Our members share there own real life story, the challenges, symptoms and their journey with a balance disorder.
Poly joined our group just over a year before sharing her story below. On joining the group Polly engaged with us and from that communication we suggested Polly did seek further expert consultation to hopefully progress to a full diagnosis and more effective treatment. Poly took that advice and in this case contacted Prof Rea, read below how Polly’s drive to get to that better place in her life is now paying dividends. Thank you Polly for sharing this.
Polly’s Story – August 2024
By Polly S.
My journey into the world of balance disorders began in 2016 when I was aged 56. I am now 63. I was out one evening at a meeting in a remote village hall. As the meeting came to an end I suddenly felt very strange, unlike any feeling I’d ever experienced before. I had no idea what was happening to me. The room began to spin violently and I started vomiting. No-one knew what to do so after about two hours an ambulance was called and I was taken to hospital. By the time I arrived the symptoms had worn off. I was seen by a doctor and discharged. Although I had no idea at the time, that was the beginning of a long and unpleasant journey into the world of balance disorders!
I didn’t know what to make of what had happened that evening. Although I did have some further symptoms in the weeks afterwards and had started taking Betahistine, I had no further significant attacks for over three years. During that time, I was fortunate to have seen an ENT consultant on a six-monthly basis. I asked why I was continuing to be seen when I felt basically ok, and was told that balance symptoms such as I’d experienced tend to come back. I convinced myself that I would be one of the lucky ones for whom it never returned . . .
In 2019 the vertigo attacks began again, usually when I was stressed or over-tired, but often for no apparent reason. They would come on with no warning. I might be cooking, or at work for example, and suddenly the room would start zooming violently around my head and all I could do was to lie down on the floor with my eyes shut. If I moved, the vomiting would begin. It’s difficult to describe how completely out of control of my body I felt during those attacks. It was terrifying. The attacks would last for three to four hours and would include the spinning vertigo, sweating then going very cold, severe vomiting and what I will politely call bowel urgency. It was like being on an extreme form of fairground ride that I hadn’t chosen to go on and for which there was no off-button.
The attacks became more frequent over the next few months. I managed to carry on with my job (as a psychological therapist) for a while, but as time went on things became more serious. I was having episodes several times a week and I couldn’t eat much because I felt so unwell. I lost over a stone in weight. I didn’t leave the house unless I had my sick-kit with me. Eventually I was more or less bed-ridden and the attacks were taking over my life. By then I had been diagnosed with Meniere’s Disease (there had been some lack of clarity about this as I didn’t experience any significant tinnitus or aural fullness). The consultant I was seeing recommended that I have a steroid injection through my eardrum as this was likely to stop the vertigo. I had two of those injections. Whereas they did reduce the severity of the attacks, they continued to occur and they increased in frequency. It was then recommended that I have a different type of treatment called Gentamycin, an antibiotic which is toxic to the ear. It is administered through the eardrum and it causes a chemical labyrinthectomy in the affected ear.
I went ahead with the Gentamycin treatment as I realised it was the right decision and that I really had no choice. It made me very, very unwell. Whereas most people who have it adapt within a few weeks, for some reason I didn’t compensate or adjust to it. The only way I can describe it is that it felt as though 70% of my brain had been surgically removed. It did stop the vertigo attacks after about two weeks (thank God), but it caused a different set of symptoms which were equally incapacitating. Fortunately, I was seeing a very helpful audiologist at that time called Clare. She said I had a mountain to climb in terms of what lay ahead – that the rehab phase would be slow as my brain would be finding it exhausting trying to compensate and that I must not expect too much of myself. That was all true.
Entries from my dizzy diary from the months after having the Gentamycin include the following comments: “I feel strange as if I’m not fully part of this world. I can’t think clearly and my head is full of treacle. I am unsteady and keep getting feelings I can’t distinguish whether they’re the start of a spin or whether they’re caused by the Gentamicin treatment. I feel scared and completely disempowered. I feel on the verge of having a spin but it doesn’t materialise. I’m heavy-headed. I have an unpleasant tightening feeling in my head: brain fog and clamp-head and a frightening lurching feeling. I am distressed and I feel ill.”
