End of Silence {Noise Induced..?}

Hi, I'm 30 years old and writing for France, please forgive any mistake as English isn't my native language. I'm sorry if this turns out to be a long post..

It's been a while since I've started reading this forum and never took the time to introduce myself. I'm grateful for this community and the constant support, it's heart-warming and I wish you all hope and moments of peace.

How it all started - February 2021

I was on sick leave since a few days. I was diagnosed with severe anemia and asthenia, and my doctor put me on iron, vitamin D and magnesium complements, advising I'd stay at home till I got better.

My tinnitus started in my left ear at the end of last February. At first it only lasted a few minutes when I woke up, reminding me of an old modem - succession of mild sounds, always the same pattern, that would fade when I decided to leave my bed . One day, it didn't fade. The sound began to stay a bit longer every day, until I finally woke up with a high pitched whistling, hissing sound that eventually never faded, but only increased as days went by.

I fell in a terrible distress and anxiety, as I'm sure most of people do during the onset of tinnitus. I've always been a very quiet kind of person and hypersensitive, prone to melancholia, calm and silence were very dear to me. When I was still at school then college and university, I could start crying just because the sound of a noisy class was mentally too exhausting to endure. I'm also a writer, I love reading and listening to music to immerse myself in my story and my characters, and none of this I could do anymore.... I cried for hours. I couldn't sleep. The only way I found to mask the frequency I heard was a Youtube video called "4 Hours of High Pitched Tinnitus Neuromodulation Therapy That Works" (yeah, I know...). At night I used my headphones to play it on a the lowest volume and could grab a few hours of sleep. I know now thanks to his forum the use of headphones after onset was mistake.

Doctors and trying to find relief - March 2021

By the beginning of March, I couldn't cope anymore. I went to the doctor, and she firmly believed my tinnitus was anemia induced and would resolve with the iron complements. She gave me xanax to help with the anxiety, only mentioning it would help me sleep. I was ignorant at the time of anything regarding tinnitus and benzo issues during withdrawal, and took them ; 0.5g before sleeping.

At the same time, I began to seek help wherever I could find it. I engaged in a sophrology therapy, with a sophrologist specialised in tinnitus induced anxiety, and went to see an osteopath who found a lot of tension in the ears, neck and back area. She specialised in cranian osteopathy and has a history of helping tinnitus sufferers too, so I thought I'd give it a go... My neck felt somewhater better, but tinnitus remained.

It changed, over time and as weeks passed by. From a single whistling/hissing tone, the modem / dial tone came back, as long as a... sound, which I would be unable to describe, just a sound, loud, echoing through the entire head as though I was stuck in some kind of giant, hellish bell, and its sound waves kept shaking and crashing in my entire brain. Like the loud, echoing hum of a wine glass singing... At times the whistling began to switch from one ear to the other. To this day, the tinnitus keeps on changing and fluctuating.

I find it so very, very hard to habituate to something constantly changing. I cried so much as I mourned for silence, and for the life I felt was ruined. I wept mourning for me, for I felt all this dreadful, terrible noises were like acid patiently and violently dissolving everything I was. I couldn't read, couldn't write...

During this time all I could do was watching tv shows and listening to low music, trying to get my mind off the tinnitus.. Going for walks helped a lot, I live near a river and this enveloping, natural sound felt so good.

April 2021

Tinnitus worsened at the beginning of the month, becoming more erratic with loud flares that lasted few minutes, but scared the living hell out of me. My osteopath said this could be due to the rebound effect of our sessions, and to wait it out. The spikes eventually calmed down, but I was living in constant fear. By that time, I decided to stop listening to this Youtube video for sleeping as I began to fear it might damage my ears to deprive them of rest, and go for "silence" at night. Discovering and reading this forum, I know it was the right call but I made it definitely too late and undoubtedly damaged my ears even more during the weeks I kept using headphones.

By that time, I felt Xanax wasn't of any help for sleeping anymore, and I decided to research for informations about this drug. Let's just say I felt like falling into the promise of neverending nightmare when I began reading about people experiencing terrible tinnitus spikes during benzo withdrawal. I wish my doctor told me about this. I wish she simply knew about this at all.

