Hamsti

Hamsti

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Member 36 From Rhineland Palatinate, Germany
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  • Hamsti
    What I really want to know: Why some people develop one or two tones while almost deaf and I develop a shitty marching band inside my head?
    View previous comments…
    Christiaan
    And though it may not seem like it, but time is on our side as we're on the cusp of many bio-medical and technological breakthroughs, such as Ebselen, new tDCS applications for tinnitus (at Regensburg university and at Antwerp Medical Hospital if you're interested), FX-322 trials that could take place in Europe in 2022 and Susan Shore's device could very well be commercialised in a year or two (fingers crossed!).
    Christiaan
    There's definitely so much to hope for .And if all goes well, you won't be hearing bagpipes in a few years or so:)
    Hamsti
    Thanks @Christiaan. Your words are always kind and hopeful, that really helps me.
    Hamsti
    CT done to check my middle ear and tubes...anyone heard that curing ETD leads to curing tinnitus?
    Hamsti
    Sometimes I ask myself how my ton-of-tones-tinnitus will be able to treat with deep brain stimulation in the future...
    Christiaan
    I remember the story of a patient who had multi tonal tinnitus and mentioned that DBS (Cheung, et al. 2019) helped her tremendously. Here's a vid of her testimonial: https://vimeo.com/340421200
    Christiaan
    Maastricht University is one of the few institutes in Europe that is currently working on a new DBS treatment, but god knows how long their current trial will take. Maybe in 2 years or so, we could know more if it's effective or not
    Hamsti
    Found the best ENT! He talked with me for about an hour. Rarely seen here in Germany :D
    View previous comments…
    Hamsti
    @nocticolor, in Kaiserslautern, ist das weit von dir weg? ;-) Der Herr ist sogar Professor und hat auch schon mit der Tinnitusliga zusammengearbeitet
    nocticolor
    Ich komm aus dem Raum Stuttgart, also nicht allzu weit, falls es sich lohnen würde :D Hat er denn irgendwas Interessantes gesagt? :)
    Hamsti
    Naja, ich hab seit meinem Onset immer mehr neue Töne entwickelt und das macht mir einfach ziemliche Angst, weil ich auch nicht weiß wo das herkommt. Er meinte, dass das die postnatale Depression ist und man die zuerst behandeln sollte. Es sollte dann weniger werden. Ich hab mich jetzt mal für so ne Tinnitusklinik beworben, vielleicht klappt das ja.
    Hamsti
    Third mental breakdown of the week. Its getting worse and worse, I can't take it anymore.
    View previous comments…
    kingsfan
    I'm right there with you. It's rough. Hang in there.
    Stacken77
    Hang in there dear @Hamsti. I completely understand the despair and hopelessness. But you are strong enough. We have to persevere, it's our only option. We have to look towards the light and hope of better days.
    Hamsti
    Thank you guys. Yesterday I saw a different ENT, who said I never should have tried prednisolone in the first place, because I also suffer from depression and it makes that condition worse. I also took a lot of Ibuprofen before the treatment...you know my concerns now. I'm tired of trying things, I'm sick of it.
    The only positive thing here...my english improved a lot since my T onset because of this forum x)
    Hamsti
    I really like the bagpipe sound in my ear! Isn't that weird? My lovely, very talented brain <3
    Keith Handy
    Single note or melodic?
    Hamsti
    @Keith Handy melodic. My tinnitus got melodic 4 weeks after onset. I believe I developed Musical Ear Syndrome. But the bagpipes are new, since 2 days.
    Hamsti
    My ENT said, when T is fluctuating, it's not chronic yet. Opinions?
    View previous comments…
    Vassili
    Mine also fluctuates. It's been 19 months already. For example, I can have 6 very silent days in a row and then 3 bad days and after that one day almost without any symptoms (like 1-2% of volume). Go figure it out))). I just hope it will go away completely after few years. The fact that I don't have any hearing loss gives me hope.
    ASilverLight
    I've had fluctuating tinnitus for 1.5 years so I'm not entirely sold on that
    Diesel
    I'm going on 2.5 years. One day it's stable, one day it's loud, one day it's quiet, and other days it varies in loudness/sound by the hour. I'm not sold that any doctor can point at a specific time to a person's tinnitus onset and say it has reach a "chronic" state reliably.
    Hamsti
    I came to the point that I am jealous of all the success stories.
    Keith Handy
    I only read the ones where it takes a long time for them to get better. The quick fix stories don't help much.
    Stacken77
    Yeah, I can relate. My case has become really bad so I can't relate to most success stories. Really hope this turns the corner soon.
    Hamsti
    Same here. Im in the "I fucked up my life and should end this mess"-mode right now.
    Hamsti
    I got prednisolone in a high dose, IV. I am afraid I made things worse. Can you please calm me down?
    Hamsti
    So back from the hospital. Tinnitus got worse, louder and added a few more disgusting tones.
    Stacken77
    @Hamsti I'm so sorry to hear that. Why did it get worse?
    Hamsti
    @Stacken77 Maybe because of the high dosed prednisolone they gave me. I wanted to give it a try, but now I regret it so much.
    Hamsti
    Can someone explain to me why my tones in my ear keep changing and becoming more and more tones throughout the day?
    View previous comments…
    Christiaan
    ''Results revealed a time-of-day-dependence of tinnitus. In particular, tinnitus was perceived as louder and more distressing during the night and early morning hours (from 12 a.m. to 8 a.m.) ''
    Christiaan
    ''than during the upcoming day. Since previous studies suggested that stress (and stress-associated hormones) show a circadian rhythm and this might influence the time-of-day-dependence of tinnitus, we evaluated whether the described results change when statistically controlling for subjectively reported stress-levels''
    Keith Handy
    The circadian rhythm aspect seems particularly relevant. I seem to have a "calm period" in the afternoons that I can't magically call in any other time of the day. It knows what time it is.
    Hamsti
    My ENT sent me to the local hospital to get infusions...I am 5 months in, l'll give it a try.
    Jebbis
    What kind of infusions?
    Hamsti
    First cortisone and then something for my bloodflow
    Hamsti
    I am going to try a low cholesterol diet + statins. Maybe it works.
    Jebbis
    Regardless of if it helps your T, lower cholesterol will help your bloodflow:)
    Hamsti
    I'm afraid that a cure for acute tinnitus will be found ... because then there may be less motivation to find a cure for chronic tinnitus
    Hamsti
    Waiting for my T to settle...at the moment he decides to give more and more tones :/
    in_LA
    Do you still have musical tinnitus?
    Hamsti
    not really, there are sequences of tones, plus a rhythmic noise and other noises that vary depending on the mood of the day @in_LA
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