ErikaS
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Gender:
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Location:
Pennsylvania, USA

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ErikaS

Member, Female, from Pennsylvania, USA

Got back from short travel this past Thursday, foam plugs w/ pelators on planes. Still spiked. I seem to enter spike 4-5 days post event. Jul 22, 2024 at 3:48 PM

    1. ErikaS
      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.
      1. View previous comments...
      2. DeanD
        DeanD
        Nov 17, 2023
      3. ActorFred
        ActorFred
        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
        Nov 27, 2023
        Juliane likes this.
      4. Juliane
        Juliane
        I sure don't want to take away hope here but I agree with @ActorFred. Something sounds a bit off. Please be careful
        Dec 14, 2023
    2. ErikaS
      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.
      1. ZFire, Juliane, SamRosemary and 9 others like this.
      2. Juliane
        Juliane
        Same!
        Dec 14, 2023
    3. ErikaS
      ErikaS
      I provided a very personal and vulnerable update to my thread under "Support". <3
      1. Sammy0225
        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.
        Nov 6, 2023
        ErikaS and SarahMLFlemmer like this.
      2. ErikaS
        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
        Nov 7, 2023
    4. Juliane
      Juliane
      How did the Zoom conference go?
      1. 4Grace likes this.
      2. View previous comments...
      3. Juliane
        Juliane
        Thanks a lot for sharing! Does this mean they think they will be able to perhaps treat your tinnitus?
        Nov 1, 2023
      4. ErikaS
        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.
        Nov 1, 2023
        SarahMLFlemmer and Juliane like this.
      5. Juliane
        Juliane
        We are many who appreciate you doing that ❤️
        Nov 2, 2023
        SarahMLFlemmer likes this.
    5. ErikaS
      ErikaS
      What causes one to hear 4+ chaotic T sounds compared to only hearing one T sound?
      1. ZFire, 4Grace and Ryan Scott like this.
      2. Juliane
        Juliane
        This condition is beyond sadistic. I am so sorry
        Oct 31, 2023
        SarahMLFlemmer, ErikaS and 4Grace like this.
    6. ErikaS
      ErikaS
      I despise leaf blowers.
      1. ZFire, Shannon Mo, Juliane and 5 others like this.
      2. View previous comments...
      3. ErikaS
        ErikaS
        Update: it’s coming from my R ear. One of my T sounds in that ear morphed into leaf blower sound. Why, God?
        Oct 29, 2023
        4Grace and Strawberryblonde like this.
      4. Strawberryblonde
        Strawberryblonde
        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
        Oct 29, 2023
        4Grace likes this.
      5. 4Grace
        4Grace
        ❤️
        Oct 29, 2023
    7. Sammy0225
      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
      1. View previous comments...
      2. Strawberryblonde
        Strawberryblonde
        @Sammy0225 have you seen the thread from @Coffeebean ? i think thats his username? He used pink noise at a specific frequency to help him
        Oct 26, 2023
      3. Strawberryblonde
        Strawberryblonde
        @ErikaS the same here. Even though my T is louder than its original level, if the diplacusis/distortions/reactivity lessened or went away then i would feel 10x better than it constantly pulling the rug from underneath me.
        Oct 26, 2023
        hopefuldede and ErikaS like this.
      4. Sammy0225
        Sammy0225
        @Strawberryblonde hello love (:
        Yes I read much of @Coffeebean post. I wish he was still around to give us an update. And I agree if we can eliminate reactivity quality of life would be 80% better
        Oct 26, 2023
        Juliane, Strawberryblonde and ErikaS like this.
    8. ErikaS
      ErikaS
      Has anyone heard about NeuroCytonix? Pretty fascinating intervention for an array of neurological disorders...
      1. ZFire, 4Grace, Juliane and 1 other person like this.
      2. Juliane
        Juliane
        Just looked it up. Sounds super interesting!
        Oct 25, 2023
        ErikaS likes this.
      3. ErikaS
        ErikaS
        @Juliane I have a Zoom conference call with one of their top Neurologists on Tuesday. Will share what they have to say.
