dolphinskin

dolphinskin

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  • dolphinskin
    Never been a concert goer ever in my fucking life and the one time I go my life is ruined and everyone blames me for it yeah fuck me
    LukeYoung
    Same happened to me my friend.

    Try not to let it get to you, the world failed us with no awareness campaigns.
    dolphinskin
    Gotta love victim blaming. Been told yet again my t is my fault. My is it legal for concerts to be so loud? Why aren't there laws?
    volterra
    If people want to take risks with their own health I suppose that's fine. Why aren't there health warnings though! Like on a pack of cigarettes
    dolphinskin
    Every day just solidifies my future plans for suicide, I just can't fucking take this shit anymore
    View previous comments…
    dolphinskin
    @makeyourownluck tbh because I'm terrified. I've had 6 CT scans and 1 MRI in less than 3 years and I'm scared of getting normal t over my PT from a MRA/MRV since I've already suffered hearing loss and hyperacusis from the event that gave me PT.
    dolphinskin
    @makeyourownluck likewise I am beyond broke now from spending literally thousands on this stupid BS with nothing to show for it. I can't take the financial strain anymore and the suffering
    dolphinskin
    Idk how my problem could even show up there when this only manifested right after a concert. I guess my PT has to be noise or stress induced somehow. I've already had my CT scan w/contrast looked over by Dr. P. Just have minor stenosis on the opposite side to where most my PT is.
    dolphinskin
    Dr. P said that PT can be caused by an acoustic trauma but that ENT would have caught it?? I don't really understand...
    Forever hopeful
    Really? Everything I've heard or read is that pulsatile tinnitus is usually a vascular issue. I have it on and off and much prior to my acoustic trauma. My ENT suggested a CT or MRI.
    dolphinskin
    @Forever hopeful I never had PT until I had an acoustic trauma. I can't explain it either and don't get it :(
    sakrt
    @dolphinskin I can relate. It's exhausting. Mine is severe 24/7 pulsating as if someone closing off my neck. Pulsations is down to feet. Literally whole body vibrating, pulsating nonstop loud with it. :( I hope we will get help for it.
    dolphinskin
    I am thinking I'm one of the unlucky few with untreatable pulsatile tinnitus:(
    dolphinskin
    Had my appt with Dr. P. No answers for me. :( He says get a MRA/MRV but I'm guessing it won't show anything. That and blood work.
    dolphinskin
    Slight venous stenosis on right side, which was the side I usually don't have as much PT in. Although knock on wood that's where it's been lately...
    dolphinskin
    I hope PT can just go away on its own :( 5 months out now and still feeling empty and hopeless
    makeyourownluck
    It gets easier. My PT hasn't changed much but I've got used to it. No longer feel the heart wrenching sadness and crippling anxiety that I once did. 5 months is still early days.
    dolphinskin
    Idk how to fix my PT. Praying even if I never get dx, that somehow I will heal regardless. Wish I knew what to do. No answers many drs later
    dolphinskin
    Hyperacusis is improving, but it's a very, very slow road. I am ok with it if it takes years to go, but it's definitely a slow burn.
    dolphinskin
    Hope I'll get answers but kind of prepared not to. Every day is a huge struggle. No one gets it. Not sleeping well, wake up every few hrs.
    dolphinskin
    I sure hope I don't have IIH, but I guess it lines up with my vision and PT symptoms. I'll be happy to get answers either way.
    dolphinskin
    I get big b&w blurs in my vision, esp my peripheral, when moving my head or eyes. Apparently this is part of IIH?? Which also causes PT???
    dolphinskin
    Man I read about someone elsewhere having the same vision symptoms I do, and they have IIH?? I wonder if that's causing my PT too?? OMG.
    dolphinskin
    I don't have the strength to keep fighting and guessing forever. I wish I could take back everything that happened that horrible day.
    Lurius
    I feel horrible for you. I felt just like this. I still do every now and then. But help might be coming soon. Hold out a bit longer.
    Marshall
    We have all been there. I'm still there most days but it doesn't affect me like it did.
    dolphinskin
    Maybe it isn't even PT...in sync with heart, but only happened after acoustic trauma?? Maybe happened because of stress alone?? No answers.
    View previous comments…
    Wrfortiscue
    Not to hijack but @kingsfan when you bend over do you hear the blood rushing to the ears? You can feel it too
    kingsfan
    @Wrfortiscue I hear like a ffff ffff ffff sound with my heartbeat. I used to hear my heartbeat thumping in my ears when I would lie down in bed at night too. I never thought anything of it. Thought it was normal.
    Wrfortiscue
    I see. I'm hearing the pulsatile right now. It's my electric squeal lol bZz bZz bZz bZz mainly after it's been aggravated from sound
    dolphinskin
    I feel so alone in this. I don't even know why I have PT. It's so hard. Is there any hope it'll go away on its own? Drs say it's forever. :(
    Marshall
    how loud is it
    dolphinskin
    @Marshall people will be angry with me, but it's honestly not very loud at all. It's extremely disorientating though on top of my vision issues though with post-trauma vision syndrome and poor vision in general.
    dolphinskin
    Like laying down was the only thing that could stop me from feeling like I was on a boat and stop patterns moving as much, but laying down just makes my PT worse aa.
