Sudden Hearing loss _{Page 20 of 105}

back home. anyone that needs to talk just let me know. im spending the next few weeks looking for a cause. someone needs to find a cause for this thing. did anyone get wierd feeling in thier head, sorta like a headache bt didnt hur? sorta like a pressure feeling when they went down to far in the pool or like a jittery feeling. i still get that? but i think i still have steroids in my system. i wonder how long steroids stay in your system after you go off of them?.

i took my last half of pill today. i have a whole nother cycle of them for future use that i saved.

yea my hearing healed completely but I still have that pressure on top of the head you're talking about. It's def. not a headache. And the ringing: it is veeeery faint now but it feels like its coming from my brain and not from my ear anymore. As I said, I think this is a neurological problem.

cagatay17 if you dont mind me asking a few questions because your sounds alot like mine.
have you ever had a MRI or have you ever been tested for anything viral. like MS, mumps, measels, chickenpox, syphillis, herpes, HIV?

also were you bad sick anytime around the time you got the hearing loss. ?

I notice that you said you thought it was a Neurological problem, did any of your doctors tell you this one neurological problem. what do you mean by neurological .

I'm just curious. trying to find a cause for this thing is really hard. any help would be much appreciated.

ye I had a CT scan of my brain, and the docs said it was for caution, and that they would call me if anything was found. I didn't get a call. No I wasn't sick, but was under some stress and lots of physical strain the day before.

The docs said it can be from a virus in the cochlea or from a problem in a vein or capillary. This feels to me like it's caused by my brain. I have the pressure on my head and apparently the ringing was in my brain and not my ear all along, you just realise it when it gets real faint.

Rosetta, I'm also in the UK and lost my hearing nearly a year ago. After finally being referred to an ENT specialist he gave me some steriods which seemed to help but he didn't believe in the steriod shot that most people on here mention. I did have it done, however, during a trip back to the States. I did see a ENT specialist in London that seemed very proactive and wanted to insert a wick into my ear to administer steriod drops. I was going to have this done and then found out I was pregnant. Please look back through this forum to find the doctors name and more information. I find that the ENT specialists here in the UK are fairly blaise about the whole thing. Good luck!

ok went to two of my doctors today. did the hearing test and passed it 100% gearing back. he said it was maraculous but there was only one thing. he said when they do the hearing test they do a 4 part test. here are the four parts

1. sound pitches and didnt variables. he said i passed 100%

2. words and phrases. passed 100%

3. vibrations to the ear. 100%

4. Muscle reaction in and around the ear. failed.

he said that my muscles around that ear have no reflex like i have lost most muscle reaction around that ear. now he said not to worry that this doesnt really effect the hearing much and peaple do have or get this. he also said it was obvious what ever it was may have caused this and maybe it is just the last thing to heal but he said no worry because im doing fine.

tomorrow i get my MRI which he doesnt expect to see much from. hopefully praying to god he wont find anything there.

i asked him his theory on what he thinks this is. he said that in my case he beleives somehow that the inner ear and middle part of the ear have fluids inside, when mixed together are horrible and very bad. he said that somehow he beleives those tow fluids seeped over to each other and mixed. he doesnt know that to be true but he thinks thats it and that would explain the wierd pressure feelind he says. so he said knock on wood MRI shows nothing then i am heeled. Praise the lord.


P.S. still doing the right things. eating right, no caffeine, no bad foods, no cigars, trying to get my self right with the lord 'NOT EASY' this is a true awakening and i think what happened to me is more of a warning. you body gives you warnings when you are not taking care of it in the right way and i think this is just one of them.

To all

Sorry it took me so long to get back to the forum regarding health care coveratge for CIs
I called different health care insurances and each time I was told that contrary to hearing aids, cochlear implants are covered by health care insurances.

I hope none of us needs one, but just in case, there is coverage for CIs.

Even Medicare covers CI's and if there would be a problem, the patient would get coverage through the supplemental health insurance he/she has.

