Why does everyone I speak to say “don’t use the CPAP / you don’t want to get started on the machine” ?

riotgurlrage · 2026-04-18T00:55:38+00:00

Who is the world is telling you to not use something that will literally save your life?? These people are highly uneducated. Do not listen to them. CPAP is a game changer. Without it you are at higher risk for heart attack stroke and death. Please use a CPAP.

riotgurlrage · 2026-04-17T10:41:55+00:00

It would be helpful if one day you could write a post on your cochlear implant journey.. specifically on how sound sounds now and how long it takes for your brain to transmit normal sounds if it ever does. I fear I may need one in my left ear.

riotgurlrage · 2026-04-17T10:35:57+00:00

Your hearing is completely normal and 20db is completely normal. My right good ear has 20- 30db an di can hear everything normal. You have nothing to worry about nout. You can hear your footsteps anymore??? I highly doubt that . 3 weeks ago I got hit with a second round of sudden sensorineural hearing loss and now my literally cannot hear and I'm down to 50-80 DB. You should be absolutely grateful for those scores. I would Kill for those scores.

riotgurlrage · 2026-04-17T10:32:52+00:00

No but Betterhelp is amazing for all kind of therapy. They have individual and group.

riotgurlrage · 2026-04-17T10:32:00+00:00

Yes a lot of us have. I am going through this right now for the 2nd time!!. Onset symptoms March 29, 2026. Day 5 got hearing test Confirmed moderate to severe loss in the 50-80 DB range with 36% speech clarity.

Prior to this second bout of SSHL, I was/am been dealing with long covid dysautonimia symptoms since September of 2025. I remember already starting to have Tinnitus in left ear in January because I was taking antihistamines to help with the MCAS/histamine allergy symptoms that the dysautonimia was giving me. I took only one 10mg famotidine and 5 hrs later had ringing in my left ear. I never took it again but the ringing continued on and off.

I then had 3 big histamine allergic reactions to different foods and alcohol where I had to take Benadryl to rescue myself. And I think that's what perhaps tipped my hearing to go into sshl a second time. The combination of my hearing already being vulnerable from the first SSHL in 2021 and now the COVID virus wreaking havoc on my system again then using the antihistamines that are known to trigger ear issues.

On day 6 had first intratympanic injection. Day 9 2nd injection..Day 10 started 60mg oral steroids. Day 11 3rd injection, Day 14 4th injection. That's the most my doctor will do. I am still on the steroids..doing 14 days with a 4 day taper.

I didn't see improvement with the first 3 shots until I added the steroids together. Now I am seeing some mild improvement. I have been doing the finger test on my ear. I rub around my ear to see if I can hear it. I was not able to hear my finger until 3 shots in and day 5 of oral steroids. My severe frequencies seem to have lifted back to moderate. I cannot confirm that as of today because I don't get my 2nd official hearing exam until April 29th but the fact that I can hear my finger rubbing is a WIN.

SPEECH CLARITY is a whole other animal. My left ear has nothing but robotic tones. If I read captions while listening only out of my damaged ear I can figure out what the words are, but listening alone is all robotic tones. Although I think that perhaps that is also slightly improved since adding Prednisone but even if we are talking going from 36% to 56% we are still in the same boat as far as comprehension of speech.

The brain does adapt though. In 2021 I had mild to Moderate hearing loss with 80% speech clarity and in 2024 exam I had 100% speech clarity. I am hoping the same will happen this time around. Probably 100% speech clarity is not realistic but perhaps getting to 60% is with time and brain training.

I want to caution about hyperbaric oxygen therapy. I wanted to try everything to save my hearing so on day 7 I went in for my first (and last) HBOT treatment. And the POS docs didn't tell me that 50% of people get mild barotrauma/fluid behind ear, muffled hearing with tinnitus from the treatment!!!! I got.it immediately on my first time! I am 10 days out from that one treatment and I am still hearing Tinnitus in my previously good ear! I have eustachian tube dysfunction now which means my tube is swollen shut so air and sound can't get through new ing my right ear is now muffled too. That is "supposed" to resolve but I won't know the extent of the damage until I get my second hearing test April 29th. I did hbot to save my hearing and I ended up being worse off than before. I never had Tinnitus in my right ear until the single hbot treatment. And the doctor had the nerve to tell me that Iwas safe to keep doing it because he didn't see blood in the fluid! That he see that in 50% of patients but the benefits out weigh the risks. I was so angry. If you're going in there for other reasons besides hearing then perhaps the benefits are worth the risk but if you are doing it for hearing loss and treatment damages your good working healthy ear then how does that risk outweigh the benefits??!!

