Obicularis Oculi Neuromyotonia

[honeycw27]

Hi...
     Ive been suffering from eye lid flickering and eye vibration..when i half close my eye my eye lids both flutter uncontrolably and when i look at things everything looks like its vibrating. Ive suffered this for the past 10 months..it never stops ..even when i close my eyes i can still see it twitching/vibrating...at first my opthalmologist thought it could be cured or settled with botox injections...ive had over 24 injections with no cure of relief so i was referred to an neuro-opthalmologist at the oxford eye hospital Uk ..i actually got to see the professor who was head of oxford...when he saw my case he says he ws amazed as hes never seen a case like mine in all of his 40 years of practice which wasnt great for me..they tested my blood for potassium deficiency etc and they all came back normal . I also had an EMG where they place a needle around the muscles of my eye and measured the frequency using electrodes..my results showed severe abnormalities and were in line with a condition called neuromyotonia..this is an extremely rare condition of which they have only had a few cases over the years...it is highly disabling as i feel dizzy and off balance when it try to walk round...ive had to stop working and stop driving and to ne honest ive been pretty much house bound for the past 10 months...im 27 and used to be the life and soul of the party but now im a shadow of my old self..im on anti depressants to help me cope with the change...they have told me it will be trial and error for the next few months trying different courses of drugs..at the moment im on a course of phenytoin 200mg per night to see if this helps but have been told they take at LEAST 4 weeks to get into your system...im only on  day 2 of week 3 and so far havent noticed any impovement but i was just wondering if anybody had heard of this condition and could offer any advice in regards to treatments as i want my life back and fast...with the condition being so rare theres not much information out there have any of you got similar symptoms or can anyone offer any advice for poor little me??

Thanks
Honey :) x

[Vanda8]

Hello,

My symptoms almost mirror yours. However, the eye symptoms are somewhat different. I can still see, yet during the day it gradually becomes worse, moment by moment. Until, the eyes begin to close all by themselves. I have to literally TRY to keep them open. It can be a horrible experience. A person with this condition, like you and me, we just sit there trying to OPEN our eyes, while others around us are looking on not realizing what is going on. Gratefully, my husband is a physician (semi-retired) and an anatomist so he knows his anatomy and most medical issues, but this totally stumps him.

My eye doctor has told me that one eye see in a normal line - while slightly over where it should be, while my other eye is in and upward slant, with the downward slant going to the outside of the eye socket. So, at times, while looking at my husband, I he can have four eyes.

I feel your pain!! I no longer drive, it makes me feel drunk. REALLY drunk. I get horrible headaches. Whether this is neuromyotonia, or eye related, well ... who knows. My muscles hurt like everyone else. I cannot exercise, walk, work out, and this is not me trying to get OUT of doing this. I would LOVE to do this. I would love to climb a mountain.

My facial muscles can turn my face into the JOKER!! No kidding. It actually scares the nurses. Heck, it hurts AND scares me.

It took me over 20 years to finally get a diagnosis. 40 years ago, I was first diagnosed MS because I do have white matter lesions. Why? Because the neuromyotonia can tire our diaphragm and prevent you from getting the oxygen you need. Yes, really!! Especially during the sleep and resting stages. If your oxygen rates oscillate, now you know why!!

I am on Gabapentin and Tegretol (Carbamazipin) plus about six other items. Hope this is helpful to some!

[Ray T Oyakawa, MD]

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[honeycw27]

Thanks for your reply....yes ive joined a few forums regarding isaacs but like you they mainly have the symptoms in there body....i think my symptoms are a mixture of superior oblique myokymia and orbicularis oculi neuromyotonia....i think they might give me tegretol next if this phenytoin doesnt work but im awaiting my appointment to come through to see what my next options are so will keep you updated...i tried baclofen earlier this year but was so poorly off it i was literally like a vegetable was awful so discontinued the treatment....how was the tegretol when you first started to take it and how long before you noticed a difference? the professor who i saw said that they take 4 week minimum to get into your system was this the case with you?? thanks for replying... i find forums like this really helpful as they give you great feedback and apreciate your reply :)
Honey x

[shimfee]

Hello!
I also have this illness, but not affecting my eyes so much.  Occasionally, my eyelids will twitch.  Mostly, it affects my legs, causing muscle twitching and spasms, waking me at night several times and then pain the next day.
I am on Tegretol XR, which helps.  Baclofen is a muscle relaxer that I also use.  I only take my meds at night, as they make me sleepy.
Check out this link for a great way to meet others like us:
http://www.inspire.com/groups/rare-disease/discussion/isaacs-syndrome/?page=7
The disease is also known as Isaac's Syndrome and other names.
Hang in there, Honey!
~~shimfee