I Developed SSHL and Severe Tinnitus on 4/3/2016

[Mettafort]

Hey Dom-

I understand to some degree, though I havent had these challenges for as long as yourself for which I respect deeply. I have found my T volume has actually increased since this time last week. Almost as if its moving inside my head too, which is new. Requires a different coping approach each day; keeps me on my toes

Am I correct in thinking your H, although still there, has reduced a little while the T has been more constant? I am always looking for the little shinning light. If the H is a little less, that is an improvement. I am really glad you can work and concentrate too; that says to me you are doing something right with the way your mind is responding to this in those times. Something you do, something you say to yourself in your mind, that gives you that extra strength to be present for your patients....how do you do the same so you can be present for yourself?

Whats your bedtime/nighttime process like? I am curious actually. I have been doing all sorts with varying degrees of success. Dont have enough data yet though to know for sure one approach has a higher efficacy than another. Meditation, gratitude and acceptance practices have without a doubt though, been working the best.

mf

 

[Dominic1955]

Hi @Mettafort, my T when it first appeared is about the same volume has now. I did have a few occurrences where my hearing improved (only my low frequency improve never my high frequency)
When it happens my T is more manageable. Since Easter my hearing loss has remained severe and my T is again unmanageable, I am using hearing aid with masker but it does not mask my T. My hypercussis is better then when it started 13 months ago, but certain sounds still are uncomfortable. I still feel unsteady but very rarely I get vertigo. When I go to sleep I use a fan and sound machine with crickets I also take 1/4 mg of Xanax, last night I went to bed at 1030pm and woke up at 230am, once I wake up I can't fall asleep again.
I have seen patients in office with similar illnesses and I know 3 who had sshl and severe hearing loss who have adopted and are doing well, I also have 3 patients who had acoustic neuroma that had surgery with subsequent profound hearing loss and are also doing well.
I suspect I still have an active process in my cochlear apparatus that is still active and causing my symptoms. I did see otoneurologist but they are not helpful unless you have a tumor. I tried
All kind of natural treatment also tried tinnitus retraining therapy with no help. I also tried hypnosis and Acupunture and all kind of medications
I am taking a diuretic now since it may be helpful in meniere disease, it's not helping.
I hope you are feeling better!
Keep me posted
Dom

 

[Mettafort]

Hey @Dominic1955,

I read about the diuretic for Menieres (actually I was told about it this past Wed at Northwestern). I am normally on a ketogenic diet that helps with inflammation, sodium and water retention. Have you looked into that diet? I am still on steroids so my doctor wanted me to do a "normal diet", full of carbs and sugar. I definitely feel less on-my-game due to the food I am eating.

I appreciate your sleeping pattern is up and down - waking at 2:30 and then not being able to get back to sleep is a problem. You'll get little deep sleep. I slept well lastnight. I am on 5mg of valium, but I also took a melatonin, and I have a magnesium lotion I use to help too. I was actually falling asleep while watching TV with my wife, so I just went to bed. I did wake up according to my Apple Watch, but I dont recall. Often thats to go potty. But I feel reasonably refreshed today. I keep trying to optimize for sleep, since that has a massive effect on mood.

Nice to hear from you Dom,

mf

 

[Dominic1955]

One more thing, I am thinking that people with low frequency hearing loss have more difficulties habituating then people with high frequency loss,
Did u get a copy of your audiogram

 

[Mettafort]

Dom,

I donhave them now, but hard copies. When I get back from soccer this morning I will send over. I had minor improvement in lower frequencies, but nada on the the higher frequencies.

 

[Dominic1955]

That's a good sign if your low frequency improve I think you will feel much better and H will also improve
Dom

 

[Dominic1955]

On June 2 it will be 14 months that I unfortunately acquired this infernal illness!
It's clear now that I suffer from Ménière's disease.
I experienced my first drop attack about 4 weeks ago, sudden vertigo that made me drop to the floor accompanied by uncontrollable vomiting, profound sweating, loud tinnitus and aural fullness and hearing loss. Lasted 4 hours,
I did see a 2nd neurotologist who diagnosed me with Ménière's and suggested intratympanic gentamicin injection to destroy my vestibular system in my left ear. This could increase my deafness but it should eliminate my vertigo, but unsure what would happen to my tinnitus?
Any suggestions?
Dom

 

[J1820]

Hello Dominic,

I've been reading your thread and am in the same situation. I've had tinnitus in my right ear since 04/15/2012 from an acoustic trauma, and then a cold caused SSHL on 01/29/2016. My tinnitus is probably an 8/10, my H is horrific and I'm a nervous wreck. I contemplated suicide for much of 2016 after it occurred. I'm still a nervous wreck now. I don't play in my band anymore, I don't DJ, I'm always worried about the next spike. I'm only 20, and I feel like I've really been screwed out of the life I wanted to live. I'm working on habituating to my T as I was from the first onset, but it's a rough journey. I've turned to escapism because everyday life is just so dull, with the incessant, high pitched screeching in my right ear. I'm at university, but I feel like "The Walking Dead", I feel like a shell of my former self, a zombie. I had a bad bout of derealization when the SSHL first occurred, but that's mostly cleared up now. I guess it just feels like I've been robbed(?) of the things that brought me joy. Masking doesn't work because this damned ringing is loud, my ear is sensitive to the slightest of noises and I always feel like I'm just around the corner of a panic attack.

