Update: Three Years Ago My Tinnitus Worsened and It Has Not Positively Changed Since Then

[missingsilence]

Hi guys!

Hope everyone is hanging in there and coping as well as they can. I haven't posted anything for several months and a few weeks ago it was my three year permanent spike anniversary. Bottom line, since the night it got worse, it has not positively changed whatsoever.

Overall, I am in a better place mentally, but not by much. I'd describe myself as semi-functional, but struggling with depression (medicated).

Still feel guilty about the night it got worse, I went to a relatively small house party which changed my life. Oh well, hindsight is 50/50. Since then I've discovered some interesting things, my sister also has it, despite not being a partygoer. My mother and grandmother have it too. I have a feeling genetics really plays a role her.

I've tried prednisone, Betaserc, anti-allergy meds, LLLT (laser) and none have really helped.

These days I ask myself, will my life be worth it? I don't perform as well on an academic level as I used to and I'm quite lonely. Is there real hope that there will be something that will make this livable in the coming years? If not, can I still be successful and happy with all this?

 

[linearb]

Sorry @missingsilence.

This sucks. I was right where you were when I was 3-4 years in. I have found a combination of cognitive practices and drugs which allow me, at least at my current level of disability, to again have a pretty normal life and not think about this stuff more than maybe 3-5% of the time on most days -- but, getting there took a lot of exploration and effort and worry and money, and I am frankly not happy about the stack of pills I am taking (the Shulman cocktail of Klonopin + Gabapentin for tinnitus, plus THC because I like it and it makes my sleep deeper and easier). Existing this way is simply vastly more pleasant than the years prior.

We all have to find our own path and many people find some ways out of this maze over time that don't require aggressive drug use. Don't be afraid to try weird things, and, hang in there. There are treatments in the pipeline.

Also, I'm sure you've noticed, plague world sucks, and we're all extra stressed by that.

List of things I tried before resorting to going back on Klonopin:
Acupuncture
Physiotherapy
Craniosacral therapy
Barnes myofascial release of jaw and neck and shoulders
MBSR class
Daily meditation for weeks, meditation several times a week for months (and I still do this on and off, shooting for daily)
Yoga (again, this is part of my basic life health maintenance)

Reiki mushroom extract
Melaltonin
Valerian
Passion Flower
15 other supplements I am forgetting

Trileptal
Seroquel
Campral
Gabapentin by itself
Cymbalta
Trobalt
Anti-virals
A bunch of other drugs I am forgetting
Microdose psilocybin
Macrodose psilocybin
Xyrem (GHB)
Harmaline Extract
Methoxetamine (MXE)
3,4-methylenedioxymethamphetamine (MDMA / Ecstasy) (very limited, single uses)
n,n-dimethyltryptamine
Several russian anti-anxiety drugs which are not available here
CBD Isolate

In each case I tried to do this as scientifically as possible, being patient, trying things for a while before deciding how well they worked, and only trying things in combination after trying them in isolation. This is why it took me years to burn through every other option before just sort of throwing my hands up and going back on Klonopin.

 

[hans799]

Is there real hope that there will be something that will make this livable in the coming years?

Yes. I have direct experience with Lenire, the first of the bimodal treatments to come on the market - it most definitely affects tinnitus. It's far from perfect but it definitely does something. Lenire will probably continue to be improved, and there are several more like it in the pipeline. I think we'll see releases of new or improved bimodal neuromodulation devices every year from now on.

There are also several pharmaceuticals in the works. These might take a bit more time but should also become available in the mid-term future (3-5 years).

Also, the ongoing coronavirus pandemic is horrible. But as a silver lining, it has nicely focused everyone's attention and funding on medical research. Hopefully this'll also spill over to tinnitus research, too.

There's concrete hope now. Googlable companies, product names. Not just vapid promises like "in 10 years tinnitus will surely have a treatment" but actual, real stuff. It's not quite here yet but it's coming.

 

[missingsilence]

Thank you for your messages. I will try to hold on somehow but I'm feeling that any hope for a happy life is gone. How do you cope? @hans799

 

[hans799]

Thank you for your messages. I will try to hold on somehow but I'm feeling that any hope for a happy life is gone. How do you cope? @hans799

My main problem with tinnitus is its effect on my sleep and next-day performance. I hate HATE HATE being tired and sluggish and unable to work at my best. My tinnitus is low enough so that I can ignore it throughout the day, it's only a problem when I lie down at night.

I cope by having set up my whole life to manage sleep and energy. I keep a strict sleep schedule, do a keto diet (which provides a lot more energy than non-keto diets), supplement and work out to maintain health. And my secret weapon is modafinil, a non-addictive and non-tolerance-inducing stimulant pill which can offset bad sleep when I have it. So even if all else fails I use this drug to force my brain to be awake anyway.

