My name is Robert Joscelyne and I am 19. I have undergone this new treatment which has successfully treated nystagmus.

Principle of EEG Neurofeedback:

When treating nystagmus EEG Neurofeedback works on the principle of strengthening
the area of the brain which controls eye movement and eye muscle strength.


The Process of Treatment:

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
neuro signals coming from your brain. 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, everytime you hear this beeping sound that area of your brain which the electrodes are over is being used and therefore that area becomes stronger. This strengthening then reduces the nystagmus as the control and eye muscle areas are increasing in strength.


Nystagmus before treatment:

I have had congenital nystagmus since I was born 19 years ago. 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.
With my hopes dashed I decided to try for Air Traffic Control and I also was told I would never get the job on the basis of my eye sight. At this stage I was feeling frustrated I then thought I would at least be able to drive a car, when I was told I could not do this my morale was very low. Not just failing eye tests all the time I also found it difficult to walk in a crowded area with the fear I was going to bump into someone. This coordination problem was also nystagmus related. The eyes would move even more if I was looking at an object with another object in front of me (depth of field). 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. My social skills were also not good as I could not maintain eye contact with people and they would presume I was not interested in them. I would also feel anxious when they would look at me causing me to say less due to the nervousness.


Treatment from the 24th of June to the 17 of August 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 30 minutes then began moving as they did before. 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 eyes would stay still for longer and longer at close range. While looking at things at long range the eye movement was reducing all thetime. When I was in London at about half way through my stay I was walking in a crowded Victoria railway station where I came to notice that I had no problems with avoiding people who walked at all directions at and away from me. I had never been able to do this before, this was really quite amazing to do something which does not seem that important but shows how the treatment was progressing. At the end of my stay I had an independent eye test done in the High Street of St Albans. The results were quite astounding my visual acuity was 6/9 +3 in both eyes and at close range I could read N 4.5 which is above average close range vision. This proved the EEG Neurofeedback had given me the visual acuity to pass the eye sight standard for a pilots licence 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%.


The Effects after Treatment:

After the treatment I noticed a number of changes within myself during the year. These changes can be divided under the following headings

Sport:
My footballing skills had improved considerably most notably in the areas of my shots being alot more consistent and accurate I could focus easier when playing therefore getting into the game easier and my spacial awareness skills had also increased therefore making it easier to pass the ball and make predictions where the ball was going to go next. I would rank my football skills at 6/10. When taking part in athletics I had noticed my stamina had increased. When I would begin to get tired when running I would be able to focus like I would when I was doing the treatment therefore allowing me to continue on. I would rank my fitness ability at 7/10.

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 easier. My friends in college did not even know I had a problem with my eyes until I told them.

Studies:
I found that my attention span was much improved. This was most evident with maths. I was able to do the problems easier than I would have been able to do before. When I was revising I found that I could remain at longer periods of times studying. This improvement greatly helped me pass all my 7 exams the first time around thus giving me a place in second year.

Throughout the year I improved my eyes through focusing. This would be where I would recreate the focus I did when doing the treatment. As the year progressed I was able to do less and less focusing to improve my eyes. By the end of the
year I was only doing 3 minutes focusing. 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 eg +3.


Treatment from 24th of July to the 27th of August 2000:

When I returned back to St Albans the eyes had improved. 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 remained at 88% free of the movement. The depth of field problem (looking at an object with another object in front of it) had remained the same causing eye movement. When looking at something at close range the eyes did not move at all just like when I left last summer. At long range the eyes were 99% free of movement which shows a 2% increase. We began the treatment and within 7 sessions the eye movement was decreasing when I would be talking to somebody. The reduced eye movement at this stage was about 2% making it 96% free of nystagmus.
Throughout the sessions this movement continued to reduce. At the present it is at 99% free of involuntary movement. The movement has also reduced when I would be listening to someone. At the present it has been reduced 8% making the movement decreased to 96%. The areas we are treating include eye muscle strength. With the increase in eye muscle strength I do not have to focus as much to keep the eyes still. This is a major factor in the reduction of the nystagmus. We treated the area of the brain which controls depth perception. This greatly improved my depth perception, at this stage the eye movement would only be at 5%. My anxiety has also being reduced this help decrease eye movement when in stressful situations. An area which is being treated is adjacent to the part of the brain which controls balance, from this I have found my balance to have improved.


