Tinnitus, Sensorimotor OCD, and Recovery; One Year Later

Discussion in 'Success Stories' started by Aaron44126, Jul 23, 2018.

    1. Aaron44126
      Balanced

      Aaron44126 Member Benefactor

      Tinnitus Since:
      July 2017
      Cause of Tinnitus:
      Eustachian tube dysfunction (from infection / labyrinthitis)
      I've been absent for a while but I wanted to come back and post my success story. I started writing and scrapped it a few times, but here I am back on my tinnitus "one-year anniversary". This is a long post, but believe me, I have tried to trim it down, it started out with a lot more detail than this... I just wanted to get out there everything that I have experienced and learned over the past year, in the hopes that it will help someone else at some point.


      The last year has been a wild ride. (Especially the first half of it, the later part of 2017.) I'll start with just the story. My tinnitus experience started on July 22 or 23, one year ago. I don't remember the exact day but I know that it was during the weekend. It started out without fanfare. I was walking through a quiet spot in my house, noticed a minor ringing in my ears, thought "Hmm, that's strange" and went on about my business.

      I started noticing the ringing more and more. At first, I was not concerned, figuring that I would just bring it up with my doctor at my next yearly exam (October ... almost three months away). However, it got louder by the day, slowly but surely. By the end of the first week, I was always hearing it at work when I was not tremendously busy. I started to always worry about it and listen for it when I entered a quiet area, not by choice, and it was always there. At about a week and a half, I was bothered enough to go ahead and make an appointment with a GP. He examined my ears, found nothing unusual, and referred me to an audiologist. He said that it would take a few days for the referral to go through and that I would get a call. He said that, depending on how it went, I might also need to see an ENT (my first time hearing that term). At the time, I figured that I could deal with it, so I was content to wait.

      Two weeks in, on the weekend again. At this point the tinnitus is starting to drive me crazy. I was hearing it almost always. It was an insane piercing pure tone at around 15,250 Hz. (I measured it somewhat frequently, using the AudioNotch tuner.) I started looking at what I could find online. I found this online forum and a few other resources. Like many of you, I started to freak out when I learned that it may be permanent or that it may be the result of a hearing-loss event. I wracked my brain. Unlike many, I couldn't point to something that caused it. I hadn't recently been around any loud noise. I do use headphones or earbuds regularly, but never set to a loud volume, I just use them so that I can watch something or play games in my "personal head space", if that makes any sense. I started to dig into every condition that I could find that had tinnitus listed as a symptom, hoping that I would find out that it was something like otosclerosis, which is well understood and generally can be treated with surgery.

      The annoying sound combined with the uncertainty sent me into serious depression for the first time in my life (and I have a new appreciation for people who deal with that more regularly). Nothing seemed fun or exciting, and it was all I could do to focus on just getting through the day. My sleep was wrecked. My appetite was also wrecked, I lost almost 20 pounds, and I'm a pretty skinny guy to begin with. I found it impossible to relax, as normally I would prefer to just zone out when I am feeling down or ill, but the sound permeated every waking moment. And even my non-waking moments, it invaded my dreams. In these early weeks, I would find myself dreaming about the tinnitus, and when I awoke, the same sound from my dream was right there, so clearly it did not completely shut off while I was sleeping.

      That Monday, after a night of terrible sleep, I told my boss about it (he was, thankfully, totally supportive) and spent the day calling any audiologist or ENT office that I could find, hoping for an appointment soon, as I didn't want to wait around for my GP referral to an audiologist to go through. It was at this point that I realized how long the wait for an ENT can be. (Six or seven weeks for an appointment? I think I'll go insane by then.) The sound was still getting louder every day, so any time that I thought that maybe I could learn to handle it, I was worried about what it would be like a few days down the line. I managed to grab an audiologist appointment for Wednesday, and counted down the hours until it came, hoping for just some answers. In the end, I learned nothing other than that my hearing seemed to be fine, and the technician suggested that I get in with an ENT. I made an ENT appointment for late September, but got myself on the cancellation waiting list, and ended up only having to wait about a week and a half for my appointment.

