Intro: Tired and Desperate

[Rochelle]

I've read posts for hours since discovering this website a couple of days ago. Although I haven't found any definitive answers, it's nice to know that others understand what I am going through.

About me: I'm in my 40's and noticed hearing loss in 2005. After a hearing test in 2006 I was told I have otosclerosis, worse in the left ear. Not long after that is when I noticed the "ringing". It wasn't too annoying then, just disappointing upon discovery. White noise usually helped throughout the years to sleep at night, since we usually slept with it on anyway for decades before hand. I needed to get hearing aids a couple of years later to hear properly.
This year, 2014, I believe the T has gotten noticeably worse as my hearing has declined. Maybe surgery, fixing my hearing with a stapedectomy, will also lessen the T- I don't know- but I'm getting desperate to try anything.
Because of the hearing loss now, it's difficult to mask the T with white noise since I can not hear it as well any longer without my hearing aids. And, the T is louder than it used to be. I can hear it now even when I listen to music, movies or in the shower- which was my only solace. Now, it's all about distractions.
I had a bad "bout" in May with T, for about a week or so (trouble sleeping, anxiety, etc..) And then the annoyance subsided, (but not the T). I was able to sleep generally well again.
It's happened again this week, but worse. It's affecting my sleep- I get maybe 3 hours a night in the early morning after trying to get to sleep all night. It's bothering me during the day, during conversations, in the car, .... I don't know if it's the T that is so much worse that bothers me, or the depression I now have because of it. I'm hoping that this is just a bad "spell" and I'll get use to it again. I'm hoping.
My husband had made an appointment for me to get neuromonics- but after reading so much on this website, I cancelled it. I'm going to try the ACRN and Notch white noise first. I'm looking into the surgery too.
So, this is my T background, and where I am at currently. Thank you for taking the time to read this, if you do. And thank you again for this forum.

 

[attheedgeofscience]

So, this is my T background, and where I am at currently.

I believe you need to revisit the possible medical treatment options that there might be available to you for otosclerosis (before pursuing a treatment option aimed at habituation); this would include finding (and asking!) the best ENTs in your country for their opinion. As a starting point, you could try posting your question to Dr. Nagler at the Doctor's Corner on this site for his opinion. My suggestion.

 

[gary]

I've read posts for hours since discovering this website a couple of days ago. Although I haven't found any definitive answers, it's nice to know that others understand what I am going through.

About me: I'm in my 40's and noticed hearing loss in 2005. After a hearing test in 2006 I was told I have otosclerosis, worse in the left ear. Not long after that is when I noticed the "ringing". It wasn't too annoying then, just disappointing upon discovery. White noise usually helped throughout the years to sleep at night, since we usually slept with it on anyway for decades before hand. I needed to get hearing aids a couple of years later to hear properly.
This year, 2014, I believe the T has gotten noticeably worse as my hearing has declined. Maybe surgery, fixing my hearing with a stapedectomy, will also lessen the T- I don't know- but I'm getting desperate to try anything.
Because of the hearing loss now, it's difficult to mask the T with white noise since I can not hear it as well any longer without my hearing aids. And, the T is louder than it used to be. I can hear it now even when I listen to music, movies or in the shower- which was my only solace. Now, it's all about distractions.
I had a bad "bout" in May with T, for about a week or so (trouble sleeping, anxiety, etc..) And then the annoyance subsided, (but not the T). I was able to sleep generally well again.
It's happened again this week, but worse. It's affecting my sleep- I get maybe 3 hours a night in the early morning after trying to get to sleep all night. It's bothering me during the day, during conversations, in the car, .... I don't know if it's the T that is so much worse that bothers me, or the depression I now have because of it. I'm hoping that this is just a bad "spell" and I'll get use to it again. I'm hoping.
My husband had made an appointment for me to get neuromonics- but after reading so much on this website, I cancelled it. I'm going to try the ACRN and Notch white noise first. I'm looking into the surgery too.
So, this is my T background, and where I am at currently. Thank you for taking the time to read this, if you do. And thank you again for this forum.

