ErikaS

ErikaS

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Member From Pennsylvania, USA
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  • 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
    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.
    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?
    View previous comments…
    ErikaS
    @Sammy0225 Yes running the tap does drown it out, but then when I turn it off it's waiting for me a little louder. I have been doing sounds all along, last night I actually slept with no sounds and laid in silence this AM, wondering if I could get more out of more quiet moments rather than sound all the time?
    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.
    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.
    ErikaS
    Even the smallest dose of Ativan(.25mg)lessens my tinnitus & reactivity.I need to find natural/safe supplements that have a similar affect.
    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.
    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.
    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.
    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.
    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.
    NYCGuy
    I hope it helps! all the best
    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.
    View previous comments…
    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.
    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.
    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!
    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!
    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
    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
    ErikaS
    Rookie question here: is there any chance that Susan Shore's device could help reactive multi tonal folk at all?
    View previous comments…
    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.
    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.
    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!
    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.
    ErikaS
    Holidays are hard for many.Sending love & miracles to any1 suffering this condition & other chronic ailments.2023, bring us hope & relief!
    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.
    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?
    View previous comments…
    Sammy0225
    @ErikaS sorry hope that makes sense lol but it's why I could never habuitate to the tones because they would never stay at a constant volume. Fluctuating tinnitus is a beast
    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
    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
    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?
    View previous comments…
    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?
    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).
    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
    ErikaS
    Just discovered the ACRN general fuzz website that a member made on here, and my night/week/month has been made.
    scotty03874
    I did prp and bone marrow injections in July in Florida and it did nothing to help me at all unfortunately...
    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.
    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 :)
    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?
    AfroSnowman
    It would just confirm it.
    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
    ErikaS
    Had some relatively "calmer" T moments today. Shocked with my lack of sleep lately. But hey I'll take what I can get.
    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.
    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
    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.
    ErikaS
    2nd Neurofeedback session 2day. The T protocol involves working w/slow brainwaves in many areas including calming down system hyperactivity.
    View previous comments…
    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?
    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?
    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.
    ErikaS
    Can a unilateral hearing loss/difference around 13000hz and higher trigger tinnitus/possibly be the cause of high electric hiss tinnitus?
    View previous comments…
    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.
    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.
    Forever hopeful
    @ErikaS You have youth on your side. Hoping it improves soon.
    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.
    View previous comments…
    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.
    Sammy0225
    You still have alot of time for improvement I'm hoping the best for us both
    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 !
    ErikaS
    Best/most liked ear protection when driving, specifically with reactive Tinnitus. Thanks for any recommendations.
    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!
    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.
    Leila
    I hope it will make a difference to your tinnitus in the long run. Let us know how it goes.
    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?
    View previous comments…
    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.
    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?
    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.
    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.
    View previous comments…
    ErikaS
    @Guywithapug didn't know an ear infection could cause this much chaos. No hearing loss.
    ErikaS
    @Joe Cuber thanks Joe. So my T is so weird. Any louder or constant noise makes it go higher in frequency and that electric hiss gets aggravated. But yes, running water, car rides, things like that send it higher frequencies. Doesn't necessarily get louder in that moment, just high freq. but once I go into quieter, it's louder. Did you ever experience an ear fullness feeling at its peak?
    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?
    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
    View previous comments…
    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?
    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.
    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.
    ErikaS
    Those with reactivity: anything for sleep when ringing becomes loud when laying down, but obviously can't drown it out? Weaning off Ativan.
    View previous comments…
    ErikaS
    @Joe Cuber thanks for your reply. Mine reacts to anything in the house that's a constant hum, the worst being higher frequency sounds. Thankfully my heater sounds lower in frequency, but it still reacts. For your ambient noises, did you use sounds from your phone when going to bed and in the house?
    S
    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)
    S
    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.
    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?
    View previous comments…
    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.
    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.
    Forever hopeful
    Travis Henry
    Hope u are ok. How is Neurofeedback going ?
    View previous comments…
    Travis Henry
    Got any tips kn decreasing neurological inflammation
    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.
    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.
    ErikaS
    I am praying that next week is the start of brain and body healing, as well as a decrease in tinnitus.
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