Why do I have pain?: I've had T for over... - Tinnitus UK

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Why do I have pain?

WTBmrBlonde profile image
11 Replies

I've had T for over 2 months now and it was originally diagnosed as just ear wax. Had that microsuctioned and no difference. I've been to the GP multiple times and even gone to A&E, I've had an ENT appt rushed through at the hospital but it was just the same tests as at the GP's, no MRI, no Xray, just looking in the ear and checking movement of neck and eyes. I feel like no-one in the health industry really cares about the situation!

My problem is that I don't just have T, I have ear ache aswell, surely for 2 months this is not normal?! I'm concerned that there is something inside causing pain and it's just getting worse the longer time goes on.

Like everyone with T I'm so depressed, I feel like I have nowhere to go and no-one cares. Should I be suffering with pain like this??

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WTBmrBlonde profile image
WTBmrBlonde
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11 Replies
WTBmrBlonde profile image
WTBmrBlonde

I guess no-one knows then :(

Angela-H profile image
Angela-H

Hi WT, it has never been explained to me by the medical professionals why pain and tinnitus happen at the same time. I suppose the tinnitus activity in the brain causes the pain ......... so many questions about tinnitus to which it appears there are no answers.

I could not believe the pain that was happening in my head when I first got T, the like of which I had never had before, but thank goodness it gradually became less over the first few months.

Now that I have habituated to my tinnitus (almost 3 years on) I just get the occasional type of headaches.

It would be good if any of the BTA experts could explain why tinnitus and head/ear pain happen at the same time. I would not bother with ENTs as, frankly, none of them care about those suffering with T.

Angela xx

WTBmrBlonde profile image
WTBmrBlonde in reply to Angela-H

Thank you for the reply :) Who else can I turn to for help if ENT can't/won't help me?

sammie888 profile image
sammie888

Hi WT go back to your GP and tell them you require a MRI scan I thought that any GP worth there salt would have referred you for a scan after suffering the dreaded "T" and physical pain.

All the best Sammie

Angela-H profile image
Angela-H

Hi WT, when it happened to me I went to the GP obviously! I was referred to ENT (I paid privately as there was 6 month wait) and he was brief and curt - no cure you will have to live with it. He didn't say why I had the intense head pain. £170 for 15 minutes of advice, but the one good thing he did was to refer me to the hospital audiologist. A week later I saw her and that was the beginning of the treatment that worked. I had a hearing test and was found to have slight high frequency loss in one ear. For that I was given a hearing aid, which she said would help with quietening the raging tinnitus. I was then given a white noise masker for the other, good ear. I was in such a desperate, yes suicidal state of mind, that she was caring enough to see me every week, then lessening to every two weeks, then monthly. After about 6 months my T began to quieten and habituation began to happen.

My GP prescribed Zopiclone to help with sleep, Mirtazapine anti anxiety tablets to calm my brain and after about 12 months I was gradually weaned off these. Time is what brings habituation and relief. I wake up with tinnitus most mornings, but after putting in my hearing aid (no longer need the white noise masker) and getting on with my normal life, the tinnitus fades into the background. And, I never would have believed it, but when it does surface during the day it doesn't bother me.

I had an MRI scan but fortunately nothing was amiss. If you want reassurance, I would return to your GP and ask for a scan. From my experience, GPs know very little about tinnitus, so I would recommend that you ask your GP for a referral to your hospital audiologist.

The BTA website is up to date with the latest news - if you join up you will receive a quarterly magazine "Quiet" which gives all the information you need and also real life stories of how folk learn to live with this condition. I hate having it - caused by the anaesthetic during a major op - but I have learned to live alongside it.

Love and best wishes,

Angela xx

starshine53 profile image
starshine53

Most likely your pain is down to " pressure inside the ear. I too had a similar experience to yours but initially my doctor reassured me it was classic early stage Tinnitus. However, should other symptoms appear like dizziness,nose or throat problems them he would send me for a scan.

I know how you feel which is ignored and abandonedy by our medical establishment but they are only going by set medical rules: more than two symptoms means they are obliged to have you investigated further.

In time your Ear pain will go or be less frequent. Furthermore your Tinnitus could disappear forever overnight or more likely become so faint you struggle to hear it anymore, this happens to the vsst majority of the 9 million sufferers in the UK. For now try and calm down and know you are not alone.

Keep on the Web-site as you will find a whole world of helpful information on Tinnitus management to your advantage.

Best wishes WT

WTBmrBlonde profile image
WTBmrBlonde

Thanks for reply guys, I've tried time and time again to get the GP to send me for an MRI but he flat out refuses and told me that he isn't allowed to do it anymore even though the hospital and everyone else agrees that he can. It's so frustrating! I paid for a private consultation aswell and a hearing test £280 for 30 mins. He told me I had some hearing loss in that ear and I should have an MRI but I would have to pay for that privately as he couldn't refer me to the NHS as it was a private appt, that was another £500-900 and would then require another £200 appt after to discuss the results, and then further costs if I needed anything doing. My budget broke long before this point!!

I went to A&E in desperation but they said they couldn't do anything either and I would have to wait for the ENT appt, that was rushed through but as I said nothing was done further than a GP appt. I've got a follow up for 15/12 but I don't know if I can wait that long without being fully suicidal, I can't sleep I can't operate during the day, I feel lost completely :(

I know lots of others are in the same boat as me but I just feel fully let down by the NHS, they don't seem to care or realise how much this affliction affects people because you're not walking into A&E with blood pouring out of you!

I guess all I can do is try to get to the 15th with a shred of sanity left and see if they will give me an MRI. The most frustrating thing is that my sister works in the radiology dept and she said if I had a referral from my GP she could scan me in 5 mins!!! :( :( :(

WTBmrBlonde profile image
WTBmrBlonde

Also my GP won't prescribe me anything to help me sleep or for anxiety etc !

Angela-H profile image
Angela-H

Would suggest you change your GP. My GP had no sympathy and shouted at me very loudly. I changed to another practice which, although lacking in knowledge about tinnitus (I gained all the information I needed from the BTA) had more caring GPs.

You say that you have hearing loss - hearing aids are believed to quieten tinnitus and it certainly has quietened mine. I know this for a fact as when I take it out, the tinnitus gradually gets more loud, reducing again when I put on the hearing aid again. It is most unfortunate that we have to push against so many barriers to be treated in a respectful and proper manner and get the treatment we desperately need. As you have had tinnitus for such a short time, hopefully it will quieten and perhaps disappear, as it can for some folk without any treatment. Stress of any sort is what heightens my awareness of my T.

Angela xx

sammie888 profile image
sammie888

HI WT I think its time to consider changing your GP or at least reporting this uncaring fool.

why this fool wont refer you is beyond me probably some budget issue.

NicBTA profile image
NicBTAPartner

Hello and a (belated) welcome to the British Tinnitus Association forum. - I've been away on leave.

Do feel free to ask any questions, I hope that you find this a helpful and supportive place to help you manage your tinnitus.

Reading this thread, it does seem that your GP is not perhaps the best informed about tinnitus - we do have something you can share with your GP which may help - you can find it here: tinnitus.org.uk/guidance-fo...

We have some resources that you might like to check out in addition to our home here:

tinnitus.org.uk

takeontinnitus.co.uk

Helpline 0800 018 0527 (Monday-Friday 9am-5pm) (outside the UK you can call +44 (0)114 250 9933)

Warmest wishes

Nic (BTA Communications Manager and Forum Administrator)

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