The nightmare that is living with tinnitus

Pic courtesy of theconversation.com

 I don't think I've spoken about TINNITUS before, but realised I should after a brief chat with a friend who also suffers this morning. I've not seen him since before lockdown. Like me, he is a musician and like me he suffers from tinnitus. Last time I spoke, he was at his wits end. He confessed that he was verging on feeling suicidal as he couldn't sleep, couldn't concentrate and couldn't think. 

When he told me this I was horrified. I had another friend who had a nervous breakdown due to tinnitus. They only got any help when they told their GP that it was making them feel suicidal. The more I've talked with friends about the subject, the more common I've realised how common these feelings are. 

One thing that is good is that when friends have told their GP, they have been fast tracked and got some specialist help. For most people, there is not a cure, although often it is a symptom of other medical conditions that need treatment, such as high blood pressure. If you have tinnitus, I'd advise a check up.

So what is it like? For me I have a high pitched cyclical whining, that is especially pronounced in my left ear (I had an operation on that ear in 1988, which started it all). I also have some residual tinnitus in my right ear. Using equipment we have at the studio, I'd estimate that it adds about 70 decibels of noise. It is pretty constant, although I mostly notice it at night or on dog walks in the countryside. I live by the M1 motorway and I actually find the background noise helps me sleep and relax. 

During lockdown, when there was almost no traffic, I found it almost impossible to relax. I also find that when I'm on holiday in quiet places it can be really irritating. However, there is one thing that does mitigate it. That is drinking alcohol. For health reasons, I don't drink 3-4 days a week. If I have a moderate amount , say 2-4 pints/glasses of wine, I sleep far better. This presents a dilemma. If I am tired, then generally I can nod off, so after football etc, I generally sleep well. If I'm not tired and haven't had a drink, it can be very hard. 

There are things that can be done to help. The NHS website says 

Do

• try to relax – deep breathing or yoga may help

• try to find ways to improve your sleep, such as sticking to a bedtime routine or cutting down on caffeine

• try to avoid things that can make tinnitus worse, such as stress or loud background noises

• try self-help books or self-help techniques to help you cope better from the British Tinnitus Association (BTA)

• join a support group – talking to other people with tinnitus may help you cope

Don’t

• do not have total silence – listening to soft music or sounds (called sound therapy) may distract you from the tinnitus

• do not focus on it, as this can make it worse – hobbies and activities may take your mind off it

I have to confess, I don't think the NHS advice is entirely helpful in that it dismisses something that can make people feel suicidal and doesn't properly signpost this risk. There is better advise on the British Tinnitus Association website. 

If tinnitus is a problem for you, I'd suggest that it is worth keeping a tinnitus diary and noting what works and what doesn't. Some of the advice, such as playing soft music is all very well, but if you have a partner you share a room with, this is not always practical, unless you can sleep with headphones in (I can't, they irritate me and I'm not overly keen on soft, ambient music) . There are apps that help some people.

For me, the most effective strategies involve distraction. I find that if I read before bed and get engrossed, I'll often get tired and nod off. I also memories songs and play them in my head. There are times when none of this works. I discussed this with my former GP Dr Carswell in the early 1990's. His advice was to have get up and have a tot of scotch whisky. If it is really bad, this works, but I very rarely do this. 

Another thing I have is a series of visualisation exercises that I use. I find that visualising sounds is particularly effective. I combine these with relaxation and breathing exercises. I found that some relaxation exercises are counter productive, especially ones where you lie silently and 'empty your mind', that is a part of many Yoga classes. To me, I find it sounds like I am at Niagra Falls and it ruins the mood. A friend suggested I visited  Niagra Falls and used this as visualisation, which I did, but found it just made me aware of the Tinnitus. 

There are devices that produce white noise that is also meant to help, although I personally find it slightly irritating. The worst times are when I wake up at 4am, with a really loud ringing in my ears and my mind racing. This is the time when it is worst. When you don't want to get up, you can't sleep and you are tired but not tired enough. Often, my thoughts are so chaotic that I can't concentrate enough to get myself into a place where I can deal with it. I discussed this once with a former Yoga teacher. He asked why I was always so 'fidgety in the relaxation'. I explained. The next time, he brought some low ambient music for the relaxation and that helped. He also gave me a couple of exercises and suggested that I try them at home when it was bugging me. The most effective is one where you regulate your breathing, then shift your consciousness to other parts of your body, starting with your toes. You slowly move your toes, and then feel how your toes are feeling. You then move to the soles of your feet, gradually moving up the body, spending around 30 seconds in each part. This will work around 50% of the time. 

To sum up, if you suffer from tinnitus regularly and have not sought medical advice, I'd strongly advise that you do. If you have and it hasn't resolved anything, start trying to devise strategies that help. Don't expect them to work all of the time, but even if they improve things 25% of the time that is better, and I guarantee that if you keep refining what you do, it will improve over time. If it is causing you to feel depressed or suicidal, then tell your GP and you will be fast tracked to see specialists. Many people think "It's too trivial to raise" but if it is affecting your mental health, then it is very serious indeed. If you are using alcohol to cope, then this may cause harm so also mention this to your GP. Psychoactive drugs can also make the symptoms of tinnitus worse, as you sometimes draw some rather strange conclusions about what the noises is or is doing. Some people find that tinnitus is affected by electro magnetic fields, so it may be worth turning off all the plugs and leaving the mobile phone elsewhere in the house. 

I'd like to see the NHS take the subject far more seriously, although I realise that for them, it is not a priority. I'd be interested to hear of other people's experiences and strategies.