These accounts appalled me to the point I decided to cut my Xanax dose in half in order to wean myself as soon as possible, and I experienced a few days of terrible panick attacks, fearing for my life and feeling suicidal, with unbearable tinnitus, stuttering to make a simple sentence, crippled by cramps from the shaking and tensions all over my body. I nearly begged my perfect and loving fiancé to just leave me and go on with his life, because I felt mine couldn't last any longer in such a pain and I didn't want him to suffer anymore seeing me like this. When I told him I didn't think I had the strength to live with tinnitus he told me he'd be strong for the both of us. He's such a kind, loving and gorgeous soul. I know I wouldn't be alive anymore if it wasn't for him..

Between two panic attacks, I called my doctor. She basically scolded me for cutting the dose in half, even if she never explained anything about benzos beforehand nor warned me about them. When I went to see her, she told me that 0.5g is "peanuts, p-e-a-n-u-t-s" and that such a reaction to withdrawal was impossible. She was positive nothing in any medication could ever worsen tinnitus - and as she's obviously very uneducated about benzos, I resolved not to engage in any kind of further debate with her on the matter and search for another doctor. For her, since iron complements didn't change anything to my tinnitus, she believes it's anxiety induced. I know stress can worsen tinnitus, but mine definitely wasn't stress induced in the first place.

I reinstated Xanax at 0.5g for a few days and decided to begin a much slower taper since April 26th. At the same time, I realised I had to stop this vicious circle of anxiety if I ever wanted to get out alive - and I wanted, still want it so much. Suicidal ideations don't come from a desire to die, but from an even deeper need of relief from the pain, which you can only feel by being alive. I try to cling on to that thought as much as I can... My fiancé and my dearest friends have been such a wonderful support to calm me down and help me through the worst days. My anxiety finally somewhat settled and I managed to find a way of living without breaking in tears of fear and panic every other hour. The intensity and loudness of tinnitus seemed to lower.

I stopped reading about it all day long, stopped monitoring it, comparing it, and tried the Back to Silence method as explained on this forum by the member I who love music. I also read posts recommanding to ignore tinnitus as much as possible, and though I have to admit I feel a bit lost between accepting it or ignoring it, things were better. I stopped adopting a flight response and tried to accept it as much as I could. Tried reading a few lines of a chapter, tried writing a few words for my novel, gardened outside, tried to hold on to every bit of positivity each day could bring me.

At the end of the month, I tried going back to work but failed. I stayed one day before going back to sick leave. I don't believe I suffer from hyperacusis, but my ears have become very sensitive and taking the bus, the sounds and stress at work were too much for me to handle...

May

This month has had so much ups and downs. I canceled my appointment with the ENT which I had been waiting for since March, because I feared the tests she would be likely to perform would worsen my tinnitus permanently.

Two weeks ago, I experienced four days in a row where I didn't hear the tinnitus at all during the day - it faded an hour after waking up, and came back in the evening, but I couldn't hear a thing between. It felt so...so good, and was such a relief... but for fear of being disappointed, I welcomed and enjoyed it without seeing it as a sign of healing. I know tinnitus is a fleeting traitor and should be treated as such.

I guess I chose to finally write today because I'm experiencing the worst day I've had in weeks... This... echoing, loud, nightmarish wine glass humming is killing me, shaking my entire head from within, and the ringing feels like a needle of sound piercing my right ear. Days used to be calmer these last weeks, I can't bear the idea of a permanent and new worsening..

I fail to discern a pattern of what makes it spike and flare... I tried to link it to what I eat, drink, to how I slept or what I've done, where I've been during the day, but nothing seems to make sense. The tinnitus is everchanging, and I'm trying my hardest to ignore or accept it, to stay in control and not let it overwhelm me, but I feel caught in a riptide and on the verge to drown again.. I fear this sudden flare is due to benzo withdrawal and I won't be able to stand it for much longer. I shudder at the thought of being only at the beginning of my taper... Or perhaps it has nothing to do with it and it's just the casual daily hell of a tinnitus sufferer.

I have to go to the dentist soon and am in fear of the appointment, though the last one didn't provoke any spike in tinnitus. I'm supposed to go back to work tomorrow, but I work in a high school and am constantly surrounded by hundreds of loud, screaming teenagers, answering the phone all day long.. I don't know if I can do this, even with the foam earplugs I bought.