Nine months after having the first Gentamycin injection I experienced further spins, though they were less severe than before. I had a second Gentamycin injection. It too made me very unwell, though I felt less wrecked than I had after the first one. A few weeks after having it I had a follow-up telephone conversation with the consultant in which I described my symptoms including the onset of visual vertigo and explained that I was unable to function. I was advised that I needed to adapt to my new normal, that as the weeks went on I should recover further from the second Gentamycin treatment. I must restart vestibular rehab exercises and I must pace myself and allow my brain to adapt and settle. I was discharged. I accepted the logic of this advice, but the months went on and my brain didn’t adapt and it didn’t settle.
I tried all sorts of self-help approaches including mindfulness. An entry in my dizzy diary from that time read: “Parts of my brain seem to have shut down. Rather than try to puzzle out why, or what I can do to bring them back on-line (which isn’t working), I will accept this and give them permission to remain off-line for as long as necessary – even if this is forever.” Luckily it wasn’t forever! I consulted a professor of balance disorders (Professor Peter Rea in Leicester). It was the best thing I have done. He listened carefully and asked pertinent questions. He very quickly recognised that I had developed a central processing disorder in which my brain had become over-reliant on my eyes for balance-related information. He consequently diagnosed Persistent Postural Perceptual Dizziness (PPPD) on top of the original Meniere’s diagnosis. He validated my experience and explained that I was in a minority of people whose brain doesn’t adapt after Gentamycin treatment. He said he sees several people each day who are where I am – it was a massive relief to hear this! He said that with his treatment plan, 80% of people in my situation go on to recover. He recommended a three-pronged approach: CBT to address the anxiety, medication to down-regulate the activity in the balance part of the brain so that it could recalibrate, and further vestibular rehab. I started taking, and continue to take, Sertraline 50mg. It is making a massive difference. Bit by bit my brain is recovering and I can engage more with life again. With every month that goes by, I recognise I’m functioning better than I had done before. I can think more clearly. I can spend time with my grandchildren. I am more independent. I don’t feel dreadful all the time. I still have good days and bad. I pace myself with kindness and try to avoid overdoing it. I make sure to do enjoyable things each day (even if this is just doing my jigsaw and some gardening). I feel optimistic for the first time in a long, long while.
What have I learnt from my experience of balance disorders? This is very specific to me and to my personal situation and I realise that many people reading this will not relate to it, but I include it as there might be other people out there who do!
My experience of Meniere’s and of PPPD has been more cognitive than physical. I’ve been confused by how little actual dizziness or imbalance I’ve experienced (except for the vertigo attacks which were most definitely physical). I understand that balance disorder diagnoses have broad similarities in terms of their presenting symptoms, but that each person will experience them differently.
I have found the following books (listened to on Audible) very useful in helping me understand my version of Meniere’s and PPPD:
- Rock Steady by Joey Remenyi
- Heal Chronic Pain – The Way Out by Alan Gordon (by substituting the word Dizziness for the word Pain, this book was very relatable to my situation)
- Mindfulness for Health by Vidyamala Burch and Danny Penman
Looking back over the years, I recognise that I have been better at meeting the needs of others rather than my own. I chose to ignore the warning signs that I needed to make some changes such as cutting down my working hours when other aspects of my life had become more demanding. I didn’t listen to my body and it followed therefore that my body had to turn to more drastic measures in order to get my attention! I believe that a familial weakness in my ears provided the perfect opportunity for that to happen.
Since being forced by the symptoms to stop, I have given everything a lot of thought and have made very significant changes. I would not have done so without having had the balance problems. It’s too strong a term to say that I’m grateful for those experiences because they have been truly awful, but I do appreciate that they’ve given me the opportunity to find a healthier way forward and I am grateful for that.
Polly.
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.
