that the poster (can't remember his/her name) that wrote to Oprah gets to go on that show. This would catapult SSHL into to awareness of all her audience around the world.
Had the chance to go to Beijing China in 1994, and on TV in my hotel room I saw Oprah..... worldwide audience...
Take care and be well

frined of mine had ringing in his ears and his turned out to be MS. i think i amd going to get a MRI to be safe. they say a MRI will tell you if you have MS. also im going to get a physical and some more blood test.

there are to many variables with me...

yes I have been bad sick.
yes I have had stress.
yes I have had scarlet fever.
yes I have been hit by car and person.
yes I smoke cigars. 'no cigs though'
yes I do travel allot. I go on cruises. this year I took 4 cruises. i wonder if i ppicked up a bug somewhere.

no noise facotr to speak of. allthough I was at a 'slightly stoopid' and 'pepper' concert in the summer.

to many variables. if the doctors could only give us a timeline. that sure could help.

cagatay17 and nitrams2000

Forgot something - My first ENT doctor did request an MRI of my head and that came out fine. So no tumor

But yes Nitrams2000, by all means you should have an MRI done. Surprised that no doctor requested that for you?....
Take care

forgot to add my diet. recently this year i was on a diet and lost a ton of wieght. i went from 265 to 196 pounds. i'm 6 foot tall so thats gotta be a good thing allthough at times i would try to starve my self a little. sometimes i would go a full day with out eating. I did that once a week. i was working out and burning up to 100 calories in a single work out. that may all seem to be allot bt i used to be in sports and football so hard workouts was not unusual to me. i thought i was 100 times healthier since the weight loss but maybe i was wrong. I was also on a diet drug called xenical.

supposed to be 1000 calorie work outs... typo

nitrams2000

I did a fast check on the drug called xenical which you said you take or took.
It is not on the list of Ototoxic drugs.
This is another thing we all have to be aware off: there are so many ototoxic drugs on the market.
I keep a list of these drugs in my purse now so that if a doctor wants to prescribe a drug to me, I first check that list now. This is another thing that I did not know before January 22nd of this year.
Take care

man the shots to the ear are really helping. this is my second shot and bamm i noticed a huge differince in the way i feel from yesterday to today. wow i cant beleive it. i mean i got most of my hearing back about 2 days ago but today my state of well being and just the way i feel in genreal feels alot better today. GOD BLESS THE SHOTS!!!

nitrams2000
You are so fortunate to have gotten these shots. I am happy for you, and sad for somebody like Tarajoy and myself that were not offered shots.
I am so mad that I think I will write to the eye and ear clinic were I was treated and question them.

I am sure nitrams2000 that all of us are happy for you.
Get to run now.
Hope01

My goodness. Many of you have had head injuries. I am so glad you are ok. My onset happened when I was going thru a crown treatment at the new dentist. He asked me to put my head way way down, twisted. It was uncomfortable but I did it without pain because I was on sedative. In the middle way, his voice was getting so so loud. When I got up, I had a few minutes of vertigo. Before the treatment, I had so many medication like ativan, benedrel, inhaler, naseral, lavender inscent, etc. I was only prepared for the most dreadful dental treatment. So, I blamed my vertigo to the meds, went home, shipped a glass of wine to sleep. When I woke up, the hearing was gone. I only heard wind blowing like sounds. I had more vergigo and vomiting for the next few days. By 3rd doctor at emergency, my hearing was 100 % gone. I thought about blood clod, but doctor said not likely. MRI did not show it. I guess vertigoes suggested viral infection. I must have it in my system for a while. When the moment came, it attacked my most volnuble spot. I was stressed at work for over 6 months, my husband started his own business first time, etc. I did see well known doctors at ucsf and stanford within a month, but they did not even mention me the shots at all. Later when I questioned, they told me shots are not guaranteed. But it helped many people. They thought I had no money or what? I do not know. Anyway, I am so glad Niatram has a good news. You have been very proactive. Thank you for sharing a good news. I can use it. Take care , all.

got a question for everyone. does anyone have this feeling of being very high tense. lots of pressure around the teeth and the jar area and it just seems like my head is sorta punding. you know like pressure un your head when you go down under water. does anyone else feel this??? it is very strange. one of the doctor's said it might be the steroids doing this to me. does anyoneelse feel this.

