1 Year Anniversary Next Month...

So next month is my 1 year anniversary with this horrible thing called tinnitus. It's scary to think that I lost 1 year of my life to this condition and might lose more. I am so young and I just graduated college last year. I was very healthy and very optimistic about life. I made a list of all the things that I will accomplish like learn a few more languages, go to machu pichu, get a masters degree in Statistics. I am afraid I might have ruined my life for good. It is not remotely close to normal nor is it even remotely good as it was before. I am only 28 and got my Tinnitus last year when I was 27, there and then I knew my life was over. My T is still the same it was in January/February but I think I am better handling it (not habituating since I have 5 tones which change day to day). I just cope better now....I think.

How did my tinnitus begin?
My T was caused by me listening to the ipod at 80% volume daily for 30 minutes while jogging. I also attended a loud concert where I was right next to the speaker. My left ear developed Tinnitus while the right one did not. My T developed a week later ( a lag or delay of some sort). My Tinnitus was moderate a 6/10-7/10 for two weeks during my onset and then dropped t0 a 4/10 then to a 2/10, it dropped from moderate to mild and it was like my life was normal.

I visited an Audiologist (I will post audiogram up later) in October of last year. He said my hearing was perfect, everything was perfect, the only dips were at 5db on 3khz and 4khz. DPOAE revealed outer cochlea cell damage in left ear (tinnitus ear). He said that there is no way that an acoustic trauma could have caused my T and sent me to an ENT where the ENT can diagnose whether it is meniere or cochlea hydrops or acoustic neuroma or lymphoma. I started to overprotect my left ear and got hyperacusis which slowly went away.
My ENT told me there is no way this is an acoustic trauma (least likely), and the most likely is acoustic neuroma, meniere, cochlear hydrops, thyroid cancer, etc etc. So she wanted me to do CT, MRI, ECOG, Acoustic Reflex, VEMP, Caloric Test, Tympanometry. etc (Yup she is that retarded). Well the CT scan came out normal and so did the MRI, but after I sustained a head fall I developed balance issues which still continue to this day. It is related to high blood pressure which I developed sadly but it seems like it might be more than that (who knows). I declined the tests initially but did the Vemp/Caloric to see if somehow I damaged the vestibular system. My balance problems felt like I was on a boat in middle of a lake (like false sense of motion), sadly this never way, my doctor thinks it might be due to stress.

my T was barely noticeable in quiet rooms and I could work in an office. I had no H and no nothing besides the balance issues which felt like I was standing up on a boat on a lake. My T was amazing and it could be covered up by anything, a clock ticking, people talking, etc. I did another audiogram but this time at my ENT office with another audiologist and the hearing was perfect dip at 10db at 3khz and 4khz (this was jan 7-9). A week after that Jan 15 I did the caloric test (ear syringing/ear irrigation) in both ears it made me really dizzy. Then we did the VEMP test which was 100-110db decibels and it lasted for 2 minutes, it sounded like loud clicks from the MRI I did back in December. The next day Tuesday, January 16, I developed severe hyperacusis on the right ear. Wednesday January 17 I get exposed to a fire alarm in the library, and Jan 19 to a helicopter going over me while I was outside. My T every day started to increase from 2 to a 3 to a 4 to a 5 to a 6, the following week my T increased to a 10/10, where it was blasting loud. It was a jet engine sounding tinnitus that I could hear over everything and I mean everything. I felt like was sitting next to an airplane engine that how loud it was. I also developed hyperacusis on the left ear. Afterwards I developed T on the right ear (previously healthy ear). I had to quit my job because I couldn't work/concentrate anymore. My coworkers were sad to see my departure as I was a good worker and they liked me.

February 6, I make an appointment at my audiologist again where we do the pure tone audiometry and the DPOAE. The DPOAE revealed that outer cochlea cells are damaged and nothing changed from October. However, the audiogram did show a drop to about 25db on 4khz. So I dropped from 5db to 25db when compared to when I was there in October, and comparing to the Audiogram a month earlier from 10db to 25db on 4khz. He said not to worry as this is normal hearing and not to be stressed out. The reason for the hearing drop are not the tests but my anxiety which caused a drop on 4khz. He told me to go do TRT asap as it will help me!

