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Guys...Brian again.
My wife scheduled me for that doc again today ahead of my MRI next wednesday.
Took another hearing test and show a 5db improvement which everyone agreed wasn't really anything.
They tweaked the hearing aid they gave me for my better ear, the one that just went bad on Sunday, but it isn't helping much.
They gave me steroids directly into my right ear..the really bad one, which was unpleasant to say the least.
It now feels clogged and I get some feelings of vertigo every now and again but this is normal.
Ill keep you updated.
 
Progressiverain last decade
My story (a positive one so far):
50 year old female; SSHL on right side on June 24/10; I guess I 'woke up' with it and only noticed when I tried to use the phone; usual panic & shock - got into see my GP next morning; put on 50mg oral Prednisone - felt an immediate improvement but next day total hearing loss; audiology test was VERY depressing at -85 Db across all frequencies = 'severe/profound' loss; hearing aids weren't even an option; I think the Audiologist basically wrote me off; my GP however was still encouraging - said that you really can't tell how much is perm until 4 to 6 weeks so extended my 50 mg course of Pred to 2 weeks and taper over next 3; in the meantime, raging tinnitis complete with 'whooshing' sounds, running water, beeps and crackles; felt like head was in a tunnel most times; luckily no vertego and able to sleep fine with a fan; attitude at this point was acceptance with whatever God handed to me and resolve to adapt; didn't change anything lifestyle wise - continued to do my daily 30 minute run and exercise (am convinced that the blood flow is good for the bad ear!); flew to Florida for vacation - no negative effects from the flying & maybe even positive (?); started noticing daily incremental improvements like dial tone on the phone was initially a faint then increasingly loud 'buzz'; got to the point where deeper tones came back and I could hear voices if spoke directly into my ear; finally here I am 3 weeks later and I could actually have a phone conversation on my bad rt. side!; Went for another hearing test on July 19/10 and Audiologist was totally shocked - she says she's never seen anything like this - almost complete recovery on the rt. side hearing - average +65Db across all freqs.; Will see the ENT in a couple of weeks to review my MRI and hopefully that will be all clear. My takeaways to date from this life altering experience:
- remain positive & accept your situation
- don't expect too much at any one time (cautious optimism)
- small incremental improvements are a good thing! (Brian hang in there).
- recommended reading - 'Lifting the Veil of Silence' - Susan L. Roberts - the 'affirmations' helped a lot.
- continue to live your life as you normally do as much as possible.
- get outdoors and be physically active.
- reconnect with your God(for me, definitely one of the pluses of this experience since I wasn't particularly religious b4 this).

All the best.
 
mjs_hears last decade
Dear Mis Hears,

That is WONDERFUL news, and it is great to hear that you kept your faith in GOD! I pretty much have the same belief. Though I want my hearing back to normal, we must say His will be done. But it is difficult, especially when tinnitus and hearing loss affect your life so dramatically. I woke up on May 24th (month before you) with hearing loss...and same as you...went to use the phone and could just barely hear the dial tone. Got prednisone like you for two weeks and some came back. Not sure if the prednisone did anything...or it just came back on its own. But the tinnitus was SO HORRIBLE I wanted to jump out the window. SO BAD that it was preferable to be deaf in that ear. Today marks 2 months since the hearing loss and ever so slowly things are coming back and I hope it stays on this track. I can hear better on the phone. If I try I can hear on the phone with the bad ear, but have to push my ear to the earpiece more..if I hold my hand over my good ear and listen with my bad ear...I hear better. I am not sure why. For whatever reason sound seems to aggravate it. If I am in a loud crowded area the tinnitus kicks up a bit. Used to be that if I put my chin to my chest the tinnitus would shriek wildly...or would get a whooshing sound when I shook my head. I've been going to TMJ specialist and many sings seem to be related to the jaw...since it is so close to the ear. Appears to be muscular in nature. Possible sternocleidomastoid muscle affecting the inner ear because it relates to the ear. Used to squeak when I chew...that has gone down a lot...chin to chest has stopped...shaking head still gets some whooshing but better. Continuing treatment with TMJ doc with dental appliance that should move the jaw forward slowly and alleviate stress on the muscles near the ear. All in all...better than I was. When it first happened...tinnitus was CRAZY loud and if I cupped my hand and clicked my tongue into my ear it made all kinds of wild crazy sounds...like almost the sound of a dial tone. VERY STRANGE. Hope you continue to get better. I sleep on my back now a lot to avoid pressure on the jaw. It's amazing how God can get your attention sometime. I have been reading the bible more and telling more people how important God is...and of course Jesus. It's a good thing. I'll say a prayer for you to fully regain!

