Sudden and Unexplained

Hi all - "Sudden and unexplained hearing loss" is what they are calling what happened to me about 5 months ago. I am a 45 y/o white male, otherwise perfectly health.

Approximately 1 month prior to 'the incident' I got a high pitched ringing in my left ear along with dizziness to the point where I needed to hold myself up against a wall until I could get to a couch. That episode went away after about 3 minutes. One month later, that same thing happened before dinner and went away as fast. After dinner however, it happened again but this time the ringing didn't stop, I realized I couldn't hear out of my left ear, and I was nauseous for about an hour until an ambulance took me away (I had no idea what was going on).

Since that evening I have 100% hearing loss and very high pitch (~10KHz) tinnitus.

Initially I was put on a course of anti-viral meds and oral steroids. After they had no effect, I received 2 steroid injections through my eardrum, which had no effect either.

The tinnitus is constant now and there is significant residual dizziness, a "foggy" head feeling, and mental fatigue at the end of the work day. I just saw my ENT about the dizziness and all he could tell me was that it may be due to the damaged ear and the residual balance messages it may still be sending my brain. He said he could give me another injection, this time consisting of an ototoxic to kill the last of the inner ear function to see if that helps. Since that means giving up on any hearing restoration ever, I am definitely waiting for that one.

As most of you I'm sure, I have read everything I could find on the Internet. The majority of it is very similar, stating that really the only thing I can do is to try to mask the sound, seek therapy, etc. The most promising information I've seen is out of the University of Texas at Dallas where they are apparently focusing on a tinnitus cure. I think I could handle the loss of hearing, but this high-frequency tinnitus is maddening and very disruptive. I mean, I can't drink anymore, THAT is disruptive!

I look forward to reading your posts and learning from you and sharing any information I come across with the group.

Thanks to the moderators for creating the board and for everyone taking the time to share.

Mike

 

We can learn from you too Mike. I feel bad for you. People here know it’s another side of life were seeing, those who don’t have perfect health. Your experience is dramatic. Probably don't have enough words to express my despair about your story. I'm sincerely sorry for this event in your life.

Thinking back, I had balance issues too, or vertigo what ever that is. I remember hiking on a mountain trail. I was hanging on the rocks like I felt I was going to fall off, crazy, people walking by me. Maybe this was before or after my ears went bad. It was a sign.

I understood it suppose to happen at around 60, the sudden old age hearing loss issue? if that applies, maybe not. I have no idea. Your story is intense, I feel for you. It’s a terrible thing that happened. Do you still have a good ear? Did the doctors give you any reason or cause for this?

(your right about the people that run this site; some good people and a great web site).
BTW, i'm drinking a beer right now, in reply to your can't drink comment, who told you that?

 

I just had tubes put in my ear, had one of them fall out, and am experiencing something similar to you. However, I have an open hole in my ear drum atm, but the tinnitus is significantly worse and my hearing in that ear is diminished. I may have what is called a conductive hearing loss, but I am far more concerned I may have had this happen to me as a result of the tube coming out. I really feel for you man, I cried myself to sleep last night.

 

The worst thing about having Tinnitus is that there is such an underwhelming amount known about it. Isolation is very easy and people who do not have it don't understand or care to understand what it means to hear phantom noise. I have said a lot of negative things in my life about people and their issues or their actions, but Tinnitus is the one thing I would never wish upon anyone, anything, or any entity. I think my hearing has recovered lightly since last night, but again, I still understand that sudden shock you experienced when you suddenly could not hear. Hearing aids as far as I know may still be an option for you, but worse to worst, you can have a cochlear implant put in. My understanding is they are now developing them so they can actually be placed inside the skin and ear canals so you don't have the equivalent of a boom mic on the side of your head.

 

Thanks for your story Michael910411. So you lost 100% hearing on left ear with no acoustic shock or exposure to loud noise at all? Have you considered assessment for Meniere's disease? Since the onset of 100% hearing loss was sudden with no apparent reason, perhaps we can hope for a total recovery as well? I mean, since it came out of the blue so to speak it may also go away in the same manner.

