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

[just1morething]

@billie48

Very sorry to hear about your situation and hope you improve. I know @Sailboardman had SSNHL. Maybe you could contact him? Or call one of the major ear clinics like Silverstein or Shea.

Do any ENTs recommend IT steroid injections, so the steroid gets to the area that needs it in high concentrations?

 

[billie48]

The 50 mg Prednisone, one pill per day, hasn't done anything after 6 days and I am quite dizzy. But I should be taking 70 mg to 80 mg per day based on 1 mg per kg as I weigh 180 lbs or about 75 kg to 80 kg.

Will the doctor up the dosage at my request?

 

[Darren H]

Hello. Really sorry to hear this. I've been through all this.

I'm 25 and suffered SSHL on May 11th. I weigh 85 kg but only had 40 mg of steroids per day for 5 days only, starting on day 7. I saw most improvement 3 days after starting my prescription on day 10. Over the next 3 weeks (day 10-day 30) I had 3 intratympanic injections of Dexamethasone and 10 HBOT sessions.

I cannot say for sure which helped but I did notice slight improvement in this time period and the weeks thereafter. I'm not sure where you're based but I would recommend the injections if possible, based on my experience and experiences I've read in a Facebook group! If you want to DM me feel free, if I can be of any assistance. I still have tinnitus but I recovered normal hearing back to 2000 Hz, and 70 dB drop thereafter. Not chuffed about this but I'm getting by without a hearing aid for now.

I too had the MRI. Its' standard with SSHL. I would not worry about the outcome of it.

An acoustic neuroma is extremely rare and typically is not associated with sudden hearing loss (would be more progressive). The MRI machine was relatively loud yes, but I wore a lot of ear protection and touched it out. My tinnitus reduced to normal 5 mins after. I also had all sorts of bloods taken etc. Like @FGG the only indicator I had was that EBV was present, at a point in time. I didn't get thorough enough test done to tell me if it was present at the time or a long time ago.

For me, the only theory I have on what happened was that indeed the EBV virus attacked me ear due to a suppressed immune system. Since COVID-19 I was WFH in an apartment with a lot of mould in 1 certain area (beside the table behind a curtain) that I didn't address. I think that in combination with some work stress just gave the virus the opportunity to attack. Since then I've moved out of the apartment and have been taking care of myself much more with regard to nutrition, rest, etc.

I wish SSHL never happened to me but 8 months later I'm in a much better place and there are things to look forward to such as FX-322 (hopefully).

Long story short you'll have a couple of rough weeks but I wish you all the best going forward, it does get much easier.

 

[billie48]

I wish SSHL never happened to me but 8 months later I'm in a much better place and there are things to look forward to such as FX-322 (hopefully

Thank you very much for your encouraging post. I guess you are right that there will be rough weeks ahead but I hope mine will improve like yours. But after 6 days of 50mg prednisone my left ear hasn't responded so far. But it is also the constant dizziness and brain fog plus ear feeling oressured and blocked that I need to deal with. May I ask if you suffered from bad vertigo too during the onset? If so how long you got better from dizziness? Thanks.

 

[Samantha R]

@billie48

The pressure in the ear and full / blocked feeling also sounds typical of Meniere's.
A suggestion to see if it helps is to ask your doctor for a diuretic.

In Meniere's, this pressure and blocked feeling is often due to the build up of fluid in the inner ear. A diuretic can assist in draining the fluid and helping with those sensations.

Whilst I don't have Meniere's, I did have a cochlear Hydrops episode and that was exactly how my ear felt until I went on a diuretic. At that point, within 24 hours I had my hearing back, less pressure in my ear and the blocked sensation was gone.

 

[Darren H]

May I ask if you suffered from bad vertigo too during the onset? If so how long you got better from dizziness? Thanks.

I didn't have vertigo at any stage. My ear felt full though, much of the fullness subsided on day 10 when oral steroids had some effect. The rest disappeared over the course of the next few weeks. I assume the fullness in my ear was inflammation.

