Hi, My name is Cassie. I'm new to this community. I have a new neurologist who thinks I might have simple partials but is not sure and does not want to jump to conclusions. I went to see him because of longterm left-sided pain in my leg and arm with minor weakness previously attributed to a presumed blood clot during pregnancy and migraines that recently have gotten to be every day. Every day around 2 p.m. my head starts to hurt and keeps hurting until I fall asleep. I have tried abortives, OTC painkillers, percocet, topomax, even botox injections. Nothing helped. Pain pain pain. I had accepted the left-sided pain was my "new" baseline and asked him to just focus on the headaches. He said let's try Zonegran. Within days of being on just 100 mg, the headaches stopped. Then the left-sided arm and leg pain stopped. Even left-sided TMJ symptoms stopped that had long since preceded my son's birth by 10 years or so. Since the headaches stopped, I have continued on the Zonegran, but clearly feel what I believe are obvious simple textbook partial seizures. I feel a nervous feeling in my stomach, a rising feeling, a tingling/burning in my scalp, and as it dissipates an overwhelming tiredness, but all in just a moment - I think 30 seconds or so.
I had an EEG since starting the meds and thought I had a spell during the EEG when they did the hyperventilation. I asked the Dr. specifically what did you see after the hyperventilation. He said - "It was weird, you had left temporal lobe slowing, but no spike." He wants a 72 hour in home test, which is fine. MRI was fine.
My questions:
1. Has anyone had this kind of pain associated with untreated seizure activity before they were diagnosed? Everything on the left, headaches, arm, leg, jaw, back, all left-and quite severe some days.
2. Is it possible to just miss the spike on the EEG and only catch the slowing?
3. Since I did live with all that pain for so long - I feel free - even cured. Even though these spells (possible seizures) are frequent - Do I need to go through the work of more tests and meds changes trying to figure out specifics? Or do simple partials progress?
I look forward to hearing from you all. I've ready many of your posts and hope to get to many of you soon.
Thanks,
Cassie
I had an EEG since starting the meds and thought I had a spell during the EEG when they did the hyperventilation. I asked the Dr. specifically what did you see after the hyperventilation. He said - "It was weird, you had left temporal lobe slowing, but no spike." He wants a 72 hour in home test, which is fine. MRI was fine.
My questions:
1. Has anyone had this kind of pain associated with untreated seizure activity before they were diagnosed? Everything on the left, headaches, arm, leg, jaw, back, all left-and quite severe some days.
2. Is it possible to just miss the spike on the EEG and only catch the slowing?
3. Since I did live with all that pain for so long - I feel free - even cured. Even though these spells (possible seizures) are frequent - Do I need to go through the work of more tests and meds changes trying to figure out specifics? Or do simple partials progress?
I look forward to hearing from you all. I've ready many of your posts and hope to get to many of you soon.
Thanks,
Cassie