In order to maintain normal vision your nervous system has developed an extraordinary ability to keep viewed objects of interest focused on the central region of your retina, called the fovea, both at rest and with motion.

If your eyes are involuntarily moving to and fro at too great a speed (a symptom called nystagmus) while you are attempting to focus on an object, your vision will be degraded. Often this blurring of vision is accompanied by the illusion that the environment around you is moving.

We call this sensation oscillopsia and it is often accompanied by a loss of equilibrium. These problems are quite common in MS patients and often left untreated.  The more severe forms of nystagmus in people with MS (called acquired pendular nystagmus) are easy for an observer to recognize since one or, more often, both eyes are constantly moving in a pendular or elliptical pattern. Subtle forms of acquired nystagmus or difficulty maintaining visual fixation with motion (caused by an impaired vestibule-ocular reflex) are more difficult for an observer to see, but can still significantly degrade vision and cause oscillopsia with motion (walking or driving or turning the head) or certain positions of the eyes (looking to one side or the other).  

The goal of management is to reduce visual blurring or oscillopsia by slowing down the speed of the nystagmus or compensating for the abnormal eye movements. Those individuals with an impaired vestibulo-ocular reflex without spontaneous nystagmus (vision degraded only with head motion or movement) must maintain head and object (words) stability during tasks such as reading.  General management of all forms of nystagmus begin with use of stabilized large print for viewing. Patients with markedly asymmetric nystagmus may benefit from patching the eye with the greater movement.

A number of medications are partially effective in slowing down the speed of nystagmus and improving vision. All of these medications are worth trying if your nystagmus is significantly affecting your vision.

1. For typical acquired pendular nystagmus the first drug of choice is gabapentin slowly increased to the highest tolerated dose; second line treatment is usually Memantine (10 mg four times a day) for people who do not respond to our tolerate gabapentin.
2. For downbeat nystagmus (fast phase of nystagmus beating downwards) there are reports of benefit with 4 aminopyridine (Ampyra) and clonazepam (0.5 to 1.0 mg twice a day). I prefer 4 aminopyridine as the first choice of treatment because of the possible sedation associated with clonazepam.
   

Other forms of nystagmus in people with MS are less often associated with persistent degradation of vision or oscillopsia; but if treatment is required, I would recommend the same trial of medications.

For intractable nystagmus that does not respond to drug treatment there are several treatment options, but few of these options are tolerable or readily available in most communities.  Optical devices (thick contact lens) that negate the visual effects of nystagmus (high-plus spectacle lenses in combination with high-minus contact lens) were pioneered by my former colleague in Cleveland, Dr. John Leigh, but were never well tolerated by most patients.

Several years ago I heard that electro-optical devices were being developed to measure and record the abnormal eye movements constantly and use real time image shifting technology to maintain object fixation. I am not sure where this technology stands at present, but it would certainly be an interesting technology to incorporate in the future development of “Smart Eye Wear” devices.  Some investigators have used botulinum toxin injected into the extraocular muscles (those that move the eyes) to treat refractory nystagmus, but this effects normal movement of the eyes (causing double vision) and lasts only for a few months.

-Rip Kinkel, MD

ECTRIMS Meeting Boston MA
September 10,2014

As I return to Boston for the start of the largest international MS meeting of the year, my thoughts have turned to the many wonderful resources that were and still are available to patients and their families in this area. From the many comprehensive MS Centers to the outstanding universities and research labs, Boston is truly an amazing place for people with MS. But one additional Boston area resource that is available in very few other locations around the country and often helpful to the many women with MS is a store in Brookline called Good Vibrations.

As the name suggests, some may call this a sex shop but it is unique among enterprises of this nature with it’s attention to the needs of women (as well as LGST couples) and it’s focus on education. The staff are provided with extensive training and I’ve never heard of customers feeling uncomfortable with either the location or the store atmosphere. I’ve even heard of mothers and daughters visiting the shop together. Their emphasis on education is remarkable with a staff sexologist, Carol Queen PhD, available. In a world where the management of sexual dysfunction seems confined to improving erections in men, and medical doctors are still of little help to women with sexual dysfunction, it is good to know that there are resources available to women with these problem.

There are Good Vibration stores also available in San Francisco, California although I have no personal knowledge of these stores. If you know of similar resources available in your community, please comment so we can post this information for other patients and families.

So with the ECTRIMS meeting now underway, take some time out to visit Good Vibrations if you live in the area and you think this may help. After all, a healthy sex life has been shown to benefit fatigue, pain, sleep disruption, mood and well being.

I will now return to the meeting and provide updates later this week or next week on new management strategies that may be of benefit to you now or in the near future.

Good Vibrations
308 Harvard St
Suite A
Brookline, MA 02446
goodvibes.com

-Rip Kinkel, MD