Hey guys. I'm Amy, I'm 22 and my current symptoms are: Tinnitus (both ears) Autophony (which seems to just be in my left ear) Hyperacusis. My nightmare began mid March. I'd had a bad head cold for a week, and my immune system is pretty bad anyway because I guess I'm not that healthy, and underweight, but I was in bed all week with this cold. My head hurt, my jaw hurt, and my left ear constantly started to feel blocked; as if I'd been on a plane and it needed to pop. Then about 10 days after my cold had started, and I thought had gone by this point, I went out clubbing with work for what must have been the second time in my entire life. (Never really been into anything like this, prefer to just stay at home with my family tbh) I got home at about 5:50am and my ears were ringing but I can't say I was too aware of it because I was so drunk. Redbull and double Vodka all night - hardly drink either so went straight to my head. I must have slept for about 2/3 hours and woke up at around 8am. My head was absolutely full of this awful ringing sound. I'd never experienced anything like it before. I was in tears, I was shaking, I rang my friend and could barely hear myself speak over it. Tried sleeping it off but I was shaking so bad. My mum kept reassuring me it would pass and that I just wasn't used to going out in clubs. It faded, for sure. But it's always constantly been there since that day. About three months later now and it's nowhere near as loud it was that day. A week following my night out I had a very nasty ear infection; Labyrinthitis, which led to, I believe, a problem with my tubes connecting my nose to my ears. I have Tinnitus both ears and the sound(s) change constantly. The overall sound I seem to get in both ears is a static-y noise; like an old TV out of tune. My left ear sometimes sounds like crickets, and my right sometimes is just a high pitched constant tone. Like I said, it changes, sometimes throughout the day. I think I'm coping with it a lot better than in the beginning. Although sometimes I get fleeting Tinnitus which is horrible where it feels I go deaf and my head is full of sound again, but this tends to settle down after a minute. Sometimes I get bad spikes as well but these seem to last an hour max. Touch wood. The best thing is when I'm at work I don't hear it at all. When I get home I do and it generally seems to be louder at night than in the morning, or if I'm really tired when I wake up it's more troublesome. What I can't seem to get used to or cope with is my Autophony. It. Is. Hell. When it starts I can literally feel myself and hear myself breathing in my ear, and even when I talk quietly It's like I'm shouting in to my own ear. I've never know anything like it. This seems to just affect my left ear and seems now to go on and off (mostly on) for most of the day. It only seems to help if I put my head down below my waist or when I'm lying down. I /hate/ it. I don't know if I have it because I'm underweight or because I don't have enough fatty tissues on my tube which I believe causes it? I'm seeing an ETD specialist next month and hoping they can help me, somehow. I have to have hope one day I'll wake up and it'll all be gone, some days I get so low I feel like topping myself. I just think, why me? I also seem to be a LOT more sensitive to noise which I believe is just something else that comes with the package. After much deliberation I went to the cinema Friday night because I figured why should I let this thing rule my life? I took my brother's noise cancelling headphones just incase it got too loud and I ended up wearing them for the whole time because it was uncomfortably loud and even with the headphones on I wasn't too happy about it. Probably won't go back in a hurry which makes me sad. I realise I'm writing a hell of a lot but I've never been on a forum to talk about it before and I'd love to know if anyone found anything to help. Especially regarding the Autophony, it's horrible, and I sincerely hope that together with the Tinnitus, it's not a friend for life. I take my hat off to every one of you that even has to live with one of these conditions. x
The Autophony is likely due to something with your cold opening one of your tubes. I believe this should correct itself with time but there may be a procedure available to help it. Pretty much the tubes that run from your inner ear to your throat are stuck open allowing that sound to come up into the ear, seeming really loud. I had this mixed in with H alot during the beginning, but have since faded away. (My Autophony usually only occurred when I purposefully popped my ears to relieve pressure and went away after popping the tubes closed, usually popped and unpopped by holding nose shut and swallowing randomly). I would recommend taking a look at the AM101 trials as you are a prime candidate, not a guaranteed solution to getting rid of T but its the best option we have right now outside of getting Trobalt/Potiga off label (which has the potential of some nasty side effects for a possible reduction in volume of the T). Hang in there, things DO get better, even if they may be driving you insane right now..
I can't even pop my ears for relief it seems to just make them even more full. I also constantly feel the need to clear my throat but to be fair I've had that for years but when I try now it seems to make me go deaf in my left ear, then I swallow, but then my tubes stay open. I almost think without the Autophony I could live with the ringing..... It's just horrible as it's not something I can mask, like the ringing. How long have you had it for and how did it start?
It would seem you have suffered an acoustic trauma. But there may be something else going on (re: your infection one week after and subsequent autophony). When it comes to tinnitus, knowledge among health professionals is generally limited. It may therefore be beneficial to have a read of some of the best treatment and diagnostic materials available - and - to bring it along for your consultation. The following flowchart was developed by the Tinnitus Research Initiative (TRI) - they are (world) experts on the subject: The chart provides a near exhaustive overview of all possible avenues to explore in terms of a diagnosis and possible treatment options. The full length pdf-file is attached. Conventional standard treatment for acoustic trauma is a short course of steroids during the roughly 48 hours following noise exposure and/or onset of tinnitus (= window-of-opportunity). You may (therefore) wish to try to consider enrollment with a clinical trial such as AM-101 or AUT00063 as the window of opportunity has passed (but there are eligibility criteria to consider with clinical trials). Avoid noise exposure; use earplugs as required; do not attend concerts. For the rest of your life.
