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Hi everyone !
I'm French but not many forums on french sites about sshl ! I too experienced this s..t in february ! Since then I did some research about it and it's amazing to see how this illness is mysterious and misunderstood. However I found the german sites to be the most interesting and most of them relates sshl to mental stress which is (at least in my case but seems to be general) probably right. Were all of you stressed/depressed when that happened ? Just curious to confirm the link...
Take care !
 
saucix last decade
Hey Mark,

thank you very much for describing the process for direct application of prednisone. I am definitely a baby when it comes to undergoing anything remotely invasive. It doesn't sound all that bad though, to read your description. You and I seem to be having a similar experience so far. We both have a perfect good ear and similar losses and recoveries in the affected ear. I'm hoping that the direct prednisone will suddenly kick in for you. You are taking it right on schedule so you can't say that you aren't doing everything you can. I hope that it isn't too late for me to have good results. I am going to get a list of ENTs practicing in nearby Portland from my insurance.

School is starting for my youngest today. Life keeps rushing on whether I can keep up or not. It's hard just to talk on the phone, for instance. As I said before my own voice causes me pain. So, I'm becoming a bit reclusive..a tendency I already had. I notice myself adapting too though. I smile at people more than before because it is such work to communicate. I use my face to let them know that I'm trying to understand and just ask people to 'say again' when I really have lost them. I'm sure everyone here can relate.

I am just hoping that our hearing sneaks back up on us soon. It's more important than ever to keep working to take care of things like relationships, diet, interests etc. If I let myself get depressed I might not get back on my feet very easily. I feel very sad about not hearing music, people's voices and natural sounds with my right ear as I did. I have a real appreciation for what I hear with my good ear now.

Mark, it's funny that you describe the sounds you hear with the SSHL ear the way I think of them. The bad tinnitus sounds are metallic, harsh and computer like. But, similarly, some of the good sounds, when my ear takes a step towards being better, are busy, small melodic chirps and tones that make me picture little guys with hardhats at work making adjustments and refinments (maybe like from 'Fraggle Rock') Okay, I might be going off the deep end now! Well, keep in touch and be sure and take your vitamins including Zinc Picolinate(upper limit 40 mg.s per day I'm pretty sure.)I read that the greatest concentration of zinc in the human body in is the cochlea.

Sincerely, Frogs
 
sweetsoundoffrogs last decade
Hi Saucix,

I must answer your simple question about whether people on this forum have a stress component. For myself, oh yeah! I never expected for my life to go the way it has. I have two wonderful sons. But I have barely survived a really horrific marriage and separation by the skin of my teeth and am not sure I'm yet out of the woods.

I started out young with all of the advantages of looks, smarts, education and got taken down like a stone by one moron. I began not being able to sleep early in our marriage when I had been able to sleep easily all of my life before. That was a big clue. By the time I really figured out how hopeless and bad the relationship was I had two small children to care for by myself. I hate weak selfish husbands who take advantage of their wives while they are just trying to be good mothers to small children! I feel amazed and cheated when I see women who have good husbands and fathers for their children.

The stress that came of this one relationship has been something I never knew could exist. It seems like my SSHL has happened when I just didn't have room for anymore. One doctor I saw said I have ptsd now. I too wonder if other people with SSHL have more stress than average. Thank you for asking, Saucix.
 
sweetsoundoffrogs last decade
Hi anitime,

I want to say how much I appreciate reading about your experience. I had vertigo for just one day. It was unbelievably awful! I could hardly walk to the bathroom at the worst. Although I often feel disoriented I don't have vertigo like I did at first anymore. It must be very difficult to deal with that on top of deafness and tinnitus. I know what you mean when you say that you never thought that this would happen to you. I still just can't believe that I lost the hearing in one of my ears, 6 wk.s later. Fear of the next flu/virus, trying to get medical and social support..it's all really hard. Even though I don't answer most posts I read them all, have learned so much and feel less alone. Thank you.

sweetsoundoffrogs
 
sweetsoundoffrogs last decade
Hi sweetsoundoffrogs - you have the classic triad of Menieres symptoms - vertigo, tinnitus and hearing loss. How has this been ruled out?
 
