ErikaS

ErikaS

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Member From Pennsylvania, USA
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  • 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.
    View previous comments…
    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!
    View previous comments…
    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.
    BrysonKingMe
    Hey I now realize that you were probably just trying to vent and not looking for anything like I said. I did not mean to come across as an ass.
    ErikaS
    After reading and searching I think it's the Remeron causing the vibrations, on such a low dose just for sleep but going to go off.
    View previous comments…
    ErikaS
    @MadeleineHope the irony is about 2-3 weeks ago or so I would think to myself "I am pretty tired at night even before the Remeron, I bet I could wean off and still sleep okay with my natural supplement line up", so that will be my plan moving forward.
    ErikaS
    This was my timeline of med involvement: last dose of Flexeril (muscle relaxer) on 23rd after 6 days on it between 15-20mg. I stopped because it was more giving me spike, weird ear issues and not helping. Started small increase of Ativan in AM on 24th (.25mg in AM and PM instead of just .25 in PM). Vibrations laying down at night seemed to appear 3-4 days as later. Did not change Remeron.
    H
    I've no words of wisdom - I just really hope it subsides for you. I haven't taken any sleep medication I'm just so afraid to.
    ErikaS
    8 months since onset & mornings still my hardest.Waking up to not working & not the life I lived still throws me.Hugs to all who feel same.
    ErikaS
    In ears still vibrating when laying down. Night and morning. Worse when I put my head down/blood rush to head. Any input appreciated.
    View previous comments…
    S
    @ErikaS i think anxiety may be playing a part in this like you said. Your limbic system has had a mix of a nice holiday and then a sort of comedown from a muscle relaxer, plus the feeling of anxiety from both. Getting and allowing the body to recalibrate for a lack of a better word may get you back into a more equilibrium state.
    ErikaS
    @Strawberryblonde I think you're right. I completed a big part of my DNRS training today, and it's just solidifying more and more how impaired my limbic system is and how it can absolutely exacerbate all my symptoms, from the vibrations to reactivity/spiking tinnitus. I'm determined to use DNRS how Marin did and hopefully reset Limby and have more stabilized, non reactive T!
    ErikaS
    @Joe Cuber position doesn't seem to change it much, but when I move or if any sound is on like low fan or my heater, it goes away, then as soon as I'm still and in silence, it comes on. I think my nerves are all frazzled from my actual spike/setback and then emotional/mental stresses.
    ErikaS
    I dove into DNRS, neural reprocessing/retraining, & limbic system impairment this weekend & my eyes have been opened…
    View previous comments…
    ErikaS
    @Ryan Scott you purchase it on the website .. retrainingthebrain.com
    H
    @ErikaS I looked into the Gupta programme a few months back sounds similar. I'd be interested in trying can you report back in a week or two with how you are getting on. Hugs to you!
    gameover
    Sort of steep price. I am always skeptical about those self-improvement programs for $$$. But maybe I should not be.
    cyberspace
    Did the intratympanic dexamethasone help
    ErikaS
    No, unfortunately I was 4 months out from onset. It was a try but no improvement.
    ErikaS
    When I lay down for bed I hear vibration in ear. When I wake up its not there, but when I move around (get blood moving) it comes back.
    View previous comments…
    ErikaS
    @yeezysqueezy hoping it comes down for me as my ears calm down from spike!

