ErikaS

Hey @Zigs , I am hanging in there, I hope you are as well. Funny enough, and annoyingly enough! It came back just about three weeks ago in my left ear when I experienced a bit of a spike. It seems to already have faded away again...

However, I am pretty sure if my stress levels get really high again, lack of sleep, run down, etc. that will most likely give it room to beep up again. I have 3-4 main noises that have been with me and have never gone away, then there's some other sounds that come around during vulnerable times that seem to fade once I level out again.

Aw I’m sorry to hear it came back but glad you are hanging in there! I have reactive T too and currently dealing with a major spike or worsening so I sympathise

I know 100% where you are coming from @ErikaS - and this is "working in progress", even after 4-5 yrs with reactive t. The fear response still kick in, and it stresses me out too from time to time. But not to an extent where it dictate my life. You got this - one step at a time.

@MindOverMatter Just finished my workout and even did 8 minutes in the infrared sauna where I focused on breathing and relaxing the mind. Work in progress like you said, thank you!

100% go do it. You’ll feel better for it. You cannot live your life in constant fear of your tinnitus. It feeds it power.

If your in the gym you might make it a little more noticeable with elevated blood pressure but it’ll calm down and you’ll feel really good walking out of the gym.

Let it do it’s thing, you do yours in the meantime.

Good luck

Very somatic, can modulate it with jaw and neck movements. So, neck massages, relaxation, and mindset are top priority! Those go great with going back to work tomorrow (insert nervous face)

@ErikaS how have you been overall since returning back to work? I feel like it's good to get back out into life for the most part.

Hey @Ryan Scott I was doing quite well honestly despite work being hectic, stressful, and exhausting and then getting a bad cold two weeks in. But now I’m in a spike and it’s bothersome. Hoping I can move through this spike okay as I have to keep going to work. How are you doing?

I take .5mg of Ativan in AM and PM, and then then 3.75mg of Remeron at night. When I’m stable and doing well, I almost forget to even take my Ativan. When I’m in a spike like now, I am thankful I have it and I am someone who can take it. Depending on how I am, my goal is to wean off both Remeron and Ativan this summer, but we will see.

I'm glad for you if the pills help you. Any pills only make things worse for me. I tried a benzodiazepine but on the 3rd day the tinnitus went from the ears to the head, maybe because of the benzo(Phenazepam)
I also tried Mirtazapine 3.75, but on the 3rd day there was a strong spike A cranio-sacral therapist worked with me for the 3rd day, but it worsened again.

@ErikaS - working out is very good if it does not make you worse. I so wish I could take meds. Most of everything makes me worse. The odd Benzo spiked me a lot. Great to hear you are back to work. That’s great progress. I know it’s not easy but that’s really good news.

@Supersix yes I am, I plan to wean off it in summer time when I’m off from work.

@ErikaS
I asked my psych what he would recommend for taper after 2-3 months. He said at 15 mg, you would cut it in half, take it for three days, and then stop. I expected at a higher dose, it would be longer. I take 3.5- to 4mg, like you. He wouldn't tell me at 4mg he used 15mg as an example.

Hey @Supersix, the mg amount you and I take is so small that I believe my psychiatrist told me he would do like an every other for a week then wean completely. I told him I want to wean slowly off of anything, and he understood.

I have been dealing with ear infections my whole life. It's not fun when you get Otitis Media and experience fluid buildup. With T, it's even worse. It's a significant spike for me.

@ccm302 I only did one round and honestly it temporarily aggravated/exacerbated my T. The nerves even inside my ear canal are on high alert, so the actual puncture of the shot in the ear canal alone I think did more aggravation than any relief the lidocaine would have given me. If you go to the tread I explain more in detail!

Congrats, how’s the reactivity, still improving? You’re my inspiration being a year ahead of me with exact same symptoms!

@Cmspgran my tinnitus is still sound reactive. I honestly cannot say if the reactivity has objectively lessened, but I feel like tinnitus may calm to baseline faster now. I can say that I focus way less on the reactivity now, and therefore do not fixate on its ever variable status. What seems to really upset the T enough for me to notice a significant worsening is getting sick.

