ErikaS

ErikaS

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Member From Pennsylvania, USA
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  • ErikaS
    Going to Cancun in 3 weeks! Ears already calmed down from my Florida trip/treatment, so I feel confident with my protection set up…
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    ErikaS
    @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.
    ErikaS
    @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..
    ErikaS
    @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.
    ErikaS
    Reactive/sound sensitive T… Did something not get damaged enough to completely shut off signal to a nerve or hair cell?
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    Ryan Scott
    @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.
    S
    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.
    Jupiterman
    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.
    SarahMLFlemmer
    Hi Erika! Can you tell me a little bit more (maybe in Laymen's terms) what procedure you're getting done in Florida and how it's supposed to help T. :)
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    Artemis2K
    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.
    Ringing_seal
    @ErikaS What is the name of the laser treatment?

    I hope the stem cells work out for you
    ErikaS
    Thank you, @Ringing_seal ! It is called LumoMed laser. Right now the only clinic in USA that has them is Advanced Rejuvenation in Sarasota.
    Artemis2K
    Hey Erika, how are you? From my own research, I have learned that IGF-1 can be extracted from PRP. This would be my preferred option since IGF-1 standalone has already been shown in publications to heal cochlear damage. It's also more potent this way. I'm also now interested in exosomes and whether or not these methods can be combined.
    ErikaS
    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?
    Artemis2K
    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.
    ErikaS
    Any theory on why some1 would acquire T sounds/noises at lower frequencies too when unilateral SSHL was only in very high frequencies?
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    S
    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?
    ErikaS
    @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.
    S
    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
    ErikaS
    Was telling a family friend about my T today. He said he got high pitch T 6ish yrs ago, & it went away in 8-12 months out of no where..
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    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.
    T
    This is interesting, how did he acquire it and how severe was it, i.e. how long did it bother him before going away?
    ErikaS
    @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.
    ErikaS
    At a quiet public pool. Ambient sounds and some children voices. Masking other T ok, can still hear/feel reactive electric hiss though.
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    ErikaS
    @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?
    ErikaS
    @AnthonyMcDonald very solid decision! Lol I hope you really enjoy it and T takes a "back seat" for the trip, you deserve it!
    Guywithapug
    @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.
    ErikaS
    Realizing if I didn't have the oscillating 12k hz & up noise that I can also feel in ears/head, I'd quickly habituate to my other sounds.
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    NYCGuy
    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.
    NYCGuy
    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.
    Sammy0225
    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
    When I protrude my jaw forward (like underbite) it cuts out one of my very high freq. electric tones…
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    Jupiterman
    @ErikaS Yes, I have multiple tones (or rather noises) and have reactivity.
    Isaac Ramsay
    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
    Gabriel
    For me it's the opposite, when I open my mouth wide it triggers my electric T, in only one ear. Totally connected
    ErikaS
    Took so long to fall asleep last night, ultra high freq. going. Came out to kitchen this AM & saw Remeron still out, didn't take b4 bed -_-
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    ErikaS
    @Strawberryblonde ugh so sorry the cold had affect! Hopefully that fades as inflammation goes down.
    S
    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.
    ErikaS
    @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.
    ErikaS
    Is there any success story on TT where someone had a ultra high pitch sound/fuzz/etc in ears & head notably lessen or go away over time?
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    A
    @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!
    A
    @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!
    A
    @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!
    ErikaS
    There are such caring, helpful souls on this forum. Appreciating them & trying to ignore others who just exhale the negativity & criticism.
    S
    The ignore button comes in handy for them lol
    Artemis2K
    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.
    ErikaS
    I am very blessed with lower volume T,but the chaotic/sound sensitive 4+ sounds that I can also feel in my ears sometimes is it's own beast.
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    ErikaS
    @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.
    ErikaS
    @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.
    A
    @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!
    ErikaS
    My T currently laying down: a swarm of lower beeps, buzz bees, & tones mixed together with random high pitch pure tones & hissing. Ugh.
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    ErikaS
    @Sammy0225 are you still mainly battling 2 tones? Or does it fluctuate and more come back and go in and out?
    Sammy0225
    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
