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thanks internet mom. :)

I found the site and quickly set an appointment for monday morning in edgewater at 11:45 A.M. they are going to do a full life line screening. they are going to do it all on me. :)
nitrams2000 last decade
Nitrams2000, I am once again not at home for the weekend. Just asked my daughter if I could use her PC.
I was wondering if you heard from the fellow in Quebec?
I hope these doctors up there do not make him wait too long to see him and put him on Prednisone.
I hope they know that SSNHL is a medical emergency. A dear friend of mine from way back school days in Alsace-Lorraine lives in the Mississauga area, she told me one day that while medications are cheaper in Canada and health insurance I believe is universal, there is a terrible waiting list to see a good doctor.
Deaf musician does not have time to wait, he needs to be seen now.
Nitrams2000 good luck to you on Monday with your tests, mine are scheduled for 11:45 AM on 1/30/07
Have a good weekend
Hope01 last decade

I have been deaf from one ear for a week now. One too many. As a matter of fact, one week ago at this very time, I lost complete hearing from 20 Hz to 10 kHz in 1 second. To picture that, take a two-way speaker, unplug the woofer (the biggest speaker) and leave the tweeter (the smallest one) playing. Now even though you crank up the bass, you've just lost the energy; the beat that makes you tap tour feet, the coating that will have you dancing is gone. Now, on top of that, how about a huge constant amount of hiss (tinnitus).

This last week, talking was also a dreadful experience. Like today at the biliothèque when I went seeking for books which topic you know of...I had to ask for information, I could barely hear the guy. When I spoke back, I doubted that the words were actually coming out of my mouth, I was also speaking so softly, the guy did not understand a thing. BTW, I could only find books such as 'Learn to live with a deaf person'. Nothing on SSNHL. Why don't we write one ?

One of the numerous (5) doctors that I saw said to me this week, and I quote (You still have one good ear). Simply put, PATHETIC. Stereophony, the greatest pleasure for a musician at having two ears, because with only one, it's like an airplane with only one wing. Complete change of paradigm. I am really angry (please hear the understatement).

Thursday, I felt like I was drowning, I could not work, I could not concentrate...I thought I had a brain tumor. They have not yet given me a RV for my scan, so I called at the hospital, no one would answer, then called the ENT's secretary (the one I was telling you about on my previous post), she said that I have to wait for 'em till' they call me up and because my next RV with the ENT is only february 20th, the scan is likely to be done a few days before only. PATHETIC.

I found another ENT that I will be seeing this coming monday (01/15). Should I tell her I've seen somebody else ? Will it interfere ? Will it jeopardize my case ? I need those shots very badly, thank you Nitrams2000. Which leads me to talk about him.

Mr. Nitrams2000 was so kind, he gave me his phone number ! Internet is not a safe place, but given the situation, I felt safe to call him up since I knew a little about him. He scared the $&*% out of me when explaining that my inner ear is presently inflamed and the little hair within it are falling, but they can't grow back. Over this phone call, he also suggested that I lower my prednisone dose from 80 to 60 mg, this way It will also last longer. Nitrams2000, merci beaucoup.

I also followed JeWel41's advice, yesterday I went to the first doctor that I saw, the one that prompted me to
go see an ENT, I asked him to prescribe me with an anti-viral, he agreed and prescribed Valtrex 500 mg x 2, 3 times a day. A little costly, 140$ for a week worth of pills. I read from a 24 yrs old musician in France on another forum, he claims this is the thing that saved his ear.

The only good thing about this last week is having you guys, it feels so warm inside when I read Hope01 is wondering about me asking Nitrams2000. Yes the health care is free here in Canada, but the delays are so long before you get to see a specialist that people like us end up not being treated at the right moment. I count myself as a rather lucky one, I happened to meet a European doctor that took my story at heart. But, hey, I still can't hear and I constantly feel; sadness, anger, despair. Sadness raise to the 10th power.

So much for my free therapy. Sorry to encumber your helping minds. Hope you forgive. So frightened.

Mt best regards to you all.

