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Discussion Starter · #1 ·
I recently had my visit to the neuro, i have to go every 3 months. everything seemed to be going fine with the exam until he had me do the heel to toe walk..or should I say try to do it.

I couldn't even put one foot in front of the other without falling sideways. I had failed the romberg test before but had been able to do the heel toe walk up til now. I had no idea I was so off balance so it came as a total surprise. The only other thing that has been bothering me lately have been worse than normal headaches and going blank while trying to remember something like names or phone numbers.

I have been taking carbatrol for almost a year for headaches that he thought were coming from problems with my oppicital nerve. He took me off that since he now thinks my headaches are not caused by this. He also said the balance issues might be from the carbatrol. I have to go back in 2 months and if I have not improved he will do another brain mri. He seems to poo poo the idea that cns lupus is causing my problems but my rheumy thinks the lesions on my brain are from cns lupus...mainly because almost all my symptoms where central nervous system symptoms when he first dx'ed me.

My question is geared to anyone with cns lupus. Have you had balance problems and terrible headaches that are mainly felt all over the head as intense pressure, like your head is about to explode? Also how long would carbatrol take to leave the system? Trying not to worry because it makes my headache worse but don't know if I can wait 2 months with this headache. Thanks for any input.

Mary
 

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Discussion Starter · #5 ·
Thanks for all the info. on the carbatrol Lily. I had a sheet printed out at the drug store but it didn't list but a few side effects...don't know why I never thought to look it up myself...just assumed they were all listed. That could explain the big bruises I have been getting..I even posted a few months ago about! Also swelling and reduced urine output and burning, all since I've been on it.

Maia, your family must be just as wacky as mine! They are were laughing at me doing my drunk test! I had to laugh at myself too...I have never been drunk and now I know I never want to.

Thank you too Lazylegs, I am feeling much better today. Thank God for a headache free day! The neuro gave me a dose pack of prednisone and I take the last dose tomorrow, hope I stay pain free at least long enough to get some cleaning done.

Love,
Mary
 
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