JeWeL41 last decade
Hello All
I do not have much time anymore to check into this site. But my problems remain the same. However I try to take it one day at the time.
These days I am very busy with the 'Say What Club' and therefore rarely check into this forum. But I must say that when I first had the onset of SSNHL I was so grateful for this site.
Some of my friends here got their hearing back and I am so glad for them.
I did not but that is life.

Take care

Hope01
 
Hope01 last decade
Stress? Yes, most definitely... My husband was deployed to Iraq for the 3rd time in 5 years, and we had just passed the 1 year-mark of his deployment, the 2nd Christmas without him in a row, I had 3 small children to care for by myself in a foreign country (I am German, living in the US) without family near by. His father had passed away during this deployment and I was very worried as to how he would cope with that loss, being where he was. So, yes, stress was definitely a factor, and I too have read about this on most German websites. Also the approach of dealing with onset of SSHL in Germany is completely different, but not much I can do from here now... But again, life is good, I am taking it one day at a time, still no hearing back but I am coping!
 
sahmof3babies last decade
Stress...sahmot3babies, you have my utmost respect and prayers.

I experienced SHL on January 18 and have not regained any of my hearing loss, in fact, it has gotten worse over time and seems now to be stable. I have an atypical hearing loss pattern which is like what happens when one is in an explosion. People said to me 'what is it that you are avoiding hearing'. I actually knew that the question was really 'what am I supposed to be listening to.' And part of the answer is 'my body.'

My SHL was the second unexplainable medical problem to come upon me in three months. I am absolutely sure that the severe stress of my work and the way I deal with it are the cause of both conditions. I cannot explain this but I know it to be true.

For my first injury, which was a root nerve injury to my C7 cervical spine, I ended up using John Sarno's book 'mind over back pain' to deal with it. If you are interested off line, I can give you more info about this. The point is that for me, stress is the cause of my SHL and I am trying to work in that way.

Blessings to you all,
 
SBBBG last decade
Hi there fellow SSHL (or SHL)-ers:-(
This is a whole new universe I had no idea existed less than a week ago... but here I am, one more 'case'.
Last Tuesday 9/2 I started hearing noises in my one - or both - my ears (as I do not recall) and, a couple of hours later, my right ear shut down completely (my left is near normal condition). Next day (9/3) I went to the Emergency Room where I had an MRA/MRI and was referred to an ENT doctor and was diagnosed with SSHL. I also had blood drawn but I have not received any results yet. My next appointment with him is on 9/10.
The treatment I was given is as follows:
Prednisone (20 mg): 2 tablets in the morning + 1 tablet evening (total 50 mg/day)
Pentoxifylline (400 mg): 1 tablet x 3 times daily (total 1200 mg/day)
AcipHex (20 mg): 1 tablet/day (total 20 mg)

As of today - 9/7 - I do not see any improvement in my hearing in the right ear.
I have been reading a lot from this forum and it looks like most of you were prescribed 60 mg Prednisone. I was only prescribed 50 mg. Could this be ab issue? I am 37 yo, female, about 135 lbs. I know the dosage is crucial for the first couple of weeks, and I really want to do things right... at least I can say I tried... I am pretty scared and desperate.
As I live in Orlando, I came across one clinical study (otosurgery dot org slash SSNHL_studyoverview dot htm)which has one of the sites in Gainesville, a couple of hours away from where I live. I contacted them tonight and hope to hear back from them soon. In the meantime, I would appreciate if you could share any knowledge regarding the right amount of Prednisone.
Thank you all for this wonderful forum - I have learnt so much from your experience. My heart goes out to single one of you - I hope there is a light at the end of the tunnel for all of us.

Steph
 
lsb57 last decade
Hi again,

I guess my math is not at its highest tonight. I have an answer for myself. I AM actually taking 60 mg. Prednisone per day (20x2morning +20 evening), which is, as I can see, the correct dose.

Take care and get (even if a little bit) well!
 
lsb57 last decade
Steph,

I am sorry to learn that you had a sudden hearing loss. In my case what really helped was getting a steroid injected into my inner ear. I suggest that if you saw an ENT who works in a hospital connect to a Medical school, he/she may give you shots of steroids. Local ENTs not working a hospital don't do this frequently enough. Oral prednisone did not help me. I don't think 60 mg versus 50 mg/day would make the difference, but please insist on shots quickly and don't accept any delays as time is crucial. I got about 4-5 shots, every two weeks and they really helped. I could feel the difference within a day after the first shot.