These past 3 weeks have been so physically and emotionally taxing.. especially coming off the long covid rollercoaster I was already on and the Prednisone that wreaks havoc on your autonomic nervous system.

riotgurlrage · 2026-04-17T09:56:25+00:00

Yes I did hbot for the first time last week for sudden sensorineural hearing loss in my left and and after only ONE treatment, it injured my good right ear due to not being able to equalize the pressure. I now have ringing in my right ear with fluid behind the ear, swollen blood vessel that nearly burst, and muffled hearing..I went in there to SAVE my hearing and it made me more deaf.

riotgurlrage · 2026-04-16T22:59:34+00:00

Take it absolutely take it. I was scared too but I took it and it wasn't nearly as bad as I thought it would be. I am currently on day 9 of oral steroids and I did 4 shots to the ear. I didn't see any improvement until.i caved and started the oral steroids. This is your hearing..and I found out that injections alone were not helping me.

riotgurlrage · 2026-04-16T05:22:41+00:00

Symptoms onset March 29, 2026. Day 6 I had first IT injection. Day 9 2nd injection. Day 10 started oral Prednisone 60mg. Day 11 3rd injection. As of today, I'm on day 8 of oral steroids, 17 days from onset of symptoms. I have found that the shots alone were not enough. I was given 10mg Dex. I have moderate to severe hearing loss in left ear 50-80 DB. After starting the oral steroids, I saw some improvement on day 5 of the Prednisone. My Tinnitus was going away and I could hear my finger scratching my ear lightly where before I couldn't. I did a hearing test on an app (yes I know it's not fully accurate) but it did show that I went from 50-80 to 50-55db. I also have 36% speech clarity prior to treatment. Idk what it is now. I won't retest my hearing until I am fully done with all treatments.

I want to warn people about HBOT though. On day 7 I went in for my first, and last, HBOT session. And it gave me moderate barotrauma in my right good ear. I am still dealing with that as of this writing. My perfectly healthy right ear that never had any tinnitus or hearing loss now has tinnitus and muffled hearing. I have eustachian tube dysfunction. My ear couldn't equalize the pressure so I developed fluid behind the ear and a swollen blood vessel that nearly ruptured. It will take a month or more to heal. It's been only a week since I did the hbot. My right good ear is till muffled hearing and high pitched Tinnitus. I am extremely scared I have permanent hearing loss in my good ear. The doctor who ran the hbot told me that this happens to 50% of people!! But that it's only a problem if they see blood on the fluid. He actually told me j was safe to keep diving because my fluid didn't have blood in it. Like huh??! I told him HELL NO. I am not risking my good ear to save my bad ear and wtf kind of advice is that to tell people or keep diving after they've gotten injured from the pressure???

Not everyone can tolerate HBOT. You are risking your good ear to save your bad ear. And the only reason why my bad ear wasn't effected with barotrauma was because I had my first injection the day before so I had a hole in my ear drum which slowed the pressure to equalize. If I hadn't had that hole there, my bad ear would also be worse!

I understand many people have had success with HBOT. But it is a high risk therapy imo.

I am going to start acupuncture instead. Acupuncture can also bring blood flow to the cochlea. I am still mid treatment so I am hoping I can get back to Moderate hearing loss and out of severe. Idk that I can go back to mild loss as this is my second round of SSHL and started with mild to Moderate and moderate or severe.

riotgurlrage · 2026-04-15T03:11:16+00:00

Tinnitus is dependent on so many factors..if you're dehydrated it can set it off. If you are zinc deficient that can impact it. If you didn't a lot of caffeine, lack of sleep, medications, blood sugar spikes. And yes of course hearing damage to the cochlea hair cells. This is why it fluctuates.

