ErikaS

ErikaS

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Member From Pennsylvania, USA
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  • ErikaS
    1st session of tRNS went well. I have 3 more sessions this week, last one being on Sat. I will give detailed update on Sunday in thread.
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    ErikaS
    @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.
    Gabriel
    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.
    Ryan Scott
    @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.
    eagerUser
    Hi Erika,
    Have you talked about neurofeedback with your practitioner? There is a story about someone being cured with it in the success stories. I would like to know what he thinks about it.
    I am considering it myself.
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    ErikaS
    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.
    eagerUser
    @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.
    ErikaS
    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.
    Gabriel
    Hey, I saw your post about neuromulation. I am looking at the moment about rtms,but it seems it's different ? Do you have a link or something ? I hope it works for you !
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    H
    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
    ErikaS
    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.
    Gabriel
    I hope you will have great success and will post your own success story. It all sounds very promising!
    ErikaS
    It rained last night going to bed. Reactivity yelled back at it. This is what holds me captive from living my life, f^cking reactivity.
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    Ryan Scott
    @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.
    ErikaS
    @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.
    ErikaS
    @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.
    ErikaS
    Tomorrow I finish up my brain mapping evaluation with a brainstem specialist. Yes or no that she will know who Susan Shore is?
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    Merlin L
    I need an update on this. I'm invested in the story.. pls let us know if they knew haha :)
    ErikaS
    @twa yes. I did an EEG last week and now doing some further things today before starting neuromodulation intervention, mainly different electric current stimulations
    ErikaS
    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.
    ErikaS
    Tonight calls for a glass of Merlot. What kind of wine do you all prefer?
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    Leila
    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 :)
    Tatsopa
    Nuits Saint Georges.
    Vive la Bourgogne
    makeyourownluck
    Tonic …. couldn't resist :p!
    ErikaS
    A beautiful, calm Saturday. I pray that some day I can feel the beauty and calmness again that this kind of day brings.
    Ryan Scott
    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.
    Ryan Scott
    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.
    ErikaS
    @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.
    ErikaS
    A whole crew shows up right in front of our house to dig up the road (house being built up the road). So many sounds. Instantly pissed off.
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    Ryan Scott
    Currently we are having the worse rain storm with thunder and lightning where I live. Driving me absolutely crazy.
    ErikaS
    @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.
    MadeleineHope
    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 :(
    MadeleineHope
    Hi Erika, I read in one of your posts that you're looking for possible ways to combat inflammation, & I thought you might be interested in looking into black seed oil. I just learned about & started taking this yesterday... apparently it's good for a wide variety of different issues!
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    ErikaS
    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.
    MadeleineHope
    @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.
    MadeleineHope
    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?
    ErikaS
    All my mid to lower sounds are morse code/alternating/glitching beeps, tones, or buzzes. It's chaos. Send help, Susan.
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    ErikaS
    @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.
    N
    I get the Morse code beeps sometimes
    ErikaS
    @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.
    Brambo2204
    Hi Erika, I read that you also have difficulties with matching your tinnitus. I have the same issue, with my high pitched hissing. Could you tell me how you're dealing with it? Thanks
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    Brambo2204
    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.
    Brambo2204
    But given that my hearing stops at 16khz, and therefore cannot identify whether the sound may be above, I cannot confirm anything...
    ErikaS
    @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?
    ErikaS
    I have barely drank since onset (9 months), but I decided to try some red wine tonight. And I'm glad I did lol
    Ondine
    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 !
    Lurius
    I've begun to drink quite a lot of non-alcoholic beer lately, actually.
    ErikaS
    Add "sound distortions" under sound reactive T onto the list of "things I hope the SS device can calm down"! ;(
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    ErikaS
    ErikaS
    @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?
    stacey
    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.
    ErikaS
    It sounds like electric mosquitos & low buzzing beeps in my ears along with ultra high freq. electricity, all reactive :,( Need relief.
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    H
    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.
    ErikaS
    @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.
    Ryan Scott
    @ErikaS I agree we are all good people who deserve a normal life and relief.
    N
    Hi Erika, see my post under medication.
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    ErikaS
    @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.
    N
    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
    ErikaS
    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!
    ErikaS
    As my most debilitating (but somatic) 12-15k hz sound oscillates w/intensity & reactivity, I dream about the SS device flipping it the bird.
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    Ryan Scott
    @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.
    ErikaS
    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.
    SarahMLFlemmer
    @ErikaS I've been doing a lot of crying lately again too, but I agree, each day is closer to at least habituation. <3
    ErikaS
    Would love to hear about a sound reactive T participant experience with the Shore device. There had to be some1 with R or H in the trial.
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    ErikaS
    @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.
    ErikaS
    @Ryan Scott thankfully, that is NOT Susan Shore's approach or how her device works.
    ErikaS
    @Sammy0225 thanks for that, wonder if that includes reactivity.
    ErikaS
    Ladies! Anyone experience increased auditory sensitivity or reactivity when progesterone is higher? About a week before cycle starting?
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    ErikaS
    @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.
    ZFire
    @Sammy0225 , same thing with the ear muffs and tap water, they don't do squat to prevent the reactivity.
    ErikaS
    @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.
    ErikaS
    Said I was taking a break from here & Dr.S retires & gives us a hopeful statement?! I'll announce my breaks more often! Lol
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    ErikaS
    @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.
    ErikaS
    @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?
    MadeleineHope
    @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
    Taking a break for a little to rest my mind and focus on a path forward to calming and healing. Ill be back soon. Love to you all!
    ErikaS
    never thought I'd grow such anger & intolerance for lawn mowers, weed wackers, leaf blowers, power washers. The reactivity wants none of it.
    ErikaS
    Happy Mother's Day to all the moms on here that raise children while suffering this condition. You are the definition of resilient. <3
    ErikaS
    Anyone with HL and T try Earlens? I never heard of it until my ENT brought it up. I find it interesting how it vibrates the eardrum.
    ErikaS
    ENT asked me to meet w/ H.A. specialist on Fri. Not getting any hopes up but I am going to take @Darrenb111 approach with me.
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    Buddy123
    @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.
    ErikaS
    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.
    ErikaS
    No luck with the hearing aids. Wasn't expecting it as my reactivity seems to be across the board frequencies and not just high.
    ErikaS
    No ear vibrations since yesterday afternoon following chiropractor adjustment :) Praying it stays away!
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    T
    Great! Did your vibration come with its own sound, or was it just a vibrating sensation somewhere around the eardrum?
    ErikaS
    @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 !
    T
    Something very similar happened to me once recently, only for an afternoon, after laying on the side with my head resting on my hand.
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