ErikaS
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ErikaS

Member, Female

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. Feb 4, 2023 at 3:08 PM

    1. ErikaS
      ErikaS
      Wishing I didnt do 2nd dex. shot. 4 days post & ears seem more sensitive to sound & T is sharper/louder.Damned if we do, damned if we don’t.
      1. Nadia231, Sammy0225 and NYCGuy like this.
      2. CRGC
        CRGC
        I remember my symptoms taking a few days to settle down after my second shot too. I wouldn’t worry too much for the time being. Sending good vibes your way!
        Jan 3, 2023
      3. ErikaS
        ErikaS
        Thank you @CRGC ! I think that was the last shot. He offered to do 3, but with not noticing any type of improvement at this point, and with sensitivity lingering longer than first, unfortunately I think this “experiment” is done.
        Jan 3, 2023
        Sammy0225 and CRGC like this.
    2. Biaxca
      Biaxca
      Hey, I have no idea how to reply to some of the messages couldn't find reply button on ur last post, I do have reactive T, which I really Hope can be helped by treatment. How long have u had T ? Any improvements for u? Do u get any treatments. I've got so many appointments booked just waiting for the holiday period to end so I can begin them
      1. NYCGuy likes this.
      2. ErikaS
        ErikaS
        @Biaxca so sorry you’re dealing with reactivity. I’ve had it just over 4 months. Cannot say I’ve had any improvement, but I am able to run to a store, drive to therapy and not deal with a permanent spike. Always seems to settle. I started some treatments & have TRT consult coming up. Really hoping the next 4 months outweigh the last 4 with improvement and healing.
        Jan 2, 2023
        SarahMLFlemmer and NYCGuy like this.
    3. ErikaS
      ErikaS
      When I match a freq. to one of my T sounds, it completely knocks out that T sound for a few secs. Only idk if it’s good to listen to 13k hz?
      1. NYCGuy likes this.
      2. View previous comments...
      3. Joe Cuber
        Joe Cuber
        Sorry to hear that @ErikaS. When I first started to listen to nature sounds, it would set off my reactivity. What I did was listen to it for about 30 minutes at a time then take a break. My T would react, but over time I found I could listen longer and longer.
        Jan 2, 2023
        Sammy0225 and ErikaS like this.
      4. Sammy0225
        Sammy0225
        @ErikaS ah I see so if the tap is making your T spike then I can see how everyday normal noise is doing the same. It definitely should get to a point where after running the tap your T will not spike anymore. Since onset you sleep with maskers? I tried the first week then I would wake up with crazy spikes so I just slept in silence my brain sadly adapted to the high screeching and I would fall asleep quickly.
        Jan 2, 2023
        Joe Cuber likes this.
      5. ErikaS
        ErikaS
        @Sammy0225 its not a horrible spike, but makes tinnitus go higher pitch/more aggravated. I still do dishes and such and when I’m doing them I don’t hear anything, it’s when I turn it off.
        I do sleep with sounds/instrumental music. May have to try silence more often.
        Jan 2, 2023
        Sammy0225 likes this.
    4. ErikaS
      ErikaS
      Even the smallest dose of Ativan(.25mg)lessens my tinnitus & reactivity.I need to find natural/safe supplements that have a similar affect.
      1. Barry098
        Barry098
        Benzos are a great solution when you feel like you've reached the point where you are about ready to step in front of a bus but just be careful with over using them! I keep a few around for emergencies but I try as much as possible to tough it out. My ears always ring louder the day after I take Xanax and Benzos don't help you confront the feelings of distress, just hide from them.
        Jan 2, 2023
      2. ErikaS
        ErikaS
        @Barry098 thanks for the advice. I have been doing the microdose of .25mg daily for about 3 months, I plan to wean off in a month or so. Thankfully I’ve never upped the dose permanently, only rarely took .5mg. I went from having silence to multi-tone reactive tinnitus, so unfortunately it completely bombarded my life.
        Jan 2, 2023
        Barry098 likes this.
