Poor NHS support.

[dave-]

Hello I’m Dave and after an HGV suspension air bag exploded next to me I now suffer from tinnitus and it has wrecked my life. I carried on working after the accident until desperate, I asked my doctor for sleeping pills as I was not sleeping due to the awful noises in my head. He said if he prescribed sleeping pills I would have to give up my HGV licence, I couldn’t do this as it is actually my living so he signed me off sick while they tried to fix my insomnia, I waited three months for an ear specialist appointment who syringed my ears and booked me in to hearing therapy to learn to control the T. I waited 10 weeks for the appointment where I learned not to look at the clock when lying awake all night and keep a radio on to mask the T (wow!) to be fair I did learn some techniques that helped slightly but the insomnia persists, I was told to come back in another 3 months for more therapy wisdom and when I did I was told that's your lot, lack of funding, practice the techniques and close the door on your way out. So I went back to the doctor who said there is no cure for T, your 58 and been off sick for 10 months, we can’t keep handing out sick notes you know and if you don’t get back to work soon you never will, angry and short of sleep I said then fix my insomnia!, the answer I got was go back to your employer and get them to give you a different job, I told him I already have and it is not possible, he said one more sick note then we want to see progress, I’m surprised he didn't make me stand in the corner as a naughty T sufferer. Is this typical of NHS treatment? I have waited months for each appointment then been told off for being on the sick for months, I can imagine someone with less morals or in financial need just saying to the doctor “yes I’m fine now”, then go out driving an HGV unfit through lack of sleep with the obvious consequences. I am angry at the lack of help and now I face giving up my job due to an accident that was not my fault and who is going to give me a job when I can’t sleep?.

[Hidden]

HI Dave,

I am sorry to hear that you are going through a difficult time at the moment with tinnitus and hope it improves for you soon.

Believe it or not. Treatment for tinnitus under the NHS is a lot better than other countries. I know this because I visit other tinnitus forums where people attend from all over the world. Some get no help at all because it's not available. Those that pay for their healthcare insurance tinnitus treatment is not covered. They may get a hearing test, MRI scan, blood tests and that's it.

In the UK. Hearing aids, white noise generators and treatments such as CBT and TRT where available are free of cost. Often in other countries these treatments and devices have to be paid for privately at considerable cost and many can't afford it.

The NHS isn't perfect and it has it's problems. Some parts of the country are better served than others for some services. However, I would choose to be under the care of the NHS any day for my tinnitus or any other medical treatment than choose to go private. Just my opinion.

My GP told me many years ago when I enquired about going private for help with my tinnitus. He told me: I would get the best help and long term aftercare under the NHS. I have found this to be true. I have been an outpatient for 22 years and have had very good treatment for my tinnitus.

As I said, the NHS has it's problems and some parts of the country are better served than others. The truth of the matter for treating tinnitus is this. When there is no underlying medical condition causing the tinnitus. For example conditions like: Meniere's disease, otosclerosis, TMJ, (Temporomandibular joint dysfunction) ETD Eustachian Tube Dysfunction, to name a few. The patient is usually referred to a Hearing Therapist for treatment and management of the tinnitus.

Hearing loss can cause tinnitus and therefore a Hearing aid/s is prescribed to help with the tinnitus. Counselling, CBT, TRT where available are provided to help a patient cope with the tinnitus. Sound therapy can also be helpful. Using a sound machine or white noise generators. In some cases medication can help with tinnitus management. These come in the form of: Antidepressant and in some cases stronger meds such as clonazepam.

The reason why appointments at ENT can take long for the first time is for a good reason. The ear is a very delicate and sophisticated organ. The best treatment in the early stages of straight forward tinnitus without additions symptoms as: Deafness, balance problems, dizziness or pain in the ears. Is to do absolutely nothing. Therefore, it is not unusual to wait for up to 4 months preferably 6 months to be first seen at ENT. Too early an intervention can make matters worse. Many people learn to habituate to tinnitus within the first 6 to 18 months of onset. If a person is finding it difficult to cope, they should keep talking to their doctor who will probably prescribe something to help with stress and anxiety.

Please don't give up. I suggest going back to your doctor if you're finding things difficult and it may be suggested for you to try tinnitus counselling with a therapist, which can be helpful.

I have written an article on tinnitus which covers treatments and coping methods that you might find helpful. If you would like a copy please send me your email address by private message.

All the best

Michael

[dave- in reply to Hidden]

Hello Michael,

I received your article, I will print it off and settle down with a cuppa and read it.

Thanks again Michael, I have had more help and advice from one post than I have had in 10 months of suffering alone, I should have joined earlier.

Best regards,

Dave.

[Hidden in reply to dave-]

I hope you find the Article helpful Dave. If I may say so, it's had good reviews on Tinnitus Talk. The people over there are not backwards in coming forwards when they don't like something.

