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mandyc
Hi delta784, just wondering how youre doing now. Im looking for some hope to get me through these bad times. My tinnitus is so extreme i just want to jump.off something high and die too. I know this would hurt my boyfriend and mum incredibly but i dont know what else to do. It is relentless and so painful. I don't see how anyone can habituate to this.
B
Have you tried Chatgbt? I have recently discovered Chatgbt and found that it was helpful and informative. If you lay out your tinnitus symptom history, including a description of the intestinal issues that you are encountering, it will provide you with detailed explanations and prognosis and a multi-step plan for addressing your issues.
dipp
Had a mental breakdown while talking with my parents on the phone.
H
Hey we never talked but I've read alot of your posts. You've always managed to get through it the past and I feel like you'll do the same now. We're all hoping the best for you.
dipp
@hey Thanks for your kind words, that meant a lot to me. I tell that to myself, but my situation is always getting worse. T related and HL related. I'm struggling to get through every single day. Maybe I can overcome this, but not very hopeful this time.
Varda
I may need to get treatment for HP :(
Do you have any wisdom on what is best to not worsen tinnitus?
UrbanBubblegum
First and foremost, make sure to request a sensitivity test for HP. Once you get the result, start googling. If you are not allergic like me, Doxy, Amoxcillin (fyi; HP will always remain sensitive to Amoxicillin), PPI such as Nexium, and they sometimes throw in Pepto Bismole. DISCLAIMER: I am not a doctor. Just sharing my own, very costly, experience.

Thanks for reaching out. Wish you the best of luck!
Varda
Cory_
Just had my first hyperacusis setback in 3 years. Damn!
I've seen it all before and I'm not scared anymore. Hopefully this time it'll be a short one.
Is the fact that my baseline was so good for so long, and that I withstood tons of bad noise insults with no setbacks, a good sign at all?
orenge01
I think I'm going through a nasty setback right now, I guess for being kinda reckless. Dunno if its from noise exposure or something else, but T is really loud at the moment again :/
dipp
Talking with people makes my new ultra high pitched electric sound go wild. I can stand in silence without much problem, read a book and so on. A little chat or something on TV, and it worsens a lot a it´s highly noticeable. I don´t know how to handle this. It seems like the end.
PennyCat
Well on the "bright side" I'm no longer freaking out about my normal T because my PT is back/acting up and now I have to deal with that and look into whether I have another stenosis that needs surgery. I want to die.
Tom Okay
Third anniversary in this forum but I've had tinnitus for 30+ years (mild). Now, it's pretty brutal, I think, and it takes my thoughts away every day. Still hoping and working on it getting better.
RestlessNights
Fainted today because I was cycling in the heat of south France, before that had terrible vertigo.. my T exploded at that moment, it was like an alarm, this demon truly has no limits
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RestlessNights
Hi, fainting is very unsual for me, but sometimes I do have some really annoying vertigo and heart palpitations from nowhere.. I think it can be related to my diet/lifestyle and anxiety but ill definitely look that up.. thanks!
streifzug
it really is a demon
MindOverMatter
@RestlessNights Well, what you describe with vertigo and heart palpitations (and some fainting, or close to fainting) is one of the main symptoms of POTS. So you should definetly get checked for this if these symptoms has been for a while. You would need a tilt table test or lean test by someone that knows about the field of dysautonomia.
DorianP
I haven't been able to sleep well these past few days. I'm too anxious because the low humming/rumbling in my left ear is just too loud. It's by far the most annoying of my tones.
DorianP
@Ben Winders Hey, I have exactly the same symptoms as you describe for the drone/low hum (noise induced, in left ear and sometimes feels like it jumps to my right ear as well). I've had it for six years now, and I still find it difficult to manage.
PennyCat
I keep thinking I'm hearing some faint whooshing from my PT again (which I had 2 surgeries for), and my right ear feels full. I can't tell if it's actually happening or if it's because I'm so hyper aware of all sounds and sensations. It seems unlikely it would randomly get worse at the exact time I'm extremely anxious about my normal T. Hopefully it's just anxiety
Supersix
What's up, Tinniuts land? I hope all is well with you all. It's been a while, I'm doing well. I still have T.
RestlessNights
why does my mom think so less of me and my problems :( I just want some support
Kam75
Salut, it must be horrible not to have the support of our parents.
I'm also having sleepless nights for years because of tinnitus. I know the feeling 😔 Are you taking any medicine to help sleep?
RestlessNights
Coucou! ^^

My mom doesn't really get my conditions, which is sadly how society treats tinnitus/hyperacusis. :(

I had my first insomnia episodes after T; only Lexomil helped (melatonin/donormyl didn't).