      3. Barry098
        Barry098
        When things got really rough for me about a year and a half ago Xanax helped a lot with sleep. I cut .25mg tabs in half and even that small amount worked wonders. When you go to taper, try that dosage and see if it helps.
        Jan 2, 2023
        ErikaS likes this.
    5. ErikaS
      ErikaS
      Had my 2nd dex. shot today, & I had to take my Ativan 2x.This crap is so fun.I did tell the ENT to just shoot it right into the brain stem.
      1. NYCGuy likes this.
      2. just1morething
        just1morething
        I hope everything works out well for you. My dex shots were a couple years after I had the fluid and redness in my ear from the barotrauma. I don’t wish tinnitus on anyone.

        I remember how much it hurt when the ENT missed the initial injection hole and hit my eardrum with the needle. A year later at Shea they used a laser which didn’t cause pain.
        Dec 30, 2022
        ErikaS likes this.
      3. NYCGuy
        NYCGuy
        I hope it helps! all the best
        Dec 30, 2022
        ErikaS likes this.
    6. ErikaS
      ErikaS
      All I want to do is go about my day & live my life but mutli-tone reactive tinnitus is holding me in such a depressive, scared, angry state.
      1. tpj, NYCGuy, Sammy0225 and 2 others like this.
      2. View previous comments...
      3. ErikaS
        ErikaS
        @Barry098 I appreciate your insight! It is SO hard to improve/change attitude as it still very much scares me with reactivity and the potential for getting worse. And it’s just so overwhelming with multiple sounds that contain high hissing, dog whistle, electric cicada, mores code, pure tone, etc. I would do anything for 1-2 nonreactive tones.
        Jan 2, 2023
        Jackson Brady and Barry098 like this.
      4. Barry098
        Barry098
        I know the feelings you are experiencing. I’ve been caught in the spiral a few times now. The thing is…time heals. Hard to see right now because you are suffering and can’t imagine things turning around.
        Jan 3, 2023
      5. Barry098
        Barry098
        When you can let go of the fear, your brain will let go of those sounds. Very easy to say this by the way and very hard to do it…but you can do this…best advice I ever received is, “put one foot in front of the next.” You will get to a better place!
        Jan 3, 2023
    7. ErikaS
      ErikaS
      I actually kind of enjoy a random fleeting T moment. One sound that’s not reactive. Only those with multi tone reactive T could relate!
      1. NYCGuy and ZFire like this.
      2. ZFire
        ZFire
        @ErikaS Yup, those random fleeting T moments actually make my other tones (reactive ones) nearly non-existent momentarily. Doesn’t last too long though
        Dec 28, 2022
        ErikaS and NYCGuy like this.
      3. ErikaS
        ErikaS
        @ZFire yes when the fleeting T comes on in an ear all other sounds go away for that moment. Although fleeting T is louder than my T sounds, it’s a nice little break that brings consistency and non-reactivity
        Dec 28, 2022
        ZFire likes this.
    8. ErikaS
      ErikaS
      Rookie question here: is there any chance that Susan Shore’s device could help reactive multi tonal folk at all?
      1. Ngo13 and Guywithapug like this.
      2. View previous comments...
      3. Guywithapug
        Guywithapug
        @ErikaS I wish you luck with your trt endeavor. You're still early in so hopefully there will be healing and progress. Have you had an audiogram done or tried one online? For me everything is good until 4khz and then dips sharply until 8khz which I can hear, then nothing beyond 8khz.
        Dec 29, 2022
      4. ErikaS
        ErikaS
        @Guywithapug is the loss just in your affected ear from the neuroma? I have completed more than one audiogram up to 8k hz. All is within normal range, I’m at 0 up to 4k hz, then it dips a little at 6 and 8k, but it symmetrical & within normal range. Because no one would test past 8k, I did it myself at home & that’s when I discovered my right ear has notable loss around 12.5k & up compared to left.
        Dec 29, 2022
      5. Guywithapug
        Guywithapug
        @ErikaS Yeah, just the left ear, which surprisingly, can still hear fairly well given the amount of hearing loss I have in it. I sincerely hope we have hearing restoration in our lifetime because there's more to it than just the hearing deficit. Tinnitus, reactivity, hyperacusis etc are such terrible afflictions!
