Last week I had the pleasure of meeting a beautiful, bright and brave woman who sadly, is going through what I went through. Her ears, eyes and balance are in crisis.
Her experience takes me back to that desperate, time-critical search for information that all the normal channels such as GP’s and hospitals often fail to give.
Times like these you can’t read through 100 blog posts. So here in a nutshell is the key tips and advice to think about if it happens to you. The *stars* highlight the most important instructions.
Please remember I am not a doctor so this is ‘patient to patient’ advice and signposting
If you experience sudden hearing loss (SSHL) and or vertigo dizzy spins (and it’s not getting better by itself):
- In the UK the common practice is for doctors to wait to see if your hearing comes back by itself. They will send you for tests which take time. Yes, the majority of people will simply have blocked tubes, outer ear infections that never lead to any significant or permanent hearing loss. But for some with sudden hearing loss, this time spent awaiting results could mean you are losing vital opportunity to save your hearing.
- What happens elsewhere in the world is that any hearing loss is treated as a medical emergency and the patient is delivered high dose steroids. These are shown in some cases to restore hearing by soothing inflammation in the inner ear. The sooner they are given the higher the probability of success.
- ** If your hearing loss is significant enough for you to be worried, you can demand steroids. Sudden hearing loss is a medical emergency and should be dealt with as such. If he/she doesn’t give them to you, consider going privately. I’m not a fan of medication but it’s better to have taken them when you didn’t need them, than to have not taken them when you did.**
- Normally you will be given high dose steroids orally and if they don’t work you can try having them injected into the ear. The results are mixed but for some people they can really help to lift hearing again. I’ve had three sets and they are sometimes painless and sometimes painful. My neurotologist said its all about the pH of the solution so perhaps you could ask them to check that aspect before they do it.
- ** Demand your doctor refer you to a neuro-otologist not an Ear Nose and Throat (ENT). Neuro-otologists specialise in the inner ear and have proper equipment to test your vestibular function and hearing. If your GP requests an urgent referral you should be seen within a few days. Here are the links to the Dr. Agrup, london UCLH neurootologist department and imperial college london. Once you get to see these consultants they will send you on to all the other people you need to see (below) There are also private neuro-otologists out there but they are usually the same people who work for the NHS, just charging more **
- Dizzy and having trouble balancing or seeing straight? Get referred to Vestibular Rehabilitation Training (VRT) which is a specialised form of physiotherapy to help the body-mind system to rebalance. If you’ve now found the neuro-otologist they will refer you. Otherwise consider going privately because it could take 6 months if you go through a GP or ENT. Do your exercises daily and move as much as you can as this helps the brain to adjust.
- Too dizzy to travel to hospital appointments? Call the hospital, GP, Council and citizens advice bureau. I called them all and they failed to tell me about services which DO exist. There ARE options but often one hand doesn’t know what the other is doing so be sure to call different departments and don’t give up too easily. Alternatively post on Facebook, nextdoor, or consider using Uber. It’s a lot of work to get there when you are unbalanced but worth it to get to the neuro-otologist, especially if they are the ones giving you the steroids and referrals you need.
- Fold up walking sticks are useful.
- Can’t hear enough and are still waiting for a hearing test or hearing aids from the NHS? Go to any high street hearing aid dispenser. They will test your hearing and can provide one month free hearing aid trials. You can return them, or pay to keep them as I did.
- Can’t hear enough to easily converse with others? Invest in a low-cost conversation amplifier like one of these from Action on Hearing Loss. They have a range of products that can be used with and without hearing aids to help you hear others better.
- Hearing link can put you in touch with a Community Support Volunteer who can provide email support. It can help to have someone to talk to when you feel alone and isolated or when you need specific advice.
- Your neuro-otologist can refer you to a psychologist and/or hearing therapist. They will help you deal with the day-to-day problems of adapting to life with a hearing impairment.
- Can’t hear the doorbell, alarm clock or TV? Contact the sensory services (or equivalent) department in your Council and ask what help you’re entitled to. They can usually provide essential deaf equipment which may also include a conversation amplifier.
- Struggling to hear people who are not communicating clearly with you? Wear a hard of hearing badge and point to remind people what you need.
- If all this means you are having to take time off work, you may be entitled to benefits. Contact your Council and the Citizens Advice bureau who should be able to provide an adviser for you. You may be eligible for Personal Independence Payment (UK) among other things.
- Need help getting back to work, Access to Work can provide equipment and transportation. Your neuro-otologist can also refer you to Occupational Health to help you prepare yourself for returning to work.
- Check out the useful links page and the blog post on benefits and help here
- Consider taking a lip-reading class. Not only will this help you develop skills to help but you will get to meet others who are also dealing with the same issues. If you are in London I highly recommend City Lit College. They have a large selection of classes from lip-reading, sign language and dealing with hearing loss.
If any of the experienced deafened-dizzy-jiggly-blurries reading this want to add anything please do so..