 

[FGG]

I didn't have vertigo at any stage. My ear felt full though, much of the fullness subsided on day 10 when oral steroids had some effect. The rest disappeared over the course of the next few weeks. I assume the fullness in my ear was inflammation.

The pressure in the ear and full / blocked feeling also sounds typical of Meniere's.
A suggestion to see if it helps is to ask your doctor for a diuretic.

In Meniere's, this pressure and blocked feeling is often due to the build up of fluid in the inner ear. A diuretic can assist in draining the fluid and helping with those sensations.

Whilst I don't have Meniere's, I did have a cochlear Hydrops episode and that was exactly how my ear felt until I went on a diuretic. At that point, within 24 hours I had my hearing back, less pressure in my ear and the blocked sensation was gone.

I had ear fullness for about a month I think after my worst vestibular attack.

I got fullness again after antibiotics destroyed my cochlea and that lasted about 3 months and was even worse in terms of pressure.

Ear fullness isn't pathognomic for Meniere's (but it is common with it).

 

[Ed209]

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 so so sorry that you're being put through this. Nobody deserves this, and especially not you. I feel like I need to reach through the screen and give you a big hug and say everything will be ok.

I really hope you find some solutions, Billie. I'm surprised they didn't do an intratympanic steroid injection along with HBOT.

 

[Samantha R]

I had ear fullness for about a month I think after my worst vestibular attack.

I got fullness again after antibiotics destroyed my cochlea and that lasted about 3 months and was even worse in terms of pressure.

Ear fullness isn't pathognomic for Meniere's (but it is common with it).

Absolutely it's indicative of both Meniere's and SSNHL. I was initially misdiagnosed with SSNHL, I had no vertigo.

Prednisone did nothing and so sourced myself a diuretic and all has been well since.
Just putting it out there as another avenue to pursue as symptoms overlap.
I suffered for a month until I realised I didn't have SSNHL.

 

[billie48]

I'm so so sorry that you're being put through this. Nobody deserves this, and especially not you. I feel like I need to reach through the screen and give you a big hug and say everything will be ok.

I really hope you find some solutions, Billie. I'm surprised they didn't do an intratympanic steroid injection along with HBOT.

Thank you so much for that heart warming gesture of kindness. I need that hug for sure. Much appreciated. I am starting HBOT today for the next 20 days. My ENT said he will give me injection in a week if HBOT can't help. He thinks oral steroid should be sufficient sufficient and injection is considered a salvage procedure only. Perhaps I can ask him to do it sooner. But he thinks too much prednisone can have more risk than benefits. I am now taking 20mg prednisone 3 times per day. He thinks it is the highest dosage already.

 

[billie48]

@billie48

The pressure in the ear and full / blocked feeling also sounds typical of Meniere's.
A suggestion to see if it helps is to ask your doctor for a diuretic.

In Meniere's, this pressure and blocked feeling is often due to the build up of fluid in the inner ear. A diuretic can assist in draining the fluid and helping with those sensations.

Whilst I don't have Meniere's, I did have a cochlear Hydrops episode and that was exactly how my ear felt until I went on a diuretic. At that point, within 24 hours I had my hearing back, less pressure in my ear and the blocked sensation was gone.

Thanks for the advice. Because my hearing loss is so sudden and total on my good ear, they consider it SSNHL. But I can ask the doctor for a diuretic to help the ear fullness too. Thanks.

 

[billie48]

I didn't have vertigo at any stage. My ear felt full though, much of the fullness subsided on day 10 when oral steroids had some effect. The rest disappeared over the course of the next few weeks. I assume the fullness in my ear was inflammation.

It is puzzling why vertigo only happens to some and not all victims of SSNHL. The ENT said the vertigo is caused by the eyes failing to get input from both of my ears and so they are confused how to react on balancing my body. If so why this doesn't happen to all victims of SSNHL?

 

[billie48]

Hi @billie48.

