Coping with Sudden Hearing Loss and Very Loud Tinnitus

[Debbie Steel]

Hi I'm new to this and hoping someone can help.

I've been diagnosed just this week with SSHL, severe hearing loss on right ear around 90db mark. On massive dose of steroids to see if some of hearing will come back but unlikely.

I can cope with the loss in time, it's the tinnitus that is killing me. It's insanely loud, like a crazy washing machine/hairdryer on max/ radio not tuned in but turned up to max volume. I can hear it over everything - even trains, car noise, if I turn the TV or radio on, it competes with the noise rather than take my attention of it. Everything I've read tells you to distract yourself but it's just too loud!!
Can anyone give me any advice?? I know it's a long haul but just need some pointers re coping mechanisms and hope that something this severe can get better.

I'm 39 and no stranger to health problems (have had 4 hip replacements with last 6
Months ago) so I know how to battle issues but am really struggling to stay positive on this one as there's just no respite. Snoozing and reading are my go-to relaxation tips but it's impossible to do either.

Thanks for any help, much appreciated.
Debbie

 

[slipware]

Oh Debbie, that sounds exactly what happened to me in 2012. Complete and sudden hearing loss to the right ear. Mine was caused by a blood clot in the brain stem, MRI showed some damage. Over the last two years or so, my hearing has partly come back, but distorted, I have hearing aids now. It doesn't help the tinnitus but it does help me hear better albeit distorted and tinny. Just hang on in there. Have the MRI to rule out acoustic neuroma which is very rare but needs to be ruled out. I can't say if you tinnitus will go, but if, like mine, it doesn't, then it's not the end of the world, you can adapt. Mine has very loud days, but some quieter days now, which I treasure. Though it is never gone. I live with it, day in day put and try and distract myself. You will get through. I'm sure someone who has medical experience will reply to you.

 

[dan]

hi Debbie, do you have any sleeping issues?

 

[Debbie Steel]

Thanks slipware. it's just nice to know I'm not alone. Can feel like you're stuck inside your own head and I'm not great at talking about health issues, more used to just getting on with it
MRI was clear so that's good news. Think it's just a waiting game I guess
One more quick question - how do you distract yourself on loud days? I'm finding it impossible or is it something that takes time?

 

[Debbie Steel]

Hi dan. Yes can't sleep at all at the moment. I've always been the kind of person that needs total silence to sleep or concentrate. Never been able to cope with constant noise like fan, air conditioner, and this is soooo much louder

 

[1MW]

You say that you have 4 hip replacements... I think this has some relation with SNHL ...
Perphaps this happened due to toxic metals of implants or antibiotics.
Read this http://articles.latimes.com/2014/feb/07/science/la-sci-sn-dr-house-tv-cracks-cobalt-case-20140207
https://encrypted.google.com/#q=cobalt poisoning hip replacement

Also because the problem is fresh try to get intratympanic steroids and HBO


Your therapy must have iv steroids intratympanic steroids antivirals (perhaps antibiotics if bacteria is found) vitamins a/b/c/d/e nac creatine magnesium vasodilators .
Every second you loose to make therapy you loose possibilities to recover go immediately to make
this treatment.
90db hearing loss is a bad prognostic factor for full recovery but perhaps you can make partial
recovery and this will lower your tinnitus dramatically.

Check it before worse things can happen.
Don't believe non specialists also specialists do wrong.

 

[dan]

Sorry to hear that Debbie, its a real pain in the butt, but once you get your sleep back you'll be half way there. Tinnitus may also subside, so don't lose hope.

