Juliane

Juliane

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  • B
    Have you tried Chatgbt? I have recently discovered Chatgbt and found that it was helpful and informative. If you lay out your tinnitus symptom history, including a description of the intestinal issues that you are encountering, it will provide you with detailed explanations and prognosis and a multi-step plan for addressing your issues.
    B
    I suspect that your gut issues are associated with stress as opposed to being directly related to tinnitus. I used buscopan to relieve IBS. I have recently found that magnesium glycinate has relieved a lot of anxiety associated with my tinnitus and reduced cortisol. This has beneficial effects for sleep and probably stress-related gut issues.
    Juliane
    I hope all is not lost. Atm focusing on improving my diet. Not sure what I want with this update, I guess just let you know that I think of you and I feel that, for me, all that hit me in recent years (T, eye floaters, depression, anxiety) is somehow linked to my gut - or vice versa. At least I know I need to change my life.
    Juliane
    Dear friends. Thinking of you. I don't check in a lot here atm since debilitating gut issues have completely taken over my life (T still there as well). I am starting to wonder if bad gut health is somehow linked to T as well. I even read that depression and suicidal ideation can alter your gut microbiome and oh boy have I been guilty of both since my T worsening in 2023.
    RunningMan
    Sorry to hear you are going through that. I can relate. I have intermittent stomach discomfort and pains specifically, but for me, it started about 1 1/2 years after my T got severe, immediately after starting SSRI's, which I stopped after 8 weeks, and the problem never went away. At a later date, Buspirone seemed to trigger more pain after a couple weeks, so I stopped that.
    RunningMan
    So, serotonin appears to make it worse. The gold standard for treatment of neuropathic stomach pain is Amitriptyline, which.... wait for it.... increases serotonin. :( It's intermittent pain with me but is definitely debilitating on the painful days, as if severe T wasn't bad enough.
    Juliane
    The moment I start living a bit more, everything goes to hell
    Kam75
    Same for me, same for nearly all of us here :( Two years ago I started living almost normally, going to bars and clubs, as I felt better. But now I'm living a nightmare... Tinnitus increased because of that. I have sleepless nights every nights. This conditions always reminds you that your life will never be the same. We have to forget our social life forever...
    cjbhab
    you hit it bang on. I was feeling pretty good in April/May - started doing a few more things - bang head hurts bad and in a long spike now.
    B
    Hello. I took a couple of hours to review your messages today. A horrible chronicle but so relieved that you found the strength to carry on.
    ECP
    @Juliane How are you doing? I hope your medical procedure went well and that you didn't spike.
    Juliane
    @ECP Thank you so much for checking in on me. I went through with the medical procedure without any sedatives or Xanax which I never thought I could, but I managed. My fear of disrupting my GABA receptors was too strong so I endured the procedure without any "help".
    ECP
    That's wonderful! It must be a relief to get that taken care of.
    Juliane
    I find it difficult to put into words how much I hate this horrible disease. My hate for tinnitus is deep and all-consuming. It has stolen so much life from me and I will never recover from that loss and pain. Never.
    dreamer16
    Me too. I hate it. Another night of going to bed with a high-pitched whine. No silence, no true rest, nothing.
    Juliane
    I have made up my mind. I will not take a Xanax or other benzos before my medical procedure. The risk of a spike not worth it. Now I need to find a way to calm myself enough to be able to go through with the procedure.
    Juliane
    One and a half year after my T worsening I developed chronic stomach issues. Is this normal? Has anyone tried anything similar? I think my T caused my now debilitating stomach pain
    View previous comments…
    L along the way
    Hi @Juliane, sorry to read that. Strangely enough i've also had issues with my bowels... I'm taking psyllium fibers now, which helps. Also switching to a plant based diet has had very positive impact for me.
    L along the way
    What you write about the nervous system.. i also believe that spending time in nature and getting plenty of rest are very helpful.
    L along the way
    But i also wanted to mention kratom, i sometimes use it to unwind a bit. It's legality differs from place to place i've read.. and it can be addictive.. but just from personal experience, i found it to be of benefit from time to time. But just don't get addicted, and use responsably as they say.. anyhows i hope you may feel better soon. Love
    Juliane
    Dear all,

