Pulsatile Tinnitus

[MrsAitchbee]

Hi there was diagnosed with PT about six months ago. Saw ENT and had a CT Angiogram. Didn’t show up anything so basically was sent home . I notice it gets worse with stress and sitting reading quietly it gets very annoying . I joined Whooshers but to be honest a lot of the help and Info is for people from America where their health systems etc are different to ours . Reading peoples stories actually terrified me because I don’t know if I should accept what the ent said or should I be searching for an answer . If people are finding a diagnosis then should it be pursued or can you have PT and it be a completely harmless but annoying thing .

[ShakeelaBTA]

Hello and welcome to the British Tinnitus Association forum.

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

tinnitus.org.uk (information and support details)

takeontinnitus.co.uk (free tinnitus management programme)

Helpline 0800 018 0527 (Monday-Friday 9am-5pm) (outside the UK you can call [phone])

Kind regards

Shakeela

[TurkishLady]

Hi,

My T started 3 months ago. Actually I noticed my T after my Husband had been diagnosed with Meniere Disease. Now I think, I always had some Tinnitus but never gave it my attention, until my husband talking about T.

Somewhere I read," Everybody hears very low noise, as you give it your attention, it gets higher as your brain focuses there more, and it goes on and on. Until my husband, I even haven't noticed it !

But I will try r-TMS treatment this summer in Istanbul.

I will write here the result.

[DownUnderInAus in reply to TurkishLady]

Hi Turkish Lady, The same sort of thing has happened to me, I have heard a pulse in my ear (from time to time). The last time I heard it I "tuned in" to it, searched the internet for answers and now hear it most of the time..., I wish that I hadn't searched for answers...!

[Bob2a]

Hi

See if you can get an appointment at Addenbrookes Hospital with Mr Patrick Axon. He is an expert in Pulsatile Tinnitus. I thought I had Pulsatile Tinnitus as well as Tinnitus. When I described the sound I was hearing as a high pitched ringing in time with my pulse that was the same sound as my Tinnitus and that I could increase and decrease the volume of Mt Tinnitus by moving my jaw and neck he diagnosed me with Somatic Tinnitus with a Pulsatile element. Unfortunately he had not had success in treating this so no further treatment was recommended. At least you could get a proper diagnosis.

Good luck with whatever you decide to do

[Bridgettt in reply to Bob2a]

I have that too and saw mr axon. Have had lots of tests so pretty sure nothing serious is wrong but it is annoying. I think I have burning mouth syndrome too. Am having treatment from an osteopath and started to go to Pilates and both have given me significant improvement. Mine is much worse lying down... feels like I am pushing something too close to my carotid artery. Hope this is helpful

[DownUnderInAus in reply to Bob2a]

Hi Bob2a, I suspect that I have the same as you. I hear a pulse in my ear in time with my heartbeat. I can increase or decrease the volume of this by moving my head up, down, left and right. I can also stop the noise by either sitting (straight) in a chair or standing and looking straight ahead. I have had neck and shoulder strain for about 8 months but the tinnitus has just appeared, strange...?

[Bob2a in reply to DownUnderInAus]

Yes, I had neck pain and aching shoulders for some months before my Tinnitus started. The GP put it down to stress at the time but I feel it is connected. I had whiplash from a bad car accident many years ago and think it is all linked. If the pulse you hear in your ear is more like a whooshing sound then it could that you have Pulsatile Tinnitus. Mr Axon said mine wasn't actual Pulsatile Tinnitus because it was a high pitched noise of the same tone as my Tinnitus rather than a whooshing sound rather like the sound of a baby's heartbeat on an ultrasound.

[DownUnderInAus in reply to Bob2a]

Bob2a, Thanks for the info. Regards Ian

[Maisie1958]

Hello MrsAitchbee

My unilateral PT came on suddenly last July, so loud! Luckily I had kept on my private health insurance-had a MRI/MRA etc and blood tests (all clear) arranged by a fairly disinterested ENT consultant, was referred to a cardiologist as detected a heart murmur-not a problem-he arranged a CTA of neck and chest as could hear a bruit-bizarrely on other side of neck to the PT. Nothing seen -I decided against any more tests as seemed most of the serious stuff was ruled out. I agree reading Whooshers can get scary! Happily almost six months later the PT vanished as suddenly as it started. It came back again for about 6 weeks a few months later but has been completely absent for a good 3months now. It’s certainly horrible when it’s present.

Sorry no advice and I have no idea what caused mine or why it stopped (hopefully for good this time) but hope yours disappears too. Addenbrookes seems to be the place to go if you want it investigated more.

All good wishes.

[singh5 in reply to Maisie1958]

Hi,

Your PT story is quite similar to mine. No underlying cause after many tests. My PT vanishes for 5-6 days and comes back suddenly. But i have noticed that a dietary change can be helpful. My ENT suggested lots of probiotic in my diet as it helps in brain function. I can definitely see a difference in my T since i started having probiotic this week. meditation helps too.

Further, i started intermittent fasting and that seems to work. I read somewhere inflammation in the body could also be a cause.

For me reading whooshers led to aggravated episodes of PT as i got so scared and nervous.

[Chakr1 in reply to singh5]

Hi can i ask what probiotics do you take ? X

[singh5 in reply to Chakr1]

Hi i just include yoghurt fortified with probiotic once a day. No need for for capsules. Keep it as natural as possible. My ent also asked me look out for triggers. Cutting back on alcohol and junk food is also helping.