 

Hi everyone, I just logged in again after posting last week; apart from feeling very grateful for the thoughtful replies, I was also saddened to see six new people introducing themselves to the board…I think we'd all like to see no more people need the forum.

Per - Yes, the 100% hearing loss and onset tinnitus was completely without any external trigger - no shock, no loud noise, no physical trauma, etc. My ENT said that he did suspect Meniere's, but I haven't paid too much attention to the label as the prognosis and reality is the same as if it were something else; hearing is gone and is not likely to come back, and (as you all know too well) the tinnitus can be managed, at best, but will not go away. There is the hope that a nerve or something else in my head has been healing since that day but I have to get myself in the frame of mind that it will not come back. That said, I am taking my supplements religiously and giving it every chance.

I'd be interested in hearing your story as well, I'll check back here shortly to check out the new posts.

Thanks,
Mike

 

Packy, thanks for your messages. I agree about the lack of awareness. As a coping tool, I just keep reminding myself of how many much worse maladies there are and how I didn't get any of them. I know it would be better to not have any, but given something terminal or physically disabling, I'll take this. If nothing else, I am saving lots of money on tequila and beer, both of which are now sadly on the banned list.

Since my hearing loss is 100%, a hearing aide unfortunately won't help. I am able to hear perfectly in my right ear; it's just a struggle to hear over the infernal squealing.

I was told by multiple ENTs that they do not do only one cochlear implant; it has nothing to do with scarcity of resources (like a liver) but rather that the difference in sound between an implant and a working ear would be so different that it would make it unworkable. My understanding is that the implant requires at least some healthy nerve cell to 'attach' to in order to get the input to the brain; I don't even know if this exists. Interestingly, I read an article out of Germany of researchers using stem cells to regrow an auditory nerve just enough to make it viable to attach to an implant.

Thanks again for your posts. I'm really sorry you had to endure the tubes in your ears; I hope they were as tiny as possible and that you're done with that treatment.

Mike

 

Hey James - Thank you for your kind reply. I'm at the point of actually accepting that this is now reality and looking for ways to make the best of it. My right ear is still good as new and the 5 ENTs that I visited all told me the same thing, "We don't know what caused it or what to do about it." Having 2 injections not work was a disappointment but now I have an interesting story to tell at parties

Trust me, the alcohol avoidance is *not* simply in compliance with anyone else's suggestion. I tried drinking shortly after this happened and found that it amplifies the tinnitus by at least 100% and results in an instant migraine. I have tried again since but the aggravation of the tinnitus is maddening and makes the drinking just not worth it. How ironic of nature to take one of the few things you could use to mellow out and turn it into an irritant. Well, there is still classical music, but it's not as much fun to serve that with a lime wedge.

See you here again soon,
Mike

 

Its horrible everytime one must be welcomed in here weve all had the phase pf reading the entire internet and imo on many fields huge advancements are being made, its good you didnt get that last injection as both time provides different ways of healing and massive advancements. As you put it 6 new ones just joined meaning 6x more of a need of advancements. Honestly as long as youre in perfect Health, you know have a pretty badass story to tell, you seem pretty cool about it so im sure it can only turn out alright

 

This problem seems to steal the things we love - for me it was music, concerts and guitar/piano playing

Now the tinnitus and hyperacusis have pretty much stolen those pleasures from me :-(

 

I know what you mean Owch, I have a beautiful Yamaha electric violin sitting here that I was looking forward to learning to play but it looks like that is on hold for a while. Should have practiced while I had the chance!

