dolphinskin

Same happened to me my friend.

Try not to let it get to you, the world failed us with no awareness campaigns.

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

@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.

@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

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.

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.

@Forever hopeful I never had PT until I had an acoustic trauma. I can't explain it either and don't get it :(

@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.

How do you tell the difference @Wrfortiscue ?

@Wrfortiscue How does acoustic trauma cause PT?? I never had PT until I got an acoustic trauma from a concert. That's so horrible, I don't know what to think.

@makeyourownluck i think pulsatile mainly sounds like a whooshing noise. Also when I get fleeting episodes on my pulsatile ear the heartbeat noise stops then resumes when fleeting is done. I think you need an MRA I just got mri with contrast and it was clear

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...

No change sadly

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.

@Jerad What's nox?

@dolphinskin its hyperacusis w pain. Do you have loudness h or h with pain ?

@Jerad Yeah but not as bad now 5 months on. Was pretty bad before with stuff like faucets, shower, toilet flushing. Didn't know there was a name for it. No doctor mentioned that. Thank you for letting me know!

@dolphinskin absolutely the best of luck!

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.

We have all been there. I'm still there most days but it doesn't affect me like it did.

Not to hijack but @kingsfan when you bend over do you hear the blood rushing to the ears? You can feel it too

@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.

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

how loud is it

@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.

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.

@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??

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?

Really sussed out about getting MORE imagining when I've had so many MRIs and CT scans within the past 3 years.

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?

@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.

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.

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.

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

@dolphinskin will respond. Just a little busy atm and I want to write a thorough reply. I completely understand your frustration. X

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 IIH and my eye pressure is normal. You don’t have to have pressure behind the eyes to have it.

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.

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?

What's PT

@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. :)

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.

@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...

A pretty condescending remark. What's the context? I'd be very upset.

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

@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.