ErikaS

ErikaS

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Member From Pennsylvania, USA
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  • 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.
    ErikaS
    My T just becomes more and more sound sensitive/reactive. With nothing on the near horizon plz share anything that has helped desensitize.
    SarahMLFlemmer
    Long, hot bath with lavender and epsom salt is the only thing that calms me besides Xanax.
    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.
    4Grace
    Today your profile name resonates with me a lot. I never truly believed it until today.
    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.
    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.
    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.
    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.
    View previous comments…
    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
    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.
    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.
    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!
    View previous comments…
    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.
    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
    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.
    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..
    View previous comments…
    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.
    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.
    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
    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.
    4alien2
    I hope they hurry
    stacey
    Does anyone know when these are supposed to be coming out?
    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
    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!
    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
    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...
    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. :(
    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.
    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. :(
    View previous comments…
    ErikaS
    @BrOKeN_1 I was on the Flexeril back in April for a little over a week, then the Keppra for 5 days.
    ErikaS
    @Strawberryblonde if you go to the Levetiracetam (Keppra) thread you'll read my more in depth update and what I experienced there.
    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.
    ErikaS
    Got the Keppra script. Praying with all of me that it significantly helps with my reactivity/sound sensitive component.
    ErikaS
    Almost a week away from hopefully getting a Keppra script. Will document if it benefits my reactivity.
    View previous comments…
    S
    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. :(
    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
    S
    Do surely hope keppra has some positive effects for you :) no one should suffer this on a daily basis @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.
    ErikaS
    Tinnitus is notably less intrusive, further off in the distance sounding. Day 9 of 150mg of Trileptal.
    View previous comments…
    ErikaS
    Trileptal is the "newer" version with less harsh side affects and does not show risk with fertility and pregnancy that Tegretol does.
    DeanD
    @ErikaS - that's great to hear - is it helping with the reactivity too?
    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.
    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.
    View previous comments…
    ErikaS
    @DeanD how have you been doing? I think about you often. Has the breathing and swallowing improved at all?
    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.
    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!
    ErikaS
    4 weeks away from Neuro appointment where I pray I will get a script for Keppra. Less reactivity = much greater QoL
    View previous comments…
    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.
    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!
    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.
    ErikaS
    I spoke with a personal contact who is in specialty/investigative pharmacy and also has a background in music...
    View previous comments…
    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.
    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.
    MadeleineHope
    Wishing you the best of luck! Keep us updated :)
    Dizzyhead888
    Hello - Tell me more about LLLT. Are you using a targeted device inside the ear or outside the ear ? i presume it's both infrared and redlight.
    I have a big panel for the body but considering using it on the ears and neck (neck because my tinnitus is also somatic)
    ErikaS
    I honestly have not researched it in depth myself. The practitioner I am seeing is trained and very well versed in the use of laser. She has been using an array of settings based on frequencies around the ears, over parts of brainstem, pointed in the ears, and over areas of brain. All shorter times due to my sensitivity with reactivity.
    ErikaS
    ACRN beeps at 12k or higher notably knock down my ultra-high sound. Now I just need the Shore timed zaps to make this permanent.Come on, SS!
    ErikaS
    Went to open an unopened bottle of organic OJ, the lid popped off like a cork with a loud pop and OJ fizzed everywhere. Ugh my ears ;(
    4Grace
    Hello - I just came to see your story. I feel your pain. May God bless you and bring you peace. I too have a crazy life story so I can relate to some degree. I was like you full of joy and life This ridiculous noise in my ear took everything from me. God bless
    Gabriel
    I hope you are good, thinking of you and your treatment. I hope you are getting some relief :)
    ErikaS
    Thank you! Unfortunately, I had to stop the electric stim treatment. With having to drive there 3x a week and then the treatment itself seemed to exacerbate more than help. So I stopped that for now and have just kept things low key. I am working with a functional neurologist who is located in Michigan, I will be visiting her the week of the 6th.
    ErikaS
    Seems like my tinnitus is finally stabilizing after my first big setback in early April. Reassuring feeling.
    View previous comments…
    H
    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
    ErikaS
    @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..
    ErikaS
    @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.
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