Mo8409

You are back! ❤️

@Juliane Yes! Hello :) How's September treating you?

Hope life is treating you well Mo!

Happy Fall. It will be here soon. And then Halloween before you know it.

@MindOverMatter How did you get to a dark place? What happened?

@MindOverMatter I'm sorry but I saw you were from Norway and do you live in that beautiful wonderland? What a dream!

@Mo8409 Short story. Acoustic trauma... Yes, I do live in Norway -and luckily I have short access to a lot of nature landscape.

Oh, those sleepless nights are rough. I had those occasionally in early 2022, but if I'm still up 2 or 3 AM these days, I'll give in to Zolpidem, which I don't normally need at bedtime. So my least sleep lately is about 2 hours. I don't seem to "catch up" much the following night.

@RunningMan I'm sorry to hear that. Sleep is vital with this condition. It's not like you can just have a bad sleepless night and then drink extra coffee to stay awake. This entire condition sucks. Seriously.

I went a very long time with very little sleep. Not being able to sleep might be more torturous then T. Nearly went insane when I had a few months of insomnia. Hope that precious sleep returns for you. It’s our only break from T

I hope this is not coming across the wrong way. I often am treated like “stop complaining” others have done it. I try to provide positive comments to others because I genuinely feel they have a personality or T that will help them beat this. Most will. At the same time I don’t feel the same about my case. Some people are really suffering beyond what others can imagine. God bless. I wish everyone strength.

Sorry for all the posts. I guess if you feel like me have hope that you can one day be like the people who live a normal life even if at this moment you feel that it is impossible. ❤️

@Utdmad89 I vehemently disagree. Especially within family or between close friends. We should take care of each other. Warning each other about dangers - or giving advice in general - is what we should do. What the recipient of the advice/warning will do with it as another matter, but we should share. I maintain whoever does not tell about T close ones is an asshole.

@Tryn2BHopeful I did not but I bought a cheaper version to try for when I got back to work tomorrow. I got my daughter one and took a sip. Lol

Nope, coffee and pre workout don’t spike me. I’d be upset if I did since I love my coffee!

@Stayinghopeful This gives me hope! I too ❤️ coffee. Right now I'm stuck with teas with lower caffeine.

Rings hollow when you are suffering immensely.

Yes surviving every day for good reasons. It gives me some hope that we are all trying as hard as it is.

@4Grace We will find a way through the storm. ❤️

Yes we will.

It's not. Someone has to be the 1%. I guess it makes us stronger...

@MindOverMatter Thank you. ❤️ I'm not always doom and gloom but when I need to vent I come here. I really appreciate your realistic view & positivity. That's how I am too. We got this.

@Tryn2BHopeful Unfortunately medication is a HUGE cause of this shit condition. My dad got it from aspirin 30 years ago. :(

@Mo8409 I feel you, that sucks. More so with fun activities. Did you have fun meeting celebrities today? Don't know if this is welcome advice and easier said than done, but what helps me on bad days is try to only 'measure' at set moments. I track twice a day, then try to stop the constant 'this is worse. better now? wait, even worse?' Hope you're able to shift the focus, find joy and make some more fond memories!

@jimvee Thank you ❤️ I did have a fun time meeting everyone. Most were kind but not all but the ones that really mattered to me made my day and even said I smelled good. :)

Poison.

Praise God!

So good to hear ❤️

Hope it will happen for you! I'm hoping for stable mild T myself. But I guess that would require a miracle at this stage :-)

@Juliane I already read from a few people that they recovered after a trauma a few times but it just takes longer between each trauma.

@Mo8409 ❤️

@Mo8409 yeah the no hearing loss part is fun. I called my wife out on farting the other day. I am like... I have T not hearing loss...=P

It is so hard to pretend we´re okay because we´re not. This is a disease. Perhaps not in medical terms, but we are ill due to our symptoms. We need patience with ourselves and love from our surroundings. I still hope for a miracle though.

@Mo8409 @Juliane @joecuber @Tryn2BHopeful @4alien2 @Sarahmlflemmer @MindOverMatter the string of posts above… every word…. Just seeing it now. How people can relate through real suffering. It’s incredible. Everything is so true. For some reason I can read this string over and over. For what it is worth it feels good to be understood at a level that is so deep. Wow!

@Supersix Haha what!

I discovered that it's called an ice roller. It can reduce swelling, inflammation and help with acne - just another day in a teenager's life!

