Hi , new member here . I have suffered from pulsatile tinnitus for some years now
Over the last couple of years I now get a pulse in my forehead which I notice when resting . The sensation in my ears has virtually disappeared
Anybody else out there had similar experience ? The doctors are at a loss after many examinations and a recent MRI scan
Hello. I've had tinitus and hyperacusis since the millennium. My experience has been that there are very few specialists in this field. Audiology admitted to me that, often, tinnitus and hyperacusis are more to do with psychosis than hearing. That it is wat the brain does with sound. I am on clonazepam, tiny dose, and my tinitus has gone from an 8 to a 1, over a period of months up n down. I'm now taking aripiprazol, which seems to be lowering the zaps I get in my head (often from no obvious trigger). Different things work for different people, thats clear, and worrying about it or constantly trying to find the root of it can make things worse. If you check out OK physically, why not ask your doctor if its possible any anti psychotic could help you? Best wishes Jay x
I recently stared get vertigo and nausea, including a couple of bouts of amnesia and issues concentrating. Early onset dementia was ruled out and I had CT and MRI which showed nothing (luckily). As the Neurologist suggested I have FND-"symptoms", I'm now awaiting a EEG brain scan.
I've researched but I have to say I'm still not clear what it means. In lamens terms, as explained to me several times now, it's not the hardware which is the CT and MRI scans came up all-clear.
The obvious answer for me seemed to stem back to insomnia (though my symptoms - at least seemed a bit more serious and not necessarily aligned with my sleep (or lack of) patterns) and more than "just getting old" - well I'm only 49. It was very worrying.
I have no basis to say this is what you have, but it provided some interesting reading (and still trying to figure it out myself).
The FND forum on HeathUnlocked is very friendly and helpful (obviously not quite, or anywhere near, as good as this one 😁)- healthunlocked.com/fndhope
Dave, has Meniere's been ruled out? I presume so as it would seem to be an obvious culprit. I know you have tinnitus and hearing loss and the vertigo was my third symptom - accompanied by lots of vomiting.
I suggested that. I understand it's just as difficult to diagnose. Anyway the extra symptoms seemed to flag up FND. I guess they want to rule it out.
"Functional Neurological Symptoms are:Troublesome symptoms that someone wishes to understand without necessarily having a ‘disorder’ are called functional neurological symptoms, and this site is for you too."
I had to look up FND. Yes, I expect the additional symptoms do add something. Meniere's is difficult to diagnose, but you do have three of the four classic symptoms and they don't necessarily come all at once or in any particular order. But usually starts with single sided deafness. Good luck as you undergo tests. I hope you get it sorted out.
Pulsatile tinnitus is not tinnitus. ENTs and sadly many GPs are notorious for not understanding pulsatile tinnitus and try to treat it as tinnitus. There is usually an underlying reason which can, in many but not all cases be treated. The challenge is finding a specialist who understands it.
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 (subject access)
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.
You are so right. Pulsatile tinnitus is not the same as tinnitus although I’m not trying to lesson the impact of tinnitus . I’m hoping to book an appointment with Mr Axon at Addenbrooks if no joy with ENT consultant via nhs. You’re also right that scans need to be properly assessed as mine showed AICA loop which was totally missed by first radiologist. I can’t believe there is no solution for the heartbeat in my ear it’s so loud. Did you get any solution to yours? Do you mind sharing what treatment if any you had. Thanks so much as I’m desperate for something to stop the drumming heartbeat in my ear!
Yes I had stents fitted which resolved the PT immediately although it took 3 operations. Mr Axon referred me to Dr Higgins, a neuro-radiologist and he did the procedures.
I was very lucky that it was pre-Covid, in fact we went into lockdown just as I was due my last check up which was obviously delayed. But lockdown was good for me in that I could stay at home, rest up, work from home and generally not have to do more than I wanted to, without friends/family been overly concerned. It did take a while to feel back on form but then we don't realise how low the PT makes us and 3 operations in 9 months is tough too.
I was also lucky that I had an understanding GP - I think he found the condition interesting! He sorted an MRI which showed nothing, but to do an MRA I had to be referred to ENT - that showed a dural ateriovenous fistula (the cause) but ENT were pretty useless. I then found out about Mr Axon. I took a printout of his details to my GP who agreed that ENT were useless and then referred me to Addenbrookes instead. They did CTv and cerebral angiograms as diagnosis.
You are able to see any relevant specialist through the NHS, even if out of area but you will probably need your GP to support you - have a look on the NHS website for how to choose where to receive treatment. Sadly that doesn't take into account waiting times.
Many of the coping mechanisms for normal tinnitus are useful for PT - meditation was particularly useful, as were sleep stories and white noise. But I was advised early in my journey that it is important not to try to drown out your heartbeat by having the white noise too loud but to actually have the volume slightly lower as you are trying to train your brain to listen to that rather than the PT otherwise you could damage your hearing.
Good luck!
Thank you this is so helpful and gives me confidence to ask to see Mr Axon as I live in Cambridgeshire anyway. I did wonder about Stenting depending on what my next scan shows. I also found that the white noise device if too loud just beats in time with the pulse in my ear! So yes lower volume best. I will definitely check out the nhs website to see about referrals. Really useful reply and I’m so glad you eventually had a resolution. Best wishes.
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