ErikaS

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!

@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!

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?

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?

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!

@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.

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

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!

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 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.

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.

@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.

@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.

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.

@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.

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.

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.

I hope it helps! all the best

@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.

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.

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 Yup, those random fleeting T moments actually make my other tones (reactive ones) nearly non-existent momentarily. Doesn’t last too long though

@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 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.

@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.

@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!

@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

@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

For me it was acceptance, accepting that it was part of me, at least for now. The Back to Silence method turned me around

@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?

@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).

@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

I did prp and bone marrow injections in July in Florida and it did nothing to help me at all unfortunately...

@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.

It would just confirm it.

@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