 

Hi Tenna - I guess you're right, getting an injection in the ear and saying "Thank you sir, may I have another" could be considered badass It seems like the research for a partial or total cure has ramped up fairly recently. I have been reading about work at the University of TX and just this morning followed a link from another member of this board to the University of Michigan (copied below in case you haven't seen it). I see that you've been dealing with this for 2 months, looks like we're both very new to this. I hope you're at least finding some relief or distractions from this. The only thing I have found to help is what all of the websites talk about, masking using either white/natural noise or sometimes classical music. Given the high frequency of mine, the "heavy rain shower" sound in my iPhone white noise app does a really good job.

http://www.uofmhealth.org/news/arch...s-discovery-opens-door-possible-new-treatment

 

Thank you for this link!

These developments are very exciting!

 

Hi Tenna - I noticed our start dates were nearly identical. Wondering how you're doing?

 

Welcome, Michael! The bad news is you're here. The good news is you're here!
I'm encouraged by the folks who have shared that their tinnitus has helped them take better care of themselves and re-define their priorities (like making/taking the time to learn to play an instrument!).
Hope you find encouragement here and can pass it on to others as you do.

 

Mike it almost sounds somewhat like menieres with the vertigo, and ringing. Have your doctors ruled that out?

 

Cullen - I just checked in and saw your post, thank you. You are 100% correct. I have ready the indicators for Menieres and that's exactly what I have, although my ENT stopped short of saying it. Sudden inability to stand, extreme nausia, dizziness, "fullness" in the head, loud constant tinnitus, all symptoms align. The frustrating part is that, while it helps to be able to put a name to it, it is just as incurable as everyone else's symptoms in here. Cullen - I wonder if you suffer from Menieres as well?

 

No mike i dont have menieres, but im sorry to hear about your situation. From what I know most people with M are able to manage the disease with diet,and certain drugs. Im sure you have looked into how to treat it so I want go to much into that. Doesn't sound like your doc was very helpful, which they never for tinnittus, and M being as rare as it is , most probably dont know a whole lot about it. There a lot of good info on hear and people who have habituated to their t to t a point where it does not affect them much. @Dr. Nagler who we are lucky to have for support on this forum wrote this.
http://www.ata.org/nagler-letter-to-tinnitus-sufferer . It was very helpful to me and to many others, its gonna take time habituating but you will get there. It takes time and hard work, Good Luck, and if you need any help people on this site are very helpful.

Also i wanted to add, stay positive there are some treatments being worked on for T. Hopefully in the not so distant future there will be some treatment options that will help. @Michael910411

 

While I don't have hearing loss, my tinnitus did also come out of no where as far as I know. I remember just going to the store to pick my wife up some giftes for Valentines day on Feb 13. Then after being home for about an hour or so, I decided to check my e-mail, and while on my computer, suddenly I started to hear this ringing in my head/right ear. It's been with me ever since.

So while I don't have your situation, I do understand how frustrating it is to go from being relatively healthy and then be struck by some type of condition/illness from out of nowhere. Sometimes I don't know what would be worse: having my tinnitus start because I decided to do something foolish like go to a loud concert without hearing protection, or have it start out of nowhere. If it had started because I went to a loud concert, then at least I'd know that there was a reason, though I might drive myself crazy thinking about how careless I was. But it does suck to know that I got this for no real reason that is known currently. It also makes me a little paranoid because it makes me wonder if something else could happen in literally the next second.

Sigh, well, I feel like I've pretty much habituated to my tinnitus as it doesn't affect my life much. So I can at least say that it is possible to do that much.

 

For no apparent reason last evening, the same high-pitched tinnitus present in my left ear started in the right. The left ear suffered 100% hearing loss and I have thus far retained excellent hearing in the right. Apart from the annoyance this is now causing and obstructed hearing, my only concern now is whether this is a precursor to hearing loss in this remaining good ear. I was hoping to wake up with it gone but it is now as loud in both ears. The only positive I can see is that since there is still hearing in the right ear that it might respond to some of the audio-based therapies for tinnitus. Thinking about the purpose for this post...I suppose it's a combination of documenting my personal timeline, sharing the story with others who may be experiencing similar, and of course soliciting any advice from others who may have been down the same path.

 

You need to see an ENT immediately (needless to say). An ENT who specializes in Menieres disease and tinnitus for possible intratympanic steriod injections. Steriod injections will not always cure the condition, but it may "buy you some time".

