ErikaS

@ErikaS Same now when the lawn crew shows up I'm like does the grass really have to grow lol. I also use to love washing my truck now it just stays dirty.

The light switch in my living room does that too my T makes it's sound like it's double the strength.

@ErikaS i know exactly what you mean about the electric component And when it’s reactive. We need a break

Thank you for checking in @hopefuldede <3 Yes they seemed to after chiropractor adjustment. Hoping they stay away.

@hopefuldede how did you mend from Covid?? I hope it didn't mess with T.

No, but interested to hear about anyone’s experience with it!

@ErikaS my hearing loss is similar to Darren but not quite as bad. My T and H were due to Acoustic Trauma. I understand that the HA does work for some people. Suggest going to an audiologist that will give you a trial period for the Oticon or Widex HA. Let me know if you would like to get connected to Darren’s audiology to help program the HA.

Thanks @Buddy123 , Darren and I have same etiology of SSHL and tinnitus with reactivity (virus in inner ear) but my hearing loss is unfortunately in higher frequencies that hearing aids don’t target. ENT still wanted me to give it a try as he says their Aud. is very good and would think out of the box. Like I said, I am taking Darren’s write up with me on how his Aud. Set up his HA.

No luck with the hearing aids. Wasn’t expecting it as my reactivity seems to be across the board frequencies and not just high.

Great! Did your vibration come with its own sound, or was it just a vibrating sensation somewhere around the eardrum?

@tniuf it was like a light motor vibration sensation with a sound in the ears, I think it was a mix of muscle spasms and obviously something out of place !

Something very similar happened to me once recently, only for an afternoon, after laying on the side with my head resting on my hand.

@BrysonKingMe I meant to ask you, that treatment you went to in South Korea for, did it cause a worsening or just not do anything?

It spiked my Tinnitus to 12/10 levels for a day and drained my bank account of $15k. Korea was cool I guess

Ugh, if only our outcome matched our efforts.

Ditto...

Same here — feels like prison

@MadeleineHope the irony is about 2-3 weeks ago or so I would think to myself “I am pretty tired at night even before the Remeron, I bet I could wean off and still sleep okay with my natural supplement line up”, so that will be my plan moving forward.

This was my timeline of med involvement: last dose of Flexeril (muscle relaxer) on 23rd after 6 days on it between 15-20mg. I stopped because it was more giving me spike, weird ear issues and not helping. Started small increase of Ativan in AM on 24th (.25mg in AM and PM instead of just .25 in PM). Vibrations laying down at night seemed to appear 3-4 days as later. Did not change Remeron.

I’ve no words of wisdom - I just really hope it subsides for you. I haven’t taken any sleep medication I’m just so afraid to.

I can definitely relate to this - coming up on 7 months here. Sending hugs back!

* virtual hugs *

I miss my life as a bustling journalist - always out for new - now fixed at home and closer environment - livin life like a senior :(

@ErikaS i think anxiety may be playing a part in this like you said. Your limbic system has had a mix of a nice holiday and then a sort of comedown from a muscle relaxer, plus the feeling of anxiety from both. Getting and allowing the body to recalibrate for a lack of a better word may get you back into a more equilibrium state.

@Strawberryblonde I think you’re right. I completed a big part of my DNRS training today, and it’s just solidifying more and more how impaired my limbic system is and how it can absolutely exacerbate all my symptoms, from the vibrations to reactivity/spiking tinnitus. I’m determined to use DNRS how Marin did and hopefully reset Limby and have more stabilized, non reactive T!

@Joe Cuber position doesn’t seem to change it much, but when I move or if any sound is on like low fan or my heater, it goes away, then as soon as I’m still and in silence, it comes on. I think my nerves are all frazzled from my actual spike/setback and then emotional/mental stresses.

@Ryan Scott you purchase it on the website .. retrainingthebrain.com

@ErikaS I looked into the Gupta programme a few months back sounds similar. I’d be interested in trying can you report back in a week or two with how you are getting on. Hugs to you!

