Hello

[Abbalady]

I developed pulsatile tinnitus on 10th May, it's constant and driving me mad, I've had an MRI which is clear, what should I do next? any advice please?

[doglover1973]

Hi there Abbalady I understood it's usually a CT scan for pulsatile tinnitus. I may be wrong but it might worth asking .. Sorry it's driving you mad. That's what T does in the early days. Less so as you get used to it. We're all in the same boat here .

[Abbalady in reply to doglover1973]

Thank you, i'm three months in and it's constant, hardly sleeping.......this is not fun! how long have you had tinnitus?

[doglover1973 in reply to Abbalady]

I understand. It can be tough in the early days but it does get easier . I remember wondering if I would ever sleep again. The best thing you can do is try & relax - if possible. Do things to soothe your nerves and / or distract yourself and give yourself credit for getting thru each day. I've had T for a decade but it's only been a problem for the last 2 years. Hope you feel better very soon.

[Happyrosie]

Please, Abbalady, have a look at the British Tinnitus Association website for ideas and knowledge.

[daverussell]

I don't have much to add other than what Happyrosie and doglover1973 have advised.

Finding strategies to help you find acceptance is key. Avoid any claims to "fix" or "cure" it. Refer to the BTA website (tinnitus.org.uk).

[mgte]

Believe everyone on here.You will manage it and life will return to normal. Ish

[Hidden]

Hi Abbalady. Try using a masking sound at night, an electric fan or a sound generator app on your phone work for me. T has many causes. I had pulsatile related T in one ear which started last October. My research led me to believe it is to do with localised blood flow restrictions in and around the ear. I got fit, lowered my blood pressure and took up regular exercise, gym x 2 per week and in particular swimming x 2 per week, combined with neck exercises to improve blood flow. My T has now virtually gone, (80 - 90% free) and if it ever does reappear it is very quiet and I struggle to hear it and I no longer feel my pulse in my head. The BTA I found useful, but there are a lot of wonder cures touted on the web which are best ignored and my local GP was not much help. You are unique so try different things and see what works for you. Good luck and kind regards.Marcus

[Abbalady in reply to Hidden]

Wow that's amazing!! it's interesting that you said neck exercises as my posture (due to work) has been pretty bad for a year or so and my neck and back muscles are so tense, I have found random write ups that this could be a cause...i'm still looking into it!!

[Hidden in reply to Abbalady]

Hi Abbalady. Neck exercises are important and the jaw can also play a part. You Tube has a number of useful exercises you can follow. There is a clear link between neck exercise and the relief of T: I am living proof as I can completely stop my T for 2 or more days if I go for a swim for 45 mins doing the front crawl (which involves extensive neck exercises). I also gave up using a pillow for head support in bed when lying on my back, to get better posture. It takes some adjusting but you quickly adapt and now I prefer not having a pillow.Cheers

Marcus

[Non-Leaguer]

HI! I have has pulsatile tinnitus in my left ear for a year and a half. No doubt the first 3 months were the worst with disturbed sleep. As mentioned earlier a CT scan is the useful road to go down as it was found I had a tortuous vein in my neck which was inoperable. I coped by using pillow speakers which helped get back to a sleeping pattern while daytime has been bearable by using Shokz headphones which play music from your phone through your cheekbones(honestly). better than conventional headphones as you can still chat, hear your surroundings(traffic etc.) and even listen to radio and television if you get your headphone volume at a sensible level. Hope things improve for you and just keep active. Things will get better if you persevere. Keep in touch.

[bluebell71]

Hello Abbalady it’s hard when you begin to hear tinnitus noises, I sometimes have pulsating T although over the years I have had humming whistling roaring lots of different noises at different levels of sound. At the moment my tinnitus is humming very loud across my mind which irritates me a lot.

It will change for you hang on in there, I’m suffering at the moment these last few months have been horrendous quite tiring.

For some reason I can sleep at night probably because my T wears me out ….

Try not to stress if you can I know it’s difficult, your T will change given time, the BTA will help you,

I do breathing exercises taking a deep breath through your nose holding for count to five then breathe out through your mouth feeling the stress and tension releasing out of your body.

Also any distraction you can put your mind on really helps.

I hope in some way this helps you, all the best…

Jean

[Brianallis]

Hi abbalady yes i have big T, and i had Mri test and came back normal to, in the beggining it's worse and hopefully you get adjusted and more support it will be much better, try and get more tests, and reach out and join a few support groups, the ones Online as i have done now, the person or admin who runs the group, may come up with some ideas for you to try take Care

[Upbeatmap]

Hi Abbalady

Do you have any other auditory symptoms such as sensitivity to noise, dizziness with loud noises or a distortion in your ears when you speak? I ask this because I developed Pulsatile Tinnitus 10 months ago and the first doctor I saw gave me an MRI scan, told me there was nothing wrong with me and sent me on my way.

I then saw a second doctor and when I told him about the other symptoms I had as well as the PT, he suspected it was something called SSCD which only shows up on a CT scan. He was right and I have now had surgery on both sides. While it has not completely cured everything, it is better than it was.

I am also learning to live with it better and find that I am ignoring it a lot of the time.