Dr. Michael D. Seidman is one such possibility. I have not met him myself - but he could be a starting point for an urgent consultation. But of course there are also other specialists out there...

You need to protect your ears with earplugs at all times from now on.

 

Good luck mate. I've not tried drinking since my tinnitus but I've read many people say it makes their tinnitus worse. I don't drink much anymore. Ironically I gave up drinking and smoking, and started exercising to have a healthier life.
Since then (over three years ago) I've been diagnosed with a pre cancerous condition (barretts disease) and now tinnitus.
If I get another diagnosis of anything soon. I'm gonna try being an alcoholic, smoking crack head and see if my luck changes.
Good luck mate and take care of that good ear.

 

I thought I would post my most recent results in case they can benefit others on the board.

After loud, steady, high frequency T started in my right ear, I went the next day to an urgent care doc to get a course of steroids and an anti-viral, as that was the approach taken when it happened on my left side. Miraculously (have to use that word because that's how it felt) after 60mg of prednisone the first day, I woke up with the ringing gone this morning. I won't know for a while whether it "fixed" whatever was happening or is merely suppressing it until the drug is out of my system.

I confirmed with my ENT in Washington DC that was the right plan of action. He also told me that he wanted blood work done because (I will likely mis-state this) there is a protein that can trigger an auto-immune reaction that can attack various bodily functions, including hearing. He told me that insurance might not cover this specific blood test because it is not common or proven, but of course that is the least of my concerns.

I will follow up when I know more.

 

At some point in the future when all of your results have been compiled - and depending on your "budget" and will to experiment - you should consider the option of adult stem cells. Stem cells are excellent at dealing with auto-immune disorders. Chloe Sohl managed to regain pretty much all of her hearing after suffering from auto-immune disease. And she had 100% hearing loss in one ear...

RNL BIO Rescues a College Student from...

 

Attheedgeofscience - THANK YOU for sharing that video. They didn't go into too much detail about the what's and why's but very inspiring. If nothing else it led me to look at a number of additional auto-immune related videos on youtube. The question I keep coming back to is, after multiple visits to multiple ENTs, why does it take a second traumatic event for them to start sharing these next steps?

 

No problem. You can find lots of information about stem cells on this site.

"Sharing" - or exploring...?

If I recall correctly, Chloe Sohl was treated in 2009. If I further recall correctly, the timespan between her first and second incident was 3 years. That means the first incident of hearing loss took place in 2006 (give or take). In 2006, the stem cell treatments we see today were very much in their infancy - and hence not something they would have explored back then. That is why - like most people - Chloe Sohl went along the path of traditional non-experimental medicine. Until she/her family realized it wasn't helping.

I believe the very first stem cell treatments using Mesenchymal stem cells were done in China in 2003 at the following hospital (again "give or take" a bit):

www.sinostemcells.com

 

Just wanted to be sure everyone saw this!

Quiet that ringing in the brain: New drug promises relief from epilepsy and tinnitus with fewer side effects

A new drug may treat epilepsy and prevent tinnitus by selectively
affecting potassium channels in the brain, UConn neurophysiologist Anastasios Tzingounis and colleagues report in the 10 June
Journal of Neuroscience.


Epilepsy and tinnitus are both caused by overly excitable nerve cells. Healthy nerves have a built-in system that slams on the brakes when they get too excited. But in some people this braking system doesn't work, and the nerves run amok, signaling so much that the brain gets overloaded and has a seizure (epilepsy) or hears phantom ringing (tinnitus). About 65 million people worldwide are affected by epilepsy. The numbers on tinnitus are not as clearcut, but the American Tinnutus Association estimates 2
million people have tinnitus so disabling they have troubling functioning in daily life.

The existing drugs to treat epilepsy don't always work and can have serious side effects. One of the more effective, called retigabine, helps open KCNQ potassium channels, the "brakes" that shut down the signaling of overly excited nerves. Unfortunately, retigabine has awful side effects. Because of this, it's usually only given to adults who don't get relief from other epilepsy drugs.

