Nystagmus - My Search For Treatment

Age: 38 - Condition: Nystagmus and Double Vision

In November, my doctor referred me for blood tests at my local hospital and Hodgkin’s Disease was diagnosed. I was shocked to hear it was lymph gland cancer but relieved to know it could be treated. So began a six month course of chemotherapy. I was casually informed just before the first of the twelve injections that I might suffer hair loss and bouts of sickness. It was just too late to change my mind. They also discovered that my spleen was cancerous so that also had to be removed. I plummeted to seven and a half stone. Fortunately I did keep my hair and steroids were given to boost my immune system. Of course I had no idea that steroids could effect my eyesight.

My double vision became worse, making it increasingly difficult to walk or judge distances. I had to hold handrails to climb steps and steady myself, but for the moment I was completely focussed on beating Hodgkin’s Disease. Thankfully remission occurred in November 1981.

By early 1982, I was well enough to reassess my eye condition. I was referred to an ophthalmologist at the Queen’s Medical Centre, Nottingham. Here I was advised that prisms, base out in both lenses, would be the answer, even though it was only the left eye that was turning outwards. The weight of the glasses had to be balanced. Nothing could be done for the nystagmus but it was unlikely to deteriorate further and so I cheered up. Although stronger prisms were prescribed after another two weeks, I thought that was an end to my troubles.

In 1983, my double vision returned and I immediately booked an appointment to see my GP. After being referred to a Derby neurologist for a brain scan, I was advised subsequently to have a myelogram. You see I was born with spina bifida so there was good reason to ensure there were no spinal problems which could be connected to my double vision. Nothing specific was found except the usual wear and tear. In the consultant’s letter it also stated that my double vision would not deteriorate any further, nor would it improve. I was so frustrated that I just threw the letter into the wastepaper bin.

You can imagine how fed up I felt when the same old problem occurred a year later. I could not just keep having time off from work in local government so I decided to take things into my own hands. There must be some alternative treatment somewhere.

I browsed through the "Alternative Health Guide" by Brian Inglis and Ruth West. Visits to a homeopath and herbalist were to no avail. I saw an osteopath who manipulated my head, neck and back, and I did feel better, but I still had double vision and nystagmus.

Then disaster struck again: I found another lump on the other side of my neck. Antibiotics did not reduce the swelling and within three weeks blood tests verified what I had secretly been dreading - Hodgkin’s Disease. I burst into tears and run out of the surgery when another six months of chemotherapy was offered. I felt like going under a bus.

However I was gently persuaded to go ahead yet again. In any case, I was informed that the new injection was like a flu jab with no bad side effects. So I completed the treatment coupled with the steroids by November 1986.

In the meantime, I was wearing my reading glasses with prisms but I was still bothered by double vision and nystagmus. What else could I do? In 1988, surgery was recommended for the left eye to bring it back into alignment with the right one, so I went ahead. It was not a brilliant result but I could see tolerably well and had no need for prisms.

By 1991, I was increasingly frustrated with my eyesight. The ophthalmologist merely informed me that all he could do was to prescribe prisms again. Here I was at square one. After another three years, I resolved something more had to be done. I was given the option of a botulism injection into the left eye, to relax (paralyse) the offending muscle. I decided to pursue it.

I returned to work immediately after the operation, feeling optimistic. I obtained another prescription without prisms again. But how do you think I felt when the double vision made a full impact the following day? I just prayed it would wear off and carried on as if nothing had happened. I even went to the gym! Within a week, thank goodness, my sight did settle down but I still had nystagmus.

Then one fateful day in February 1997, I saw double images on the TV. I couldn’t believe it - stronger lenses with prisms once more! It was at this particular consultation that I was finally diagnosed with nystagmus after seventeen years! Now I had a name for my involuntary eye movements!

Hence I was then given a -6 prism, base out, to correct the double vision, again evenly balanced between the lenses. I remember the optician having great difficulty in locating the exact place for the prisms. Within a month, my double vision reoccurred and I started to cry. I was just so frustrated with the whole business - nothing worked.

So stronger and stronger prisms were prescribed. They had to be stuck on to the existing prisms for the left eye, which was upgraded from -8 up to -12 within a short period. The double vision was still intermittent.

It returned with a vengeance in November 1997. I just couldn’t stand it any longer. The consultant gave me three alternatives: to accept the double vision, to continue to stick on prisms or have an operation on the healthier right eye to balance it with the left one. There was an eighteen month waiting list, so I had plenty of time to think about it! At this stage, my vision in the right eye was +4.25/-2 prism base out and the left was +3.5/-1 prism base out.

I was now having trouble walking, due to my right hip. While having treatment, I happened to mention my eye problems. The chiropractor suggested trying the Bates Method. One of his friends had benefited from it. He sent me a leaflet and I decided to give it a go. After all, I was completely disillusioned with my hospital treatment so I had nothing to lose.

I had my first lesson on 18th April, 1998, with Karen Banks in Nottingham. I was so lucky to have a teacher locally. In the last five months I have not looked back.

I palm at least half an hour a day in ten minute sessions - morning, evening, bedtime and sometimes at lunch. My eyes feel so much more relaxed, especially with sunning. I enjoy splashing warm and cold water morning and evening. The finger test has proved especially useful in helping me to control my double vision. If I look at one index finger held up in front of the other, I focus on the nearer one and can apparently see two fingers behind, and vice versa. Using patching glasses for the right and then the left eye, for a few minutes daily, has worked well. I can now take my glasses off to watch TV. I no longer have any need for stick-on prisms.

I certainly feel much more relaxed as a person. Even my nystagmus is not so prominent. I cannot believe the incredible results after such a short time. My parents are amazed that such simple relaxation techniques can be so effective. I have encouraged my girlfriend to take lessons for her long sight.

It just seems such a pity that it has taken seventeen years to find the Bates Method, but at the age of thirty eight, I know now there is real hope for my eyes!

Neil Casey
West Bridgford
Nottingham

Case History © Liz May