HI, I am a 37 year old male and I have suffered with pulsatile tinnitus since 2012. i'm looking for some guidance please on what I need to be asking for from my GP.
I feel I am not getting the correct tests/consultations as every doctor I see doesn't seem to get there is a difference between pulsatile tinnitus and tinnutus (my surgery never has the same GP so I have to restart every time I go, some even google what it is as they have not heard of it, which fills me with no confidence). My left ear is affected and recently it got unbearably loud and having difficulty locating my phone when it rings and barely hearing conversations.
Having had some really poor experiences of ENT and Audiology, I went to see a private audiologist recently, who also worked in Audiology for 15 years. He was concerned that this was being treated as purely tinnitus and that some of the underlying causes don't seem to have been checked. When I read online ,both NHS/Australian/American medical sites, they all seem to contradict each other. I want to know what tests I should be requesting and why if anyone could please help as my GPs don't seem to get it. What has occurred so far:
1 - in 2012, after leaving the gym I noticed a heartbeat in my ear, which didn't go away. I went to my GP, who used a stethoscope and said he could hear it very loudly. This suggests, from my own research, objective pulsatile tinnitus.
2 - referred to ENT audiologist, he didn't speak much English so via Google Translate he told me to try a saline nasal spray for a few months and perhaps a neck massage. Nasal spray did nothing, didn't get a massage. Hearing test, slight conductive hearing loss, but nothing major. I tried to point out that if the sound was played in between heartbeat noises, I can hear it, but, this wasn't listened to).
3 - In 2014 - different GP also put me on the same nasal spray and also some medication (which turned out to be for schizophrenic patients (which I definitely don't suffer with but to be fair the paperwork in the medication did say it could be used for ear issues)). She said she worked in ENT for 15 years. This did nothing, medication made me zombie like. Sent back to same ENT audiologist in point 2, who then found a bit of wax covering my ear, like a piece of dead skin, and removed. My hearing improved but tinnitus was still there. Same hearing tests conducted again, same results.
4 - Moved area, new GP in 2016. Explained I was having worsening pulsatile tinnitus, he googled it also, and then sent me to ENT. This time I had an MRI and sent for hearing test. I was told nothing was found on the MRI and same hearing results as above. They did give me a leaflet on living with tinnitus.
5 - 2018 a month ago, started getting really bad pains in muscles in left and back of my neck. I went to see a private audiologist. He said he was concerned that pulsatile tinnitus in one ear was a redflag that something might be wrong with my vascular health and the pain in my neck and that this should have been fully explored, and definitely not just be given a leaflet on tinnitus. I went back to my GP, who referred me to a tinnitus clinic at my hospital, which I go to next month, but they said they aren't specialists in pulsatile tinnitus, just tinnitus. I got to see the referral letter to which my GP put as symptoms eczema on my right hand and low self esteem.
I feel I have not been dealt with correctly, partly with me moving to a new area, partly due to miscommunication via Google translate. I am now at a point of insisting I get x,y and z tested, but, I don't fully know what x,y or z is. Does the above sound right to you guys or should I be pushing for something else? Are hearing aids available/any use? I can sleep fine, which I see on websites seems to be a difficulty for most people with PT.
Sorry for the long post...I am quite distressed by all this and when my vascular health was mentioned, I am determined to get some better answers.
Thank you for your post and welcome to the forum. My name is Jess and I work on the Information Line for Action on Hearing Loss.
We are sorry to read about the difficulties you have been facing with getting the right support, I hope the information below helps.
When you returned back to your GP after seeing the private audiologist did you mention that they had indicated a concern with your vascular health? Did the GP discuss doing a referral to a specialist to investigate this further? If not we would encourage you to return to discuss this further and see if a referral can be arranged.
Also, do you know if the private audiologist has a NHS practice? If they do you can ask your GP to refer you to continue your tinnitus treatment with this specialist but on their NHS list. They will be able to assess you for hearing aids to see if you are suitable for them. Some people with tinnitus have found getting hearing aids very helpful as they enhance the sounds around you which you can then turn your mind to and not focus on the tinnitus- you can also ask for a tinnitus masker to be put on the hearing aids to see if that would also help.
Have you explored any other tinnitus treatments and therapies such as Cognitive Behavioural Therapy or Tinnitus Retraining Therapy? For a lot of people these can also be really affective. CBT will look to turn any negative associations you naturally have with your tinnitus into more positive ones meaning you'll be less stressed and more relaxed about your tinnitus. This in itself can have a positive effect on the level you experience tinnitus as it can be linked with stress. TRT is a form of sound therapy and will teach you techniques to be able to focus your minds attention on another sounds whether it be your favourite piece of music or just the sound of a ticking clock. It is not to drown out the sound of the tinnitus but by drawing your attention to a different sound, for a lot of people, their tinnitus can decrease in intensity. They are available through a Hearing Therapist at hospital, although not every hospital has the specialist, your GP can find out which hospital closest to you do so they can refer you.
There are also different products available to help you achieve this. You can read more via our tinnitus publications here.
I hope this helps. If you are still not confident and would like a second opinion from another ENT specialist you can request your GP to do a referral.
If you would like to contact us directly please feel free to call our tinnitus helpline on 0808 808 6666, we are available Monday-Friday 9-5, or alternatively, you can email email@example.com
Hi Jess, thanks for replying.
The private audiologist used to work at the Audiology department at the hospital I attend so was concerned that the full exploratory stage hadn't been conducted. I have an appointment at a tinnitus clinic at the hospital at the beginning of November so I will bring up my concerns then. I am told I will have CBT and sound therapy discussed with me...I actually have a degree in this subject so I know it well, just not specific to tinnitus. I think I will need a hearing aid, if anything to help me "balance out" my hearing, if that makes sense. At the moment I feel very off-centre and finding it difficult to locate my phone when it rings and conversations are a real difficulty.
I am in a lot more positive mood since posting. I have started a program to both improve my diet and vascular health, alongside looking into breathing/meditation. Whilst I have some time off work I think this is a positive step forward.
Thanks again, Jess.