billie48

billie48

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  • F
    Have constant 24/7 head tinnitus almost 6 years. Over the years my tinnitus fluctuated from roaring to hissing, generator and sometimes with clicking in the tinnitus left ear. My body is in constant fight and flight and don't know how to get out of it. I pray to God every night for some relief. I still live my life, travel and enjoy my family but want habituation.
    L
    Start doing CBT you will get some kind of benefit maybe minimal, maybe significant , but even a minimal improvement in your mindset is beneficial.
    delta784
    Hey billie my tinnitus becomes severe on 24.10.2024 for no reason after fleeting tinnitus attacks twice last episode was in 26.10.2024 i am not sure if this was some sort of sshl or fleeting tinnitus or sbutt but can this get better? before that i had mild dysacusis and moderate tinnitus atleast it was liveable now it sucks so bad because my right ear constant 15.000 khz no hearing loss up to 16.000 khz
    billie48
    Thanks for contacting me. I think you should see an ENT to rule out any problems with the ears first. Without a medical issue, unstable ears tend to settle down after a while and your conditions may improve. That is only a general assessment but I am not a doctor, so it is best to seek medical opinion first.
    matt89
    Hi Billie, just wondering when you experienced your first hyperacusis years ago from which you recovered, did you also have any muffled hearing sensation (everything sounds more dull or like you think you are missing some frequencies) along with ear fullness?
    Thanks, appreciate your reply.
    billie48
    Yes I had all those other symptoms too. Don't worry, as hyperacusis slowly fades, these symptoms will slowly fade too. Take care. God bless.
    matt89
    Thanks @billie48. May I ask what was the cause for your T&H? Haven't found it in your success story thread.
    billie48
    Most likely from acoustic trauma by repairing a faulty smoke alarm without using ear plugs.
    billie48
    @4Grace, thanks for the kind words. During the worst time, I wore ear protection. I did gardening and fishing in quiet place to have fun too
    Andrew40
    Billy, I hope you are doing well now. I have catastrophically reactive tinnitus that was felt in my ears. Now half the sessions of cranio-sacral therapy it is felt in the head and it is much worse subjectively. What can we say about this movement of noise? Have you had this happen, was your noise REACTIVE?
    billie48
    Like I replied before, I had 2 episodes of hyperacusis. Every normal sound seemed too loud and hurtful. I had to wear ear protection initially and stayed in quiet places. It was a nightmare. But in the 2nd episode I was more daring to confront the sounds. I didn't worry about it as much, knowing it would go away. Perhaps post your conditions in the hyperacusis forum for more support from others. God bless.
    4Grace
    @billie48 - I read your story again. Wow! You are incredible. I also have incredibly debilitating reactive T. I try to do things I enjoy. When every little sound worsens you how do you find a way? I have been home bound for a week. Had a few days in complete silence.
    4Grace
    I was feeling one percent better, just a moment ago my iPad fell of the bed and caused me another massive worsening. Isolated for so long only to get worse. I love your idea about getting back to some sort of life. I tried so hard to do some of the things I loved. Loved protected walking but now that destroys me. No rules for improvement seem to apply to true chronic reactive T, H and N. God bless you.
    Andrew40
    Sorry to bother you..I have extremely reactive tinnitus which for some reason has been getting worse continuously over the last 8 months.
    Now it began to be felt not in the ears as before, but in the head. Because of this, it became louder by 30 percent...
    Billy, please tell me what you think about this?
    billie48
    I had 2 episodes of hyperacusis which lasted about a year each time. Reactive tinnitus may be a less intense form of hyperacusis. I tried to protect from loud noises or loud venues at first, then progressively cut back on protection. It is a hardening process to train the brain to get used to sounds. Hang in there. Time will help heal hyperacusis for many people.
    Utdmad89
    I love your positive description on how you have managed to overcome intrusive T! And get back to enjoying life.
    billie48
