Tinnitus in China + HIV

[infVM]

Hi all, thought I might add myself here and hopefully it'll help me (or like me) in the long run.

I live and work in China (5 years now) and 3 weeks ago got a horrible flu which lead to an ear infection that caused my tinnitus and 25% hearing loss in the right ear. I don't speak Chinese so this added up to the problem of fixing things at the right time and place.

When I got to the hospital for the ear infection they gave me antibiotics and it healed quickly but the tinnitus and hearing loss have stayed and don't wanna go away. I got this high frequency sound that is noticeable only at silence or when I'm thinking about it. It hasn't changed since, it is at the same level.

I called a few people they suggested another hospital, went there, lots of tests, MRI, scans, audiological tests (proved my hearing loss in the right ear) and so on, then they put me on some medication, steroids plus some other stuff and said maybe it'll help but in their experience it helps only to about 30% and if no changes within a week then there is nothing can be done. Well this is my case now, unfortunately.

BTW steroids they put me on can't be longer than a week (in my case), at least in China, they say it's very unhealthy.

The tinnitus thing is definitely gotta do something with our perception of it cause when I got it I didn't really think about it and slept well, but after hearing and reading all about tinnitus, everything that I know now, I felt really helpless and this did a thing on me in terms of sleep. I guess it'll take some time to adjust.

Now the day the doctors told me about my ear thing and tinnitus in general (and translation was really bad cause they don't speak English and I don't speak Chinese so it was a nightmare to communicate) they came to my room one day (where I was getting an IV) and said that my blood test is not good and that I got HIV... The next morning blood test confirmed it. Wow! Great news! Anything else? C'mon gimme more!

There I was, all alone in the room, no one to talk to. The way they brought the news to me was very normal like it's not a big deal although I do know how scared Chinese of HIV, like everyone else in the world.

I was in that room, thinking about it: so not only I got HIV but also this shitnitus that may stay with me for the rest of my life and that it can get worse. Really I was not doing well.

By the way, I don't know whether my flu the outcome of HIV or a real flu. I don't know.

Now, 3 days later I decided to fight HIV and the tinnitus thing and actually I was thinking that if I had only HIV (which is manageable now) I'd be totally fine but I guess life has prepared something more interesting and challenge-able for me and something that I've definitely earned. I guess.

I am going to the US in a couple of weeks (bye China - you've been great!) cause I wanna get proper HIV treatment + I don't think I wanna stay in China after what happened, although I know I'm the only one who is responsible for everything that happened to me. Could Chinese doctors put me on steroids on the 2nd day I went to the 1st hospital for my ear infection thus perhaps heal the tinnitus? Yes. Did I tell them at the first appointment that I have this hissing sound in my ear? Yes. But I guess they like many other ENT doctors who don't care much. But you know what I don't blame anyone. Whatever happened has happened and there is nothing I can do about it now.

I know some ppl say they got tinnitus because of the anti-HIV treatment... Well I guess in my case it'll be the other way around - I wonder if HIV treatment will somehow interfere with my T and I hope it won't (in a bad way) cause I don't think I'm that strong to face another challenge.

Now my problem is that being away from the US for a long time I lost my residency (NJ/NY) and in order to get HIV treatment with reduced cost I gotta have it.... Another challenge for me cause I wanna start HIV treatment asap but not sure if I'll be able to - I guess my first visit to Ryan White center will tell me.

Right now I feel not good to say the least but I am trying to cope. F***k T and HIV - I'll fight you and you won't stop me from being who I've always been!

 

[Bill Bauer]

How do you think you got HIV?

 

[Hazel]

What a terrible experience for you! It really sounds like a nightmare, sorry you're going through this

It will take time, but I think you'll be OK.

As you probably know, HIV is a manageable condition these days. Although from what you said, it might still take some effort to get access to the right treatment. Even so, I think many HIV drugs have by now been around long enough that they're off patent (and thus cheap) or for the on-patent ones companies tend to have access programs for patients who can't afford them.

Tinnitus, for most of us, is horrible to deal with in the beginning, but the majority of people manage better and better over time.

I hope you'll have some more social support back home than you've had in China; that's really important.

How do you think you got HIV?

Wow, Bill, how is that even relevant? Way too personal and doesn't exactly convey a lot of empathy.

 

[Bill Bauer]

Way too personal

If he doesn't feel like answering, he doesn't have to answer.

Wow, Bill, how is that even relevant?

I'm curious.

doesn't exactly convey a lot of empathy

The empathy got conveyed when I clicked the "hug" emoticon underneath his message.