@Supersix just be sure to keep her from Accutane. That's the reason why I'm here. ;(

So sorry to hear it! But look, you are not doomed! What an ignorant woman to say something like that. Doctors have told me a lot of BS through the years too. What none of them could have told me was that my first round of tinnitus subsided after 8 years! And stayed mild (with occassional spikes) for 11 years! So Yeah, doctors know shit about T.

How exactly would they determine that the tinnitus was related to the brain malformation? That sounds pretty arbitrary. Why can't doctors ever admit that they don't know?

@WCJohn Yeah I'm confused too

@RunningMan Exactly!!! I was like Oh no.... I've seen severe... What I have is not that! I had it bad in month 1 but with time that got better thank you Jesus.

@Mo8409 Well that's good. My 18+ month variable tinnitus continues. My hyperacusis didn't really become obvious to me until a few weeks ago, and it's settled down significantly since Saturday. What a relief because I feared it might get worse and don't know what triggered it to start weeks back. Shows we aren't necessarily doomed.

@Mo8409 During hyperacusis in recent weeks, I never experienced any reactivity. I've never seemed to experience any change in my tinnitus due to the environmental sounds, masking sounds, etc. My TTTS also doesn't appear to have improved any, which started up not long before the hyperacusis, and I read about an association between those as well.

@LilSass Something in the Oreos causes the spike. This is the second time! I might go to ginger again. Idk. Oreos are going to take me out!

@Tryn2BHopeful Oh yes caffeine will surely cause a spike! I had to quit but stay away from the Oreos /tear

Definitely the sugar

@El BUZZ just wait until I update my pic lol

I'm kinda curious with everyone's point of views to research this further. I love everyone's responses!

It is not the same for everyone. Mine is worst in the morning and gets better as the day goes. Sometimes gets to near silence late at night.

I have never received a flu shot, and due to my tinnitus, I would not consider getting one. I received a single COVID shot over two years ago, which caused my tinnitus to spike to a very high level for three days. As a result, I did not receive a second shot, as it appears that any stress on my body or immune system can cause a spike.

@Supersix I never considered to immune response from vaccines causing a spike. I wonder if the covid vaccine had an adjament in it.

@Ryan Scott. I got 4 jabs, two Moderna, two Pfizer. Did they lower my limit? Who knows. I also was recovering from weird sickness (Covid test negative) during my trauma. I wonder if it was Covid. I do not really think so, but who knows.

Loud noise at work... what about yourself?

@nmackintosh A low dose anti anxiety med.

Aw shitty... it's fluctuates and stress and anxiety play a huge factor

@WCJohn Thank you for that great advice, you're right! I did try and made myself go out. I went on bike rides, sat on my porch and watched people at the park, and putt putt golf. How are you doing? Did you do anything?

Caught up with my old friend. We should have gone putt putt golfing. That is the best.

@RunningMan Some members have stated it can take several years to habituate, but if you keep worsening during that time you're just kind of chasing your tail.

@Mo8409 Thank you for that.
@kingsfan Yeah, plus my variable tinnitus differs through different sounds every day or two, also in intensity at times. Then add on completely new symptoms of TTTS & hyperacusis. I was pretty much habituated to tinnitus for many years even though fans/white noise didn't mask it, but suddenly worsened 18 months ago, and it became distressing. I still sleep poorly.

@RunningMan That's the worst. I feel for you. Mine is just constantly up and down when it used to be stable as well. Can't get a handle either.

I really feel for everyone on here. Everyone is so kind. I wish you strength. I hope you find peace.

I get you, I feel that way almost every day. I wake up and realize the nightmare is not over yet. Feel like I lost a piece of myself and I dont know how to get it back. We will get there in time.

Feel the same way. And people expect us to just get better. They can't see the pain we are feeling inside, that everything has changed and it's unbearable.

I've had that trigger my TTTS when lying on my right ear, but usually it starts more spontaneously, like this morning. Tinnitus itself seems unaffected by any positioning of head on pillow, although it can cut the masking sounds I play if I lie on my ear, so I don't do it much. Using stereo bluetooth to each side.

Yea, I’ve had 6-7 different ones blasting at one point. The electric one felt like static electricity passing through my brain.

@Tryn2BHopeful - fuuuuuuuu - lol. Your too much

@Joe Cuber I'm not sure. It could of been a random headache. I took 1 Tylenol which did nothing. What do you take for headaches?

@Joe Cuber Tylenol has never done anything for my headaches! Maybe ibuprofen but I'm afraid to take those. Have they increased T for you?