Tinnitus

[Guest]

Looking for some advice. I've been diagnosed with tinnitus. Having had ringing and hissing in my ears constantly for as long as I can remember I finally went to the doctors after it's got progressively worse the older I've got. It's got so bad I struggle to concentrate in school, struggle to fall asleep and constantly miss things people are saying. Considering the last point the doctor thinks it may be caused by hearing loss so referred me as an emergency to the audiologist. That was almost five months ago and still no appointment. What I was wondering was if anyone had tinnitus or knows someone who has, had any advice or anything I can try that may make the sounds less prominent so I can try and concentrate more on school and dance. Thanks in advance☺️

[sarahw]

Hi Ana

 

How frustrating for you.

 

The first thing you need to do is chase up that appointment. There are lots of potential causes of tinnitus so you need to crack on with the tests to decide best treatment.

 

The referral may simply be lost. If not and there's a very long wait I would emphasise the urgency in view of your upcoming A levels - that may expedite things. And if you have any way of your family affording a consultation you could ask for a private referral to ENT.

 

Good luck! The NHS is often difficult to navigate and I'm afraid you need to be pushy.....

[2dancersmum]

I agree with sarahw in that you need to chase up that appointment.  Contact your doctor and see if you can find out what is happening - it should not take that long for the referral to come through even if there is sometimes a wait for an appointment and you state you were referred as an emergency referral.  I've never actually been referred for audiologist but with referrals I have had for various other departments and hospitals I have usually been contacted by the hospital or NHS area trust within a few weeks - even if the appointment itself has then been several months down the line.  Good luck - it must be awful and I hope they can help you

[Guest]

Thank you both, will ring tomorrow and try and chase appointment. It's just so frustrating not being able to do anything about it. And because it's so unseen teachers and other people don't actually believe me and think I'm lying!

[hfbrew]

Chase it up. It really shouldnt take that long. I should know as Ive had to see audiologists all my life and my last "emergency"appointment ( when Id lost my aid) took just 2 weeks.

 

I am so sorry about your tinnitus, a truly difficult position for you. While you are waiting for the appointment it would be worth doing some research online about how to manage the condition.

 

Also get your mum to alert the school in writing. You are so right, being an unseen condition makes it difficult to get understanding doesnt it? Good luck.

[Guest]

Thank you, rung up the surgey and they said I have to book an appointment with the doctor bu he's booked up for two weeks! Got to ring every morning to see if there's a cancelation! Everything about the doctors is such a faff haha!x

[sarahw]

Ana

That is just not on. I work in the NHS and we are all busy but that is crazy.

 

The best thing to get things shifting would be to phone the surgery and say you want to complain and speak to the practice manager.

 

You do not need to see your GP for them to chase up the appointment.

 

Maybe a parent could help you?

 

I do sometimes struggle with getting appropriate management of a situation by receptionists. I think because they are under such pressure they forget to apply commonsense sometines....

[Jan McNulty]

We used to have appalling service from our doctors' receptionists.  My Mum, who had other relevant medical conditions, was once refused an appointment because the receptionist asked her what was wrong she said diarrhea and was told that doctors don't see people with diarrhea!!  She went to the chemist and was given some medication but was told that if it had not cleared within 3 days she should seek immediate medical advice.  It did not clear and she rang up for an appointment only to be told there was nothing for 2 weeks.  When she insisted she was given a telephone consultation with one of the doctors who said there was a known bug going the rounds that required antibiotics.  Mum asked me to go and get the prescription, which I did.  When I was asked for the name on the prescription and responded it was thrown at me!!  I guess the receptionist had been told off.

 

Since then things have greatly improved.  I don't usually have a problem if I need an appointment and the receptionist never asks me what is wrong.

 

Ana you should insist that you have been waiting so long your need to see a doctor has become urgent.  I do hope you get your appointment soon and get the help you need for your tinnitus.

[Guest]

My mums going to ring first thing on Monday to try and sort something. I really just want some answers before my exams start!

[Lisa O`Brien]

Hello ana. Hope you were sorted with an appointment. I have suffered with Tinnitus for the last 2 years or so. I practically fall over when I stand up sometimes; it`s just horrible. Do let us know how you get on.

[alison]

Janet, you're lucky to be able to *get* a telephone consultation with the GP.  My surgery has abandoned the practice.  I really can't see the logic behind it: if it's something minor like getting a prescription off them it shouldn't be a big deal.  I probably ought to go and get a blood test done: previously they've just spoken to me and then left a form at reception for me to pick up at my leisure - easier for everyone.  I wonder what they'll do now?

