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Barry098
Good night's sleep last night...that was my first since re-injuring my ears almost 2 weeks ago.
Juliane
Congratulations!

How did you manage?
Barry098
Not sure…might have just been luck…and being utterly exhausted
Barry098
Woah…not gonna sugar coat it…today was brutal yet there was also a really beautiful moment…what a bizarre experience it is to be human!
Barry098
Took 20 mgs of prednisone this morning...subsequently having a brutal morning...feels kind of like having terminal cancer at the moment except that unfortunately there is no end in sight!
B
How long did you take the blood thinner and vasodilator (Hydralazine) for? It would be very helpful to know if this needs to be long term or can be short term. Thanks for this information as it help steer me in what could be the right direction to avoid any further harm to my ears, or possible reverse any damage that has already occured.
Barry098
Sometimes I wonder if T occurs to slow life down.
Juliane
It definitely does. Mostly, when all my work and obligations are done with a lot of suffering, only more suffering awaits during my "free time". I am not sure I would call that a life. It slows down everything.
Barry098
Propranolol is really helping me cope BTW. Seems like it should be a first line of defense for new tinnitus sufferers.
Barry098
I want to try and do this tinnitus experience differently…going to try and keep my focus on acceptance.
Juliane
I hope you can do it. It would be for the best for sure. I am unable to ever accept this torture.
2049v
Hello, as far as I can see, your tinnitus also started with headphones. Is yours severe and 24/7? How would you describe your level?
orenge01
It's 24/7. It's more reactive than anything. It's most noticeable with background noises. There's a lot of whistling morse code. But then I also have the typical "eeeee" sound. It varies but, I'd say it might be hovering between level 3-5/10 so moderately noticable. Sometimes it can suddenly jump to a 7-8 but that usually lasts 30 seconds or something like that.
2049v
mine is so severe, suicidal level since it started 7 months ago
orenge01
I feel bad for you man. I wish you could find some relief from it, it truly is awful. :(
orenge01
The effects of these conditions seem downplayed. I don't feel it's talked about, taken seriously enough because, I mean the damage is permanent ffs. Most docs are like just learn to live with it. Not so helpful advice. I guess only those who have it actually know the severity of it. The true effects of damage just haven't been talked/warned about it seems. It's frustrating to say the least. :grumpy:
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dreamer16
I talk about it way too much and I've become so draining to everyone around me. They just don't understand. My mother said not to talk about it ever again. But I know I can't live with this for the rest of my life. I wish I could trade a body part in exchange for silence and never speak about this wretched thing ever again. I just can't accept this. Stupid pills have ruined me.
dreamer16
''don't look for it and you won't find it''. Works perfectly when it's mild. But when it's worse, I just can't ''not hear it'' even when I'm not listening for it. Sorry just needed to vent.
orenge01
No need to be sorry, it's perfectly fine. I agree with what you said. It's an awful condition, all we can do is keep waiting for a cure, and distracting ourselves from the noise. Even if you can hear it, not thinking about it is probably the best thing you can do :/
Barry098
Interesting that I've been through this so many times and yet each time is still so traumatic. I'm not a very good student apparently…lol
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LukeYoung
@Barry098 it's never an easy injury to begin with, and the anxiety because you know what can happen after injury doesn't help.
Juliane
That's because it's a new situation every time it worsens. So we cannot really use our past experiences as the shitshow starts all over again. It's a loser's game. The strongest man or woman in this world would not be able to cope, as it's not even about coping.
Barry098
@Juliane Agree…there is no real reference or baseline to measure against. Each new experience brings about a whole different set of variables.
Juliane
Happy first Sunday of Advent. My day will be spent in bed suffering and crying
L along the way
Love sister, i understand you. I don't know why life has to be like this now.. i also don't have any real answers.. hope for a better day.. but sometimes that also doesn't work. I hope you find relief, that things may be well some day please.. i think we are doing the best we can in this ridiculous situation.. pff.. love & healing
LukeYoung
Sending love and healing to you, i find being in nature, around local parks with people, dogs, children, the breeze, they can help lift spirits a little.
