Sudden Hearing loss _{Page 27 of 105}

Nitrams2000
thank you for the information this means alot to me. Did you say you spent 7 to 10 grand???? Thats crazy it looks like I will not be doing anymore with my SHL because I don't have that kind of money. WOW that's a lot!

Hope01
I know what you mean I'm going to give you my e'mail address that I don't really use but I will keep my eye out for yur mail! I'm not going to send it now I will wait to hear from you on this again to make sure that is ok. Thank you so much. Oh and the myspace post did go out but I do not know how far it got I will be sending more periodically.

im very open and honest. everone knows me email if you need it. please send me a email. also number is 386-295-5156 anyone can call i am always here to help or can appreciate any help that can be provided.

OK Justine send me that email address that you do not use often. And I will send you that file as an attachment with an email.
In that file, I do not mention names of doctors, I only say # 1 or #2 or # 3 etc.
But the whole file should be something that you can use for your paper.
I am so glad you have such a positive attitude.
Take care

Hi,
I think It's great that you are writing a research paper on SHL.

I saw an eminent consultant ENT today.. he works in a large London teaching hospital.

I asked him why the UK medical profession is so ignorant about this condition, which results in the long delay for treatment.

He said it is because the condition is rare. He has only seen 5-6 cases this year. Also in the UK the medics believe in 'evidence-based' treatment and the benefits of steroid therapy are still controversial because so many people recover spontaneously without treatment. He said the Americans take a more aggressive approach. Not sure if the Americans on this forum would agree with him!! He believes in aggressive therapy with steroids, etc. He said that he has trained his team to respond to SHL as a medical emergency and will admit a patient to hospital for treatment if necessary. This is a step in the right direction, but I think he is in the minority.

Things will only change if people like us who have suffered SHL put pressure on the medical profession. I'm not sure of the best way to do this.. I'm giving it some thought.

Best wishes and good luck with the research.

Hope01 my e-mail is **sweett4142** thats at **aol.com** (it wont let me post my e-mail address) make the subject something that will be obvious that its your email please...thank you!

Rosetta thank you I was assigned the paper before I got SHL and I wasn't sure what I wanted to write about then I got AHL and I knew I wanted to write about something no one really knew about...America is not very aggresive they don't know much atleast in Michigan...They do consider it a medical emergency but yet not many doctors or nurses know about it...I am also going to as many hospitals and public doctors and doing a survey to as many employees as possible about SHL and then filling them in on what they don't know that I do and maybe this will open their eyes. Hopefully.

Rosetta
I meant SHL sorry

To 18withSHL
Hello Justine,
Just sent you that file to the email address you had indicated.
Can you please confirm when you get it.
Thanks so much and take care

Nitrams2000
I do not recall that you ever gave out your email address, if I had it I would send you an email.
Take care

Rosetta,
You are so right it is up to us to put pressure on the medical profession when it comes to SSHL.
I still hope that the person on this forum who wrote to the Oprah show will get to go on that show and explain SSHL; it is such a terrible thing.
You will probably read this in the morning across the pond, so I say good morning and have a wonderful day.

ok stick with me maye i am going crazy...

I have a puppy. its a english bulldog. I have only this puppy for a short while. not even a year yet. we brought him to the vet because he had a bad ear infection but then again i thought to myself , he has had a ear infection since the day we brought him home practically. now call me a idiot but they have found connections in things with animals and humans. maybe its pur coincidince but could it be that this would be a rare peresite that attacks the ear. i know its far fetched just thought i throw it out there. i dare not mention that nutty idea ot the vet and the vet gave him medicine and said its ear infection but vets dont know much. just a thought.

ok now call me idea crazy... dogs to get SSNHL. there are stuff on google about it.

go to the link.

http://www.google.com/search?hl=en&lr=&q=hearing+loss+in+dogs

what fi there is a connection. has anyone thought of this.

I just made a serious connection. Distymper is a disease that dogs get that causes hearing loss and is transferable to humans. yes humans can get distymper to. so when I was wondering if I could have got it from my dog. Maybe me idea is not that far fethced after all. here is a link on it.

http://www.veterinarypartner.com/Content.plx?P=A&A=1733


this article shows proof that we can get distymper from animals.

I am totally baffled by this SSHL deal. Before, I had to wait 10 days to get to an ENT, start Prednisone and within 24-48 hours I had a quick recovery. Did the whole 3 weeks deal anyway. I had a 'relapse' 5 days ago, started Prednisone the night my hearing had dropped to deafness and within the last hour I notice that my hearing was not as out-of-balance. So I picked up me cell and called our home phone and talked to my wife with my deaf ear, something I was not able to do just this morning.