As for all of you that did get steroid shots into the deaf ear after an onset of sudden deafness, I am glad to read that your hearing came back but I am also very very mad that none of the ENTs that I saw even suggested it. I wish I had found this forum in January and not it July.......
If I can give anybody any advice please follow the example that Nitrams2000 gives you on this forum.
Do not wait for your doctor to suggest anything, he/she might be too ignorant when it comes to sudden deafness..
It is sad, but it is a fact of life.
Best wishes fo all

To Nitrams2000

I am glad to read the good news regarding your hearing.
You have the right attitude and you seem to do your home work. Also, you have a doctor that EXPLAINS things to you; My ENTs did not explain anything, their attitude was 'you have to live with it'
I am glad you gave up smoking. In 1989 when I had lung cancer, I would not have had a chance of remission had I smoked.
Even though, they had only given me 6 to 8 months to live..... and now we are in 2006......
Attitude was my savior. Also, I had many people praying for my recovery (people here in the US and across the pond in Western Europe)
Take care and stay well

Attitude will always be your savior hope because I truly beleive you to be an angel. hang in there. your kind words mean so much to many of us here. :)

Nitrams2000
Thanks so much for your kind words. What is great about these forums is the fact that we communicate with people understanding exactly what we are talking about.
The best family in the world does not understand unless they went through it.
In 1989 (when I was sick) the Internet was still in the development stage and very few people knew of it (those of us in the IT world did already know it was in the making).
And while the Internet can become a monster in some cases, it can also be of such great support.
Take care and stay well

Hi, all. I was away for a while because a friend of mine passed away. It really got me rethinking about my attitue on this thing as you can imagine. I found this forum too late, but hope someone can get a lot of suggestions here. I learned a lot from Mike, Englechen, Hope and many others early days. I admire Niatram's positive attitude. You are such a leader. Someone once told me 'God does not give you what you cannot bare'. I believe that. Take care, all. Love.

mstctiger thanks for your kind words. I think i am going to create a site and a book based on SSNHL with timelines, helpfull drugs. and other methods. im going to put up to new site post i red recently that show two new drugs to work with. ther ehas got to be something more we can do. I did my MRI today which was very scary and I pray that everything is ok but im not out of the woods yet.

P.S. NOW DO YOUR HOMEWORK PEOPLE AND THINK BEFORE YOU TAKE ANY FURTHER STEPS AND READING THE REST OF THIS. DRUGS ARE NOT SOMETHING TO PLAY WITH!!......

with that said i found a website that sells Prednisone online without a prescription. I bought some as a back up just incase this happens again and some dumb doctor wont give my another precription. the website whe you can buy this is. http://www.noprescriptiondrugs.com
but think before you buy. these are steroids and this is dangerous stuff. these are not anabolic steroids. anobolics are actually much safer for you then this type of steroids but anobolics do not work for what we have... Prednisone seems to be the steroids drug of choice to use and the regiment varis but it is either 50 or 60mg a week for 2 weeks and make sure to taper after wards. becarefull!! if you have had this for a while then there is little chance this will work. here why.... the inner ear swells up . it could be inflmaed do to virus or whatever reason but its swolen and you have about 3 weeks to get the swelling down. if you dont then the hairs that translate in there die. if that happens you are screwed. people say you have longer to work on it but everyone i talk to thats a patient proves to me that you have very very little time left. I do not beleive anything longer then 3 or 4 weeks is all you have. there are cases where it worked for people that waited longer but it is few and far between. in my book 3 weeks is pushing it bigtime. it's all about chances and the ear shot gives you a much much better chance. My way of thinking is it should be rule of thumb to act fast and do both. the shot and the pills. and ear vits to help heal. this thing attacks and attacks hard. thats why i lost my muscle reflexs in that ear. it hit me hardcore. the site I posted to get the steroids is nothing more then a suggestion and i dont want anyone to get hurt on my behalf but i bought a bunch. let me know if anyone needs help with it.

