My Turn for Your Support — Woke Up with Sudden Hearing Loss and Severe Vertigo

[dingaling]

Hello billie48

In my experience (in the UK), Meniere's doesn't usually cause total SSNHL. And the hearing usually fluctuates. Without knowing the specifics of your case, there might be a possibility of acute vestibular failure which usually resolves after around 12 weeks. I don't know the Canadian health system but here in the UK, after a course of Prednisolone, an intratympanic steroid injection is usually given with a second injection the following week. I see that you have tried HBOT - be careful, because this can cause a raft of middle ear problems including permanent Eustachian tube dysfunction (which isn't nice!). And please don't get your hopes up for a cure; usually if no treatment works within 2 weeks, the prognosis is not good. The only "treatment" is a BAHA or CROS aid (Google them)

 

[billie48]

Thanks. So far the HBOT has been smooth with the staff very meticulously guarding and reminding us to balance the changing pressures. The chamber housed 7 patients for various ailments, not only for hearing loss people. We look funny with a head gear like an astronaut. But one benefit I now realize is my new roaring tinnitus from the deaf left ear usually went silent in the chamber. Strange. It would come back in the evening though. I notice both the old high pitched tinnitus and this new roaring humming tinnitus are now reactive in nature, and the right ear that can hear is having a brittle, robotic or metallic quality. This was the condition like when I had hyperacusis years ago when tinnitus first attacked me but not so extremely sensitive as that time when I basically had to wear ear protection all the time.

One major improvement this time around is that my mental approach towards the new ordeal is much more improved. I manage to avoid extreme relentless anxiety and panic attacks this time.

The brain seems to learn to trust that I need more time to heal and that being more positive will help. It has already learned the need to surrender to life's unpredictable events and willing to accept, adjust, and adapt to the new normal, even with the left ear gone for good.

If the reality is such, I just have to move on with life with one ear left like many aged people and try to find joys still from life's many other positives such as family, friends, love, care, affection, discovery, hobbies, travels, compassionate services to humanity (like you all are so heroically and unselfishly offering here).

Thank you all for your good words here.

 

[dingaling]

Keep up the good work!

If I may add, however, SSNHL is unusual and I've mainly seen it in young(er) people. It's not an "old people's thing" and can happen to anyone at any time

 

[Pulsing Ear]

My ear problems are minor in comparison. I'm scared that they might someday evolve into what you have. Everything seems to get worse as you age. I'm glad you posted your experience because it could help a lot of other people.

 

[Samantha R]

Thanks. So far the HBOT has been smooth with the staff very meticulously guarding and reminding us to balance the changing pressures. The chamber housed 7 patients for various ailments, not only for hearing loss people. We look funny with a head gear like an astronaut. But one benefit I now realize is my new roaring tinnitus from the deaf left ear usually went silent in the chamber. Strange. It would come back in the evening though. I notice both the old high pitched tinnitus and this new roaring humming tinnitus are now reactive in nature, and the right ear that can hear is having a brittle, robotic or metallic quality. This was the condition like when I had hyperacusis years ago when tinnitus first attacked me but not so extremely sensitive as that time when I basically had to wear ear protection all the time.

One major improvement this time around is that my mental approach towards the new ordeal is much more improved. I manage to avoid extreme relentless anxiety and panic attacks this time.

The brain seems to learn to trust that I need more time to heal and that being more positive will help. It has already learned the need to surrender to life's unpredictable events and willing to accept, adjust, and adapt to the new normal, even with the left ear gone for good.

If the reality is such, I just have to move on with life with one ear left like many aged people and try to find joys still from life's many other positives such as family, friends, love, care, affection, discovery, hobbies, travels, compassionate services to humanity (like you all are so heroically and unselfishly offering here).

Thank you all for your good words here.

Hi Billie,

Are you completely deaf in the left ear?

Don't give up hope yet, but your attitude is just great, I guess we learn a lot from our first experience with tinnitus, and we are in better shape if we are hit with a setback in the future.

Do you still have the pressure and fullness in your ear?

I've also done HBOT and although it didn't help me as SSNHL was not my problem, I quite enjoyed the treatment.

Sam

 

[billie48]

Yes Sam, the left ear hasn't responded much and the ear fullness plus loud roaring and high pitch tinnitus are both playing their free duet to me daily. So I have a tenor and a bass competing for my attention. Lol. The ear fullness amplifies the low roaring and humming tinnitus of the deaf ear without ability to mask that ear.

Now I truly understand what Zoe Cartwright had to deal with, the lady who made a short tinnitus film on YouTube trying to tell us her ordeal with unmaskable tinnitus 7/24 for 10 years at the time of making the film. She became completely deaf at young 15 with loud unmaskable tinnitus. Yet she still managed to move on with life and even made it to university. She is definitely a guiding light for other tinnitus sufferers. I mentioned her in my success story.

 

[Ava Lugo]

Then I went to sleep and woke up in the morning like a new person. No more dizziness, no blocked pressured ears, no tinnitus, no brain fog, no more strange sensations and I was moving around without having to lean on things. Even the deaf ear felt like it had some faint hearing.

