ErikaS

ErikaS

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Member From Pennsylvania, USA
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  • 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?
    View previous comments…
    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.
    View previous comments…
    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!
    View previous comments…
    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 :)
    Ringing_seal
    Hey Erika, I read your cause of T is an ear infection. Was wondering if you ever get "nerve pains"? Like a nerve around your ear randomly causes sharp pains?
    ErikaS
    Hey @Ringing_seal , not that I can say. If I'm fighting a virus I may get a random shooting pain or itch, but outside of that not that I have noted.
    ErikaS
    TRT comprehensive testing today. It confirmed what I discovered and hypothesized MYSELF with zero help/care from ENT…
    View previous comments…
    Ken219
    ENTs must be good for something. I haven't found one.
    N
    Did you get ear pain with the infection or more just a sore throat?
    ErikaS
    @Nick47 no ear pain or sore throat. Just very full feeling in right ear. It's a very hard pill to swallow too, as the whole situation/ear infection could have been avoided. Doc denied me antibiotic a week previously.
    ErikaS
    Went to niece's small bday party. I didn't really hear T there cuz it goes to very high freq. hiss when around that kind of sound. (1/2)
    View previous comments…
    ErikaS
    @Sammy0225 thank you, as always my friend, for the input, explanation, and recommendations. So fortunate to have found people here to help guide through this. So yes, my T can "wind up" from the simplest things like having a conversation, TV on low, concentrating hard on something, etc. Sometimes my T winds up on its own for no reason then settles again with minutes.
    ErikaS
    @Sammy0225 I have my further testing for TRT tomorrow. Will be cautious with each test and I think I'm going to ask to skip LDLs. Anyway I'm hoping that whatever therapy protocol I'm recommended, if taken slowly, will really help my brain desensitize from the very sensitive winding up, reactivity, and distortions over time.
    Sammy0225
    Your welcome :)
    And yes I would definitely opt out of the LDL test like someone said why twist a broken ankle just to see how bad it hurts. All the best my friend
    ErikaS
    The things u do to try to improve fall short, but a simple cold will worsen a sound or move sounds from one ear to other in a few days. WTF.
    ErikaS
    Wish I could trade in my tones that change different notes/pitches every millisecond to just straight tone. It's like alien signals ;(
    View previous comments…
    ErikaS
    @Wrfortiscue I wonder what causes that?? It's such a mind ef. And you'd think that with time, that should calm down?? Sometimes I wonder if damaged but not dead outer hair cells that intensify sounds are misfiring, and if that's the case I want them literally killed all the way rather than half alive and causing fluctuations.
    Jupiterman
    It's time and patience we all need for resolution. Trouble is, who can endure this suffering patiently?

    I do wonder if interventions make much difference to the final outcome?

    Ears appear to do whatever they want regards tinnitus. It's as if we just need to sit by, wait and "enjoy the ride" before healing/habituation takes place?
    ErikaS
    @Jupiterman So true. It's even harder with the world around us. Cutting edge technologies, instant satisfaction and solutions for so many things, the constant go go go of society. But nothing to bring safe, long lasting relief or resolve with these conditions? Insanity.
    ErikaS
    TRT consult went very well today. Next step is further testing then thepray plan. I am going through University of Pittsburgh/UPMC (PA/USA).
    View previous comments…
    Sammy0225
    His last post was dated 1999) he ended with saying he was no longer suffering from H and his reactiveness was no longer around. He was thankful for TRT and said he was thinking about ending his life right before trying. I'm really hopeful that this will help you @ErikaS he unfortunately suffered most of the 90's and was still cured of reactiveness after TRT. So There is hope
    Sammy0225
    He states in his diary he was born in 1934, so I'm assuming he's gone by now. I'm glad he was able to recover enough to enjoy his retirement I'll leave the link below to his journal


