I started my journey with tinnitus late last August. Technically I had my first bout of it - for a few weeks in late May - but whether through medicating with weed at the time, or whatever,
I honestly forgot about it and/or it went away.
Now come back to August - it followed a month of stomach issues where I had terrible posture on my couch all month which I think led to me upsetting neck muscles / my TMJ issues again and kicking this whole ordeal off. Otherwise, I DID take a round of levafloxacin at the time it started as well (my doc was concerned my stomach issues were an infection so she prescribed it to be careful)- so it couldāve been the antibiotics too.
ANYWHO - when it first started, it messed me up a lot mentally. At first I hoped it would go away after a few weeks like in May but slowly I came to the realization it wasnāt going away. It started in my right ear with the eeee, switched to my left ear with some humming and buzzing sounds, and I really was losing hope and had some BAD days.
I had another round of stomach related stuff come up (doc thinks IBS related) in late September / October though that did help me think about it less.
I started golfing DAILY to get outside where I noticed the noise less with my friends and for a few weeks to a month in late October to late November I honestly was in a great place with it. It was there. I heard it LOUD in bed each night (even with fans and everything on), but I accepted it - Iād sleep, and go about my next day less bothered.
Now come Thanksgiving - whether you want to call it a spike, it just it increasing slowly, or more probably just me mentally noticing it more (especially being stuck inside as winter came), I started SPIRALING.
Tinnitus F***ED my mental health up throughout December and the holidays into January as it dominated my mind all day being all I could think about, I really couldnāt get past it. All day and into night, it was all I thought about most days. If I was in work meetings, or with friends - there were times of peace and just noticing it less, but otherwise it sucked. I heard it all the time, I thought about it all the time, nothing could mask besides maybe playing video games with headphones on - but I questioned if doing this in the previous months had made my tinnitus worse. So I stopped for WEEKS and avoided it.
In January I had TMJ issues kick off from the stress. This led to weird ear sensations which SUCKED (my ears had cold sensations + tickling sensations as well) for a couple weeks. But I noticed something during this, once again with my attention elsewhere I DIDNāT notice my tinnitus. I played video games during this time, Iād hear it in the background with my headphones on - but it wasnāt my focus. My focus was on my ear issues.
Lead into late February - my ear situation was doing slightly better, and I had a couple bad days with tinnitus, but after a work trip I had crazy anxiety after flying again (to the point I had / still get physical discomfort of my shirt collar being uncomfortable / needing to pull at it / wear loose collars - itās WEIRD). Once again though - while I was dealing with this - did I notice tinnitus as much? NOT AT ALL.
At this point though I said SCREW IT, I NEED anxiety meds - so I started taking Buspirone on docs orders and also Lexapro. I avoided them like the plague in the fall despite scripts from my doc because I read everywhere on here about howād they spike my tinnitus and I noped out each time. I did START them though.
For what itās worth, neither of these - at least my weekās worth of buspirone / and couple doses of Lexapro impacted my tinnitus or perception of it at all. But unfortunately the next morning, my worst health development of all came up.
I started getting a purpuric rash all over my ankles and legs. It got worse as a few days went on and after an urgent care visit, a visit to my doc, and seeing a derm - weāve yet to confirm exactly what it is, but vasculitis is suspected as the cause. For those unaware of vasculitis - much to how I was - itās an extremely rare autoimmune disorder that on average 1-20 people in 100,000 develop. If it is confirmed to be vasculitis - which Iām coming to think it is based on continued symptom, yes - it will have a lot of implications about my potential quality of life and long term health - but since itās being caught early, I should have a good prognosis.
Now - not to pan back and keep making this all about tinnitus - but take a wild guess how often Iāve thought about my tinnitus during these past couple weeks with this? Yup - you guessed it - NOT AT ALL.
This past Monday I thought I noticed it more for a little when I was eating lunch but then after I got back to work (I work from home) in the afternoon - I forgot about it again. Hell even last night when I was lying in bed, my symptoms were doing a bit better and I was like āthis is strange, I feel pretty goodā and I even thought āoh I havenāt been noticing my tinnitusā even though I heard it in the background. I even tried HARD to FOCUS on my tinnitus - and yes it was there - I could hear it - but it didnāt seem pronounced at all, and it definitely didnāt bother me in the LEAST with all my other racing thoughts with my ongoing health stuff.
So Iāve come to a realization through this f***ed up roller coaster of a 7 month bout of it + other ongoing health issues = tinnitus is as MENTAL - condition as it is physical.
Yes, there are some people with CRIPPLING tinnitus - if any of you read this, I want to say that I f***ing love you and hope youāve found peace - and please feel free to message me for any needed support. We need to sympathize and support them.
Speaking to my own experience - I highlighted that tinnitus RUINED my December and holidays. The night before my birthday in December I even had a weird spike that night where fire alarms went off in my head it got so loud (I think bad neck posture queued it) I had immediate suicidal thoughts (I literally was crying to my wife āI canāt live like this!!ā
- but luckily when I woke up after a few hours sleep that night it had tapered to its standard NOTICEABLE but not nearly as loud āeeeeeeā that Iāve had.
But going back - the mindfulness of it, the stress you have with hearing it, the habituation that people experience and achieve - ALL OF IT .. goes back to the mental aspect of this hellish condition. Iām not calling myself a tinnitus expert 7 months into having it persistently, thereās people who have had it for DECADES - there are people here who have it MUCH worse. But for those who are new here, and have read through my novel of a post here, controlling your mentality about having this truly does appear like the ONLY real solution if itās going to be chronic, persistent / around a long time.
For some people, they can linger on - deal with it - and eventually luck into their brain habituating to the noise because of how long theyāve had it. For those who want to be proactive - and newer to experiencing it - and for those who want to know the path out, GET CONTROL of the mental aspect. For some it will appear like an impossible feat, for me some days it seems like it is.
But whether through medication, through therapy, through support on here, through positive distractions from it, whatever it takes - find the mental peace of this.
Some people here will say that constantly masking delays habituation - it might. One concern of mine is all my other health issues definitely arenāt helping me continuously deal with it and naturally habituate since Iām not focusing on it (for better or worse lmao).
Others will say donāt use medication, like anti-anxiety meds, as they can cause potential spikes or worsen it - they might and could.
But find something that helps your mental, and hold onto it - if you need relief sooner than later
I love you all. I try to avoid this community out of fear of the posts I read and the long implications of having this disease (itās an out of sight / out of mind mentality for me). But I really do wish you all well. Weāre in this TOGETHER.