I am new here. Today my new neurologist said I am having mycolonic seizures/events based on when the events happen, hubby's description of the events, and my normal 24-hr EEG on a day without an event. She is starting me on klonopin and asked me to discontinue the elavil. I am unsure what to think. I am confused and not sure what this will mean for my life.
The worst part is that what led to the dx of this type of siezure are episodes of sudden and often violent jerks that are very fast but last 5-10 minutes while I am asleep. The episodes only happen when I have a headache (usually migraine) yet for years I have had day time muscle spasms that are painful and sometimes make the muscles seem to "jump" under my skin- it often will make a finger or toe (even my hand or foot) twitch no matter how hard I fight them. I practice a type of biofeedback but it doesn't help with the spasms. I just realized it may all be connected. Worse none of this happened until 1999/2000 and it didn't get bad until 1994 after the plaquenil was pulled. It has been progressively worse and upsets my husband very much- he is so scared and it hurts me to see him scared of what is happening to me.
I also have systematic lupus which may be an underlying cause of what is happening. I am basically left to my own devises to figure out what this will mean for me. I could cry.
I was told to keep a headache journal that it would help her decide if the headaches and seizures are connected.
THANKS she is having me do the headache journal but I added an other space to it for anything odd.