    Sorry to hear @Hardwell, not fun!
    H
    Can you alter yours in other ways? A quick head movement stops it very briefly and if I look to my left as far as I can that also seems to stop it for a good 20 seconds or so. I'm also finding some relief putting an ear plug in that ear, as if opening the ear canal is reducing the intensity
    ErikaS
    @Hardwell yes when I am laying down if I move my head it stops/can't hear or feel it but as soon as I put my head down and be still it resumes.
    Thanks for letting me know about the plug !
    ErikaS
    With my T, I don't just hear sound(s) where my HL is. It's like all neural sound flood gates opened & I can hear it all in a quiet room.
    View previous comments…
    ErikaS
    @Matchbox when I am around some ambient noise in my home (my kitchen with fridge running) I usually have 3-4 sounds, one being very high freq. which is where HL is, the others between 2-3 kHz but all can change some pitch due to reactivity.
    When I'm silence, it's like more and more sounds slowly come out and range from low to high tones and can sound like random car horns, buzzing, etc.
    ErikaS
    I literally can have two ear fulls of 4 sounds in each and it's beyond overwhelming. I don't know why this happens. I don't know why my ears/brain do this. I don't know why I can walk from one room to the next and it present in a different "mode".
    SarahMLFlemmer
    @ErikaS I miss silence. Silence now sounds like I've been hit by a flashbang.
    ErikaS
    I normally have 3-4 consistent sounds & a known level of sensitivity. Now, sensitivity is up w/ changing sounds. Is this normal w/ a spike?
    View previous comments…
    PennyCat
    @ErikaS @Strawberryblonde It's interesting you mention the effects of progesterone. I got my IUD removed in early January after 6 yrs of having it, and around that time is when I noticed TTTS and H symptoms (already had T). I wonder if it's related somehow.
    ErikaS
    I'm just so scared if the muscle relaxer is what truly spiked me to what I'm experiencing now, which it seems it was that, did it make a permanent change :( only took it for 5-6 days. And it was the one med most said improvement noted or didn't change anything at all so I figured it was safe enough to try.
    ErikaS
    @PennyCat My T can get more sensitive/more intrusive when my cycle is coming, but nothing like what I am experiencing now. Hopefully this works it's way out.
    Women who a pre-menopause/experiencing hormone changes can experience T.
    ErikaS
    In my worst spike/setback since onset. I think bad reaction to muscle relaxer. Hopefully it calms down in a few days ;(
    View previous comments…
    ErikaS
    @Hardwell this is my most loathed sound. I am so sorry you are dealing with it too. If you have TinnitusPlay app, try the neuromodulation and set the frequency to something higher (12 kHz) and let the beeps play and see if that helps at all.
    Ryan Scott
    Tinnitus is so stupid makes zero sense. Most other conditions that aren't terminal illnesses start at the worse part then heal from there. But no not tinnitus got to be difficult.
    ErikaS
    ErikaS
    Would even a little wax up against an eardrum cause T to be more sensitive and/or louder?
    View previous comments…
    ErikaS
    Thanks for the feedback!
    ErikaS
    @Jupiterman @Damocles What made me ask is the fact that when I was traveling, I was putting my earplugs in many times and making sure a good seal. on the plane, at the beach, walking around, etc. A lot more than I do at home because I limit my exposure therefore don't use them much at all. The ear buds go in a good amount, so I didn't know if that could have done it or not.
    Damocles
    Yeah, frequent use of earplugs can push wax further down and make it (temporarily) louder.

    Happens to me often, as I use my earplugs pretty much daily. Kind of just had to get used to it.

    As long as it's not permanent, I've got no complaints.
    ErikaS
    Just had a fleeting T that temp. knocked out my reactive high crap in R ear & only sound was the soft fleeting T. Pick that pathway, brain!
    Jupiterman
    Sounds like your brain is sorting this out for you, albeit slowly.

    Try and think as positively as you can when your brain gets these temporary successes in fading the tinnitus. Make sure your conscious brain 'tells' your sub-conscious brain that whatever you did there was good, giving it every incentive to stay on that pathway.
    ErikaS
    @Jupiterman so slowly, and I would love to think that! I do make sure to smile when this happens to send my brain that positive response too.
    ErikaS
    ACRN beeps with freq. set between 10.5-12k hz notably turn down my reactive high freq. tone(s) while listening...
    ErikaS
    Does anyone with fluctuating T / T that changes find that the acoustics of a room alone can affect how you hear it? Weird I know, thus is T.
    View previous comments…
    ErikaS
    When I go into my husbands office which is basically a 3 seasons room that we turned into an enclosed area (way less insulation than all other rooms) it's like my ears turn down and T is more manageable. I also felt/heard this affect in Cancun in our hotel room.

