Pulsitile tinnitus 24/7: I have... - British Tinnitus ...

British Tinnitus Association

5,063 members2,972 posts

Pulsitile tinnitus 24/7

Boss1
Boss1

I have Pusitille Tinitus 24/7. Vey loud at night and when I physically exert myself, although I make myself walk everyday I have to do many mental tricks to distract myself from it. It is getting worse. Had it 2 years. Did have concussion 6 months before it started. CT scan and MRI scan negative although these were done over a year ago.

It is so loud, I can't believe that some kind of instrument can't detect it!

All avenues explored on the NHS and have seen 2 private doctors specialising in the interface between neurology and audiology in the UK whose concern and attitude have been great and trying to connect with these again although I have no funds...but wondered if anyone out there has experienced similar....

10 Replies

Hello Boss1 I’m sorry I don’t have any advice but certainly sympathise with you even though my right sided PT only started on July 4th. It was definitely loud!

I did visit my unsympathetic GP early then went to see another and was referred to ENT consultant who was fairly helpful - bloods ok and MRI/MRA head ok. He detected heart murmur and he sent me to cardiologist who was much more use-heart murmur not significant but did detect a supraclavicular bruit but on opposite side to the PT -anyway after more tests(CTA contrast neck, echo etc) given all clear-right ear still whooshing but to be honest it doesn’t bother me much now I know my carotids are clear and I don’t have an acoustic neuroma. Husband says I should continue investigations if it’s still there but I feel the tests are more stressful than the PT -for now anyway. I was lucky in that I had kept on my private health insurance-I think the waiting time just to see ENT was about 7months. I did have bilateral PT briefly when pregnant 30 years ago but think I can dismiss that differential now.

I have heard Addenbrookes is excellent but have no personal experience. Is that an option for you to be referred there?

I expect you have looked at Whooshers.com website and their FB page? Lots of information but perhaps too much? It did freak me out a bit.

I do hope you get relief, it’s certainly miserable-I feel a bit bad as I was rather abrupt when the nice GP tentatively asked about anxiety as a possible cause and the ENT consultant suggested migraine-never had one in my life and would it be 24/7 ?

Certainly mine is worse in the wee small hours or after exercise. To be honest it’s really not too bad at the moment. After I got the all clear I’m trying my best to ignore it and it’s more of a nuisance than anything but I am very sorry you have this.

It felt incredibly loud when it first started and very wearing. Sadly no advice but I really wish you peace. All the best.

Boss1
Boss1 in reply to Maisie1958

Thanks Masie. I have searched out a guy in Sheffield whose specialism is between neurology and ENT and I'm getting my local hospital to send scans to him. I've had CT and MRI which haven't shown anything significant but the guy in Sheffield says it depends what you are looking for...who's interpreting them....The T didn't spike after a scan. Wooshers.com is interesting but generally scary! Will have a look on FB.

Maisie1958
Maisie1958 in reply to Boss1

That’s great re doctor in Sheffield-please let us know how you get on. My ENT consultant certainly doesn’t want to see me again (I was very nice and polite) as says has no expertise in PT -only seen 3 or 4 cases. I wish he had said that before my appointment. He was useful though in getting tests done. Cardiologist was more helpful and did get advice from Vascular department( I thought both would be the same but apparently not) It’s difficult to know who to see.

All good wishes.

Hi Boss 1

Did you notice a spike in your symptoms after your MRI. (With contrast)

I had a brain scan September 2 and it worsened my tinnitus and gave me hyperacusis.

Before the scan, my T was at a constant and tolerable level but now it spikes or fluctuates.

The hospital reccognizes that I've suffered hearing damage from it but wrote in a letter to me that it was a known risk(meaning that they had warned me, which they did not) and that I'm one of the unlucky ones.

Apparently our USDA regulations accept hearing damage as an acceptable concequence of MRI scanning, even if the scan was intended to diagnose a hearing problem, Go figure.