thanks again for the kind words. im a grown man and i know we all hate to admit it but you dont know how many time i red this board and other boards up late at night crying looking for hope, support and naswers. we all desperatly need this. :(

To all - there is another item we all have to be aware off. There are these days over 200 medications that are ototoxic.
When I got the onset of sudden deafness last January, the hearing in my left ear seemed OK according to an audiogram and the way I seemed to hear.
After the 6 days of Prednisone pills, my first ENT doctor gave me the following week a prescription for BIAXIN antibiotics. Soon I noticed that I did not hear that well from my left ear anymore as I had to cuff that ear with my hand to hear better.
At that point, my family told me that it was time to see somebody else. But I did not get more help from that 'famous place' (I do not want to indicate names). And I could not see the famous doctor for another 3 months. So I was referred to another doctor. That one gave me nothing when he could have suggested the shots right into the ear.....
Meanwhile, I started to spend more and more time on the Internet and I came across ototoxic drugs, I found out that there are more than 200 of them and there was the name BIAXIN that I had taken.
I printed out a list of these drugs and now I carry that list in my purse, because I will not take any drugs on that list. I do not look or act as a bitchy woman and I an not a bitch. Lately, I needed some medication (unrelated to my ear problems). When I checked my list in front of my GP, he became more or less irritated. But I truly do not care; my residual hearing is at stake here.
Please check this out. If you are already on the web, just type ototoxic drugs (enter)
The public at large needs a lot more awareness about these things. But then my GP had never heard of sudden deafness.... neither had my pharmacist.
In the meantime some of us are screwed for the rest of our living days.
May we all be able to cope with hearing loss, deafness and also tinnitus.

It's true, so many drugs can cause ototoxicity. As I've said in earlier posts, my 43 yr old dgtr truly believes the two main drugs that caused her LOSS were DIURETICS and QUININE, all prescribed by a doctor who was NOT MONITORING what these drugs were doing to her. And my dgtr trusted in him!!!!!!

We 'supposedly' trust these docs, but you really can't.

I found a good site that talks about ototoxic and lists the drugs. I dont know for sure what caused my hearing loss but i know i was popping pills like crazy. i took aspirin and sleeping pills everynight. also actpnimines, advil and ibuprofen and tylenol. i took many of these every day. i wonder if that might be the culprate. i dont take them now thats for sure. i wonder if the ototoxic theory would be based on onear hearing loss or 2. ??

any way here is the site.

http://www.lhh.org/otology/ototoxic.htm

its full of stuff and very educational.

engelchen - I have like you horrible tinnitus. Some days it is worse than others.
This morning it was terrible. So I went jogging in order not to pay attention to it. I must say it is better now. I am not saying that it is a cure. Might have been a coincidence. I take Ginko Biloba every day and I see no improvement, yet as mentioned in a prior post, I stay away from all the foods and drinks that supposedly cause it.
nitrams2000 - I still take TylenolPM, this is the only way I can get some sleep.
I did not see TylenolPm on the list of ototoxic drugs.
engelchen - another thing I do when I cannot sleep: I get up and sit on my PC,I am in the process of gathering historical facts for a time period in which I want to write a book, so between researching data and putting down my ideas (sort of brainstorming)I forget about the tinnitus at times. The ringing in that deaf ear is worse than the deafness.
Joyce - allthough I do not know your daughter, she is in my daily prayers, she is still so young to have to go through this. It is so good that you her Mom understand the extend of her hearing problems.
Take care all

Hope 01 Thanks for your good thoughts.

On the sleep issue, I take Calms Forte' (homeopathic remedy OTC) and it works very well for me to sleep better and deeper. I deal with fibromyalgia stuff and sleep is a big issue for us with this basket of 'stuff'.

Rhus Tox 200C has really helped me with my body pain. I use to take 2 XS tylenol per day to take the edge off and now I don't take any for about 1-l/2 weeks. A one or two White Willow Bark for taking the pain edge off works good now.

