Hi Porkette,

I'm sorry to be so long it getting back to you, but I had surgery on my back on October 11, and what with one thing and another I have been busy recovering strength.

I stopped the Gabapentin, tapering off and ending on November 10. I was on 3600 mg/DAY and the withdrawal was hell. I guess it's like the withdrawal from benzodiazepines.

My seizures are only orthostatic: they happen when I stand up and walk a few steps. They only happen during the day.

There are both positive myoclonic seizures (shaking of various parts of my body) and negative (complete relaxation of my muscles and I fall to the floor). The second type, negative, happen far less frequently, but 5 times since July, are completely unexpected (except they happen when I stand up) and I haven't gotten seriously hurt, thank goodness.

But they completely stopped me from driving or being alone. I got a wearable alert in case I fell when my husband was out of the house.

Even off the Gabapentin for over a month I still have myoclonic seizures (but milder, perhaps?). And the reason I was taking the Gabapentin was for the severe pain and discomfort of my Small Fiber Neuropathy (SFN).

I refused to start a new medication for the SFN until I was certain that the seizures weren't gone. I started a new mediation, Depakote, for my seizures and Depakote also reduces the pain of my neuropathy. Not completely, but I think I'll put up with a bit of discomfort, rather than increase the dosage, as I did with the Gabapentin.

Since starting Depakote two days ago, I still have had one tiny mild positive seizure in my left arm today...not scary like the negative seizures when I fall.

As I mentioned, I have had three EEGs and one overnight EEG sleep study. There is no detectable seizure activity in my brain. I have had MRI's of almost every part of my anatomy for one reason or another, and I have been tested for every genetic disease and other causes of seizures. When everything is ruled out I'm left with Myoclonus of Aging (I'm 74 and the seizures started seriously this year.

I also take other medications which require monitoring of my liver function (80 mg Atorvastatin for severe Coronary Artery Disease) and see many specialist.
THANK YOU SO MUCH for taking time to answer me.

I know almost no one with conditions like mine. I have a Primary Immune Deficiency Disorder and received IVIG every 4 weeks. In addition to being deficient, my Immune System actually attacks organs/system in my body (lungs, eyes, mouth, bladder, large nerves in my legs, small nerves, ears) so my immune system doesn't protect me, it attacks me.

Fortunately with IVIG every four weeks, I no longer get infections. Before I had those, I was sick all of the time. So I could that among my blessings.

I got braces last year, for my legs, and was delighted that they helped me walk with so much less effort, THEN the myoclonus started and I was afraid to walk without my walker. And even with the walker when I had a negative seizure, I let go of the walker and fell to the floor. I even BROKE a wheel on the walker.

Just as I was tapering the Gabapentin, the severe sciatica started in June, so I had to resume the Gabapentin for that pain, wait for the surgery in October. Thank goodness it worked perfectly.

So I may come out of this year in better shape than ever.

Hugs, ElaineD