I am sure you have tried running fans at night, I run 2 or 3
If you are not aware, there are hearing aids/masker built into one unit. They are expensive, I have only one, it was $900. two years ago, it's a Moxi-Kiss by unitron here is a link:
http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0CDwQFjAA&url=http://www.audiobm.rs/download/unitron/english-moxi-userguide-kiss.pdf&ei=BB8JVMy6Ioz5yQT7uYDYCw&usg=AFQjCNGx3pP2Yz4Rd2JIW2yd5GoL4U80Zg&sig2=N1EUywD-A0HSw2mUDbmXew

 

[Karen]

Hi, Rochelle, and welcome!

Two doctors have told me I have otosclerosis, too. My tinnitus was mild, and I had some hearing loss, in my right ear, which wasn't bothersome --- until I took a blood pressure drug four years ago. Then, my tinnitus got much worse, and I ended up with pulsatile tinnitus as well. More than one doctor suggested a stapedectomy, but not to cure my tinnitus --- only to improve my hearing loss. I have so far opted not to have this procedure, because I was concerned about making my tinnitus even worse. I'll be interested to hear what you decide to do. If you ask Dr. Nagler about it, I'll be interested to hear his response.

 

[_Steven_]

I think the best option is to plan an appoitment with a ent @ university hospital to discuss the medical options available. If its a middle ear problem it could be fixed. Better hearing will result in softer tinnitus...

 

[Rochelle]

Thank you @attheedgeofscience , @gary , @Karen , and @_Steven_ for your input.
I have decided to meet with the experts again, I originally had went to the House Clinic, which is supposed to be at the top of the field too, at the time quite by accident (thinking my ears were only plugged). Looking back, maybe it wasn't an accident after all. I didn't even know the reputation of the place before I had went.
I have kaiser insurance now, so I need to work on changing insurances. Otherwise, I'll pay cash if I have to for the surgery instead of using Kaiser doctors.
Until then, I took melatonin last night for the first time in my life, 3mg, it didn't help much. I got a massage today to help me to relax. I feel like I'm on focusing too much on this and it's magnifying it, and it's caused some depression. I've never been depressed before either. I'm hardly sleeping, hardly eating- what's more depressing- is that excessive sleeping usually accompanies depression- and I don't have that! (my attempt to be light-hearted). It's frustrating, I was sleeping a week or so, what happened so suddenly that this is bothering me so much? (venting)
Thanks again for the input everybody! It did my heart glad.

 

[attheedgeofscience]

Until then, I took melatonin last night for the first time in my life, 3mg, it didn't help much.

6mg Melatonin, ½-hour before bedtime is standard protocol. Therapeutic range (as a sleep remedy) is 5-10 mg. For severe tinnitus, Melatonin will not be sufficient. But it is a good starting point (before moving onto real sleep aids with plenty of side effects).

I would still open a post with Dr. Nagler if I were you (re. surgery).

 

[jazz]

@Rochelle What type of melatonin did you take? In general, melatonin wears off quickly and that's why it's important to get a sustained-release version. I used to take 3 mg, sustained release nightly. It may also be additionally useful to take 50 mg Benadryl with the melatonin. Benadryl is an antihistamine, but it also makes people sleepy. It is commonly used in OTC sleep medications. I still follow that regiment (melatonin and Benadryl)--though I've reduced the melatonin--and it really helps me sleep through the night. I also use a hypnosis app that helps me fall asleep; sometimes I have to run it two times, but it does work for me.

Below is a link to the hypnosis website; you can read about the author there. He seems to be well qualified and not gimmicky. You can download the app on iTunes or Google play. The app is named Deep Sleep. I won't speak for his other apps, though. In general, I'm not a big fan of hypnotherapy.

http://www.hypnosisappstore.com/sleep-deeply.html​

And I agree with everyone to look into surgery. It probably will help with your tinnitus. Here is an excerpt about tinnitus and ostosclerosis:

Between 40% and 65% of patients have tinnitus (ringing in the ears) (Gristwood & Venables 2003, Sobrinho et al 2004). In about half of all patients, there is a family history of similar problems. Tinnitus appears to improve following surgical intervention in a number of cases, since "the conductive hearing deprivation produced by otosclerosis is associated with limited and reversible modifications in the central auditory pathway that are linked to tinnitus"(Deggouj et al 2009).
​

Here is a encouraging research report from 2007:

Adv Otorhinolaryngol. 2007;65:343-7.