Last weekend I left a friends get together with some bullshit excuse that my sisters car needed a jump because the music was too loud and it was setting off my T. I got home and broke out into cold sweats, my legs turned to jelly and I was short of breath. I psyche myself out with this loss. I have a great job, great friends and family but I am just so tired all the time, just so tired... I wouldn't mind if I got flattened by a semi-trailer on the way to work most days

I've never been a very optimistic person, and this T/H/hearing loss has sent me into a spiral. I'm not suicidal right now, but I really don't know how long I can go on with this. I'm in the prime of my life, but I cry myself to sleep because of the pain. The world is just so loud, I don't feel like I fit in...

Sorry for hijacking your thread, but I just need to get this off my chest. I hope things have improved for you.


J

 

[GregCA]

@J1820 - what have you tried so far to help with your condition?

 

[J1820]

@J1820 - what have you tried so far to help with your condition?

@GregCA

I'm too far out from the initial damage to do anything now, but I had an MRI done to rule out a tumor. I was put on Predisone within three days of the loss and had a series of 4 intratympanic injections, with no real improvement. I've been to my ENT dozens of times, and an otoneurologist twice. I wear a hearing aid, but at a 70dB loss in my right ear, I really only get slight masking instead of word comprehension. Most days I listen to soft music in an earbud to get some reprieve, but it's always there.

I was 100% habituated from the acoustic trauma in 2012, but this SSHL has set me back so far. I really don't know what else to do. I took magnesium and Ginko, which helped slightly (I'll start back up on those), but I'm lost as for what else there is to do. I classify my life as pre-SSHL/post-SSHL now, it's affected me that greatly. I just miss playing in my band, not worrying about spiking my T. I miss not having to weasel out of situations that could get loud, like going to the movies with friends or a concert. I'm tired of asking my friends to turn down music in the car that isn't even loud because it could possibly spike my T. I'm really at my wits end. I currently take .25 mg of Klonopin a day for anxiety/slight reduction in ringing, but that's it.

Any suggestions would be helpful. I just can't shake this funk that's overcome me, even over a year later.

 

[GregCA]

@J1820 - I'm sorry about your condition. I am sympathetic, but that in itself is not helpful to you.
Have you tried different kinds of hearing aids? (some with built-in maskers)
There are also some clinical trials going on you may be interested in.

Are both your ears bad or do you still have a reasonably good ear?

Have you done some imaging (like CT) of your middle ear to see if there was any structural problem? Some H cases can be due to middle ear issues - maybe something to explore.

Hang in there!

 

[J1820]

@GregCA

It's fine, I'm not looking for sympathy. I just long for those care free days when my life didn't revolve around my right ear, even when I had T. I was legitimately happy then. My left ear is perfect, which is a blessing. I haven't had any CT scans done, but I may run it by my ENT during my next appointment in a few weeks. I know there's people is much worse conditions than me, hell, I've been to many third world countries to do missionary work, but I still bitch and moan about my ear regardless. Like I said, I've never been much of an optimist, so putting this disease in perspective isn't easy for me. I'll just keep chugging along like I always do, but god, I would give anything to have my hearing back. Thank you for your kind words, it's nice just to talk to someone about this. "Kindred souls" and all that

 

[Dominic1955]

@J1820 I feel your pain! I finally realized that my sshl was caused by Ménière's disease. Now I have not only loud tinnitus, hearing loss and aural fullness but also vertigo. I was seen by several otoneurologist and was offered intratympanic gentamicin to 'kill' my vestibular system so I don't get the vertigo but my hearing loss can get more severe. Unknown what would happen to my tinnitus. Everyday is the same, wake up with loud intrusive T aural fullness, struggle at work, go home at at 830 pm take a sleeping pill to wake up at 4 or 5 am and start over, lucky I only had 4 episodes of vertigo. The last episode was a drop attack, occurred suddenly lasted 4 hrs vomiting was terrible. I have occasional episodes were my hearing improves for a few days and my T softens and I am suddenly hopeful that I am better but it's short lived, the cycle starts over again!
Good luck to you keep me posted
Dominic

 

[GregCA]

My left ear is perfect, which is a blessing.

Just like me: my left is also "perfect", which helps a lot, and at the same time exacerbates the asymmetry.

 

[Aaron123]

@Dominic1955 In case you haven't seen it, there is good information on Meniere's at http://www.dizziness-and-balance.com/disorders/menieres/menieres.html

They include a flow chart for how they treat Meniere's. Gentamiocin is a last resort.

 

[J1820]

@GregCA Yes, the asymmetry drives me up the wall. I miss the sensation of stereo hearing, life felt much more full, 3D-like with stereo hearing. Today was a better T-day than days past, I got on my vitamin regimen again, so that was a nice mental break. Work and summer courses at Uni are keeping me busy as well. If I don't have something to do I slip right back into that dark place that I was right after the loss, not that I've really ever left it.