I was overjoyed. I Thank God for giving me a temporary relief as if to let me know I must endure patiently to let the body and the treatments to work and heal me in due time. I know I must be patient and pay the due of a SSNHL victim, to experience it all so that someday I will be able to share my experiences to those unfortunate new members who also have this horrible experience of sudden deafness. That is a positive I can see in this new ordeal I am going through.

Thank you all for your kindness in offering advice and helpful info to me. God bless you all.

Wow. How long did this moment last?

 

[billie48]

For a few hours that morning. But it has given me a good sign. I have since have had some repeats to know that given time things will improve. I am going to be positive and ready to accept and adapt to the new normal if this condition stays. The big thing is the vertigo is gone despite still having dizziness in general which is a lot more livable than vertigo attack with the world spinning around you and severe vomiting. I count my blessings. This could have been a stroke as both my father and my eldest brother died as stroke victims.

 

[billie48]

It has been a while so I post an update on my battle with SSHL or SSNHL. To recap what happened, I repost below a reply I made to another member who is kind enough to PM with me on my condition:

I am doing fine, in a mental sense, although the symptoms of SSHL are slow in improvement. Let me recap what happened and the journey so far below:

On December 10, 2020, I was hit with a sudden sensorineural hearing loss in my left ear. Besides profound hearing loss, the ear also developed a new loud, rumbling, roaring humming tinnitus and the hyperacusis is back in full force to make the ringing super loud and reactive. So now I have a bass in my left ear and a soprano in my right. My two ears now feel fullness and pressured and plugged up all the time causing balancing issue when I walk. But I have been maintaining a positive attitude that, despite my left ear may go deaf, I will live life normal again, if not months but in a year or two.

I have done all that can be done about treatment, including oral Prednisone, injection, and 20 sessions of hyperbaric oxygen chamber. These are all pretty standard treatment protocols and I did them ASAP without much delay. If these don't fix the ear problem, then I will accept the reality and will adjust and adapt to the new normal of using one ear. I won't let the tinnitus or SSHL tyrants dominate my life. In fact I already went fishing for Winter Steelhead three times even with wobbling steps. LOL. The last time it was a solo trip driving for an hour to the fishing ground and I particularly chose to trek the rapids section with raging and roaring currents and unstable rocky shore. I am not yielding anything to those ear-related tyrants trying to stop me. So like the first time around, I will take on these tinnitus and SSHL tyrants and won't back off to reclaim my life. So on the mental side, I am not yielding and hopefully will win the battle to a more normal life. I also apply all the strategies I have learned and listed in my success story. So far I had been able to deal with this new challenge without panic nor depression and sleeplessness like the first time when tinnitus hit me a decade ago. Sometimes, life not being perfect, we will get hit with some curve balls in life that come from no where. I guess we need to learn to let go some imperfections in life and move on.

The next thing to do is to get hearing aids and see what happen. Thank you all for your kind concern. God bless you all for your kindness.

 

[Danny B]

Reading your response to this has been extremely inspiring Billie. I have had ups and downs in my tinnitus and hearing loss path as well, some more shocking than the others, and I'm going to think about these posts and take your attitude whenever I hit a bump in the road of life. I have confidence that the neuroplasticity of the brain plus your excellent coping skills will get you back to a sense of normalcy and comfort, you've got an iron-clad spirit.

I'm also holding out hope for technology continuing to advance more rapidly than it ever has before. I wouldn't be surprised if machine learning and more advancements in brain mapping technology plus these new hearing loss regeneration drugs opens up all kinds of new pathways to restoring hearing sooner than we expect. There was a time when no one would have guessed that we'd all be carrying around miniature computers in our pocket, and then cell phones became a mainstream hit out of nowhere. I think this kind of game-changing technological advancement will happen in the medical field soon, but I know I also have a habit of being an optimist.

Just wanted you to know how inspired I am by you and your strength! I know there's still plenty of great things down the road for you. Take care and know we're all with you! This forum has given me a deep respect and love for everyone refusing to let this condition get the better of us (and everyone with this condition, really.) Much love.

 

[floridian2]

@billie48, this is so inspiring, and useful for the practical details, too. I will call again to the ENT doctor who has basically shrugged and said "let me know if it happens again and we'll take another hearing test" and now, informed with all this, will ask about oxygen treatment, injection, etc. Instead of saying "aren't there any tests and treatments for this?" I can now, thanks to this forum, ask specifically about oxygen, injections, etc.

What a journey you have had! Thank you for sharing this helpful information. Hope you get more good fishing time in soon.

If anyone has any ideas about where the best help is in north Florida for my ENT issues, similar to bille48's, please let me know. Similar but not exactly the same: mine are episodes of extreme vertigo that hit 5 to 10 weeks apart, unpredictably, with 4-6 hours of extreme spinning and violent vomiting (uncontrollable in the ER without IV morphine), increased tinnitus in both ears but decreased hearing in left hear, pitch is off a lot and raspy sounds seem added on to any other sounds, followed by 2-3 days of dizziness of a more normal kind ("normal" meaning, you can't really walk without the wall, but you finally aren't a tumbleweed and not vomiting). This is keeping me out of work so I need to act fast.

