ErikaS

So frustrating! Back when I first got tinnitus my Otoacoustic emissions showed a dip in the right ear but my left ear was the one screaming

In my case it did, luckily!

This is me. My left ear is the one with the ringing but hearing test said it was the right with the loss.

And it can't be seen heard or felt by anyone but us :(

@ErikaS. Have you tried hearing aids? They have dramatically reduced the ringing in my ears.

@Anthony2019 I have reactive tinnitus and my sudden hearing loss was at 12k hz and up in my right ear, I don’t believe hearing aids would help me.

@ErikaS That's a pretty good suprise. I've been pretty much isolated from my friends since this happened.

@Ryan Scott Have you tried a small quiet visit with/without protection? It’s very good for the mental health if you’re able to.

@SamRosemary @Strawberryblonde thank you ladies! :)

Unfortunately, I had a conversation with Dr. Minbo Shim, and he said that he tried standalone growth factors, but they didn't work well enough. Only the PRP worked. From what I read, lab grown exosomes don't have all of those growth factors. Also, PRP is supposedly to be sticky when warm, which I don't know if exosomes are.

Also, based on what I read a few months ago, growth factors also encourage differentiation and proliferation of stem cells, so it sounds to me that they must go together to maximize potential effects. This is the route I will be taking. I might also get the standard stem cell treatment from the AZ clinic as well as see if they'd be willing to talk to Dr. Shim now that I have the time to make the calls.

Very sorry you haven't had recovery yet. Very strange for some people in studies of growth factors and stem cells after a significant amount of time but very few here. Makes me wonder why.

@ErikaS my T has been sounding more like the buzzing of bees lately so I thought it was calming down but tonight my ears are legit SCREAMING.

@ZFire Lower frequency sounds like my fridge or our baseboard heating still affect how it presents but tend to drown out more, thank God. But anything higher frequency and constant, no good.

@Joe Cuber I pray with all of me that the Michigan Device can calm down reactivity!

If I had nonreactive tinnitus that bothered me, I would definitely get sound generating devices to help mask/distract me from the tinnitus. Unfortunately I have the reactive component, so I hesitated. I even asked TRT lady if we could do hearing aids and try different things with amplification or the opposite, but she didn’t feel that would fit my situation…

She thought I could tackle my reactivity and tinnitus with sound generating devices, but I was nervous with that given stories on here. Believe me, if there was something that I felt that could help me now That wasn’t stem cells and the money it cost us, I would have tried it.

@ErikaS I'm saving up our tax returns and whatever else, following testimonials here also. I'll get the money, I just want to make sure that I spend it on something that has been tried and true. I appreciate your efforts with the stem cell stuff. I'm curious to see how it turns out for you, I sure hope it helps you!!

@ErikaS Same here its like I use all my will power to try and stay optimistic ensuring myself I will live a normal life again. Then spiral down hill for a few days were T gets me super stressed and depressed. I want to be my normal self again so bad but sometimes it gets the best of me.

Same, I will have periods of good mental health, then some kind of spike will set me back. It really is a cycle.

@ErikaS It does get overwhelming for me too, it's a lot to deal with. But we're dealing with it! Two steps forward and one step back is still a step forward in the right direction!

Honestly, I’ve had some of my best days the past 3 days. Some rough/annoying moments, but overall pretty manageable. Thanks for asking. How about you?

@ErikaS good to hear. I had a good two days and back to bleh lol

@Wrfortiscue yeah, my ears got word that I was enjoying a few good days so they decided to be more testy today ;( if only progress could be linear.

@ErikaS - do you manage to do all that without ear plugs?

Yes, @DeanD … ear plugs make my tinnitus sound louder and I hear the reactivity/spike more with them in, which screws with my mental state too much. These are not every day repeated tasks though, far from it. This was a “good day” which happen randomly and rarely.

@ErikaS - weird, as mine is the total opposite. T is slightly more quieter in ear plugs than without. I need to get off them! Tough!
I'm really pleased for your good day :) - hopefully many more to come!

@Guywithapug I know I was very nervous about this. My in laws booked it months ago for all of us so I didn’t want to be “that one” to bring it up, but I did and my mother in law already checked with the resort and their transportation and it sounds like safety parameters are good.

@scotty03874 I was hesitant to put this in writing becuase I don’t want to jinx it, but if there is something that has shown a difference/change in the last 4 days, it’s my high oscillating electric hiss. Still has its moments, but it has calmed down reactive & intrusive wise. Lower tones are still there & not changed, but as we know in the cochlea, the freq. sitting first past the round window are the high ones..

@scotty03874 So WHO knows but I have noticed this while watching TV, doing daily things around the house, etc. Not celebrating it by any means at this point, the true test will be when I get my monthly cycle as the high electric hiss tends to become its worst then. But, just thought to share.