        Dec 29, 2022
    9. ErikaS
      ErikaS
      Entering 2023 with all middle fingers up to my reactive T! TRT eval on Feb 3rd. Grateful to be in city with a top rated TRT specialist.
      1. Lurius, NYCGuy, Christiaan and 2 others like this.
    10. ErikaS
      ErikaS
      Holidays are hard for many.Sending love & miracles to any1 suffering this condition & other chronic ailments.2023, bring us hope & relief!
    11. ErikaS
      ErikaS
      Got a dex. shot in R ear. 3.5 mos. post T from ear infection. T/reactivity in ear are louder, this is norm & should calm down in a few days.
      1. NYCGuy, Guywithapug and CRGC like this.
    12. ErikaS
      ErikaS
      One of my worse mental days. Little sleep plus fear of never improving. I know it takes time, but how do you mentally do the wait?
      1. Joe Cuber, Sammy0225, tniuf and 2 others like this.
      2. View previous comments...
      3. ErikaS
        ErikaS
        @Sammy0225 yes I think we are saying the same thing. Not only volume but a sound may be beeping like Morris code or another is like up a higher note, then down a lower note and repeating. MADDENING but if this kind of shit subsided for you I hope to God it can for me too
        Dec 21, 2022
        Sammy0225 likes this.
      4. Sammy0225
        Sammy0225
        @ErikaS it definitely is maddening I left a detailed history on your thread if you wanna give it a quick read. If mine faded so can yours (:

        Yours sound exactly like how mine was
        Dec 21, 2022
        Joe Cuber likes this.
      5. Joe Cuber
        Joe Cuber
        For me it was acceptance, accepting that it was part of me, at least for now. The Back to Silence method turned me around
        Dec 22, 2022
        Sammy0225 and ErikaS like this.
    13. ErikaS
      ErikaS
      Good ENT offering to do intra.dex.shot to R ear this Thurs to see any benefit to T/reactivity. 3.5 mo. from onset. Any1 get worse from this?
      1. just1morething, CRGC, Samy and 2 others like this.
      2. View previous comments...
      3. ErikaS
        ErikaS
        @CRGC i got the first shot in R ear. Not very painful at all. Now just dealing with the fullness, but the worst is increased T with my high hiss and tone sound. I know this is normal to happen. Did this happen to you and did it calm down in a few days?
        Dec 22, 2022
        CRGC likes this.
      4. CRGC
        CRGC
        @ErikaS Happy to hear the injection wasn't too painful! Every time I got the shot, my T increased temporarily and the tone became sharper. But that always subsided within 24-48h. I blamed it on the fact that my ear was blocked (with the liquid cortisone).
        Dec 22, 2022
        ErikaS likes this.
      5. ErikaS
        ErikaS
        @CRGC the hardest part was trying not to swallow for 20 mins! I was honest with him and said my swallow triggered 3x and I couldn’t help it lol he checked and fluid still filled the middle ear so thankfully no issue.
        It’s better/less when I am up and walking around, I tried laying down and whoa that was a no right now lol
        Dec 22, 2022
    14. ErikaS
      ErikaS
      Just discovered the ACRN general fuzz website that a member made on here, and my night/week/month has been made.
      1. Sammy0225 and ZFire like this.
      2. scotty03874
        scotty03874
        I did prp and bone marrow injections in July in Florida and it did nothing to help me at all unfortunately...
        Dec 21, 2022
      3. ErikaS
        ErikaS
        @scotty03874 im so sorry none of those helped. I know I am far out from my T starting, I kind of just did the shot to address any possible ongoing inflammation. Will see how I feel in a few days and if I want to try anymore.
        Dec 22, 2022
    15. ErikaS
      ErikaS
      Was able to be with my niece and nephew last night for 3 hours. T no different this morning than if I would have stayed home. Baby steps :)
      1. Pistolpete, CRGC, Sammy0225 and 5 others like this.
    16. ErikaS
      ErikaS
      Is there any “benefit” to ruling out difference/loss in freq. >8k? Or would it just confirm it, but nothing to be done about it or the T?