 

[Debbie Steel]

Thanks 1MW. This is something I keep trying to get medical professionals to consider this, but have been told no one understands the effects etc.
I had 2 metal on metal hips that caused severe metal poisoning and so were removed in 2012 and this June. I have had so many ill effects from the poisoning, won't bore you with them all, but my body is still definitely fighting it. But here in the UK it's just not well-understood and there seems little interest in the whole subject. I'm going to start digging again though, thanks for the reminder.
In terms of the injections, my ENT surgeon was so dismissive, he literally told me he only did them for 'hysterical' patients that insisted. I'm just going to have to insist. He is very much of the opinion that there's nothing that can help, hasn't discussed any other therapies. Will look around for help from other sources.
All of the things that you mentioned I need, would they be injected or from other sources? Is it all in 1 injection or does the surgeon need to mix it up? I'm only asking because my ENT only mentioned steroids and even then only when I pushed him.
I feel like I have to take charge of my own treatment. I don't want to sound bitter, because I'm not, but I always need to push to get the right help. With my hip, they wanted me to leave it in - then when I insisted they take it out, they found the metal had eaten away at bone and muscle!!!!

 

[Debbie Steel]

Thanks Dan - I have found that the longer it is since I slept the worse the tinnitus is getting. I've not slept since Weds now and today it's so much louder. I think the massive dose of oral steroids I'm on isn't helping me to sleep
Are there any magic tips for sleeping? I'm guessing resorting to sleeping pills isn't a good move

 

[dan]

Sleeping pills short term to get on your feet again, is a good move actually.
Not sleeping is much worse.

 

[Debbie Steel]

Thanks, will get some!!

 

[attheedgeofscience]

Hi I'm new to this and hoping someone can help.
I've been diagnosed just this week with SSHL, severe hearing loss on right ear around 90db mark. On massive dose of steroids to see if some of hearing will come back but unlikely.

SSHL is a medical emergency. And is normally taken very seriously by ENTs so your other remarks about having to push for an I.T. solution and/or oral-/IV-steriods seems unusual (given that 90db hearing loss has been diagnosed).

For now, it is a matter of seeing if the hearing returns. If not - and in addition - you may wish to consider clinical trials to the extent that these may be available to you. I have constant focus on the drug pipelines involving tinnitus, but I track all otology therapies available out there (which would include hearing loss reversal therapies). I will message it to you.

For the sake of completeness and for future consideration, I should mention that there are also stem cell treatments which could help depending on the exact etiology of your condition (eg. auto-immune disease). Needless to say, such treatments would be self-funded and very expensive and the outcome unreliable.

Lastly, if your hearing does not return, it is possible to consider an ototoxic I.T. injection which would kill off the remaining hearing (and possibly reduce/eliminate the tinnitus). I have absolutely no experience or opinion on those types of treatments of last resort - so I am simply mentioning it for your info. You would need to do your on research on this if it becomes relevant to consider (later on).

Yes can't sleep at all at the moment.

That would be a side-effect of the steriods (as you probably know).

 

[Debbie Steel]

Thanks attheedgeofscience, so much helpful info. Lots to look into on this, really need to immerse myself in it. I've spent the last few years becoming an expert of all issues related to metal poisoning and hip replacements - time to apply my skills to this new health challenge !
Thanks for your message on clinical trials, my husband has been looking for similar things today so that's very useful.
I'm also starting to think that my ENT surgeon is a bit old school and unsympathetic, so will look for a 2nd opinion I think.
Hopefully the sleeping will also improve once steroids are out of my system.
Thanks again.

 

[1MW]

get sleep in sudden hearing loss sleep improves the situation.
get intratympanic dexamethasone and HBO with 90db hearing loss these medications are must.
Are you have 90db in all frequencies ?
If the loss is only in some frequencies then the changes to recover is far more better.

from bibliography 90db hearing loss hearing returned only with intratympanic steroids and hbo
of course plays a role the time from event and starting therapy the age and the type of hearing loss.

 

[Evian]

Oh dear another thread about tinnitus and metal posioing from multipule metals with titanium included.

A lot more attention needs to be given to what Drs and Dentists put in our bodies

I would urge nobody to go for multipule metals in their mouth. My vanity in not wanting a denture has cost me my sanity. Ruined retirement and mega effect on my husband and kids

 

[slipware]

Sorry, haven't been around for a while. I figured maybe not accessing any info or forums on T would take my mind off it.... Wrong. It's as bad as ever, still getting a few better (though never quiet) days. To distract myself I go shopping Debbie! Nothing really distracts when it's bad I've found.