My T from February up until right now is severe a blasting 8/10 with hyperacusis in both ears. The T in my right ear comes and goes but usually its not noticeable unless I put my finger on that ear. The left ear however is blasting. I have 5 different sounds: High pitched dentist drill which is my main tone, Subway stopping suddenly on tracks, screeching metallic sound, screeching fingers on blackboard, and a sharp eeeeeee sound. my T is not maskable anymore and can be heard over everything except shower or being next to a busy road.

I saw my ENT again in February and told her what happened,she was so upset and raised her voice on me even though I Had Hyperacusis. She told me that there is no way those tests could have hurt me and its all in my head. She then told me to go get money to do TRT and that it will help me a lot, she then said she has faith in me that I will get better.

In March I noticed I got more Floaters than I had. I always had floaters which were barely noticeable. However after the onset I noticed more of them. After the T increased to severe I noticed large floaters that cover my vision when looking in the sky. The worst thing I have now black eye floaters about 3 of them in my left eye and 2 0f them in my right eye. It looks like black flies or insects are in my line of vision all the time. I see them outside and now I see them inside on lighter surfaces (like walls, computer screen, books, etc)

In April I went to do an audiogram again this time at ENT, my second audiologist (the one from January) which showed a drop 20db on 4khz. I am going again next month (1 year anniversary) to the main audiologist to see what has changed. I definitely hear less on both ears with the left ear being worse. I have to yell at times because I cant hear myself or ask people to repeat themselves sometimes.

Things got even worse in June when I developed what appears to be static in front of my eyes, like bad static of an analog tv. You know when you have bad reception on tv and then you have the static. That's what I have it is not noticeable outside but inside it is, usually I can see it on dark surfaces. During the night is when it is really bad. I now have to sleep with the light on because it is so bad in the night, of course with the sound oasis machine.

So there you go folks. Some could say if I didnt do the tests I would have been recovered by now. Who knows? My ENT was the most worst doctor I have ever seen. She didnt know what she was doing and clearly guessed at things (scary).

I will go do an audiogram next month to see how my hearing has changed. Oh on top of it all I have a swollen lymph node by my ear (right). How the hell did I go from a healthy 27 year old to a completely messed up 28 year old with multiple conditions? Will this all get worse? I dont know and I dont even want to know honestly what will happen in the future. I went from a positive happy 27 year old who woke up every morning thanking god for amazing life to fearing what will happen to me. My friends who last saw me September 2, 2017, saw me again a few weeks ago, they just kept looking at me. It felt uncomfortable to why they are looking at me. They asked how did I get so many grey hairs and why I have huge dark circles? I finally broke down crying and told them what happened to me. A day ago I saw my old friend who I knew for about 8 years. We talked about what happened to us since we last saw eachother 2015 , we bumped into eachother at the store, didnt even recognize her lol. Like the other friends she kept looking at me and I sensed that she knew something was wrong. As I have so many grey hairs on my head, huge dark circles, and tired looking face. I dont smile anymore and my head is always down. I am always thinking whether my life has been pissed away.

Sometimes I think this is all a nightmare, and I want to wake up to be that happy and healthy person who was positive and full of life. Maybe this happens or maybe I realize that it never will. Perhaps I am sentenced to live like this for rest of my life. It hurts to see how people my age are getting married, traveling, having kids, enjoying life, etc while I am in this circle of swords which I cant escape. Where did we go wrong? There is just so much more to see and experience.

I will keep you all updated as always. If I ever recover, notice the word here EVER, then I will post it on here or if I habituate. So far the odds are against me but you never know. Life is crazy and if all this horrible stuff happened to me then what's not to say that in 5-10 years my life might resume where it left off. I am still keeping positive..I guess in my heart I have this strong wish to resume my life where it left off.