The reader should bear in my mind that I am french canadian, questionable english.

deaf musician last decade
deaf musician

your in our thoughts and our prayers. any thing i can do to help please let me know... you can call me anytime or i can call you on my dime... i dont mind. I was very lucky to get my hearing back.. granted i still have some problems. right not i get these wierd feelings where everything is dioreinted , almost like im stoned or something or maybe had to many beers. sort of a swaying feeling. online i have heard this to be everything from labryinthtis to lyme disease to you name it so i am not sure what it is but i have planned i whole bunch of test for this week.

what i feel is not horrible but sort of eritating and causes me to be anxious and have trouble focusing on this simplest of tasks... i had this feeling once before when i first got ssnhl but i thought it was the steroids. funny thing is i have not lost my hearing this time though. so who knows what it is... my doctor i saw last week informed that i may never find out what this is but he was nice enough to tell me that anything i my think it is or anything that i may read about he could test me for to rule out that it is not that.. he said as long as i am willing to pay for it he will test me for anything i want. so a testing we will go.

monday- wellness package from lifeline.
weds- imaging center xray of full stomach , pelvic, chest, upper and lower,

thursday- full blood test. all kinds of different stuff.. 4 vials and about 20 things.
nitrams2000 last decade
Not trying to be funny but I also have been having the feeling like I'm stoned for a couple of months now. I first got sshl at the end of June 2006 and I've had moderate hearing loss since then (predisone didn't work for me, but after reading on here I think I may have gotten too little, only 60 taper for almost a week)Anyway, since then I go for accupuncture pretty regularly but I am very aware that I feel strange. Sort of like when you have a cold coming on--not exactly dizzy just fuzzy like almost to the point of mild confusion. Not that I am confused but I will forget something for a second and thats really out of character for me. On top of that, I have trouble figuring out where a sound is coming from so that adds to this crazy feeling. I have no idea what this is, but it has me freaking out. Anyway, just wanted to let you know you are not alone in feeling like that. Let me know what it is if you happen to find out.
TaraJoy last decade
Dear Deaf musician, I am still at my daugther's and using her PC. I was so glad to read that you were able to speak with Nitrams2000 a wonderful young man. Glad to hear that you did find a doctor that is willing to help. Make sure you do not get any ototoxic antibiotics, if any should be prescribed after you are done with the steroids. BIAXIN-XL did a number on my left ear where I still can hear.
To put it simply the day after the onset of SSNHL, the audiogram showed total deafness in the right ear and good hearing in the left. Three weeks later, the first ENT gave me for free this BIAXIN-XL because he said I had fluild in the left ear (good ear). What the medication did was take away some of my hearing in that ear, I do have now moderate to severe loss in that ear and wear a Phonak Savia 211 BTE, but I have 100% speech clarity/discrimination. As for your question about mentioning to the latest ENT that you saw some others before him/her, I told my second and third one that they were not first.
It was at the insistence(spelling?) of my two children that I finally went to what they say here in the Boston area are the best: MEEI. But as I mentioned earlier in a previous post, I do not like that they do not believe in the ear shots or the hyperbaric oxygen chamber.
Please let me know if I can do something for you, I can become your Internet Mom (as Nitrams2000 calls me) also.
Do not feel bad, your English is great and that for somebody that speaks French all the time.
Do you know that my family in Metz, also north of Paris, and Switzerland had never heard of SSNHL until I told them about it.
There are a few women on this board that wrote to Oprah and hope to get a show going on that subject as most of the public at large it dumbfounded when it come to that terrible aflliction.
All the best to you
and all the best to all on this forum. Nitrams2000 good luck with your tests this coming week.
Hope01 last decade
Tarajoy and Nitrams - Ditto! It was partly this that led to my MRI scan as obviously these can be symptoms of acoustic neuroma. I think it is also to do with the brain being confused by having to make sense of everything now that it sounds so different and distorted and also the tiredness that comes from the enormous amounts of concentration now needed just to listen. We need 2 ears to locate sound and I can't now either. Has anyone tried listening to surround sound - it is the most unpleasant experience!
JeWeL41 last decade
JeWeL41 i looked up AN and found that it is mostly a tumor but I had a MRI scan and it came out clear. so I dont think its that but who knows.
nitrams2000 last decade
Nitrams, acoustic neuroma is much more rare than SSHL so it is not very likely that any of us have it. Out of interest though, was your MRI scan Gadolinium enhanced? mine was not and I have complained about this because in all of the literature I have read it says that the enhanced scan is the gold standard for diagnosis.
Does anyone else suffer from constant earache and head pain on the side of the deaf ear?
JeWeL41 last decade
JeWeL41 my MRI was done with and without contrast nut i dont really know about Gadolinium enhanced? I will have to look into that one.. AN is very scary if you read up on it. i hope thats not the case.
nitrams2000 last decade
I should be in the living room wishing the pats do OK in San Diego, instead I am here in my daugther's den on her PC. I had an MRI done several days after the onset, it came out OK, but they never told me how it was done....
As for the pain you experience on the side of the deaf ear, I do not have that either, all I have on that side is a 24/7 low key Tinnitus. The famous Dr. Rauch told me it is brain static which I will now have for the rest of my life.
Of course, if I become a candidate for a CI, that will change I would believe.
At this time a have 100% speech claryti in the left ear despite the moderate to severe hearing loss but I also wear a hearing aid, a Phonak Savia 211 BTE. I do have terrible Tinnitus in that ear and it is worse depending on what I eat.
It is so strange it seems that no case is the same.
My onset happened on 1/22/06. It will be a year in a few days, and I am so afraid the same could happen to me in the other ear.
JeWel41, are you totally deaf in the ear where you had the onset?
Hope01 last decade
Jewel41--I am having an MRI done at the end of the month. I originally had put it off because the specialist I had finally seen told me that all my hearing test results and the way the onset happened leads him to beleive that it is not acoustic neuroma. But to calm my nerves and just in case he is sending me to have one done but funny enough the referral is written up as an MRI without contrast. I mentioned this when I saw it, but he just says that I don't need the contrast??? Oh well, now that the holidays are over I plan on going to get it done the end of the month. The doctor told me he fully expects for it to show nothing but when you feel like this day after day its hard to calm down and beleive your alright. I don't have any pain but still a feeling of pressure on the side of my bad ear. No headaches either. I'm not sure if this classifies as tinnitus but several times a day I am getting a tone in that ear. It lasts only about 3 seconds then fades away back to the water sound I always hear in that ear. Plus this has just started in the past month. Is anyone else experiencing anything similar? I get so nervous at night that I might wake up completely deaf in that ear. Thanks again to everyone who shares their stories--it really helps to see that other people are experiencing some of the same craziness. Have a good night everyone.
TaraJoy last decade
Deaf Musician,
I have been away and just read your posts yesterday.
So sorry to hear this has happened to you also, and glad that you have had some comfort from this Forum, it really is all we have, until they figure this out, if they ever do, or we do.
I had 100% hearing loss in my right ear on 15th Sept last, and have regained 50 - 60% back, nothing happened for well over a week and then I noticed a difference gradually as it came back. More in the lower frequencies though with only about 20 decibels in the higher frequencies, which means everything I hear is muffled in that ear.