    @Jupiterman TV spikes my high electric tone(s) and music and phone aggravate all tones some, but I can handle music and phone much more than TV.
    SarahMLFlemmer
    Yes. My T is happiest in the kitchen, but step 15 steps to the living room couch and it's a whole another animal. *shrugs*
    ErikaS
    ErikaS
    Exhausted and depressed. I would do anything/take anything to lessen my ultra high frequency reactive shit.
    View previous comments…
    ErikaS
    @ZFire need a clinic that can just put me to sleep for about 3 months and let my bran and body fully rest and exist outside of a constant fight or flight for once.
    ZFire
    That'd be nice. I wish Cryosleep existed. Sleep until effective treatments come out.
    Damocles
    I have dreamt of this scenario coming true many times @ZFire-san.
    MadeleineHope
    Hi @ErikaS , I just wanted to come by to officially say hello :) I've also been dealing with multi-tonal, reactive tinnitus for over six months (not to mention hyperacusis...) & can completely relate to feeling worn out & depressed after all this time!
    ErikaS
    Thank you for reaching out, @MadeleineHope .. I am so sorry you find yourself here as well, I am struggling mentally a lot lately but hope I make a good medication decision to help with this while not negatively affecting my tinnitus. Are you taking anything?
    MadeleineHope
    @ErikaS I have not been taking anything for fear of making the tinnitus worse... I even stopped taking my daily antihistamine! But it's been incredibly challenging, I'm not going to lie. I see that your doctor agreed to prescribing the cyclobenzaprine... how are you finding it so far?
    ErikaS
    @MadeleineHope I have only taken it twice, my Doc said to give it time, about 2-3 weeks to see if it has any positive effect.
    ErikaS
    Even though T & R are still their crappy selves, since getting back from Cancun, my distortions are better/barely there. So odd.
    Sammy0225
    That's amazing news Erika it seems possibly your ears are starting to show improvements If the distortions begin fading I took it as a sign that the ears are still re-calibrating. Next reactiveness should follow suit
    ErikaS
    I really hope so, @Sammy0225 .. reactivity/wind up T has been the exact same for so many months now with no improvement. Some days worse, but no progress from baseline. It's exhausting, and my high hiss is extra hissy/electrical in R ear since getting back :( .. struggling.
    ErikaS
    This post did not age well. Distortions are pretty much back ;( can't count on anything with freaking T.
    eagerUser
    Hi Erika,
    You are still in the early days. I do hope everything improves for you and you are once again T free before any real treatments/cure come.
    View previous comments…
    ErikaS
    And with unilateral SSHL being my cause, not sure if/when I would be T free, however at this point I would just need my reactivity to go away and my ultra high frequency T to calm down to be able to habituate and live life again.
    eagerUser
    Well, Erika you still have a great chance to hear silence in the coming months. Remember not all with hearing loss have tinnitus. Also, Dr. Shore's promising treatment is on the way. When you reach your 2 years anniversary even if it's not gone the device will most probably be available.