God bless,

Russ
 
hopper0001 last decade
Hi All - I have bilateral sudden(ish) hearing loss. I lost the left ear about a week after the right back in September last year. I have not got a diagnosis yet and had a bit of a adventure leading up to this and just wonder if anyone has any clues...
Apr 09 2000mg daily fluxocillin for an abscess prompted me to lose 21lb within a few weeks. Reported the rate of the upset stomach but was told I must complete course of antibiotics. Had to see doctor as stomach trouble did not end after ending tablets. Soon after I got cellulitis on the top of my right ear and nose. More antibiotics this time crynthmycin (I think it was called not sure if it ototoxic). Medication did not clear up infection and saw a homeopath, who did. I then got painful swollen knees, feet and ankles and rashes on my arms, chest and scalp. I was at the doctors or phoning weekly. I was told my overactive thyroid was high and I was refered to thyroid specialist in Sept 2009. This was July 2009 and my GP told me to rest. August 2009 I started to have itchy ear and felt like I needed to pop them. Used olive oil and then earex. When I saw thyroid specialist I had lost 4 stonesb since April and had trouble hearing him. He said all symptoms we related to graves disease from thyroid but not ear
trouble and that my thyroid was poisoning me! I had letter from work saying they could no longer pay me and my partner had not worked for so long (he worked away) as he was looking after me. Decision made for me to move back to parents whilst I recover and me and partner give up flat and him concenrate on work. All very sudden decision I felt was made for me not between me + my partner. Anyway, stressful. One week before he is due to move away I wake up deaf in right ear, everytime I moved head I was sick. Doctor diagnosed inner ear infection and gave me antisickness pills. I stayed in bed for a week. Then my left ear went but without the sickness. Doctor did come out and sent me to neurologist. Ct scan shown 'a little low signal hearing loss bilaterally and a little fluid or less likely inflamation around the lateral ventricles' I have not been able to get through a mri scan yet as I panic when I get the face mask on. I am claustrophobic and waiting to see if I can be put to sleep as diazipan hasn't worked. I eventually got a hearing aid last month for my right ear! So happy. Felt so isolated not hearing anything for all that time except the roaring tinnitus. Hospital should have given me hearing aid in january, admin error.

Any ideas would be most appreciated. Blood tests auto immune ear came back negative.
My sympathies with you all. This has been the hardest thing I have ever been through. I agree that prayer and faith and being grateful definately helps you through.
 
me-jt last decade
To anyone interested please read this- it talks about success healing SSHL with low level laser light. I am having success myself.

tinnitus.html" rel="nofollow" target="_blank">http://www.progressrec.com/curing-tinnitus.html
 
suncasa last decade
me-jt - what a hard time you've been having (that is an understatement)!! I'm so glad you have a hearing aid now - I can only imagine how awful it has been to have lost both ears.

Have you tried antiviral medication for your ears? I used to get itchy ears a lot, too. When I had my sudden hearing loss in May of 2009, I tried the steroids, etc, but the thing that worked in the end was a long course of Famvir (an antiviral med). My ear doctor refused to prescribe it (I'd read about it on message boards and in journal articles) but a different doctor was willing to. And since then I've seen my GP for another prescription when I felt the ear trouble creeping back again (and again it worked).
 
shortcake last decade
Shortcake,
Why did your ear doctor refuse to prescribe it and did you just go to another one to get it?
How long did it take for it to work and how long had your ear been effected before you started taking it?
I've lost both ears and am trying to explore every option possible.
 