      At around three weeks in, I noticed that my right ear seemed a bit full or clogged. I remember on Monday feeling that a little bit but thinking that I might be just fooling myself, but by Wednesday, I could feel the clogged feeling for sure. As for the noise, after a little over three weeks, I noticed that the it had stopped getting worse every day. There was a moment at a bit under four weeks when I thought that maybe it had started to get a little bit better... Just a little bit. I remember this moment... I was alone in the evening doing dishes when I realized, and I stopped what I was doing, and had a moment of intense joy and happiness (maybe I won't have this forever!) and then a moment of intense nervousness and trepidation (wait, am I just kidding myself?).

      My ENT appointment ended up getting moved up and I had it a bit after the four week point. I pinned a lot of hope on this, hoping for answers and a path forward. My ENT believed that I had a "viral assault" in my auditory nerve and the inflammation was in part responsible for the sound. (This would be labyrinthitis, infection of the inner ear — which had come up in my research, but I discounted because a hallmark symptom is supposed to be nausea or balance issues of some sort, which I had not experienced.) He put me on a six-day tapering course of prednisone, and a nasal corticosteroid to be used daily until the symptoms subsided. He believed that I would be fine and that after two or three weeks I should be able to notice a distinct improvement in my symptoms.

      While the noise had started getting better (ever so slowly), my ear started to feel more and more strange. The full/clogged feeling got more intense and I even started to have a strange stabbing/poking sensation, or the sensation that something was worming around in there. The funny thing was, around late August when this was getting really bad, my tinnitus was actually gone. I celebrated, figuring that I was almost done with the tinnitus. I was happy to take the strange feelings over the dreadful noise. I did go back to see the ENT after about a week and a half, regarding the strange feelings in my right ear (apparently it is easier to get an appointment once you are "in", they got me in the day after I called about it). He suggested that I had Eustachian tube dysfunction (which I had already figured from my online reading), which may be a result of the infection, and that there is nothing to be done besides wait it out. He reiterated that I should be able to tell that I am getting better after a few weeks, and that was that.

      The next few weeks did come with improvements in my symptoms. The strange ear feelings became less intense. The tinnitus remained but it became less intense. While I had the 15 kHz+ ringing throughout August, the frequency got lower throughout September and I started to have all sorts of strange sounds mixed in. Crickets. Whistling (like a tea kettle). Electrical buzzing. Loud hissing (like air being forced out of a small hole in a tire, except it sounded like the hole was actually in my eardrum). Softer tones. It would change throughout the day with no real pattern, sometimes gradually and sometimes abruptly. I did find it to be particularly intense if I was woken during the night (and I have young kids so that happens). A little bit into October, that stuff gradually stopped and I was left with more of a constant pitched hiss.


      Now, I'm going to take a break and talk more in depth about my coping with it during these early weeks. When I realized that the sound may be permanent, like many of us go through, I started looking online for any, ANY sort of way to make it easier to deal with or make it completely go away. Early on, I latched onto masking sounds. I noticed that I could not really hear the tinnitus while outdoors. Both at work and at home, there were lots of sounds from outside — rustling leaves, birds, bugs, etc. After it started to get really bad, I tried to avoid masking sounds while indoors, realizing that hiding the tinnitus would not help with long-term habituation.

      After a few days, I said "forget this" and started working on a way to have indoor masking. I tried many things but I ended up settling on the "White Noise" app from TMSoft, which is available on a number of platforms, it actually has a number of ambient sounds to choose from and allows you to create your own mixes of them. I found that the crickets sound was very effective at masking my tinnitus, even at a very low volume, so I would often listen to that with earbuds during the day. (Just one or two volume clicks above "silent" would be enough to kill the tinnitus sound in my head.) Being able to shut the noise off "on-demand" helped lift my spirits a good bit. For night time, I used a mix of sounds, including the crickets, running water, and AC noise sounds that are available in the app. Usually I could still hear the tinnitus sound over this mix but it was relaxing enough to allow me to sleep. I used a sound headband from SleepPhones, also plugged into my phone. At work, I purchased and would often run a somewhat noisy desk fan, to keep the tinnitus sound at bay somewhat so that I could focus.