i still have some symptons. im not out of the woods yet. my head hurts. i get ringing in quite areas at night easpecially. im depressed but happy that im feeling better but still depressed. i show no interest in appetite or work. very hard to concentrate. and i get pressure feeling in my head and i feel jittery in my head. like im moving super fast.

oh som guy got mad at me on whileiwas driving and i just found outhow important it is to keep your temper under control when your on steroids. my heart was beating a mile a moinute and i was so nervous my hands were shaking. i had to go home to avoid jumping out and killing this guy. sreiroids suck.

could steroids be doing allot of this to me???

nitrams2000
I am getting a little confused with your posts now. As you are saying, you are not out of the woods yet.
But your previous post said that you were doing so well?
I/we all were so glad for you.
You also said God bless the shots, now you are saying steroids suck.....
Is it that yes you can hear again, but now you feel the after effects of the shots?
What this medication might have done to the rest of your body????
Hope you feel great all around soon

Hope01

You are correct. I did say the shots helped I beleive. I think they really work. also my hearing is indeed back again. but I do have some things wrong with me still and even though it's 100% better its still not perfect. also keep in mind that something caused this and now i still got to deal with finding it.

to anyone that has this problem and stopped after they fixed it or you didnt fix it and went on with your lives,, i'm afraid to tell you that you made be in for a big surprise. there could be something seriously wrong with your body going on and now if you let it go your in for big trouble.

as fas as my symptoms that are left.

1. I feel pressure in my head. especially around my teeth and jaw and back of head. not alll of the time.

2. my adreniline will go racing so quickly that it feel like i am in fast motion. i can feel my heart beat.

3. headaches and pounding sensation like a jittering sensation.

4. depressed and stressed alot.

5. sometimes it feels like a under water sensation but i can hear fine. if that makes sense.

I do think that most of these are the effects of steroids but im not sure. I know when i wake up in the morning im fine till i take my steroids and when i do then we are off to the races all over again.

nitrams what makes you think there is something really wrong with your body? I believe I've about 95% recovered from this, and i feel like my old-self. Although I do get some headaches after some extent of physical activity. There is also the ringing which is getting fainter and fainter but still there. I reduced my prednisone dosage as soon as I got my full hearing, because the side-effects are horrible. I've had a CT scan of my brain, and nothing was found, and I have an appointment with my doctor 2mrw, will let you know how it turns out, what he says etc.

this thing happening to you. is only one of 3 things...

1. viral infection.
2. noise.
3. warning sign of things to come and the outlook may not be good.

in the definition it says and i quote.

'Sudden hearing loss (SHL) should be considered a medical emergency for which definitive diagnosis and treatment is absolutly nessecary.'

I fear this maybe something really bad for me and i worry for everyone here. a friend of mine had this and his was MS. but then there are 1 in 3 cases. that it even comes back. so i figure if i want a shot at beating this then i better find out what it is. :(

I worry and pray or you guys all the time. anyone of us could be in for big trouble. it makes me ver sadd. I could not have done this without the information from this board and the help love and support of you guys. and some friends i met along the way. thank you dearly.

nitrams2000
I am almost sure your are having side effects from the steroids treatment.
After my onset of SSHL, all hearing left my right ear.
After the steroids (prednisone pills)only disorted noises came back.
But then, I had again the same loud waterfall noises in that ear. Saw the ENT guy again, and he refused to give me more steroids, never even spoke of steroid shots.
After oneday the noise left me and I had only very little distorted hearing in that ear left.
Several weeks later, same situation, again I went to that ENT guy, and instead on giving me Prednisone, he refused and put me on Klonopin....to calm my nerfs he told me. I was ready to toss the prescription into his face.
I worry that it could also go to my left ear where I have moderate to severe hearing loss and I wear a HA, with which I can hear very well out of that one ear.
Again, I believe you are experiencing side effects from the steroids.....
I wish you well

has anyone ever had a situation where the hearing was lost again after they got off the steroids. ill be honest. im afraid to get off the steroids. what if i loose my hearing again.

see your never out of the woods. with this thing.

read this link.

http://www.innvista.com/health/ailments/earail/earprob.htm

this thing is scary.