@Strawberryblonde It is pretty mind boggling how some people just heal and not others. I was perfectly healthy, took vitamins, and got on steroids within a couple days after the onset. Which nothing has seemed to help but why others just heal is a mystery.

i have known people in the past who went to loud places, gigs and used headphones and not even have a hint of T to show for it. Me i got it at 24 :( @Ryan Scott They must have some good genes or just damn lucky, us not so much.

There are people on the forum who report of reactivity improvement beyond 6 months. Sadly, frustratingly and irritatingly it's patience and time could be the best healer.

If the exosomes were lab-made, then it sounds like a similar situation with the lab-peptide version of IGF-1, so that may be encouraging for me. It all depends on what growth factors are in them and the dosage. I read online from (non-medical) websites that anything beyond 300 mcg was a risk.

@ErikaS What is the name of the laser treatment?

I hope the stem cells work out for you

Thank you, @Ringing_seal ! It is called LumoMed laser. Right now the only clinic in USA that has them is Advanced Rejuvenation in Sarasota.

Hey @Artemis2K , I’m hanging in there ! Your research sounds valid, I am just stumped on where/who you could turn to discuss the IGF-1 for intratympanic or behind the ear administration along with exosome use? Maybe Innate Healthcare?

My first contact will be Advanced Rejuvenation in Florida since they still do IT-injections. I will go through every option that's known of.

I have an oscillating morse code in my left ear. Up and down, dull and sharp sounding then it dissappears then comes back. I got no chance of matching that tone haha @ErikaS how are you holding up with all this as time is going on?

@Strawberryblonde yesterday was a quieter day, but today was one of my most intrusive days. I think the sensitivity and loudness is the aftermath of my travels as well as the interventions. I was aware things could be sensitive for a little before calming down and then hopefully improving, it’s just hard to live it and stay calm :( this ultra high T that radiates in ears and head is the worst.

Having a good days goes to show the T can do it if it pleases. It's a shame that normal life including travel tends to spike it. Take the spike away and your half way to being OK :) @ErikaS

Agree, @Jupiterman .. I just wish that spontaneous recovery was more equal across the T board, and not just seem more with those who have one or two constant sounds and no reactivity, hyperacusis, etc. Shoot if I could just get spontaneous recovery with reactivity alone I would be more than half cured.

This is interesting, how did he acquire it and how severe was it, i.e. how long did it bother him before going away?

@tniuf He has hearing aids now so I would say start of hearing loss? Because he said he got it and it was gone before he got the hearing aids. It was with him for 8-12 months and he said it was very annoying in the quiet, watching TV, and going to sleep. So his was a constant, non reactive sound. Something I so wish I could experience compared to my crap.

@Guywithapug It is AWFUL. All because I had some sudden loss at stupid high frequencies that we don’t even need for speech -_- … On those days you randomly get where you say “T and reactivity at a 1”, does this electric hiss just sound like a quieter hiss and stay quiet and less intrusive?

@AnthonyMcDonald very solid decision! Lol I hope you really enjoy it and T takes a “back seat” for the trip, you deserve it!

@ErikaS yes, like yesterday all I had was t at a solid 1 and almost no reactivity. Usually only lasts a day but I've had it last as long as 4 days in the past.

Same here, I habituate great to my T but the new T is like my high pitch electrical that now converts to a instrusive beepp, and this is new and I can get habituate but maybe I can with time.

Is crazy some people find certain T disturbing but for others they can habituate very easily, I always hear here that beep tinnitus is the most easy one to habituate but for me is the worst.

Like I mentioned in my previous post I've experienced beeps, drone humming, lights saber sound, dentist drill, eeee, wine glass humming hissing and electric zaps (zinging) . I know exactly how you feel I'm confident you can overcome this @NYCGuy we believe in you

@ErikaS Yes, I have multiple tones (or rather noises) and have reactivity.

Opposite for me, anything I do with my mouth/jaws will make it louder while I do that movement. I'm not sure my tinnitus is actually somatic caused though considering how many noise people also have that effect

For me it's the opposite, when I open my mouth wide it triggers my electric T, in only one ear. Totally connected

@Strawberryblonde ugh so sorry the cold had affect! Hopefully that fades as inflammation goes down.

God I hope so!! A cold has never been an issue with my old T level but this time it's so high pitched and felt, nearly crying with how frightened I felt with it last night.

@Strawberryblonde I know that “felt” feeling all too well. I strongly believe one being able to “feel” their T versus someone who doesn’t is a huge debilitation difference and absolutely affects habituation. Because when I have brief moments where I don’t feel it, it’s amazing.