      I found that getting some relief early on was extremely helpful, and I recommend that everyone consider doing this at the beginning if you can do it safely. It allowed me to begin to unpack what was happening without being constantly assaulted by the sound, as I could flip it off as I pleased (or at least replace it with a milder, less annoying sound). As the tinnitus abated, I was able to reduce my reliance on masking. I stopped using my crickets/earbuds masking sound during the day at seven weeks in. At night, I started just using "brown noise" instead of the multi-sound mixture, though I had to switch back at some points during a few weeks of transition when the tinnitus was really bothering me.


      August and September were full of ups and downs. I had good days and bad days. By October, I was having mostly good days. My yearly GP appointment rolled around and I discussed my issues with her. When examining my noise, she mentioned that she could see inflammation. She suggested that I try Sudafed (the real stuff that you have to get from "behind the counter"), which I did. I noticed a change after a few days. It didn't help with the tinnitus but it helped my other strange ETD symptoms clear up, those were pretty much gone by the end of October.

      I was getting better at dealing with the sound. It started to be more of a background annoyance and less of an anxiety factor. I believed to realize that habituation is possible. I remember making a post about it on here around then, and another member asked me how many times per day I acknowledge or react to or perceive my tinnitus. My response at the time was, I perceived it pretty much constantly but it had become almost non-bothersome. I thought perhaps that was how it was going to be from then on. I don't think that the sound changed much between October and the end of the year (though I did have a few "spikes" where it became more intense, when I caught a cold or spent too long outside in the cold). However, by December I noticed that I could get through the day without perceiving it except for perhaps three or four times, for a few minutes each. Of course, if I stopped to "listen" for it, it would always be there... It simply had become such a non-issue that I easily moved onto something else and wasn't paying it any mind. Like any other background noise — running AC, car engine sound while you are driving down the highway, light rain falling on the roof — these aren't sounds that your mind pays attention to unless you stop to listen to them or there is a change. The very definition of habituation: diminishing response to a frequently repeated stimulus.

      From there, I was able to put the tinnitus aside, I realized that it wasn't a bother anymore. Here, one year later, it is still present. I think that it might be getting better still (very... very... slowly) and perhaps one day it will totally go away. I have had moments where it is VERY quiet but never totally gone (except back when my ear was turning loops due to ETD in August). I do notice it when I go to sleep at night, it is like there is a little electrical storm going on inside of my head. At some point, it stopped being the first thing that I thought about when I woke up in the morning (it was a huge relief when that change happened). I am able to get through the day without paying it any mind. Even when I do happen to notice it, which happens from time to time, it's more of a passing perception and it does not come with any anxiety attached, and any latching onto it that my mind does easily passes as soon as I get engaged in basically anything.


      And that's about it for my tinnitus story. But that's only half of the story.

      I realized in October that I have sensorimotor OCD. I've had it basically forever. I fought with it once hard a bit over a decade ago but somehow got over it. It hit me hard again in August, shortly after my tinnitus started. It wasn't until October that I looked it up and discovered that it is a real condition with a name. Sensorimotor OCD. Unlike tinnitus, which I spent many hours on the Internet to dig into, I was scared to look up this one because I was scared that I would read something that I could not "un-read" and that would make it even worse.

      And, there is lots of stuff on the Internet about tinnitus (of varying degrees of usefulness). I could only find two good articles about sensorimotor OCD. Here they are: one two

      So, what is this even? The first article mentions this in the "distinguishing characteristics" section: "the case of a perfectionistic patient who was constantly preoccupied by smudges on his glasses and by other imperfections in his sensory environment". That's totally me. I wear glasses and I hate it when they are smudged. I can't stand fingerprints on my computer or TV screen. Stuck pixels are the worst. I have a hard time sleeping if there is any sort of non-constant sound (a fan is OK, but a clinking string hanging from a ceiling fan or a ticking clock is not). That's one reason I like using headphones or earbuds, not for volume but for purity of the audio experience.