Now I stick to melatonin: it takes hours, sometimes I wake up and can't fall back asleep. I avoid meds as they worsen things+addiction. Do you still manage to get some sleep with the strong mix of drugs you take ?
Kam75
Unfortunately, no. My tinnitus became extremely intense (even though it was already bad) two years ago, because I tried to resume my social life.
Since then, my sleep has been catastrophic. Mirtazapine and melatonin, which used to work quite well, no longer has any effect.
It's hopeless...
I hope your situation improves anyway. It's possible, but you really need to stay away from noise above 70 dB.
B
I suspect that your gut issues are associated with stress as opposed to being directly related to tinnitus. I used buscopan to relieve IBS. I have recently found that magnesium glycinate has relieved a lot of anxiety associated with my tinnitus and reduced cortisol. This has beneficial effects for sleep and probably stress-related gut issues.
Juliane
I hope all is not lost. Atm focusing on improving my diet. Not sure what I want with this update, I guess just let you know that I think of you and I feel that, for me, all that hit me in recent years (T, eye floaters, depression, anxiety) is somehow linked to my gut - or vice versa. At least I know I need to change my life.
Juliane
Dear friends. Thinking of you. I don't check in a lot here atm since debilitating gut issues have completely taken over my life (T still there as well). I am starting to wonder if bad gut health is somehow linked to T as well. I even read that depression and suicidal ideation can alter your gut microbiome and oh boy have I been guilty of both since my T worsening in 2023.
RunningMan
Sorry to hear you are going through that. I can relate. I have intermittent stomach discomfort and pains specifically, but for me, it started about 1 1/2 years after my T got severe, immediately after starting SSRI's, which I stopped after 8 weeks, and the problem never went away. At a later date, Buspirone seemed to trigger more pain after a couple weeks, so I stopped that.
RunningMan
So, serotonin appears to make it worse. The gold standard for treatment of neuropathic stomach pain is Amitriptyline, which.... wait for it.... increases serotonin. :( It's intermittent pain with me but is definitely debilitating on the painful days, as if severe T wasn't bad enough.
delta784
Today is the last day for me on planet earth hope you guys get better love y'all <3 Alpay out from Turkey
H
I dont know what to say besides we all understand. I hope you find the strength to keep fighting, we all love you.
Kam75
I hope you're not serious?! Don't do something like that. Tinnitus can improve, please be patient. It takes years.
You have your whole life ahead of you, don't do anything foolish :(
Nes
Also, quick update: my hyperacusis has gone down to the point I feel comfortable listening to cars passing outside again. Spikes are very short-lived now, at most 3 days compared to the 2 months it used to take. I sleep so much better and it helps a lot
Kam75
Hyperacousis does get better over time, if you don't overprotect your ears all the time and if you expose your ears little by little to sound which are not supposed to be harmful (<70 db).
I wish I could sleep again. I didn't have a restful sleep for like 2 years :(
Nes
@Kam75 i took the opposite approach and overprotected until it went down (my H is accompanied by nerve pain and my tinnitus is reactive). Sorry about your situation!
Nes
Today I saw a great ENT who told me that recovering from hyperacusis is like recovering from surgery. It takes time, and everyone is different. He told me I was right to protect, that I should continue to do so until I feel comfortable moving to the next step. When I mentioned that other ENT have the opposite discourse, he told me: "Well, they are not up to research then". What a great ENT.
PennyCat
It's really hard to believe that I'll be okay. I really really hope I will, but it's so hard to believe in it.
B
Hi Rangelem. How are you doing now? What did you find out at Mayo?

I am supposed to have a cerebral venogram and maybe angiogram at Mayo this week, and I am super nervous about it worsening my tinnitus. Any info on how this players out for you would be very much appreciated!
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