Tryn2BHopeful

I do better in nicer weather, but the bad part is that my tinnitus intensity spikes during and after exercise for hours.

You’re posting less which is a good improvement. Maybe start with some nice walks. They are good in so many ways.

@4Grace I dont much see the point in posting much anymore. Mostly when I have a really bad day. T still sucks, I have had some improvements here or there. It tends to go back and forth.

Thank you what happens when you try to get off?

I cant sleep and become more anxious. Takes about 3 days. Of course it might just be part of my normal cycle of T.

2 mg is the lowest dose I've seen mentioned. Does it still seem to increase your appetite?

I wish I had words for you. I wish I could help someone with this condition. With all m6 soul I wish I could help someone.

@4Grace Its all good, just venting a little bit. Overall I am doing better than some people and worse than others.

That’s such good news. A little better is good. Just to be able to say those words.

Surviving. Moments of joy are good. That’s a win. If you’re not worsening I believe you can be okay in time.

Will be tomorrow

Ah sooo this all went pretty well... it was relatively quiet and enjoyable, no spike afterwards. Soo yeah?!

That is incredible !! Yes that is a big Yaaaaa!

Uplifting does not work when T rages in your head.

@gameover I had more hope then. I had hope in habituation, sound therapy, supplements, that someone would help me, and somehow I would be the "exception" and get better. The fact that they say it gets easier with time. I cant say that it has, I can hide my distress better, if that's improvement then I guess I have gotten "better". I simply hold onto my life with everything I got, but its exhausting.

It would be easier with time if it wasn't worsening.

Starting with mild T for many years didn't seem to help me because the sudden increase to severe T suddenly in Feb 2022 was like a totally new and horrible experience. I never thought T could be like that despite having had it for many years.

@Tryn2BHopeful - I know what you mean. I feel the same. Don’t know how. The volume makes all the difference in the world. The volume and reactivity is what is killing me. This is unimaginable suffering. Go figure I learned to sleep with this beast. If it was not progressing I know I would be much better by now.

I wish I could sleep more than 5 to 5 1/2 hours, which is about what I get with medication. Too many issues as if the T isn't bad enough.

I take Mirtazapine

Seems I either have reactivity with noise or humming in silence. Masking or no masking I am SOL. What fun.

@RunningMan The fan does kill the sound for me, as does most things, but seems I have to use a bit of a higher volume than before. Also it seems like after I go for a walk I am good for a couple of hours. Maybe blood pressure related? I dont know I take Losartan for BP, and taurine I think can lower BP as well. To answer your question No, but I have used Space Station

I take a lot of walks, even yesterday, and bike rides in the summer. My T ramps up some after exercise, although it's usually the high frequency that's got my focus, so I'm not sure about the low freq T, in left ear only, although it's definitely variable.

@RunningMan sleep seems to suffer which ultimately leads me into a more depressed state and worse T

@BB23, I have never taken Mirtazapine, but I still have stomach pains over 3 1/2 months after weaning off Lexapro (that I used only 7 weeks). But I'm not sure that's protracted withdrawal because I had it while taking it - it's why I stopped. Maybe it brought out underlying issue. Looks like there's 2 of the neurotoxicity (1 education, 1 support).

@Tryn2BHopeful Well I hope you can keep your dose of Mirtazapine really low at 2mg and not have to increase it as I've read of others having to do.

My new PCP tried... Flonase, allergy meds... but that wasn't it.

My PCP first just said he wasn't going to talk about it because nothing can be done about it, and he just ignores his. But then he did refer me to an ENT, where I got the lipoflavanoids and melatonin suggestions and referral to audiology, where hearing loss was confirmed, which I already knew.

@Marina Moon they are clueless even within their specialties. No exceptions.

For no apparent reason, I guess?

Yeah like usual.

@Tryn2BHopeful - life pre T was awesome. All the hardships I had I know now were nothing in comparison. Life is grand. It is beautiful. I was always so happy. I never thought this existence existed. Pure torment for me. Incredible chronic pain in ears and neck. T blasting. I pray for a day that it’s better than the day before. Just one.

No I do not. It's diet controlled atm.

I did try melatonin 3mg extended release didn't do much except give me crazy dreams

I've tried different doses of melatonin <1mg to 5 mg, time release, sublingual, and taking it earlier in evening, near bedtime, at bedime. I can't say it has any effect on me, sleep or dreams.

@Tryn2BHopeful Drats. Maybe try smaller doses? I've read that smaller doses can actually be more effective.

2023 destroyed me and I got nobody that even cares in my life, no matter how many times I try to explain it. One of the first things that was said to me after I got T was "Sorry but we are kinda sick of your issues". I try to put that statement aside but sometimes it still resonates in my mind.

Do you remember which antibiotics they gave you for the surgery? Were they ototoxic?

I have no idea and I can't find it on any of the paperwork for the surgery. I do remember them saying they didn't remember if they gave them to me during surgery and did it.