[Guest]

Mum phoned and wa told the same as me. Argh so frustrated! Just want to be able to know what to do about it now. All I want is to be able to hear total silence for even just a minute????

[Melody]

All the best, anaballerina. I hope they manage to do something once you finally get through to them.

 

My mother-in-law's doctor's office had the most idiotic appointment system I think I've ever come across. If you wanted an appointment, you had to call between 8.30 and 9 that morning because that was the only time they accepted appointment bookings. And when the appointments were filled, that was it. You couldn't book ahead of time, you couldn't walk into the office and make an appointment, you had to call between 8.30 and 9. So of course you just constantly got an engaged tone and had to call back and call back and call back, getting engaged tones the whole time, because everyone wanting an appointment was doing the same thing. If you'd sat on the phone for the solid half hour and not managed to speak to someone, but finally got through at 9.03 or something, you were told to call back between 8.30 and 9 the next day. One time my mother-in-law went through this charade for two solid weeks before finally losing her cool and yelling at the receptionist. She was then grudgingly offered an appointment with the duty nurse. It's completely nuts.

Edited March 10, 2015 by Melody

[2dancersmum]

Ana - I think you and your Mum really do need to get pushy as this is an administration issue for why you have not yet heard about your emergency referral from 5 months ago.  You need to insist on speaking to the practice manager.  Getting an appointment to see the doctor is just repeating your visit of 5 months ago - you need to know if your referral is lost in the system.

 

 

Its odd how all doctor's surgeries are so different.  We have only a few pre-bookable appointments - bookable only on the Monday morning for the following week.  Otherwise you phone up or go in.  They open from 8am and it is a pain trying to phone at that time of morning and getting a constant engaged tone but you do get a same day appointment - they only offer same day appointments for the most part - the earlier you ring the more chance you have of picking your time and doctor. They will fit you in somewhere if need be.   Ours also offer limited phone appointments so no complaints but the less said about one of the receptionists and her attitude the better!

[Anna C]

Yes, that simply isn't good enough Ana. You don't need to see the GP to be able to chase your referral, that's ridiculous. I agree with you or your Mum insisting on speaking to the Practice Manager to find out if the referral was sent off, when it was sent, and to whom, so you have a contact at the audiologist end as well.

 

Fortunately our GP and Receptionists are excellent, but even so, they "forgot" to do an urgent referral - I only found out when I phoned the hospital to see when my appointment might be. A phone call to the Practice Manager sorted everything out.

 

If I were you I would get back onto the surgery today, if possible, and ask to speak to the Practice Manager as soon as possible.

[hfbrew]

Do you know which hospital/ clinic you should have been referred to?

It might be worth contacting them directly.They should be able to tell you whether your referral has come.

Ive hardly ever gone through my doctor to get an appointment with the audiologists at our NHS hospital.

[Vonrothbart]

I have suffered from Tinitus for many years annaballerina, and have learnt to put up with the usual hissing, blowing steam sounds. Three years ago I started getting what's called pulsatile tinitus, which is like a Chinese torture. (Whatever that is) The specialist told me it's caused by the eustacean tube picking some sort of signal up and sending it to the ear, which results in a horrible throbbing. In my case it was probably caused by a severe head injury I had when I was younger, which included multiple fractures of the skull, and a severed facial nerve, which is very close to the ear system. It could also have been caused by noise damage, in the industry I worked in. I certainly know what you mean when you say you can't concentrate, and when in my case, this throbbing stops, it's the most wonderful feeling there is. There are some self help groups around that may help, but I'm pretty certain there are no medical cures for the problem. I was given  three options by the specialist, 1 = use a nasal spray for the rest of my life. 2 = have a small plug fitted ( another specialist I saw disagreed with that one ) or 3 = do nothing and put up with it. I do find that if I wear the hearing aids they gave me, it relieves it slightly, but don't bother to be honest as I have issues with them. You might try logging when the problem is at it's worst, and maybe you will come up with a pattern. I find mine is worse when the pollen count starts climbing, hence the spray. I also think it's quite normal for almost everyone to have some of the symptoms, but as you will know it can be a horrible complaint at times.

[LinMM]

Yes I too suffer from tinnitus.

It started in my late thirties and got progressively worse for about 20 years but now seems to have stayed about the same.