Progressiverain last decade
Hi Shortcake

Thanks for ur reply :)

No, I've not had any medication for my hearing loss yet. I didn't get to see an ENT for 3mnths, fat chance of getting the steroids in time. Anyway what your saying suggesting is interesting as I have have mouth sores and sore throats for a year. Homeopathy and chinese herbs have cleared them up but they keep coming back. Did you have them or any other symptoms also?

Regards progressiverain. Hope ur coping well.
 
me-jt last decade
Progressiverain -

My otologist diagnosed me with endolymphatic cochlear hydrops, which is also called a-typical meniere's disease. Antiviral medication is not a commonly used treatment for this. However, in my reading on meniere's disease, I came across a message board on www.menieres.org.

This link is a whole collection of information on the use of antivirals.
http://www.menieres.org/forum/index.php/topic,23217.0.html

What I noticed was a lot of people who reported success with antivirals had just the hearing loss, like me!

My Otologist had sent me to a rheumatologist thinking my hearing loss could be auto-immune related. It was she who was willing to prescribe the antivirals, because she felt my bloodwork and the fact that I'd had a cold sore (these are also herpes virus) just before my hearing loss supported the idea of a viral cause. My GP was also supportive (and her research actually showed that antivirals are sometimes used for sudden hearing loss!)

My ear had been affected about 6 months when I started the medication. I saw improvement in about 2 weeks, and continued to see improvement over the next few months, until my hearing was back to normal. I took it for 3 months. I still have some ringing and sometimes fullness, but totally not bothersome. I did another 1-month course just recently as some symptoms were coming back. I have just stopped that, and hope that will be enough.


me-jt -

Interesting about the other sores. It does seem worth a try! Check the link I put above for more information on the journal articles about it. Also dosage information. A lot of doctors don't prescribe long enough doses. I was on Famvir for 3 months.

As for other symptoms, I did have a cold sore right before my hearing loss. And I've had itchy ears a lot in the past - less now but still occasionally, so I don't know if it's related or just allergies.
 
shortcake last decade
Short,
Thanks for the info.
I lost the hearing in my left ear over a year and a half ago and I had just gotten over a cold. I lost the hearing in my right ear about a week ago but as far as I know I wasn't sick in any way.
Maybe after everything else fails, which Im sure it will, I will try the antiviral approach. Can't hurt I suppose.
 
Progressiverain last decade
me-jt - which 'Blood tests auto immune ear' did you take? What lab did you use?

Progressiverain - have you taken any blood tests like me-jt did? If so, which labs?

mjs_hears - it sounds like you were one of the lucky ones and was able to reset your auto-immune system with the prednisone. I also did well on it, but unfortunately bounced back until I found the cause that haunted me for 3 years (type-3 IgG food allergies). I'm glad you are doing well, people who are still suffering need to learn what works for different people, I'm sure there is more than one cause and cure for this class of disorders (I hope laser light therapy works for some - sounds simple and non-invasive).

shortcake - 'I felt the ear trouble creeping back again (and again it worked)', sounds like me on prednisone. :-( Have you taken any blood tests to see if allergies are also at the root of your disorder?

Has anyone recommended or tried L-Glutamine and/or L-Cystine?
 
jhorowi1 last decade
Progressiverain - glad to give you another idea of something to try. I know it is exhausting trying one thing after another, one doctor after another!

jhorowi1 - I haven't done any allergy blood tests (yet). It is something I keep thinking about. Since things are going so well, I am sure I won't do that right now, but allergy testing is my next step if I have any more trouble.

