ErikaS

Was thinking about asking how you were getting on in regards to this setback just the other day. I feel like has stabilised a little better as of now. Around the same time frame as yours

@Hardwell thanks for thinking of me! And I’m glad yours seems to be stabilizing. It’s so hard to keep rationality and logic at the forefront when we are dealing with this/these conditions because it affects our mental and emotional state so much. But the reality is the auditory system, from ear to brain, needs TIME to calm down, decrease inflammation, etc..

@Hardwell also, I’ve been forced to focus most of my attention recently on a family matter, and this truly has helped my brain not put the condition at the forefront and hyper focus on it and stew in emotions about it. My brain is learning “other things are more important” and it seems to be paying off.

Saw you posted today.

Welcome back!

@Jupiterman sorry just seeing this now. I am spending a lot less time signing in. As I do limbic system retraining, it is important like Sammy noted to stay off sites as much as possible. At this point I’m just interested in/waiting for FDA approval for the device. Other than that, have to do what I can on my own to improve!

You've signed in and posted three times in the past 10 days. You've got something to give back with your experience now. It's great your still 'checking in' every few days.

=(

This is great to hear! @ErikaS

Wow thats cool, they're in Santa Barbara, if I ever went I'd have to do at least 3 days to make it Worth it since I'm in Hollywood, how many sessions so far? It's expensive but worth it?

@in_LA I see someone local in my area who uses their neuromodulation devices and consults with them. So I can’t comment on Santa Barbara pricing and outcome, but you’d need more than 3 days.

Do you think it's related to the neuro modulation sessions you had?

@eagerUser No, I would hear this sound off and on very minimally over the past few months, its just now become more constant and audible. I think my recent bouts of anxiety and depression haven't helped.

All of the above for sure.

I feel like I’m onto an effective combo

100mg Carb (calm morse code)
4000mg Lions Mane (t, headache)
2000mg Ashwa (for anxiety)

I’ll give it another month but so far so good.

No I didn't take the 2mg of diazepam as I was not stressed by a low hiss

@Nick47 man, so your GP won’t give you a script for the Gabapentin ?! That would be insane if he/she didn’t

To only have a hiss. That’s how my T started out 10 months ago. Now I have electric reactive hiss along with 4-5 other lower level noises that are mores code and like random car beeping that get faster with noise exposure and overwhelming in quiet, it’s beyond chaotic. I didn’t have any hearing loss in the levels of the chaotic/morse code shot sounds so idk why the hell I am plagued with them.

@Ryan Scott the reactive/sound sensitive aspect of my tinnitus is what is keeping me debilitated. It has not budged since onset no matter what I did, and only worsened some after Mexico (my biggest regret yet). So I will do what I can to try to rewire this aspect to help my brain progress and heal.

Don't be hard on yourself for whatever happened in Mexico. We do stuff and regret but if you think about it you probably didn't know it would do something.

@ErikaS I know exactly what you mean, I wanted wings Friday so I had to wait for my to go order inside for like 5 minutes and regretted it. But its like we aren't trying to do anything wrong just live life, tinnitus is just so dang hard.

I hope it helps!

Wishing you the very best of luck!

I think it could help in some instances, and my current practitioner does it as well but he said based on my qEEG it’s definitely not the place to “start”, as I need a stronger intervention but doesn’t mean we will never use it. I would just say wherever you’d go make sure they have worked with a case or more that is similar to you.

@ErikaS Oh I see, I am super excited about your new treatment. I hope everything goes perfect for you. Yes, I know someone who is very knowledgeable in this field but he is not in my area.

Thank you so much @eagerUser , trying to remain neutral but I am praying with all of me that I can stabilize the reactivity and calm down my ultra high frequency oscillating tone.

Gosh you’re brave trying these things… I know you have to I understand completely. I’m over here too worried to try certain supplements. Gosh I do wish we could even get a week off every month xx best of luck mi dear

Thanks @hopefuldede !! I am almost 10 months in, and although my tinnitus is mutli sound and annoying, my debilitating factor is extreme reactivity / T winds up automatically to constant sound stimuli, thus awful to deal with going about life and always scared of a worsening. I was very fortunate to find this option locally and the cost is not bad at all.

