Sammy0225

Sammy0225

Member From Texas
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  • Sammy0225
    Hi guys :) still have T and it's still reactive probably will have it till the day I die unfortunately. Hope yall are doing okay
    View previous comments…
    Sammy0225
    @Zigs well during my worst days I couldn't help my partner with the kids unfortunately as anything above whisper level really bothered my ears it took several months to builds small tolerance and eventually I built more and more.
    Sammy0225
    @Zigs Now I can handle all my children in one room again at normal conversation levels. Took roughly two years! Lots of ups and downs. As for the beach house it definitely helped during my onset! Any place you can find that relaxes you well help the mental aspect :)
    Zigs
    Thanks for replying! That's basically what I'm doing but I feel really guilty about it!
    Zigs
    Hi Sammy, hope you are feeling better. I read your story and noticed you said you spent months in one room with earmuffs on. I'm just wondering how did you manage with your children at that time? Did your wife look after them solely or were you able to take care of them too? Did you literally just sit in silence for months? Thank you
    ErikaS
    Hi friend! Wanted to check in and see how you're doing from that spike last week. I am around day 13,14 and still have to be conservative as my reactivity is so sensitive, T is notably louder going to bed and waking up, and all sounds are out to play ;(
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    Sammy0225
    "Before this setback, I was driving all over the city with minimal reactivity. I was also able to tolerate quiet places. The kicker is, I was inside my house when I heard someone honking their loud horn up front. Additionally, the landscaping people didn't give a warning; they just started using loud leaf blowers by my front door."
    Sammy0225
    What you're describing definitely sounds like a setback cause that's how mine works also. Barely wake up and it's already blaring away. Anyways hang in there I don't get on much but I frequently log in to see how everyone is doing. We will get through this <3
    gameover
    Reactive tinnitus is the worst shit yes.
    Sammy0225
    Wow hope everyone is okay! As always still hoping for a cure
    Thizzle
    How are you doing
    Sammy0225
    @Thizzle thanks for asking man I appreciate it I'm doing okay for now after being home bound for two years I'm driving daily now and going places there aren't loud. Healing at a snails pace
    Moni97
    Hey @Sammy0225! Been forever, how are you doing??
    Sammy0225
    Omg it's been too long!!! Hope you're okay!! I'm doing ok I'm back in the world I drive now and go too a few places I'm still dealing with navigation but it's ups and downs/ how have u been!?!
    K
    Hey, I'm 3 months into T that has developed into reactive/spiking from conversations-level volume in the past 2-3 weeks. How did you go about with your exposure therapy in the beginning? If I even put on white noise on my phone with the volume 1 button press above mute is enough to spike me.
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    Sammy0225
    Use a fan on low. That's what I use. As for recovery I'm not fully recovered but I can tolerate more without the reactivity being easily agitated. For example I can drive now with no ear protection and not spike. It takes time
    Sammy0225
    My best advise is get your mental health in order and give it time cause that's the only healer @Kiro
    Sammy0225
    Also nervous system plays a big part in reactive tinnitus the more control you have over your nerves the calmer the reactivity will be. Lots of trial and error

    Cheers
    Sammy0225
    Able to drive my car with no reactivity issues. Thank god. Took 2yrs. Hope yall are ok
    gameover
    Nice. Did you ever have nox?
    Sammy0225
    @gameover how have you been? In the beginning I believe I was pushing into nox deep stabbing pains.
    gameover
    I've been doing somewhat better/stable, but have terrible setback now, and increased nox and lower tolerance to speech via speakers which I did not have problems with before. Sucks.
    Sammy0225
    Reactive Tinnitus needs to be tackled with natural white noise and very carefully
    View previous comments…
    gameover
    Why white noise?
    Sammy0225
    Sorry the late reply guys I'm
    Hardly here @gameover and @Jupiterman. I use the water faucet and things like the fan I started low and gradually built up more over time. The reactivity slowly started adapting to it.
    Sammy0225
    I still have reactive t but it's not easily triggered anymore unless I hear a lawn mower or leaf blower then I get a flare up for 24-48hrs
    Andrew40
    Hello! It was nice to read that you are feeling better..Did you actually have reactive tinnitus, were you able to go outside during difficult times? What helped you the most?
    Sammy0225
    Resting my ears in quiet environments and slowly exposing. Sorry late response I hardly visit as often anymore
    Sammy0225
    Diagnosed w/occipital neuralgia. Covid kick started causing reactive T and light sensitivity. Neck stiffness and pain. Hope everyone is ok
    View previous comments…
    cjbhab
    can you tell more about your symptoms? when i google online everything they say describes me. so much pain on my left side of head , ear, behind eye.
    ErikaS
    I was hoping you were keeping on the mend and doing ok! I am so sorry to hear this. What can they do for the ON? Was it from a recent bout of Covid? Are you back in ear protection? Hugs <3
    Tryn2BHopeful
    Occipital Neuralgia can cause T, I think they confirm it my doing a lidocaine block on the nerve and if the pain stops then its the cause.
    Sammy0225
    I'm out of here guys. I feel like I shared everything possible that helped. Wish y'all the best. Take care
    ErikaS
    I will never forget your friendship and support through my darkest days. Drop a hi on my feed if/when you ever come back. :)
    Sammy0225
    @ErikaS hi love I popped up to see how y'all are doing I'm glad I helped you And you also helped me. I'm forever grateful for your friendship here on TT. Currently I'm okay. No big changes reactive tinnitus still hanging around I'm taking it day by day. All my best

