Nystagmus and Jeavons Syndrome

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saralee82

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My daughter (just turned 13 years old) has Jeavons Syndrome, which we have yet to get under control after 2 years of increasing doses of Lamictal. Recently she's had some other issues with her eyes that the doctor is thinking is nystagmus. Although her eyes don't hurt when this happens, it is accompanied by headache and episodes last between half an hour and a few hours.

Anyone know anything about epileptic nystagmous? We are anxious especially because the doctor seems very unsure of what is going on, even though he is an excellent doctor.
 
Hello saralee,

Sorry to hear about your daughter and having Jeavons syndrome but I've never heard of the condition Epileptic nystagmous...as there's so many different forms involved with epilepsy, what I have read it's involvement with the eyes and I hope this link below can help in the meantime till other members maybe able to help you a lot more...Terry :)

http://www.sciencedirect.com/science/article/pii/S1059131103001006
 
Thank you Tez.

Some of the stories here are heartbreaking. I feel like there are so few doctors who know anything, and even then they're half - guessing.
 
Hello and welcome to CWE. I know that nystagmus can be a side-effect of many AEDs, but I haven't heard of anything called epileptic nystagmus. Was that the actual term the doctor used or did he just say nystagmus?
Also, I thought it was interesting that the doctor said he thought it "might" be nystagmus. I had thought that that condition was easy to diagnose simply by looking at the eye movements, but our good friend Wikipedia set me straight:
http://en.wikipedia.org/wiki/Nystagmus
Anyhow, best of luck with this. Keep us informed on what you find out. Best to you and your family.

Cheers!
 
Hi Arnie,

Yes, he said "might be" nystagmus - but she closes her eyes while it happens because it scares her to have them open during. . . That seemed different than most of the examples I read about. Not that there are very many.

We'll have another at home eeg in a month and see if there is any seizure activity during them. So I guess we'll know more after that.

Do you know anything about Jeavons Syndrome?

Thanks for your support.

Sara
 
saralee82 said:
Thank you Tez.

Some of the stories here are heartbreaking. I feel like there are so few doctors who know anything, and even then they're half - guessing.
Click to expand...

Your welcome but Arnie as given some good advice also.

Yes there's heart breaking stories and I've come across a few doctors over the years who haven't had a clue and I'm a very straight talker and stood no nonsense and got either throwed off doctor's books or specialists...my precious rheumo I was under, i dressed him down and he sent a letter to my GP (stating I shouldn't have spoken to him in medical terms)...what they don't understand any specialist going we're the ones suffering plus we're not dense either.
 
YES, I have wandered room to room after severe shaking physically. And my partner (girl friend) has been fighting with me to stay in one room. I force my way out, pushing her aside. In the morning i do not recall. but vague memory in a few days later. does that count?
 
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