ErikaS

ErikaS

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Member From Pennsylvania, USA
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  • H
    hi @ErikaS you mentioned in a post a while back about taking DAO supplements. Which ones do you use and what dose? I have angry eustachian tubes (fluid build-up etc) I am going to start as best I can a low histamine diet but want to increase the DAO too. thanks so much.
    View previous comments…
    ErikaS
    @hopefuldede this is the worst "waiting" game I've ever experienced in my life, and my husband and I were actively in our 3 year infertility journey. This has completely put that on hold, along with my life as I knew it before T, and I am so angry because of it. (1/2)
    ErikaS
    I am currently on leave from work, I am a speech/language therapist in the schools. May have to take the rest of the school year off with hopes I can return in some fashion next year. How about you, are you working?
    H
    I work in healthcare communications. It certainly doesn't help any health anxieties I get working in this field. Also I think I am going to take a break from here. Although I find it super helpful, I fear I am visiting the forum and reading and focusing to much.
    ErikaS
    It is very emotionally challenging to live with someone whose auditory system is fine while trying to survive each day with this.
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    ErikaS
    @Pistolpete my sympathy goes out to you and all who have children while suffering from this crap. I can't imagine. That's why I'm going to literally throw everything at the wall (TRT, functional medicine, diet, brain retraining) and see if anything sticks before I move forward with trying to build our family.
    P
    I sometimes wonder if trying «everything» actually have made me worse. I feel as if tinnitus actually feeds on desperation, and trying so hard to get better means you monitor and focus a lot on the sounds. If only I could just accept it and try to live my life somehow with tinnitus, things might slowly get better. Easier said than done….
    ErikaS
    @Pistolpete I can understand that thought process. For me, I don't need to be "cured" with no tinnitus. My goal is to minimize reactivity and hopefully eliminate some tones. My baseline is not loud, so if I just have a couple tones stay low and not so reactive I can definitely learn to live with that. I also think in the next 1-3 years many will find relief they never could before with things coming our way.
    ErikaS
    My therapists encourage me to find outlets to let my brain calm. Ordered puzzles from Amazon, just started 1st one. Wish I did this sooner!
    ErikaS
    When I lay down in quiet to go to bed, vibration sensation/sound in R ear. Will go away with noise, & isn't there in AM. What is this? :(
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    ErikaS
    @Sammy0225 good for you! It's so hard to try to eat super healthy and prep when you are in our current mental states, so I commend you for doing so! Go the f*ck away, tones and reactivity!
    H
    Hi Erika - How are you getting on this week? We roughly have the same onset and similar type symptoms. Did you ever experience the inside of your ear being warm or hot?
    ErikaS
    Hey there @hopefuldede , thanks for checking in. I have "ok, getting by" moments surrounded by sad, scared, angry, moments. Trying not to focus on the past or predict the future, trying to focus on each day and the therapies I have in front of me this coming month (TRT, functional medicine, etc.) I have not experienced the warm/hot ear feeling. How are you doing?
    ErikaS
    Saw a functional med doc tonight. Treating viral overload & mult. cranial nerve dysfunction. Hoping he can aide my healing *prayers up*
    ErikaS
    My thoughts on intratympanic dexamethasone shot… if you are more than a month out from HL or T onset, let the ears be. Regret trying it.
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    CRGC
    I wish I could tell you what was going on with your fluctuations, but this stuff is so different from person to person. From what I've read on here, fluctuations are usually a good sign, especially if you get moments of (relative) calm. For my part the tones and reactivity started improving after 3-4 months, but slowly. Good luck with everything!
    ErikaS
    @CRGC I am into month 5, and I feel like things have only worsened tbh. Idk what I'm doing wrong, starting to think the .25mg Ativan a day may need to go (very slowly) and see if that is holding me back.
    Sammy0225
    I'm so sorry to hear this I was hoping it would help thank you for leaving a detailed note it will help someone down the line
    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.
    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!
    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.
    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.
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    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?
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    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.
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