Many thanks in advance for ideas and info.

 

[Kriszti]

@billie48, this is so inspiring, and useful for the practical details, too. I will call again to the ENT doctor who has basically shrugged and said "let me know if it happens again and we'll take another hearing test" and now, informed with all this, will ask about oxygen treatment, injection, etc. Instead of saying "aren't there any tests and treatments for this?" I can now, thanks to this forum, ask specifically about oxygen, injections, etc.

What a journey you have had! Thank you for sharing this helpful information. Hope you get more good fishing time in soon.

If anyone has any ideas about where the best help is in north Florida for my ENT issues, similar to bille48's, please let me know. Similar but not exactly the same: mine are episodes of extreme vertigo that hit 5 to 10 weeks apart, unpredictably, with 4-6 hours of extreme spinning and violent vomiting (uncontrollable in the ER without IV morphine), increased tinnitus in both ears but decreased hearing in left hear, pitch is off a lot and raspy sounds seem added on to any other sounds, followed by 2-3 days of dizziness of a more normal kind ("normal" meaning, you can't really walk without the wall, but you finally aren't a tumbleweed and not vomiting). This is keeping me out of work so I need to act fast.

Many thanks in advance for ideas and info.

Has Meniere's been ruled out in your case?

 

[billie48]

Thank you for your kind words @floridian2. My post was for SSHL and the treatments are for SSHL. However I agree that Meniere's may be the culprit in your case because you have many repeated episodes of vertigo/dizziness. We have members here with Meniere's and so perhaps they can help to see if you have enough Meniere's related symptoms. One notable member @glynis can perhaps help @floridian2 about the possibility of Meniere's. Mine is SSHL or sudden sensorineural hearing loss, which my ENT rules out as a result of Meniere's. He said my hearing loss is sudden and profound without prior episodes of Meniere's related vertigo. Usually, hearing loss from Meniere's comes after a patient has Meniere's disease for a while. So it isn't sudden hearing loss in that case as it is one of the problems of Meniere's. SSHL sometimes can't be traced to any specific cause. It is sudden and unpredictable without prior symptoms or warnings. It just hits you overnight and one of the ears goes deaf without any reason. Sigh!

 

[floridian2]

Has Meniere's been ruled out in your case?

No, it has not been ruled in or out! I cannot get the ENT to give me a diagnosis--they just said "these things sometimes happen, call me if it happens again so we can get a hearing test" (which I did, both the second and third times, to no avail, and the next available test is February 17). Very unsatisfactory. But today I'm taking Prednisone: already seeing some improvement even after only a day and a half. Thank you for your good question!

 

[Kriszti]

No, it has not been ruled in or out! I cannot get the ENT to give me a diagnosis--they just said "these things sometimes happen, call me if it happens again so we can get a hearing test" (which I did, both the second and third times, to no avail, and the next available test is February 17). Very unsatisfactory. But today I'm taking Prednisone: already seeing some improvement even after only a day and a half. Thank you for your good question!

Try to get referred to an otoneurologist, they are experts in balance issues.

 

[guenguer]

The challenge right now is daily dizziness, not balancing well but not vomitting, left ear felt like pressured and full with a constant sensation like when yawning with that air/wind sound or sensation. Right ear hears ok but still feeling blocked and my head is like in a fog with minor headache. Strange sensations. Not sure if these are side effects of the 50mg prednisone, or the penicillin, or the antihistamine. I will stay positive that even if I lose the left ear to hearing my balance will be back with a clearer head. Anyone know a good SSNHL support forum to get some advice on how long these sensations may last.

I'm wondering, is SSNHL so rare or unknown in the US? It's basically the everyday job of an ENT here in Germany. Treatment is 3 days of 250mg Prednisone per day. That's just a try though. Hearing can come back or not.

Vertigo could be a vestibular thing or as mentioned Meniere's disease.

 

[guenguer]

If I may add, however, SSNHL is unusual and I've mainly seen it in young(er) people. It's not an "old people's thing" and can happen to anyone at any time

Are you sure? Basically every ENT's waiting room in Germany has a couple of SSNHL cases nearly every day, across all ages.

I know personally 10 people from my family and friends who had it one or several times.

It's definitely not rare.

 

[matthew_bk]

I'm wondering, is SSNHL so rare or unknown in the US? It's basically the everyday job of an ENT here in Germany. Treatment is 3 days of 250mg Prednisone per day. That's just a try though. Hearing can come back or not.

Vertigo could be a vestibular thing or as mentioned Meniere's disease.

250 mg? What I've seen in literature and from my ENT (USA), it's tied roughly to the patient's weight at 1mg:1kg per day. 250 mg seems wild.

 

[Bartoli]

Are you sure? Basically every ENT's waiting room in Germany has a couple of SSNHL cases nearly every day, across all ages.

I know personally 10 people from my family and friends who had it one or several times.

It's definitely not rare.

I don't know anyone that had this apart from the 2 cases I met in the ENT waiting room.