As for managing it, I suspect we have some control over the spikes but the baseline wringing seems to be a constant thing. Tinnitus is a symptom, not a disease. It's a sensation of sound your brain synthesizes as it searches for missing frequencies you've lost. It can be related to nerve damage or nueropathy. Your head injury may have irritated nerves that run adjasent to hearing related nerves. My initial T resulted from whiplash. Either c3-4 or c5-6. Our brains are retraining themselves to find new neuropathways, so there is hope.

The US military has just awarded a large grant for T research to Doctor Stephen Cheung at UCSF, who is overseeing my case. They claim they don't expect to find treatments for T with the research but it will apparently give the military some answers it's looking for........Hmmmmmm.

Boss1
Boss1 in reply to Wringing1212

Hi there, thanks for replying. No particular spike after scan but it has got worse over 2 and a half years. My hearing is fine put the pulsitile whooshing is pretty unbearable now and the hardest part is nobody diagnosing it...when I search the web there are some pretty scary stories...think I might go find a cardiologist...

Wringing1212
Wringing1212 in reply to Boss1

Why is everyone's T spiking up all of the sudden? Mine just ratcheted up a couple notches. Hm.

Maybe HARP or something in the environment? Yesterday was a heavy spray day.

Realisticly, could be blood pressure or something. I doubt I'll ever get all the boxes on the checklist ticked.

NicBTA
NicBTAAdministrator

Hello and welcome to the British Tinnitus Association forum Boss1. Do feel free to ask any questions, I hope that you find this a helpful and supportive place to help you manage your tinnitus. We have some members whose tinnitus is pulsatile in nature, and I hope some of them reply to you.

We have some resources that you might like to check out in addition to our home here:

tinnitus.org.uk

- especially tinnitus.org.uk/pulsatile-t...

takeontinnitus.co.uk

Helpline 0800 018 0527 (Monday-Friday 9am-5pm) (outside the UK you can call +44 (0)114 250 9922)

Warmest wishes

Nic (BTA Communications Manager and Forum Administrator)

Hello...I wanted to get on one of these sites to share my own experience. Im from the US and have pulsitile T only in my left ear. Right ear is fine, Im 49 and normal weight with no other health conditions. It moves exactly with my heartbeat and seems to cycle in volume in waves about every 30 seconds. Sometimes it goes away completley and other times it seems to flare up and get a bit louder. I had this about 8 years ago and it eventually went away but now came back 3 months ago, worse than before. During the day I usually dont notice it much if there is noise around and I am busy but in a quiet room and at night it is annoying. I had a CT scan and an imaging scan which both were normal. Its obviously releiving to eliminate things like tumors and aneurisms. My ENT said he thinks I may have a temporal bone that is "more hollow than normal" on my left side which creates unusal acoustics but I personally find that hard to believe, especially given the inconsistency of this.

One thing which works for me is the play with my left temple area and create some suction with my ear pressure and it goes away for a while. So I am still in search of the ultimate cause, I can live with this if need be knowing its not symbolic of anything more serious but I am going to get my wisdom teeth pulled to see if that helps, I do have impacted teeth on the left side so I am hopeful.

My regular DR prescribed a water pill for me to take which reduces the amount of blood in my circulatory system, I think it might work a little but not really sure. I have also heard about certain hearing aides which can help.

I get my wisdom teeth out in about 2 weeks and will let everyone know how it works out.

I do see that most of these prior posts are pretty old, does anyone have any updates?

Boss1
Boss1 in reply to mmmgggsss

Hi there, this is 4 years down the line. It finally got diagnosed as SSCD. Superior Semi Circular Canal Dehiscence. (A hole in the thin part of the tiny bone in inner ear). Had operation in Jan. Not totally resolved but much better.

Thanks for the reply, I have already been to a regular ear nose throat DR and he couldnt find anything physically wrong. Tomorrow I go to a highly regarded specialist in Boston, Im anxious to see what he says. I also just had my wisdon teeth pulled last week in hopes that it helps, too soon to tell yet as my Pulsatile Tinnutus only comes occassionally at night.

You may also like...