      Anyway, as I mentioned, in August shortly after my tinnitus started, I started being hit by sensorimotor OCD symptoms. Other things besides this sensory purity obsession. I would notice my breathing and get stuck on it, and actually have a fear that I wouldn't be able to get un-stuck on it. Blinking too. It got really bad in September. In October, I started to have trouble with being terribly distracted by eye floaters as well. (I actually saw an optometrist and later ophthalmologist about this one and they found that I had no more floaters than any average person my age, but they also found a retinal tear beginning to form and I was able to have that fixed with laser surgery, good timing I guess...) I finally looked it up in October and realized for the first time that these are all symptoms of a specific, known kind of OCD. I started looking into OCD treatments, ERP in particular, and also just general mindfulness. (These are described in the article, and in numerous other places where they are described related to OCD in general.)

      I started to realize how connected all of this stuff is. First off, the parallels between ERP (exposure and response prevention) and TRT, which are both types of cognitive behavioral therapy. Also, the fact that the tinnitus was playing right into this "sensory purity" obsession that I have. I started to wonder if there are others right here on this forum who have some degree of this and don't realize it, and that this might be why some people get freaked out about tinnitus while many others handle it with barely a second thought.

      Anyway, I never actually went to see a psychologist or anything, but I did read up a lot and began to practice ERP as best as I could on my own. From October through the end of the year, I honestly fought with these other symptoms more than I fought with the tinnitus, and getting them under control helped me reduce the negative reaction that I was having to my tinnitus. I learned to face the issues head-on and not try to distract myself away from them, which was my previous strategy. It took quite a few weeks, but by January I began to feel that I had it under control. I still run into my OCD symptoms but I understand them much better so the anxiety is gone, and as such, they also don't bother me and don't persist for more than a few minutes a day, usually when there is nothing going on.

      Honestly, I feel pretty normal, like I did before my tinnitus started, even though I have this new layer of stuff that seems to have been added on top. I feel like the onset of tinnitus caused a massive amount of stress and anxiety, and that in turn was a catalyst that opened a psychological wound of sorts that resulted in a huge ramp up in my OCD. While this wound has healed with time, it has left a scar (it will probably never completely go away). I have accepted my situation as the new normal and tinnitus as the new silence. And with that acceptance, I realized that I have just become tired of caring about it, and the anxiety cycle is finally broken.

      That's basically habituation, I guess, a shared goal for both tinnitus and OCD sufferers.


      Now, I'm going to get into my habituation rant.

      Habituation is a real, psychological process after all. I looked up the definition and Google shows it as "the diminishing of a physiological or emotional response to a frequently repeated stimulus". You can be habituated to all sorts of things and you do it every day. Sounds, like the sound of your central air system running. Feelings of touch, like the feeling of socks on your feet. Visual things, like the frames of your glasses (for those that wear glasses). These things fade out of your realm of perception and you generally don't even notice them unless you stop to perceive them. That is how it has become with my tinnitus, it's just another background sound and I basically go about most of my day without even realizing that it is there.

      I know that there are some people out there who rail against the idea of habituation, claiming that it is a "myth" and that anyone who claims to have experience it is lying to themselves and really miserable, deep down inside. These people often forcefully insist that they will be satisfied with nothing less than a total cure, and if that doesn't happen, then they will be confined to misery for the rest of their days. Maybe you are one of these people. Let me tell you, I was right there with you at the beginning. I didn't believe that I would ever be able to habituate.

      Maybe I have it easy. My tinnitus ended up being mild, in the end, after all. But let me also tell you this. My tinnitus is always there. I can always hear it if I stop to listen. My OCD made this even worse, early on. But here one year later, I can tell you that I am habituated to the tinnitus that I now have, that my depression and anxiety are gone and I am back to being my positive self, and that I am not "lying" and really sitting here full of misery and somehow trying to spread false hope in the belief that people can actually get over this. I actually did it, for real. Tinnitus is my new silence and, while sure I would like to go back to true silence given the choice, I have just stopped caring about it. I and others who make this claim and offer tips and insights are trying to give you help, not feed you some sort of false hope, so keep that in mind when you reply.