    Thank you. Glad that you find it helpful. Positivity is always helpful to reduce stress level, which then may help to calm tinnitus in the long run.
    4Grace
    Putting the head set on makes me depressed since any type of hearing protection makes my T super sonic. For a family dinner, walk on the beach, can I do without the hearing protection? I have to mask all day even when outside for a walk. If I can cope with spikes, at the moment I cannot, can go without protection? Can you do a loud windy beach now that you are habituated?
    View previous comments…
    4Grace
    I have custom musicians ear plugs. The occlusion drives me insane. The sound of my body is loud. If I cover any of the outside noise the loudness is unbearable
    Bimmerboy
    @billie48 hey, on both occasions did you have pain hyperacusis( stabbing/burning) or loudness ?
    billie48
    I did have fleeting stab of pain but not a daily thing.
    4Grace
    If I can participate in these occasions I think I can get my life back problem is my T is getting louder by the day. I have a little girl who has charge syndrome. She screams every day. I put on ear muffs but it does not help much. The other day I went to the beach. It was very windy.
    4Grace
    I don't mind missing concerts and loud events. However getting together with friends can be a loud event. Missing out on life is a tough one for me. My friends are going away for the long weekend. When we get together playing cards it can get loud. I want to go but I am afraid.
    View previous comments…
    4Grace
    It's been 8 months. I ha hopes that it would get better. At first I had better days. Now every day worse. Does not matter how much I try to protect many times a day I am around some sort of noise. I have had to take a leave from work. I have seen many a doctor. Protecting my ears while out is close to impossible for me. T is blasting with them on plus talking and chewing or so did my body is super loud.
    4Grace
    Benzo's worked best but not good for long run. I am desperate. I had the hearing loss on mirt but actually thinking of giving them another try. That's how bad it is. Zoloft made T worse plus restless legs. Ciprilax went insane.
    4Grace
    Sorry for long post. God please help me. I have lost joy in all that I loved. This has consumed me.
    4Grace
    @billie48 Hello, thank you so much for your detailed success story. Most inspirational story I have seen that has actually given me some hope. I would so appreciate your help.
    billie48
    @4Grace , thank you for the kind words. Glad the success story has helped you. I am not an expert on tinnitus but I can share my experience, hopefully this can help you. God bless.
    4Grace
    @billie48 - I deleted my profile posts because I did not want to have negative stories on here. To be honest though I am suffering a lot.
    A
    Hey @billie48 I got Tinnitus about a year ago (January 2022) I guess due to taking a ton of painkillers from knee surgery, stress, and anxiety constantly my whole entire life. I was sitting on my chair doing an internship with a company while in College and a screeched came out of nowhere and thats how it started...
    billie48
    Hope your conditions will improve which is possible if we are more accepting of the new normal.
    L
    @billie48 Hi, how are you currently doing? Was your tinnitus ever reactive and if so, did the reactivity go away over time? Did the tinnitus also reduce in severity at the same time your hyperacusis improved? Did you ever have ear aches with your hyperacusis? Thanks
    View previous comments…
    L
    @billie48 Also, were you working a job while dealing with the severe reactive T and H? Right now, I'm not working. I miss doing it but I worry about possibly making the T and H worse by going back to work.
    L
    @billie48 I've been looking into possibly making a career change that could accommodate my circumstances better. Not sure if there are any jobs outside the home that won't have some risk involved though. But maybe I could try to find a job that I could do remotely from home in a quieter environment.
    billie48
    About protecting the ears, it is often suggested that we need to be exposed to normal ambient sounds of the environment. But each person's sound tolerance is different. I think if you can afford it, taking a break is a good way to have less stress. Again career change to a less stressful job is a good idea if you can afford it.
    TLion
    Hi @billie48,