All the best

Michael

[Jimmuck]

Hi Dave,

You're having a pretty rough time of it and not getting a decent night's sleep makes your situation a whole lot worse. As Michael said in his reply to your post, the NHS is the best option despite the fact that everything they do seems to take ages, so hang in there. When my tinnitus first started, I was struggling with it and was prescribed Amitriptyline which helps calm the central nervous system down. I take one tablet before bedtime and I usually get a full eight hours sleep. As far as side effects go, I can't say I have had any, although it takes a little longer to come to in the mornings, but I feel fine for the rest of the day and I also drive every day with no issues. I don't know what the current legislation is regarding HGV drivers and the use of antidepressants such as Amitrip so you could maybe check it out and perhaps get a second opinion from another GP, as yours doesn't appear to very sympathetic or understand your predicament. I hope you manage to get something sorted out soon.

[dave- in reply to Jimmuck]

Hello Jimmuck, Its good to know there are medication options, I have noted the different drugs down, there are quite a few that seem to work for T sufferers, there are restrictions on drugs for HGV drivers and rightly so but as I replied to Kenny I can surly try them short term as long as I don't drive an HGV, its great to find out there are sufferers out there that despite their own battles with T can take the time to help and advise others.

Thanks for your help,

Dave.

[ade-the-pade]

Hello Dave

I am really sorry to hear your story. Life can just be very unfair. T is a horrible condition and there is nothing worse than someone telling you just to "live with it". I have seen some great people in the NHS and others that I could gladly punch.

I was a breaking point and an audiologist gave me a leaflet and sent me on my way.

Lacking sleep is a killer. I went several days and was ready for the nuthouse. Work was nearly impossible. My GP was fine with the sleeping pills. He gave me zopoclone that would knock me out for four hours. I had these for about four months. Bliss. I now use mirtazipine 7mg which are good.

There is no cure but my GP and ENT were happy to try out all types of medication to find something that makes life liveable.

I have hyperacusis in one ear and T in the other so know where you are coming from.

On a positive note, this is the worse time. It is not easy but things do get better bit by bit. Push your GP and be a nuisance. Try everything on offer. You may strike lucky and find something that makes thing easier. If it doesn't work then try the next thing.

I am two years into my journey and live with it. I kept my job and can enjoy things, Yes, there are days when I could sit and weep but all in all Life is a lot better.

We know what you are going through and we share your difficulties. Hang in there and keep pushing your GP.

Wishing you peace and quiet and a good night's sleep.

Ade

[dave- in reply to ade-the-pade]

Thanks for the reply Ade,

I also was told by the therapist that I have Hyperacusis when I described a crowd in the pub watching football suddenly cheering loudly, the noise sent me through the roof, it actually hurt and brought on immediate anger, I do not know if a hearing therapist is qualified to diagnose Hyperacusis so I will ask the doctor, I'm guessing its the same as T, no cure, she told me not to avoid such situations but I have done. It does sound as if you have a good GP with the right attitude.

Regards,

Dave.

[KC1961]

Hi Dave,

Back when I was new to T and I was lying awake all or almost all night being driven nuts by it, after a few weeks of not being given sleeping tablets by my GP I was given some on a short term basis. He said that taking sleeping tablets long term wasn't good. After this he tried various other medicines until we found something that got me sleeping (Trimipramine, an anti-depressant). As time passed I was able to reduce the amount of tablets I took until I got to the stage where most nights I was getting about 5-6 hours sleep unaided. Using trimipramine did give me a bit of a "hangover" next morning but usually as soon as I went outside I became much more alert. BTW hard to tell by looking at the wee photo, but it looks like a pre unit RE. Anyway, I also have bikes, for months after the appearance of T I couldn't bear to wear a crash helmet so didn't use a bike. Thro' time I got to the stage where I could take a bike out and be mostly unaware of T.

Best wishes

Kenny

[dave- in reply to KC1961]

Hello Kenny,

I am going back to doctor and say as I am not driving could I try sleeping pills short term to get a routine back, 10 months of insomnia is enough!!. Also yes it is a 59 RE Super Meteor and I will ride this summer come what may working on it over the months has kept me sane.

Thanks for the reply,

Dave.

[Jojo313]

Apart from the lorry driver bit I’m in the same boat! It’s disappointing, ENT seemed to have a list with me, firstly Labyrinthitis then Ménière’s then Vestibular migraine, then MdDS, yes I have symptoms of all of them, but they just don’t listen, I even got ‘ are you stressed/anxious because of the menopause ‘!!! As I’m polite I didn’t give them the reply I wanted to! So here I am 17 months later still screeching 24/7 and wobbling and as yo7 say they don’t have the time or resources ( or give a monkeys) I do have a lovely audiologist who gave me some white noise aids and I have to say without them I would have probably jumped off a cliff by now!

