Bitten the bullet

[hollyrain]

I don't understand why GPs have (well, certainly mine) so little interest in pulsatile tinnitus. For the second time in a matter of weeks I ended up leaving the practice in tears as a different GP just looked at me like I was mad, kept moving away from the subject of PT, and focussing on something I hadn't gone with. I asked him if he could expedite any investigations whilst I wait for my ENT appt which I have been told will be late summer 2024, but he wasn't interested. I even said I'd pay.

I am worried about the change in my PT, its gone from just when I lay down, through my right ear (although to be fair I can't lie on my left side) but quite a "smooth" noise....to for the last few weeks being so loud, very distorted and literally 24/7, when I am sitting, standing, walking, and it feels like I have a big glass bowl over my head that the sound is following me around. Other sounds are very distorted too - the other night whilst trying to get to sleep I could hear another noise which was really bizarre - had to get up and wander around to realise it was raining outside, but the sound was so distorted like it was bouncing around in my head. Increased pain left ear, left side of neck and headaches. He wanted me to take propranolol which I don't want to do.

So I've reluctantly bitten the bullet and booked a private consultation with an ENT specialist, so I can speak to somebody who should be au fait and at least understand what I am asking him about. If he says at the end it will be fine to wait, then I will be happy to do so. At the moment I feel I'm spiralling totally, concerned something could happen. 10 days and I can speak to him. I've not been able to speak to anybody who appears to understand or even care, since this nightmare began.

[Philip6]

Sadly I think most GP’s are dismissive of any kind of tinnitus. I’ve seen several GP’s over the years and none have been at all helpful. I think sometimes, because there’s nothing they can do, they are embarrassed and try to change the subject. To be honest I’ve not found ENT any better either. Hopefully you will get to see a better one who can help you. You can buy a masking machine that might help you sleep, and there are many phone Apps for tinnitus. I hope you soon feel better.

[hollyrain in reply to Philip6]

Thank you Philip

the more I read, sadly the more I agree. I felt ashamed at crying....all the way home too....but I just felt "dismissed" and not listened to. Again. I wanted to say to him maybe if you had my head for 24hrs, you'd be more interested. But its better to keep quiet because I still need to have a GP!

I use an app on my phone, which I play overnight but have no idea what volume i need to play it at but I do find it enables me to nod off. White and pink noise and heavy rain, although using that less as rain is becoming quite distorted.

thank you for your response, I hope things are going well for you 😊

[TinnitusUKPat Partner]

Hi Holly

I would suggest that, rather than being uninterested in your pulsatile tinnitus, the suggestion that you try a beta blocker is very much a direct intervention on the part of your GP to try and improve this situation by tackling an underlying factor in pulsatile tinnitus - erratic or changed blood flow.

There's an instructive case study here online published in the Brazilian Journal of Otolaryngology - bjorl.org//en-pulsatile-tin...

Is that a one-to-one analogue with your case? I can't say - I'm not a doctor. But it would seem that your GP is doing something practical here to support you and mitigate the impact of pulsatile tinnitus.

[hollyrain in reply to TinnitusUKPat]

Thank you so much Pat, that's an interesting article (although I'm not medically trained so only pulled out the clear messages such as the final paragraph). I was dubious because my heart rate isn't fast, its only about 62, I was concerned at that slowing down. But I will give it a go to see if it helps.

thank you again 😊

[RobWG]

Hi

My current GP has been very sympathetic and helpful with my T and a separate set of symptoms I have with head pressure and face tingling etc. Currently waiting to see ENT and neurology. Also as a positive note, the audiology dept at my local hospital has been fantastic and very sympathetic to T with advice and clinics.

This is distinctly different from previous GPs and also unfortunately the first ENT consultant I had a call with whose advice was T is like a new pair of shoes that don't fit but you get used to it and that pearl of wisdom cost me £250.00.

I took the initial lack of interest from the GP and ENT as a sign they felt there wasn't much they could suggest or do to help, they have done more though as new guidelines for GPs confirmed.

Hope you get some help.

Regards

RWG

[hollyrain in reply to RobWG]

thank you for your reply, RWG.