 

[Bill Bauer]

@infVM Check out
https://www.tinnitustalk.com/thread...eone-else-who-has-tinnitus.26850/#post-307822

There are several potential tinnitus treatments in the pipeline:

Hearing Regeneration Trials

Spoiler

Frequency Therapeutics - FX-322
in Phase 1.5 (Results: December 2018)
Phase 2 (begin 2019)
Audion / Regain Trial
Phase 1/2 ongoing in the UK
Genvec / Novartis - CGF166
Phase 1/2 ongoing

Trials to begin in 2019 / Things to look out for in 2019

Spoiler

Neuromod (MuteButton)
launching their new device in January 2019 starting in Ireland, then Europe, then the US
results of their latest trial: 1H2019
Xenon Pharma - XEN-1101
Phase 2, expected to wrap up in 2nd quarter 2020
Frequency Therapeutics
Phase 2
Otonomy
1H19: OTO-313 (reduce tinnitus) Phase 1/2
1H19: OTO-413 (repairing synaptic damage) Phase 1/2
OTO-6XX (hair cell regeneration)
2H18: candidate selection
2019: Phase 1/2
University of Minnesota (device for tinnitus)
Phase 3 ?
University of Michigan (device for tinnitus)
perhaps updates on their currently ongoing trial
Estimated Primary Completion Date: September 2022
Estimated Study Completion Date: January 2023

 

[Bobby B]

Prednisone will reduce the ability to fight infections so with HIV I would be very careful

I still think your T will improve over time but it's going to take much longer than you think. Give it 2 or 3 years and your t will dim to a very faint hiss which is easy to ignore

 

[infVM]

It's a tough time for me right now but I think I'll manage it. HIV vaccine is on the horizon and hopefully some co. will introduce something good for tinnitus as well so it is totally possible that I won't have HIV and T in 10 years.

The very thought of it that I'm in a deep crap right now in 2019 and maybe totally free of it in 5-10 years makes me feel better. Although I do think that to fight T is way more difficult and challenging and time consuming than HIV.

I kinda never thought I'd ever have something worse than HIV And I got it and all at the same time. I look at people that just got HIV and nothing else as they have really nothing. Interesting that I had no idea what T is just a few days ago. They don't tell you that T is WORSE than HIV. Incredible just to think about it.

 

[infVM]

How do you think you got HIV?

I know how I got it, it's no biggie. I could've used protection which in 95% I always did in my life but I didn't at that time a couple of months ago.

It's all my fault and I don't blame anyone. I deserved it.

 

[infVM]

Anyway, just went back to the hospital in China, they wanted to do another audio test although I told them that the hearing loss is at the same level but they wanted to see the progress from IVs I'm still doing anyway (today's an 8th day).

After the test the doctor came to me and said (translation): bad news, results are not good. I asked well is it the same as we did a week ago or worse? He said "just the same"yes..... Well to me it's a big difference between "bad news" and "no change" knowing that I said b4 that there is no change in my ear. He could've just said "no change", "the drugs are not working as of yet or won't at all". This is just a tip of the iceberg in terms of how Chinese culture is different and it's OK but being here for such a long time I couldn't get used to it The was told me about HIV was interesting too.

I know about my HL that it's not gonna change (in my case at least) just because I have this high pitch noise in a ear that is manageable right now cause it's not that loud and I don't hear it if I don't concentrate on it (sleep reduced to 5-6 hours though) and this noise is related to the hair cells (or something) that bacteria (ear infection) destroyed and this sound in my brain is trying to replace them with (I guess).

What's interesting is that how badly designed a mammal's body is - simple ear infection damaged something in the cochlea and our bodies just ignore that like it's insignificant. Yeah people don't die because of that but mammals in nature... I assume HL for mammals in nature is crucial too and they can't survive without it but I guess nature doesn't care about it, which puzzles me in a way. Lizards can grow tails back but ears and hearing thing... Amazing and sad.

Another thing is that we can land an object with cameras and stuff on Mars (billions of $) but T and HL is at the same level as it was centuries ago and it's sad that governments don't give a damn about it. Oh yeah Mars and stuff is SO much more important

OK, I got a ticket back to NJ/NY and can't wait for this to happen. Why 2 weeks of wait - gotta finish all my things here in China b4 I say goodbye. Since I won't have any income immediately in the US I really hope I won't be denied of any programs that support people with HIV cause as of T and HL it's all understandable that we're on our own all about it but HIV thing - there are drugs that I gotta be on asap and I hope they'll accept me for treatment. Otherwise it'll add to my anxiety and stress that definitely will lead to increase of the T and HL and I don't wanna even think about it. Would they understand it? Hopefully.

Interesting how life is: just in December a few weeks ago I was a healthy guy (well with HIV as it turned out), had perfect hearing, no flu no ear infection no nothing, actually just bought expensive Bose headphones 'cause I love music... And now I'm a different person, "I'm not half the man I used to be". So interesting.

By the way, anyone can ask me any questions - I am not sensitive about anything cause I don't think there should be any sensitivity among people who have the same shitnitus. Including HIV. If you're in NY/NJ I'm open to meet or communicate 'cause sharing experience is helpful (I think). Again, I'll be there in 2 weeks if there won't be an airplane crash (unfortunately .