All this serves to give me a sense of control. I can't control the tinnitus itself but I can control the effect that I hate and fear the most, insomnia/fatigue. And this, in turn, makes the tinnitus itself a lot more bearable, because I'm not completely at its mercy.

I'd rate my tinnitus as an "annoyance" right now. I really don't like having it and it gives me a constant low-level baseline of anxiety but I'm fully functional and pretty successful and sometimes, even quite happy.

---

If your personality is anything like mine (control freak), then the best thing you can do while we wait for treatment is identify the effects of tinnitus that bother you the most (loss of concentration? loss of sleep? whatever) and just do everything in your power to exercise control over these. Then, over time, we'll get working treatments too, and will be able to control the f@&king noise itself.

 

[Ferret]

Just "celebrated" my 5-year tinnitus spike anniversary
Like you, I don't think there has been much noticeable change on a physical level from when I stupidly took my earplugs out and subjected my ears to a sonic onslaught while seeing one of my favorite bands. Since then, it has been a daily struggle, made all the more so because the ringing is a constant reminder, "I did this horrible thing to myself by being a reckless turd!"

But at this point, I've come around to believing that it's not the tinnitus per se that has had the most negative impact on my quality of life. It's that self-shame, the negative and limiting beliefs about myself to which the tinnitus has simply become a totem.

I have friends who have chronic pain, migraines, etc. that cannot be resolved medically, and I feel like it's a comparable ailment in the sense that the main treatment is just raw human grit. When I need to give myself a pep talk, I don't tend to focus on hope for some medical breakthrough, but rather on inspirational stories about deaf composers, blind painters, handicapped mountaineers, etc.

It takes practice and perseverance, but we all have the power to rewrite the stories we tell ourselves about the losses we've experienced and mistakes we've made. I wake up every day in the quiet of my room to a blaring siren in my head, but I know I can have a pretty satisfying day if I remember to respond to it with "there's my drill sergeant, time to get moving!" It's rarely so easy as that, but it puts more wind in my sails. Hopefully something about my story helps you out. Good luck, bud

 

[Juan]

These days I ask myself, will my life be worth it? I don't perform as well on an academic level as I used to and I'm quite lonely. Is there real hope that there will be something that will make this livable in the coming years? If not, can I still be successful and happy with all this?

I'm sure you will be fine. It just takes a while to adapt, but most people adapt to much worse conditions in life.

If you live in a "rich" country one avenue you may pursue is getting any job that pays more or less ok, saving money and then moving to a cheaper country and tele-working. There are awesome places in this world and some of them are in countries people seldom visit, not touristy at all, cheap, with lots of space for every person... not "LA space" but real space in nature.

 

[missingsilence]

It started in 2015, got worse in 2017 and life hasn't been the same since. I am tired, physically exhausted. I'm in my early 20s and the last couple of days I feel like it's just not worth continuing anymore. I've been thinking of Lenire, but the results don't look all that convincing.

This has killed me and it's hurting those few people who are still around me. I honestly wonder what's the point. I feel like I've tried everything I could, now there's nothing left. My social life is gone, my academic performance is gone, my prospects in life are bleak, I am a shred of what I used to be. I hate myself. I ruined my life, I attended a loud house party and didn't wear earplugs. That night, I ended my life as I had come to know it. I had always been a quite person, never blasted my earbuds, never been to a concert.

 

[katri]

It started in 2015, got worse in 2017 and life hasn't been the same since. I am tired, physically exhausted. I'm in my eerly 20s and the last couple of days I feel like it's just not worth continuing anymore. I've been thinking of Lenire, but the results don't look all that convincing.

This has killed me and it's hurting those few people who are still around me. I honestly wonder what's the point. I feel like I've tried everything I could, now there's nothing left. My social life is gone, my academic performance is gone, my prospects in life are bleak, I am a shred of what I used to be. I hate myself. I ruined my life, I attended a loud house party and didn't wear earplugs. That night, I ended my life as I had come to know it. I had always been a quite person, never blasted my earbuds, never been to a concert.

I feel you. I'm sorry to hear you're going through an insanely tough time. I'm probably going to be in the same boat as you as well. All I can do is offer my support and friendship. Tinnitus can literally rip you to shreds but finding things that matter will only ever help you succeed the best way you can. Even if success is just breathing another day. We all know how painful shame from family members and ourselves can affect us. It's the worse feeling in the entire world and my heart reaches out to you.

 

[dan]

That night, I ended my life as I had come to know it. I had always been a quite person, never blasted my earbuds, never been to a concert.

C'mon, your tinnitus can't be that bad. 1st time is possible to habituate, as all people do.