I am scheduled for the intra-tympanic injection of Decadron tomorrow at 11:00. I intend to show up, but not sure whether he will do it or tell me to keep up with the oral 60 mg. of Prednisone. I still have the rushing tinnitus in my left ear (the one that went deaf on me). I feel lucky and happy of the 50% (my guesstimate) regain, but I don't feel that great not knowing what caused it, why it seems to be coming back and how long a wait for the other shoe to fall...again.

If this is a comeback, the next phase will be to plow deeper into the homoeopathic world to put an end to whatever cycle I seem to be in. One other thing I found interesting to share...my otologist mentioned that he seems to have noticed a seasonal issue, with clients coming en masse summer-fall period... allergies? I will let you know what takes place tomorrow and if this recovery is sustained.

settle stan we gotta talk me and you have samething i sware.

call me or email if you want. no pressure but i wonder

Hope01
I got the email thank you so much it means a lot to me. I havent looked over the time line right now because it's 2:30 am and I just wanted to see if I got it yet I will look at it tomorrow after my job interview (wish me luck) thank you again, have a nice day.

Nitrams2000
Thank you for the email I wrote you back its kind of long but I needed to get it off my chest you know. Thanks again

Oh and to everyone else I also wrote Oprah and I am going to local hospitals in my area doing interviews to see just how many nurses and doctors know about SHL and how much they know..I will be handing out personal announcements at public places listing the symptoms and stating the emergency of this syndrome. I wont let it be unknown!

I am so glad I found this forum as I have been so frustrated with the lack of knowledge about sudden hearing loss. From all I have read there isn't a lot known about it or whether the treatments actually work or if it would have resolved anyway.
I was at work on Sept 5 (same as another poster)when I realized that I could not hear people properly. Also heard a humming sound that I thought was external. Plugged my right ear and found I had no hearing in my left. I went down to energency,I am an OR nurse, and the doc told me my ear was plugged, to take an antihistamine and go back to work. I accepted that and finished my shiftswith help. I was having vertigo problems and tinnitus. Went to my doc the next day and he put me on serc and referred me to an ENT. His secretary phoned me with an app. in 3 wks. I got my boss to phone and she got me in in 2 hrs. Apparently my docs secretary didn't tell them I could not hear. They treat sudden hearing loss as an emergency and would have had me in right away.The ENT doc put me on 50mg prednisone for 1 wk and then 25 for 1 wk. Alxo a high dose antiviral. I was very sick for 3 wks with vertigo nausea and have 3 types of tinnitus.I am also in BC Canada and my app. for MRI was to far away so I went in to the MRI scheduler and told them to phone me if anyone cancels. I got phoned and in in 2 days. Try this!!!!
It has been 6 weeks, I have very low tone, no audible hearing in left ear. My vertigo is pretty well controlled now but the tinnitus varies throughout the day ,still 3 kinds and wears me outat times. I went back to work yesterday and today but find if more than 2 people are speaking I can't seem to differentiate and lose auditory focus. Big problem where I work and will have to change my job if I don't improve. Went through a few weeks of depression and quite teary with the sudden change of life but am pulling together somewhat. I was also afraid that I would lose hearing in my other ear as I had read all the worst case sscenarios on the net. I now feel lucky that it is only one ear and feel that I will adapt
Does anyone have a stiff neck. I have had since this started and I get headaches in the back of my neck. I read someone gets nightsweats. I do too and this is new with the onset. Also get them during day. I am going for massages, and see a naturalpath. She is doing accupuncture and thinks everything is due to my kidneys. I am a bit sceptical but am at a loss as to what to do so will keep going to her