    -Sam
    Sammy0225
    I'm alive.living life. Several loud exposures. Just don't give a shît about em anymore. Kids are keeping me busy
    View previous comments…
    Sammy0225
    @ErikaS my heart is always with you my friend I'm glad to hear you're making progress with the mental aspect I would say just keep at it and remember we are gonna have good and bad days but we will always take it one day at a time <3
    Sammy0225
    @kingsfan same here my friend!! The government did a signal test late night on the tv which unfortunately blasted a loud sound I covered my ears quickly but unfortunately I'm in a setback because of it. My T is really loud right now but as always I'll fight through it! It's not going to beat me
    kingsfan
    @Sammy0225 Oh damn I'm sorry to hear that. I actually got hit with an 80dBa tone from my dehumidifier a few hours after I replied here.
    SharonBell
    Who has tinnitus was caused from noise and are your hair cells damaged and do you have hearing loss? They said. Mine is from noise, I have bad hearing loss, but mine isn't in the speech frequency like needing a hearing aid. Mine is I. The extended high frequency when I got tested at tinnitus clinic.
    Forever hopeful
    @SharonBell I am not sure how old you are but it is expected that we lose higher frequencies as we age often by the time enter your 30s. There is much debate about this as a cause of T since those frequencies are not frequently part of our environment so it begs the question as to why the brain would seek to replace the missing frequencies if we are not exposed to them often.
    SharonBell
    Sammy please don't forget about me to explain the hyperacusis please.That way I will know if I have that also. Isn't their other ones or something else like hyperacusis seems like I saw it posted, but can't remember the name.
    Sammy0225
    @SharonBell Sure,Hyperacusis is a condition in which the ears become highly sensitive to sound. Personally, I have experienced the onset of hyperacusis, and it has had a significant impact on my daily life. Simple things like the clanking of metal utensils or the sound of coins hitting the floor became extremely discomforting to hear, almost as if I had been exposed to a loud gunshot.
    Sammy0225
    I noticed that higher-frequency sounds tended to agitate me even more. The sensitivity was so intense that I couldn't even tolerate running a fan on its lowest setting. If you're experiencing any of these symptoms, it's possible that you may be dealing with hyperacusis.
    Sammy0225
    At this current point and time reactivity, is behaving and my (H) LDL is reading about 88DB. I'll keep posted on new developments
    Joshua Macleod
    Fantastic to hear, man. Colour me curious, how do you assess your LDL without exposing yourself to those levels? All the best.
    Sammy0225
    @Joshua Macleod hi bud! So I downloaded a Decibel reader on my phone I reset the highest (reading) to zero and begin quietly saying the word "test" then I say it gradually louder until I usually hit a 88DB reading I'm sure I can hit a 90DB reading but I don't wanna risk it just yet
    Sammy0225
    No H today ..hardly any T … and 0% reactivity.. sleeping 9hrs fan on full blast white noise (bed side)
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    Sammy0225
    So far so good. Running the fan on high running the AC unit 9ft away on low "cool" And the tv at 5 volume. @ErikaS at some point we have to try something love <3
    Stayinghopeful
    So happy for you!
    4Grace
    This is incredible news. Sounds like a miracle but came from a lot of hard work. I am so happy for you. What a dream. :)
    Sammy0225
    White noise has built my H tolerance. It's taking more noise to spike my T. Keeping close tabs on it.
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    ErikaS
    Those next mornings, my T seems quieter in the AM, quieter during the day, and maybe not as reactive. Idk. Maybe we are at a point in our recovery where we are ready for the constant low level background noise.
    Sammy0225
    @ErikaS i would say stick with the baseboard heater. I noticed with the fan I'm using I did spike significantly the first few weeks but eventually I broke through a barrier where the reactivity wasn't so reactive. Even if it takes 2yrs of white noise I'm gonna keep at it.
    Sammy0225
    Sitting in silence only got me so far; I think pushing back into sound or some type of stimulation to the ears is warranted for recovery. I know lots people are against sound therapy but I'm fed the f#ck up. And it's doing something cause I'm slowly getting better
    ErikaS
    How is it going today? PS love your profile pic, so so cute!
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    ErikaS
    I am experiencing an awful worsening myself. It's like I have surround sound of all sounds happening in my brain with worsening reactivity. I wish I could try lidocaine into the inner ear just to see if it would work like it does for some people IV. I know its only temporary but we need SOMETHING.
    Sammy0225
    @ErikaS you're one of the strongest persons I know. Shit at this point I'm open to try that also. We've both missed out on so much the last 1.5yrs.. always trying to stay positive but there's only so much we can take
    SamRosemary
    @ErikaS @Sammy0225 I'm sorry guys. Seems to be bad times with this shit for a lot of us. We've had better days tho so we will get back there.
    Sammy0225
    Last nights gathering went smoothly. A few episodes of PTSD. I'm still working on it.
    S
    It's a nice feeling of normality when in reality doing something like that shouldn't cause worry. How T changes things. Hope you had fun :)
    4Grace
    @Sammy0225 i am sooo sorry to bother you. Yesterday I felt great talking to you. Like I was on my way. Honest. Today one of my worst days. What a swing. Every time I try to live just a little I get destroyed. I feel like I need to go hermit mode but cannot mentally manage that ..
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    Sammy0225
    @4Grace thank you my friend but please understand I never had the luxury of being able to mask my Tinnitus after 320 days I think my brain just said " fuck it" And got brief moments of being able to tune it out. Then grew more from there. You'll get there don't give up. I sleep like a baby with no masking so it's possible
    4Grace
    @Sammy0225 - thank you for your kind words and support. I think that's the problem. I have had to mask since day one. Even when I went for a walk outside. It's drives me insane. Now it's too loud for masking.
    ErikaS
    Yes, my SSHL was in ultra high frequencies in my right ear from an ear infection, so unfortunately, I always have some kind ultra high pitch going on, and it's reactive. Then I have other awful sounds that are down in 1000-3000 Hz that make no sense because technically I have no hearing loss there.
    4Grace
    @sammy0025 - what an incredible story. You are a true inspiration to me. Sometimes I get a boost of confidence from you guys. Is your T better then those bad days or do you just deal with it better?
    Sammy0225
    "Thank you, @4Grace Your words mean a lot to me! I overlooked your story. I want to emphasize that there is hope. During my darkest moments, I was subjected to a custom air-horn without any protection. At that point, I thought to myself, …'This is the end…Surprisingly, even that didn't cause permanent damage. So, please, keep fighting. I like to believe that it's a test from Jesus Christ
    Sammy0225
    @4Grace There are days, like last night, when I experience a distressing 10 out of 10 ultra-frequency dog whistle. However, over the past 15 months, I have learned to tune it out most of the time and still sleep peacefully. Months ago, I made a firm decision that suicide was not an option, and since then, the power it held over me has diminished.
    Sammy0225
    And then there are days like today when it's non-existent. So, I embrace the good along with the bad. :)

