ErikaS

When I go into my husbands office which is basically a 3 seasons room that we turned into an enclosed area (way less insulation than all other rooms) it’s like my ears turn down and T is more manageable. I also felt/heard this affect in Cancun in our hotel room.

@Jupiterman TV spikes my high electric tone(s) and music and phone aggravate all tones some, but I can handle music and phone much more than TV.

Yes. My T is happiest in the kitchen, but step 15 steps to the living room couch and it's a whole another animal. *shrugs*

Same @SarahMLFlemmer … I usually stay in my kitchen a lot

@ZFire need a clinic that can just put me to sleep for about 3 months and let my bran and body fully rest and exist outside of a constant fight or flight for once.

That’d be nice. I wish Cryosleep existed. Sleep until effective treatments come out.

I have dreamt of this scenario coming true many times @ZFire-san.

Thank you for reaching out, @MadeleineHope .. I am so sorry you find yourself here as well, I am struggling mentally a lot lately but hope I make a good medication decision to help with this while not negatively affecting my tinnitus. Are you taking anything?

@ErikaS I have not been taking anything for fear of making the tinnitus worse... I even stopped taking my daily antihistamine! But it's been incredibly challenging, I'm not going to lie. I see that your doctor agreed to prescribing the cyclobenzaprine... how are you finding it so far?

@MadeleineHope I have only taken it twice, my Doc said to give it time, about 2-3 weeks to see if it has any positive effect.

That’s amazing news Erika it seems possibly your ears are starting to show improvements If the distortions begin fading I took it as a sign that the ears are still re-calibrating. Next reactiveness should follow suit

I really hope so, @Sammy0225 .. reactivity/wind up T has been the exact same for so many months now with no improvement. Some days worse, but no progress from baseline. It’s exhausting, and my high hiss is extra hissy/electrical in R ear since getting back :( .. struggling.

This post did not age well. Distortions are pretty much back ;( can't count on anything with freaking T.

And with unilateral SSHL being my cause, not sure if/when I would be T free, however at this point I would just need my reactivity to go away and my ultra high frequency T to calm down to be able to habituate and live life again.

Well, Erika you still have a great chance to hear silence in the coming months. Remember not all with hearing loss have tinnitus. Also, Dr. Shore's promising treatment is on the way. When you reach your 2 years anniversary even if it's not gone the device will most probably be available.

About reactivity I read some success stories on this website that people could control reactivity with diet.

I’m hoping the devise is available this time next year, @eagerUser ! Too many people suffering for way too long, so much longer than I have. If something is available that shows the first sign of real promise, I hope all involved are moving as quickly as possible to get to market. I also hope they realize they literally will save lives in doing so.

You’re so sweet, thanks for checking in @Sammy0225 . How is work going for you? I’m sure first couple weeks back will be an adjustment and tiring!

Your welcome! I’m not going lie it’s hard having to focus my attention away from my t.. The last few days have been taxing like by the end of the day my brain is fried. But I knew it would be like this. I just gotta keep pushing forward we both do <3

Keep that mindset going as much as you can, @Sammy0225 ! It’s so hard especially when we become both physically and mentally exhausted. But you have seen improvement, therefore you know you can improve more. We’ve got this, friend <3

@ErikaS ugh! I know the feeling. The feeling of escapism when you’re on a break. Then the sinking dread. Be kind to yourself x

@hopefuldede Try to “ignore” it as best as I can, and I am grateful/blessed to be able to in nosier environments for the most part, but the quieter, calm moments that are needed for rest don’t allow any escape from the dreaded sounds of T.

I don’t seem to have any new tones which is a positive sign that noise is not and was never my trigger for new tones, getting sick/viruses did. So interesting because I got my tinnitus from ear infection that caused SSHL in R ear, but also gave me reactivity so you’d think prolong noise exposure would worsen? This T thing is wild.

My brother is in Mexico right now as well, visiting relatives, as we are half mexican.

Uhh. I don't remember getting an invite! ;P jk. Glad your able to relax a bit.

Hope you’re enjoying your vacation!! {;

@ErikaS That is great hope your family enjoyed vacation. Was just checking in to see if you were seeing any progress.

@Ryan Scott cannot say any consistent progress is seen at this time. I have taken quite a depression dive in the past 3 weeks, just kind of hitting my limit. Will be trying medication to help with this and hopefully not negatively affect T and R.

@ErikaS Sorry to hear that, its pretty much been the same for me. The last 3 weeks have been really hard for some reason. Haven't had the motivation to do much besides stay in bed lately and every time I want to do something I'm like jeez will this make T worse lol.

Thank you for the words @BrOKeN_1 , sometimes I just feel like I should get my brain to baseline since I went on the Ativan one month in and been on it since and I haven’t seen any progress. But definitely have to stop beating myself up when I’m just trying to survive and move toward improvement.