        Oct 27, 2023
        ZFire, 4Grace and Juliane like this.
      4. Juliane
        Juliane
        Oh wow! Please do
        Oct 27, 2023
        4Grace likes this.
    9. ErikaS
      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.
      1. ZFire, aab and Stayinghopeful like this.
    10. ErikaS
      ErikaS
      Having one of those weeks/months where I wish I could get elective CI surgery on the right ear.
      1. View previous comments...
      2. ErikaS
        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.
        Oct 19, 2023
        Sammy0225 likes this.
      3. GG_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!
        Oct 20, 2023
      4. sakrt
        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?
        Oct 21, 2023
    11. SharonBell
      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.
    12. Justwaitinchilin
      Justwaitinchilin
      Did you submit your request to Biohaven?
      1. ErikaS
        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.
        Oct 17, 2023
        4Grace and SarahMLFlemmer like this.
      2. Justwaitinchilin
        Justwaitinchilin
        MyTomorrows told me they couldn’t advocate for an expanded access program that wasn’t already established.
        Oct 26, 2023
    13. ErikaS
      ErikaS
      My T just becomes more and more sound sensitive/reactive. With nothing on the near horizon plz share anything that has helped desensitize.
      1. SarahMLFlemmer
        SarahMLFlemmer
        Long, hot bath with lavender and epsom salt is the only thing that calms me besides Xanax.
        Oct 15, 2023
      2. ErikaS
        ErikaS
        I really need to get back into my epsom salt baths, @SarahMLFlemmer thanks for the reminder. Just filling the tub is aggravating to T, of course.
        Oct 15, 2023
        Juliane likes this.
    14. 4Grace
      4Grace
      Today your profile name resonates with me a lot. I never truly believed it until today.
      1. ErikaS
        ErikaS
        <3 I am so sorry I am only responding now. I don't know how I have any strength left, but I am still here. Praying for continued strength for all of us.
        Oct 27, 2023
        4Grace likes this.
      2. 4Grace
        4Grace
        @ErikaS - no worries. Everyone here suffers so much but are so kind. I really do love you guys. I hear you on the strength. Last bar and flashing. :( I still keep a bit of hope.
        Oct 27, 2023
    15. ErikaS
      ErikaS
      Some good news: the tick I pulled off me last Thursday came back negative for everything tested. Can stop the Doxy. Take a win where I can.
      1. ZFire, 4Grace, SarahMLFlemmer and 8 others like this.
      2. Ryan Scott
        Ryan Scott
        Great news!
        Oct 12, 2023
        4Grace and ErikaS like this.
    16. ErikaS
      ErikaS
      Mutli-sound reactive T with sounds ranging from 1k Hz to 15k Hz. An oscillating chaos of alarms & beeps with 15k radiating at all times.
      1. View previous comments...
      2. Sammy0225
        Sammy0225
        It definitely is Sam. I’m glad you got through the spike like you I also have a little one depending on me. Gotta stay strong for them <3 @SamRosemary
        Oct 11, 2023
      3. ErikaS
        ErikaS
        @SamRosemary @Sammy0225 I REALLY want to know the auditory system/inner ear damage/potassium ion channel function difference between those like us who hear an orchestra from hell of various kinds of sounds, and then those who just have one sound. When I wake up in the morning, its like roll call of all the sounds and its insane to me how this exists and I'm 13 months in.
        Oct 11, 2023
        Sammy0225 likes this.
      4. Pinhead
        Pinhead
        @ErikaS It's the same for me, fellow Pittsburgher. My sounds each 'clock in' every morning, one by one. I get a solid 10 seconds of normalcy before that happens, during which time I envision my true self being cocooned by dark, black thorns...and then my day begins.
        Oct 11, 2023
        ErikaS and Sammy0225 like this.
    17. ErikaS
      ErikaS
      Just pulled a tick off of me. :,( I CANNOT get Lymes. My sister has it bad. Protocol is Doxycycline but reading it can worsen T!