@ZFire Thankfully I am in a quiet part of the building and no screamers week 1! This AM they are actually pretty quiet, so cant complain. How's the sleep coming for you?

Well done girl! Huge congrats for going back to work, staying busy at work helped me massively in the first months! @ErikaS you’ll see, it’ll make a world of difference without you realising!

@ErikaS ! That’s so great to hear.. It’s another positive step forward on your journey back to feeling normal again, obviously with some adjustments needed.

I’m really happy for you :).

My sleep has gotten a bit better. I incorporated some high-intensity cardio that seems to be making a difference. thanks for checking in :)

Hey @SarahMLFlemmer ! Thanks for asking girl. I am doing well, cannot complain, honestly feelings of gratitude and blessings as I was able to get back to work this week. Ears are maintaining stability, they have their moments but my mindset is so much better. How are you doing?

Hi @MindOverMatter ! Those have definitely improved. They appeared again during and after Covid due to inflammation and stress I believe, but I truly have found them to always subside especially with lower stress levels, not fixating on it, AND chiropractic upper neck and ear adjustments.

I have exactly the same experience @ErikaS I also got a new bout after covid + lots ot tension and stress/fixating on it. It was quite intense for 4-5 weeks. I've learnt that this come and go, but during times with high stress its worse.

I do the nose spray, no spikes so far. Nasacort I believe it's called.

Best of luck Erica, please get custom earplugs made!

@ZFire thank you for the support, well wishes, and advice! I just spoke with 2 administrative staff last week and definitely covered loud auditory events such as fire drills and even a screaming child in my room. With regards to the drills, teachers are always notified ahead of time when a drill would be, so that would allow me to exit the building before an alarm would go off...

@ZFire Thankfully, my specific elementary building hasn't even been setting off the actual fire alarm for practice drills, I think it is due to the amount of special needs children in our school that are very sensitive to things like that. So that is good! And there is a specific protocol for me to follow if a child were to uncontrollably scream in my room.

Sorry to hear it, @ErikaS. How are you keeping otherwise?

Thanks for asking @Joshua Macleod ! I just started to experience stability and some improvement 3 months ago. Unfortunately getting sick is not only a big physical trigger for me, but mental and emotional as well. I am working hard to move through these moments and to get my mind back to where it was before getting sick recently. Once I am there, I am almost certain the tinnitus will follow in a positive way.

Also @ErikaS my T has a somatic element (when I tilt head back) but only for one tone that’s not really the most prominent or annoying does it still classify as somatic as a whole/ can benefit from thr SS device I wonder?

@Daphne91 If you go to the Susan Shore thread and find @linearb posts, he did a great job explaining his response to treatment. He explained it as all of his tinnitus sounds lowered collectively, not just the most somatic. I truly believe it can have some effect on the nonsomatic sounds IF they too lie in the DCN.

Sounds good! @ErikaS thank you xx

Thank you ladies! I will say it is still more sensitive to noise and gets rowdy which can give me frustration and anxiety, but seeming to calm down from exposures okay.

Glad to hear

Thank you for your input and assurance that it should improve, @ZFire !

Even things like hairloss are more responsive to treatment

Hearing loss, tinnitus, eustachian dysfunction, etc. There seems to be nothing for the ear like. terrible.

Say what?

Hey @RCP1 ! When needed, I use the TinnitusPlay app, and in that app I use the Neuromodulation option which is essentially like ACRN beeps. I prefer that over anything!

@ErikaS I'm pretty sure there's a bunch of fluid in your Eustachian tubes causing the blockage and making your ears feel worse (common aftermath of an infection). The last couple of times I was sick (with Covid), my ears were so clogged I couldn't pop them. My hearing was seriously muffled, and I was worried it might be hearing loss. Plus, my tinnitus was spiking noticeably.

I remember my T spiking hard when I contracted Covid the first time. Took a while to settle (almost 3 weeks). Less so, my 2nd time with Covid. All temporary in the end.

I don't see why it wouldn't be the same for you. There's likely a bunch of congestion fluid in your ear, and once that clears up, your ears should go back to how they were before. It might take a bit of time, though – like a max of two weeks.

