Why do certain people on tinnitus forums tell me it's all in my head"?

[Alugo6340]

I know it's in my head as in no one else can hear it but me. I just want to know why people tell me it's not actually louder at night it just seems that way. My tinnitus gets really loud at night. I know it's not in my head cause I can actually feel it in my head physically hurting me all most when it's super screaming loud. I cant sleep when it's that loud. When its low, I can sleep fine and i dont feel it physically. I know it's not cause of the lack of external sounds at night. It really is louder like way louder at night. Why do some tinnitus sufferers downplay others?

[Hidden]

It may well get louder at night. Mine does if I am having a histamine reaction. The increase in tinnitus sound is the first indication I'm going to have a reaction. Often that's at night, several hours after I've eaten. But it happens in the day as well, I am just less likely to hear it above normal daytime sounds. Have you ever thought about connecting foods you eat to your tinnitus levels, and keeping a diary?

I don't know why people do that. All I know is that everyone is different so they must simply not be experiencing what you are.

[Wringing1212]

Well, it's not a competition. None of us really know how our T will act tomorrow. Do we know if there is a way tell how loud it is?

What you need are answers but you are getting either empathy or rivaled. Just take the empathy and ignore the rivalry. Meanwhile, keep hope that their will be some answers sooner than later.

Actually, I've participated in this forum on and off for a couple of years and don't find many people even respond to my comments or questions. The social media format makes people act abnormal.(or is it's the new norm?)

When my T keeps me awake, it feels like there is someone here to talk to, although, I'm suspicious there is someone filtering the content. What do you think?

[Annie07]

I’m really sorry you feel like that, everyone experiences tinnitus differently. I really don’t know what to say, it’s hard when you have tinnitus but don’t know why youve got it. Does playing music or background noise help to sleep? I find that the experience of having tinnitus changes over time, like when I first had it was in my head more so, than it transferred to one ear and then other one. And now I have it in both. The noises have changed also but this was in the initial period when I got it, since those changes it’s been the same till now. It’s frustrating there’s no cure for it atm especially for those people that don’t have no apparent reason as to how they got it. I think people with milder form of tinnitus or those only had for a short while or those that have learnt to cope with don’t realise the struggle of other sufferers who have it even worse.

[Alugo6340 in reply to Annie07]

The thing is my tinnitus reacts to every word spoken like this undertone to people's voices on tv, I hear it with music too almost doesnt matter what type of music or volume. I was born with hearing loss but this didnt happen til 6 months ago after a cold. I had clicking noises everytime I swallowed and sinus pressure even when my nose cleared up and couldn't taste anything well for a month and the tinnitus relapse happened then and things sounded a little distorted since then. I had two other colds since then and my last cold was 3 months ago. I have allergies now so not sure if that cold of caused it or what. I took a hearing test and didnt lose more hearing and idk what ot is but its distracting watching tv and hard to listen to music now without hearing that whistling effect or tinnitus undertone whine in certain frequencies. It's been going on 6 months now, some days it's a little better than others. I got a CT scan too and it didnt show anything. No fluid in ears eighter when I got checked 3 months ago but I heard you can have ETD without fluid in the ears. Doctor didnt stick a camera in my nose but I want him too now. I wanna be able to listen to music and watch tv again. I know I didnt always have these distortions cause 6 months before this, I was watching movies just fine without hearing any whistling and it's the same with music. Since it's been 6 months , I fear the distortion part will never go away . It seems to go away for most people in 3 months or so but it hasnt for me and I'm scared. Music and movies would be a distraction to my tinnitus. I should mention hearing distortion when I see a doctor again cause I didnt last time and I'm not sure why. I wake up sometimes but not often with some ear pain that lasts a few seconds but not too bad. I get a ticking sensation in my ear sometimes but it could be allergies. What would you do in my situation if music and TV was a problem for you? Also if you see a post similar to this from me its cause I'm still looking for answers on what I can do about this distortion.

[Annie07 in reply to Alugo6340]

My tinnitus also started at a time where I was ill with a flu/ cold. I was told by the nurse that it would go away with the cold (it obviously didn’t). I don’t know why that it is, I feel there is too much ambiguity surrounding tinnitus, which is stress inducing in itself. I’m not sure in your case (or my own) the reason behind the tinnitus and I know that can be frustrating. Sometimes you have to stress the impact tinnitus is having on you for the doctors to do something, my referral to a tinnitus therapist really helped and maybe it’s something you can speak to your doctor about next time. I would advise you do tell the doctor about the distortion, maybe there might an underlying ear condition. Have you been referred to an ENT? What about ETD, is that something your doctor has spoken to you about? I am not a medical professional but it might be a possibility and there are treatments for that which you could discuss with your doctor.

With the music and tv, I can understand how that would be a major issue as it’s a source of distraction and relaxation (which you definitely need with tinnitus). What you’re describing sounds like hyperacusis (again not a medical professional so please don’t take my word for it), this is something that you should definitely discuss with the doctor as they could help you with that. I’ve heard of these ear pieces that make white noise and I think that could help. At one point, I thought of getting them when my tinnitus was really unbearable. I think it’s worth looking into if you already haven’t. I hope that helps and that things improve for you.