J

 

[J1820]

@Dominic1955 I'll definitely keep you posted about my recovery (I hope that's what this is). One of my great-uncles has Ménière's, but all of my doctors say that's not what I have. I've considered getting the ototoxic injection just to kill this damn H, but everyone tells me not to do it in case there's some magical advance in science which can reverse hearing loss. Holding out for some kind of stem cell-miracle treatment, but at this point I just want to habituate and move on with my life. Also trying to taper off of my benzos, we'll see how that goes. At this point I'm content with the idea of being numb for the rest of my life, since I can't really enjoy my musical passions anymore

J

 

[GregCA]

I've considered getting the ototoxic injection just to kill this damn H

Note: the gentamicin injections are meant to deal with vertigo symptoms, not hyperacusis.

 

[J1820]

Note: the gentamicin injections are meant to deal with vertigo symptoms, not hyperacusis.

If the hearing is gone, doesn't that effectively deal with the H as well? I can deal with the tinnitus, but the sensitivity to everyday noises is what bothers me the most.

 

[GregCA]

If the hearing is gone, doesn't that effectively deal with the H as well?

I've never read that it was an effective way of getting rid of H. What makes you think it does?

 

[J1820]

@GregCA I really only have sensitivity in my right ear (the damaged one), so I guess it follows (to me at least) that killing the hearing kills the sensitivity. At this point I don't know if I actually have H or if it's just an unconcious reaction to noise that I've developed. I used to wear over-ear Ear Defenders when the SSHL first occurred because everyday noise did physically hurt, but now I think I'm just uncomfortable with the distorted hearing I have, rather than actual pain. I don't know, and it bugs me. I still instinctively plug my bad ear when a loud Harley passes me when I'm walking, but I'm too scared to try not plugging and potentially cause more damage.

 

[GregCA]

I really only have sensitivity in my right ear (the damaged one), so I guess it follows (to me at least) that killing the hearing kills the sensitivity.

I wouldn't be so sure. It's a dangerous bet to say the least.
Remember that many people also thought that T would disappear if they severed the auditory nerve. It kind of made sense too, but they were wrong.

 

[J1820]

@GregCA I'll talk it over with my ENT if the H doesn't improve with time. Today was a pretty good T day, even without benzos. Little improvements here and there make a big difference. Hope everything is well with you.

 

[SilverSpiral]

@J1820 sorry to hear about your condition. I also had acoustic trauma incident, and later SSNHL, the SSNHL was only in the ear most effected by the acoustic trauma, and in a much shorter time range than yours. I discussed with my ENT, if he thought acoustic trauma could cause SSNHL, and he thought so, he also thought acoustic trauma could make the inner ear more vulnerable to further noise damage, and even ototoxic reactions to drugs. Quite a bind it can be.

You mentioned your hearing is distorted, as is mine, though my condition is not as severe as yours, I can not enjoy music.

Just thought I"d let you know some have similar experience, I had not come across someone else who had acoustic trauma and SSNHL consecutively, mine was in a closer together timeframe than yours though.

I also struggle with hearing protection. Muffs seem to be the best, earplugs cause a thump when you walk, but I do tend to use them out of the social anxiety of walking around in peltor x5as.

 

[GregCA]

I'll talk it over with my ENT if the H doesn't improve with time. Today was a pretty good T day, even without benzos. Little improvements here and there make a big difference.

Yes! Glad to see you're doing better today. Good luck!

 

[J1820]

@SilverSpiral I abused my ears even after the original acoustic trauma. I think the main factor was extended use of antibiotics which compromised my immune system, which allowed the cold I had to attack my inner ear. Hindsight is always 20/20 I suppose. I wish I could shake my past-self and tell him to take care of his ears.

 

[J1820]

@GregCA Thanks for the encouragement. My T has been on a fairly steady decline this week, down from about a 7 to a 5. Had an extremely stressful situation over the weekend that caused a spike (mental, not from acoustic trauma) but overall I'm doing better

 

[Dominic1955]

It's now 15 months since my sudden unilateral hearing loss, tinnitus remains loud but at times I can ignore it. Hypercusis has not been a problem for 1 month, hearing loss slightly improved. Hearing aid helping . Last episode of vertigo on 5/3/17
I was diagnosed with Ménière's disease
I would say so far there has been an improvement since last year. Hope it continues.
Good luck to all!

 

[Dominic1955]

It's now 16 months sine my sshl and tinnitus.
Since 5/3 2017 no vertigo!
Had 6 weeks of improvement but over last 7 days my hearing dropped again and loud tinnitus and fullness reoccurred. I have been diagnosed with Ménière's disease in 5/17
I have noticed no change in symptoms related to anything I do or eat. So I have started to eat and drink what I want!
Good luck to all

 

[Dominic1955]

Hello, update on my tinnitus.
Since 4/16 I still have severe intrusive tinnitus.
It's 17 months now and back in 5/17 I was diagnosed with Ménière's disease. That would explain my fluctuating hearing loss. The illness has really disrupted my life, I am vert slowly adapting to the constant noise but it's difficult.
I also experience intermittent vertigo.