Juliane
I have had some relatively good weeks prior to this but as always in my life, good times (or now, relatively good times) will be punished with horrible times. Back to square one. Starting over, feeling defeated and without hope again. It does not help that I have accumulated other chronic health issues, probably due to the T ruining my nervous and digestive system with its relentless torture. Terrified of the future.
R
Im 5 and a half years in. Not sure your history but ill let you know, spikes suck and are scary, but they do pass. I've had spikes in various degrees of terrible and scary, but they always tend to calm back to baseline. Eventually you start to go oh, dang, and then you just move on and ride it out knowing it will pass. I know it doesn't seem that way but, you'll get through
R
I had a terrible spike that lasted a few days, really loud. That was due to noise. I had a spike last a month due to nasal spray. But they all passed.
Juliane
I cannot do this. Feeling Suicidal again due to horrible spike.
LukeYoung
You can do this, you've gotten through it before! Stay strong, keep distracted, it' will be hard to not focus on it, but you must try
Barry098
Theoretically, it will give me the ability to be present with the tinnitus without constantly panicking which might just create the environment to begin the habituation process once again. I am going to keep taking propranolol and I will report back how it goes.
Barry098
The more I think about it, the more I think Propranolol might be the perfect habituation drug for tinnitus. Unlike alcohol or benzodiazepines it doesn't mask the sensation of the tinnitus but it does keep the body from physiologically responding in a fight or flight mode.
Barry098
Thought I was headed for a stroke or heart attack today when my BP hit 154/106 ( and that was after my "relaxing" bath). So I took an 80mg slow release Propranolol and that chilled me out enough to be able function again. Just wanted to share for those of you suffering panic attacks due to the tinnitus.
Juliane
I find it hard to describe my hate for this condition with new words. Feel like I used them all. It sucks life out of you and leaves you empty and bitter.
Juliane
Once again finding myself in a situation where I might need to cancel my participation in a close family member's birthday due to this shit. I know they will be disappointed and I feel like crap for cancelling. But this disease spares no one and could not care less about your life and happiness.
Barry098
Well, the next 2+ years are going to suck. I feel like a convict who keeps getting more time added to his sentence.
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L along the way
It's such a sad situation honestly... pff.. i've also been enduring a lot.. and recently sometimes i had thoughts about the option of euthenasia.. i'm not in any way seriously checking that out now.. but just the idea of it stopping somehow.. oh well.. but it does fluctuate, there are some moments when things seem to ease up a bit.. finding some joy, hope & sense of wellbeing..
L along the way
However overall it hasn't been nice at all sadly enough.. and it will all end some day anyways.. i just hope & pray we can heal from this awful affliction in this lifetime
Barry098
Hang in there @L along the way I totally hear you, but the truth is that you will eventually get better. You just have to wait it out. I have dealt with T for 8 years now and each onset is the same cycle. The trick is surviving the first year or so…after that it always gets easier.
twa
I went to see Wicked with 3 kids. I wore my earplugs and just Sony headphones. I didn't wear the headphones for most of the movie until the end. It was fun, no issues with being too loud except for one or two scenes. I just put the headphones on.
Barry098
Thank God for the many years of experience living with debilitating tinnitus…I'd be in real trouble right now if this was a new problem for me!
BrOKeN_1
It's crazy... I don't think I would have made it long in this life if I had it this severe early on. But who knows.
Barry098
Mine was super severe right from the initial onset 8 years ago…but I was pretty naive and very optimistic about life so I survived it…now I have real issues with PTSD and these kind of accidents throw me right back into the abyss
Dylan Blake
It has started up again, still on the Flavanoids, loud enough to be noticeable in the quiet, might be time to get a ear cleaning appointment.
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