    I need to go through a medical examination that's necessary - a sigmoidoscopy. I am terrified. To get through it, I consider taking a Xanax, aka Alprazolam before. Do you think one Xanax could worsen my tinnitus? Any advice? Thanks so much!
    View previous comments…
    Juliane
    kingsfan
    @Juliane I haven't been well the past few weeks. A couple noise traumas, that really shouldn't have been that bad, have made things worse but I'm trying to push through. I hope you are well.
    Juliane
    That sounds really tough @kingsfan :-( You deserve to be happy! You always send out such good vibes here. As for me, life just keeps throwing tough stuff my way :-( I don't get it.
    Juliane
    How are you all doing? Life is tough on me atm. Hugs to you
    henkess
    Sorry to here that, hope it gets better :) i´m struggle to with tenstor tympani syndrom
    adpolandam
    Hey. Nice to see you :) I don't feel well, I would say it's getting worse. One day we'll meet, all the sufferers on the other side:) We'll have a big party. There'll be loud music, fireworks and screaming, and we won't care :)
    vilebubbles
    How are you doing?
    Juliane
    Sorry for my late response. I am not always checking in here. I am atm not too good. Stomach issues in addition to T makes life hard. How are you doing?
    Juliane
    How do you guys handle flying with T and H? Does it worsen you? Any tips or precautions? Thanks in advance
    cjbhab
    Noise cancelling headphones with light music playing - or if it is still too loud. Earplugs with noise cancelling headphones on top. Have had pretty good luck. I fly 2-3 times a year from Canada to southern California.
    Juliane
    I keep disappointing other people in my life. Would be so much better if I was not here anymore.
    View previous comments…
    L along the way
    For me, socializing can be nice sometimes.. but it depens a lot.. about with who, and in general i try to focus more on my own wellbeing.. i don't think that's egocentric, it's trying to meet your own needs first. Take it easy Juliane
    4Grace
    Julian - all I can say is that you are not alone. I can try to do things and it's not fun to have me around. So, I get in trouble. If I isolate due to pain and worsening I am mentally ill. Can you believe my family still thinks I'm exaggerating. I am getting grief for not going to my families Christmas party. 26 people. They say in need to compromise.
    U
    Other people's perceived disappointment is their issue. I just disappointed my wife. Tough shit. Are you feeling any better now?
    Juliane
    Fellow T and H sufferers: how are you handling Christmas? (If you celebrate) Will you run the risk and join family gatherings or self-isolate? Not sure what I will do. All seems impossible rn.
    Juliane
    Last year in December I thought I had it bad. This shit just get worse and worse with no end in sight. I will quit my job in the beginning of 2025.
    4Grace
    It's true. It's seems it keeps getting worse no matter what I do.
    Juliane
    We are all different. But for me, thinking positively and becoming hopeful tends to destroy all progress. I need to get back into being constantly depressed and fearful and isolated. All that matters is protecting my ears. All else is worthless.
    Juliane
    My tinnitus has introduced a new horrible screeching sound on top of the usual sound torture. I knew it could of course always become worse but this is beyond horrific. I might need to quit my job now.
    TheCapybara
    I'm sorry you're not doing well lately Juliane. Did the worsening happen out of nowhere or was it another accoustic trauma?
    Juliane
    @TheCapybara I am not sure. I think I have made the classic mistake: become more complacent after a brief period of more manageable tinnitus. Accepting too many invitations for socializing. Nothing crazy, just lunches and coffee basically. But even minor socializing is off limits it seems. I am devastated.
    Juliane
    Happy first Sunday of Advent. My day will be spent in bed suffering and crying
    L along the way
    Love sister, i understand you. I don't know why life has to be like this now.. i also don't have any real answers.. hope for a better day.. but sometimes that also doesn't work. I hope you find relief, that things may be well some day please.. i think we are doing the best we can in this ridiculous situation.. pff.. love & healing
    LukeYoung
    Sending love and healing to you, i find being in nature, around local parks with people, dogs, children, the breeze, they can help lift spirits a little.
    Juliane
    I have had some relatively good weeks prior to this but as always in my life, good times (or now, relatively good times) will be punished with horrible times. Back to square one. Starting over, feeling defeated and without hope again. It does not help that I have accumulated other chronic health issues, probably due to the T ruining my nervous and digestive system with its relentless torture. Terrified of the future.
    R
    Im 5 and a half years in. Not sure your history but ill let you know, spikes suck and are scary, but they do pass. I've had spikes in various degrees of terrible and scary, but they always tend to calm back to baseline. Eventually you start to go oh, dang, and then you just move on and ride it out knowing it will pass. I know it doesn't seem that way but, you'll get through
    R
    I had a terrible spike that lasted a few days, really loud. That was due to noise. I had a spike last a month due to nasal spray. But they all passed.
    Juliane
    I cannot do this. Feeling Suicidal again due to horrible spike.
    LukeYoung
    You can do this, you've gotten through it before! Stay strong, keep distracted, it' will be hard to not focus on it, but you must try
    Juliane
    I find it hard to describe my hate for this condition with new words. Feel like I used them all. It sucks life out of you and leaves you empty and bitter.
    Juliane
    Once again finding myself in a situation where I might need to cancel my participation in a close family member's birthday due to this shit. I know they will be disappointed and I feel like crap for cancelling. But this disease spares no one and could not care less about your life and happiness.
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