      What I have learned over the past year is that you have to attack your tinnitus on two fronts. The first front is physical — go see the doctor, and if a cause can be identified, see if you can have it treated, and so forth. Believe me, I wish that there was more that could be done on this front, and I appreciate the people who spend their careers working on it, but the fact is that tinnitus is complicated and still not fully understood and mucking with the brain is hard... So many people will run into a dead end early on going this direction. The second front is fully mental. This one is critical if there is no progress to be made on the first front. In the case that there is no way to get rid of your tinnitus, you have two options: be miserable forever, or take steps to change your mindset with regards to your tinnitus. I fully understand that one cannot just "decide" to stop caring about the tinnitus sound. It's a process, it takes both time and effort. It will be easier for some people than for others, but you're much more likely to get there if you make it a goal than if you make it something to avoid. In the OCD space I came across the phrase "redefining your relationship with your symptoms". Even if your symptoms remain, your negative reaction to them doesn't have to.

      I'll share two other tidbits that helped me get my mind past the tinnitus. The first was the realization that it is just a sound. It is a dreadful, annoying, and piercing sound but that is all that it is. It doesn't hurt you or cause any physical pain. (I think that this is one thing that TRT tries to drive home, although I never did TRT.) For me, I reminded myself that there are many people out there who have much bigger things to worry about. Any number of diseases, like cancer or ALS... Hunger... Physical safety... Watching this video really made this hit home for me. (I actually first saw this sometime before my tinnitus started, but it was something that I was frequently reminded of when thinking about this.) Tinnitus is really minor in comparison to other issues.

      The second is the fact, for many (and I would say the vast majority of) people who have tinnitus, it is not a major concern for them. They are able to get over it quickly and easily. You don't meet these people on the forum here very often, because people who aren't bothered don't have any reason to go out looking for places like this. I was surprised how many of these people I ran into. A co-worker who I worked with for four years who got tinnitus after serving in the military. My wife's uncle, an engineer who is involved with construction, told me that he has had it for many years and many coworkers in his office have it as well. We discussed some of the specifics of the sound and his is definitely louder than mine, and yet it is not a bother. Another family member had an experience similar to mind, he had some depression issues when it first started for him but he got over it after a few months. My mom even has it and had never mentioned it to me until I started complaining about it, she told me that she is able to easily ignore it. Realizing how common this is made me start to think, why am I caring about this so much? And over time, I started to care less.

      I never, never, NEVER thought that I would say this during the early days and weeks of my tinnitus. But, I am glad to have gone through what I did this past year, and I don't think that I would un-do it given the chance. I learned that the only way to deal with anything subjective that is causing you anxiety is to face it head on. Trying to distract yourself or hide away from it will only make it worse. I learned a lot about myself, mindfulness, and managing my attention. I feel that, if the tinnitus comes back stronger or when the next health issue hits, I will be much more equipped to handle it in stride.


      I want to leave with a few callouts. I can't imagine how much harder this would have been to deal with just a few decades ago without the Internet, or this site in particular. @Michael Leigh's posts were very useful early on, especially Tinnitus, A Personal View. Even though mine is not noise-induced, I did get some good information and reassurance from reading that less than two weeks in. I appreciate @Markku and the others for running this place. @Ben In SD's tinnitus started around the same time as mine and he was my go-to guy early on for sharing ideas and success. I hope that your tinnitus experience continues to be positive. @Stasiapascual asked me to keep her updated, so well, here you go. @Rick Garner's success story gave me hope during the early month's as his case seems similar to mine (with ETD), though his ended up fully resolving and mine has not. I've been (mostly silently) following some other users' stories like @TheDanishGirl, @Taylorslay, and @Gl0w0ut and I hope that you guys (along with everyone else here) continue to get a handle on it. I was in particular pleased when I happened to log on once last month to find @Gl0w0ut's habituation story, this is a guy who railed against the idea of habituation early on and who I was legitimately concerned about as a suicide risk during the winter. If he can achieve this without even really wanting to, surely there is hope for many others.

      If you made it to the end, wow. I tried to keep it short, believe me, but there was just a lot that I wanted to get out there. I wrote this out of order and in multiple sittings, I'm sure are a few places where I seemed to repeat myself or where I just had bad flow. Best wishes to everyone.
       
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    2. Lane

      Lane Member

      Tinnitus Since:
      February, 2018
      Cause of Tinnitus:
      Ototoxic Drug
      Hi @Aaron44126,

      Thanks much Aaron for finding the time and making the effort to share your story. I read the whole thing; now I'm ready to read the longer version you trimmed down. ;) Congratulations on successfully navigating your arduous journey!