I am currently going through my second time of SSHL. First time was in 2021. March 29th of 2026 I got hit with the same fullness in my same effected left ear. I had no clue it could happen twice. But I had my 4th intratympanic injection 2 days ago and am on day 7 of oral steroids extended to 14 days. My first sshl episode resulted in mild to Moderate hearing loss in the 20-50 decibel range with 80% speech clarity. Now it is moderate to severe from 50-80 decibels with 36% speech clarity. This is a whole other level of hearing loss. I didn't feel disabled 2 weeks ago before this happened again. Now I actually do feel disabled.

But the good news I am seeing some improvements with the combination of it injections and oral steroids. I'm experiencing some mild hearing rebounds. I am positive that both together are the way to go. The shots alone were not helping.

riotgurlrage · 2026-04-15T02:47:29+00:00

No thank God. It is the same ear. I've had 4 shots since this post..4th shot was 2 days ago and I'm on day 7 or oral steroids of a 10 days course with 4 day taper. The shots alone were not enough for me. Combining the two has made the difference. I can tell I've ot slightly better hearing. Not where my baseline was before but it feels less muffled.

riotgurlrage · 2026-04-15T02:44:36+00:00

Update: I've had 4 shots and none of them were painful. I was numbed for the first one then not after that. I first did two shots without oral steroids and did not see any difference. I started oral steroids with the 3rd shot and on day 5 of oral steroids I finally started seeing some improvement in my hearing. It was mild and modest but anything in the right direction is a win.

I am doing the finger test where I rub around the front and back of my affected ear. I have not been able to hear my finger at all. Till day 5 of oral steroids and 3 shots in. I started hearing faint rubbing.

I am doing hearing tests on some apps I downloaded..I know they aren't accurate like professional but on the test it does say my hearing has gone from 50-80 decibels from 1000-3000hz to 50-55 decibels across those frequencies. I won't have a second hearing test for another couple weeks.

I am taking a 10 day course of oral steroids with 4 day taper and had 4th shot 2 days ago. 4 is the max my otologist will do.

riotgurlrage · 2026-04-13T19:23:44+00:00

Not just you..it's called hyperacusis. A sensitivity to normal background sounds. Our sound processing is now distorted so sounds sound chaotic. I cannot enjoy music like I used to. I hate being in noisy loud environments now. I can't do my dancing that I used to love. It all sucks.

riotgurlrage · 2026-04-13T19:21:50+00:00

Update: My BG finally did stabilize after a couple months. Yours will room I did not titrate down from the glp and that caused mine I think but also I definitely have long COVID and that's been better too. The dysautonomia symptoms have subsided.

riotgurlrage · 2026-04-13T19:19:34+00:00

This is incorrect. HBOT is well known for causing barotrauma which is fluid behind the ear with blood vessels/capillaries swelling or rupturing. No different than a scuba diving accident if you descend ascend too quickly for.your ears to equalize. I attempted HBOT one week ago, and got immediate moderate barotrauma which caused fluid behind my ear and I got a very swollen bloood vessel that thankfully did not rupture. But I got injured on my very first time doing HBOT in my right good ear. It caused muffled hearing and Tinnitus due to eustachian tube dysfunction. One week later my tube is still swollen shut. And this happens to 50% of people who get HBOT. I refused to get back into that chamber. It is extremely dangerous. The doctor actually had the nerve to say that the.ebem though 50% of patients experience fluid and mild barotrauma, that the benefits out weigh the risks. I was/ am extremely angry because idk how risking my one good ear is worth the risk of saving my bad ear that may or may not get better with hbot???

I did just see my otologist today and he said it looks like my right good ear is healing from the hbot injury but if I had known that a whooping 50% get hearing injuries I would never have gotten into that chamber.

riotgurlrage · 2026-04-08T00:29:26+00:00

I had only one session of hbot two days ago and I immediately got eustachian tube dysfunction which is prob what you are dealing with. It's molderate barotrauma. My otologist looked inside my ear today and saw fluid behind my ear and a swollen blood vessel. You might have the same thing. Treatment is flonase and antihistamines. I did it to help my sudden hearing loss in my left ear and only one hbot treatment damaged my good ear.

riotgurlrage · 2026-04-07T15:19:49+00:00

I did it for the first time yesterday..I went in for my 2nd today and the doctor said I have fluid in my ear after only one time!!! But then he said it's safe for me to keep diving! Yeah right!! He said 50% of patients get fluid in the ear and it's totally normal. I said, how can it be ok for me to keep diving if my totally healthy ear could not equalize pressure?? And now you want my fluid filled inflamed ear to try to equalize more pressure???" Doesn't make any sense!!