      1. ZFire and Sammy0225 like this.
      2. View previous comments...
      3. ErikaS
        ErikaS
        @dan From what I understand Doxy is more effective that Amoxicillin, but if someone absolutely cannot take Doxy, then Amoxicillin is used. But it also depends on the infection. Lyme is the main but there are many co-infections like Babesia that cause their own illnesses and symptoms.
        Oct 12, 2023
        ZFire and dan like this.
      4. ErikaS
        ErikaS
        @dan if I were you I would get comprehensive blood testing done to determine Lyme and co-infections then work with a Lyme literate doctor. Thankfully my functional medicine doctor who acts as my endocrinologist and PCP is very Lyme literate
        Oct 12, 2023
        ZFire and dan like this.
      5. ErikaS
        ErikaS
        I read stories in success stories about how many did not see/hear improvement with their tinnitus until 18 months or more. I Try to hold onto that, I just get scared when it feels like I worsen little by little. But I also have a lot of stressful situations going on in my life which I know do not help.
        Oct 14, 2023
        ZFire likes this.
    18. ErikaS
      ErikaS
      Inner ear vibrations have been getting worse. Worse w/ sound exposure but also under a lot of stress. It’s opposite of how TTTS described..
      1. aab likes this.
      2. View previous comments...
      3. MindOverMatter
        MindOverMatter
        Yes @ErikaS , stress is a huge contributor to these issues. Talking out of own experience. I've had long spells with this. Getting out in nature (if possible), calming down in general, keep a clean diet and such, and maybe supplement with magnesium glycinate 200-500 mg a day, helps a lot.
        Oct 2, 2023
        aab and ErikaS like this.
      4. Tryn2BHopeful
        Tryn2BHopeful
        @ErikaS interesting... I have been on remeron as well on and off since onset. I don't recall having this initially... I couldn't tell you if it's the middle ear but it does have a faint sensation to it.
        Oct 3, 2023
      5. Sammy0225
        Sammy0225
        @ErikaS i had exactly this!! Took months to go away. Yes it had more of a physical feeling of vibration more than a noise or sound.It slowly faded after my trip to the beach house last year. Looking back now I feel it was a form of MEM or TTTS. It activated to low bass sounds. (Cars passing outside and such) I’ll add that after a car ride it vibrated like crazy
        Oct 3, 2023
        BrunoSLM, ErikaS and Tryn2BHopeful like this.
    19. ErikaS
      ErikaS
      I truly believe that Dr. Shore’s device AND the use of Xen1101 or BHV-7000 could be the magic 1-2 punch for many to get their life back.
      1. ZFire, SamRosemary, Utdmad89 and 10 others like this.
      2. 4alien2
        4alien2
        I hope they hurry
        Sep 30, 2023
        Utdmad89, ErikaS and stacey like this.
      3. stacey
        stacey
        Does anyone know when these are supposed to be coming out?
        Oct 1, 2023
      4. ErikaS
        ErikaS
        @stacey no one knows for sure but I would think access to at least one of these avenues will happen in the next 2-3 years
        Oct 1, 2023
        SamRosemary, Utdmad89 and stacey like this.
    20. ErikaS
      ErikaS
      Tree grinding has been going on for over an hour at the corner of my street. So much tree grinding lately I feel personally attacked!
      1. Stayinghopeful, Sammy0225 and 4alien2 like this.
    21. DebInAustralia
      DebInAustralia
      Hi Erika,

      Just read your story. Thankyou for sharing.
      Just wondered if you've ever thought to try ldn?
      My friend ( SamanthaR) developed head hissing with her first ivf pregnancy, then cochlea hydrops with a subsequent ivf pregnancy ( responded to curcumin, pred, and ldn)

      You'll find her story on this forum
      1. BrOKeN_1 likes this.
      2. ErikaS
        ErikaS
        Hi @DebInAustralia so sorry I am only responding now! I typed a response a few days ago but guess I never hit post :)
        Thank you for your sweet post. I have read about Sam's success with that and was so happy for her! I was actually on LDN for quite some during fertility treatments way before reactive T came and ruined my life...