      1. NYCGuy likes this.
      2. AfroSnowman
        AfroSnowman
        It would just confirm it.
        Dec 17, 2022
      3. ErikaS
        ErikaS
        @AfroSnowman thanks. I figured as much. Wish ENTs actually gave a shit about testing above 8k, If they did it could have been caught 3 months ago at the start of it and I at least could have tried steroid shot(s) to that ear
        Dec 17, 2022
    17. ErikaS
      ErikaS
      Had some relatively “calmer” T moments today. Shocked with my lack of sleep lately. But hey I’ll take what I can get.
      1. Joe Cuber, DeanD and NYCGuy like this.
    18. ErikaS
      ErikaS
      I cannot get my sleep better/consistent.I am on 1/2 of 7.5mg Remeron, melatonin, & microdose ativan (.25mg).Not getting more than 3-4 hours.
      1. NYCGuy likes this.
      2. dennis_me
        dennis_me
        Hi @ErikaS, it will get better, the first 3-5 months I slept maybe 1-2 hours a night waking up every 20 minutes, covered in sweat, it was crazy, my anxiety was so high. Don't know how I survived haha. Just try to rest and sleep if possible. Now I just take 1mg Melatonin and I will try to come off in January, I'm sleeping 6-8 hours a night
        Dec 16, 2022
        Joe Cuber and ErikaS like this.
      3. blamingeverything
        blamingeverything
        Trazodone has been a godsend for me, but it really only started working "great" when my anxiety levels came down. It helped a lot before that too though.
        Dec 21, 2022
        ErikaS likes this.
    19. ErikaS
      ErikaS
      2nd Neurofeedback session 2day. The T protocol involves working w/slow brainwaves in many areas including calming down system hyperactivity.
      1. MindOverMatter, Leila, Ngo13 and 2 others like this.
      2. View previous comments...
      3. ErikaS
        ErikaS
        @DeanD Thank you, I hope the NM goes well for you too if you choose that! Do you have multiple tones and is the T unilateral or both ears?
        Dec 15, 2022
      4. DeanD
        DeanD
        @ErikaS - yes, similar to you (from what I have read on your posts), multiple tones - and my t is bilateral. Are all your different tones down to further acoustic setbacks, or did they all come on at once?
        Dec 16, 2022
      5. ErikaS
        ErikaS
        @DeanD I cannot say that new tones came from acoustic setbacks, I think my reactivity got a little more sensitive, however newer tones came on with 2 colds/viruses. which is interesting because first ring came on with ear infection, so sensitive to viruses after that.
        Dec 16, 2022
    20. ErikaS
      ErikaS
      Can a unilateral hearing loss/difference around 13000hz and higher trigger tinnitus/possibly be the cause of high electric hiss tinnitus?
      1. NYCGuy likes this.
      2. View previous comments...
      3. ErikaS
        ErikaS
        @Forever hopeful ugh what has the audiologist said about this to you? The loss is only in my R ear and it now makes all the sense in how T first presented and how the reactivity is mainly in R ear. I’m just SO mad this wasn’t caught at onset when I could have gotten IT shot in ear.
        Dec 11, 2022
      4. ErikaS
        ErikaS
        @Forever hopeful I am 33 and the only reason I am experiencing this in R ear was due to ear infection and ear inflammation leading up to ear infection. I am hoping given my age, and time, my brain will reorganize and things will calm down. My T is not very loud (thankfully) but it is many changing tones and high electric hiss is reactive so it still is very overwhelming and haulting my life.
        Dec 12, 2022
        Forever hopeful likes this.
      5. Forever hopeful
        Forever hopeful
        @ErikaS You have youth on your side. Hoping it improves soon.
        Dec 12, 2022
        ErikaS likes this.
    21. ErikaS
      ErikaS
      3 years of infertility & loss.We would be planning an embryo transfer if it wasn’t for T onset.Now I worry if I will ever be able to do it.