After doing the dose today (4mg in AM and PM), the T is noticeably louder and more sensitive tonight. Could be a mix of T just naturally spiking following cold/congestion, or could be steroid. May just stop steroid and hope it calms down.

Nothing happened to my T when I got covid, if anything it just made me focus more on those other symptoms and taking care of those. Though it does spike after every cold/congestion but goes down again, so try not to see this as a setback :) glad you’ve been having a good month or so!

@Daphne91 thank you for sharing. Mine has officially spiked, louder and more piercing, especially upon waking in the AM. How long does it take for yours to go down again when this happens to you when on the mend from cold/congestion?

Hii! @ErikaS sorry for the delay just saw this :) It nearly always take 10 days - 2 weeks AFTER my congestion is nearly gone. With me my ears also click when I swallow / blow my nose when I'm congested so around about the time they start acting normal, the tinnitus goes down too. It's happened time and time again but every time I get a bad headcold I get scared it won't go back down. But it always has :)

My reactive T is a direct result from ear infection going into inner ear & causing nerve damage, inflammation, & SSHL. I never had loudness hyperacusis and there was no noise trauma or noise event at onset.

If a benzodiazepine helps you, what does that mean?
0.5 Diazepex helps me a little, and I told the doctor about this to the doctor who heads the department of “Tinnitus and Dizziness” in Moscow. I asked him, “What can this mean if Diazepam helps me?” He replied, “It calms psychosomatics.”

Other members could answer your question better, but it helps release more GABA which is our calming hormone, but it can also help slow down hyperexcitability in neurons as it can be used for seizures. I also think it can help if there is nerve inflammation in the inner ear.

@ErikaS No problem. Yes, I'm in the states. How did the Lidocaine go (If I read correctly)? It seems ibuprofen helps my T sometimes too.

@ccm302 I did not do the lidocaine yet, still waiting to hear from his nurse to schedule! I have called twice so I don't know what is going on.

@ccm302 So you may have to do some Googling, but there are more functional medicine doctors as well as some clinics that are doing more of those "out of the box" approaches such as nicotine, Ivermectin, etc that are getting people better. So what I would do is search in your area for functional medicine docs/clinics that specialize in long haul covid and ask questions and go from there.

It been hell. Like the worst hell I could imagine. But, I found an amazing therapist who does intensive treatment to help me heal in all the ways I can so I can manage life and my condition better. Its not linear, nothing ever is these days, but its better than giving up.

Oh…. Sorry you had to go through that. Must have been brutal. I can emphasize a lot here actually. My father also deals with Bi-polar 1 as well. His manic episodes (periods of extreme rage) especially when I was young was one of the most anxiety inducing and gut wrenching things I’ve ever dealt with.

Those manic episodes really gives one an altered state of mind which becomes hard to control and stop. They aren’t acting like their normal selves. Bi polar sucks.

Thx for providing more clearer context. Good to hear you found someone helping you heal from all that mess.

@ErikaS - thanks!

Hey just thought I’d reach out and say if I’m being totally real that it looks like a scam. There seems to be very little data on whatever this treatment is and the fact that the ceo of this alleged bio tech company has offered to pay is very dodgy indeed.
I do hope you do get proper treatment in the near future though xxx

I sure don't want to take away hope here but I agree with @ActorFred. Something sounds a bit off. Please be careful

Same!

@ErikaS i read your update. You truly are a warrior. We both started off around the same time here on TT. Hell I even saw your comment on one of the YouTube videos I was looking at a few months back. Keep fighting; some how we will get back some type of normality.

Literally not sure how I would have gotten to this point without you and a few others, @Sammy0225. This club we are in is quite a shit club, but some of its members have been such amazing supporters and life savers, you being one of them <3

Thanks a lot for sharing! Does this mean they think they will be able to perhaps treat your tinnitus?

@Juliane I am the first person to come to them with my specific condition. So, no guarantee and I have yet to hear back after they round table discuss it, but its my job to advocate for those with these awful, rare auditory conditions therefore I will discuss this with anyone who will genuinely listen.

We are many who appreciate you doing that ❤️

This condition is beyond sadistic. I am so sorry