Video Evidence:
Before I had any treatment I had documented my nystagmus with a video camera. I also took a recording after the first summer of treatment and then another one during this years treatment. I have a tape with the 3 pieces of video footage from the periods described above.

Conclusion:
When you read what has been written above it is hard to doubt that EEG Neurofeedback can successfully treat nystagmus and when you see the video tape it becomes a matter of fact.

You can contact Dr Kaur if you have any questions, please write to
Dr Kaur BSc MSc Ph.D FRSA who practices at
Dolphin Lodge,
Dolphin Yard,
Holywell Hill,
St Albans,
Hertfordshire,
AL1EZ,
England.
or phone 0044 1727 839533
or e-mail surinder.kaur@USA.net
You can e-mail me at itc@ireland.com if you wish to ask any questions.

Attention Robert,
My name is rebecca kelly. i live in australia, victoria, 4hrs north of melbourne in a small country town. Myt first child, Jack (7 month old) has been diagnosed with congential nysnagmus. it has deveasted me. After going to a specalist at the troyal childrens hospital and being told he won't be able to drive (most likely ) and that there is not treatment avaivle has shocked me. we were referred to the Royal Victorian Instutis of hte Blind (RVIB) who will see us every 6 weeks. Again we were told no treatment is availble. you letter has inspired me, especially since you are only 19 and are willing t o share your infor and care for others. please could you make contact with me or anyone else for that matter and try and shed me some light, places to go for further assessment, treatments etc. i am willing to travel overseas to the UK or US. There doesn't seem to be anything offered in Australia. I have looked up every web site i can find and read heaps about possible treatments but i still don't know where to start. do you have to have anyhting done prior to having this EEG Neurofeedback treatment?? please help, ta bec.

Hi there, don't despair! My daughter was born with CN and just graduated ( with honors) from High School and drives a car!!! Her best vision is 20/60 and there is nothing that she can't do. Ok so maybe she doesn't see as good as some, and maybe she has a harder time playing table tennis- Up until 2 years ago, we didn't even know that she had low vision. Relax and try to enjoy every moment of your baby growing up. contact a low vision specialist (ours was affiliated with a large teaching hospital at a university). Depending on how low the vision is- they might suggest early intervention. Catie had no special help at all. It all depends on what is available and how much help your child will need. feel free to e-mail me at mrskurch@aol.com Good luck

It is more than 2 years since I started my Neurofeedback Treatment in June 1999 to treat nystagmus. I am pleased to report that the Neurofeedback treatment is successful and long lasting. I thought I would post an update which is below. The treatment effects are stable and the focus that the treatment has given me is there for good. If I just keep up the focusing the strength of the eyes can only get better.
Nystagmus & Peak Performance Update


Before I started my 5 day peak performance treatment on the 12th of April 2001 I had stopped practising my focusing exercises for a number of months due to a serve illness. I was not able to get up for ten days. This was having an effect on me at college. My marks in my subjects started to decrease due to the lack of focusing. My continuous assessment results were in the region of 40% to 50% for an exception of two subjects. My concentration and motivation was poor. I found myself in a dreamy low performance state.
Due to the illness and the lack of focusing (3-4 months) I found my sight was not as sharp and there was a slight fast movement unlike the eye movement I originally had.