To anitime
What is really scary about this whole thing is the fact that the hearing loss seems to come and go for a while until the hearing goes definitely. In your case, the onset seems very similar to mine.
Unless somebody is a figther like Nitrams2000 and insists on getting the needed meds. you are screwed
1. I lost the hearing in the right ear first between Christmas and New Year during a 10 minutes break at work. Next morning the hearing was back
2. on 1/22/06, while driving I lost all of it again, got
oral Prednisone (6 days treatment)the next day and some distorted hearing came back within several days.
3. On the next ENT visit, the following week, I did not get any more Prednisone, on the contrary, got BIAXIN XL that did a number on my other ear.
4. Several weeks later I had again the same loud Tinnitus and lost the distorted hearing I had regained in the right ear.
Long story short, all hearing is gone in the right ear.
I wrote a file with many questions that I want answered regarding my loosy treatment program, will see ENT doctor #2. This time, I will not leave his office until I get answers to my questions.
My conclusion is that I let people get away with too much.
I believe what we all have learned by reading what the posters are saying on this forum is that we have to fight, fight, fight. Unfortunately it is too late for me. Yet I still do not want to give up, even though I understand that these hair cells are dead by now.
I have some water from Lourdes that my Mom brought a few years ago. Last night I put a few drops in my deaf ear and asked God for a miracle, but nothing happened. Things happen for a reason, I wish I could know what mine is.
To all of us I wish that we can handle this SSHL and Tinnitus.
Hoefully the Oprah show will set up a show on SSHL so that the public at large hears about SSHL.
To all of us, hang in there.
I have never made so many typos while typing, it shows that in the back of my mind my primary concern is my hearing impairment.

Just wondering if the eminent consultant in London was the one I told you about. If not, could you let me know the name of the consultant you saw.

I still have 4 weeks left of the pregnancy and need to get moving if I want to get an appointment for after the pregnancy. Reading all of your comments makes me more motivated to get seen again by a specialist who might be able to help (even though it's been almost a year since I've lost my hearing). Has anybody had any luck with their hearing coming back (or even getting better) after a long period of time?

To all
There is one more thing that I want to say so you can reflect on it.
I received an email from one of my siblings telling me to get over this whole thing and think about Uncle So and so and Aunty So and so, they both wear hearing aids and never ever complain or even talk about their hearing impairment......
OK here we have it again, but these people with progressive hearing loss, loose their hearing over a sometimes wide time span and therefore it is not as dramatic as what we have experienced with these onset of SSHL:
One minute you are fine, the next one you can't hear anymore and you are at work. Or you go to bed fine and you wake up deaf in one ear. That is a big, big big difference.
Needless to say that I cried when I received that email.
Most of the people with progressive hearing loss, arrive at retirement age and they can still hear and the hearing aid ends up in a drawer. But SSHL seems to strike people while still working or even at the tender age of 18....like Justine on this forum
That is the sad thing about this condition.

anitime get the ear shot of decadron to the ear. this is where they give you a shot in your ear but if you are going to do it you better do it quick. time is running out .. its been almost 2 months for you and they say you need it witing the first 15 days. some doctors beleive you can go 2 months but no longer thats for sure. they do 1 shot a week for 3 week. they take a needle and put it in the ear drum .... it saved me allot. this might still work for you but you have to act fast or its to late. if they dont do it in canada then come to the states. you need it NOW!!!!!!!! I'm very serious!!

ANITIME

Please read this website. call these people. they will take care of you. they are doing the study. they can take you.

http://www.suddendeafness.org

they might even pay for it.

All

In re-reading some of the threads, some things stand out for me. I have had some night sweats, but only noticed them after I have been on Prednisone. I also had neck pain and stiffness issues leading up to this most recent SSHL(we all seem to be looking at connections that may or may not have anything to do with the onset of SSHL, which is helpful and may lead somewhere). Antoher possible connection I was considering that seems to have preceded both events was working around a lot of dust in our basement and having severe reactions to it...profound sneezing, etc. Plus, pre-onset this time I had a slightly burning internal drainage on the left side of my throat that stopped yesterday prior to the return of speech recognition in my affected left ear.

Hope my otologist can think about what I just wrote when I present it to him this morning in about 4 hours!

nitrams2000, I noted that you suggested we talk (phone or e-mail). Call me on 206-913-9117.

it says there are all kinds of qualifications you have to meet but if i were you id make sure i met those qualifacations if you know what I mean. lie if you got to. but the treatment is there for you. if for some reason you fell you can still do it on your own with out thier study then they can reffer you to where you can still get this done but this has worked fro many including me.

Nitrams2000 was your last post addressed to me?
To all - As I was working in my basement I came across some old technicals manuals, a thought occured to me : In the IT world once you reach 50 and you loose your job due to outsourcing, you have no luck getting back into the IT world never mind how good your resume is.
I just wonder if it is the same in the medical field when you have ear issues, these doctors might think, 'Oh well the patient will start to loose his/her hearing soon anyway'. That might be the reason why I was pushed aside and lied too instead of getting more agressive treatment (shots in the ear and hyperbaric oxygen treatment or whatever else is out there).
It has to be that or it is because of the meds I take for high cholesterol and high blood pressure.
Will let you all know how my appointment goes on Monday because I want definitive answers now. As you can all realize I am sooooo mad.