        Sep 27, 2023
      3. ErikaS
        ErikaS
        I did try it a couple times early on in the reactive T journey, but a day or two after I started it, it sped up the sounds of my T and sounded like it was making things more hyper if that makes sense. So after a couple days of that I stopped. My origin of T was ultra high frequency SSHL from ear infection in R ear that was not treated with heavy dose steroids, so definitely nerve/cochlea damage. :(
        Sep 27, 2023
    22. ErikaS
      ErikaS
      My hearing loss/most debilitating T sound has only become more somatic. Really hope Dr. S and her team are making moves as fast as they can.
      1. SarahMLFlemmer
        SarahMLFlemmer
        I'm sure she is stuck in the waiting game like the rest of us.
        Sep 21, 2023
      2. SarahMLFlemmer
        SarahMLFlemmer
        Hang in there, sister. ❤️
        Sep 21, 2023
        ErikaS likes this.
    23. ErikaS
      ErikaS
      Stopping the Keppra. It’s having a very similar if not same negative effect that Flexeril did. So Keppra and Flexeril are no go’s for me. :(
      1. aab, 4alien2, BrOKeN_1 and 2 others like this.
      2. View previous comments...
      3. ErikaS
        ErikaS
        @BrOKeN_1 I was on the Flexeril back in April for a little over a week, then the Keppra for 5 days.
        Sep 20, 2023
        JeffToob likes this.
      4. ErikaS
        ErikaS
        @Strawberryblonde if you go to the Levetiracetam (Keppra) thread you’ll read my more in depth update and what I experienced there.
        Sep 20, 2023
      5. ErikaS
        ErikaS
        I know it may sound like I didn’t give the Keppra a good trial run, but I was only on 250mg 2x a day (very low dose) and it quickly was doing the opposite and more of what it positively did for others. Increased my worst tinnitus sound, increased my sound sensitive tinnitus/reactivity, and decreased my sound tolerance threshold while creating physical over stimulated sensation in ears.
        Sep 20, 2023
        Sammy0225 likes this.
    24. ErikaS
      ErikaS
      Got the Keppra script. Praying with all of me that it significantly helps with my reactivity/sound sensitive component.
      1. ErikaS
        ErikaS
        Will be posting updates on the Keppra thread.
        Sep 18, 2023
        Sammy0225 likes this.
    25. ErikaS
      ErikaS
      Almost a week away from hopefully getting a Keppra script. Will document if it benefits my reactivity.
      1. View previous comments...
      2. Strawberryblonde
        Strawberryblonde
        How is your reactivity lately?? Mine has come back for unknown reasons. Oscillating morse code beep and its shtopping me from getting a full sleep. :(
        Sep 8, 2023
      3. ErikaS
        ErikaS
        @Strawberryblonde my noise sensitive tinnitus/reactivity has been, since day 1, my debilitating factor. It’s never good. If my tinnitus did not immediately spike or react to sound, I would consider myself functioning and probably not be on this site much. That’s how my reactivity is lately/all the time lol
        Sep 8, 2023
      4. Strawberryblonde
        Strawberryblonde
        Do surely hope keppra has some positive effects for you :) no one should suffer this on a daily basis @ErikaS
        Sep 8, 2023
        ErikaS and SarahMLFlemmer like this.
    26. ErikaS
      ErikaS
      Leading up to & start of my cycle, T intrusiveness & volume went back more to baseline. I hate hormones. Hope it eases up in a few days.
      1. Mattstarr251
        Mattstarr251
        hi Erica I saw you've tried tdcs has it helped? thank you
        Sep 4, 2023
      2. ErikaS
        ErikaS
        @Mattstarr251 unfortunately it aggravated my reactivity too much I had to stop
        Sep 5, 2023
    27. ErikaS
      ErikaS
      Tinnitus is notably less intrusive, further off in the distance sounding. Day 9 of 150mg of Trileptal.
