Our members share there own real life story, the challenges, symptoms and their journey with a balance disorder.
Jez has been a member since 2019, and has kindly shared his story of the onset of his balance condition – Menieres, and his journey up to today regarding his treatment and life.
Hi, my name is Jez, 41 years old. On 24th October 2014, my life changed, and I changed, forever.
I was out having a lovely meal, in fact a free meal as we were completing a ‘mystery shopper’ review of a local restaurant (free always tastes better!). It got to dessert time, I remember feeling a strange uncomfortable sensation in my right ear, more uncomfortable than anything else. I yawned and tried to pop my ears and carried on with my meal. I’d never had any problems with my ears before and had perfect hearing, all that was about to change.
In the car on the way home my ear got slowly worse, nothing major, but I could feel it all the time now. Overnight it slowly got worse and worse, I remember getting up at about midnight and going into the spare room as I was tossing and turning with the uncomfortable feeling that was now becoming painful. It gradually increased in pain until I had that horrible throbbing, burning, intense pain radiating all across the right side of my head. I took paracetamol and ibuprofen, if there’s been anything else in the house, I would have taken that as well, I think! It felt like my ear was about to burst. About 5am it did! My ear drum perforated, and the feeling of relief was immense, the pain instantly subsided.
Yes, I couldn’t really hear anything out of my right ear but the relief that the pain had gone was awesome. I felt pretty rough as I’d been up all night and felt a bit grotty. My wife and I popped into the local walk in health clinic mid-morning, and I was examined by a nurse. Verdict, ear infection with perforated ear drum. I remember asking about my hearing and was told ‘you won’t hear much as your ear drum is saggy now as it has a hole in it’, painkillers and rest was the order of the day. The rest of the day went by pretty much as normal.
As bedtime approached, I remember standing up from sitting on the sofa and feeling a bit dizzy, I didn’t think that much of it and went to bed. From the moment my head hit the pillow my world began to spin, I moved to the spare room again and began a night which I can only describe as horrific. The room was violently spinning, the pain in my right ear returned, and every 10 mins or so I was throwing up, it was pretty grim to be honest!
As morning came my wife and children were clearly worried about me, my youngest described me sounding like a monster in the bathroom as I continued to throw up! Not a good look! I really couldn’t leave the house and felt absolutely awful, so I had a telephone consultation with my GP and was prescribed anti sickness and antibiotic medication.
Out of my 41 years on this earth this was the worse I had ever felt, hindsight is a wonderful thing but really, I should have gone to hospital, I was that bad. The next few days remained pretty much the same, deaf, dizzy, being ill, and feeling awful. Slowly the sickness subsided, and the extreme vertigo eased.
Driving wasn’t possible so I had some time off work, walking/wobbling anywhere I needed to get to. I went back and forth to my GP’s three time over the next month or so, seeing a different doctor each time, I was really concerned about my hearing. I remember describing it as like the switch had been turned off! I was told give it time to heal.
The last GP I saw did a very basic hearing test and some tests with a tuning fork. The moment she looked at me and said ‘you really can’t hear anything in that ear can you?’ will stay with me forever. I suddenly realised that no one had believed me up to this point!
An urgent referral to ENT followed, which took a couple of weeks. I went in, had a hearing test done in ones of those booths, then saw a doctor. Initially she said yes, you’ve got some temporary hearing loss but that’s what we’d expect after a nasty ear infection. Just to be sure she took my hearing test results to be checked by a consultant. She was gone for nearly 20 minutes. She returned and the story was very different, ‘I’m sorry you’ve got no hearing in that ear and it will almost certainly be permanent’, the rest of that day was a bit of a blur.
Various tests followed over the next few weeks, MRI, CT scan, etc.
I remained profoundly deaf in my right ear with my general balance pretty rubbish, every few days I had episodes of really bad balance and horrendous tinnitus (a cross between a jet engine and a washing machine on fast spin). Balance tests came back as expected, right balance organ broken. Hearing tests remained the same, profoundly deaf on the right.
After a couple more ENT consultants visits I was discharged, nothing more could be done and no hearing aid able to assist. In a mad search for some help with my hearing loss I signed up to a medical trial for a Bone Anchored Hearing Aid, one which attached to my head by a magnet, how cool!
Surgery for implant followed, BAHA processor fitted. I’ve tried for several years to get the most out of the aid but if I’m honest I find the hearing aid is of little benefit, I don’t wear it now very often at all.
The next year or so my balance seemed to be getting worse again, the episodes of really bad balance, extreme tinnitus and fatigue increased, and were happening every few days lasting a couple of hours at a time. Less often I had very short periods of extreme vertigo, lasting only 30 seconds or so, I remember one time falling up the stairs at work, sitting there for a few seconds looking around desperately hoping no one was around and had seen me! Another occasion I was out running (on a trail thank goodness), and the vertigo hit, again sitting up and hoping nobody had seen my not so graceful face dive!
I went back to by GP concerned about the impact the episodes of vertigo etc were having on my life. I was referred to the fantastic balance clinic at the Leicester Royal Infirmary, where I’m still a patient of Mr Banerjee. I’ve now been diagnosed with Meniere’s in my right ear, taking Betahistine 3 times a day, and recently had two steroid injections in my right ear drum, separated by 8 weeks or so. They don’t know if the Meniere’s is a result/triggered by the original infection or just coincidence, matters not, I guess.
Since the steroid injections the episodes have got slightly less sever/frequent, further steroid injection planned in. I’m hopefully this is the beginning of an upward trend!
I now find the hearing disability easier to deal with as at least that’s constant, deaf one side, fine the other! Social settings are tricky but coping strategy’s help to some degree. I find that the balance issue is much harder to deal with physically and emotionally because of the unpredictable nature of it, and the feeling I have to convince people how unpleasant it is sometimes.
What have I learnt/experienced? A lot about myself that’s for sure! You know your own body, if something doesn’t feel right keep pushing and get properly checked out. The shock after any sudden health event can take time to deal with, sometimes longer than you think! But things do get better and you will find ways of adapting and finding the positives.
The Menieres Society website is full of really useful information and resources, def worth a visit. Support groups, much more helpful emotionally than I could have ever thought, shout out to ‘Life on the Level’ in Leicestershire!
Recently I’ve been involved in a really interesting research project around single sided deafness (CROSSSD study, looking at identifying critical measures when evaluating hearing interventions for SSD). Great to see this particular type of hearing loss getting some attention.
I’m now much more aware about not only hearing loss and balance conditions but all sorts of hidden disabilities, the world is an incredible place full of amazing and different people. The love, support and care of my amazing wife and fantastic children has seen me through all sorts of difficult times, sometimes dragging me through! This journey would have been some much harder without them. Jez 2020
Thank you to all of our members who have bravely shared their life stories with us. We hope these stories help fellow sufferers feel less alone, and for the general public – provide valuable insight into the severity and life restricting nature of balance disorders.
Thank you to our Balance Warriors!
Please share your own story with us, so we can reach and help even more people. All are welcome to join, whatever your balance condition and where ever you live.
Please come and join us if you feel we can help and your don’t wish to face your challenges alone.
Please remember that our members experiences, treatments and opinions are theirs alone and do not replace the need for your own medical expert advice at all times.