I certainly brought it on myself by listening loud music with headphones for hours every day, there's nothing and no one else to blame, and I strongly believe this is the cause of my tinnitus... I've always been depressed and melancholic since childhood, but it's been worse without silence, and even worse knowing I have to keep my emotions in control in order to avoid any flare. I've never been the kind to suppress any of my feelings, and I feel trapped inside my head, inside my body, with these noises reaching new levels today... I want to stay strong for all the wonderful, gorgeous people I love, I want to spare them my pain and fears as much as I can because I can't stand to know they suffer because of me but it's so terribly hard.

I just wish I could go back in time and save me from myself..

 

I'm so sorry for everything you are going through.

If you had 4 days with quiet, I would say that is a very encouraging sign.

Although they are usually useless I think, maybe you should see an ENT if you can...

Also, I don't know how they do it in France, but I just went to the dentist here in the United States and the machine they use to disperse air is VERY loud. She turned it to a lower setting for me otherwise it would've been AWFUL!!! Make sure you wear your earplugs.

Good luck going back to work, I don't think I could handle loud teen-agers and my heart goes out to you.

By the way, your English is very impressive, I wish my French was half as good as your English.

As you know, there are some very smart people on Tinnitus Talk and surely someone will have some words of wisdom for you.

Hang in there. I've had tinnitus for 4 years now and some days are still really upsetting and I still get so frustrated by it, but some days aren't bad at all.

Hopefully it will go away for you.

 

C'est fou. J'ai ces sons aussi.
Il faut que vous prenez un test auditif!

You may get better as time goes forward, but it's strange that you have the same sounds as I do from medication.

Je ne pense pas que vous avez aggravé tes acouphènes quand vous utilisez le Xanax. Je pense ce n'était pas assez long.

 

@Mary97, thank you for your kind words, they're heart warming. English is a gorgeous language and I'm glad I didn't betray its beauty.

Those four days with quiet were a blessing indeed, but it has gotten worse since and I don't feel so hopeful anymore... It's easier to be strong when tinnitus fades and some tones lower, but these last few days I've found myself becoming more and more fragile. I had a panic attack last night before going to bed as the loud, echoing glass wine humming was getting stronger again, it took all my fiancé's support and deep breathing exercises to get some sleep.

I'm still too afraid too book an appointment with an ENT... I know I probably should, but I can't risk the hearing tests worsening my condition. I'm not ready for such a dire outcome... I just wish I could go back to where I was two weeks ago, quieter days, getting a bit louder in the evening, but not this global worsening.. I fear benzo withdrawal has somehow something to do with my anxiety rising again, even though I'm tapering off slowly.

After reading many discussions here on Tinnitus Talk about the dentist, I think I'm gonna talk to her and ask her to do this 5 seconds drilling / 10 seconds pause. I've never seen her yet but she's said to be really gentle and compassionate, unlike the last one I went to, so I'm confident she'll listen to me and try to make it as comfortable for me as she can.

I didn't take Xanax for long and not a high dose, that's true @Matchbox, but I can't help feeling my anxiety is increasing. I'm having a hard time keeping dark thoughts and tinnitus at bay.. I had come to such an encouraging and hopeful place, I just wish I could go back to this state of mind.. I'm sorry you're experiencing these sounds too. High pitched hissing feels like a crystal clear thread of sound to me, whereas the wine glass humming is... like a heavy and vibrating cloth thrown all over my brain. It's so intrusive and debilitating, I feel for you, and hope you'll get rid of it someday.

Thank you both for your kindness and support, it means the world ♥

 

I think French is much prettier than English

Well I can say that whatever caused my distortion sounds "has" gotten better at least. It is not gone, but without drugs it has improved (that wine glass hum has changed to many things but eventually became much quieter). It takes many months for it to get better and lower in volume. It may change a lot during that time, sounds may go away and others may take their place. It's very stressful, just give it a couple weeks and the new sounds should again change, lower, or even go away.

Try to get as much sleep as you can, it's very important. Using Melatonin and Magnesium at night to sleep making sure the room is very very dark and cool is important. You might find the tinnitus is very quiet or disappears in the morning.

As long as it keeps changing try not to worry, that's a good sign. Ginkgo biloba & Ashwagandha may also help heal nerve damage (don't use them at night, they will keep you awake).

Still get tests done to see if anything sinister is going on (especially, if it gets any worse).

Use Xanax once every couple weeks if you really need it (or emergencies). I don't see it making you worse unless you take it everyday.