ErikaS

ErikaS

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Member From Pennsylvania, USA
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  • eagerUser
    Hi Erika,
    You are still in the early days. I do hope everything improves for you and you are once again T free before any real treatments/cure come.
    View previous comments…
    ErikaS
    And with unilateral SSHL being my cause, not sure if/when I would be T free, however at this point I would just need my reactivity to go away and my ultra high frequency T to calm down to be able to habituate and live life again.
    eagerUser
    Well, Erika you still have a great chance to hear silence in the coming months. Remember not all with hearing loss have tinnitus. Also, Dr. Shore's promising treatment is on the way. When you reach your 2 years anniversary even if it's not gone the device will most probably be available.

    About reactivity I read some success stories on this website that people could control reactivity with diet.
    ErikaS
    I'm hoping the devise is available this time next year, @eagerUser ! Too many people suffering for way too long, so much longer than I have. If something is available that shows the first sign of real promise, I hope all involved are moving as quickly as possible to get to market. I also hope they realize they literally will save lives in doing so.
    ErikaS
    All I want to do is sit and watch TV without the reactive electric crap/tones turning up in my ears.
    View previous comments…
    ErikaS
    You're so sweet, thanks for checking in @Sammy0225 . How is work going for you? I'm sure first couple weeks back will be an adjustment and tiring!
    Sammy0225
    Your welcome! I'm not going lie it's hard having to focus my attention away from my t.. The last few days have been taxing like by the end of the day my brain is fried. But I knew it would be like this. I just gotta keep pushing forward we both do <3
    ErikaS
    Keep that mindset going as much as you can, @Sammy0225 ! It's so hard especially when we become both physically and mentally exhausted. But you have seen improvement, therefore you know you can improve more. We've got this, friend <3
    ErikaS
    Almost home from our trip away. T is a bit irritated, need quiet but not looking forward to hard reality.
    H
    @ErikaS ugh! I know the feeling. The feeling of escapism when you're on a break. Then the sinking dread. Be kind to yourself x
    ErikaS
    @hopefuldede Try to "ignore" it as best as I can, and I am grateful/blessed to be able to in nosier environments for the most part, but the quieter, calm moments that are needed for rest don't allow any escape from the dreaded sounds of T.
    ErikaS
    I don't seem to have any new tones which is a positive sign that noise is not and was never my trigger for new tones, getting sick/viruses did. So interesting because I got my tinnitus from ear infection that caused SSHL in R ear, but also gave me reactivity so you'd think prolong noise exposure would worsen? This T thing is wild.
    ErikaS
    Hi all, day 5 in Cancun! Ears are much more tolerable here than home & I have been around so much more sound. Wearing protection off and on.
    Lurius
    My brother is in Mexico right now as well, visiting relatives, as we are half mexican.
    BrOKeN_1
    Uhh. I don't remember getting an invite! ;P jk. Glad your able to relax a bit.
    Sammy0225
    Hope you're enjoying your vacation!! {;
    Ryan Scott
    Have you noticed any improvements yet from your treatments Erika?
    View previous comments…
    Ryan Scott
    @ErikaS That is great hope your family enjoyed vacation. Was just checking in to see if you were seeing any progress.
    ErikaS
    @Ryan Scott cannot say any consistent progress is seen at this time. I have taken quite a depression dive in the past 3 weeks, just kind of hitting my limit. Will be trying medication to help with this and hopefully not negatively affect T and R.
    Ryan Scott
    @ErikaS Sorry to hear that, its pretty much been the same for me. The last 3 weeks have been really hard for some reason. Haven't had the motivation to do much besides stay in bed lately and every time I want to do something I'm like jeez will this make T worse lol.
    ErikaS
    Thoughts plz.. Could .25mg of Ativan/daily not allow reactivity/overall improvement? I didn't think at low dose but maybe wrong.
    View previous comments…
    ErikaS
    Thank you for the words @BrOKeN_1 , sometimes I just feel like I should get my brain to baseline since I went on the Ativan one month in and been on it since and I haven't seen any progress. But definitely have to stop beating myself up when I'm just trying to survive and move toward improvement.
    RingerHisser
    Dont feel bad about this. I have an RX for lorazapem(Ativan). I am 6 days almost 7 from acoustic trauma firing guns. They put me on prednisone and it's driving my insomnia worse. The Ativan is helping to ground me for now. Follow a Doctor's guidance.
    Ryan Scott
    @RingerHisser I was on 60 mg prednisone for 10 days it definitely makes sleeping harder.
    ErikaS
    I wish unilateral sudden loss equaled unilateral tinnitus. My left ear has no damage, yet it has the loudest tone and has up to 3 tones.
    yeezysqueezy
    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
    Guywithapug
    In my case it did, luckily!
    RingerHisser
    This is me. My left ear is the one with the ringing but hearing test said it was the right with the loss.
    ErikaS
    Tinnitus: A condition in which a thousand and one things can make it instantly worse, but not one thing makes it instantly better.
    ErikaS
    Two of my BFs from out of town surprised me with a weekend visit. Yesterday was the 1st day in so long that I didn't let T take priority..
    ErikaS
    6 1/2 months in and rain on my rooftop still aggravates my reactivity at 12k hz and up the same as it did 2-3 months in. Ugh ;(
    View previous comments…
    Artemis2K
    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.
    Artemis2K
    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.
    Artemis2K
    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
    If my ears can hear it, my T sounds will most likely change/react to it. Anyone else relate?
    View previous comments…
    SarahMLFlemmer
    @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.
    ErikaS
    @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.
    ErikaS
    @Joe Cuber I pray with all of me that the Michigan Device can calm down reactivity!
    SarahMLFlemmer
    How are you today?
    View previous comments…
    ErikaS
    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…
    ErikaS
    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.
    SarahMLFlemmer
    @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
    I will have 1-3 ok days where I push positivity, become hopeful, then mentally crash the following 1-3 days. This is so mentally taxing :'(
    View previous comments…
    Ryan Scott
    @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.
    Isaac Ramsay
    Same, I will have periods of good mental health, then some kind of spike will set me back. It really is a cycle.
    SarahMLFlemmer
    @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!
    Wrfortiscue
    How are you doing
    ErikaS
    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?
    Wrfortiscue
    @ErikaS good to hear. I had a good two days and back to bleh lol
    ErikaS
    @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
    Did laundry, went to grocery store & Target, walked the pup, cleaned the shower, bathed the pup, now watching some TV. T did not win today!
    View previous comments…
    DeanD
    @ErikaS - do you manage to do all that without ear plugs?
    ErikaS
    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.
    DeanD
    @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!
    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…
    View previous comments…
    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?
    View previous comments…
    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. :)
    View previous comments…
    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?
    View previous comments…
    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..
    View previous comments…
    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.
    View previous comments…
    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.
    View previous comments…
    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…
    View previous comments…
    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 -_-
    View previous comments…
    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?
    View previous comments…
    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.
    View previous comments…
    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!
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