ErikaS

ErikaS

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Member From Pennsylvania, USA
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  • ErikaS
    First week back to work was a success. Overall feelings of gratitude & blessings. Kids are cute, no screamers as of yet! Ears holding up.
    Cmspgran
    Congrats, how's the reactivity, still improving? You're my inspiration being a year ahead of me with exact same symptoms!
    ErikaS
    @Cmspgran my tinnitus is still sound reactive. I honestly cannot say if the reactivity has objectively lessened, but I feel like tinnitus may calm to baseline faster now. I can say that I focus way less on the reactivity now, and therefore do not fixate on its ever variable status. What seems to really upset the T enough for me to notice a significant worsening is getting sick.
    ZFire
    Hi @ErikaS :). How has your return to work been?
    View previous comments…
    ErikaS
    @ZFire Thankfully I am in a quiet part of the building and no screamers week 1! This AM they are actually pretty quiet, so cant complain. How's the sleep coming for you?
    Daphne91
    Well done girl! Huge congrats for going back to work, staying busy at work helped me massively in the first months! @ErikaS you'll see, it'll make a world of difference without you realising!
    ZFire
    @ErikaS ! That's so great to hear.. It's another positive step forward on your journey back to feeling normal again, obviously with some adjustments needed.

    I'm really happy for you :).

    My sleep has gotten a bit better. I incorporated some high-intensity cardio that seems to be making a difference. thanks for checking in :)
    SarahMLFlemmer
    How's it going?
    ErikaS
    Hey @SarahMLFlemmer ! Thanks for asking girl. I am doing well, cannot complain, honestly feelings of gratitude and blessings as I was able to get back to work this week. Ears are maintaining stability, they have their moments but my mindset is so much better. How are you doing?
    MindOverMatter
    @ErikaS How is your vibration feeling (TTTS) that you had back in October coming along? Has it lessened?
    ErikaS
    Hi @MindOverMatter ! Those have definitely improved. They appeared again during and after Covid due to inflammation and stress I believe, but I truly have found them to always subside especially with lower stress levels, not fixating on it, AND chiropractic upper neck and ear adjustments.
    MindOverMatter
    I have exactly the same experience @ErikaS I also got a new bout after covid + lots ot tension and stress/fixating on it. It was quite intense for 4-5 weeks. I've learnt that this come and go, but during times with high stress its worse.
    ErikaS
    Claritin and Zyrtec seem to spike T. Anyone have luck with Allegra? I can do Benedryl at night, need something for daytime.
    BellaMia
    I do the nose spray, no spikes so far. Nasacort I believe it's called.
    ErikaS
    Well friends, I go back to work as a school speech therapist FULL TIME March 1st.
    View previous comments…
    StoneInFocus
    Best of luck Erica, please get custom earplugs made!
    ErikaS
    @ZFire thank you for the support, well wishes, and advice! I just spoke with 2 administrative staff last week and definitely covered loud auditory events such as fire drills and even a screaming child in my room. With regards to the drills, teachers are always notified ahead of time when a drill would be, so that would allow me to exit the building before an alarm would go off...
    ErikaS
    @ZFire Thankfully, my specific elementary building hasn't even been setting off the actual fire alarm for practice drills, I think it is due to the amount of special needs children in our school that are very sensitive to things like that. So that is good! And there is a specific protocol for me to follow if a child were to uncontrollably scream in my room.
    ErikaS
    Ears were finally calming down from Covid, then caught something over a week ago, now I think its sinus infection ;( poor ears need a break!
    Joshua Macleod
    Sorry to hear it, @ErikaS. How are you keeping otherwise?
    ErikaS
    Thanks for asking @Joshua Macleod ! I just started to experience stability and some improvement 3 months ago. Unfortunately getting sick is not only a big physical trigger for me, but mental and emotional as well. I am working hard to move through these moments and to get my mind back to where it was before getting sick recently. Once I am there, I am almost certain the tinnitus will follow in a positive way.
    Andrew40
    Sorry to bother you, do you have reactive tinnitus and can you listen to something? That is, tolerance to sounds has been preserved? I have loud noise and no tolerance...
    View previous comments…
    Daphne91
    Also @ErikaS my T has a somatic element (when I tilt head back) but only for one tone that's not really the most prominent or annoying does it still classify as somatic as a whole/ can benefit from thr SS device I wonder?
    ErikaS
    @Daphne91 If you go to the Susan Shore thread and find @linearb posts, he did a great job explaining his response to treatment. He explained it as all of his tinnitus sounds lowered collectively, not just the most somatic. I truly believe it can have some effect on the nonsomatic sounds IF they too lie in the DCN.
    Daphne91
    Sounds good! @ErikaS thank you xx
    ErikaS
    Knock on wood, ears seem to starting to settle from Covid spike. About 3 weeks post testing +, almost 2 week post congestion dying down.
    View previous comments…
    ErikaS
    Thank you ladies! I will say it is still more sensitive to noise and gets rowdy which can give me frustration and anxiety, but seeming to calm down from exposures okay.
    ZFire
    Glad to hear
    ErikaS
    Thank you for your input and assurance that it should improve, @ZFire !
    ErikaS
    Just saw a headline about a musician playing guitar during his awake brain surgery, yet we still can't effectively quiet/disrupt tinnitus.
    RCP1
    Hi Erica. Do you use the general fuzz ACRN? I can't seem to get a sound out of it. Many thanks for any advice. Rob
    ErikaS
    Hey @RCP1 ! When needed, I use the TinnitusPlay app, and in that app I use the Neuromodulation option which is essentially like ACRN beeps. I prefer that over anything!
    ErikaS
    Covid gone. Now slight stuffiness, tired & spiked T & R ;( No new tones. Positive stories on T & R returning to baseline after illness, plz!
    ZFire
    @ErikaS I'm pretty sure there's a bunch of fluid in your Eustachian tubes causing the blockage and making your ears feel worse (common aftermath of an infection). The last couple of times I was sick (with Covid), my ears were so clogged I couldn't pop them. My hearing was seriously muffled, and I was worried it might be hearing loss. Plus, my tinnitus was spiking noticeably.
    ZFire
    I remember my T spiking hard when I contracted Covid the first time. Took a while to settle (almost 3 weeks). Less so, my 2nd time with Covid. All temporary in the end.

