Pulsatile tinnitus

[penelope2]

Hi there. Does anyone else have pulsatile T. Mostly it comes and goes, always one-sided as the T is that side. I can make it go away by turning my head to the opposite side. But when i turn it back the T comes back. Shrugging my shoulders helps as well as stretching my neck. Have spoken to the doctor and she said it is nothing to worry about. I've had T for about 8 years, have vestibular disorder and have a hearing aid to help my balance. Yet I feel its not OK and is something to worry about. Could it mean that the blood supply to the brain is affected? It is so hard to get an appointment with the doctors now. I appreciate any insights.

[Happyrosie]

the best information about tinnitus is on the website of Tinnitus UK. There, you’ll find stuff about Mr T’s good friend Pulsatile.

When you’ve read it do feel free to come back here and we can hope that other sufferers can give some tips. Over the years, there have been plenty of posts here about it and you can have a look, but they might be hard to track down.

If you don’t have any replies to your post you can be fairly sure that the sufferers feel better and don’t need to come to this forum!

[penelope2 in reply to Happyrosie]

Thank you for your insight.

[Philip6]

Hello, there’s a website for people with PT, you may find it useful. whooshers.com

[penelope2 in reply to Philip6]

Thanks Philip. Unfortunately the research here is quite old and does not seem to relate to what I have.

[PhilW60 in reply to penelope2]

I'm sorry it wasn't helpful

[JEHSPORT in reply to penelope2]

The wooshers face book page is very active although it is based on the US but there are is a growing community from the UK.

[PTNewbie]

Hi there

I also have pulsatile tinnitus and experience it very similar to you, one sided, comes and goes and turning my head a certain way makes it quieter or louder. At times mine has been very pronounced, loud and distressing. I too thought it must be something serious.

I referred in to ENT (though this took a long time to get to this point - first experiencing this in around March 2022 (my memory is hazy with timelines). ENT sent me to CT scan with contrast and I also went to audiology. CT scan came back normal as did hearing tests. Soooo I’d been told nothing to worry about and to learn to live with it.

I took this quite hard as though I obviously didn’t want it to be anything sinister I did want there to be an obvious cause that could be treated.

It’s a catch 22 as the more I worry and stress about it, the worse it gets. So a huge psychological aspect to this.

What I found helped me is talking about it in counselling, a CBT based app called Oto and this forum. The note I’ve learnt about it the less I worry and the quieter is has gotten. I went from feeling like I couldn’t live another hour with it, to not noticing it unless I think about it or I’m stressed with other things.

I’ve also started taking a folate supplement, early days but seems to make an improvement (I have previously been folate deficient with blood tests and tinnitus is a symptom of B9 folate deficiency). I did ask for more bloods to be taken to see if I am still deficient but not heard back from GP so I took it upon myself to order folate from a company called PuroLabs (after some research best one).

I’ll be posting on here after a few more weeks of taking it to share my outcome / experience so far. Good luck finding what works for you. It’s no fun pulsatile tinnitus!

[PTNewbie in reply to PTNewbie]

*the more I’ve learned

[penelope2 in reply to PTNewbie]

Thank you. It's reassuring that someone has this as well. I will look into the B9 that is interesting. Please let us know how it goes.I have a HA one side to help my balance, so it helps with discomfort when travelling over speed humps. Do you get this too? Hard to explain but like a feeling of movement in my ear, again one sided that is uncomfortable rather than painful.

Thanks for replying.

[PTNewbie in reply to penelope2]

I’ve just had blood test results and along with my folate B9 levels (having been very low when I first developed PT) I also have high cholesterol. I’ve researched this some more… so for me I think this is where I’ll put some focus. I don’t get the discomfort or wear HAs. I’m just going to start eating healthier, exercising and continue to take the folate supplements and see where that takes me. The folate does seem to be making a difference already x

“High cholesterol and triglyceride levels in the bloodstream play a significant role in the development of tinnitus, hearing loss, and vertigo.”

Source: journals.lww.com/njcp/fullt....

[penelope2 in reply to PTNewbie]

Good luck.

[PTNewbie in reply to penelope2]

You too x

[Shantelle00]

Hi,

The same happens to me. I can control the pulsatile tinnitus by pressing on my neck and turning my head to one side. I was seen by ENT, that was all clear. I had an MRI with and without contrast about two weeks ago. I am waiting for the results. I have looked online and come across high jugular bulbs and venous tinnitus. However there is not much information on it. Maybe it is not that common.

[JEHSPORT]

ENTs are notorious for not understanding pulsatile tinnitus and try to treat it as tinnitus. The scans results are only as good as the person looking at them. You can get copies if your scans from NHS at no cost to you. Then find someone who understands the condition. One of the top specialists used to be Mr Axon at Addenbrookes but not sure, post pandemic what the situation is with referrals as I was treated before covid thankfully.