Attitude towards T is so frustrating - your audiology dept sound brilliant!! 👏👏 Could I ask please was it your GP who referred you to see Neurology as well as ENT? I have seen so many posters who have seen Neurology, but as my GPs were so unhelpful I didn't ask because I was so upset (and I also wonder if they think you are questioning their clinical decision making). My referral was done by the Audiologist. I am going to ask my GP surgery to print me a copy to take with me next week.

I had a real panic attack last night because my PT ramped up again, I felt I was in the tardis about to take off!! I have read the NICE guidelines (and will refresh myself again before I go to see the ENT consultant next Friday) - is that the same as the guidance to GPs that you refer to?

Wishing you all the best, I will look out with interest to see how you fare at your appointments

Best wishes

Holly

[Hylda2]

I have had tinnitus for years and then pulsatile tinnitus joined the mix. As I have a pacemaker there are times when that is all I hear clonking away.

I am lucky, my hospital has a tinnitus clinic and they provide me with hearing aids. The ENT consultant also examined me and sent me for a CT scan of the head to make sure nothing was happening. Some people on here have had an mri scan.

[hollyrain in reply to Hylda2]

thank you for your reply Hylda2.

Listening to your pacemaker must be a very strange thing!! 😲 It sounds like your local teams are offering a really good service. Do you know the cause of your PT?

Wishing you all the best

Holly

[Hylda2 in reply to hollyrain]

Like a lot of people nothing was found after the CT scan. I have AF and an underactive thyroid. Who knows

[Upbeatmap]

Hi Holly

It is definitely worth doing some research on the ENT you are seeing to find out whether they specialise in Tinnitus or related conditions as, just because they are private ENT, it doesn’t mean they are all better than your GP.

When I first developed pulsatile tinnitus, the first private ENT I saw was quite dismissive and very unhelpful. I then sought a second opinion and that ENT took it seriously and eventually diagnosed me with a condition called SSCD, which resulted in 3 operations.

Good luck

[hollyrain in reply to Upbeatmap]

thank you for your reply Upbeatmap!

I read all the profiles of the ENT consultants, there were only 2 who mentioned Tinnitus, and the one I chose had what I thought to be a better training record (and a kind face - and after my GPs, I want to see a kind face 😂)

Other than that I really don't know how I can do it - I went through so many options in my area and extended it somewhat, but I entirely take your point on board. I'm glad you got your condition diagnosed - can I please ask how you are doing after your 3 operations?

Best wishes

Holly

[Upbeatmap in reply to hollyrain]

Hi Holly

It sounds like you are the right track with how you have researched ENTs. I wish I had done that before I saw the first one who was cold and unsympathetic and just pointed me to a Tinnitus website.

Unfortunately, the operations I had weren’t very successful. While some of the SSCD symptoms are marginally better than they were beforehand, they are still very much present, including the pulsatile tinnitus on both sides (I am essentially hearing my cerebral fluid pulsing with my heartbeat). The operations also left me with dizziness when I move my head in certain ways and some loss of hearing.

Last year I saw one of country’s leading experts in the condition and he told me that I’m never going to get better so I should focus on living with it all. Apparently, those with SSCD on both sides tend not to have a favourable outcome from the operations compared to those that have it on one side.

Because of this, I decided to semi-retire and focus on getting fit, healthy and as happy as I can be while learning to live with it. So far it’s going ok but I still get tired and frustrated with it all sometimes. I’d pay a lot of just a day of silence.

Good luck with your ENT appointment and I hope you get a good outcome. Bear in mind that there are loads of us living with tinnitus and, even if you don’t get it resolved, you will learn to live with it and move it into the background of your consciousness at times.

[Jojo313]

It didn't work for me, just turned me into a sloth, ENT aren't interested in us sufferers with tinnitus or pulsatile they just push pills at us, especially antidepressants, many of which are known to irritate or cause tinnitus!

[hollyrain in reply to Jojo313]

Thank you for your reply Jojo313, I'm sorry you also seem to be experiencing difficulties accessing health care providers who are interested in your clinical presentation and want to help. I won't take antidepressants as I've had them before and the weird head they gave me is not what I want to be experiencing with this awful head I have now with the PT and head pressures.

How are you doing?