    About reactivity I read some success stories on this website that people could control reactivity with diet.
    ErikaS
    I'm hoping the devise is available this time next year, @eagerUser ! Too many people suffering for way too long, so much longer than I have. If something is available that shows the first sign of real promise, I hope all involved are moving as quickly as possible to get to market. I also hope they realize they literally will save lives in doing so.
    ErikaS
    All I want to do is sit and watch TV without the reactive electric crap/tones turning up in my ears.
    View previous comments…
    ErikaS
    You're so sweet, thanks for checking in @Sammy0225 . How is work going for you? I'm sure first couple weeks back will be an adjustment and tiring!
    Sammy0225
    Your welcome! I'm not going lie it's hard having to focus my attention away from my t.. The last few days have been taxing like by the end of the day my brain is fried. But I knew it would be like this. I just gotta keep pushing forward we both do <3
    ErikaS
    Keep that mindset going as much as you can, @Sammy0225 ! It's so hard especially when we become both physically and mentally exhausted. But you have seen improvement, therefore you know you can improve more. We've got this, friend <3
    ErikaS
    Almost home from our trip away. T is a bit irritated, need quiet but not looking forward to hard reality.
    H
    @ErikaS ugh! I know the feeling. The feeling of escapism when you're on a break. Then the sinking dread. Be kind to yourself x
    ErikaS
    @hopefuldede Try to "ignore" it as best as I can, and I am grateful/blessed to be able to in nosier environments for the most part, but the quieter, calm moments that are needed for rest don't allow any escape from the dreaded sounds of T.
    ErikaS
    I don't seem to have any new tones which is a positive sign that noise is not and was never my trigger for new tones, getting sick/viruses did. So interesting because I got my tinnitus from ear infection that caused SSHL in R ear, but also gave me reactivity so you'd think prolong noise exposure would worsen? This T thing is wild.
    ErikaS
    Hi all, day 5 in Cancun! Ears are much more tolerable here than home & I have been around so much more sound. Wearing protection off and on.
    Lurius
    My brother is in Mexico right now as well, visiting relatives, as we are half mexican.
    BrOKeN_1
    Uhh. I don't remember getting an invite! ;P jk. Glad your able to relax a bit.
    Sammy0225
    Hope you're enjoying your vacation!! {;
    Ryan Scott
    Have you noticed any improvements yet from your treatments Erika?
    View previous comments…
    Ryan Scott
    @ErikaS That is great hope your family enjoyed vacation. Was just checking in to see if you were seeing any progress.
    ErikaS
    @Ryan Scott cannot say any consistent progress is seen at this time. I have taken quite a depression dive in the past 3 weeks, just kind of hitting my limit. Will be trying medication to help with this and hopefully not negatively affect T and R.
    Ryan Scott
    @ErikaS Sorry to hear that, its pretty much been the same for me. The last 3 weeks have been really hard for some reason. Haven't had the motivation to do much besides stay in bed lately and every time I want to do something I'm like jeez will this make T worse lol.
    ErikaS
    Thoughts plz.. Could .25mg of Ativan/daily not allow reactivity/overall improvement? I didn't think at low dose but maybe wrong.
    View previous comments…
    ErikaS
    Thank you for the words @BrOKeN_1 , sometimes I just feel like I should get my brain to baseline since I went on the Ativan one month in and been on it since and I haven't seen any progress. But definitely have to stop beating myself up when I'm just trying to survive and move toward improvement.
    RingerHisser
    Dont feel bad about this. I have an RX for lorazapem(Ativan). I am 6 days almost 7 from acoustic trauma firing guns. They put me on prednisone and it's driving my insomnia worse. The Ativan is helping to ground me for now. Follow a Doctor's guidance.
    Ryan Scott
    @RingerHisser I was on 60 mg prednisone for 10 days it definitely makes sleeping harder.
    ErikaS
    I wish unilateral sudden loss equaled unilateral tinnitus. My left ear has no damage, yet it has the loudest tone and has up to 3 tones.
    yeezysqueezy
    So frustrating! Back when I first got tinnitus my Otoacoustic emissions showed a dip in the right ear but my left ear was the one screaming
    Guywithapug
    In my case it did, luckily!
    RingerHisser
    This is me. My left ear is the one with the ringing but hearing test said it was the right with the loss.
    ErikaS
    Tinnitus: A condition in which a thousand and one things can make it instantly worse, but not one thing makes it instantly better.
    ErikaS
    Two of my BFs from out of town surprised me with a weekend visit. Yesterday was the 1st day in so long that I didn't let T take priority..
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