It is absolutely devastating to begin with but as you regain some, life gets a lot easier and you become grateful for what you get back wether it be all or a little.
As you get some back the Hissing, roaring and ringing reduces as your brain starts to recognise what its hearing. The way you sound when in a shop and speaking gets better too as do all the other oddities that come with this affliction.

The Prednisone dosage Nitrams has suggested is certainly the way to go, I did that and when I finished did the same again with another lot and it helped, just remember its early days and remain as positive and as patient as you can.

If you look back at all our posts you can see the different things we have all done and tried, for me I wanted to cover all areas, Viral, Vascular etc. Here in Australia we don't have the injection to the inner ear unfortunately, so I tried everything, from Intravenous antivirals, supplements, Diet, Steroids and sub cranial massage with acupuncture, plus meditation.

I now feel better in my self and grateful for what I can hear and have learnt to put up with the hissing and ringing.
SO hang in there and pray as we all are for you and remain proactive in every area, it will get better to some degree, every one's recovery is different you may well be a lucky one.
Mertie last decade
Hope01, I have moderate hearing loss in my left ear but no clarity at all, everything is distorted and I have 3 types of tinnitus constantly - a loud whistle, a whooshing sound and 'musical' tones when I nod or shake my head. I am very concerned about the pain but I will have to wait to see the maxillo facial surgeon to see if it is related to my jaw (TMJ). Sorry if I alarmed anyone re acoustic neuroma but we do need to discount all possibilities.
JeWeL41 last decade

Nitrams2000, Hope01, thank you so much for your support.

Hope01, your advice on ototoxic has led me to find some pretty scary stuff, I went on Dr's Baumann site; I happened to have taken some Paxil (rated 4 on 5, 5 being the worst) for 3 months lately to treat a mild depression and sleep disorder; I hated the feeling so I quit. Paxil is a medication that could hurt your ears. I hate to talk about my private life openly (depression), but I might as well say all that I know since I've learned so much through your information sharing.

Mertie, thank you, I'm ever so grateful for your nice words, it cheers me up.

My daughter and I went to the Oratorio for an organ concert. While we were there, I was feeling sorry at not having listened to all the music before this tragedy, I know it does not make sense. But I'm so sad. I'm not only losing one ear, I'm losing my career, my way of expression.

I woke up in the midst of the night (2:00), could not sleep, thanks to the Prednisone. Usually it's so quiet. The tinnitus in my right ear made me realize how severe things are. Been up since then, now it's 7:00 and I have to put on a big smile and go awake my lovely one.