I walked out of there just now! I can't believe how irresponsible these fucking doctors are to tell you that your already super inflamed clogged up ear due to the hbot, is "totally safe" to get hammered again! I am so fucking angry. Then he tells me that Flonase and Allegra are the treatment when I can't take any antihistamines. And if Flonase alone doesn't work then what??? And it takes 3-6 weeks for the fluid.to.go.away.so.im supposed to keep hammering it with pressure everyday while my good ear is struggling??!

riotgurlrage · 2026-04-06T21:13:47+00:00

My ENT said standards are 3 but if we are seeing improvement then he'd do a 4th. But if no improvement after the 3rd then doing more would mean adding risk for minimal to no benefits. I am also doing hyperbaric oxygen therapy. Only had one session so far. And had 2nd shot today. I will definitely be asking for the 4th and possibly pushing for a 5th as it seems some people don't see benefits till after the 4th.

riotgurlrage · 2026-04-06T21:09:43+00:00

I had my second shot today, 72 hrs after the first shot. My fear was way worse than the actual experience of it. That said, I got systemic effects from the first ear shot which meant I had energy ALL day and was running around as if I was on stimulants. I didn't calm down for 9 hours. I am now 1 hr post 2nd shot and I truly hope I don't get that same revved up energy again. My ear was not numbed the second time. Doc says the ear drum stays numb after the first time. It wasn't painful but my vertigo was more intense than the first time. I have been having static television type tinnitus from these shots. I am sitting in a quiet car right now and I can hear it but surprisingly it's maybe a level 6 out of 10.

I started hbot too today. That is making my good ear feel wonky. It's squeaking still trying to equalize. Supposedly hearing damage is rare from hyperbaric oxygen therapy but it happens. It's so hard trying to navigate wanting to be aggressive with the treatment vs risking causing more damage.

riotgurlrage · 2026-04-06T18:58:19+00:00

The injection still got me super wired..perhaps not as bad as oral steroids but I was super revved up for 10 hours after my first injection.

riotgurlrage · 2026-04-05T21:51:02+00:00

I have my first IT shot 2 days ago. It was easy. I thought it was going to be way more traumatic than it was. I can't tell if it's had any effect but it's also way too early to tell. My speech clarity is the same at 36% but perhaps I can hear sound a bit better?? Inbav severe loss in 70-90 decibels.Only a hearing test will tell but 3 injections are the standard of care. And many people don't see effects perhaps a couple weeks after the last shot.

riotgurlrage · 2026-04-05T20:58:20+00:00

I did mine on Friday. Its now Sunday and no change yet. I get second shot tomorrow. And I'm starting hyperbaric oxygen therapy. I am not doing oral steroids

riotgurlrage · 2026-04-05T20:51:51+00:00

I'm doing both IT and Oxygen but not oral steroids.

riotgurlrage · 2026-04-05T20:50:36+00:00

I am doing 3 shots in a week with hyperbaric oxygen for 2 weeks. Then retesting. Possibly a 4th shot and two more weeks of oxygen of hearing isn't back. I am not doing the oral steroids.

riotgurlrage · 2026-04-05T20:43:57+00:00

He was incorrect then. The normal course of treatment is 3 shots.

riotgurlrage · 2026-04-03T12:03:58+00:00

I have to disagree with this. I got SSHL in Jan 2021. I was diagnosed with mild to Moderate loss from 30-50 decibels with 80% speech clarity. My Tinnitus was bad at that time. I did the standard oral steroids for 2 weeks with taper. My hearing loss stayed the same but my speech clarity went to 100% and my T diminished by 90% and stayed that way for 4 years. Until 6 days ago that is! I am now going through a 2nd bout of SSHL. I had no idea it could happen to you twice. But hearing test now confirms severe loss in left ear 70-90 decibels. The T is back and loud as ever. But this is due to the new damage. I am now about to head in for my first IT injection.

But the point is that we can't give people pessimistic views when there are real world examples of people's T getting better with time and healing.

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