Did they not offer you an intratympanic steroid injection? I'd be happy to discuss with you if you want to PM me?

BW

My ENT suggests the injection after a week of HBOT starting today. He thinks oral steroids should be sufficient as I am taking 50 mg to 60 mg right now. But he will inject it later as a salvage procedure. Perhaps I should rush him on it if you can share your insights on why it should be done fast. So many studies out there and quite confusing. Better to hear what ENTs in the field are finding. So your advice is much appreciated.

 

[billie48]

Just finished the 1st session of HBOT today. Very strange experience indeed. I felt like an astronaut breathing oxygen from a head gear and in a tight capsule. Lol. Whatever it will do for me, I am not sure but at least I tried it.
Have anyone tried this and find it useful?

 

[ajc]

Just finished the 1st session of HBOT today. Very strange experience indeed. I felt like an astronaut breathing oxygen from a head gear and in a tight capsule. Lol. Whatever it will do for me, I am not sure but at least I tried it.
Have anyone tried this and find it useful?

How are you now? Any improvements at all?

 

[billie48]

unfortunately not much for hearing and ears are still blocked and feel pressured. Dizziness is better than first 2 days but perhaps from the effect of taking gravol or betahistamine more frequently. This dizziness is the most difficult part of my symptoms as it really shuts me out from doing most things. Can't even exercise or walk straight too well, except with a walking cane. I have heard this dizziness and the ear fullness/pressure tend to fade over time on its own. Really hope so. If my hearing on the left is gone for good, so be it. I am doing most things required as promptly as possible, except the injection which my ENT wants to do it after a week of HBOT without result. Has anyone got major vertigo from SSNHL and how long the dizziness will stay in general?

 

[DebInAustralia]

Just finished the 1st session of HBOT today. Very strange experience indeed. I felt like an astronaut breathing oxygen from a head gear and in a tight capsule. Lol. Whatever it will do for me, I am not sure but at least I tried it.
Have anyone tried this and find it useful?

@Samantha R

 

[DebInAustralia]

unfortunately not much for hearing and ears are still blocked and feel pressured. Dizziness is better than first 2 days but perhaps from the effect of taking gravol or betahistamine more frequently. This dizziness is the most difficult part of my symptoms as it really shuts me out from doing most things. Can't even exercise or walk straight too well, except with a walking cane. I have heard this dizziness and the ear fullness/pressure tend to fade over time on its own. Really hope so. If my hearing on the left is gone for good, so be it. I am doing most things required as promptly as possible, except the injection which my ENT wants to do it after a week of HBOT without result. Has anyone got major vertigo from SSNHL and how long the dizziness will stay in general?

Is your ENT open to Moduretic?

 

[Greg Sacramento]

victims of SSNHL. The ENT said the vertigo is caused by the eyes failing to get input from both of my ears and so they are confused how to react on balancing my body.

This is true for many.

Not sure, @billie48, but I would consider this. Give things a couple of months.

Dizziness & Balance Problems Related to Vision | Neuro-Optometric Rehabilitation Association

Vestibular Neuritis: Symptoms, Causes, Diagnosis & Treatment (clevelandclinic.org)

Vestibular Balance Disorder Symptoms, Signs & Causes (medicinenet.com)

 

[SillyMama]

Hi, @billie48
I am so sorry you're going through this!
I read through the replies from other members and it sounds like they have great advice.
This may not address your circumstances at all, but I felt compelled to add that when I first got tinnitus, I *thought* I had vertigo because I had shaky vision that screwed up my balance, and that's the only word I had in my vocabulary to describe it, so I *called* it vertigo. I assumed I had BPPV, but my ENT said no. And the maneuver didn't help.
I don't know how it's related, but somehow I have been having somatic tinnitus that also makes my vision shake when it's really bad. It makes it seriously difficult to walk or drive.
I hope your episodes of dizzyness don't last, and that you get some answers soon.
Warm regards,
Donna (aka SillyMama)

 

[Lane]

Dizziness is better than first 2 days but perhaps from the effect of taking gravol or betahistamine more frequently.