      1. View previous comments...
      2. Forever hopeful
        Forever hopeful
        @ErikaS, when they say you have no hearing loss. It just means you have no hearing loss in the ranges that are specific to speech. You may have hearing loss above that. I don’t know how old you are but it comes with age. They don’t test for it because they don’t have any benchmarking for it. So how are you score is not always that relevant if you have no reference point. It sucks either way.
        Dec 12, 2022
      3. Sammy0225
        Sammy0225
        You still have alot of time for improvement I’m hoping the best for us both
        Dec 12, 2022
        ErikaS likes this.
      4. ErikaS
        ErikaS
        Thanks @Sammy0225 , right back to you. Month 3-4 may be the worst, I am hoping for a turn around at month 5-6. Hope your little improvements you’ve seen lately continue !
        Dec 12, 2022
        Sammy0225 likes this.
    22. ErikaS
      ErikaS
      Best/most liked ear protection when driving, specifically with reactive Tinnitus. Thanks for any recommendations.
      1. Sammy0225 and NYCGuy like this.
    23. ErikaS
      ErikaS
      If you deal with reactive T/mild H w/no pain, I would appreciate any feedback in my support thread “Just How Far Can I Push Reactive T”. TY!
    24. ErikaS
      ErikaS
      Headed to my first Neurofeedback today. It is specific for tinnitus as it applies to the mind-body approach & how it’s “wired” in the brain.
      1. CRGC likes this.
      2. Leila
        Leila
        I hope it will make a difference to your tinnitus in the long run. Let us know how it goes.
        Dec 9, 2022
        ErikaS likes this.
    25. ErikaS
      ErikaS
      3 mos. since T onset, R ear is very reactive. I have ENT willing to do intratymp. dex shot. Any case known where this made it worse?
      1. View previous comments...
      2. CRGC
        CRGC
        I hope you're able to find some relief! You're still early with this, as am I. We have to remember to be patient, healing takes time.
        Dec 7, 2022
      3. ErikaS
        ErikaS
        @CRGC I know, it’s just scary when you’re taking precautions and doing things to help but it’s not getting better, just worse. When did the H start for you?
        Dec 7, 2022
        Nadia231 likes this.
      4. CRGC
        CRGC
        Mine started at the same time as the rest of my symptoms, so 6 months ago. Overall I’m a bit better than in the summer when it was at its worse, but still struggling as the pain fluctuates unpredictably. Being very careful about everything i can control, and trying to stay patient and optimistic.
        Dec 8, 2022
    26. ErikaS
      ErikaS
      The reactive electric hiss is so awful. 3 months in and I feel like it’s way more sensitive now than 1-2 months ago.
      1. View previous comments...
      2. Joe Cuber
        Joe Cuber
        Hi @ErikaS I see. For me, my reactivity on a bad day immediately picks up when I hear certain noises and gets louder and louder the longer I keep hearing those noises. When I step away, it'll either calm down or be spiked for the rest of the day. I didn't ever experience ear fullness at its peak. I only experienced ear fullness for a few days when my tinnitus started. Is the fullness bothersome?
        Dec 8, 2022
      3. ErikaS
        ErikaS
        @Joe Cuber cant tell if fullness is coming from some sinus inflammation or T sensitivity.
        What do you think helped your reactivity improve? Anything specifically?
        Dec 11, 2022
        Joe Cuber likes this.
      4. Joe Cuber
        Joe Cuber
        Hi @ErikaS - I personally think that sound enrichment at home (low, background nature sounds like rain) and going out to expose myself for short durations to parks, cafes, small downtowns. Going out sometimes made me spike, but sometimes it would settle down. Over time, it got better. I can often go out now without spiking.
        Dec 11, 2022
        ErikaS likes this.
    27. ErikaS
      ErikaS
      Does reactive tinnitus make any one else’s inner ear feel weird? It doesn’t feel full, almost that feeling you get with fleeting tinnitus
      1. Nadia231 likes this.
      2. View previous comments...
      3. ErikaS
        ErikaS
        @MindOverMatter I developed the T just over 3 months ago in R ear with ear infection. Started as high electric hiss, now 5-6 tones with reactive hiss and distortions. I know it takes time to get better, but what I do not understand is why getting worse?