      I'm less than 6 months in at this time, and feel I may have turned a corner this past week when I realized I no longer react with fear when things spike up a bit. We'll see how it goes from here, as I feel I've got a few more corners to turn before I can say I've successfully habituated. Your story gives me a little more hope I can eventually move past the worst of this.

      Just to mention, I recent made A POST touching on OCD, in case you might want to check it out. -- Thanks again for sharing your story!
       
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    3. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      HI @Aaron44126

      Thank you for sharing your story. I read all 5,000 words and printed them, as I'm from an era where nothing quite beats "reading words on paper" rather than on a computer screen. Although I must admit using a Kindle exclusively to read my novels. I want to echo @Lane words and congratulate you on your journey and path to success and hope that you will continue to improve and your future will be fruitful in many ways.

      I also want to thank you for your kind comments about my posts and article: Tinnitus, A Personal View, it means a lot. When I wrote it I was going through a particularly difficult time with my tinnitus and threw the towel in many times. Somehow I wasn't able to get any peace because the thought of starting something and not being able to finish haunted me. It took a long time to write although it may not seem like it.

      Take care and I wish you well for the future.
      Michael
       
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    4. TheDanishGirl
      Sad

      TheDanishGirl Member Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      05/2017 (H since 06/2017)
      Cause of Tinnitus:
      long term noise exposure (headphones), maybe some stress.
      FYI, Glowout is no longer habituated. He said so himself.
       
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    5. AUTHOR
      AUTHOR
      Aaron44126
      Balanced

      Aaron44126 Member Benefactor

      Tinnitus Since:
      July 2017
      Cause of Tinnitus:
      Eustachian tube dysfunction (from infection / labyrinthitis)
      I apologize then for bringing it up without doing due diligence, though I do have hope that he can re-achieve it. I should have checked his more recent posts. As time goes on I have been looking at this forum less and less (just time to move on to other things).
       
    6. RicoS
      Alienated

      RicoS Member Benefactor

      Location:
      Netherlands
      Cause of Tinnitus:
      Stress or Acoustic trauma
      Hi Aaron, If you read some of my posts you will see me mention S-OCD also. I have it too. Blinking , breathing, swallowing etc etc, but I also lost the fear of it knowing it is mostly anxiety that makes it seem worse.
      I did not read your whole post yet but will do it later!
       
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    7. threefirefour
      Rebellious

      threefirefour Member Benefactor Hall of Fame

      Location:
      California
      Tinnitus Since:
      5/15/16
      Cause of Tinnitus:
      140dB B R U H moment
      cya
       
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    8. Ben In SD
      Balanced

      Ben In SD Member Benefactor

      Tinnitus Since:
      7/2017
      Cause of Tinnitus:
      Natural Hearing Loss
      Thanks for the detailed update! I'm glad you're in a much better place and have found your way "past" tinnitus. It's not an easy road, but we are proof that it can be done. I'm super happy for you!
       
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    9. Taylorslay
      Happy

      Taylorslay Member Benefactor

      Tinnitus Since:
      09/2017
      Cause of Tinnitus:
      Years of excessively loud headphone use
      Glad to hear you are feeling better. When you take away all the emotional distress from these issues they become much easier to live with. Of course don't forget to be knowledgeable about certain triggers to tinnitus or any other health concerns. However, when all the anxiety and depression aspects are gone. Life is much more enjoyable. I love it when I see people who once were very distressed about something are finally able find their peace. And even find a way to turn their situation around into a learning experience and finally move on with their life for the better.

      Best wishes to you and much love!
       
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    10. Gl0w0ut
      Inactive

      Gl0w0ut Member

      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      Unknown
      Hey, I was having a bad week during the time I wrote those two posts. In general I would say I am mostly habituated in that it isn't life wrecking anymore. I don't occupy most of my time thinking about it. However, it is still there are still daftly annoying, especially when trying to sleep.

      Still, I'd say I have made to it some degree in the least. Best of luck with your progress. Hopefully you can make it.
       
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