 

[missingsilence]

I feel you. I'm sorry to hear you're going through an insanely tough time. I'm probably going to be in the same boat as you as well. All I can do is offer my support and friendship. Tinnitus can literally rip you to shreds but finding things that matter will only ever help you succeed the best way you can. Even if success is just breathing another day. We all know how painful shame from family members and ourselves can affect us. It's the worse feeling in the entire world and my heart reaches out to you.

Thank you for your kind words Katri. How are you holding up yourself? I'm trying to pick myself up today

 

[katri]

Thank you for your kind words Katri. How are you holding up yourself? I'm trying to pick myself up today

Sorry homie. I decided to take a break from Tinnitus Talk. Honestly I'm doing terrible right now. It was a situation I wasn't sure how to get out of and I'm suffering because of it. Tuesday through Friday I fought really hard. I took Prednisone, watched everything around me and now I'm dealing with some crappy head tinnitus.

I'd like to say it'll be fine but I'm also a bit worried. I can say that I don't hear it when I'm taking a shower or washing dishes tho. It's just overwhelming at times. I'm staying positive and remaining hopeful because I've had a decent day otherwise laughing with my family and reading my Bible. I'm ridiculously stressed but also optimistic? Time will tell.

 

[Lilah]

Hi guys!

Hope everyone is hanging in there and coping as well as they can. I haven't posted anything for several months and a few weeks ago it was my three year permanent spike anniversary. Bottom line, since the night it got worse, it has not positively changed whatsoever.

Overall, I am in a better place mentally, but not by much. I'd describe myself as semi-functional, but struggling with depression (medicated).

Still feel guilty about the night it got worse, I went to a relatively small house party which changed my life. Oh well, hindsight is 50/50. Since then I've discovered some interesting things, my sister also has it, despite not being a partygoer. My mother and grandmother have it too. I have a feeling genetics really plays a role her.

I've tried prednisone, Betaserc, anti-allergy meds, LLLT (laser) and none have really helped.

These days I ask myself, will my life be worth it? I don't perform as well on an academic level as I used to and I'm quite lonely. Is there real hope that there will be something that will make this livable in the coming years? If not, can I still be successful and happy with all this?

My ENT explained that tinnitus does not occur as a result of only one event; there were a lot of events/exposure (with loud noise) leading up to that one event which then sparked the tinnitus. So, don't make yourself feel worse by pinpointing to just one event and wishing you weren't there.

Have you tried maskers?

I think we all have to make adjustments to our lives because of tinnitus, such as our lifestyle to avoid loud noise and also to reduce stress even if it means changing our study or careers. Also, you have to cut out/reduce things that make you unhappy. If you make these other changes to your life, tinnitus will be a bit easier to handle over time.

 

[HeavyMantra]

C'mon, your tinnitus can't be that bad. 1st time is possible to habituate, as all people do.

We know something you don't.

 

[Kriszti]

C'mon, your tinnitus can't be that bad. 1st time is possible to habituate, as all people do.

I don't know if you mean this as reassuring, but it really does not help to belittle others' problems. This is not a race. I never doubt that your tinnitus is horrible, but telling clearly desperate people that theirs can't be that bad is insulting.

 

[LukeYoung]

My ENT explained that tinnitus does not occur as a result of only one event; there were a lot of events/exposure (with loud noise) leading up to that one event which then sparked the tinnitus. So, don't make yourself feel worse by pinpointing to just one event and wishing you weren't there.

Have you tried maskers?

I think we all have to make adjustments to our lives because of tinnitus, such as our lifestyle to avoid loud noise and also to reduce stress even if it means changing our study or careers. Also, you have to cut out/reduce things that make you unhappy. If you make these other changes to your life, tinnitus will be a bit easier to handle over time.

i don't think that's true, one event can make you deaf, so why can't one even give you tinnitus.

I got mine from one event, never went out, never went to concerts etc. 1st concert i went to, I had tinnitus after.

ENTs are full of shit.

 

[dan]

We know something you don't.

Which is?

 

[dan]

I don't know if you mean this as reassuring, but it really does not help to belittle others' problems. This is not a race. I never doubt that your tinnitus is horrible, but telling clearly desperate people that theirs can't be that bad is insulting.

I would love somebody told me my tinnitus wasn't that bad with as compared to theirs and that I will habituate it... not insulting here. I've been around tinnitus for a decade so let's just say I know what I'm talking about. love x

 

[Kriszti]

I would love somebody told me my tinnitus wasn't that bad with as compared to theirs and that I will habituate it... not insulting here. I've been around tinnitus for a decade so let's just say I know what I'm talking about. love x

Apologies, I misunderstood your intention and the wording. I hope that you will be able to habituate once again and better days will come until we have an actual cure (if ever).

 

[Sayeed]

@linearb, I am currently on Gabapentin (400 mg) and Buspar 20mg).

I'm curious about your experience with Trileptal. How did it work for you? My doctors are thinking of adding Trileptal 300 mg to my regimen.