    dolphinskin
    Is there any hope the Susan Shore device will work for PT that changes with neck and jaw movement??
    View previous comments…
    dolphinskin
    @NYCGuy there's nothing drs can do for tmj?? That's horrible. :( I've worn a fitted night guard for years and still have jaw pain (not dx w/tmj btw just bruxism) so I totally get that. Is there jaw surgery possible for you??
    dolphinskin
    Thanks a ton for the rec, I've been looking for a neurointerventional radiologist, and it's especially good if he doesn't need a rec from a Dr. I only have a recent CT scan w/contrast from <2 months before I got PT, I hope that's enough?
    dolphinskin
    Really sussed out about getting MORE imagining when I've had so many MRIs and CT scans within the past 3 years.
    dolphinskin
    Literally got into a big argument. I feel deeply hopeless being told yet again that there's no hope for me. Suicidal.
    dolphinskin
    Just got out of another useless Dr appt with a supposed tinnitus specialist. Said PT is usually not curable. Has never heard of whooshers.
    View previous comments…
    Steph1710
    I am so unbelievably angry that twat said that to you! Can you stop the sound by pressing on your neck or turning your head? Is your PT in time with your heartbeat?
    dolphinskin
    @Steph1710 no, I can't stop it by pressing or turning my neck or head, although that does make it worse. Are there specific places to push down on? My PT is in time with my heartbeat and came after acoustic trauma from concert.
    dolphinskin
    I wonder if it's an anxiety/possible tmj/iih thing because I think I've read acoustic trauma can't cause PT? But mine is definitely synced with my pulse.
    dolphinskin
    I don't see any success stories of PT spontaneously clearing up or getting better when they don't see a cause for it. I feel so scared.
    View previous comments…
    dolphinskin
    Is it the case that they'd see something that would cause PT less than 2 months before I got PT from CT scan with contrast? I've gotten 3 CT scans and 2 MRIs in the past 3 years and don't want more.
    dolphinskin
    Really really sorry for the question bombing I just feel hopeless. So super grateful for everything, what you've told me so far is of way more value than the hours and $$$$ I've lost to drs over this so far
    Steph1710
    @dolphinskin will respond. Just a little busy atm and I want to write a thorough reply. I completely understand your frustration. X
    dolphinskin
    I can't believe that this is it, that one mistake can just destroy your entire life like this.
    Lurius
    Yup. One forceful valsalva maneuver and my life went down the drain. I used to be pretty big on poetic irony, but I don't think its funny anymore.
    dolphinskin
    I have no idea what specialist to see...have wasted four figures trying to get help for PT...
    View previous comments…
    Steph1710
    @dolphinskin I have IIH and my eye pressure is normal. You don't have to have pressure behind the eyes to have it.
    Steph1710
    Are you in the UK? Also, can you PT be stopped by pressing anywhere on your neck or behind your ear - perhaps turning your head to one side? MRI/MRA are pretty crap for PT. You need an angiogram with contrast. It's the only way they can truly see any abnormalities in the vessels.
    Steph1710
    Also, IIH is a cause of PT. You need to ask for a lumber puncture so they can measure the pressure. They can't tell just by checking the back of the eyes. Ask me as many questions as you like. :) Have you checked out the "Whooshers" site?
    dolphinskin
    Are there any stories of PT clearing up on its own out there :(
    Marshall
    What's PT
    Steph1710
    @Marshall PT is 'pulsatile tinnitus'. It's a whole different ball game of it own. A lot of people with "normal" T also have PT - myself included. Hope that clears things up. :)
    dolphinskin
    I wonder if you can have 4+ months of PT because of anxiety alone...I don't know who to ask or where to go for help...feel hopeless
    dolphinskin
    Was going to go in for a MRA with contrast, then I saw the horror stories of worse t after and poisoning from the gadolinium...
    NYCGuy
    I had MRA/MRV wit no issues at all but for sure is really loud but luckily my Tinnitus was not worse. Mi Tinnitus and PT seems to be cause by neck and TMJ.
    dolphinskin
    @NYCGuy Did the MRA help diagnose your TMJ and neck issues? I really hope it's given you answers for further treatment. :( Thank you a ton for weighing in. Don't like how the contrast appears to permanently hang around your body once it's been injected though...
    dolphinskin
    "Sorry you have tinnitus, but you need to take more personal responsibility."
    Stacken77
    A pretty condescending remark. What's the context? I'd be very upset.
    AfroSnowman
    Shitty comment but our outward reaction to our pain is the only thing we are/can be responsible for. That being said I still fail at that more times than I'd like
    dolphinskin
    @Stacken77 context is asking online for ppl not to set off illegal fireworks in my neighborhood for the 4th. Told I was lying about developing temporary T after an asshole neighbor set one off while I was taking the dog out to pee hours before New Years. And if I did develop t it's my own fault. As if I'm not suicidal enough.
    dolphinskin
    I see my heartbeat in my eye, left only, and that's the same side with the worse pt. I get pt in both ears tho, usually alternates.
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