Sort of steep price. I am always skeptical about those self-improvement programs for $$$. But maybe I should not be.

No, unfortunately I was 4 months out from onset. It was a try but no improvement.

@yeezysqueezy hoping it comes down for me as my ears calm down from spike!

Sorry to hear @Hardwell, not fun!

Can you alter yours in other ways? A quick head movement stops it very briefly and if I look to my left as far as I can that also seems to stop it for a good 20 seconds or so. I’m also finding some relief putting an ear plug in that ear, as if opening the ear canal is reducing the intensity

@Hardwell yes when I am laying down if I move my head it stops/can’t hear or feel it but as soon as I put my head down and be still it resumes.
Thanks for letting me know about the plug !

@Matchbox when I am around some ambient noise in my home (my kitchen with fridge running) I usually have 3-4 sounds, one being very high freq. which is where HL is, the others between 2-3 kHz but all can change some pitch due to reactivity.
When I’m silence, it’s like more and more sounds slowly come out and range from low to high tones and can sound like random car horns, buzzing, etc.

I literally can have two ear fulls of 4 sounds in each and it’s beyond overwhelming. I don’t know why this happens. I don’t know why my ears/brain do this. I don’t know why I can walk from one room to the next and it present in a different “mode”.

@ErikaS I miss silence. Silence now sounds like I've been hit by a flashbang.

@ErikaS @Strawberryblonde It’s interesting you mention the effects of progesterone. I got my IUD removed in early January after 6 yrs of having it, and around that time is when I noticed TTTS and H symptoms (already had T). I wonder if it’s related somehow.

I’m just so scared if the muscle relaxer is what truly spiked me to what I’m experiencing now, which it seems it was that, did it make a permanent change :( only took it for 5-6 days. And it was the one med most said improvement noted or didn’t change anything at all so I figured it was safe enough to try.

@PennyCat My T can get more sensitive/more intrusive when my cycle is coming, but nothing like what I am experiencing now. Hopefully this works it’s way out.
Women who a pre-menopause/experiencing hormone changes can experience T.

@Hardwell this is my most loathed sound. I am so sorry you are dealing with it too. If you have TinnitusPlay app, try the neuromodulation and set the frequency to something higher (12 kHz) and let the beeps play and see if that helps at all.

Tinnitus is so stupid makes zero sense. Most other conditions that aren't terminal illnesses start at the worse part then heal from there. But no not tinnitus got to be difficult.

Couldn’t have said it better myself @Ryan Scott

Thanks for the feedback!

@Jupiterman @Damocles What made me ask is the fact that when I was traveling, I was putting my earplugs in many times and making sure a good seal. on the plane, at the beach, walking around, etc. A lot more than I do at home because I limit my exposure therefore don't use them much at all. The ear buds go in a good amount, so I didn't know if that could have done it or not.

Yeah, frequent use of earplugs can push wax further down and make it (temporarily) louder.

Happens to me often, as I use my earplugs pretty much daily. Kind of just had to get used to it.

As long as it's not permanent, I've got no complaints.

Sounds like your brain is sorting this out for you, albeit slowly.

Try and think as positively as you can when your brain gets these temporary successes in fading the tinnitus. Make sure your conscious brain 'tells' your sub-conscious brain that whatever you did there was good, giving it every incentive to stay on that pathway.

@Jupiterman so slowly, and I would love to think that! I do make sure to smile when this happens to send my brain that positive response too.

@hopefuldede The two nights before though, I had to have ACRN beeps on and the wall air unit on very low because it sounded and felt like my ears were having an epileptic fit.

@ErikaS Check these out if you like: https://www.amazon.ca/Koss-KPH30ik-Headphones-Microphone-Lightweight/dp/B075FBRYM1/ref=sr_1_8?crid=9PI4E0NW06M5&keywords=koss%2Bheadphones&qid=1682145507&sprefix=koss%2Bheadp%2Caps%2C1097&sr=8-8&th=1

They're high quality & have got an open-air design.

Thank you for sharing, @MadeleineHope !

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.