ErikaS

@ErikaS They supposably don't block out all sound just enough to calm everything down I'll let you know if they help the reactivity (:

@Strawberryblonde it definitely is taxing but with practice it's possible. I unfortunately have never been able to mask my Tinnitus up until recently I slept for about 7 months with no masking my brain eventually got use to it at some point.

@ErikaS https://www.amazon.com/FLARE-AUDIO%C2%AE-Calmer%C2%AE-Translucent-sensitivities/dp/B08KHJKC4V/ref=mp_s_a_1_3?crid=3IVH36UWEVFH5&keywords=hyperacusis+ear+devices+reducing+sound&qid=1676141460&sprefix=hypetac%2Caps%2C213&sr=8-3#aw-udpv3-customer-reviews_feature_div

@ErikaS how did you do with the amoxicillin??

All the best Erika

Its the only way forward @ErikaS

Thats a good mindset Erika. im looking forward to your improvement.

“Life is very short and anxious for those who forget the past, neglect the present, and fear the future.” – Seneca

A balanced mindset helps tremendously :)

@ErikaS I definitely always keep them close. Outside my home is always noisy stuff like ambulances passing by or loud planes passing over. But yea at the zoo and the restaurant I use my filter ear plugs. They block 20DB but also allow some noise so everything doesn't sound as muffled

@Sammy0225 so when I would wear for longer periods of time in the early months, the T sounded louder and overwhelming the longer I had them on for, so having them on longer than needed kind of created a negative mental feedback for me. Having them on never made my T “sound”lower to me, but it would be lower sounding for sure when I took them off.

@Sammy0225 then I read how N.C. headphones can actually play tricks on the brain if worn too often and make it perceive it as more present and louder, and I felt that’s what I was experiencing in the beginning so I only used when absolutely needed.

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.

@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…

@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.

@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.

@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.

@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!

I've read something from one of the members on here that practices polyvagal exercises to help with tinnitus.
You may have to look more indepth about it @Samy @ErikaS .

https://www.tinnitustalk.com/threads/polyvagal-exercise-helps-bring-my-tinnitus-volume-way-down.47839/

A member of this forum practices polyvagal exercises to help tinnitus. Not sure if it'll help either of you @Samy @ErikaS

Hi @Strawberryblonde ! I already follow the youtube channel she mentions in the post and I already practice these exercises :) They do nothing for my T, but they surely help with my anxiety! I like to do them before going to sleep. I think everything that helps us to calm down is beneficial

@ErikaS https://pubmed.ncbi.nlm.nih.gov/17956776/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4461688/

https://www.sciencedirect.com/science/article/pii/S0896627319304337

I like you asked the same question. Why hasn’t constant sound improved my reactivity? I was told the brain focused on too many different sounds vs a passive sound. I just got worse lol

@Wrfortiscue The shit these tinnitus "experts" pull out of their ass baffles me.

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!

@Strawberryblonde I truly believe it’s on its way, just hope it’s sooner rather than later. *fingers crossed*

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.

@Nick47 going to really hope for a solid two (1 tinnitus direct treatment and 1 hearing loss regeneration) in the next 3-5 :)

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.

ENTs must be good for something. I haven't found one.

Did you get ear pain with the infection or more just a sore throat?

@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.

@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.

@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.

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

This is it.

@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.

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?

@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.

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

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

@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!

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 :)

@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!

@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.

@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

@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

@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.

What is GABA?

@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!

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.

@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.

@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.

Thanks @Strawberryblonde and @Jupiterman , now to find something odd to reduce reactivity; I’d consider myself more than halfway healed! :)

Yes I definitely get this as well like body is telling me something is about to happen it's so strange

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

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.

@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

@DeanD Ugh I’m sorry things stopped working. Have you tried melatonin + benedryl + magnesium ? That could help

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.

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.

@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.

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

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.

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.

@Joe Cuber I hope one day your reactivity and annoying screech just disappear and never come back. Hoping for the both of us :)

@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.

@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.

@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)

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?

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.

@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.

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….

@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.

@Lilah ironic you say that. The one I’m doing now is a jigsaw. I didn’t realize it until I put the pieces out! Up for the challenge though lol

@Ondine I sometimes use art from Magic the Gathering as my avatar actually :)

@Ondine that’s a sweet fiancé :) I will have to look into that one!