I had decided to book myself in for peak performance training for my course the year before. In late March I rang Dr Kaur with the arrangements for my 5 day visit and I updated her on my performance at college and about my eyes. I told her the effect of the illness and she asked how much focusing I was doing. When I told her I had stopped a few months ago she was horrified! Dr Kaur advised me to restart the focusing, which I did. I found tapping into the neurofeedback training again it came naturally to me. By the time I went to St. Albans for peak performance training two weeks later I was nearly back to my original strength in visual acuity. When I started peak performance training for motivation and attention I found that along with the clarity of the brain the visual acuity went back to full strength within a few minutes of my first session
When I began to study for my Mechanical Engineering final exams in June I noticed a big improvement in my concentration which gave me very good results at the end of the year (you might have seen my earlier report in the Nystagmus Newsletter. After the illness my motivation and attention span for studying were poor but after the peak performance training in April I found that I could now study for up to six hours a day, solidly. This ability to be able to sit down alone and study contently, for such a long period was very satisfying. This new improved way to study showed in my exam results. My average mark was 67% this was a great improvement from what I had been getting throughout the year. I got a merit 1 for this mark, I was only 3% off of getting a distinction the highest grade available. This average was an improvement from my first year exams where I achieved a 60% average.

Thanks for the peak performance training I am still on course for achieving my dream becoming a pilot!

Incidently during this time I went tothe opticians to get an update of my eye sight. My vision was 6/8 with both eyes as I expected given the acuity of my day to day vision that is my vision is as stable as ever.


Long Term Effects after 5 day Peak Performance and Nystagmus.

At college I found that when I was in a lecture I noticed that the toning sensation occurred as I would focus on the board. This toning effect seemed to increase the muscle strength in my eyes. I also felt more confident at college because my eye contact had improved and I felt no anxiety.

With sport there were also further improvements I enjoy a game of tennis and I have found since April my game to have improved. I am able to follow the ball with my eyes with greater ease than before. This leads to a more accurate shot and therefore more enjoyable games with my friends.
I took part in a session of karting with my friends a few weeks ago. When getting prepared with the overalls we needed to wear, I noticed a sign which read "All persons wishing to participate in karting must have a good standard of eyesight". I discovered that I could compete with my friends (who have normal eyesight). On a number of instances overtaking them in the race. This is a stark contrast of the specialists who said I would never be able to ride a bicycle safely!

At work this summer I worked for the summer with a building contractor. He regularly required me to read writing on signposts, this is a reassuring sign that the treatment has been a success as a fully sighted person required my assistance in reading small print or other times it was at distance.

You can contact Dr Kaur BSc MSc Ph.D FRSA who practices at
Dolphin Lodge,
Dolphin Yard,
Holywell Hill,
St Albans,
Hertfordshire,
AL1EZ,
England.
0044 1727 839533

or you can contact me Robert with any questions at itc@ireland.com

Hello Robert.
I really value your insight and personal experience with your treatment and am very happy that things have worked for you.

Do you know if this therapy is available in Florida?

Robert, You are the answer to a mothers prayer! Thanks for posting your story and giving us something to hope for!!!

Sue

P.S. My son is 13.

hello i am 25 and disgustingly new at this and also i have more than just nystagmus that messes my eyes up so if there are typos and the like, oooooops...

anyway i am looking to ANYBODY that can shed some light on my situation...
about 3 years ago i had a tumor removed from my 4th ventrical and from that surgery, more surgeries and a many problems i STILL have double vision,near and far-sightedness, eye fatigue, poor coordination and crumby depth perception as well as nystagmus.
for all these years i have seen a neuro eye doctor and it seems like everytime i ask he doesnt have anything helpful at all to say about when/if my eyes will heal or any therapies i can do in the meantime.
i have never been one of those types of people that where content to patently twiddle my thumbs and wait. it seems like every neuro doctor ive been to says just about the same thing...nothing.

needless to say i had my annual checkup this month and i doubt the doc knew the effect his words had on me but lets just say it was the straw that broke the camels back for me. so, the sliver of hope i had before was smashed to bits.

so now i am totally without any hope. the only reason i am still alive or not too horribly depressed and somewhat sane is my total stubborn will and inner will to fight, basiclly since i have nothing to hope for i am not throwing in my towel cause i'm too ticked off.

to sum up my ramblings i am seeking any info for potential therapy that might give me back that small sliver of hope again.

anyone with anything to tell me or advise me on please feel free to speak up and email me. (but due to my multiple eye symptoms it might take me a day or two to get to emails, so be patient with me)
-mimi