Nystagmus:
Robert's full account of his treatment EEG Neurofeedback Treatment of Nystagmus - My Account I am writing to tell you that I am the first person ever in the world to have had congenital nystagmus successfully treated. Congenital nystagmus is a physiological condition that causes involuntary movement of the eyeballs. This condition causes the sufferer's vision to be poor but can not be corrected with glasses. I have had congenital nystagmus since birth, 19 years ago. I wanted to tell you my story so that this information can be relayed on to other nystagmus sufferers’ worldwide. Nystagmus is a condition, which affects thousands of people throughout the UK and Ireland. You may have heard of the famous flute player James Galway who is also affected by this condition. Before I discovered this revolutionary treatment for nystagmus I was plagued by a number of many different problems such as bad vision, co-ordination and social problems. I experienced socialising problems, the most notably when I was trying to maintain eye contact with people. However, due to the nature of this condition, eye contact was uncomfortable for me I would become anxious and I felt the person would be watching my eyes rather than talking with me. With playing sports, especially football you can imagine the co-ordination dilemma, which caused problems with all aspects of the game. This was very frustrating, as I wanted to take part. All the eye specialists I visited all said, "Nystagmus is an untreatable condition. You will have to live with it for the rest of your life." Approaching the end of my schooling I had aspirations to become a pilot. However when I had the eye examinations done, I failed them. The requirement for this was 6/9 with both eyes and I could only reach 6/18. I also wanted to drive a car, however the requirement for this was 6/12 and therefore I failed this as well. All of these problems described above caused me to have a very low morale. I started treatment on the 24th of June 1999 in St Albans, Hertfordshire. Even after the first session of treatment I was able to keep my eyes still for a full 30 minutes, for the first time in my life. This was really amazing and also very ironic when I had been told by those doctors and specialists, "there is no treatment for nystagmus." As the sessions progressed the movement of my eyes reduced further and further until most aspects my vision were over 90% and for short periods approaching 100% I also have video footage of this which shows the permanent effect of the treatment over a year - my eye specialists back in Ireland and their contacts in Harley Street had scoffed, ”even if I got some improvement it would not hold!” In actual fact, my vision improved after I had stopped having treatment, as my Neurofeedback practitioner had predicted. At the end of my stay I had an eye test done by an independent optometrist. The results were amazing as I could read 6/9 and 3 letters on the perfect vision line 6/6 which, is otherwise known as 20/20. I have now passed the eye test to drive a car and I have actually started lessons which, was something thing I thought before treatment I would never be able to do. The standard of vision I have now is even higher than the standard required to pass the commercial pilots eye test. As a result, I have just completed my first year in college to start studying to be a pilot. The document enclosed is a full account of how this supposed untreatable condition, which effects thousands of people in the UK and Ireland, was successfully treated. I urge you to let your readers know of this new treatment for nystagmus as there are many people whose health, work and quality of life is being destroyed by this condition. Robert
New treatment for Congenital Nystagmus I have had congenital nystagmus since birth, so my eyesight has been so bad that it hasn't been possible to correct it with glasses. As a consequence, I've never had the chance to be good at sport, as I can't see the ball as well as my school friends. Also, my co-ordination is also bad, which doesn't just effect sport - it makes it hard to walk properly. I wanted to become a pilot, but this dream was dashed by my eyesight problems. Instead, I decided to try for Air Traffic Control, but I was told I would never get the job on the basis of not reaching the visual acuity of 6/9 with both eyes. At this stage I was feeling really frustrated but I thought I would at least be able to drive a car. However I failed the eye test for this as I was told the requirement was 6/12. My morale was now at a very low ebb Not just because I kept failing eye tests all the time, but also because I found it difficult to walk in a crowded area because my focus was not steady - I feared I was going to bump into someone. Congenital nystagmus is the involuntary movement of both eyeballs. The movement of the eyeball is from left to right and sometimes up and down. Nystagmus is made worse in social situations. Whenever I felt that people were watching my eyes instead of listening or talking to me, I found myself watching them, watching me!’ You may have heard of the famous flute player James Galway who also has nystagmus. This condition effects thousands of people in the UK. Nystagmus before treatment: By the time I was 18 in 1999, every doctor and eye specialist I visited said, "nystagmus is a condition, which can not be treated. It will remain with you for the rest of your life". I was not happy with this so I tried a number of alternative treatments, which only had marginal improvements, but my visual acuity remained at 6/18 with both eyes. As I approached the end of my schooling I decided I would like to pursue a career as a pilot. When I had the eye test done, which required 6/9 with both eyes, I was told I would never be able to fly commercially or even be able to fly as a private pilot, which required 6/12. In particular, my problems were: Co-ordination - This co-ordination problem with nystagmus meant that I could not adjust my focus between near and far without blurring. For example, if there was a person sitting quite closely in front of me, my eyes would not be able to focus on the blackboard as in nystagmus the eye can not comprehend the depth of field and both near and far vision became blurred. You could imagine how this effected me when playing football. If somebody was standing in front of me when the ball was being kicked from a long distance this depth of field problem would make see the person in front of me and the ball both blurred. Any sport with a ball was very difficult to play due to the poor foot or hand eye co-ordination. When playing football my skills would have been ranked at 3/10. Not playing much sport my physical fitness was low and poorly developed; I would rank my fitness at 4/10. Social - My social skills were also not good, as I could not maintain eye contact with people properly. When somebody would talk to me I would be distracted by my eyes which would make me even more self-conscious. As the anxiety increased, my eyes would begin to move even more than before. The eye rolling would cause the person to pay less attention to what I was saying and in turn, they would think that I wasn't interested in what they were saying! In a new social situation I would be as friendly as I could, but the cycle of eye-rolling and increased anxiety would severely decrease any chance of making any new friends. The Effects of the First Stage: Two months Treatment during Summer 1999: After the first session of treatment I woke up the next morning and for the first time in my life my eyes did not move involuntarily when looking at things at close range. This effect lasted for a full 30 minutes. This was really amazing and also very ironic, as doctors and specialists had told me that "there is no treatment for nystagmus" The treatment works in the following way. At the beginning of the one hour-long session electrodes are placed on your head over areas of your brain, which require strengthening. These electrodes monitor the tiny electrical signals coming from your brain cells. These signals are then fed into the computer and displayed on a monitor in front of you. Goals are set on the computer, which you are required to reach. Once you reach these goals a beeping sound is heard, every time you hear this beeping sound that area of your brain which the electrodes are over is being trained and therefore that area becomes stronger. This training then reduces the nystagmus as the control and eye muscle areas improve their functioning. Before any treatment I did a standardised neurological test and scored 2.33, which put me in the average intelligence group as far as the brain attention was concerned. This neurological test would be then repeated at the end of the treatment to independently show changes in the brain. I understand the principle of EEG Neurofeedback whereby strengthening the areas of the brain which control eye movement and eye muscle strength therefore reducing the nystagmus. As the sessions progressed the eyes stayed still for longer and longer at close range. While looking at things at long range the eye movement was reducing all the time. Each day I measured the length of time that the eyes stayed still at long and close range. When I was in London at about half way through my stay I was walking in a crowded Victoria railway station where noticed that I had no problems with avoiding people who walked at all directions - towards and away from me. I had never been able to do this before, so this was an amazing achievement. This is something, which may not seem important to you, but to me, it showed how the treatment was progressing in real, practical ways. At the end of my stay I had an independent eye test done at an opticians in St Albans High Street. The results were quite astounding. My visual acuity was 6/9 and even half way, +3 into the 6/6 line with both eyes. 6/6 is perfect vision; 20/20 at close range I could read N 4.5, which is above average close range vision. EEG Neurofeedback had given me even better visual acuity than that needed to pass the commercial pilots licence eye test, which only required 6/9 in both eyes while I had 6/9+3. At the end of the summer I then repeated the neurological test where my score was 2.98, which shows my brain was now better at paying attention and controlling eye movement overall. This put me in the +1 IQ or above average category, which is something, I have never been before. My anxiety had also decreased reducing eye movement in social situations to 88% when listening to someone and 90% when talking to somebody. At close range there was no movement at all regardless of the time of day and at long range when looking at objects the eye movement had been reduced by 95%. Though for very short periods of time this approached 100%.