    http://tinnguy.tripod.com/index-2.html
    ErikaS
    @Sammy0225 thank you so much for sharing all of that and taking the time to write it up. Praying and hoping this is a right path for me!
    ErikaS
    The cold caught up to me. Turned intermittent hiss into louder constant hiss. I swear a setback always has to follow a better day.
    View previous comments…
    S
    I stopped mirtazapine cold turkey many moons ago when I had my mild T and never noticed any change. Give it time for your brain to level out again, antidepressants can play havoc or they can help. You don't know till you try unfortunately. Hope you feel better soon and the hiss softens again :)
    ErikaS
    @Strawberryblonde thank you for sharing! I really do think it's the cold as I held it off pretty well but woke up this morning to much sorer throat and congestion. So maybe just inflammation driven. I have reactive T so it's always tricky to know what can cause a change!
    ZFire
    @ErikaS It is the cold and it's temporary. There's lots of congestion fluid (in your ears) that's causing this spike. Your Eustachian tubes are causing blockage making your ears feel worse. It should resolve once the cold/congestion passes.The same thing happens to me when I'm sick with cold/virus (along with many others here too). I see no reason why it shouldn't be the same case for you too.
    ErikaS
    Hubby is back from being out of town. I feel much more calm and happy, & ears were quieter. Ears are ALWAYS listening to our brain/emotions.
    ErikaS
    Been on 7.5mg Remeron for 3-4 wks. Started having inner ear vibrations at night, looked up & is a side effect. So much for that. Meds suck.
    View previous comments…
    ErikaS
    @Strawberryblonde I have not, I have some supplements from my new functional medicine doc that I hope help, I also have Magnesium Calm. Going to wean off of the Remeron and try Hydroxyzine, which I pray helps becuase it's just a strong anti-histamine, not so harsh brain chemical stuff. Goal is to be off Ativan eventually too
    Sammy0225
    @ErikaS I was put on a low dose of hydroxyzine before the onset of my tinnitus. It helped control my panic attacks but the side effects for me out numbers the benefits. It definitely mellows you out and typically hits you within 10-15min, from experience. the calming effect lasted 4hrs or so but shot my pulse rate up so i stopped taking
    ErikaS
    @Sammy0225 thank you for letting me know, I will keep that in mind as I try it. I will be taking low dose too, but if it has side affects with me then I will just do my best to go all natural.
    ErikaS
    I am finding when I am in an anxious, panic state, a glass of alka seltzer gold and a GABA Calm help calm the nervous system.
    SarahMLFlemmer
    What is GABA?
    ErikaS
    @SarahMLFlemmer GABA itself is an inhibitory neurotransmitter in the central nervous system. Its principal role is reducing neuronal excitability throughout the nervous system… copied and pasted from Google.
    GABA Calm is a supplement you can get to take. Hope that helps!
    P
    Hi, just wanted to know if you've had any success treating tinnitus with the neuro stuff
    ErikaS
    Hey there @PlaceHealth , by neuro stuff I assume you mean Neurofeedback. I just had my 6th session today. They were closed for two weeks over holiday. We first worked on increasing parasympathetic response, now working on down regulating sympathetic response.
    ErikaS
    @PlaceHealth i have two more sessions of that then it is the full on tinnitus protocol. I have not noticed a difference in tinnitus yet, however she told me we had to do this in steps and calm down fight or flight before diving into tinnitus protocol. It makes sense, but also can get frustrating as I just want to know if this will help my T at all. I will report back once I'm into the full T protocol.
    ErikaS
    @PlaceHealth i saw you inquired about sleep med. If you haven't tried already, I would try a combo of benedryl + melatonin (1-3mg) + magnesium and see if you can get any more sleep with that. Always worth it to try more natural before the heavy duty stuff. If that doesn't work, many of us find sleep help with low dose Remeron (7.5mg) you could ask your doc about that. Known to be a safer med with T.
    ErikaS
    First day of feeling like a cold coming on and T is, dare I say, exceptionally quiet. Anyone else experience this? Calm before the storm?
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    ErikaS
    Thanks @Strawberryblonde and @Jupiterman , now to find something odd to reduce reactivity; I'd consider myself more than halfway healed! :)