However, I have made an interesting discovery recently. I have been having lots of headaches, nothing sinister. I've always suffered with them, but I've found that taking two paracetamol (I'm on warfarin so nothing else is really advised), and believe it really quietens my extra loud T! Any doctors around to say if it's safe to just take two regular paracetamol on a regular basis?

 

[undecided]

Paracetamol is considered one of the safest painkillers, as far as t is concerned.
But as with any drug, don't overdo it. I believe that 500mg per day is the sweet spot (say, two 250mg doses).

The thing with paracetamol is that it relieves headaches because it's a light vasoconstrictor. It basically makes the blood vessels smaller so that they don't press hard on tissue and nerves.
Therefore, you might want to look into the fact that your t might be somatic, if you are certain that paracetamol reduces your t.
Have you tried caffeine along the paracetamol? That would enhance the vasoconstricting properties of both substances.

If you have success with paracetamol + caffeine, you might go discuss it with your doc, maybe get an mra or something.

 

[Chung]

Unfortunately, in my case, SSHL was not considered as a medical emergency. I had it in April 2010. I went to urgent care and the doctor told me my ear looked "normal". Then I went to ER and they sent me home with an information sheet about Tinnitus. I saw my GP the next day he told me it's a middle ear infection and the hearing should come back. BUT It DID NOT. It's only three weeks later then I got the treatment I needed but it was too late. I suffered every day since then.
So, we need to educate the medical community that IT IS an emergency and all the GP should treat it immediately!

 

[Jan K]

I'm new here and looking for any help. I've been reading everything but nothing seems to be consistent with what I'm experiencing. Then I saw the metal implant possible connection. I got titanium dental implants a few years ago and have had mild tinnitus since but a month ago I had a bout of loud tinnitus in my left ear that lasted two hours straight. When it finally stopped, I had NO hearing! I went to the ER, had a CT scan and started steroids. About four days into the steroid treatment my tinnitus returned louder than ever but not my hearing. In the past month I've been to an ENT, my primary care doc, an audiologist, a neurologist and had a multitude of tests. They can find nothing wrong with me so now they want me to see a psychiatrist. Holy crap! Am I crazy??? I'm looking for possible explanations (other than I'm nuts) because if I find the why, maybe I can find what to do. I'm having trouble functioning in my life because this constant roaring keeps me from sleeping or concentrating on anything. Did you find out if it was due to the metal? I hope you're feeling better. Thanks

 

[GregCA]

I'm new here and looking for any help. I've been reading everything but nothing seems to be consistent with what I'm experiencing. Then I saw the metal implant possible connection. I got titanium dental implants a few years ago and have had mild tinnitus since but a month ago I had a bout of loud tinnitus in my left ear that lasted two hours straight. When it finally stopped, I had NO hearing! I went to the ER, had a CT scan and started steroids. About four days into the steroid treatment my tinnitus returned louder than ever but not my hearing. In the past month I've been to an ENT, my primary care doc, an audiologist, a neurologist and had a multitude of tests. They can find nothing wrong with me so now they want me to see a psychiatrist. Holy crap! Am I crazy??? I'm looking for possible explanations (other than I'm nuts) because if I find the why, maybe I can find what to do. I'm having trouble functioning in my life because this constant roaring keeps me from sleeping or concentrating on anything. Did you find out if it was due to the metal? I hope you're feeling better. Thanks

While it is possibly due to the metal, it could also be completely unrelated. Your symptoms are consistent with (idiopathic) Sudden Hearing Loss, which affects people "randomly".
For SHL there's a few things that people try: HBOT and steroids. There is a small window to treat, so time is of the essence. If you're lucky, you'll recover your hearing.
You should start a diagnosis process with your doctor: there's many tests to do to try to narrow down the root cause. It can be frustrating and fail to find a root cause.
There is a chance you'll be sent to do an MRI to rule out an acoustic neuroma, since you have losses on one side only.
Good luck.