Best wishes

Holly

[Tlflom]

Tinnitus is tough to treat, and many docs just don't want to get into a likely no win situation. Mine is from the upper neck. I have a super great chiro and she can vastly improve it. A crank and yank chiro can cause it or make it worse. For some patients it is a warning to stop, listen, and pay attention. Believe me, no one wants to be the this last type. At one point a healer helped when nothing else was getting it done. Just keep one foot in front of the other trying different things. I wish you the best in your journey.

[hollyrain in reply to Tlflom]

Thank you for your reply Tlflom, I'm glad your chiro is helping you.

I have a worry mine is from my neck - the same neck discomfort that I have had for over 3 years, left sided, which has left me with worsening parasthesia in my fingers - all on the left side, which is exactly where I have the ear pains, headaches and the worse T screech. I had an MRI which was negative of anything - but interestingly I got a copy of the report recently and it was looking at my C-spine and not the neck at the left ear area. So useless really.

Best wishes

Holly

[PABLR]

I have pulsatile tinnitus intermittently and the one thing that I had done was an MRI to rule out any physical problems. They found a small vascular loop which poses no threat of anything which was good. I think that doctors and even ENT specialists are, in my case not dismissive, but really don't say much when I mention it, because essentially there is so little they can do especially as I am coping with it after having had it for many years. But there's nothing to treat the tinnitus itself, but only treat you so that you can deal with it better. Before you see the specialist I would read as much as you possibly can about tinnitus, its causes, things that can be done to alleviate the role it plays in your life, therapies, anxiety meds etc, so that you go as well informed as you can be. It will make a big difference when he starts talking about things if you have some familiarity with what he's talking about. It also enables you to ask more meaningful questions.

[hollyrain in reply to PABLR]

thank you for your reply PABLR, that is really sound advice.

I have read the NICE guidelines and will do so again, but I will look at articles as you suggest. I'm not keen on medication, I don't like feeling out of control which I have found in the past with various medications for anxiety.

Meaningful questions - I went with questions for my GP but made to feel so much a waste of time I couldn't ask anything for crying. I basically want to know the cause - everything is left sided - the pain, earache, the echo of my own voice, 90% of my screeching T, the neck discomfort etc. The right side ear gets occasional earache, doesn't feel clogged as much, and screeches intermittently, although the PT was just when I lay on my right side initially, but now is when I am upright, walking, sitting, day or night, and is magnified so much it feels like it is through my whole head, and lying on my left side doesn't give me any relief. My head feels literally like it will explode, so my main question is to establish the cause and look at what can be done.

If it turns out nothing can be done, then I need to examine how to minimise its impact on my life as I don't intend to fall off my perch for another couple of decades, so need to biff it!

thank you again, I will be doing lots of reading this week!

Best wishes

Holly

[AussieHeart]

I hear your frustration. Hang in there until you see the ENT. It’s so sad this condition exists! In early 2020 I presented to the GP with sudden onset hypercussis. I was “accused” of having anxiety as I was distressed by the symptoms. I was sent to an audiologist who talked to me like I was stupid telling me not to focus on the sound! I did have some hearing loss identified but never sent to an ENT to rule out cause because it was also discovered I had an arrhythmia. Sadly my hypercussis morphed into pulsatile tinnitus. I suffer badly just after listening to radio or TV and often go to bed with my head feeling squeezed. High impact cardio class aggravates it, loud suped up cars trigger it, even washing my hair can aggravate it. I have tinnitus 24/7 and pulsatile weekly and can go through stints of hypercussis that thankfully isn’t as bad as that first episode. I’ve read viral infection can be a cause. I wonder like heart issues emerging due to Covid is it also behind tinnitus (makes sense given it’s a virus). BTW I’ve never been diagnosed with Covid but suspect had it in the early days. That said my mother has SVT heart condition which came on after she had mumps in the 1960s and she has tinnitus. All food for thought and shows how difficult it it to know why and what causes it.

[hollyrain in reply to AussieHeart]

Thank you for your reply AussieHeart

I am sorry you are having such a hard time. Yes - loud cars, helicopters, dog barking, trains - all daily noises which really go through my ears and head like a pneumatic drill. I'm sorry you also had a rough time with GP and audiology...non judgmental is what I keep reading medical staff are, but I find it often isn't the case.

I hope you get some relief - have you thought of going back to your GP for an ENT referral? I don't know about potential virus impact

Wishing you well

Holly x