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Excruciating ear pain that won't go away

(15 Posts)
californiadreamer Sun 08-Oct-17 14:13:40

Am at my wit's end. Two months ago, dd developed ear pain. Three visits to the GP later and one referral to A&E and we're none the wiser.

She's had her ear syringed and there's no infection. After the referral by our GP to A&E the ENT dr there noticed she had enlarged (not inflamed) tonsils and suggests that this may be causing Eustachian Tube dysfunction and that she might need to have her tonsils out.

He presribed 30mg codeine to manage the pain while we wait for an appointment at the ENT clinic, as ibuprofen and calpol just don't touch it.

The codeine seemed to work for a couple of days but this past weekend the pain has returned. It comes on very suddenly - and is so painful she cries and screams with the pain - and then it goes away just as suddenly. She can have around 4 to 5 painful episodes an hour.

I called 111 and was referred to the out of hours GP. He took a look at her today and discounted the idea that she needs a tonsillectomy and that she might have TMJ - the jaw disorder.

I've googled both Eustachian Tube Dysfunction and TMJ and her symptoms don't seem like either.

Anyway - she's been prescribed Naproxem now - until the ENT appointment next week but so far that doesn't seem to be working.

How long should an 11 year old be in unbearable pain for before something needs to be done? Just don't know what to do. Has anyone else experienced anything like this?

shewolfmum Sun 08-Oct-17 21:00:18

If open to ot try some pulsatilla. If you don't believe in homeopathy it doesn't matter...worth a try? Can get a 30 from local health food shop or pharmacy...

Sooooooooooooooooooooo Sun 08-Oct-17 21:20:39

Codiene shouldn't be given to anyone under 12. It's a fairly recent recommendation.

Jenala Sun 08-Oct-17 21:56:54

Had she had her ears syringed before? When my mum had excruciating ear pain it was due to trapped water from syringing. I guess water could get trapped other ways. They cleaned her ear with suction after weeks of bad pain that was intermittently horrendous pain.
A friend of mine is a clinical scientist and works a lot in ent and says syringing is bad news these days though loads of doctors still recommend it.

Blueberrysandgrapes76 Sun 08-Oct-17 22:19:27

A random thought but has she seen a dentist recently? Could be pain from the jaw?

Blueberrysandgrapes76 Sun 08-Oct-17 22:20:57

If it’s really that bad go back to a and e btw - you shouldn’t wait a week if she can’t manage with the pain something more needs to be done

Usernom1234567890 Tue 10-Oct-17 17:18:30 your dentist confident this is not a problem tooth?

californiadreamer Tue 10-Oct-17 17:31:20

Not a problem tooth - she's been checked quite recently and I did think maybe that might be it. We went back to A & E - nothing sinister in ENT so she is booked in for an MRI - one dr suggested it might be a compressed nerve!

hp2 Tue 10-Oct-17 17:36:34

I was on long term antibiotics for years as a child with recurrent ear pain presumed to be infection. ENT took one look at me and said it was referred pain from my teeth. Have you tried getting the dentist to check things over?

californiadreamer Tue 10-Oct-17 19:24:15

That's interesting hp2 and usernom - were you in pain all the time or did the pain come and go?

Usernom1234567890 Tue 10-Oct-17 22:10:17

Dental pain tends to come and go, pulpitis initially, then develops into periodontitis.
Did your DD have any radiographs at her last dental check ? Or has she had any in past 12-18 months? Does she have any fillings at all?
It's really common to have ear pain with dental problems.....

californiadreamer Sun 05-Nov-17 09:11:18

Just an update - and need some advice. After three trips to A&E - all referred by our GP.... the consultant has ruled out tonsilitis, mastoiditis, sinuses etc etc. We did go back to our dentist and dd had x-rays and a complete check-up but the dentist couldn't see anything that could be contributing to the pain. She thinks TMJ is highly unlikely as well.

DD had an MRI last week and we are just waiting for the results. Doing a google search I read about something called Geniculate Neuralgia - which is where a blood vessel presses on a nerve in the skull. The symptoms match what dd is going through - - like an ice pick suddenly being pierced through your ear - though I know I'm not a doctor!!

Before her MRI, the consultant said if the MRI doesn't show anything he'd refer us to a neurologist.

The problem is - her appointment with the ENT consultant just to discuss the MRI is at the end of November. If they then refer us to a neurologist - that's another month or so wait just for that appointment.

She is in crippling pain - it comes on suddenly and she cries and screams in pain. She has around 10 to 15 attacks a day. Pain relievers don't work - even stronger ones given us by the GP (and I've read that this is the case with Geniculate Neuralgia).

I don't think the drs realise how much pain she is in - it's not just a simple ear ache that goes away with Calpol. DD is really stressed as are we all..

I do find it quite unreasonable that the NHS would let an 11 year old be in so much pain for so long....(3 months and counting) but maybe I am the one being unreasonable?

i've tried to video her when she's having an attack just to show evidence of what it's like - but it comes on so suddenly and randomly, haven't succeeded so far.

I'm going to call this week to see if I can have a chat with the ENT consultant on the phone - because if she is just simply going to refer us to a neurologist I don't want to wait a whole month just to be told that!

Any other ideas on how to handle this?

Nearly at wit's end ... but hanging in there.

BarbarianMum Sun 05-Nov-17 18:49:44

Email/phone/ contact the ENT consultant as youve suggested to try and speed things along. Its not nice to see your child in pain but they are investigating and quite often rarer conditions are diagnosed by a process of elimination. It doesn't look like the possible condition is in and of itself dangerous so it isn't a number 1 priority. And yes, sorry, children and adults do live with severe pain for weeks and months with nothing being done - often because their is nothing to be done.

cestlavielife Sun 05-Nov-17 22:16:00

Try and find out when mri results will be available.
If mri clear but consultant happy to refer to neurologist keep email calling to hurry the referral. Tell them you can take a cancellation.
You could see a paed neurologist privately but you would want scan results first.
What happens at school when she gets these attacks ?

californiadreamer Wed 22-Nov-17 10:20:12

Hi - thanks Cestlavie and BarbarianMum

well after 2 weeks of chasing/being a real nuisance - I've managed to get her MRI results and get her seen by a paediatric consultant.

The general view is she has geniculate neuralgia - which belongs to the family of neuralgias often referred to as "the world's worst pain". She has to see a paediatric neurologist which will take some months so we are considering the private route just for the initial consultation.

She's been given gabapentin for the pain - when you look at the list of side effects it's really very worrying and I was feeling very low about it all yesterday. I'm on a patient forum for this condition and am receiving some good advice which is great.

She will probably need to be on more specific anti-convulsants - but I have read case studies where children can eventually be weaned off and through things like self-hypnosis and biofeedback can become pain free.

She is having 40 to 50 episodes of pain a day (the dr almost dropped his pen when I told him that yesterday). She now also has stomach pain which I think is down to the stress of trying to cope with it all.

I am not handling it very well and need to find a way to reduce my stress levels. This isn't fatal (though it's been called the suicide disease because there are cases of people who just end it because they can't deal with the pain)... and being in the children's unit yesterday we saw lots of poorly children, many of whom are so much worse off than us,

Thanks for your help and advice.

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