    I don't see why it wouldn't be the same for you. There's likely a bunch of congestion fluid in your ear, and once that clears up, your ears should go back to how they were before. It might take a bit of time, though – like a max of two weeks.
    ErikaS
    Started very low dose (8mg/day) of Methylprednisolone yesterday to help w/ covid sore throat & congestion…
    ErikaS
    After doing the dose today (4mg in AM and PM), the T is noticeably louder and more sensitive tonight. Could be a mix of T just naturally spiking following cold/congestion, or could be steroid. May just stop steroid and hope it calms down.
    ErikaS
    Had my best run for about 4-5 weeks, then got hit w/ COV*D yesterday ;( Like a bad cold, fever & chills today. Hoping T doesn't perm. spike!
    View previous comments…
    Daphne91
    Nothing happened to my T when I got covid, if anything it just made me focus more on those other symptoms and taking care of those. Though it does spike after every cold/congestion but goes down again, so try not to see this as a setback :) glad you've been having a good month or so!
    ErikaS
    @Daphne91 thank you for sharing. Mine has officially spiked, louder and more piercing, especially upon waking in the AM. How long does it take for yours to go down again when this happens to you when on the mend from cold/congestion?
    Daphne91
    Hii! @ErikaS sorry for the delay just saw this :) It nearly always take 10 days - 2 weeks AFTER my congestion is nearly gone. With me my ears also click when I swallow / blow my nose when I'm congested so around about the time they start acting normal, the tinnitus goes down too. It's happened time and time again but every time I get a bad headcold I get scared it won't go back down. But it always has :)
    Andrew40
    Hello, how are you feeling now, did anything help you cope with the tinnitus in both ears?
    View previous comments…
    ErikaS
    My reactive T is a direct result from ear infection going into inner ear & causing nerve damage, inflammation, & SSHL. I never had loudness hyperacusis and there was no noise trauma or noise event at onset.
    Andrew40
    If a benzodiazepine helps you, what does that mean?
    0.5 Diazepex helps me a little, and I told the doctor about this to the doctor who heads the department of "Tinnitus and Dizziness" in Moscow. I asked him, "What can this mean if Diazepam helps me?" He replied, "It calms psychosomatics."
    ErikaS
    Other members could answer your question better, but it helps release more GABA which is our calming hormone, but it can also help slow down hyperexcitability in neurons as it can be used for seizures. I also think it can help if there is nerve inflammation in the inner ear.
    ccm302
    I saw you post this "I just wanted to share with you that there are practitioners...with interventions, therapies, etc. to really help the body recover and get rid of those spiked proteins that can lead to those long haul symptoms". Regarding the interventions, therapies, etc, if you know, could you share some of the key words that I should look for that would yield a good result when searching?

    All the best,
    Chris
    View previous comments…
    ccm302
    @ErikaS No problem. Yes, I'm in the states. How did the Lidocaine go (If I read correctly)? It seems ibuprofen helps my T sometimes too.
    ErikaS
    @ccm302 I did not do the lidocaine yet, still waiting to hear from his nurse to schedule! I have called twice so I don't know what is going on.
    ErikaS
    @ccm302 So you may have to do some Googling, but there are more functional medicine doctors as well as some clinics that are doing more of those "out of the box" approaches such as nicotine, Ivermectin, etc that are getting people better. So what I would do is search in your area for functional medicine docs/clinics that specialize in long haul covid and ask questions and go from there.
    ErikaS
    I may be a rare case in this, but I swear ibuprofen actually helps my T some. Possibly confirms peripheral nerve inflammation in the ear?
    ErikaS
    Knock on wood, but had my best week in a LONG time last week. I think a couple factors go into this..
    View previous comments…
    ErikaS
    It been hell. Like the worst hell I could imagine. But, I found an amazing therapist who does intensive treatment to help me heal in all the ways I can so I can manage life and my condition better. Its not linear, nothing ever is these days, but its better than giving up.
    ZFire
    Oh…. Sorry you had to go through that. Must have been brutal. I can emphasize a lot here actually. My father also deals with Bi-polar 1 as well. His manic episodes (periods of extreme rage) especially when I was young was one of the most anxiety inducing and gut wrenching things I've ever dealt with.
    ZFire
    Those manic episodes really gives one an altered state of mind which becomes hard to control and stop. They aren't acting like their normal selves. Bi polar sucks.