Several years ago, doctors around the world began reporting infants with severe, brain-damaging seizures. Genetic testing showed that the children with this problem had genetic differences in their KCNQ potassium channels. Most existing anti-seizure drugs don't work for these children, and few want to give babies retigabine because of its side affects, which include sleepiness, dizziness, problems with urination and hearing, and an unnerving tendency to turn people's skin and eyes blue.

Tzingounis began working in 2013 with Thanos Tzounopoulos, a tinnitus expert at the University of Pittsburgh, on a new drug candidate. The drug, SF0034, was chemically identical to retigabine, except that it had an extra fluorine atom. A company called SciFluor had developed SF0034, and wanted to know whether the compound had promise against epilepsy and tinnitus. The two researchers thought the drug had the potential to be much better than retigabine.

The most important question to answer was whether SF0034 works on KCNQ potassium channels the same way retigabine does, and if so, was it better or worse that its parent compound? KCNQ potassium channels are found in the initial segment of axons, long nerve fibers that reach out and almost, but don't quite, touch other cells. The gap between the axon and the other cell is called a synapse. When the cell wants to signal to the axon, it floods the synapse with sodium ions to create an electrical potential. When that electrical potential goes on too long, or gets out of hand, the KCNQ potassium channel kicks in. It opens, potassium ions flood out, and the sodium-induced electrical potential shuts down. In some types of epilepsy, the KCNQ potassium channels have trouble opening and shutting down runaway electrical potentials in the nerve synapse. Retigabine helps them open.

There are five different kinds of KCNQ potassium channels in the body, but only two are important in epilepsy and tinnitus: KCNQ2 and KCNQ3. The problem with retigabine is that it acts on other KCNQ potassium channels as well. That's why it has so many unwanted side effects.

Tzingounis and Tzounopoulos first tested SF0034 in neurons, and found that it was more selective than retigabine. It seemed to open only KCNQ2 and KCNQ3 potassium channels, not affecting KCNQ 4 or 5. It was more effective than retigabine at preventing seizures in animals, and it was also less toxic.The results are promising, both for research and medicine. SciFluor now plans to start FDA trials with SF0034 and see if it is safe and effective in people. Treating epilepsy is the primary goal, but tinnitus can be similarly debilitating, and sufferers would be thrilled to have a decent treatment.

Tzingounis is pleased as well. "This [SF0034] gives me another tool, and a better tool, to dissect the function of these channels," Tzingounis says. "And we need to find solutions for kids—and adults—with this problem," he says.

 

Hey @Michael910411 how are you doing? I just read your thread, scary stuff really. Have you got more meniere attacks during year since you last posted? Do you take steroids often?

 

Hi Pkraw - I haven't experienced traditional discrete M attacks, I just have constant dizziness and a head spinning feeling. I feel fortunate because I've read that those attacks can be very severe. I tried steroid injections when this first happened, to try to reduce supposed swelling and possibly reduce symptoms and (at the time) return hearing, but to no avail. I have been considering gentamicin injections to destroy all vestibular function on my left side, but after reading about the wide variety of side effects and varying success I am holding off as long as I can. A specialist I saw in NY suggested skipping the gent injection and going straight to a labrynthectomy. Considering that requires drilling a hole in your skull and performing an irreversible removal of the vestibular mechanism, I'm holding off on that for a while also. I will never forget the last thing he said to me..... "Don't let this ruin your life, the surgery has low risk and a very high success rate". Like everyone else here, I'm holding out hope that with the increase in awareness and known cases, that T and M will get increasing attention from researchers and pharma. The article above is exciting. Thanks for your post!

 

Trobalt works on five different channels while SF works on two channels to lessen the side-effects. Autifony would be your best best as it works one channel that is important the KV3 channels which can repolarize the neurons therefore can aid in the treatment in tinnitus. Just keep an eye on Autifony which will be out sooner.