      1. Sammy0225, DeanD, Ondine and 8 others like this.
      2. View previous comments...
      3. ErikaS
        ErikaS
        Trileptal is the “newer” version with less harsh side affects and does not show risk with fertility and pregnancy that Tegretol does.
        Aug 29, 2023
      4. DeanD
        DeanD
        @ErikaS - that's great to hear - is it helping with the reactivity too?
        Sep 2, 2023
      5. ErikaS
        ErikaS
        @DeanD no reactivity is still my main debilitation. That’s what I am looking forward to on Sept 15th with good Neuro, hoping to get a prescription with Keppra. I pray every day it works for me like it did for a handful of people.
        Sep 3, 2023
    28. ErikaS
      ErikaS
      Today is day 5 or 6 of 150mg of Trileptal at night, and dare I say it, a quite mild T day compared to any previous day.
      1. Juliane, Sammy0225, BrOKeN_1 and 5 others like this.
      2. View previous comments...
      3. ErikaS
        ErikaS
        @DeanD how have you been doing? I think about you often. Has the breathing and swallowing improved at all?
        Aug 25, 2023
      4. DeanD
        DeanD
        @ErikaS - I hope they both work out for you! Not much, ups and downs. Eating a little better but constant spasms still. Second neurologist has mentioned Globus but I think its a little more than that. He feels all these spasms were brought on by the microsuction - and 8th cranial nerve affecting the 9th.
        Aug 25, 2023
      5. DeanD
        DeanD
        @ErikaS - Had CT Scan of ears, and blood test, and back to see him in Sept where he will talk medication - but only for the throat. He himself has tinnitus, and needs a white noise machine at night, but feels no medication will help.
        I'll be flying to the US at this rate for someone to listen!
        Aug 25, 2023
    29. ErikaS
      ErikaS
      4 weeks away from Neuro appointment where I pray I will get a script for Keppra. Less reactivity = much greater QoL
      1. Sammy0225, tpj and Joe Cuber like this.
      2. View previous comments...
      3. ErikaS
        ErikaS
        @SarahMLFlemmer if you search “Keppra” and read threads on it here, you’ll see what it is and how it has benefitted some with reactivity.
        Aug 19, 2023
        Sammy0225 likes this.
      4. Tryn2BHopeful
        Tryn2BHopeful
        @ErikaS what's interesting is when I was in the hearing test booth my T was extremely low! I wanted to live in there. Also I am in PA as well!
        Aug 19, 2023
      5. ErikaS
        ErikaS
        @Tryn2BHopeful reactivity is the sole thing that keeps me debilitated. I don’t even know what my constant baseline T would sound like with reactivity/instant changing or spiking to sound removed because kind of what you said, reactivity is the identity of my tinnitus.
        Aug 21, 2023
        Sammy0225 and Tryn2BHopeful like this.
    30. ErikaS
      ErikaS
      I spoke with a personal contact who is in specialty/investigative pharmacy and also has a background in music...
      1. jimvee likes this.
      2. View previous comments...
      3. MadeleineHope
        MadeleineHope
        Just had a thought for you Erika as I was doing my own research - have you ever considered trying Ambroxol? It's a sodium channel blocker among other things, just like Carbamazepine which is used to treat epilepsy.
        Aug 16, 2023
      4. ErikaS
        ErikaS
        I am interested in Keppra because it’s affect on potassium channel. And again I am looking for something that has directly improved reactivity for some because if I can calm reactivity, I am able to function. So with the anecdotal evidence with Keppra I want to start there.
        Aug 17, 2023
        SarahMLFlemmer likes this.
      5. MadeleineHope
        MadeleineHope
        Wishing you the best of luck! Keep us updated :)
        Aug 17, 2023
        ErikaS likes this.
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  • About

    Gender:
    Female
    Location:
    Pennsylvania, USA
    Tinnitus Since:
    09/2022
    Cause of Tinnitus:
    Ear infection/Ultra High Frequency SSHL in Right Ear