@Sammy0225 thanks for your kind words! I also hope you are doing well! Right now it is very high, but I am confident with time things will settle, i will let you know and for sure we will crossing messages through TT. All the best!

@ErikaS yes, i have ETD also, and sinus rinse are not good for people with ETD, unfortunately I believed the wrong ENT :( Due to noise trauma, my t since 2017, it was at the beginning with some tones, then changed for a kind of morse hiss. Right now, due to ETD and sinus rinse I am having changing tones, they are settling a bit, i think the tendency will go to a hiss also, i will let you know!

@ErikaS I have read you have high frequency hearing loss, i am sure it will tend to a hiss, let me know and be patient! Ears need a lot of time to heal. You could try from time to time magnesium or NAC, melatonin can help also. But do your research before! And if you are at 3.5-10 it also may be better to be patient, and let the time make the healing!

The ignore button comes in handy for them lol

There are definitely a lot of wonderful people here. I try to ignore the people that put an effort into ruining people's hope. People have different ways of handling obstacles and those that try to regulate that are presumptuous and often rude.

@Amv honestly since onset my T was always lower at baseline. However I gained more tones as time went on when I got sick, and it is sound sensitive/reactive, especially my ultra high tones/electric hiss, so that will become more intrusive with constant running sounds or like watching TV. My T stays between a 3-5/10, it’s truly the only good thing about my T.

@Amv i don’t think the shots did anything honestly. I was 4 months out from ear infection that caused hearing lass/damage in R ear so it was literally throwing something at the wall to see. No notable improvement following that.

@ErikaS that sounds great! A 3-5/10 is a good sign, I am sure you will improve, achieve habituation and it will keep getting less intrusive, pretty sure about tat!

Thank you, you too @SarahMLFlemmer :)

@Sammy0225 are you still mainly battling 2 tones? Or does it fluctuate and more come back and go in and out?

Definitely does suck I think a big factor was at my job to get inside my work station there was a mechanism that made a loud popping sound each time I badged in. It would make my ears clinch everytime. I feel this might have started the ear sensitivity thing @ErikaS

As for the tones most of time it's two tones but lately they all have been going haywire 3-4 tones with wine glass reactivity ugh I hate it Erika :(

Definitely!! I had covid in Sept 21' and it lost the same, it came back very slowly :)

Me too in August 2021. It was quite unsettling to loose the smell. My taste is 100 percent but I’d say my smell is weaker. I often think have we (recent T sufferers) been weakened somewhat by C that we are have become more susceptible to have picked up T. I got my T from a cold last year, It was a mild cold.

Amen! <3

Oh my gosh, @PlaceHealth first of all I am flattered by your comment. Thank you for being so kind. This picture is a year old or so. Although that is me and I have managed to look like me on very few occasions these past 5 months, I too have fallen apart from lack of sleep and mental instability.

@PlaceHealth I also lost my R ovary a month before T happened. My hair has thinned & I have lost weight. I miss the girl in my picture terribly, BUT I am fighting like hell to get her back some day.
Please give yourself grace. This is one of the HARDEST ailments to endure. We are surviving & fighting our way through it & we have to believe we can improve, but in the meantime give ourselves love & grace <3

@ErikaS my apologies Erika I was reading the post to quickly. When you say shakiness do you mean like your vision shakes around? That's definitely a big sign of concern, how long has it been happening?

@Sammy0225 @tniuf it’s not all the time or everything in my line of vision at all. It’s more like right now sitting in the living room and looking at the mantle and the edges of the still objects have a little fuzziness or shake to them. But if I’m looking at my husband talking or going about doing things my vision is normal. I am near sighted and definitely have difficulty seeing further away even before T.

@Sammy0225 @tniuf I had MRI and CT and both were clear so I’m not worried about anything that could pertain to those types of results, but it is noticeable enough for me to take note. Just some general Google searching I came across how inner ear damage/hearing loss can affect vision in quite a few ways.

@ErikaS They supposably don't block out all sound just enough to calm everything down I'll let you know if they help the reactivity (:

@Strawberryblonde it definitely is taxing but with practice it's possible. I unfortunately have never been able to mask my Tinnitus up until recently I slept for about 7 months with no masking my brain eventually got use to it at some point.

@ErikaS https://www.amazon.com/FLARE-AUDIO%C2%AE-Calmer%C2%AE-Translucent-sensitivities/dp/B08KHJKC4V/ref=mp_s_a_1_3?crid=3IVH36UWEVFH5&keywords=hyperacusis+ear+devices+reducing+sound&qid=1676141460&sprefix=hypetac%2Caps%2C213&sr=8-3#aw-udpv3-customer-reviews_feature_div

@ErikaS how did you do with the amoxicillin??