Grand merci.

deaf musician last decade
deaf musician

I had the same problem with not being able to sleep at night from the tinnitus but I found a great answer. I went to wal-mart and bought this fan called the Vornado. it maks this awesome swirling noise that is just the right sound to drowned out the tinnitus. you put it on medium speed before you go to bed and you wont hear your tinnitus until you wake up. it works for me. if it makes the room to cold then you can put a book over the top of it. when i put a heavy book on the top of mine i get the perfect sound without all the air. i love it... here is what one looks like.


also you can by a herbal sleeping pill thats actually good for you called melatonin. it has no ototoxics in it and is all natural. also you can ask your doctor for some samples of a great drug called lunesta. it is prescription but its great. you dont wake up drowsy in the morning and also has vertually no ototoxins in it.

stick to your 60mg a day for 12 days then taper down. they also gave you antiviral just incase its virus related but they are taking a shot in the dark with that one... I have yet to meet someone that got this from a virus but then again i have also yet to meet anyone who ever found the real cause of this.

lost but not least DONT GIVE UP ON GETTING THE EAR SHOTS!!! time is running out.

hope you are feeling better and we all hope and pray you will be well again. anything I can do to help please call me.

P.S. How about them chicago bears. great football game last night.
nitrams2000 last decade
ME :(

as for me im still the same. some times I feel stoned, sometimes i feel diziness or swaying, my hearing is ok though my right ear rings a little, sometimes more then not.

the stoned feeling is a feeling like of airheadedness. i forget things, if wife ask me to do something she has to remind me because i forget 5 seconds later. very sort of cloudy feeling as if I had to many beers.

the swaying feeling isnt here 247 but is hear a good portion of the day. it does seem to be better since i have tried some exercises a friend gave me.

i have a jettery feeling in my head and i feel pressure in my teeth. almost as if my wisdom teeth are pushing my other teeth.

these are all feelings i had before when i had first had my hearing loss. but there is no hearing loss this time.

I have haerd of a special clinic in jacksonville that specializes in these kind of problems. they are called the MAYO clinic.


im thinking about going there. if i can pinpoint this thing then i can lick it i know i can. thats why hardly anyone gets cured form this thing. they dont chase the needle in the haystack. but there is a needle there i sware.

love nitrams
nitrams2000 last decade
Nitrams2000 - Have you also had a TMJ check. I wonder if the dizzy feeling comes from a TMJ missalignment?
All the best to you
Hope01 last decade
Hi All!
JeWel41- I do not have pain in my left ear but do have a feeling of pressure. Have read here that other people on here have experienced this feeling. I also get headaches on top front part of my head

TaraJoy- I have 3 types of tinnitus, a sound like waterdripping in a pipe, a fuzz sound and a tone that is like a high frequency sound.The frequency sound changes,is really loud at times and low other times depending I think on how tired or stressed I am. The other 2 are constant.

Some days my tinnitus is debilitating and I have to stay in bed with my eyes closed.

If 2 or more people talk to me I can't separate the voices and it sounds garbled.And as someone else talked about, I have no sense of direction now so when someone talks to me I don't know where the voice is coming from and have to look around. This can be embarrasing at times

It wis almost 5 months now so am a little discouraged. I am filling out forms for disability but hope that I can be accomodated into some other kind of job in my profession.Someone asked about all the docs. I workwith knowing about SSHL. They know very little and there are 40 nurses in my unit and 2 knew about SSHL. Needless to say I am educating them, ha!!!arrgg!!
Thanks for all your ideas and input everyone.
anitime last decade
I pray for everyone on this board. I have been doing some research and reading into this. Ive thought this was everything from cancer to tumor to disease but I fanlly found something that made since.

Almost everyone agrees to steroids but most dont know about the time you must take them or wether the ear shot is good or the pills are good.

I have learned that realisticlly you need 3 or 4 things. you do need both the pills and the ear shots and here is why... you need to cover your basis on this thing so if you have a tumor or a vestibular problem it is best to use the shots but if you have a labrynthitis or viral problem then pills are best.. but if you do have a viral problem then you will also need some strong antibotics but if it is std related then you need something better like valtrex so the true answer that any doctor should give anyone that has this is.

1. ear shots
2. prednisone pills 60mgx 12 days
3. antibiotics
4. valtrex
5. antiinflamatory herbs or prescription

yes we should take all these at once and yes they should do this for everyone... now you might not need some of these depending on whats wrong but no one knows for sure and there is not ennought time so the answer is to use them all

expectations... expect nothing. if you hearing loss is do to noise then you will not get hearing back and thats a gaurantee. if your loss is do to a virus then chances are you may not get hearing back but you have a chance. if it is disease then you may get hearing back but most rest assurdly you will have some problm with it again.

mine is might likely some sort of disease since i have still got problems.

bottomline.. catch it quick and hope its a curable virus or you are screwed.

the fact that i got hearing back at all shows that it is virus or disease.
nitrams2000 last decade
there is just not enough time to rule these all out so you must use them all.