To Nitrams2000

Before I leave for the day, I have a question. You said in one of your last posts that you just had an MRI.
Why was that not done when you first saw your ENT guy?
I do not get it, some of these doctors are really failling us. It has become standard that with an onset of sudden deafness an MRI is ordered.
You regained your hearing, that is great, but your ENT did not know that initially and should have ordered an MRI right then and there.
Hope your MRI will be OK
Take care

Hello Joyce - Thanks for the tip for the medication that helps you sleep. I will try that one.
Thanks again and take care

to hope. and joyce

I dont know why they took so long. infact all 3 of my doctors did not see it to be nessacery. I had to tell them that I really wanted one. Dr. muriel granted my request but dr. atkins said he would do it if i wanted but he felt based on my symptoms, age, and resulsts on other test that it would not be something i needed. I had it done anyway but god i hope they are right and it something i didnt need. i should find out something tomorrow.

I still get jetters sometime. I think im just a stressed out nervoous wreck. i think if i was still in college or younger i would just smoke a whole bag of pot. lolol but i dont do that no more. :)

as for sleeping medication. i got a winner for you guys. i have a natural herd i have been taking thats non addictive, that just about knocks you out and you wake up with no drowsyness. itsa great harmless and its called 'melatonin'

back on diet. went from 200 to 215 with all this mess. now im back down to 211. 11 pounds to go. I still get jettery sometimes. i wonder what that wierd feeling is. been of steroids for almost a week now so i dont think its that. maskes me wonder with my muscles in that area being so poor and still haveing that feeling if i had a small stroke or sometinhg. HHHMMMMM

Hi,

If you type 'chemical perfusion of the inner ear' into google the article states that the time window for steroid perfusions ' can be up to 6 months', which is interesting.

best wishes

Hi Rosetta
Thank you for letting the forum know about this article on chemical perfusion of the inner ear.
I am a bit confused there is also talk in that article about gentamicin, and that item is big on the list of ototoxic drugs......interesting indeed.
I am a patient of a famous clinic in New Egnland. None of the doctors there told me anything about this either.....
I have the feeling they are as confused as some of us are....when it comes to ear problems....
I am speechless
In any case thank you so much again for the info

rosetta,

thats if your hearing loss is indeed 'chemical perfusion' and I dont know anyone in the world that waited that long and got the hearing back.

The theory for most ear doctors. is that there is swelling and inflamation to your inner ear. what causes it could be 1 million things but the sweling is there and if you dont get it down then that affected hair of that area will be damaged or even die. This makes sense because allot of pople say they get partial hearing back which would explain the damaged area, or people say it got better then went away completly. this would also explain how this damaged area dies from the inflamation. I would think the chances would be better if you got on it right away. I'm sure there is always a chance that down the road it may get better but why take that chance and it is highly unlikely. I know i'm scared to death of loosing mine again.

rosetta

i just red what your talking about. sorry i musunderstood you. that is actually very good news for people that there still is hope if you missed the window but I would still advise everyone to run to doctor as soon ass they can. but I like the article just the same. :)

Hi,
thanks for your response. I've looked back through the forum but can't see the name of the proactive ENT specialist you mentioned in London. I am also in London so I would be very grateful if you could let me have the name.
You're right about the blase attitude of the ENt's in the UK.. it's frustrating.

best wishes.

To all - This sudden deafness seems to strike a lot of people lately. I stay in touch via email with some of my former colleagues and soon after I had an onset of SSHL, a colleague from our Germany office emailed me that it happened to him (4 weeks after my onset). But he got spontaneous recovery in a matter of several days.
There was somebody on this forum that told us that he/she wrote to Oprah, I am wondering if that person heard from the Oprah show?
I wrote to the congressman from the district where I live to see what could be done to make the public at large aware of this terrible affliction.
So far I have not heard back.
I wish us all best of luck