Last year I developed what I believe to be pulsatile tinnitus after a brief period of severe anxiety. I had been referred to the ENT but I was left feeling quite disappointed after a six month wait, I had to repeat a hearing test that came back 100% correct and I only managed to talk to the doctor for just a few minutes before being sent away with a sheet of paper about tinnitus. He only performed quite basic tests that my own GP has already done regarding balance etc.
I went back to the doctors today as the pulsing is getting much worse. It's effecting my sleep very badly. I can no longer sleep with ear plugs as the throbbing becomes much louder and I can FEEL it all over my head too. I've started to get quite bad earache and constant popping/cracking noise when I swallow etc. The doctor said they "can't do much about tinnitus", not pulsatile tinnitus. Although I don't really know if there's a huge difference from a medical background. She gave me some almond oil drops to help clear a "small" amount of earwax. I've tried it and its made my ears so much worse, completely blocking my right ear.
Any help or advice would be greatly appreciated. I'm feeling quite low about it right now.
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victoria-d
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The almond oil will soften the wax, but may not get rid of it. You could see if your doctor would be able to syringe your ears. Sometimes wax can build up and it can be difficult to remove.
I would always choose suctioning of ear wax rather than syphoning and this is what needs to be done ASAP - either system. Of course the tinnitus is louder because no outside sounds can get in. As the carotid artery is right near the hearing system, that's what is being picked up - if I block my left ear I can certainly hear it - at least we know our circulation is working! Do you have a minor injury unit open near you ....or a private ear clinic - we have both in Caterham, Surrey and whenever I am in a panic about my tinnitus, that's where I get sorted out.
Hi Victoria I agree with berry that micro suction is the best option over syringing as it has been suggested that over syringing can be the initial cause of the dreaded "T", A private clinic will charge about £60 .There is nothing more depressing than suffering tinnitus and bunged up ears through filling them with oil.
Pulsatile tinnitus is not tinnitus: the latter is an incurable condition, the former is a symptom of an underlying condition which is some cases can be cured . Doctors rarely know about the difference between the two and treat them similarly. You'll get so much help and advice about pulsatile tinnitus, and how to approach your doctor about it, on this website: whooshers.com. It's the only website dedicated to pulsatile tinnitus. Their facebook page (where you can get advice from fellow sufferers) is facebook.com/groups/Whooshers/
I also suffer from it and was given a CT angiography to check for underlying vascular and arterial problems ( of which pulsatile tinnitus is often a symptom) but came back clear and they weren't prepared to do further testing and just sent me to tinnitus clinic.
Hi Nelliebligh, thank you for your great advice. I had requested to join the Facebook group sometime ago but I've had no response. As a member, can you accept my request? Thanks!
Unfortunately, other members can't accept request and you have to wait for whooshers.com to accept it. It might be worth re- applying to join group as I've found it so helpful to hear from other sufferers.
Thank you very kindly for your advice, it's great to know that I'm not the only one! If the earache persists I will get back on and get an appointment with another doctor (again!).
Hi Victoria. I too suffer pulsatile tinnitus, partial hearing loss and sinusitus. I have done for many years but as I was getting older I felt it getting worse. I was originally told at the hospital there was nothing showing to why I had this and just to deal with it and get on with it but about 2 years ago I was at my wits end and asked for a second opinion. I am partially deaf in the left ear and tinnitus in my right "good" ear. The first consultant had done an MRI scan and said everything was normal but when I went to the 2nd consultant he noticed straight away that I had a small hole in a muscle which was causing the noise to bounce back into my ear causing the heartbeat sound. I was told that they could not operate as it was too near the brain and the risks out weighed the benefits. I did see a American TV programme with a woman with the same problem and they operated but it didn't help. I went for years being told there is nothing wrong which drove me crazy but now I know that there is something that is causing it I feel I can accept it and carry on. I went through some dark times thinking I had all sorts wrong. I am limited to what excercise I can do and running/jogging is totally out, even running for a bus causes me distress. I now wear a hearing aid in my left ear and that has helped. I have had wax removed various times but it doesn't ease the noise. My way of coping is to keep positive and keep myself busy but have a work and personal life balance. I tend to fall asleep with the tv or radio on low and if I am having a bad day I just aim to get through it and hope the next day is better.
Hi Victoria, my tinnitus varies from mainly pulsatile, through to slight hissing. When I acquired T over 2 years ago, it was a whistle in my right ear, which calmed down. Then, I began to feel the T moving up and around my head, eventually settling into a pulsatile tinnitus mainly a thumping in the back of my head. This was in time with my pulse, not a whooshing heartbeat sound. I was in hell and the pain spread down my neck, back and legs. I was unable even to wash my hair in the shower as that caused great pain. The ENT consultant was useless, other than referring me to an excellent tinnitus audiologist. The CT scan (can't have MRI as I am seriously claustrophobic and I would have a heart attack if I had one of those) showed nothing wrong. But, here is the hope and positivity for you -
I had a hearing test at the NHS audiology dept and was found to have slight hearing loss in my right ear, for which I was given a hearing aid. Then a masker for my left ear. I was given zopiclone to help me sleep (hadn't slept for weeks) and mirtazapine 30mg nightly to ease the anxiety. All began to calm down and after a few months I realised that I hadn't heard my tinnitus. And, over time, those periods when I hadn't heard my tinnitus got longer - oh the bliss of those times!