Hi @billie48 -- I'm sorry to hear about your sudden onset of hearing loss and vertigo. -- I thought I'd share a few thoughts, drawing on my own 25+ years struggle with chronic vertigo/dizziness. (I want to emphasize I'm not in any way whatsoever countering any of the excellent thoughts and ideas others have posted.) -- Since OI is a common symptom of ME/CFS (which I am diagnosed with), for the longest time I never really gave serious consideration to whether it could be a symptom of Meniere's (which I now think it could be).

At this time however, I believe I have some form of orthostatic intolerance (OI) causing my vertigo. -- Common Syndromes of Orthostatic Intolerance. Depending on your own health history, perhaps it will be something for you to consider. -- Notably, OI can be caused by a viral infection, though there are many other causes as well. In my case, I believe it's caused by Autonomic Nervous System (ANS) dysfunction, with accompanying vagus nerve (VN) dysfunction. The reason I believe this is because I experienced a serious dislocation of my uppermost cervical vertebra (Atlas) as a teenager, resulting in the cranial nerves traversing through the Atlas becoming impinged.

As a result, I have many symptoms of vagus nerve dysregulation, which I believe greatly contributes to my OI--and associated vertigo and dizziness. However, I've learned that similar symptoms of dizziness and vertigo can result from things going on just about anywhere in the body, wherever the vagus nerve travels through. -- Vagus (Latin) means wandering, and is the longest cranial nerve in the body. It branches from the brainstem area to virtually every part of the upper torso of the body, ending in the colon. There's even an "auricular branch of the vagus nerve", meaning it's a vital part of our whole auricular system, with nerve endings in both ears.

Which means that if a person has some kind of liver dysfunction, or gallstones, or any number of other things, it could very well be sending some kind of dissonant nerve signal--via the vagus nerve--back to the brain, causing some kind of "irritation" or disharmony along the entire length of the vagus nerve, including the ears. I've long believed that a certain percentage of people with idiopathic tinnitus (and depression, and/or anxiety, etc.) have this kind of dynamic going on. I've come to believe many people with tinnitus and accompanying depression, anxiety, OCD, hypersensitivity, etc., are likely experiencing symptoms that have the same cause. -- This has major implications for our state of mind, as the vagus nerve is the primary orchestrator of the parasympathetic nervous system, meaning our ability to calm ourselves, and restore a sense of equanimity within the body and psyche.

Perhaps a final thought. -- I believe that whenever we have some kind of discomfort or discordance anywhere in our body, it's always helpful to send as much extra nerve energy to that area as possible. One of the best ways to do that is with reflexology. There are others, but reflexology is the easiest and quickest way to start (and sometimes the most effective). Reflexologists essentially believe there's nerve ending in the hands and feet that correspond to every part of the body. And by massaging various areas of the feet and hands, you can send nerve energy to specific parts of the body.

Regarding any kind of ear discomfort, the area on the hands that corresponds to the ears is between the little finger and ring finger. If you massage the inside of the little finger and the immediately adjacent area of the ring finger (and the area on the hand where they meet), I'm guessing most people with tinnitus will likely find these areas quite tender. If a person gently works on them over a few days, that tenderness will start to work itself out. Some people actually notice an almost immediate difference in their tinnitus and/or the stress levels in their ears. -- In my initial traumatic stages of tinnitus, those areas were actually painful to the touch. Gently massaging them seemed to really help me keep calm during those desperate times.

All the Best!

 

[billie48]

Thank you Lane for sharing so much detail info. You must have lots of patience to face and live with chronic dizziness/vertigo. I have it for a week and can really empathize with what you are dealing. You are an iron lady and my new guiding light to help me through my own struggle with this symptom. I hope my eyes will learn to balance my body fast with only 1 ear. Thanks again. God bless.

 

[billie48]

Is your ENT open to Moduretic?

