ErikaS

@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

Update: it’s coming from my R ear. One of my T sounds in that ear morphed into leaf blower sound. Why, God?

i am so sorry @ErikaS a new noise to contend with can really throw you. I sometimes get certain noises i've heard re playing in my head or ears (not sure which one is doing the playing) after hearing certain sounds, had it from an alarm a few times etc i think the mind imprints that noise and sees it as a threat and replays it like a warning sound or something like that. My theory anyway. I

❤️

@Sammy0225 have you seen the thread from @Coffeebean ? i think thats his username? He used pink noise at a specific frequency to help him

@ErikaS the same here. Even though my T is louder than its original level, if the diplacusis/distortions/reactivity lessened or went away then i would feel 10x better than it constantly pulling the rug from underneath me.

@Strawberryblonde hello love (:
Yes I read much of @Coffeebean post. I wish he was still around to give us an update. And I agree if we can eliminate reactivity quality of life would be 80% better

Just looked it up. Sounds super interesting!

@Juliane I have a Zoom conference call with one of their top Neurologists on Tuesday. Will share what they have to say.

Oh wow! Please do

SSHL in my right ear but in high frequencies, so not a true candidate at all for CI based on HL. But its been 13 months of awful reactivity and multi-sound tinnitus and ground zero is the loss in my right ear, so on my bad days I really just want to remove my right ear.

OK that all makes sense. I've seen cases on here that improve in 2 or 3 years. So maybe you are not far off. But yes totally understandable you would opt for a cochlear implant if you could!

I would think twice to jumping to invasive CI @ErikaS. i am so disaabled due to it, when one time was in exact same position, desperate as you... and it's not "elective" easy-peasy procedure either! it's known to further damage cochlea in different ways. I understand your desperation. Have you had indepth hormonal bloodwork done?

@Justwaitinchilin Not yet, I am giving MyTomorrows a shot to be part of the "team" as we submit, but MT still has to contact my doctor's office. It's annoying honestly, but I am going to see if having them involved pushes anything further along. Probably not, but might as well try.

MyTomorrows told me they couldn’t advocate for an expanded access program that wasn’t already established.

Long, hot bath with lavender and epsom salt is the only thing that calms me besides Xanax.

I really need to get back into my epsom salt baths, @SarahMLFlemmer thanks for the reminder. Just filling the tub is aggravating to T, of course.

<3 I am so sorry I am only responding now. I don't know how I have any strength left, but I am still here. Praying for continued strength for all of us.

@ErikaS - no worries. Everyone here suffers so much but are so kind. I really do love you guys. I hear you on the strength. Last bar and flashing. :( I still keep a bit of hope.

Great news!

It definitely is Sam. I’m glad you got through the spike like you I also have a little one depending on me. Gotta stay strong for them <3 @SamRosemary

@SamRosemary @Sammy0225 I REALLY want to know the auditory system/inner ear damage/potassium ion channel function difference between those like us who hear an orchestra from hell of various kinds of sounds, and then those who just have one sound. When I wake up in the morning, its like roll call of all the sounds and its insane to me how this exists and I'm 13 months in.

@ErikaS It's the same for me, fellow Pittsburgher. My sounds each 'clock in' every morning, one by one. I get a solid 10 seconds of normalcy before that happens, during which time I envision my true self being cocooned by dark, black thorns...and then my day begins.

@dan From what I understand Doxy is more effective that Amoxicillin, but if someone absolutely cannot take Doxy, then Amoxicillin is used. But it also depends on the infection. Lyme is the main but there are many co-infections like Babesia that cause their own illnesses and symptoms.

@dan if I were you I would get comprehensive blood testing done to determine Lyme and co-infections then work with a Lyme literate doctor. Thankfully my functional medicine doctor who acts as my endocrinologist and PCP is very Lyme literate

I read stories in success stories about how many did not see/hear improvement with their tinnitus until 18 months or more. I Try to hold onto that, I just get scared when it feels like I worsen little by little. But I also have a lot of stressful situations going on in my life which I know do not help.

Yes @ErikaS , stress is a huge contributor to these issues. Talking out of own experience. I've had long spells with this. Getting out in nature (if possible), calming down in general, keep a clean diet and such, and maybe supplement with magnesium glycinate 200-500 mg a day, helps a lot.

@ErikaS interesting... I have been on remeron as well on and off since onset. I don't recall having this initially... I couldn't tell you if it's the middle ear but it does have a faint sensation to it.

@ErikaS i had exactly this!! Took months to go away. Yes it had more of a physical feeling of vibration more than a noise or sound.It slowly faded after my trip to the beach house last year. Looking back now I feel it was a form of MEM or TTTS. It activated to low bass sounds. (Cars passing outside and such) I’ll add that after a car ride it vibrated like crazy

I hope they hurry

Does anyone know when these are supposed to be coming out?

@stacey no one knows for sure but I would think access to at least one of these avenues will happen in the next 2-3 years

Hi @DebInAustralia so sorry I am only responding now! I typed a response a few days ago but guess I never hit post :)
Thank you for your sweet post. I have read about Sam's success with that and was so happy for her! I was actually on LDN for quite some during fertility treatments way before reactive T came and ruined my life...

I did try it a couple times early on in the reactive T journey, but a day or two after I started it, it sped up the sounds of my T and sounded like it was making things more hyper if that makes sense. So after a couple days of that I stopped. My origin of T was ultra high frequency SSHL from ear infection in R ear that was not treated with heavy dose steroids, so definitely nerve/cochlea damage. :(

I'm sure she is stuck in the waiting game like the rest of us.

Hang in there, sister. ❤️

@BrOKeN_1 I was on the Flexeril back in April for a little over a week, then the Keppra for 5 days.

@Strawberryblonde if you go to the Levetiracetam (Keppra) thread you’ll read my more in depth update and what I experienced there.

I know it may sound like I didn’t give the Keppra a good trial run, but I was only on 250mg 2x a day (very low dose) and it quickly was doing the opposite and more of what it positively did for others. Increased my worst tinnitus sound, increased my sound sensitive tinnitus/reactivity, and decreased my sound tolerance threshold while creating physical over stimulated sensation in ears.