I hope you will have great success and will post your own success story. It all sounds very promising!

@ErikaS It so hard to believe that even sounds produced my nature like rain and thunder can be hurtful to people with tinnitus, but yet they can be. It is honestly such a mind blowing condition.

@Guywithapug my reactive/wind up tinnitus is pretty consistently sensitive. It hasn’t improved really or gone down since onset 9-10 months ago. My tinnitus is low level loudness at baseline most days, but obviously sound makes it more intrusive and hectic. I don’t really have “good days” since setback in April.

@Ryan Scott all due to a very over-sensitized / hyperactive brain and neural activity. I am one to think we can calm this down and reverse it, just have to figure out how, which is why I am trying my new treatment on Monday.

I need an update on this. I’m invested in the story.. pls let us know if they knew haha :)

@twa yes. I did an EEG last week and now doing some further things today before starting neuromodulation intervention, mainly different electric current stimulations

So she did not know who Dr. Shore was (not shocked) but was very interested and took the information down to look up her latest study. This woman is more sensory motor based, but had some good input moving forward and things I can do at home to integrate while receiving the neuromodulation with electric current stimulation and other things.

I used to love a glass of dry red but it triggers my hyperacusis like crazy. Disgustingly sweet ice wine, on the other hand, is fine, so I have a glass of that when it's in season and bank account agrees :)

Nuits Saint Georges.
Vive la Bourgogne

Tonic …. couldn’t resist :P!

Same here. Just got back from the hospital had the doctor cut and drain an abscess that just decided to form in the last few months, hurt like heck. Tinnitus still way worse than that was though.

And then on top of my new doctor bill the AC unit decided to break last night. On the brightside I guess, tinnitus is still my only concern. Crazy how you don't stress about money or anything else when you have T.

@Ryan Scott oh gosh Ryan sorry to hear ! I hope you had someone help you. And yes, any temporary pain, no matter the severity, is better than this.

Currently we are having the worse rain storm with thunder and lightning where I live. Driving me absolutely crazy.

@Ryan Scott Ugh, hugs to you friend! That's when you know your tinnitus is reactive or not - rain on the roof sound. Try to go to a bathroom where it is quieter.

Ugh, I feel you! It's the bar across the street & their live music that's bugging me most! And anytime there's any maintenance in nearby apartments. Really worried about the major construction that's going to be taking place across the street in the near future too :(

I’m a lil bit late but hey ho. Happy birthday!

Happy belated :)

Happy belated birthday!!! Omg I’m sorry I’ve been absent here! But I hope your birthday was amazing @ErikaS you deserve it <3

I am trying some other intervention avenues first, but have a plan to try anti-seizure Tegretol at low dose if all else fails. Not only is this used off label for anxiety, depression, PTSD, but can help Morse code type tinnitus which is what at least 2 of my tones present as. It is also used for facial nerve pain, which I do not have but thought I’d share that with you.

@ErikaS Yes, it's really unfortunate how for many (if not most) of us, what used to be simple decisions around meds now carry so much weight.

Thanks for sharing re: Tegretol. I don't have nerve pain I can't handle at this point (& I don't think the med would actually help the nerve?), but your suggestion might just come in handy in the future.

I read that you're interested in a stimulation-type treatment... how's that been going?

P.S. I used to have Morse code type tinnitus (or at least I think I did), but I think it eventually just developed into a tone over time. Perhaps that might happen with yours too?

@Nick47 I had asked you a question but then deleted that status and wrote this one. I basically asked if you deal with sounds as I describe them above, and is it technically a form of typewriter T. My MRI and CT were clear so I don’t think compression, but man are these sounds chaotic.

I get the Morse code beeps sometimes

@Nick47 got ya. Now that I’ve realized this, I think Carbamazepine may be next on my list and I can get my psychiatrist to prescribe that, if he agrees to it due to its off label for bi polar.

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

What is this referring to?

@Nick23 The Susan Shore posted her research paper. Its in the Shore thread.

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!