Ear pain and hearing loss: Does anyone experience... - LUPUS UK


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Ear pain and hearing loss

Purpletop profile image

Does anyone experience ear pain with tingling/numbness around the area? Mine is on the left side/left ear.

I've had this for some time, on and off but it is starting to concern me. Particularly because I've noticed that my hearing is diminishing in that ear (I noticed I turn my head towards people, which means I don't hear properly in that side).

I haven't yet been to an ENT specialist but I'm preparing my speech to the ever-reluctant-to-refer-to-NHS GP of mine.

If you've experienced this and you've seen someone about it, what was the diagnosis in your case please? I realise that it could be something completely different but just so I can have an idea.

11 Replies

Why not start with a visit to a hearing aid provider? You can have free assessments.

Not entirely sure what your dx is but you can have hearing problems due to vasculitis too.

Sounds like you need a new GP too...

Purpletop profile image
Purpletop in reply to PMRpro

I've been considering changing my GP practice, of course. But then how do we know how the next practice is going to be? It's frustrating that there is no way of checking properly, whether a GP is "good" or not is such a subjective view.

I'm eyeing an alternative GP practice slightly further afield. One of the GPs is on the rheumatology and osteo clinics at the local hospital, so on paper that sounds great. But what if I move only to realise that he is one of those patronising goats that we are all too aware of?

Then there is the issue of availability. My current practice has emergency appointments slots and provided you're scared enough and insist for one, a doctor will see you. What if the new practice doesn't have the same availability and I don't get to see a GP for days/weeks. I will then have to go through the rigmarole of calling 111 and get them to send me to one after hours.

But then what's the point, I hear you say, of having an available GP when you want him/her only for him/her being unable to understand what's happening to you (that look of total incomprehension has become du jour in my case) and moreover, be reluctant to refer you to a specialist on cost grounds and on the reliance that I have medical insurance.

Not an easy decision. Pity we can't have "trial" periods before moving across. Or the ability to interview the GPs.

PMRpro profile image
PMRpro in reply to Purpletop

Isn't there the option to see a different GP in your current practice? You don't HAVE to see the one they have your name against - whatever they say. What about an interview with the practice manager - a doctor who will only refer patients with medical insurance shouldn't be in the NHS. Or is that so his little friends get work?

Purpletop profile image
Purpletop in reply to PMRpro

There are 4 GPs. They are all lovely and try to help and I've seen all of them at various points.

The practice is headed by a young GP who is doing her best to make the practice available to people, improve consultation rooms, etc. It's sited in a lovely old building - there is still the old fashion waiting room without electronic messaging but comfortable in the way an old house is after years of use. She is the one that decides whether to refer someone or not. The others are not partners, just salaried, so they follow her policy. And she is the one who has the purse strings - so medication, referrals, scans, tests etc needs to be somehow approved by her.

Maybe she refers others without an issue but given the burden of lupus, she prefers to rely on my medical insurance. In a way that's not bad - if I want to see someone privately, she accommodates quickly once she consults me, with pretty quick turnaround.

The drawbacks are these: none of the GPs has much experience in lupus, other than one who recently joined and apparently did a 6 months stint in rheumatology. They do try and help, they are very sympathetic, they listen and they try to offer solutions. If they don't know, they say so.

But if I suggest to be referred to an NHS doctor, shutters down, that's it.

I know I have to sit down with the partner and explain to her that the medical insurance won't last forever and soon she'll need to help properly. I don't mind doing that, it's just yet another hassle.

PMRpro profile image
PMRpro in reply to Purpletop

Yes - see the problem. I see their problem too - but that isn't the point is it?

Though - how many GPs DO have experience of lupus? And the fact you have lupus isn't going to go away - so at some point she has to buckle down. Can she not see that referrals NOW may reduce future problems and, therefore, her costs at some later point?

Purpletop profile image
Purpletop in reply to PMRpro

No one thinks long term anymore, everything is "now". The whole mind-set of the English medical establishment is about acute care. If you're dying, they'll take the big guns out and blast everything to smithereens. Not dying, well, what you're wasting my time for?

All this talk about NHS and lack of money - if monies were invested in preventative medicine, we'd be a far healthier nation.

Train those doctors to spot early symtoms and to act on those quickly, look at how the nation's food is produced, at what food is available for consumption, be vigilant about the use of chemicals everywhere in our environment that makes our bodies to mutate uncontrollably, etc, etc. Don't be a plaster, avoid the cut in the first place.

Ok, I'm off my soapbox now.

PMRpro profile image
PMRpro in reply to Purpletop

You're fine - I'll join you on it!

I wonder how much is to do with their belief when they went to medical school that they were going to learn how to work miracles and heal the sick? They are trained from the beginning that they can cure - which may be the case for a few things but most of it is damage limitation and we come under that heading. So they feel they are failing. Then they go into GP land - and become even more disillusioned and get caught up in a downward spiral.

It's a rubbish job these days - caught between their own expectations and those of the patients. But I expect to be taken seriously and included in the management of my chronic illness. And when I know there is something not right to be facilitated in seeing the wo/man who does know about it - not fobbed off.

LUPUSadmin profile image
LUPUSadmin in reply to Purpletop

Hi Purpletop,

You are actually entitled to a second opinion on the NHS if you're unhappy with your doctors opinion so you should be able to get a referral within the NHS. Have you directly asked her to refer you to a NHS rheumatologist?


Purpletop profile image
Purpletop in reply to LUPUSadmin

The previous GP who now retired referred me to a local rheumatologist (NHS) after 2 years of fobbing me off with suggestions of anxiety, stress etc. When I haven't heard from that rheumatologist for 2-3 weeks, I went private.

Since then, each time I need to be referred, the answer is that they don't know enough about the issue and that my rheumatologist is better placed to refer (I.e. Privately). Or, if it is something they consider outside rheumatologist I'm told (depending on the issue) to either go to A&E or to "let it go" because it isn't anything to worry about. The latest thing of which I'm supposed to not worry about being breathing difficulties and angina symptoms which, thank to my private cardiologist, are being investigated fully.

Of course, I want to be able to choose when I want to go privately, mostly because I'm far too worried to sit around for a few months until an appointment is made for me.

But there shouldn't be an automatic assumption that if I've got medical insurance, that's it, i shouldn't use the NHS.

There are so many battles we fight on a daily basis. There is a priority among them. Putting the GP right had been at the bottom of my list so far. I'm waiting for this last bout of illness to go away and then I will sit down properly with the surgery partner and get to a resolution.

LUPUSadmin profile image
LUPUSadmin in reply to Purpletop

I'm sorry that this is the case Purpletop. Have you thought about contacting PALS (Patient Advice and Liason Service)? They deal with complaints about the NHS and help you to get the most out of your care. It's probably worth giving them a ring because they might be able to figure out what the problem is.

You can find some information about them here: nhs.uk/chq/pages/1082.aspx?...

If you enter your post code into this webpage it should give you a number for your local PALS office: nhs.uk/Service-Search/Patie...

Please keep us up to date.


Have a look at the Menieres website.....I have similar and have been told it might be this. It is fairly horrible.

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