ErikaS

Okay next week I’m making a status for FDA approval ! :D

@Ryan Scott She does indeed!

@ErikaS Can you ask for lots of money to come my way next week?

@ErikaS don't ask for all at once or they may unpublish the paper :)
Bless you Erika, please ask for Noxacusis treatment as well

My tinnitus is somewhere around 14,6 khz I would say although I find it really hard to match this since it's not a pure tone. I am also having hope on the dr. Shore device although this matching issue makes more worry sometimes. I hope the sound from the device has a broad bandwhith, which would solve this.

But given that my hearing stops at 16khz, and therefore cannot identify whether the sound may be above, I cannot confirm anything...

@Brambo2204 many have discussed this and we don’t believe it needs to be an exact match at all to have effect. So I wouldn’t worry too much about that. And from what I understand from trial 2, the device does output a sound that is similar to what we have, a static or high hiss. Can you modulate your T sound with jaw, facial, and/or neck/head movement?

I haven't drunk since onset, more than two years ago. I've barely let a drop of wine touch my lips once, I'm too scared of getting a spike.. I'm glad it worked out well for you !

I've begun to drink quite a lot of non-alcoholic beer lately, actually.

@Sammy0225 it makes no sense and is not fair.

@Sammy0225 whats also so frustrating is not all my tones seem to be somatic. Just the one in my my hearing loss range is, which I am grateful for because that is my most debilitating especially with reactivity. By my mid to lower frequency tones don’t seem to be somatic at all. Like wtf? How does that happen? Are all your tones somatic or just one/some?

Both you and @Sammy0225 symptoms sound exactly like mines I have all of the above and it’s scary as hell.. not sure if a few tones is somatic or coming from my neck but I notice it changes with head movement. I have like 6 or 7 tones I’ve lost count honestly and it’s severe. My TTTs, reactivity , distortions and nox is bad. I’ve lost all hope entirely.

But I didn’t want to wait around and do nothing after reading how you initially got your Tinnitus. So I’ve been prescribed some antibiotics to see if it will clear things up.

@Hardwell good job staying on top of it. Yes, especially when you already have tinnitus there's no room to let an ear infection continue. Best to get on antibiotic to clear it/the inflammation.

@ErikaS I agree we are all good people who deserve a normal life and relief.

@Nick47 Any reason to go Carbamazepine over Keppra? Lamictal and Carba. have that same rare side affect of Stevens-Johnson syndrome which I know is rare, but I can fill a handful of very rare things that have happened to me over the past year so I am trying to be as cautious as I can.

Well if I dont try I wont know. There are studies that show 50% of those that respond to lidocaine respond to Carbamazepine. I'm not worried about rare side effects I'm worried about access to a MD

Well I hope you get that access soon. I will let you know if/when I see someone about Keppra. Would love to just order the Dr. Shore device to my home at a "name your price, Susan", rather than pile on the meds, but we only have what is available to us!

Thanks so much @SarahMLFlemmer , rooting for you too girl. <3

@ErikaS I do not wear ear plugs in my house at all, I try not to over protect. I was walking like 12 miles a week but the crop dusters have been flying so much lately I haven't. Really need to start again though.

Well you are not alone, @Ryan Scott , even though I know it feels so lonely and isolating 24/7. We have to believe we will come out of this, and 1-3 years from now we will say "holy crap, that was so awful, never did I think I'd improve so much and live life again". I cry just about every day since my setback from Mexico, but each day down is one day closer to relief.

@ErikaS I've been doing a lot of crying lately again too, but I agree, each day is closer to at least habituation. <3

@Ryan Scott yep, that’s because how Lenire works. I’ll never forget them once explaining it as “instead of trying to decrease or inhibit the actual tinnitus sound, our strategy is to increase auditory input as a whole so that the brain doesn’t focus on that sound” or something along those lines. Therefore, not good for reactivity or H I would assume.

@Ryan Scott thankfully, that is NOT Susan Shore’s approach or how her device works.

@Sammy0225 thanks for that, wonder if that includes reactivity.

@Ngo13 Anything that is inflammatory with my body seems to also play off of hormones. When I had distorted taste and smell after covid, it was always worse 5 days or so leading up to my cycle. I am seeing a hormone specialist in a 2 weeks due to low progesterone and just wanting hormones to be running optimally.

@Sammy0225 , same thing with the ear muffs and tap water, they don’t do squat to prevent the reactivity.

@Sammy0225 @ZFire this is why I was never a big ear plug or muffs person after the first 3 months, spiked/reacted in some way right through them all the time and T would be louder with them in/on.

@MadeleineHope having a rough go at it honestly due to my spike since traveling and mentally crashing from that, not practicing the full hour each day yet.

@Sammy0225 I think it’s a good thing, she needs to get this device out as soon as she can. Doesn’t mean she won’t help out with research and others won’t carry on her work, but she needs to get a product to use that’s been in the making for 20 years. Research will always continue in some way, but what’s the point of continued research if it takes forever for a treatment to actually be used?

@ErikaS *hugs* Yes, spikes can be so incredibly nerve-wracking... and frustrating because we can't live in a soundproof bubble, right? And even if we could, then that in itself would cause problems. Sending positive healing thoughts your way!

@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 :(

@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.

Maybe it's like the noise amplification we experience when everything's more quiet, but maybe more intense?

@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.