    Headed to a Halloween get together in a bit a year ago I was living in my restroom. I hope this brings you hope
    Sammy0225
    I'm gonna leave tips on what I did to heal some of my symptoms Incase I disappear one day and someone needs info. I'll start with (TTTS)
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    Sammy0225
    So, the impact of these conditions can vary depending on various factors. I'm grateful that I was able to identify the root cause of my own experiences, and I sincerely wish the very best for anyone who is suffering from this condition. It can be incredibly cruel and unforgiving."
    D
    @RunningMan Yeah, MEM episodes thankfully stop after some time. The first few months for me, there were times I had it for 4-7 hours - 1-2 times a week. But now it usually happens for 1-2 hours 3-5 times a week. It also shifted from hiccups to yawning triggering it. I don't know if it's an improvement. This crap is a mystery. (We had talked about this in another thread btw)
    RunningMan
    @DimLeb Indeed, I remembered that when seeing your earlier comments. Since then, the spontaneous thumps seem a little more frequent, but don't last as long, maybe minutes, I try to focus on something else. They do seem triggered sometimes by muscular movements of head or jaw at any time of day, except I don't think they've ever started during exercise (with or w/o earplugs) or watching TV (with sound).
    Sammy0225
    Incredibly low tinnitus today. Such a rare thing to experience. If only every day was like this
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    Tryn2BHopeful
    So oddly some of my best T days are the day after I go to my sons football games on Friday night. Its noisy as frick, I wish I knew what it was doing.
    Sammy0225
    @Tryn2BHopeful yes mine was actually some what the same. I also wish cause then habuitaion could be 100% accomplished more easily
    4Grace
    @Tryn2BHopeful - some of my major noise traumas improved my T for the better. I don't think that's the case anymore.
    Sammy0225
    Spike sub-sided. Able to tolerate TV,AC, Fan and my kids all in one room again. Just tired..so damn tired (15 months)
    ErikaS
    Glad it subsided, but the exhaustion is so understood. Praying for spike free days/months ahead.
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