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Nystagmus

by hereticmnk, Nov 13, 2008 07:59PM
I was diagnosed with congenital idiopathic nystagmus due to my prominent vestibulo-cochlear reflex as a kid. A few years ago I was having pain in my legs and trouble sleeping and thought that my nystagmus was due to an underlying condition like fibromyalgia and told my doctor about my concern and a muscle biopsy revealed that I did have fibromyalgia. The pain is not that bad and my insomia is gone. I was wondering if I could take anything for my nystagmus and if there was a way to remove the "idiopathic" and know what causes it with an MRI scan or something like that. Gabapentin and Baclofen are usually for acquired I have heard. I have also heard about NMDA receptor blockers usually used for Alzhimers that help with nystagmus i.e.Memantine (Namenda). I just haven't heard anything new about the disease except a scientific article that I came across about the benefits of Gabapentin in treating nystagmus. Any help on this issue would be appreciated :)
P.S. I am not a big fan of surgery or Botox.
Member Comments (2)

by Joan M Pernoud, MD, Nov 13, 2008 08:50PM
A recent article on the subject regarding ************** of congenital nystagmus is in the
Archives of Ophthalmology Vol 124 No. 6, June 2006 pp 916-918.

As far as I know, use of these drugs is still in the early stages and there is no consensus on what is optimal treatment.

I suggest you visit a neurologist or neuro-ophthalmologist in a medical center and consider trying the medication to see if you respond.

by hereticmnk, Nov 16, 2008 05:34PM
To: Joan M
I actually dont mind visiting a neuro-opthalmologist and chiping out 500 bucks (dont have insurance) but I just need to know that there is going to be any return on my investment. I actually do happen to live right by where you practice and I am really considering going to the only place where they have any practicing neuro-ophthalmologists , WASHU.
thank you for your reply.
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