And now? Well, I am still wearing the hearing aid on my right ear, but don't wear the masker unless my left ear is hissing. I usually wake up with pulsatile tinnitus in my right temple, which quietens after I have put in my hearing aid and get into the daily activities. Most days I am not aware of my tinnitus. I was weaned off the zopiclone after a couple of months and stopped the mirtazapine after 12 months. I sleep well by getting up at the same time each day and only going to bed when I am tired, usually 11pm and this is working for me. A good night's sleep is essential and then being able to distract from my T the following day. If it becomes bothersome, I have to actually do something rather than listen to it by thinking about it. So, your tinnitus will settle and your life will get better. The folk on this forum know what you are going through. Your are not alone. You will find the best possible advice on this forum and from the BTA website and people. In the current issue of "QUIET", which popped through my letterbox on Saturday, there is a real people article about a young lady who has had pulsatile tinnitus for many years.
Hope you are feeling better, love and best wishes, Angela xx
Hi Feye, ten months on and it is still the same, no better, no worse. I do feel happier though, and I have habituated. I always remember that I am not alone.
Sorry to read that you think it has got worse. I have habituated to my T in that even when I hear it I can cope. I suppose that after almost 4 years it has become my general background noise. Most days, provided I am busy, I don’t hear it but during those days when I do it doesn’t bother me, in a similar way to us all getting used to the ambient noise in our homes eg fridge, freezer etc.
I do wake up with the pulsing in my head or right ear but it begins to fade when I have put in my hearing aid. Do you have aids or maskers?
If you search through my previous posts on here you will find the ways I have learnt to live with tinnitus.
Hi Victoria. You might find it helpful to go back to your doctor and take them a couple of our information sheets. The first one gives guidance to GPs:
If you need any more information or advice (for example on your local services, again to pass to your GP) our helpline is available Mon-Fri 9-5 on 0800 018 0527 or helpline@tinnitus.org.uk
Hi I am really pleased I stumbled across this as I have just been diagnosed with pulsatile tinnitus and now know I am not alone, I have had a MRI scan which has shown nothing apart from a Carvernoma on my left frontal lobe, which was a shock. The tinnitus is in my right ear and started very mildly apart a year ago. about 4 months ago it got worse and it took 5 emergency referrals to get seen at ENT (as I had shingles down the right side of my face the doctor thought I had an auditory tumour hence the MRI),I have really struggled with it this week had no sleep and time off work its so bad. I have been discharged from ENT into the care of a hearing therapist. I phoned my doctor yesterday who would not give me an appointment till next Thursday and said she doesn't know much about tinnitus but knows there is nothing they can do! I just am at my wits end now and feel really low as I just don't know what to do. My ear feels blocked all the time and feels like its got a lump in which they have assured me it hasn't, it feels strange when I swallow as well. One doctor a few weeks ago palmed me off saying its probably ETD.
Hi Elaine, welcome to this forum- it is the best place for internet advice, support and to know you are not alone. I was in an awful dark place 2+ years ago but over time I learnt to live with the tinnitus and most days it doesn't bother me. GPs and ENTs were of little help, until I was referred to the NHS audiologist. As well as joining this forum, I joined the BTA - their QUIET magazine has profiles of other T people and how they cope and live a normal life, despite having T. I hope you have found the BTA website too which I still have a look at to keep up with the latest news. Keep positive, you are not alone and we're all on it together! Love and best wishes, Angela cx
Thank you Angela the T is really bad at the moment which ended up with me going to Guys Urgent Care as I found a lump on the side of my ear and have a red line there the doctor was so rude to me and said he couldn't see or feel a lump and started to argue with me! He said the red line was caused by me rubbing it! I have found the BTA and will be looking on there more, I am absolutely exhausted and am trying to rest over the weekend as I will have to got to work Monday, Thank you for you kind words Best wishes Elaine x
Sorry to hear of the doctors not seeming to be nice or helpful. Over the past 2+ years that I have been on this forum most of the posts have been the same - lack of understanding, knowledge and care by the medics. The BTA is my only source of reliable information, advice and support. The folk on the other end of the telephone in their office are truly lovely folk! If you can get to one of their tinnitus information days you will be surprised at the number of people there and the information and guidance you get. I went to the Birmingham one early this year, met up with a forum-friend who posts on here, and had a lovely day!
It will get better Elaine, like you I struggled when I got it, also having pain and weird goings on in my head and ears. NHS audiology understood and helped me. Best wishes, love, Angela xx
Hi Victoria I to have pulsatile tinnitus so I understand what you are going through. I have been led to believe that pulsatile isn't the same as usual tinnitus.Have you had your neck checked tight muscles and the neck being out of line can cause pulsatile tinnitus.I am having physio on my neck and I do believe that the noise is subsiding..fingers crossed.Good luck..
I have TMJ and Degenerative bone disease in Cervical Spine. I have PT with Hissing pulse in both ears, all my Tests were normal. So hard to live with this. When you don't know the cause, I keep hoping it's just my Arthritis, I can do a certain facial expression and the PULSING quietens....?
Hi. Sounds like what I am going through right now. I think it’s from the antibiotics I took last month. No idea but after 3 weeks wait to see the ent doc he now wants me to go do an audio test. Appointment in January!
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