And no, haven't tried either of the things you mentioned. I do take L-Lysine, which boosts the immune system and fights the herpes virus.
 
shortcake last decade
Russ: thanks for your kind words and well wishes. Fyi, my tinnitus is much more tolerable now since the recovery - just a background hiss which I can basically ignore most times. My hearing is getting better and better every day - feels near normal now.

Jhorowi1: Definitely the Prednisone worked for me and I am convinced that timeliness of treatment after initial onset was crucial in my case. Fyi, I have been told that my condition is not autoimmune but likely caused by a virus. The fact that the Pred worked likely rules out an acoustic neuroma but I will know more after I see the ENT to review the MRI.

Best wishes to all.
 
mjs_hears last decade
Mjs Hears,

Glad it is getting better. I still have some trouble on the phone, but thank GOD the tinnitus isn't near as bad. Mine I really think is related to problems in the TMJ joint. I get the tinnitus, but no pain...also THANK GOD for that! But the decrease in hearing is disheartening. Still there have been little improvements and that is always good. It's been 2 months and I take a lot of vitamins like E and Coenzime to help and I think they do. I think it is VERY VERY UNLIKELY you have any kind of acoustic neuroma. The fact that you have improved just about rules that out, but it's always nice to see 'exquisitely normal' on the MRI report like mine said. I was sweating it too! Damn those things cost a ton! $3,700.00!!!! Thank God insurance paid! I had to pay like $281.00, but better than that whole amount any day. Sometimes I think a lot of the medical community is just out to rip you off. It's ridiculous that half the doctors do nothing, yet want you to pay their bill! Good doctors are hard to find. A lot of ENTs I've been to are idiots. Just because they have a diploma on the wall they think they are God. I've found the older doctors to actually be better. Hope u feel better. Russ
 
hopper0001 last decade
Hi Shortcake-Thanks for the reading. I had blood tests done for the mouth sores + sore throat for b12, zinc + magnesium levels. I queried the results with my ENT's secretary + she said the doctor will write to me regarding the results, it seems something has shown up. I am going to call her again now + ask her to query the antiviral treatment + ask if I can give it a go. I don't have an appointment yet but since I have my hearing aid I am not afraid of pushing things, rather than sitting there wondering what the heck is going on. I had my back tooth extracted yesterday and the tinnitus is in full effect today.
Hi jhorowi1 - I don't know the specifics of the autoimmune test I had? I will check out your past posts.
It'll be a year in sept since this hearing loss + I'm just wondering how others with balance problems are managing. Mine has got better very slowly but I wouldn't be able to walk to the shops alone and without people thinking I've been drinking.
Keep smiling
 
me-jt last decade
Hi mjs_hears,

> I have been told that my condition is not autoimmune but likely caused by a virus.

I always thought that when a virus invades the body it triggers an auto-immune response; when the virus is killed you shouldn't have any more symptoms once the ear heals. Personally I don't think the doctors have any clue of the actual mechanism at play here.

(I think the MRI is a necessary precaution in case the Prednisone temporarily shrunk a growth. I wouldn't ever advise against one.)
 
jhorowi1 last decade
Hey guys. I've had a pretty long struggle with SSHL in both of my ears. I wrote a quick bio from start to finish of my experiences. I highlight what I did do and more importantly what I didn't do.
If you'd like to read it you can download it here:
http://www.customizeddesigns.net/hearingloss.docx
It's pretty long but it gives a no nonsense approach on how to deal with this crappy problem.
 
Progressiverain last decade
1. Last link-would like to read your story,but can you give us a link that doesn't involve us purchasing software?
2. Laser. I have ordered a home laser (from Japan), as has suncasa, to see if it can help with my hearing loss-tinnitus. I am told I was receive it & thus start its use in mid-Aug.
 
Fran C. last decade
Fran,
Purchasing software? It's just a word document. If it wont open in word it should open in MS wordpad, or notepad.
 
Progressiverain last decade
I've also though about the laser treatment. How much did you pay for it?
 
Progressiverain last decade
A bit over $400--I will email you.
 