Visual Snow


Dark Eye Floaters

 

@dpdx
To have read your posts in the past and read this today truly makes my heart ache. I desperately hope that time will be your healer. I know how frustrating it is to try and help yourself and ask doctors to run tests and check ups to see if anything can improve only to have things backfire. I know in my heart you and the rest of us can all get through this. I know it feels like life has been ripped from our bodies. I have felt the muscles of my face stiffen with a permanent grimace at times. I am so sorry for you. I too am only 25 and since my onset all of my dreams have been incinerated. I just hope in time for habituation and healing. We can’t know what the future holds so don’t think about it if you can. Just think about this moment now. I’m here for you. Stay strong. You can do this. In one year from now you’ll look back at this post and feel completely different and I believe that!

I also have visual snow and floaters and it sucks but lately I’ve noticed I barely notice it unless I look at white walls or the sky.

 

I hope that one day (hopefully soon)you can recover and pick up the pieces of your life, where you left off.
But honestly after reading your story, I'm getting the sense there might be more going on.

Something tells me, that the caloric test was just the last straw that broke the camels back, so if it makes you feel any better, you probably would have got it next time someone slammed a car door or went through a buzzing door at a grocery store two weeks later.
I probably sound like a broken record since I have asked this question a few members before...but have you been tested for Lyme?
About half of the Lyme cases end up with T & H...if not, then I suggest you should.
Avoid the standart ELISA test if you can..it is pretty much useless, as it almost always comes back negative.

 

No lyme. Acoustic trauma.

 

Hey @dpdx we are the same age i‘m so sorry what has happend to you, i hope it improves soon. Have you talked with your doctor about medication?

 

Not trying to go that route. Many people on here had huge problems with meds. I dont want to make things worse as is.

 

Modern medicines are toxic. We need to check their side-effects.

 

Thank you for this comment. You know we getting T sucks but getting it at this age is truly horrifying. We are too young for this and had all of our lives ahead of us.

 

Yeah some users here have been pushing me to take anti-depressants, anti-anxiety meds. That wont help its just adding fuel to the fire.

 

Audiogram from October 2017 (mild t)

You see 5db on 4khz
Now in February that dropped from 5db to 25db khz on 4khz.

 

Don't take meds unless you are at the tipping point, I see way too many people cling on to them as a buffer to their every day life. It's not healthy mentally or emotionally, take time to overcome your problems and your life will improve. No amount of pain suppression can substitute strong mind over body. I really wish you the best and I know that over time it will get better. I was in your shoes once, I used to feel the same way.

 

Yes but we are opposite. My was Mild then turned Severe (after VEMP test), yours was severe turned mild. I lost a lot of hearing after that hearing test (20db). I sometimes get T on my right ear (crickets). Still trying to hope. I got so many grey hairs I am so embarrassed. I look like I am 50 not 28.

 

I was also in a situation where a tire exploded near by, where my parents took me a restaurant where the live music was super loud and I stupidly sat there for 15 minutes hoping I am not being rude. Both times the T spikes subsided and my ears recovered better than it was before the exposure, it continued to get better over time. I know every T is different, but what I'm trying to say is it has been a little under a year, remain positive to the idea that you will get better, You are very hard on yourself...don't let the thinking of "i am screwed for life" ruin your chance of recovery.

 