The Effects after treatment from September 1999 to July 2000: In September 1999 I went to the Institute of Technology Carlow in the south east of Ireland which is the second top in terms of academic standards. I was living away from home and coping with tougher study and social issues for the first time. After the treatment of summer 1999 I noticed a number of changes in my eyes and generally within myself during the year. These changes were: The Nystagmus -Throughout the year the focus of my eyes held and in certain situations improved further. Initially I continued my focusing exercises during the treatment as Dr Kaur had advised. This would be where I would recreate the focus I did when doing the treatment. As the year progressed I was needed to maintain the focusing. By the end of the year I was only doing 3 minutes focusing in the morning. Even if I did not do any focusing the eyes would not get worse but remain at the level, which they were at. An eye test was done at my college by the resident doctor. I was able to read 6/9 with both eyes. The eye chart was only a single letter chart so no fine measurements could be taken (e.g. +3 on the 6/6 line). This shows the improvement from last summer was maintained. Studies - At college I found that my attention span was much improved with all subjects on my mechanical engineering course. This was most evident with maths. This was a core subject which I was afraid would fail me the course but I found that I was able to do the problems easier than I would have been able to do before. I found that I did very well in Power Systems - one of my subjects, which was very difficult for most people. When I was revising I found that I could remain at longer periods of times studying. A year ago I could not have imagined reaching this academic standard. My brain seemed to be in a very focused state letting me achieve these levels. This improvement not only helped me pass all my exams but to attain merit 2 which is the second highest, just below distinction. This was quite an achievement considering only 8 people passed out of a class of 30. Co-ordination - My depth of field problem improved both in the classroom and when playing sports. My footballing skills had improved considerably; most notably I could shoot and score goals with more consistency and accuracy. As I could focus more easily, my spatial awareness skills increased which made it easier to pass the ball and make predictions where the ball was going to go next. I would rank my football skills at 60% now. When taking part in athletics I had noticed my stamina had increased. I found that when I began to get tired whilst running, I would be able to focus as if I were in a neurofeedback session and increase performance. I would rank my fitness ability at 70% Social Life - As mentioned before I had difficulties making friends due to the nystagmus. However now I was able to maintain eye contact with people when talking with hardly any eye movement. This enabled me to make friends much more easily. My friends in college did not even know I had a problem with my eyes until I told them. My mum noticed the improvement of my regular eye contact when I was talking to the representatives of the mechanical engineering department at college, which increased my confidence.
The Effect of the final stage: One month Treatment in summer of 2000 Even though my eyes were at 90% and 94% treated from the nystagmus, I decided to see how much extra improvement I could achieve. When I returned to St Albans, my eyes had improved. We recorded some video footage in July 2000 before recommencing this summer’s treatment. This showed an improvement which could be seen when comparing the footage recorded in February 2000 and the footage before I started treatment in April 1999. This evidence was also supported from the EEG, which had been recorded. When I was talking to someone they were at 94% free of nystagmus which shows a 4% increase. When I was listening to somebody they had increased to 90% free of the movement. The depth of field problem (looking at an object with another object in front of it) had remained the same since last summer causing some eye movement. When looking at something at close range the eyes did not move at all, showing the same improvements as when I left Dr Kaur last summer. At long range the eyes were 99% free of movement which shows a 2% increase. As before I underwent a neurological test to see whether there was any improvement. My score of neurological attention was 3.57 from 2.98. This showed an improvement of .59 proving my neurological attention had increased, which was consistent with my improvement at studying, sport, and in social situations during the year. We began the treatment and the improvement in increasing further. When I am talking to somebody, at present the eyes are at 99% free of involuntary movement. The movement has also reduced when I am listening to someone. At the present it has been reduced 8% making the movement decreased to 96%. Further the areas we are treating are improving eye muscle strength. With the increase in eye muscle strength, I do not have to focus as much to keep the eyes still, or strain to keep the eyes still. This is a major factor in the reduction of the nystagmus and a great relief. We treated the area of the brain, which controls depth perception. This greatly improved my focus. At this stage the eye movement would only be at 5% and virtually normal. My balance has also continued to improve. I find my anxiety has also been reduced, which helps me to maintain steady eye movement in social situations - particularly when meeting somebody for the first time. Conclusion When you read what has been written above it is hard to doubt that EEG can successfully treat nystagmus and when you see the video tape it becomes a matter of fact. The professionals should have no doubt about this evidence as an independent optician validated it. Not only are there improvements before, during and after treatment, but also this condition is maintained, as demonstrated by my last visual acuity test in April. Now there is a treatment for nystagmus no one should endure this physical disability any more nor suffer due to the psychological and social consequences of this condition.
|
 Case Studies (A-Z) |
||