New profile posts

What's new New posts New resources New profile posts Latest activity
2049v
I also don't want anyone's love, nor do I need it. Just save me from this torment, that's enough.
View previous comments…
2049v
@L along the way, I can hear it over everything. It's as if it's being transmitted to me through a different audio channel. Unfortunately, there's no way to beat this fucking thing.
L along the way
@2049v there's no way of beating this with any sort of force.. the acoustic harm has really injured me i feel like.. the only hope i have is that healing can take place with natural living and time..
orenge01
@L along the way same it's exhausting it's affecting my sleep now too, constant blaring sound. It was better even a few months ago, it was bearable but now it's screaming constantly :/
2049v
My family and friends still love me, or rather the old me, but I'm not the old me anymore.
Pinhead
This is exactly what I tell everyone. You really did like me pre-March 2021. I'm not that person anymore, nor can I ever be that person again.
2049v
@Pinhead, I'm struggling so bad, man. I spent my whole day crying.
orenge01
This hits deep. Because it's so true :(
snizzleberry
Just a quick update. I'm still doing good guys. I ate at a pretty loud restaurant tonight and I'm okay. No setback or nothing.
weehiru
That's great to hear mate, onwards and upwards with progress! :)
ellees
are you taking gabapentin? how is it going? did it worsen your tinnitus?
2049v
I had floaters a year before my T. Were the floaters a sign that T was coming? They started suddenly, just like T did.
marqualler
Looking forward to watching the 2-0 Minnesota Vikings on streaming tomorrow while I shuttle my kids around town and avoid loud noises :-D
Yellowblue44
Hi im new to this condition. Can i ask when you were servere. How did you cope with rain when bashing on the windows? I have vulux windows so its worse. Any tips?
ECP
I would wear earmuffs or earplugs when the sound of rainfall was painful.
Yellowblue44
In the uk its soon going to be winter . I have vulux windows. And when it rains it is so loud. Even ear muffs doesnt cover it?
Sodlin
Today i was using my riding lawnmower. Thought it was a bit more loud then usually. Check after i was done and the muffler had come lose....
orenge01
Well as long as it didn't cause a spike...
Sodlin
It did go back to normal! :)
orenge01
@Soldin That's awesome! Glad to hear that! :)
Yellowblue44
How does one live like this? Minute to minute? Hour to hour, year by year. Mentally how do you do it?
View previous comments…
4Grace
@Yellowblue44 - mine is getting louder by the day. After exposures mine gets worse. Never comes back down. It is extremity reactive. This is by no stretch of the imagination. Mine is both neurological and from sound trauma. The last few days it has been loud as hell. The pain and noise are too much. I don't know how I'm doing it.
4Grace
@Nick47 - yes. I cannot wear ear plugs. It is deafening with plugs in plus they hurt me. I can hear mine in the shower. I have a 6 head shower. With all of them on my T is above that sound. I don't have to strain the hear it. It easily over powers the shower and I do not have ear plugs in. The only thing that kept me sane was deciding not to stay in my room all day. It came at a cost.
4Grace
@Nick47 / I truly believe that 95 percent of people with T will not get exponentially worse. It's more the fear. My T changes when I move my neck, press on the right side of my head, press around the jaw. It changes and worsen with 70 percent of foods. Taking halls has destroyed me. This is hard to believe or understand if it's not happening to you. Something is eating at my auditory nerve.
Yellowblue44
4 months in being stuck in doors surrounded by buildingwork is too much. There are many people who have lived like this for years alone
Zigs
@Marin a window and had to whisper the rounds (sometimes in tears) so it sounds like you were still in a lot of pain?
Zigs
@Marin if you see this, could you let me know what kind of relief you got from pulsatilla? I ask as you mention you still couldn't open…
2049v
Every night, siren sounds explode in my ears, making me think about my future suicide. One day, I'll finally be free from this.
Zigs
I'm trying so hard but just seek to be getting worse. Also how did you start reintroducing noise? If you can remember how much you suffered and were desperate for help then please could you get back to me! Thank you
Rockman
It just starting getting better, could listen to TV a little louder, could go outside without earplugs. I just said I'm doing stuff in reason and did it
Zigs
Hey, sorry I know you said that your H improved out of nowhere once your stress reduced. I'm just wondering how you managed to get your stress under control when you were only getting worse, two years in etc, confined to your room?
Supersix
Are you still taking Trileptal?
View previous comments…
N
And you've tried Gabapentin, oxcarbazepine and keppra with no success . I have seen quite a few people have success with Lamotrigine. By now Neuromed should have experience with sound reactive tinnitus and what anticonvulsants work best in this group. They are a better choice than benzos. I would ask specifically the questions on anticonvulsants and nerve stabilisation. Pin them down! @ErikaS
ErikaS
@Nick47 I am limiting phone and TV audio right now during my spike. When I wasn't in a spike, I could easily tolerate these low volume level in moderation. I use a laptop but again, no sound unless I absolutely have to listen to something for a short time.
ErikaS
@Nick47 I did Gabapentin short duration at lower dose and stopped because it was giving me longer fleeting tinnitus, it was so weird. Tried Trileptal for 2-3 weeks maybe? Thought some improvement in first week then nothing. And Keppra was short as well because I started to spike.
2049v
I am a physically and mentally strong person but due to the catastrophic tinnitus I have, I am struggling not to end my life soon.
Zigs
Hey did you go back on Cymbalta?
View previous comments…
Zigs
It seems like it helped you before (last time around when you were severe) so could be worth a shot?
ECP
It helped only with depression. It didn't make the tinnitus more tolerable, and it didn't improve the ear pain. The ear pain was improved only by staying home as much as possible and by wearing ear protection when necessary.
RunningMan
I had missed this earlier and was wondering that myself. So Cymbalta didn't help with anxiety, either?
Zigs
Hey! If you see this please could you get in touch and let me know how you recovered after March 2022? If you could give some details of what you did eg how much you protected, what you could handle etc and then how you progressed? Thank you
Jsm_Joestar
I think it was mostly the passage of time. I tried to stay physically active by walking in the morning with muffs on when the streets were empty. i worked out at home. ate healthy, took cold showers. started doing antiinflamatory stuff like eating ginger and just protecting froms stuff that triggered my nox
Zigs
Hey! During your worst times did you leave the house etc? If all noise caused pain how did you manage to go out? Thank you xxx
ErikaS
*Thoughts/Advice Appreciated* I have a consult with a Physiatrist next Thursday who does an array of pain management things in his clinic..
View previous comments…
ErikaS
Honestly not many people have even tried occipital nerve blocks for tinnitus, but I did read more so in migraine threads on Reddit that some were shocked how the occipital nerve block significantly lowered or took away their T for 4-6 months.
ErikaS
If you were me, would you discuss this option with the doctor? I am mainly considering this given my very sensitive reactivity and even the sensitivity of the nerves in my ear canals, and Dr. Hamids work showing via brain scans that those with fluctuating, sound sensitive tinnitus like mine look very similar if not the same to scans of those with migraines.
N
@ErikaS I remember Hamid mentioning the Trigeminal nerve a few times. It's worth a go, although which nerve I'm not sure. If I was pushed I would say trigeminal but I'm far far far from certain. I do think Gabapentin helps me at doses of 300mg, as sometimes the 1st part of the next day I'm less sensitive.
Top Bottom
Back
Forums
Members
Donate
Menu