    Sammy0225
    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 :(
    ErikaS
    I lost taste & smell from C in Dec. 20. 2 yrs later, I am 85-90% better. Nerves can calm down, the brain can improve.
    S
    Definitely!! I had covid in Sept 21' and it lost the same, it came back very slowly :)
    H
    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.
    P
    Hope this isn't weird, but how do you keep yourself looking so pretty even after tinnitus? My life has fallen apart and I can barely take care of myself let alone look pretty anymore. I hate the face in the mirror I've become.
    ErikaS
    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.
    ErikaS
    @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
    Those with SSHL.. post damage/loss, have you experienced mild shaky vision at all? Thought it was lack of sleep but reading otherwise.
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    Sammy0225
    @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?
    ErikaS
    @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.
    ErikaS
    @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
    Back because I have a med question .. I think I have sinus infection. Is doxycycline usually safe for T, or should I push for amoxicillin?
    ErikaS
    Going to be off here for a little. I am fine just need some outside focus and balance! Sending love and healing to everyone.
    ErikaS
    New day. Better mindset. Learning to navigate life in the present while trying what I can for improvement in the future.
    Sammy0225
    I wanted to ask something :) Do you own a pair of noise cancelling headphones?
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    Sammy0225
    @ErikaS I definitely always keep them close. Outside my home is always noisy stuff like ambulances passing by or loud planes passing over. But yea at the zoo and the restaurant I use my filter ear plugs. They block 20DB but also allow some noise so everything doesn't sound as muffled
    ErikaS
    @Sammy0225 so when I would wear for longer periods of time in the early months, the T sounded louder and overwhelming the longer I had them on for, so having them on longer than needed kind of created a negative mental feedback for me. Having them on never made my T "sound"lower to me, but it would be lower sounding for sure when I took them off.
    ErikaS
    @Sammy0225 then I read how N.C. headphones can actually play tricks on the brain if worn too often and make it perceive it as more present and louder, and I felt that's what I was experiencing in the beginning so I only used when absolutely needed.
    NiniBee
    @ErikaS I've been reading your posts. We are in the same boat and man, have I tried it all. I'm having success with systemic enzymes Wobenzyme, Nattokinase & Serragold. They modulate body inflammation - has brought the highest THI rating down to below a 1. I've been reading your threads - how is feedback going?
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    NiniBee
    Sound therapy was calming, polyvagul calming, CBT but nothing takes me to zero like a Medrol dose pak - so we went down the route to find root cause & treat with systemic anti-inflammatory protocols.
    ErikaS
    @NiniBee thank you for sharing all of that. How are you able to go about life now? What "caused" your T to come on? I had SSHL in very high frequencies due to ear infection in right ear…
    ErikaS
    @NiniBee I am working with a func. Med. Doc now who is trying to rebalance the body and calm inflammation so the body/brain/ears can start to aide themselves in healing. He is also doing emotional work, more and more is starting to show trauma and emotions not dealt with can hold the body in a "unwell" state. I too am not doing any caffeine or alcohol, haven't for the past 5 months.
    ErikaS
    Just feeling lost and hopeless. Damned if you do, damned if you don't. May have to take a break from here to clear my mind.
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    ErikaS
    @DeanD @Sammy0225 thank you both for your input. I have not gained a new tone in a long time. Current tones like to get sassy & change themselves some, but nothing new added. I have about 3-4 constant tones & the others that used to be constant just come in and out randomly. I also seem to reset every night in sleep, no matter if I stayed home in quiet or not. So I think Im ready to try TRT and just be mindful.
    ErikaS
    @DeanD - I know I don't know you, but you & I came on here around the same & I very closely followed your story. Please know I am so angry for you and pray for your healing & strength to endure this. You CAN get better. This CAN improve.
    ErikaS
    @DeanD Focus on success stories like @Marin, @Coffeebean, etc. Push docs to think outside the box, consider functional med doc. Marin communicated in closed caption remotely with her homeo. doc., When there's a will there's a way. I'm rooting for you!
    Samy
    Hi @ErikaS ! How are you doing? Are you still doing brain retraining?
    ErikaS
    TRT follow up today post testing. I want to believe that this could help desensitize my reactivity, but a main point holds me back..
    ErikaS
    Well hubby just tested positive for C. There goes my positive mood for the day. Let's the fucking games begin.
    Samy
    Isolate yourself from him and use masks if you dont want to get Covid. Also take some vitamins for your immune system. It happened to my husband last year and everything was ok. Good luck!
    ErikaS
    Tinnitus is a little calmer today than past two days. Mental state & mood stark improvement. We don't need AD's, we need a cure/treatment!
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    ErikaS
    @Strawberryblonde I truly believe it's on its way, just hope it's sooner rather than later. *fingers crossed*
    N
    I watched a video in 2019 from the TRI conference where Dr Shore said she thinks lots of treatments will come to fruition in the next 10 years.
    ErikaS
    @Nick47 going to really hope for a solid two (1 tinnitus direct treatment and 1 hearing loss regeneration) in the next 3-5 :)
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