All the best!

Regards,

ALC123
 
ALC123 last decade
That is so kind of you, ALC123. I will contact my ENT immediately regarding that - he might do that.

I am a bit confused, though. I read about a couple of options regarding the shots. Are you referring to shots of Prednisone in the ear or shots of Decadron?

Day 6, no improvement...

Thanks,
Steph
 
lsb57 last decade
Dear Steph,

I am not sure about the name. It is definitely a steroid. The ENT will know what is exact name. Many ENTs do inject this steroid fluid in the inner ear after numbing the the ear drum. Those who are in the hospital setting probabaly do it more often than those who are not in the hospital setting.

All the best!

Regards,

ALC123
 
ALC123 last decade
ALC123,

Thanks for the additional info. I called my ENT and was told that he will definitely add shots at my 7 day visit, if there is no improvement. I thought the shots are INSTEAD of the oral Prednisone, but they assured me they were ADDITIONAL.

What was your experience? Did the shots supplemented or replaced the oral Prednisone? When did you start the shots? How many shots did you do?

Thanks,
Steph
 
lsb57 last decade
Hello Steph,

I am very sorry to hear that you have joined in on this forum - and trust me I can relate to your situation. It is very scary. I am sure that you have read some of my recent posts and I also had complete hearing loss at the onset. It came back to 20% with oral prednisone - and the initial improvement came after 4 - 7 days. Since then, it's stayed the same.

I had one shot in the ear after two weeks and it didn't help. ALC123 had great success. From the stuff I have read, the risk is small and the potential upside is certainly worth the risk. For me, since the first shot did not help, I will likely not go back for more. At this point I am guessing that what I have regained is my new status quo - though I am certainly staying hopeful for more improvement. I go back to the doctor in about two more weeks - which will be 5 weeks after the onset.

Have you regained anything? Did you completely lose hearing at the onset?

I certainly wish the best for you and hope that you start gaining some hearing. Please let me know if there is any way I can help.

Mark
 
MarkLM last decade
Bonjour Saucix,

I think I am one of the few who wasn't stressed when I lost me hearing. I have a good job that I (usually) like, I'm in good health, exercise frequently, surf, swim, happily married and generally have a smile on my face. So, either I have some deep seeded stress that hasn't come to the surface or I don't quite fit the norm for SHL. I am curious, however, what the Germans recommend for treating SHL. I am open to everything. I've done the steroids, and I am currently taking some herbal medications and getting acupressure. And I'll try more if it might work !

Thanks

Mark
 
MarkLM last decade
Hi Mark,
Thanks for your reply. Today is day 6 and I think I did not get anything back... but am hopeful.
What is difficult for me right now is the balance that I am still missing and, of course - the fullness in my ear. I don't think I have vertigo, as my head is not spinning. I just cannot walk straight enough - I am not sure if this will adjust over time. I am also having a difficult time driving the car. As far as I read, if you have this kind of dizziness, your hearing might not come back at all. Even with all these, I am still hopeful – statistics are just statistics.
I have taken Prednisone during my pregnancy with great results. I am not afraid of the side effects, as it helped me give birth to a wonderful child and I would do it again in a heartbeat. So, to all of you who worry about the side effects of Prednisone, just do it and do not think about those. I feel doctors sometimes exaggerate this, so you know what is the worst to expect.
I would continue with the ear shots until the end – even if that would not make any improvements. The pain goes away, but you never know if they help if you do not try. I am determined to get them, for as long as I can.
I wish us all good luck!
Regards,
Steph
 
lsb57 last decade
Hi Steph,

The shots were in addition to the Oral prednisone. My ENT gave me shots every two weeks. The first shot was about 13 days after the onset of SHL. My improvement was dramatic after the first shot (within 24 hours) and then the improvement was less and less after the subsequent shots. So he stopped giving me shots after about 4 shots. My ear is functional (say 64%)though not 100%. I strongly believe that my problem is due to mercury in my tissues (from silver fillings in the mouth) because I had Bell';s palsy recently. I don't believe that all this is coincidental.