        Dec 6, 2022
      4. ErikaS
        ErikaS
        @MindOverMatter i took a leave from work, do not go around very loud sounds, do not wear protection in the house and have low background sound on from something. But going in the car sends my reactivity up and recently the R ear is now “feeling” it through this sensation rather than just hearing it.
        Dec 6, 2022
      5. MindOverMatter
        MindOverMatter
        @ErikaS You seem to be doing "what you should", in my humble opinion. T winding up while in the car is, unfortunately, very common for many with different versions of sound sensitivity and reactive t. "Feeling" it, yes. I know what you mean. It will get better with time, 3 months is not a long time. There is a good chance for you to feel at least better within a time frame of 6-9 months.
        Dec 6, 2022
        Sammy0225 and ZFire like this.
    28. ErikaS
      ErikaS
      Those with reactivity: anything for sleep when ringing becomes loud when laying down, but obviously can’t drown it out? Weaning off Ativan.
      1. View previous comments...
      2. Joe Cuber
        Joe Cuber
        @ErikaS Around the house during the day, I play nature sounds from Youtube (like water fountain sounds) on my computer. For bed, I use the Resound app on my phone to play a combination of pink noise/thunder/crickets. I connect my phone to this pillow speaker https://a.co/d/j3ZWyzw, which I lay my bad ear on (my T is in my right ear, my reactivity is in both ears).
        Dec 4, 2022
      3. Strawberryblonde
        Strawberryblonde
        Hi @ErikaS took a good break from here so just saw message. My therapist pretty much said to me ditch the ear plugs and get used to normal sound again. Reactive tinnitus just happens according to him and they don't know why :/. 1)
        Jan 9, 2023
      4. Strawberryblonde
        Strawberryblonde
        2) not very helpful in my opinion my hearing therapist as they just don't know much other than sound therapy and white noise generators. Figuring it out myself, well trying too. :-( my T had been reactive this week so sleep has been limited but learning to tune it out which takes a lot of mental strength.
        Jan 9, 2023
    29. ErikaS
      ErikaS
      Love/hate how a dash of Ativan quiets the T and reactivity, even if it’s brief. How have they not figured out a safer med with same affects?
      1. View previous comments...
      2. ErikaS
        ErikaS
        @Joe Cuber yes, it definitely has an affect which is a blessing and a curse. I have been taking .25mg at night for about 2 months, going to taper soon. I have read on here that it can hold up healing. Glad I’m on such a low amount though.
        Dec 2, 2022
        Joe Cuber likes this.
      3. ErikaS
        ErikaS
        @Strawberryblonde I have been taking .25mg at night for about 2 months, going to me tapering off over the next few weeks. Doesn’t really do anything for sleep anymore.
        Dec 2, 2022
        Strawberryblonde likes this.
      4. Forever hopeful
        Forever hopeful
        Dec 11, 2022
    30. Travis Henry
      Travis Henry
      Hope u are ok. How is Neurofeedback going ?
      1. View previous comments...
      2. Travis Henry
        Travis Henry
        Got any tips kn decreasing neurological inflammation
        Dec 7, 2022
      3. ErikaS
        ErikaS
        @Travis Henry, I would look up things/supplements for nerve inflammation and mitochondrial dysfunction. I don’t have anything specific for you as it can be trial and error.
        Dec 16, 2022
      4. ErikaS
        ErikaS
        @Travis Henry I know ur against meds, but have u considered switch to Valium to wean from Clonaz. more easily, then wean from V? Also wondering if u’d benefit from nerve pain med, with how loud ur T is & if nerve inflammation based, just a thought. I know meds suck, but the goal is to get ur body/mind to come down from the “fire in the house” state, then once you get there, address weaning.
        Dec 16, 2022
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  • About

    Gender:
    Female
    Tinnitus Since:
    09/2022
    Cause of Tinnitus:
    Ear infection/Ultra High Frequency Loss in Right Ear