[dave-]

Jojo313

Yes I had the same response from the therapist, because your off work its stress and anxiety driving the tinnitus. After spending £40 on a machine I found the white/brown noise annoying so I downloaded the free Oticon app and the campfire works a treat for me, I suppose we all have different distraction noises that work.

Regards,

Dave.

[AnneJ7]

Hello Dave, I'm truly sorry you're going through this bad time..it's hard to think of anything else but you've made a good first step. This is a place where you will find love from a host of people who really care..I know because when I was desperate for some peace and answers 6 months ago, this is where my new journey began.

My T hasn't disappeared..it's just as noisy and disruptive..but I treat it as a badly behaved lodger and refuse to let it dominate my day or night. Stress and anxiety seem to aggrevate it so I use the tinnitus association deep relaxation cd as often as I need to and the app 'relax melodies' from which you can choose from a good number of sounds. I use cavern/camp fire and rain as low as I can which makes me concentrate on listening for the sound rather than the t. I have this on my mplayer with in earphones every night. Just don't try to drown out the t..it will just make it worse. Through the day I have gentle piano or organ music which counteracts and breaks up the never ending screeching high pitch whistle in one ear and high droning noise in the other.

Once you start to try things you are beginning to take back some control and that feels good..

Take care

AnneJ7

[dave- in reply to AnneJ7]

Thanks AnneJ7, your right its so good to read other peoples experiences and after one doctor repeating parrot fashion there is no cure for T its great to find out there might not be a cure but there are ways of coping and reducing the misery. The campfire works for me too.

Keep fighting your noisy lodger ,

Dave.

[Hidden]

Hi Dave,so sorry to read about your experience...I have found my experience with Drs and Audiologist pretty much the same , on my recent visit a month ago I asked the Audiologist had he any idea what it must be like to be hearing sounds inside head all of the time.He just looked at me and repied ' no I haven't and no one has ever asked me that question before'

Has anyone suggested an MRI scan?

Hypnosis could help you with your sleep and also teach you to relax..

Good luck and l hope you get some respite and answers soon.

Carol.

[dave-]

Hi Carol,

Not heard of or had suggested MRI, I will ask my doctor although I imagine a long wait. I am looking into all alternative practices, pre T I would have run a mile before trying alternative medicine but now I'll try anything for a bit of relief and have had reflexology strongly recommended. A manager at work almost laughed when I was telling him how the T was there all the time driving me nuts and he said sarcastically oh I think I could cope with a bit of background noise!, I walked off before I did something violent, ok the environment I work in is very masculine, suck it up, grow a pair, etc but it got me thinking would that have been my attitude to work mate with T before I was inflicted with it?, I certainly wouldn't have been so rude or blasé yet I would not have understood their struggle. There needs to be more info out there on T.

Thanks to you and all my reply's,

Dave.

[NicBTA Partner]

Hello and welcome to the British Tinnitus Association forum. Do feel free to ask any questions, I hope that you find this a helpful and supportive place to help you manage your tinnitus.

This isn't typical of the support offered by the NHS, although some GPs are less switched on about tinnitus than we would like.

Tinnitus does generally get better over time. And even if it doesn’t go away completely, it can get to a level where it isn’t intrusive, and it isn't noticeable - in the same way you probably don’t really notice traffic noise when you walk down the street.

The time tinnitus takes to disappear or reduce in intensity varies from person to person, but there are some tips and techniques you can do to help. These are the things we at the BTA generally recommend:

Information - you will probably feel better when you find out more about the condition, that it is very common and that you are not alone.

Counselling - techniques such as Cognitive Behavioural Therapy (CBT) can be helpful, either as a standalone therapy or combined with sound therapy.

Correcting any hearing loss - if your tinnitus is accompanied by any hearing loss, then trying to correct this loss with hearing aids is often very helpful. Do make sure that these are adjusted correctly, and that they are worn – they do not work if they are kept in a drawer!

Sound therapy - if the noises seem louder at quiet times, particularly during the night, it may help to have some environmental or natural sound from a CD, a sound generator, or even a fan or ticking clock in the background. Some people use in-ear sound generators.

Relaxation - learning to relax is probably one of the most useful things you can do to help yourself. Those who practice relaxation techniques say they reduce the loudness of their tinnitus and helps them become indifferent to it. Yoga and tai chi can also help.

Mindfulness is showing some very promising results after recent clinical trials, so that is something else you might like to try.

I would say that none of these solutions is an "instant" fix - they take time and perseverance. Some people do expect tinnitus to subside after one session of breathing exercises, for example, and that just isn't the case.

There is no drug or medication which directly helps tinnitus, so we do not recommend any.

There’s a lot of good information on our website tinnitus.org.uk - try to avoid sites which promise “tinnitus miracles” or “tinnitus cures” as there’s no such panacea - but with time, you will learn to manage your tinnitus well.

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 [phone])

Warmest wishes

Nic (BTA Communications Manager and Forum Administrator)