Dont feel bad about this. I have an RX for lorazapem(Ativan). I am 6 days almost 7 from acoustic trauma firing guns. They put me on prednisone and it’s driving my insomnia worse. The Ativan is helping to ground me for now. Follow a Doctor’s guidance.

@RingerHisser I was on 60 mg prednisone for 10 days it definitely makes sleeping harder.

So frustrating! Back when I first got tinnitus my Otoacoustic emissions showed a dip in the right ear but my left ear was the one screaming

In my case it did, luckily!

This is me. My left ear is the one with the ringing but hearing test said it was the right with the loss.

And it can't be seen heard or felt by anyone but us :(

@ErikaS. Have you tried hearing aids? They have dramatically reduced the ringing in my ears.

@Anthony2019 I have reactive tinnitus and my sudden hearing loss was at 12k hz and up in my right ear, I don’t believe hearing aids would help me.

@ErikaS That's a pretty good suprise. I've been pretty much isolated from my friends since this happened.

@Ryan Scott Have you tried a small quiet visit with/without protection? It’s very good for the mental health if you’re able to.

@SamRosemary @Strawberryblonde thank you ladies! :)

Unfortunately, I had a conversation with Dr. Minbo Shim, and he said that he tried standalone growth factors, but they didn't work well enough. Only the PRP worked. From what I read, lab grown exosomes don't have all of those growth factors. Also, PRP is supposedly to be sticky when warm, which I don't know if exosomes are.

Also, based on what I read a few months ago, growth factors also encourage differentiation and proliferation of stem cells, so it sounds to me that they must go together to maximize potential effects. This is the route I will be taking. I might also get the standard stem cell treatment from the AZ clinic as well as see if they'd be willing to talk to Dr. Shim now that I have the time to make the calls.

Very sorry you haven't had recovery yet. Very strange for some people in studies of growth factors and stem cells after a significant amount of time but very few here. Makes me wonder why.

@ErikaS my T has been sounding more like the buzzing of bees lately so I thought it was calming down but tonight my ears are legit SCREAMING.

@ZFire Lower frequency sounds like my fridge or our baseboard heating still affect how it presents but tend to drown out more, thank God. But anything higher frequency and constant, no good.

@Joe Cuber I pray with all of me that the Michigan Device can calm down reactivity!

If I had nonreactive tinnitus that bothered me, I would definitely get sound generating devices to help mask/distract me from the tinnitus. Unfortunately I have the reactive component, so I hesitated. I even asked TRT lady if we could do hearing aids and try different things with amplification or the opposite, but she didn’t feel that would fit my situation…

She thought I could tackle my reactivity and tinnitus with sound generating devices, but I was nervous with that given stories on here. Believe me, if there was something that I felt that could help me now That wasn’t stem cells and the money it cost us, I would have tried it.

@ErikaS I'm saving up our tax returns and whatever else, following testimonials here also. I'll get the money, I just want to make sure that I spend it on something that has been tried and true. I appreciate your efforts with the stem cell stuff. I'm curious to see how it turns out for you, I sure hope it helps you!!

@ErikaS Same here its like I use all my will power to try and stay optimistic ensuring myself I will live a normal life again. Then spiral down hill for a few days were T gets me super stressed and depressed. I want to be my normal self again so bad but sometimes it gets the best of me.

Same, I will have periods of good mental health, then some kind of spike will set me back. It really is a cycle.

@ErikaS It does get overwhelming for me too, it's a lot to deal with. But we're dealing with it! Two steps forward and one step back is still a step forward in the right direction!

Honestly, I’ve had some of my best days the past 3 days. Some rough/annoying moments, but overall pretty manageable. Thanks for asking. How about you?

@ErikaS good to hear. I had a good two days and back to bleh lol

@Wrfortiscue yeah, my ears got word that I was enjoying a few good days so they decided to be more testy today ;( if only progress could be linear.

@ErikaS - do you manage to do all that without ear plugs?

Yes, @DeanD … ear plugs make my tinnitus sound louder and I hear the reactivity/spike more with them in, which screws with my mental state too much. These are not every day repeated tasks though, far from it. This was a “good day” which happen randomly and rarely.

@ErikaS - weird, as mine is the total opposite. T is slightly more quieter in ear plugs than without. I need to get off them! Tough!
I'm really pleased for your good day :) - hopefully many more to come!

@Guywithapug I know I was very nervous about this. My in laws booked it months ago for all of us so I didn’t want to be “that one” to bring it up, but I did and my mother in law already checked with the resort and their transportation and it sounds like safety parameters are good.

@scotty03874 I was hesitant to put this in writing becuase I don’t want to jinx it, but if there is something that has shown a difference/change in the last 4 days, it’s my high oscillating electric hiss. Still has its moments, but it has calmed down reactive & intrusive wise. Lower tones are still there & not changed, but as we know in the cochlea, the freq. sitting first past the round window are the high ones..