I will check with him to get something to help with the ear fullness. It is like cotton balls are inside both ears. Lol.

 

[Jack Straw]

@billie48 How have you been? Did you improve at all?

 

[Zaimon]

Hi there. I experienced the same like you, twice actually. The vertigo was so bad I had to stay in bed for 14 days. Could not event walk to the toilet alone. It's an inflammation of your inner ear balance nerve. Get some steroids ASAP, they will help. And don't worry too much. It will completely go away after some time.

It does not neccessarily have to be Meniere's. Let an ENT check your eyes for a Nystagmus. The diagonsis for me was called "Neuropathia Vestibularis" if you want to Google it.

Get well soon!!

 

[FGG]

Hi there. I experienced the same like you, twice actually. The vertigo was so bad I had to stay in bed for 14 days. Could not event walk to the toilet alone. It's an inflammation of your inner ear balance nerve. Get some steroids ASAP, they will help. And don't worry too much. It will completely go away after some time.

It does not neccessarily have to be Meniere's. Let an ENT check your eyes for a Nystagmus. The diagonsis for me was called "Neuropathia Vestibularis" if you want to Google it.

Get well soon!!

That's another term for "vestibular neuritis", no? Hearing loss does not usually accompany that so I'm not sure it applies here.

 

[Lane]

It's an inflammation of your inner ear balance nerve.

@Zaimon -- I had similar thoughts. I also think it could be why HBOT has helped @billie48 somewhat, as it's able to reduce inflammation. DMSO can also quickly and significantly reduce inflammation, and it's been helpful for me in controlling some of my bouts of vertigo, just by rubbing in on my neck area. The following thread of mine gives a good amount of information on DMSO, and perhaps some clues on whether it might help for certain cases of vertigo.

DMSO & Magnesium Oil for Tonic Tensor Tympani Syndrome (TTTS)

 

[billie48]

@billie48 How have you been? Did you improve at all?

Thank you Jack for your concern. It is a slow process for me so far. The vertigo when every head, body or eye movement was spinning like crazy with severe vomiting has gone but I am still quite in dizziness, wobbling around when I walk. So I need a walking stick to help the balance. Looks like I may miss the steelhead fishing season. Lol. The hearing on the left ear hasn't improved at all. Not sure if it is completely dead. If it is gone to retirement, I will just have to learn to move on with 1 ear like many people do. But having my balance back is essential for moving around to do things. Hope it will return to normal soon. Thanks again.

 

[billie48]

For those of you who are spiritually inclined, I did have a strange moment. After suffering from continuous dizziness and ears with fullness, with a loud roaring tinnitus from the deaf left ear and a high pitched ringing in the right ear which hears with a robotic and metallic quality, and with the brain totally fogged up, I made a fervent prayer to Heavenly Father for intervention to free me of these strange and challenging sensations.

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.

 

[billie48]

Just a short update: my balance is slowly improving. I even drove home today from the HBOT hospital after my wife drove me there. That is my way of positively taking some control of my life back from this latest ordeal. Another development is not conventional medicine.

I found out a friend in my family social circle had SSNHL too about 15 years ago. After 30 days of standard western treatment of Prednisone, her ear still went deaf and her ENT declared her hearing loss must be permanent. Being in Vancouver she just tried her luck with Chinese acupuncture which didn't help. But then she tried an old herbal doctor and was given 3 days of herbal prescription. She said her hearing started coming back after the first dose. After 3 doses she went back to test her hearing from her ENT who had declared her deafness permanent. He was surprised her hearing was back by 70%. This is actually the same ENT I am seeing too. So I asked my friend about her old herbal doctor. Unfortunately she said he passed away already and she didn't keep her herbal prescription sheet. Gosh! So I have just searched out a Chinese herbalist and will give this form of treatment a try. Not sure if it is going to help but after 10 days of no hearing improvements at all with all standard treatments including 4 sessions of HBOT, I will try anything else under the sun. Lol.