ErikaS

ErikaS

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Member From Pennsylvania, USA
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  • 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…
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    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.
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    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.
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    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?
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    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.
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    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?
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    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.
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    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..
    ErikaS
    6 1/2 months in and rain on my rooftop still aggravates my reactivity at 12k hz and up the same as it did 2-3 months in. Ugh ;(
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    Artemis2K
    Unfortunately, I had a conversation with Dr. Minbo Shim, and he said that he tried standalone growth factors, but they didn't work well enough. Only the PRP worked. From what I read, lab grown exosomes don't have all of those growth factors. Also, PRP is supposedly to be sticky when warm, which I don't know if exosomes are.
    Artemis2K
    Also, based on what I read a few months ago, growth factors also encourage differentiation and proliferation of stem cells, so it sounds to me that they must go together to maximize potential effects. This is the route I will be taking. I might also get the standard stem cell treatment from the AZ clinic as well as see if they'd be willing to talk to Dr. Shim now that I have the time to make the calls.
    Artemis2K
    Very sorry you haven't had recovery yet. Very strange for some people in studies of growth factors and stem cells after a significant amount of time but very few here. Makes me wonder why.
    ErikaS
    If my ears can hear it, my T sounds will most likely change/react to it. Anyone else relate?
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    SarahMLFlemmer
    @ErikaS my T has been sounding more like the buzzing of bees lately so I thought it was calming down but tonight my ears are legit SCREAMING.
    ErikaS
    @ZFire Lower frequency sounds like my fridge or our baseboard heating still affect how it presents but tend to drown out more, thank God. But anything higher frequency and constant, no good.
    ErikaS
    @Joe Cuber I pray with all of me that the Michigan Device can calm down reactivity!
    SarahMLFlemmer
    How are you today?
    View previous comments…
    ErikaS
    If I had nonreactive tinnitus that bothered me, I would definitely get sound generating devices to help mask/distract me from the tinnitus. Unfortunately I have the reactive component, so I hesitated. I even asked TRT lady if we could do hearing aids and try different things with amplification or the opposite, but she didn't feel that would fit my situation…
    ErikaS
    She thought I could tackle my reactivity and tinnitus with sound generating devices, but I was nervous with that given stories on here. Believe me, if there was something that I felt that could help me now That wasn't stem cells and the money it cost us, I would have tried it.
    SarahMLFlemmer
    @ErikaS I'm saving up our tax returns and whatever else, following testimonials here also. I'll get the money, I just want to make sure that I spend it on something that has been tried and true. I appreciate your efforts with the stem cell stuff. I'm curious to see how it turns out for you, I sure hope it helps you!!
    ErikaS
    I will have 1-3 ok days where I push positivity, become hopeful, then mentally crash the following 1-3 days. This is so mentally taxing :'(
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    Ryan Scott
    @ErikaS Same here its like I use all my will power to try and stay optimistic ensuring myself I will live a normal life again. Then spiral down hill for a few days were T gets me super stressed and depressed. I want to be my normal self again so bad but sometimes it gets the best of me.
    Isaac Ramsay
    Same, I will have periods of good mental health, then some kind of spike will set me back. It really is a cycle.
    SarahMLFlemmer
    @ErikaS It does get overwhelming for me too, it's a lot to deal with. But we're dealing with it! Two steps forward and one step back is still a step forward in the right direction!
    Wrfortiscue
    How are you doing
    ErikaS
    Honestly, I've had some of my best days the past 3 days. Some rough/annoying moments, but overall pretty manageable. Thanks for asking. How about you?
    Wrfortiscue
    @ErikaS good to hear. I had a good two days and back to bleh lol
    ErikaS
    @Wrfortiscue yeah, my ears got word that I was enjoying a few good days so they decided to be more testy today ;( if only progress could be linear.
    ErikaS
    Did laundry, went to grocery store & Target, walked the pup, cleaned the shower, bathed the pup, now watching some TV. T did not win today!
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    DeanD
    @ErikaS - do you manage to do all that without ear plugs?
    ErikaS
    Yes, @DeanD … ear plugs make my tinnitus sound louder and I hear the reactivity/spike more with them in, which screws with my mental state too much. These are not every day repeated tasks though, far from it. This was a "good day" which happen randomly and rarely.
    DeanD
    @ErikaS - weird, as mine is the total opposite. T is slightly more quieter in ear plugs than without. I need to get off them! Tough!
    I'm really pleased for your good day :) - hopefully many more to come!
    ErikaS
    Going to Cancun in 3 weeks! Ears already calmed down from my Florida trip/treatment, so I feel confident with my protection set up…
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    ErikaS
    @Guywithapug I know I was very nervous about this. My in laws booked it months ago for all of us so I didn't want to be "that one" to bring it up, but I did and my mother in law already checked with the resort and their transportation and it sounds like safety parameters are good.
    ErikaS
    @scotty03874 I was hesitant to put this in writing becuase I don't want to jinx it, but if there is something that has shown a difference/change in the last 4 days, it's my high oscillating electric hiss. Still has its moments, but it has calmed down reactive & intrusive wise. Lower tones are still there & not changed, but as we know in the cochlea, the freq. sitting first past the round window are the high ones..
    ErikaS
    @scotty03874 So WHO knows but I have noticed this while watching TV, doing daily things around the house, etc. Not celebrating it by any means at this point, the true test will be when I get my monthly cycle as the high electric hiss tends to become its worst then. But, just thought to share.
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