@scotty03874 So WHO knows but I have noticed this while watching TV, doing daily things around the house, etc. Not celebrating it by any means at this point, the true test will be when I get my monthly cycle as the high electric hiss tends to become its worst then. But, just thought to share.

@Strawberryblonde It is pretty mind boggling how some people just heal and not others. I was perfectly healthy, took vitamins, and got on steroids within a couple days after the onset. Which nothing has seemed to help but why others just heal is a mystery.

i have known people in the past who went to loud places, gigs and used headphones and not even have a hint of T to show for it. Me i got it at 24 :( @Ryan Scott They must have some good genes or just damn lucky, us not so much.

There are people on the forum who report of reactivity improvement beyond 6 months. Sadly, frustratingly and irritatingly it's patience and time could be the best healer.

If the exosomes were lab-made, then it sounds like a similar situation with the lab-peptide version of IGF-1, so that may be encouraging for me. It all depends on what growth factors are in them and the dosage. I read online from (non-medical) websites that anything beyond 300 mcg was a risk.

@ErikaS What is the name of the laser treatment?

I hope the stem cells work out for you

Thank you, @Ringing_seal ! It is called LumoMed laser. Right now the only clinic in USA that has them is Advanced Rejuvenation in Sarasota.

Hey @Artemis2K , I’m hanging in there ! Your research sounds valid, I am just stumped on where/who you could turn to discuss the IGF-1 for intratympanic or behind the ear administration along with exosome use? Maybe Innate Healthcare?

My first contact will be Advanced Rejuvenation in Florida since they still do IT-injections. I will go through every option that's known of.

I have an oscillating morse code in my left ear. Up and down, dull and sharp sounding then it dissappears then comes back. I got no chance of matching that tone haha @ErikaS how are you holding up with all this as time is going on?

@Strawberryblonde yesterday was a quieter day, but today was one of my most intrusive days. I think the sensitivity and loudness is the aftermath of my travels as well as the interventions. I was aware things could be sensitive for a little before calming down and then hopefully improving, it’s just hard to live it and stay calm :( this ultra high T that radiates in ears and head is the worst.

Having a good days goes to show the T can do it if it pleases. It's a shame that normal life including travel tends to spike it. Take the spike away and your half way to being OK :) @ErikaS

Agree, @Jupiterman .. I just wish that spontaneous recovery was more equal across the T board, and not just seem more with those who have one or two constant sounds and no reactivity, hyperacusis, etc. Shoot if I could just get spontaneous recovery with reactivity alone I would be more than half cured.

This is interesting, how did he acquire it and how severe was it, i.e. how long did it bother him before going away?

@tniuf He has hearing aids now so I would say start of hearing loss? Because he said he got it and it was gone before he got the hearing aids. It was with him for 8-12 months and he said it was very annoying in the quiet, watching TV, and going to sleep. So his was a constant, non reactive sound. Something I so wish I could experience compared to my crap.

@Guywithapug It is AWFUL. All because I had some sudden loss at stupid high frequencies that we don’t even need for speech -_- … On those days you randomly get where you say “T and reactivity at a 1”, does this electric hiss just sound like a quieter hiss and stay quiet and less intrusive?

@AnthonyMcDonald very solid decision! Lol I hope you really enjoy it and T takes a “back seat” for the trip, you deserve it!

@ErikaS yes, like yesterday all I had was t at a solid 1 and almost no reactivity. Usually only lasts a day but I've had it last as long as 4 days in the past.

Same here, I habituate great to my T but the new T is like my high pitch electrical that now converts to a instrusive beepp, and this is new and I can get habituate but maybe I can with time.

Is crazy some people find certain T disturbing but for others they can habituate very easily, I always hear here that beep tinnitus is the most easy one to habituate but for me is the worst.

Like I mentioned in my previous post I've experienced beeps, drone humming, lights saber sound, dentist drill, eeee, wine glass humming hissing and electric zaps (zinging) . I know exactly how you feel I'm confident you can overcome this @NYCGuy we believe in you

@ErikaS Yes, I have multiple tones (or rather noises) and have reactivity.

Opposite for me, anything I do with my mouth/jaws will make it louder while I do that movement. I'm not sure my tinnitus is actually somatic caused though considering how many noise people also have that effect

For me it's the opposite, when I open my mouth wide it triggers my electric T, in only one ear. Totally connected

@Strawberryblonde ugh so sorry the cold had affect! Hopefully that fades as inflammation goes down.

God I hope so!! A cold has never been an issue with my old T level but this time it's so high pitched and felt, nearly crying with how frightened I felt with it last night.

@Strawberryblonde I know that “felt” feeling all too well. I strongly believe one being able to “feel” their T versus someone who doesn’t is a huge debilitation difference and absolutely affects habituation. Because when I have brief moments where I don’t feel it, it’s amazing.