Acquired Nystagmus – one woman’s story

Meeting the challenges of Acquired Nystagmus – a patient’s perspective

Read one woman’s experience of discovering she has Acquired Nystagmus

Personal background

In 2015 I experienced the sudden onset of acquired nystagmus (AN). This was completely without warning. It had an immediate and devastating impact on every aspect of my life and wellbeing.

I now have some understanding of nystagmus and oscillopsia and how it manifests itself, but at the time I was completely unaware of the condition. The experience was very frightening and its initial effects were shocking and the source of great personal anguish and anxiety.

Not having a diagnosis for such a difficult and debilitating condition affected my mental health. As a professional and successful person, this quickly became an existential crisis.

Since acquiring nystagmus, I have relied on my professional knowledge, personal skills, and resilience to cope. This is an account of some of my experiences and perceptions of my journey and how I overcame the significant personal challenges which emerged. I hope my experience will help others understand this complex condition and that it will influence improvements in diagnosis and care.

Initial manifestations

Initially nystagmus manifested itself as a difficulty reading print. This quickly escalated and I became aware of oscillation. This occurred about a year after a routine sight test which had indicated my eye health and vision were good.

I was aware I had cataracts and consulted privately with a surgeon, who seemed more concerned with receiving my instructions to undergo private surgery. After I explained I could not afford the procedure, his attitude became brusque. I was deflated by the experience.

At the end of 2015 I was involved in a fall whilst on a bus. The driver braked suddenly and I fell, banging my head. Soon after this incident my condition deteriorated. I began to misjudge depth and realised my reactionary processes were not normal.

Effects on daily living

Daily symptoms differed greatly and appeared to be adversely affected by issues such as stress, pressure and tiredness. These issues increased my anxiety and as a result, the stress/nystagmus cycle continued.

Light and movement aggravated the situation and created difficulty with balance and depth perception which meant mobility was problematic. There appeared to be delays between my brain and coordinated foot movement. Stairs, uneven surfaces, patterned flooring combined with little peripheral vision meant getting around became dangerous.

Most people are oblivious to the dangers that cyclists, motorists and urban living can have on someone with nystagmus. Most concerning was the fact that my disability was completely invisible to others.

Occasionally I felt disassociated with reality and had a feeling of “not really being there”.

Moving around in public places resulted in a state of hyper vigilance and the automatic fight or flight response made things worse. Visual disturbances followed with the inevitable loss of confidence.

Impact on Quality of Life

As a self-employed professional person, I was forced to adapt to working from home which saw a reduction in my productivity. I was unable to maintain my previous professional workload and standards because I simply could not concentrate.

I experienced a loss of my independent lifestyle and my confidence was severely affected. I was forced to refrain from activities which I enjoyed and which provided exercise and recreation. I was no longer able to dance due to the loss of balance.

The things we all take for granted on a daily basis suddenly ended, which further affected my self-worth. I was no longer able to drive and did not feel safe on public transport. As a passenger in a vehicle my poor speed and depth perception caused hyper anxiety. My brain saw objects as dangers and the resulting stress was unbearable. Nausea was a common feature.

Everyday shopping was an activity to be feared and was carried out only when necessary and as quickly as possible.

NHS Interaction/Diagnostic Journey

It was clear at the outset of my interactions with the NHS that there was limited understanding and empathy in relation to the impact the condition was having. My initial panic turned to frustration and worry that the answers I needed were not forthcoming.

I was naturally looking for a clear diagnosis and treatment plan. The scientifically validated data I expected to be available did not exist and the thought of a prolonged period of pre diagnosis added to fear and anxiety.

My initial consultations with my GP were poor and the negative approach was very disappointing. The GP’s comments “Oh god, this is going to take a long time to find” combined with a resigned attitude left me without confidence in their service.

A change of GP resulted in subsequent referrals over a long period to ENT, Neurologists, Ophthalmologists and specialist Neuro-ophthalmologists. Every consultation was preceded with hope and expectation on my part, but the often arrogant and apparently dismissive responses of the individuals, combined with little direction or progress left me with a sense of hopelessness. I was nevertheless immensely grateful for their efforts.

My assumption that the medics would recognise and understand this condition and identify a treatment path were soon dispelled and I realised I was naive in my expectations. The horrendous feelings when leaving a consultation knowing that the experts have no meaningful treatment options to explore should never be underestimated. 

Constructive feedback to health care professionals

It is abundantly clear that most consultants and doctors are overworked and under a great deal of pressure. The effects of these pressures have a detrimental impact on anxious patients when they manifest themselves in negativity, arrogance and an air of disinterest.

As a patient awaiting an appointment, the anxiety commences long beforehand. Hopes of anticipated breakthroughs in diagnosis and treatment challenge the mind. The subsequent disappointment of a swift consultation where the medical professional indicates that they have never seen such a condition, they heard about it once and by the way, there is no cure results in indescribable anguish.

Perhaps there needs to be training and awareness in emotional intelligence and the importance of maintaining positive professional standards and qualities when dealing with patients.

The relationship between a patient and their medical professional is dependent on confidence and trust and, once this is damaged, progress is extremely difficult. 

The amygdala in each of us causes constant review of situations and as a result the anxious patient easily notices indifference, pomposity and lack of knowledge and empathy. This is amplified when clinicians demonstrate tiredness and lack of engagement during a consultation.

A positive patient experience is wholly dependent on the approach and attitude of the clinician. Negativity, with comments about budgets and managers not liking a particular decision, is certain to crush trust and confidence.

Information in written format would be invaluable in addition to signposting to support networks and sources of reliable, trusted data.

Alternative Treatments

To reduce personal stress and anxiety I underwent the following alternative treatments

Reiki, Acupuncture, Cranial Sacral Therapy, Deep Tissue Massage, Reflexology, Bioelectronic body therapy system, Nutritionist, McTimoney Chiropractor, T’ai Chi, Yoga

Registration and denial

Visual acuity and peripheral vision are measured during an eyesight test. When conducted in the calm environment of an eye clinic my vision was recorded as good and not below the standard for registration as sight impaired. The consultant told me my sight was perfect.

The examination disadvantages patients with my condition as it took no account of the difficulties in standing and moving. This aspect of my care has left me extremely angry at the process and feeling the decision is unjust.  My vision is by no means perfect as described by the consultant and a failure to take into account my ability to carry out day to day activities was ignored. I believe the system failed me at that point and denied me of the support registration could have provided.

Opportunity to learn and develop

My personal care journey has highlighted many negative aspects of diagnosis and the need for a treatment pathway. The support and help of charities and self-help organisations has been invaluable.

I felt I had fallen between the gaps in medical science and that I was alone and without hope for several years. If I had been referred to an ECLO or to the charities RNIB and Nystagmus Network at an early stage I would have been able to cope far better with the challenges nystagmus brings.

The development of a potential Nystagmus Care Pathway is a true beacon of hope for the future. This will have the potential to end the postcode lottery of treatment and diagnosis standards and will see a uniform strategy for all.

This encouraging development must include access to support services at an early stage especially where there is difficulty in establishing diagnosis.