I am finding here that there might be two types of T - one that is caused by damage to the ear (and this then causes T in some way) and maybe one that is not caused by damage to the ear itself.
This might seem strange, but on a quiet day if I half-burp (kind of burp but catch it before any gas comes out) then I get a "weee-ooo" sound which is the sound of my T - a high pitched shrill tone - and it goes away immediately. It is like a restriction in the chest when I do this half-burp that puts a pressure on something inside. And note - I cannot cause this to happen - it has to happen by itself. I can cause it this way: drink soda/soft drink and wait for the burp, catch it and then get the sound. But I cannot just try to do a fake burp - it doesn't work.
On a bad day, this T sound is constant and is basically shrill the whole day and night (which makes sleep very difficult). Then next morning, it is either on or off (and so it is EVERYDAY, like Groundhog Day, heh. Everyday repeats and I wake up either with it or without it but I can't do anything to avoid whatever the outcome will be for that day). So the cause is either something to do with my sleep position, my movement, my waking up cycle, or gastric or intestinal, spinal, or system. If it is OFF then it never comes back "ON" during the day or night, and if ON then never does it turn OFF. But more recently this T has been switching "OFF" during the day - and so many times more recently it is like I can almost push it to turn OFF but I can't, quite. Sometimes I am able to switch it OFF if I wake up with it ON by going through a morning routine (which I will not describe here) - and it DOES SWITCH OFF! - but I cannot say that is a solution because then I would be able to do it at will, and I cannot. It is like only seeing something if you are not trying to look at it. So it is with my T. If I try the routine it is like flipping a coin, but if I don't try then I don't get the chance and T stays the whole day.
I will add that I do not meditate, and I do not medicate. I do not "mask" the T although I have tried some sleep sound therapy of my own, but the plugs get in the way of being able to sleep so I can't. But only once did this actually work - I slept for two hours with headphones on in an unmoving position and when I awoke the T was gone for the rest of the day. I have some TMJ and tension around the mouth and jaw. I have tried two different mouth guards at night for a few weeks - with no positive affect. It is ON or OFF regardless of my mouth guard use.
I have considered looking at diet but there seems to be no high-level pattern that warrants deeper investigation. So excluding some types of food doesn't make sense because my diet is varied and some days I have the T when my diet is markedly different, and some days I don't have it and the diet is the same as always. It does not seem diet related.
I have had the CTs and MRIs and nothing physical around the ear is abnormal.
People here have advice on what is ototoxic or not - and I don't use the drugs that cause them. I sometimes take aspirin, paracetemol, or ibuprofen for head ache or body pain. And regardless of any authority on whether these can be ototoxic or not, I don't feel any differently if I do or do not take these drugs. eg I don't take aspirin and next day it is ON. It just doesn't happen for me that way. (also: I think people on this forum refer to the ON days as a "spike", but a "spike for days" is not using the term properly in my opinion). I have been tracking my ON/OFF days for two years, recording the level from 0 to 5 (with 5 being curled up in a ball on the floor). The ON days are a 4 almost always. And I record for each ear (with left being worst). My record so far is 10 days ON and 9 days OFF - and those periods were back to back. Then 4 and 4. So 10 ON, 9 OFF, 4 ON, 4 OFF.
I have been experimenting with neck positions and sleep - sometimes I find myself in a certain neck position when I wake up without T (yay!) so I try to force that but as you know we all move around during sleep and I cannot guarantee I will wake up in a given position. I have however done some neck twists which have resulted in the T disappearing after and hour (my feeling), but tried the same thing many other times and it has not worked. It is like trying too hard and it only works if I don't try at all. (again: you can only see it if you don't look at it).
Yes - it gets me down. Yes - my mood has changed, and changes every time is is ON/OFF. But I try to be positive and take great care to focus on it. Like this: if you are in a restaurant or noisy place and try to have a conversation, you really have to focus on the voice you want to hear, right?. But I also focus on the problem (T) and I keep that going in my head, and continue the conversation. I am NOT ignoring it (people: "just try to ignore it" - No!) Instead I am hearing the T and saying "Hey I know you are there. Not great, but WHAT EV. But I am am going to do the task at hand and you are going to like it - just don't get in my way". Sorry T, but SDASTFU (sorry, dear readers).
Watch a movie and same thing. Party, same. Driving, same. I am not again going down the hole of "oh no I have T - I can't do anything". Nup.
How do I cope? Hobbies, interests, family, getting involved with everything I can. I try to be the support for others - people need me to be the adult, step up, and take on responsibilities, so I do more than humans would normally do. I join clubs outside my area of expertise, I learn new skills and I now teach those skills to others. I don't think it is good for me to take up a solo activity (eg painting) - unless that activity is involved with a group and everyone is communicating/learning. We are social creatures - so I remain social. Keep active. Persue all interests. Run out of time for myself. And be the best person I can.
Wow what a post! I really hope this helps everyone reading to this point. Not sorry it is a long post - because as much as it may help you, it helps me. I am just being sociable - medicine for me
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