4 out of 7 ain't bad

@Tryn2BHopeful - take the wins my friend. I pretty okay week sounds awesome. I know it might be hard at the moment… but .., a pretty okay week! Sounds like you are going forward.

Oh I agree, I am certainly happy about that. I almost felt like a person again. With T though nothing is absolute and can change in a second. Just gonna keep plugging away.

@Tryn2BHopeful Yeah I wouldn’t ever do that I miss our dogs LuLu and Tobbie. The next door neighbor has a lab also. Ok I will try to not be right beside him and learn his triggers as he grows up. Thank you that makes me feel better.

@SharonBell by your profile pic it looks like you got the puppy?

@Tryn2BHopeful we did get the puppy, but we actually took him back, we was very little and we thought he was to young to be away from his mom. My husband also saw that when we got there the dad looked like he had Pitt on him and in the picture he looked different. So we are going to get her a full blooded lab puppy instead.

@4Grace Somedays are ok and others suck. Just keep truckin along hoping for something to give.

@Tryn2BHopeful

Do you also have sound sensitivity / loudness H / pain H?

I'm almost 4 weeks in, and today I've been having the worst T so far (in terms of loudness). I'm starting to lose hope. :-(

@Yosemite I had sound sensitivity for the first couple of months. I still have reactivity but not as bad as I did in the beginning. Its a slow process.

Yea I hear you. Mine was certainly cumulative, but it all hit at once with little to no warning signs. Just woke up with it one morning. No recent big acoustic trauma or anything beforehand.

T is just a finicky beast... ZERO reason for a spike that I know of... but hell it could just be the rain.

We are so strong. The reality, like you said, T is a BEAST. No way anyone without it could understand. I agree with what you said.

Honestly what I found interesting is that the hearing loss could be on a different part of the auditory system than which they test. Typically the more quiet of a sound the better the hearing. Damage from louder sounds sits on entirely different fibers that process louder sounds according to this, thus normal hearing test but still having T.

@Tryn2BHopeful did you also watch the video about cortex? What do u think about that. You think it’s a scam?

@SharonBell Cortexi Ear drops? Most likely a scam.

I am in a pretty quiet room with 2 other people. I have to go out to the open office area occasionally.

I should add... what gets me is the 30 minute drive. The highway ramps up the reactivity of my T.

I WFH. I don't go to the office at all.

What did the chiropracter do?

Adjusted my neck a little and tried to break my shoulder... nothing helped T, but I didnt expect it to, was just hoping. Forgot about my T for a minute though...

@Tryn2BHopeful - forgetting about T for a minute. Well worth it :)

@RunningMan - what you mention above scares the shit out of me. I do things I should not … we have to live. Lucky are those with mild and stable T.

@4Grace Unfortunately, I didn't do much to protect myself over 20 years. I mowed, was around loud music, and rarely wore earplugs. Days before my worsening, a nasty noise came through my BT earbuds while on a treadmil, and I didn't stop it for a while because I didn't want to stop exercise in midstream.

@RunningMan - sorry. It’s those small moments. A month prior to T and another noise trauma I cut steel in my garage. It was so loud I felt pain in my ears. Had to stop every 5 seconds for how loud it was… had I known about T….

It took me 2 years to mostly not care even when i have the random few and far between severe day. When it's bad bad it's just background noise, there is no emotion behind it. It's just there, and i never thought i would come to "habituation" i always scoffed at the bullshit people were spewing when they siad that word.

I've read people can take years. We aren't even a year in yet. Sometimes I think I might be but then nope! Mine isn't mild it bounces between moderate and severe. Causes anxiety....I've had a few mild days and what a difference! People with mild T have it a lot easier.

@BellaMia - mild T can become a walk in the park. I can see that now.

We have to stop pending our hope on the sound of T. We have to be happy regardless of what it’s doing. That’s hard. I so want to see you so better. You are kind and much stronger then me.

@4Grace I am not stronger or kinder than anyone else here. I am just an unlucky bastard that got trapped by T. I have said I want to die more times than I can count. I don't normally post that here.

@Tryn2BHopeful - as much as I say. I’m holding back. I feel the same my friend. I feel the same. Everyday.

This is my life everyday. Small bits of hope destroyed daily. A marathon to get to the end of each day. Going to bed with hope that tomorrow with be better. I wish you the best always.

@Tryn2BHopeful It's sad that I too feel this way. Counting down the days when death will free us.

@BellaMia - :( I am so sorry to read the above from you. So sad we feel like this.

❤️

I also want to cry. The worst diseases: T & H.

:(. :(.

@gameover my body is healthy. I won't die physically for a while unless by an "accident". What I am referring to is the death of my soul, of what made me, me. It's the only thing fading.

I feel the same

Insane. Same. Same. Same. @Tryn2BHopeful @4alien2