Fran C. last decade
Hi- all I am having great success with low level light laser therapy. Originally having SSHL, I was eventually diagnosed with Meneires. I also tried anti-virals for almost a year but while at first they seemed work, my symptoms came back. I am now happy to report that my tinnitus is almost non-existant, fullness gone. I expect total and full healing. The laser helps the cells to regenerate and heal. You can read countless reports of success if you google Dr. Wilden and hearing loss or tinnitus. I am purchased the home system from Dr. Wilden and he is guiding me now on my treatment, Please don't give into to the hopeless diagnosis this country gives- The US just isn't up to the current technology. Good luck to everyone here.
 
suncasa last decade
progressiveran-i tried to email you-didn't go thru--go to konftec.com for info on the laser i ordered
suncasa-This is fabulous that you're having resultsso quicly!
 
Fran C. last decade
I would to start by thanking each of you for sharing your story and trials on this site. My sudden hearing loss occurred quite far from home, overseas, abroad, and the research and testimonials I was able to find here, not only encouraged me to push for a proper treatment thanks to your knowledge, but also comforted me as I found myself as well as the feelings I was going through in each of you.

I was lost, and completely shocked.

My sudden hearing loss began mid-June.

Everyone kept telling me, my ear was only plugged, that it was only wax. I finally went to a pharmacy - as some of you, I have not taken any prescription medecine for the past ten years and was hesitant to even put a chemical ear solution into my ear.

(I was already on day five since I had awoken with a wind-like sound hovering over my ear..) It resembled the blocked noise that often occurs on a plane, or the sound of a seashell one places over an ear to hear the sea. I had been very sick with a cold after a trip and had been overly congested. I assumed my ear was just blocked with excess waste that needed to be free. And I kept waiting to hear or feel a 'pop,' that would release some of the strain. I tried Hopi ear candles, still no freedom from this clamp over my ear.

Luckily, I asked the pharmacist how long the drops should take to clear my ear. If not, I probably would have waited at least another week before seeing a doctor. She said it should work immediately. I was on day five or six, but I still didn't want to put these harsh chemicals into my ear, and so I waited another two days before trying them out. They did not work. This was day seven or eight.

Later that day, I randomly stopped by an ENT office to inquire into the price of a visit thinking I was being ridiculous - and was in a white phase of shock as I left the office shortly afterward wondering how my life may have just dramatically changed. Would anything ever be the same? I felt as though I was mourning a death; my ear is a part of me...I didn't want to lose it. I was so dizzy in the beginning, my balance was totally off, it was terrifying. I went in for a second opinion the next day. The first doctor attributed my ear loss to either a stroke or a vascular condition (15 days of prednisolone and vascular medication). The second, to a viral infection. The first doctor however had left on vacaton, and thus, I began a short dose (4 days of medrol 16 and an antivirus and some nose drops) recommended by doctor number two. I could immediately feel almost an opening or liquid-like feeling when I took the methylprednisone. I don't recall exactly, but it may have taken a few days before I felt this. To me, to feel anything was refreshing, because since this had happened it was as if the inner part of my ear was numb. I didn't feel it in the same way. And I feel when this happens to you, you need to exercise your ear almost mentally to keep it alive - almost like to continue taking in the oxygen and I still exercise it now daily. Sometimes I hardly feel even a faint anything, but I try to keep at it, through a sort of form of meditation. My first hearing test after my loss (did not show much improvement) and my doctor did not seem to think I'd get the hearing back and wanted to stop with only the 4 days of steriods and 5 of antiviral medication. Thanks to your website, I was made aware of your real success stories and research including the intratymphanic steriod injections as well as the difficulties one might face regarding the dire need to act swiftly and the haunting deadline that faces someone who has suddenly lost their hearing to begin medication and as much as possible at that early on.