How does stapes surgery influence severe disabling tinnitus in otosclerosis patients?

Oliveira CA.
Author information

Abstract
Tinnitus is a common symptom in otosclerosis patients. Many papers have been written about tinnitus outcome after stapes surgery. However, none has attempted to quantify the intensity of the symptom pre- and postoperatively in order to evaluate the influence of surgery on the degree of annoyance caused by tinnitus. Severe disabling tinnitus (SDT) is defined by Shulman as a symptom severe enough to disrupt the patient's routine and to prevent him from performing his daily tasks. We have studied 48 consecutive otosclerosis patients by means of a visual analogue scale measuringtinnitus intensity before and after stapes surgery. We have accepted tinnitus as severe and disabling when the symptom score was 7 or above in a visual analogue scale from 1 to 10. Of 19 patients with preoperative SDT, 10 reported complete remission and 7 reported significant improvement. Two patients had no change and none reported worsening of tinnitus after stapes surgery. We conclude that stapes surgery can improve SDT significantly in 90% of otosclerosis patients and is very unlikely to make the symptom worse.​

Take care and keep us posted!

​

References:

http://american-hearing.org/disorders/otosclerosis/

http://www.ncbi.nlm.nih.gov/pubmed/17245070

​

 

[Rochelle]

Thank you @jazz for addressing my concerns so thoroughly, I really appreciate it.
I did use melatonin last night (3mg) w/ 50mg Benadryl. I didn't fall asleep right away- took a fews hours- but I did sleep longer than I have been. I will try the sustained release melatonin.

I might do the hypnosis trick too, a soothing voice would help me fall asleep I think too. I think that's what I did sometimes by putting on an old classic movie on w/ my headphones to fall asleep to.

That's hopeful information about the stapedectomy. My concern is that I've waited to long to have it, and the tinnitus is not reversible. From what I've read with the different theories w/ acrn, and others, it's to be theorized that when the auditory pathway is stimulated again in that range than the tinnitus will cease or lower because of less firing by those particular neurons? In addition, if I use hearing aids currently, why does my tinnitus get worse? I'm wondering if it's because it's artificial hearing, and they're not not 24/7. Anyway, at least if my hearing improves, my tinnitus won't be as noticeable and will take a backseat again.

I will post any updates. Again, thank you for your time! I'm grateful.

 

[Karen]

Rochelle,

I'll be interested to hear if you decide to go with the stapedectomy/stapedotomy surgery. I have irreversible tinnitus, too, plus pulsatile tinnitus (right ear only). It would be great to hear from someone on this board who has the surgery with a successful outcome.

Jazz --- Thanks for posting that information about the outcomes of tinnitus patients after stapedectomy. That is very encouraging. Can anyone else on this board comment on their stapedectomy experience? How did it affect your tinnitus?

 

[ampumpkin]

Hello everyone,

My dad is 62 years old and had otosclerosis also. He had hearing loss but no T. He went throught the surgery stapedectomy in 2005 which was successful (both ears). He recovered his hearing. The surgery itself was fine and didn't create any problems.

Nowadays, he does have episodes of T that last a few days but it doesn't seem to be related to the surgery from 2005. When he was about my age (31), he was a helicopter pilot and didn't wear ear plugs. So I assume he must have done some damage because of that.

 

[ampumpkin]

Regarding the T my dad has, sometimes it lasts 2 weeks and goes away completely. He told me it is VERY loud, he can hear it over the shower. But for some reason, it doesn't bother him one bit...

What I remember from the surgery is that his ears bled a lot and he couldn't do anything too physical for one month.

 

[Karen]

Did your dad have the surgery on both ears at the same time? These days, the doctors recommend having one ear done at a time.

I'm glad to hear that his surgery was successful. That's very encouraging! Thank you.