Good luck

[TinnitusUKPat Partner in reply to Upbeatmap]

A very good point. Although Superior Semi-Circular Canal Dehiscence is a rare syndome, tinnitus is one of the symptoms of it. It underlines the importance of not seeing tinnitus as the primary issue but often an indicator of an underlying condition - that's the thing which can be improved and treating it may also have a positive effect on how problematic tinnitus is afterwards.

[Abbalady in reply to Upbeatmap]

Hello...I haven't had what you describe but last Thursday I went almost deaf in my left ear and when I spoke, it was vibrating through my cheekbone, it lasted 24 hours and was really scary. Can I ask what SSCD is?

[Upbeatmap in reply to Abbalady]

Hi. It stands for Superior Semi-Circular Canal Dehiscence. It is where you have small holes in your temporal bone which sits below your brain and above your inner ear canals.

It can cause a multitude of issues including tinnitus. There are surgical solutions which seem to have variable results.

[Abbalady]

Thank you so much everyone for taking the time to reply, it means a lot!

[daverussell]

Wishing you the very best. Although we have various reasons for our tinnitus, remember you're not alone. This is a great forum, which both reading and contributing in itself is one of my coping strategies.

[Happyrosie]

Just a quick comment on neck exercises and so on. For me, the tension in my neck, shoulders, upper back etc was relieved by osteopath and then physiotherapist, with ibuprofen when worse. Whilst it did nothing for the tinnitus, anything that gets you less tense will be helpful in relieving tinnitus I think.Each to their own!

[JEHSPORT]

It is important to understand that Pulsatile tinnitus is not tinnitus. Normal tinnitus has no cure only coping strategies.

Pulsatile tinnitus requires a full work up to establish the cause, which is often but not always vascular. ENTs are notorious for not understanding that PT is not tinnitus and they try to treat it as the latter.

My ENT had an MRA scan report that clearly stated I had a Dural Arteriovenous Fistula (Davf) but still tried to treat it as tinnitus. It was only when I joined this site and the Whooshers facebook page that I found out about Mr Axon at Addenbrookes. One appointment with him and I was referred for CTv and cerebral angiogram which confirmed the diagnosis. Embolisation and stenting followed, which 'cured' the PT.

It really depends if the person reading the scans knows what they are looking for and if they do identify the issue, whether the medic treating you understsnds PT.

One note of caution. The medical profession hate 'Google'. They think we believe everything we read on the internet- probably some do! Only quote trusted sources such as the BTA and the facebook page I mentioned.

Do look into coping strategies but they are just that, not a cure. I used white noise apps, bedtime stories, meditation. Dont try to drown out your PT by having white noise too loud or you may damage your hearing. You are trying to retrain your brain to listen to the white noise instead of the PT so have the volume just lower than your PT. Bizarre but it does work.

In the same way, keep doing the things you enjoy - you will find it will distract you and you wont 'hear' your PT.

Stay in touch with friends and family, talk to them about it but be prepared that they wont want to hear about it all the time. Eat well, exercise, be kind to yourself.

Feel free to search for my previous posts.

Take care.

[Abbalady in reply to JEHSPORT]

Thank you that is really helpful, I am find it so frustrating re the lack of medical knowledge regarding PT , I went to a private ENT specialist and had an MRI, something that came up was an enlarged jugular bulb (I am just picking one example). On an American website it stated many reasons for PT, one being an enlarged jugular bulb leaning slightly on the ear canal. I repeated this to the consultant but it didn't seem to be understood. I was told that there was a professor in Harley Street that has an interest in PT and he would be the person to look into this a bit further as it seems that the nhs or Private don't explore in too much detail?

[Abbalady]

Is the Whooshers group on Facebook the one with 10k plus members? I presume it's all countries? Thanks

[JEHSPORT]

Pulsatile tinnitus whooshers unite - its a US site but more and more .UK members now. I seem to recall someone in Harley Street being mentioned but c3ant be sure. Mr Axon takes private patients as well.

It is sad that many medics dont understand PT. Some people recommend referring to it as a bruit (check pronunciation on google!)

You really will have to advocate for yourself until you are sat in front of someone who does understand.

Be kind to yourself, good luck!

[Abbalady in reply to JEHSPORT]

I have got a bruit....apparently!

[Strivingtothrive101]

Find a doctor who takes you seriously. I have had MRIs, MRA. ENT did hearing testing, treatment for sinus issues (it wasn't my sinuses). ECCO, Stress test, CT Scan, carotid scan, visits with Neuro-opthamologist looking for IIH. Next step for me is a cranial angiogram w/neuro surgeon. My bi-lateral pulsatile tinnitus started out of nowhere Dec 2018. I have it 24/7. The first year was the worst. I finally found the Whoosers Facebook group, and there's another pulsatile group, and it was a great resource, and also very comforting to find others who experience the same symptoms. Good luck in your quest for a diagnosis. You're not alone!

[Abbalady in reply to Strivingtothrive101]

Thank You so much for taking the time to write this, it seems to have got worse so I am trying to find a specialist, I can only find two in England and one in New York!!! I have joined "Pulsatile Tinnitus sufferers" on Facebook but there doesn't seem to be much interaction! How do you find all these people that you have seen/are seeing. is it all referrals?