I am screwed for life because in addition to blasting T I accumulated other conditions. You are comparing yourself to me which sadly dosent work like that (please dont get offended). You dont understand not all of our ears are the same, nor do we have the same tinnitus.. Your ears probably healed faster and you are more resilient. Not many people on this forum like me have resilient ears. For me 2 minutes of 110db vemp test caused 20db hearing loss. For you the tires blowing and being 15 minutes in a loud bar probably didnt do anything as you mentioned, but for me it would cause hell. All of our T is different, some people on here also have Severe T but no Visual Snow nor Black Eye floaters yet I have them. I am almost 1 year in and exactly at the same spot I was in the beginning. I am not seeing any improvement, you think I would see at least some sign. Next month is the 1 year anniversary and January 1 year anniversary from the stupid ear tests which damaged my hearing further. I will do an audiogram next month at same audiologist and will post the results here. And If I do recover lets say I am still left with visual snow, extreme anxiety/stress which resulted in my getting grey hair, black eye floaters, high blood pressure, etc. Life will not resume for some people it is just a plain sad fact. For you and some other lucky users here it will, but for others it sadly wont and this forum is their escape from this torture. My Tinnitus was initially mild, I had two tones: electrical buzzing from transmitters and old tv static noise, after T ramped up those tones disappeared and I developed high pitched dentist drill, subway screeching noise, eeeee sound, chalkboard scratching with nails sound, and a very glassy almost like somewone is rubbing nylon. My T is loud and can be heard over peoples voices, over tv, music, over sound machine, etc. This morning I woke up and I was like damn another day with this crap..another day of suffering.

 

Sad fact is not many people will recover. I have two friends with T and my mom has two friends with T. Their Tinnitus is nothing remotely close to what mine is. When I told them how mine is their jaw just dropped. Mine is debilitating and every day is hell with this.

First Friend- He got T from a concert, white noise tinnitus, his is mild. He dosent go to concerts anymore but to cinema without earplugs, absolutely fine.
Second Friend-Got T from concert, mild hearing loss, tinnitus is mild, but sometimes according to her its acute. She finished very good degree.

Mom's 1 friend-Has mild T, he can hear it only in the night and that is bothersome for him. He lives totally normal life.
Mom's 2 friend-Has very mild t, he cant notice it during daytime, but during the night can and has to put some music to fall asleep.

It really depends..everyone's T is different...everyones recovery is different. Some people might reocover and move on and some might not. Some will have mild t which wont spike others will, others will loose hearing extremely fast with T some dont. It all depends on the person. You should be very glad @coffee_girl because you were given a second chance of life.

 

I get what you're saying now and I apologize if my comment seemed ignorant, i still wish you the best and if you really don't feel like it will recover then i hope that you will adapt over time and find solace. <3

 

Thank you for understanding. I hate being negative but you would think after 8 months after those ear tests there would be a sign of recovery, but there sadly its not. ANother user here @Dizzyhead888 did the Ecog which also resulted in his T jumping from 2 to a 8 permanently (mild to severe), his T didnt improve sadly.

 

So does tinnitus cause floaters?

 

YES and Visual Snow. I got dark/black eye floaters sine my T jumped to severe.

 

shit.

 

Yeah well tinnitus is not just a minor thing. It rewires the brain and damages the other sensorary areas of the brain. Why we are not teaching people about this I dont know.

 

I don't see how tinnitus could cause floaters. They are related to protein in the vitreous of the eye and have nothing to do with the ears or brain. The tinnitus might cause one to focus more on the body and so increase the perception of problems that exist. The floaters might be new but be unrelated.

 

maybe, then how do you explain visual snow starting? I believe tinnitus truly messes up the brain.

 

I don't know.

 

I dont know I am convinced that T damages the brain.

 

This is all anecdotal by the way, I don't know anyone who has T but also has floaters and visual snow. It is all theories at best.

 

My wish is to have your T one day and to be where you are at in terms of all of this

 

Unfortunately @dpdx I believe this is the crux of your problems. The fact that you believe medication will make your tinnitus worse means your anxiety and stress levels cannot be properly managed and reduced which would help you to look at your tinnitus and life more positively and over time I believe your symptoms would improve. As it stands you're on a spinning wheel with no beginning and no end and making no progress at all and it doesn't have to be this way.

All the best
Michael

 

Modern medicines can help people cope with tinnitus a lot. The alternative to not taking medication if someone's tinnitus is severe, is hospitalization where more powerful medications maybe prescribed.

 

Unless T reduces from severe to mild then I will do well. I dont want to take meds as this can only cause even more problems. Of course I am stressed out when my T is loud. Now I really dont see improvement with this unless those T devices. I am 28 years old and I feel like I am 73, unable to work or do anything really.