    Thx for providing more clearer context. Good to hear you found someone helping you heal from all that mess.
    ErikaS
    Just had an hour and 10 minute Zoom call with the Chairman & CEO of NeuroCytonix. The best doctor call I've had in 14 months.
    View previous comments…
    DeanD
    A
    Hey just thought I'd reach out and say if I'm being totally real that it looks like a scam. There seems to be very little data on whatever this treatment is and the fact that the ceo of this alleged bio tech company has offered to pay is very dodgy indeed.
    I do hope you do get proper treatment in the near future though xxx
    Juliane
    I sure don't want to take away hope here but I agree with @ActorFred. Something sounds a bit off. Please be careful
    ErikaS
    I don't need to be cured, I just want to be able to function and enjoy life with "a little noise in my ear" that doesn't worsen with sound.
    ErikaS
    I provided a very personal and vulnerable update to my thread under "Support". <3
    Sammy0225
    @ErikaS i read your update. You truly are a warrior. We both started off around the same time here on TT. Hell I even saw your comment on one of the YouTube videos I was looking at a few months back. Keep fighting; some how we will get back some type of normality.
    ErikaS
    Literally not sure how I would have gotten to this point without you and a few others, @Sammy0225. This club we are in is quite a shit club, but some of its members have been such amazing supporters and life savers, you being one of them <3
    Juliane
    How did the Zoom conference go?
    View previous comments…
    Juliane
    Thanks a lot for sharing! Does this mean they think they will be able to perhaps treat your tinnitus?
    ErikaS
    @Juliane I am the first person to come to them with my specific condition. So, no guarantee and I have yet to hear back after they round table discuss it, but its my job to advocate for those with these awful, rare auditory conditions therefore I will discuss this with anyone who will genuinely listen.
    Juliane
    We are many who appreciate you doing that ❤️
    ErikaS
    What causes one to hear 4+ chaotic T sounds compared to only hearing one T sound?
    Juliane
    This condition is beyond sadistic. I am so sorry
    ErikaS
    I despise leaf blowers.
    View previous comments…
    ErikaS
    Update: it's coming from my R ear. One of my T sounds in that ear morphed into leaf blower sound. Why, God?
    S
    i am so sorry @ErikaS a new noise to contend with can really throw you. I sometimes get certain noises i've heard re playing in my head or ears (not sure which one is doing the playing) after hearing certain sounds, had it from an alarm a few times etc i think the mind imprints that noise and sees it as a threat and replays it like a warning sound or something like that. My theory anyway. I
    4Grace
    ❤️
    Sammy0225
    Hey my friend hope all is well. I'm using a series of white and pink noise 8hrs daily to see if it helps stabilize the reactivity. Last night it was ultra sonic pitch today it's mosquito level. I'll keep you updated
    ErikaS
    Has anyone heard about NeuroCytonix? Pretty fascinating intervention for an array of neurological disorders...
    Juliane
    Just looked it up. Sounds super interesting!
    ErikaS
    @Juliane I have a Zoom conference call with one of their top Neurologists on Tuesday. Will share what they have to say.
    Juliane
    Oh wow! Please do
    ErikaS
    A few better days after Gabapentin out of my system. To recap: Flexeril, Keppra, & GP all bad for my T. Trileptal, no real difference.
    ErikaS
    Having one of those weeks/months where I wish I could get elective CI surgery on the right ear.
    View previous comments…
    ErikaS
    SSHL in my right ear but in high frequencies, so not a true candidate at all for CI based on HL. But its been 13 months of awful reactivity and multi-sound tinnitus and ground zero is the loss in my right ear, so on my bad days I really just want to remove my right ear.
    GG_Ear
    OK that all makes sense. I've seen cases on here that improve in 2 or 3 years. So maybe you are not far off. But yes totally understandable you would opt for a cochlear implant if you could!
    sakrt
    I would think twice to jumping to invasive CI @ErikaS. i am so disaabled due to it, when one time was in exact same position, desperate as you... and it's not "elective" easy-peasy procedure either! it's known to further damage cochlea in different ways. I understand your desperation. Have you had indepth hormonal bloodwork done?
    SharonBell
    I think they should give everyone a high frequency test because my low frequency was ok but the high frequency one was very bad. I have profound hearing loss in right in and mild in left. My hairs in the cochlea are damaged. I have cochlea sensorineural tinnitus.
    J
    Did you submit your request to Biohaven?
    ErikaS
    @Justwaitinchilin Not yet, I am giving MyTomorrows a shot to be part of the "team" as we submit, but MT still has to contact my doctor's office. It's annoying honestly, but I am going to see if having them involved pushes anything further along. Probably not, but might as well try.
    J
    MyTomorrows told me they couldn't advocate for an expanded access program that wasn't already established.
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