I am taking acupuncture treatment and Chlorella for mercury removal.

Do you have any old silver amalgam fillings in the teeth?

Regards,

ALC123
 
ALC123 last decade
Thanks, ALC123. Thanks for sharing all that with me. Yes, I do have amalgam fillings - not too many though :-) You might have a point here.

I will also start acupuncture this afternoon. I will do everything I can until it is not too late.

My first shot will most probably came on day 8. I am so looking forward to it and I am so hopeful. I am not giving up hope yet.

All my best to all of you,
Steph
 
lsb57 last decade
Steph,

In a previous entry I talked a bit about an Italian study using the shots AFTER the oral prednisone did not work. (see the information below). You can easily find this paper on the internet - and if you can't find it, I'll e-mail it to you.

I just saw while writing this that you sent a reply. I only had a little bit of balance problem, and one mild to moderate vertigo episode after 10 days. From everything I read, the balance problems do go away relatively quickly.

I hope you can get some of the hearing back. Going from 0% to 20% made a big difference for me in terms of figuring out where sounds are coming from and dealing with crowded situations. It's bad at 20% hearing though not impossible. At 0% hearing, it's a real challange.

Finally, my doctor cautioned against too many shots. He has had one case where the persons hearing got worse - after initially getting better. And the Italian study had a case where three shots caused things to get worse. Again, this is opposite of what ACL123 found. I am definitely not trying to scare you at all - and I haven't heard anyone say that one shot has caused problems. I'm just passing on info ! I think that there is alot of unknown and everyone is different.

Now that I have 20% hearing and the first shot did not help, I will likely do nothing more on the steroid side of things. I am at a point where a hearing aid will help, and I don't want to go backwards to the point where a hearing aid won't do anything. Hopefully your shot will be much more successful than mine !!!

Stay positive and best of luck. Certainly let us know how things go with your shot ! Also, please let me know if the accupuncture is helpful.

Mark


'There is a paper entitled 'Transtympanic steroids in refractory sudden hearing
loss. Personal experience' by Dr. Dallan in Italy that discusses the effectiveness of oral steroids followed by shots. The paper shows about a 70% success rate with this treatment -though there were only 10 patients. I e-mailed Dr. Dallan - in Italy - asking him if he has more data. He e-mailed me back in two hours, and said that he is up to about 40 patients and slightly less than 60% success with little to no downside. '
 
MarkLM last decade
To the person writing from France (saucix), I had (still do) SHL 2.5 years ago, with tinnitus. Went to 6 different specialists, ranging from ENT doctors at UCLA to Mayo Clinic physicians and none knew how or why we get this. They just kept telling me that it was idiopathic. However, one doctor did tell me that long term stress sensitizes the nerve in the ear and that, yes, stress, especially the kind that we feel over long periods of time, can make you vulnerable to SSNHL. For me, it was especially true. I was so unhappy and stressed out during that period of my life. Hope you feel better!
 
nvega last decade
Mark,

Thanks for all the details - they are extremely helpful. I did read Dr. Dallan's paper and now I understand your point regarding overdoing it. I guess what I am going to receive at the 8 days follow up will be Decadron, not Methyl-Prednisolone + NaHCO3, but I will certainly ask about this as an alternative to the oral Prednisone. Who knows? So far I have no more hearing to loose :-(

The visit to the acupuncturist went well. He was very confident that we can get (at least) something back. I think I have made a great choice with him, as he has a lot of genuine Chinese training and experience (was also a MD in China for - I think - 20 years). I do not think I got any hearing back, but definitely my balance was better after the first session. Even my head feels better (the 'congestion' is still there, but it seems a little more localized as opposed to spread over half of my skull). I am going again every other day. And I am looking forward to my next session.

I think this will end my 6-th day of testing. Still no hearing whatsoever.

Tomorrow is a new day.

Take care & good luck,
Steph
 
lsb57 last decade
Hello Frogs,

How goes it? I was just up in your neighborhood (sort of) last week visiting family in Corvallis. Thanks for arrnging the beautiful sunny weather !! If blueberries help hearing, then I should be back to normal in a shortly. I brought home about 20 pounds !