I got mine back on April 4th from 5 consecutive loud bangs from my pistol at a shooting range. My friend had just shot a pistol that was louder than mine the same way and walked away unscathed but my ears were probably damaged from countless ear infections the first 2 years of my life. T is still annoying me but I think I can live with it given time and acceptance (if it were to stop improving every week). The Autophony ,being a mechanical issue, is most likely treatable, ive read of procedures online that can fix it.
I hope so, I hate it. What scares me about T is that it is so unpredictable in the sense you can have bad days and good for no apparent reason. I don't get people who can go clubbing almost religiously every weekend and walk away unscathed and then I go out on the odd occasion and end up with this. The day after I'd woke up with it, and that following week, was when I had a really bad ear infection so I'm not sure if that contributed towards my T in the sense maybe it weakened my ears (not sure if I'm talking absolute bull here, but just a thought). Also my Dad has had T for the last 15 years so maybe there's an hereditary factor to it? I get people who are like, "It could be worse, you're not dying." But I guess it's somewhat easy for other people to say it who don't have to lay awake at night listening to the constant never-ending sound.
Each human is unique. Unfortunately that means some of us are more likely to get certain conditions but from what ive learned about life is that nobody gets through life unscathed, there is always something a person must face. At least ours is mostly an annoyance and not life threatening. Heck we are still early enough along that ours is likely to go away within 6-12 months of the original onset or at least significantly reduce in volume or perceived annoyance.
@amybu22 Here is how I've done it: 1. What you will have to start with is survive. So don't worry too much about lost life quality, future career opportunities or not being able to attend this or that party. Just try to get used to get through the days. If you can do that, then you can hopefully start to rebuild your existence in small steps. A starting point may be to identify moments which are less painfull. 2. Protect your ears against further damage. Use earplugs around loud noise, make sure to insert them properly: Please note that it may be a bad idea to shout for others to hear you while you are in a situation that requires the use of earplugs. The sealing of the ear canal will increase the decibel level of your voice as it reaches the inner ear. This is callled the occlusion effect. Depending on the situation, you can combine foam earplugs with Bose noise cancelling headphones, or Sennheiser Momentum On-Ear headphones. Some people advice against using too much protection, as it is unnecessary and might worsen the H. Others, like myself, protect the ears to the extent necessary for not ending up in situations where the sound level feels uncomfortable, reasoning that the limits the body proclaim is best respected. You will have to decide for yourself which way to go. To my knowledge, the T-condition offers no guarantees in any regard. 3. If the T creates tensions and making it hard for you to sleep, I advice meditation as an effective way to get relief: https://www.tinnitustalk.com/threads/meditation-practice-to-deal-with-tinnitus-suffering.8165/ If you want to consider sleeping pills, check out what has worked out for others here at TT: https://www.tinnitustalk.com/threads/antidepressants-ssris-snris-maos-tcas-tecas.768/ Physical traning is also importent when you want to deal with tensions caused by anxiety. 4. While the T and H most likely will remain a pain in the ass, a surprising amount of people seems to get by with it, and the trick seems to be time. You can read the stories from some of these people here on TT. Hopefully, you will become one of them. 5. When it gets too much, people on TT will be here for you.
At this momement in time my T is perhaps a 3/4 out of 10. But guaranteed it will be different in another 24 hours. As for the H it's probably a 8 when it happens. Stuff like when my dog barks, never used to bother me but now I almost flinch at the sound of it. I went to see a show a few weeks back and when everyone applauded I had to cover my ears it was horrible. I also can hear the static from my TV and never noticed it before. Only realised because I felt my T had gone louder because it was a similar noise. Yes I have to have hope it will disappear as I guess I'm fairly new to it still. I really appreciate all this support, sometimes I feel I annoy people when I constantly talk about it, as they don't really get it cause theyre not going though it
If you will allow me to explain, I used to have hyperacusis and I managed to treat it with keppra. It might be worth looking into for yourself. As for the tinnitus, a 3-4, you'd be able to manage that...I'd be worried if you could hear it outside over everything, as I used to, but manage to lower it to a 1-2, with trobalt. I don't suggest taking trobalt, if your tinnitus is manageable. And don't forget about NAC.
At the moment the main thing bothering me is this Autophony. I don't get it. The other week I went a whole week without it, my ear still felt full but I didn't get the other effects. Then I mentioned it to my Mum one morning that I hadn't had it in a while, and as if fate was just waiting to intervene, within a minute of saying it, it was back. With a vengeance too it seems. Before I'd only get it on and off occasionally during the day but it seems to be getting worse. Today I had it from the moment I got out of bed, all the way through work, and only when I got home it started going on/off... Mostly on. I hate, hate, hate, hate, hate it!
By the way, use the quote button, otherwise I won't get notified of you posting something. Anyway. Have you seen an ENT about this yet?
Oh right haha wondered why everyone was quoting everything! Um no, had to be referred by my GP, my appointment is mid July, just seriously hoping it will clear up. I'm trying to put on more weight in case it's because there's not enough fatty cells on my tube which I read somewhere could be part of the problem? Not sure because then wouldn't I have it in both ears? It's so confusing