    Sammy0225
    Yes I definitely get this as well like body is telling me something is about to happen it's so strange
    Samy
    Probably you won't have any spike. I had 2 colds since onset and nothing changed with T. Just drink lots of water and use nasal sprays
    ErikaS
    Sleep is improving which always helps the mental state, but woke up with a cold coming on. I try so hard to not get sick as it worsens T.
    ErikaS
    Praying and hoping for everyone who feels despair and fear with this condition. In my own slump due to lack of sleep. Not coping well.
    View previous comments…
    NYCGuy
    Is so hard, habituation may start sitting with you in 6 months to 12 months, someday you will see that you don't even listen it to it during the day but at night there is no way to not hear it, is awful as always.
    ErikaS
    @Strawberryblonde thanks girly ❤️ As if this isn't hard enough, we have to deal with the normal cycle stuff that can exacerbate things. Brighter days ahead
    ErikaS
    @DeanD Ugh I'm sorry things stopped working. Have you tried melatonin + benedryl + magnesium ? That could help
    ErikaS
    What do we think the very "elite" do when they get intrusive T and/or H? Do they go behind the scenes & get treatment/care we can't yet?
    View previous comments…
    ErikaS
    I just feel like if very "important", well known people dealt with the debilitation of severe T, reactive T, hyperacusis, we would hear more about it. I would just think they would try all the TMS or stem cell type things, or, they would find a doctor willing to do something for them that hasn't been FDA approved/cleared for the masses.
    Jupiterman
    Rich people have quick and easy access to the world's best medical personnel. They are told if they notice the slightest thing wrong then to pick up the phone immediately. Early intervention gives you the best chance of preventing T/H condition worsening and to promote recovery too.
    ErikaS
    @Jupiterman and that is so so frustrating. I know the masses don't have the money they do, but for something that doesn't yet have a cure and can completely stop someone's ability to function, the absolute lack of response and help we get from ENTs etc. is awful.
    ErikaS
    Those w/ benzo experience: I have taken .25mg Ativan/day for 3.5 mos. Could even low dose be holding me back/not letting reactivity improve?
    View previous comments…
    P
    But I wonder if it's more the effect of «contrast» as however loud external sounds are you simply can't mask with evironmental sounds when T > 8 - 10 kHz. At least I can't. Are you sure it's all about reactivity and not at least partly related to it's high frequenzy? 2/2
    P
    As I've written in one of my threads my tinnitus often seems somewhat so quiet when in complete silence, but I'm often horrified how prominent it is when there's external sounds as fans, AC, traffic noise, dishwasher etc. heard. I don't think it reacts or the volume changes, but it just seems so much worse. It drives me crazy sometimes.
    P
    Anyway if Ativan helps you relax I see no harm in using it for a while longer. I can't imagine such a low dose is holding you back in terms of improving.
    ErikaS
    High hiss has become more metalic & intrusive, goes in/out in intensity w/ noise, goes from R ear to both ears then back. Not a fan :(
    View previous comments…
    ErikaS
    @Joe Cuber I hope one day your reactivity and annoying screech just disappear and never come back. Hoping for the both of us :)
    ErikaS
    @just1morething I am throwing functional/natural approaches at this with all I have first. Working with functional med doc, doing Neurofeedback, and TRT consult on 25th. I will exhaust all of those before doing any more meds. I'm already on .25mg Ativan a day and 7.5 Remeron at night. My goal is to improve to a point to wean the Ativan.
    just1morething
    @Erika, I understand. I felt great today but am very tired tonight. Meds can have their downside. They can be a bit dangerous when driving. I was on Remeron years ago but I thought I had weight gain if I remember right. Not sure of the dosage though.
    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.
    View previous comments…
    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? :(
    View previous comments…
    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.
    View previous comments…
    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.
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