I am thankful to those of you who also posted your stories about having surpassed the limit of time to bring your hearing back. Your stories are encouraging in your acceptance, and also inspiring. They pushed me to research more, push for more medication, insist on the intratymphanic steriod shot - which I received 15 days after my hearing loss. Six days later I had already retrieved a large portion of my hearing. It worked amazingly for me. I am now on the final days of more oral prednisolone to retrieve the rest in hoping my loss is not due to a larger medical issue.

Your estimations on how long the wait was for medication to work also helped me relax as I waited results. I as many of the others on here, felt at times, it was possibly becoming worse, but in fact, I think it was my body becoming readjusted as my hearing returned. So if you are on prednisolone / prednisone / methylprednisone remember that your body has just endured a huge shock and each day is an adjustment. I had echoing in the first few days after my ear injection, I was afraid maybe something had gone wrong, but it was just starting to work. My ear was healed within 3 days and I was able to fly. If you are able to avoid crowded places in the beginning, the time when you are readjusting will become much easier. I was terrified - as my ear that endured the loss did not hear many frequencies, my entire balance was off - I would anticipate a noise from the left as only my left ear could hear it and would be shocked to see someone approach me from the right. I am still following a treatment to try to recuperate the rest of my hearing. It is hard to explain to others who have never experienced this but even knowing when it is coming back is extremely confusing as balance shifts, certain sounds are available, tinnitus changes (I also as some of you experienced the Loud Speaker effect where it sounded like I was slowly morphing into a robot. And am still noticing a sort of tone deafness when I sing. I can't tell whether or not I'm in tune or not...) But it all could be much worse. I realized how much I depend upon my eyesight and my senses (all of them!) And how thankful I am each day to see what I see, and to hear what I hear and to feel what I feel and to live. I still pray for the return of my health as I complete another round of steriods and await more tests. And tonight, my prayer, To all of you - that you find comfort and solace within your hearts, I thank you for sharing your stories which have in turn helped me, I am grateful. When in doubt or fear, pray. Miracles exist in many different forms.
 
Flower last decade
Hi Flower- You should really look into low level laser light therapy- especially since your loss is so recent.

Here is a link or you can email me for info.

http://healingmenieres.wordpress.com/
 
suncasa last decade
Thank you dear Suncasa,

I have looked into Hyperbaric Oxygen Therapy and laser for Sudden Hearing Loss is a new treatment I am only discovering on this website and your own. I do feel that whatever the reason (virus, circulatory, stress, illness, stroke, etc.) - that oxygen (lack of) did play a role in my hearing loss.

How expensive are Dr. Wilden's treatments? I imagine it must vary from patient to patient. Is it very expensive?

Thank you so much sharing your information.

Are there many constraints outside of wearing earphones to be followed after the procedure? Must it be started within a certain period of time after the loss to begin? Part of the major stress involving Sudden Hearing Loss, at least incurred by me, is the time limitation we seem to face in finding a quick resolution or jump start to keep our oxygen flowing at least in the beginning - and the complications in finding the right medical assistance or doctors who react abruptly and positively. I was very lucky with my last doctor (#3) who listened to me and was reactive to this situation as well as how I wanted to handle it. He went above and out of his way to help (and is still helping) and I am ever so thankful as I felt frusturated by the slow pace proceeding his intervention on my behalf; and the confusion of not knowing which medical route to take. All within these claustrophobic boundaries of time limitations.

The laser work seems fascinating. I am looking forward to learning more about these additional therapies (both laser and HBOT).

I am happy the laser light therapy is working for you and looking forward to hearing more about it(no pun intended...).

I suppose there are a few times throughout the past few weeks where a plethora of funny situations has occurred because of my hearing loss. It's good to remember our humour in these sorts of times. As well as to provide our bodies, spirits and souls with the conscious release of our frustrations, fright, anger confusion and fear of a rapid and sudden (and hopefully curable) change.

'What lies behind us and what lies in front of us are but tiny matters as compared to what lies within us.' -
Ralph Waldo Emerson

Thanks again for your help.
 
Flower last decade

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