1. ear shots
2. prednisone pills 60mgx 12 days
3. antibiotics
4. valtrex
5. antiinflamatory herbs or prescription

you got one month tops and then your done as my mom use to say. your 'extra crispy not original recipe'.

its sad but true. now i get why some doctors give antibiotics or valtrex. if they gave you valtrex then that was one smart ENT. the more they gave us means the more up they are on this.

sometimes we take our frustrations out on this board or on ourselves but the truth is ENT's need to keep up on technology and they have cures right in front of them in todays world and they do not even see it... as much as i knew i thought i gave myself the best chance until tonight i realized with all i did i did not give myself the best chance and could have done better.
nitrams2000 last decade

primrose oil. people use it all the time fro arthritis. it works. you got to take alot of it though
nitrams2000 last decade
Is anyone having trouble with the page going off the Screen again as it did once before. Can't remember what we did last time
Mertie last decade
Dear Nitrams 2000 Thanks for your lengthy research and explanations, you take a lot of your time to explain all this to us when it should come from our ENTs.
The one thing that I would say when it comes to antibiotics, be careful that they are not the ototoxic kind like BIAXIN-XL which ended up killing some of my hearing in the 'good ear'. But then, I had a dispute with somebody on another forum and that person had a point also saying that not everybody is affected with the ototoxic effets of some of these antibiotics.
Dear Anitime - it pains me to read that you have to go on dissability and it also scares me because when I think that you are surrounded all day long by doctors and nurses and you say so few are aware of SSNHL when an onset of that condition is a medical emergency. I would say that the medical field is really falling behind when it comes to ear problems.
And then there is the difference of opinions between the treatments on the West Coast and those here on the East Coast???? That in itself shows the confusion among these doctors.
So like Nitrams2000 says we have to take matters in our own hands.
As I said many times before here on this forum, I had lung cancer in 1989, but you know that I felt so much better knowing that my doctors knew what they were doing, because they have a good handle on cancer and that makes such a difference.
I pray for all of us and hope that we can cope with it all and this includes the problem with the Tinnitus that than be unbearable at times.
Hope01 last decade
To all - the treatments that Nitrams suggest are standard in the UK with the addition of carbogen gas for 15 mins evry two hours for 48 hours. Remember, antibiotics do not cure viruses and usually with a bacterial infection you will have a raised temperature or other signs so antibiotics are not given here as standard. Injections are not given in the UK and we have no specialists in this field, only ENTs who know woefully little about it.
Much of the research I have read suggests that none of these treatments are any more likely to have an affect than a patient is to spontaneously recover although clearly some on this forum think prednisone has worked. I have had all of the treatments offered here starting 3 days after my hearing loss and sadly have noticed only miniscule improvement which is more likely to be simply that I am getting used to it. I can't find any UK forums does anyone know of any other forums or other brits with this problem as I am thinking of trying to set up a help group here in UK?
JeWeL41 last decade
JeWel41 - Unfortunately, I have no idea about a forum that is generated in the UK. But then it takes time to find these forums in any case, I finally stumbled the other day on forums in French and German (since I read and write French and German).
It is interesting that in your reading research you have aligned yourself with the philosophy of the specialists of the Harvard school of Medecine in Boston. They still say, that so far they believe there is no proof that anything helps SSNHL except spontaneous recovery.
I personally do not believe it.
What I am also mad about is that none of my ENTs took the time and studied the time line of my onsets. As soon as they heard 'viral infection of the upper respiratory system', they all jumped to the conclusion that this is what caused it. I do not believe so.
I believe that doctors do not spend enough time to listen to what the patient is saying or reading (in my case) the printed file which I did of my time line of the onset. Then they do not take time to explain anything to the patient; What I know so far is what I read about it on the Internet and on forums like this one.
Take care
Hope01 last decade

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Information given in this forum is given by way of exchange of views only, and those views are not necessarily those of ABC Homeopathy. It is not to be treated as a medical diagnosis or prescription, and should not be used as a substitute for a consultation with a qualified homeopath or physician. It is possible that advice given here may be dangerous, and you should make your own checks that it is safe. If symptoms persist, seek professional medical attention. Bear in mind that even minor symptoms can be a sign of a more serious underlying condition, and a timely diagnosis by your doctor could save your life.