P.S. I wish I believed in God.

 

[Bobby B]

Consider yourself very lucky to get HIV in 2019 and not in 1989

Back then this was a death sentence no matter how wealthy you were

How will a vaccine help people who already got HIV?

As for the ears don't do tests every few weeks healing does happen but it is extremely slow give it a few years it will improve a lot

 

[infVM]

Consider yourself very lucky to get HIV in 2019 and not in 1989

Back then this was a death sentence no matter how wealthy you were

How will a vaccine help people who already got HIV?

As for the ears don't do tests every few weeks healing does happen but it is extremely slow give it a few years it will improve a lot

The more I read about HIV the more I know people that are doing totally fine now and they had HIV+ in 1985 even 1982. I guess bodies are different but Freddie Mercury died... Maybe he didn't get any treatment or something.

About vaccine, what I meant was that if they discover the vaccine I hope they could kill the virus in POZ people.

Tinnitus and hearing loss - of course I'll take time and I'll do some other stuff people were suggesting here, just wanted to share some info with all. My goal is not to go nuts in the time being. I'm trying. I do hope to be here one day and write up a success story. I DO hope I'll do it.

 

[Bill Bauer]

Another thing is that we can land an object with cameras and stuff on Mars (billions of $) but T and HL is at the same level as it was centuries ago and it's sad that governments don't give a damn about it. Oh yeah Mars and stuff is SO much more important

I agree!!!

 

[Bobby B]

There was no treatment back in the eighties I knew a few people who got HIV then AIDS and died doesn't mean everyone died but the ones getting AIDS did.
We were all scared back then for sure and used extra protection.
I wish we were more informed about tinnitus as well and scared to the same degree that would have avoided many issues for me at least.

 

[infVM]

Yes, we all learn the important stuff after the event and just say "I wish I knew". But it's too late. So sad.

 

[billie48]

I got this high frequency sound that is noticeable only at silence or when I'm thinking about it. It hasn't changed since, it is at the same level.

Welcome to the forum. Sorry I don't know much about HIV so I can only comment on your T. Living with tinnitus, it is best we can try (as humanly as possible) to remain positive as this will reduce the stress and anxiety. They both can aggravate T and can trigger or reinforce the fight or flight response of the body and keep the limbic system active. From your description above, your T, though quite an irritation to you, seems to be of a milder type. Some of our members here, myself included, have T that can be heard over anything. Mine can be heard over the jet noise in flights, and over the raging rapids in the salmon rivers I fish when it is spiking on the worst days. Others can have pulsatile T or hyperacusis going with it (like in my case initially). So try to be positive even though you are suffering from your T, that it may be a milder form which hopefully can fade even more over time. Your T is quite new. It can improve over time being a mild form. Try masking it if it really bothers you. Nowadays there are many apps on smart phones with tinnitus marking nature sounds. Try to read over the success stories so you can remain positive and calm with a bright hope that you will become better like others. I share my success story below to give you an idea the hell I went through and the good time I am enjoying now. So don't be too worry about the future. Take good care. God bless.

https://www.tinnitustalk.com/thread...w-i-recovered-from-tinnitus-hyperacusis.3148/

 

[infVM]

Welcome to the forum. Sorry I don't know much about HIV so I can only comment on your T. Living with tinnitus, it is best we can try (as humanly as possible) to remain positive as this will reduce the stress and anxiety. They both can aggravate T and can trigger or reinforce the fight or flight response of the body and keep the limbic system active. From your description above, your T, though quite an irritation to you, seems to be of a milder type. Some of our members here, myself included, have T that can be heard over anything. Mine can be heard over the jet noise in flights, and over the raging rapids in the salmon rivers I fish when it is spiking on the worst days. Others can have pulsatile T or hyperacusis going with it (like in my case initially). So try to be positive even though you are suffering from your T, that it may be a milder form which hopefully can fade even more over time. Your T is quite new. It can improve over time being a mild form. Try masking it if it really bothers you. Nowadays there are many apps on smart phones with tinnitus marking nature sounds. Try to read over the success stories so you can remain positive and calm with a bright hope that you will become better like others. I share my success story below to give you an idea the hell I went through and the good time I am enjoying now. So don't be too worry about the future. Take good care. God bless.

https://www.tinnitustalk.com/thread...w-i-recovered-from-tinnitus-hyperacusis.3148/

Thank you. I'm trying. I hope my hearing loss won't decrease. Too bad that our bodies can't regenerate anything on that level.

 

[billie48]

Thank you. I'm trying. I hope my hearing loss won't decrease. Too bad that our bodies can't regenerate anything on that level.

Some members have reported positive improvement using stem cell treatment which is supposed to regenerate the hair cells in some way. You may want to go the forums on Treatment & Alternative Treatment or research information to find something interesting.