I can certainly relate to the pain from noises. The flight attendant messages on the plane were awful. I think the speaker was on full blast and right over my seat. Things like this will be tough to get used to !

Hope that you're feeling better and that the hearing is creeping back. My hearing seems to have leveled out, I don't get as many 'good tones' in my ear. This is making me even more convinced that the tuning fork sounds that I occasionally heard were real progress. How about you? Are your 'liitle guys with hardhats' still working?

Stay positive - I'm sure we'll all work through this - we have to !!

Mark
 
MarkLM last decade
Hey Mark,

I can relate to just about everything that you have posted in terms of my experience since my SSHL July 17. I am speed reading over everything I have missed of everyone's posts. The one thing that we don't have in common is stress. I'm glad that you don't have that. An SSHL is stress enough!

I can hardly get on the computer because school has started. Also, there was a big hitch in finances for me because of a child support problem. That took about all of my attention. Stress and survival issues could actually interfere with my recovery. Post separation from my kids' dad I have no car and must get a ride to every single appt. It's hard. So, I haven't acted on getting the (inter-tympanic?) steroid shots as I might have, and now it's been almost 2 months since my SSHL. I feel I'm missing an opportunity. There's just too much as a single parent. I can certainly relate to the woman, with 3 children, from Germany whose husband has served several stints in Iraq. I rush when I get on this forum but I try to get all my facts right.

It's really important to have all of our facts right because we SSHL sufferers are dealing with high stakes! I really pay attn. to everything I take time to read on this forum. I appreciate how knowledgeable posters like ALC123 are. And, I very much appreciate your remembering me, Mark! I understand your wanting to preserve the little, but extremely important, bit of hearing you've gotten back. I really need to be retested. It is so hard to be sure whether I'm hearing more with my r. ear or if my extremely tuned up left ear is just compensating. This is the world's longest post so even though I have much more to say I'm going to quit and give someone else a chance!

Last thing, Mark, funny, you agree those little tuning up sounds are very important. I just feel that too. I feel if I could have continued oral prednisone my r. ear might be better now. Today my SSHL (right)ear actually hurt. I count that as feeling coming back and positive. Keep writing me now and then, Mark. Freeze some of those blueberries for winter!

Sincerely, Frogs.
 
sweetsoundoffrogs last decade
P.S. Mark,

I still have tones in my SSHL ear. They are very clear, short and musical. But, they aren't as loud and persistent as before I quit the prednisone. One night when still on prednisone, I remember, the same note would play every few seconds as I tried to talk to my youngest. It was when the tones were strongest that I got most of the hearing, I've got now, back. I feel that most of the hearing I have back is focused on lower sounds. This, as you wrote, has been very important to my balance and being able to tell where sounds are coming from even if I can't hear well with my right ear. Any amount of hearing back is EXTREMELY important. My hearing higher pitched sounds is dim and distant and trying to hear, for instance, people talking on t.v. with my right ear makes me feel very scared and claustrophobic. One person posted me, many posts back, that maybe I have Meniere's. Both ears pop all of the time. It scares me when my left ear pops a lot some days.Sometimes my left ear rings a little too..very scary. But, so far my left ear is good. I avoid loud noise if I possibly can. That airplane speaker must have been hell!

Well, I meant to just P.S. about the tones leveling out for both of us. I guess I have a lot to say. Take very good care.

Frogs.
 
sweetsoundoffrogs last decade
Hello Steph et al.
I woke up on 9/4/08 with total SHL in my right ear and was able to get into my Dr. after obliging his receptionist with a home remedy before she would squeeze me in. I was able to get an immediate referral to an ENT across the street and was able to start the 60 mg of prednisone + 4000 mg of acyclovir per day w/in 6 hrs of the notice of symptoms. I spent the weekend feeling as if in a state of emotional shock, until my wife found this website. Reading Steph's
account of her travails made me feel a lot better, knowing that I am not alone in this predicament. The hyper-sensitivity of my left ear and being more cautious when I cross the street have been the hardest aspects to deal with. Still no return of hearing in my right ear, but this website has been more encouraging than the myriad of
medical journal articles I have perused. Thank you, Steph and all, for being here.
It's heartening to know that
I'm not the only one out there.
 
sandmanranch last decade

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