    I was inspired by your success story. What does loud tinnitus mean for you? Mine is so loud since my worsening 3 months ago that I cannot concentrate, work, function. I cannot image how to live like this.
    How long did it take you to have a day where you could see a light at the end?
    I'm dependent on low dose Xanax right now to survive because it quietens tinnitus a bit.

    Greetings,
    Daniel
    billie48
    Loud tinnitus was devastating to me the first time it happened more than 10 years ago. I had relentless anxiety and panic attacks daily and i had to depend on medications to survive. It took me 2 to 3 years to feel more normal bit I consider myself a tougher case than others because of my prior history of suffering from anxiety and panic disorder plus PTSD.
    Jonnie
    Hey Billie, really appreciate your positivity! Fellow Canadian here, also in the IT field! (but haven't been able to work because I haven't gotten the T under control yet.)

    Let's be forum friends :)
    billie48
    Thanks Jonnie. All the best to you and your IT career.
    E
    What can you eat everything triggered my ringing. I've tried cucumbers lettece rice
    billie48
    I wish I can help but I have no experience nor knowledge about foods causing tinnitus except some people complaining about MSG, caffeine, gluten, too much salt etc. Please post your question in the main support forum so more people can comment on it.
    4Grace
    @Elles - food same thing with me
    K
    Do you have any suggestions on what can be done to calm the nervous system: ketamine? NAD infusion? Stellate nerve block? I am new and trying to just calm my nervous system.
    billie48
    I don't know much about those treatments you mentioned. I think the common approach to calm the nerves is to do calming exercises such as outdoor leisurely walking, light jogging. Try also deep abdominal breathing.
    M
    Hi! How long did your setback take?
    billie48
    There is no setback much in this 2nd episode emotional wise. I know what to expect like hearing loss, hyperacusis, loss of balance and loud tinnitus. Just accept them and move on knowing time will help and it did as I am used to the new normal now.
    D
    I took oil of oregano and it is louder now. Are you better from second episode to left ear?
    billie48
    Yes the 2nd episode is much easier emotionally to handle. I gradually habituate to the new tinnitus. But the hearing on left ear has not come back. Thanks.
    Jeff M.
    Hi Billie,

    Long time to talk. I've been on hiatus. How are you?
    Damocles
    billie48
    Hi Jeff, I suffered sudden hearing loss on my left ear last December. But life goes on with me. Have been busy with gardening and fishing despite what the ears and tinnitus want to do. Lol.
    superworm
    Hi billie48, thanks for your message on my thread. I didn't '@' you in my reply - sorry!

    I'd be keen to know more about yourself and your experiences with T.

    Cheers
    Vj926
    @billie48 i read in one of your posts that tinnitus induced by neomycin can eventually go away. As you mentioned, its hard to predict when, but it is good to know there is hope that it might go away. Have you seen people who have recovered from neomycin induced tinnitus? Thanks for your time
    porcelainblue
    Hello kmohoruk! I am a new member so cannot private message.
    I am based in Vancouver, BC. Based on forum posts, it seems you are in the Lower Mainland as well?

    I've had tinnitus for 2.5 weeks and am trying hard to find resources. I am mainly looking for an audiologist but if you have GPs or ENTs to recommend, please let me know!

    Thank you very much :)
    billie48
    Thanks for contacting me but I am not sure if you mean you want to talk to Kmohoruk. But you may want to check out the tinnitus clinic at St. Paul Hospital which offers treatment service. The wait time may be long if using MSP provincial medical plan but you can pay to see them faster. Here is the link to their site:
    http://www.providencehealthcare.org/tinnitus-clinic
    porcelainblue
    Sorry, I meant you :) I was copying pasting that message to as many Lower Mainlanders I can find. Tinnitus is a very lonely experience so I am keen to build a support network!
    How was your experience with the Tinnitus Clinic? I thought they only did CBT.
    E
    thanks billie, I can't reply to your PM for some reason, but I did post in the thread you made that has given me inspiration.
    billie48
    Thank you Eric. You may have to wait a few weeks for your PM to work as this is a policy of the forum for new members.
    Rogi Cetpla
    Hi Billie,

    I would like to mirror Zigs compliments and questions.

    Wishing you all the Best,
    Rogi
    billie48
    Thank you Rogi. You are so kind. All the best to you too.
    Billie
    Zigs
    Hi Billie

    Sorry if you have already answered this, but I found your amazing post from 2014 and found it really helpful. Just wondering why you have stayed active on the forum if you feel better able to cope? Is it just to help others? That's amazing if so x
    billie48
    Yes Zigs, I stay behind to help others out of compassion for them. Hope others don't have to suffer as much. That is my sole purpose hanging around.
    COYS
    Hi billie. I'm 7 weeks into T H and TTTS through acoustic trauma and your story gives me a lot of hope. How did you get your T and H?

    Thanks
    billie48
    Hi COYS, glad that my story has helped you. I am unsure of the cause. Could be acoustic trauma.
    COYS
    Is your H now completely gone? My pain is slowly going away but my ear clicking is still there
    billie48
    No, you need to click 'start a conversation'. This is profile message which is not private chat.
    RobertFahey
    Is this the mechanism for having a one-on-one conversation?
    View previous comments…
    RobertFahey
    When I click on your name in my intro thread, I see Billie48, Male from Canada. I see five light blue links to click on: Profile page, Follow, Ignore, Find All Posts and Find All Started Threads.
    billie48
    I am not sure if this is due to the newness of your username. You may want to ask others about this issue in the main support forum or better yet search out @Markku to ask him if there is a condition for starting a conversation.
    billie48
    Yes, thanks to @Contrast's clarification, new members can't do PM right away and that is why you don't see that option.
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