 

Because I also get blocked ears.......I have a VERY small passage way apparently ......it can get worse when any wax is building up.....so have to sort this out as Ive had my ears syringed many times but they don't like doing it these days and it takes AGES to clear via wax softening/dissolving etc.

 

Ive been told that in my case it was either swimming a lot (more when I was younger) or having my ears syringed which has caused the problem.

I don't get hissing but a constant ringing and whining sound.

Apparently there are tapes you can get which play certain frequencies into the ear which can relieve the sounds a bit but to be honest Ive sort of got used to it over the years and it most bothers me know at night if I can't sleep for some reason.......or like now if I concentrate on my ears writing about tinnitus.

 

If I thought there was an actual cure I would be interested but Ive been told there isn't at the moment.

I'm very worried about going deaf( I do have age related hearing lost in the left ear in particular but not enough to interfere with everyday living) as I imagine if I ever had to wear a hearing aid it would just amplify this background noise which would be awful.

 

As you are so young you definitely must get it investigated as you never know in your case there could be something they could do about it.

[LinMM]

By the way Vonrothbart was fascinated to read your post in which you said there can be a problem with the Eustacean tube and this sending signals to the brain.

I feel that's what mine sounds like some weird radio signals .......you know how annoying it is when tuning a radio and you get these horrible ringing and whining out of tune sounds ......I can identify with this!

[sarahw]

Ana

You need to make a WRITTEN complaint to the practice manager about how your query has been dealt with. This usually prompts attention. I'm sorry you are having such a nightmare.

[Vonrothbart]

I also did a lot of swimming to county level in my younger days, I suppose that wouldn't have helped. LinnMM, wearing a hearing aid or aids can actually reduce the problem, seems odd I know.

[Guest]

Just a quick update. After over six months(I actually went on the waiting list in November not January as I thought) and many angry phone calls I have finally got an appointment tomorrow morning with the consultant!! Went back to gp and he rung the hospital only to find out they had put me on the normal waiting list and not the emergency one that he had asked for! And what a surprise the next day I had an appointment lette through. Will update when I know more tomorrow:)

[hfbrew]

Good luck. Hope that you have a comprehensive list of questions with you.

[Jan McNulty]

Good luck!

[JulieW]

Phew! Hope they can get to the bottom of it, you're very young to have to put up with tinnitus.

 

Linmm - as vonrothbart said, hearing aids can help I believe, as they amplify the normal sounds which helps to block out the internal "noise" (the tinnitus).

[Lisa O`Brien]

The best of luck with your appointment. Do let us know how you get on [as long as you don`t mind sharing your news of course.]

[Guest]

Turn out I have slight hearing loss in my left ear but apparently not enough for them to intervene. He referred me to a sound therepist and has checked for any vitamin deficiencies. Finally getting somewhere

[Lisa O`Brien]

Goodness me. Hope the slight hearing loss is only temporary and they are able to sort you out.x

[Vonrothbart]

Yes anaballerina at least you have the ball rolling, lets hope they can come up with something to relieve it. I've had a really good spell, around 4 months with only mild tinitus, but the pulsatile is starting to kick in, hence what I suspected with the pollen season about to get worse. I just tell myself there are a lot of people who would swap with me, so I just try to get on with it as best as I can. Good luck.

[Guest]

Sorry but I just need somewhere to vent. Two weeks ago I gave in a letter from my doctor to go to the exam board and to request that I am allowed to do my exams in a room on my own where my white noise that helps me to not concentrate on the tinnitus can be played all the way through my exams. Having heard nothing from the exams officer o tried to seek her out today(seen as my exams start Monday) and was told that she's too busy to speak to me now. I left a message and asked her to find me as I had a lesson. She sent a message back up to say that putting me in a room on my own and having my white noise(which the doctor prescribed) playing is apparently against the rules! She said I'll have to do my exams just like everybody else and learn to cope! So annoyed x

[Jan McNulty]

That seems very unreasonable.  It probably puts more onus on the school as they will have to have another adjudicator to supervise but surely that is not too much trouble.

 

Can your parents intercede?

[Guest]

My exam is at 9 o clock on Monday morning then the other two are Wednesday and Thursday, so I don't think there is much that can be done. She also said that because it cannot be proved how severe it is then that's another reason that nothing can be done. I feel as if they think I am making it up. I wish I was xx

[Jan McNulty]

I don't really approve of parents raising Cain but I have to say in this instance that is exactly what I would be doing!  Even if it proves too late for Monday please get them to insist about the later exams.