[Chakr1 in reply to singh5]

Thankyou for your reply, will try this i wonder if capsules will help as im not good with yogurt, ive had t for the past 5mths its mainly in my head then now again both my ears, ive changed my lifestyle diet, cut right back on alcohol and caffine, seems to be so up and down and cant really gage any triggers i feel like its took over my whole life trying to find what works best to keep at a low level and to help it go, exceptance is the hardest thing, im meditating and doing yoya which help to relax me, overtime fingers crossed it will calm down, i also have aid maskers due to mild hearing loss which help when its really bad, its hard to know wether your doing right or wrong patience is possibly the key something im not the best at x

[singh5 in reply to Chakr1]

I completely emphathise and understand this. Its completely consumed my life too and it is such a lonely feeling. Try not to think about it as much as you can. My ENT is of the view that this affects usually anxious and high strung people more severely than others and i am definitely one! See what suppresses the noise and the pitch. For me it is when i actually make an effort to not think about it. The relief came when there was no abnormality in my MRI. I think it is time to count our blessings. xx

[Chakr1 in reply to singh5]

Yes your right, i try and always see the positive some days are harder than others one day at atime, my mri was normal too thankfully xx

[Maisie1958 in reply to singh5]

Hi that’s really interesting-I have polymyalgia rheumatica and the symptoms respond to small doses of oral prednisolone. The PT did seem to start when I cut back the steroids a bit too much, possible link with inflammation? Though no sign of active vasculitis on the scans I had done fortunately. What is strange the first time it stopped was several days into a holiday in India when I had been taking probiotics in capsule form for about a week before to try to prevent any GI upsets-It worked but didn’t expect my PT to go too! Thank you.

[singh5 in reply to Maisie1958]

It could be the climatic and altitude change too. I have recently moved from India to Canada. I never heard PT in India. My ENT thinks that it could be the harsh winter here. These are all theories when no vascular abnormality is found in the body. Here in Canada there is a PT MRI protocol to diagnose the issue. Mine came back normal. I have had PT for 3 months now.

[Maisie1958 in reply to singh5]

I need to go back to beautiful India 🇮🇳

[DownUnderInAus in reply to singh5]

Hi Singh5, "For me reading whooshers led to aggravated episodes of PT as i got so scared and nervous." I found the same thing, the more I read the worse my PT got, in fact if I'm inVolved with something the PT stops, but if I'm anxious about it it's worse...

[singh5 in reply to DownUnderInAus]

Exactly! it is anxiety related and it is a way of the body telling us to take it easy. Do not read much about it. If your MRI is normal try to figure out your trigger. Seek help from a family member if you are not able to think clearly what is trigger. I tell my husband each the PT time gets bad and he and I go through the day thinking what could trigger be. It could be as simple as a bad posture to a bad pillow for me.

[DownUnderInAus in reply to Maisie1958]

Hi there Maisie, I'm happy to hear that your PT has gone...and hoping that mine goes soon...Cheers Ian

[Maisie1958 in reply to DownUnderInAus]

Thanks Ian. I have no idea what caused it or why it stopped, hopefully for good. I had no other symptoms and had quite a lot of investigations ( private health insurance-I’d probably still be waiting for an appointment with NHS) but it was certainly loud and there all time. You don’t get much sympathy with PT but it’s definitely unpleasant!

Hoping for silence for us all.

All good wishes.

[Maisie1958]

PS MrsAitchbee -looked at your profile-wondered if your thyroid levels were ok? I was told either hypothyroidism or more likely hyperthyroidism could be implicated in PT. I’m sure you’ve had those checked recently but just a thought.

[DownUnderInAus]

I hear you there, there's a lot of gloom and doom out there, that will scare you. I try to remain positive about it all.

[JEHSPORT]

My PT started gradually about 2 years ago but progressively worsened to the point that it affected my whole life. GP was great - he ordered the MRI which ruled out some of the potential nasties. He referred me to local ENT who were awful - treated it as normal tinnitus, wasted 4 months by referring me to a specialist who was no longer practising and even when they discovered this didn't tell me. They did however order MRA which showed a dural arteriovenous fistula. Through Whooshers I discovered Mr Axon at Addenbrookes. My first appointment with him was mid November last year. He ordered CTV and cerebral angiogram which both confirmed the diagnosis. Had the fistula embolised just before Easter and the PT disappeared immediately. I agree that some of the posts on whooshers can be irrelevant (and scary!) but without it I would still be suffering. Many doctors just don't understand PT and far too many sufferers are told to 'live with it'. There are a number of different

causes of PT - a full work up by someone who understands it - like Mr Axon- is essential for a proper diagnosis.

[singh5 in reply to JEHSPORT]

Hi this is great news. What MRI were you recommended? and did you have any other symptoms? For PT, did you have any moments of relief for the 2 years that you had them or was it continuous and loud?

[JEHSPORT in reply to singh5]

Hi, I have suffered from bouts of dizziness for over 20 years. I was told originally it was labrynthitis. These were diagnosed as migraines about 7 years ago. The PT started quietly but became progressively worse. My last migraine was about 4 months after the PT started and afterwards I was whoosh free for about a week. The only other times it was hardly noticeable, but still there, was when I was on 2 holidays last year, both of which were on boats so always had some background noise of the engines. Otherwise it was loud, continuous and towards the end I had quite a lot of pain too. Not sure what you mean about the MRI?