Hi and welcome to the Chiari forum.
Many of the Chiari specialists do agree that nystagmus is a Chiari symptom....it is the uninformed Drs that do not feel Chiari gives us ne symptoms let alone our eyes down beating...these same Drs also do not feel ne medical intervention is required.,...
Find a true Chiari specialist to help guide u and get u tested for ALL related conditions.
Hello
My daughter who has Chiari has it side to side. I also have Chiari and do not. I do have a strabizma however....
I recently had an MRI and a mild Chiari malformation was found. I work among Dr.'s and unfortunately, I have just enough medical knowledge to make me obsessively curious about my own medical issues. Haha So, I have been researching a lot about Chiari and unrelatedly had been curious about the nystagmus, just like yours with shaking side to side, I've had my whole life. It wasn't until today that I began to wonder if the two were related. Then I found your post here. In spite of the advances in the understanding of Chiari Malformation, it seems there is still a long road ahead. There is a lot of debate in the medical world over what is caused by Chiari and what isn't. I'm going to make an educated guess and say that this "gaze induced" nystagmus may just be a variation of the Chiari symptom that is experienced by some and not others. If that makes any sense.
hi there!
i dunno if it's necessarily related, but my vision has been jumpy/shaky CONSTANTLY for the past 2 1/2 years. i don't have nystagmus though. this is where it came up with the MRI's and the possibility of chiari or pseudotumor cerebri. i think something has to be going on in there to be causing it--at least in my case. so i'm not surprised some is related to chiari, but i know it's definitely associated with vestibular disorders and that junk.
i hope you find some relief!
Tina - Oh! I also take Topamax! Maybe it is due to the Topamax. Thank you for suggesting that! I will ask my doctor about that.
Ray - I have never had a VNG test, I should ask my doctor to order that test? I'll do that next time I see the doctor.
selma - I hadn't thought to keep a journal. I keep a migraine journal for my migraines, but I don't keep a journal for symptoms like nystagmus or any other neurological symptoms like that. that's a good idea. i should do that, that way it would be easier when talking to my doctor about it. thanks!
I had nystagmus that was side to side too, I think they called it jerk nystagmus, I couldn't look to the right without my eyes jerking back to the center. It made me really motion sick because I couldn't take in any peripheral information visually, it was all blurry. I don't know if it was the Chiari's causing this or the problem I had with a disc in my neck, but I don't have it anymore. I had also been taking Topamax, which can cause Nystagmus. If you are on any seizure medication, you might want to check to see if nystagmus is one of the possible side effects.
Tina
Hi Marileew,
I had the same type of the side to side movement.....and I did not get it often.
Do u have a chiari dr?
U may want to discuss this with him/her and I do hope u r keeping a journal, this will help to remember all that is going on plus the length of episodes and how often they occur.
As Ray mentioned, the typical nystagmus is normally a downbeat of the eyes, but u really need to get to a chiari dr to see what else this may be attributed to.
I did not report mine since it did not "fit" the typical findings and was scheduled for surgery.
Please keep us posted
"selma"
Hi,
Have you had a VNG test?
Do you suffer vertigo?
Downbeat nystagmus is normally associated with Chiari but there are many conditions that cause it.
Ray