It has definitely been a difficult couple of months. From the moment I found out I was pregnant I knew it wouldn't be easy. I knew I would have to come off the Topamax which was controlling my epilepsy wonderfully for years.
I was diagnosed with epilepsy at age 14 & had been on pretty much every anti seizure medication out there & only Topamax really worked.
When I had issues with Lamitcal while I was pregnant my neurologist took me off any medication completely. I was fine until the last couple weeks of my pregnancy, then I started having seizures & it hasn't ended.
I keep having break through seizures probably due to the fact that I'm sleep deprived & that I'm changing meds (going from the Keppra they put me on in the hospital back to Topamax).
I really hope to be seizure free soon because I love my son & I want to be able to fully care for him, which I can't now. It kills me because I can't breast feed & I was looking forward to it & now my mom has to watch my son at night so I can get enough sleep.
But one day I will be seizure free!!!
Jul 5, '14
by tokmom, BSN
Yes, that is so true and I really try to educate people that seizures don't always involve loss of bowel/bladder and tonic/clonic
He was admitted with the same jumping conditions and the continuous eeg showed abnormal brainwaves that were very slow, despite the fact his body was ramped up. His own neuro was on vacation, so we were stuck with the on-call. She took one look at husband and deemed him a faker and out for some monetary reward. Sadly that followed us around for a couple of years and shut the door on some of the best ones in Seattle. Finally a neuro psych did some testing and deemed him with a sz disorder, backing his neuro's assessment.
Every day I pray that the new medication will work, but when I see the twitching starting and the rough, gravel voice I cringe. the last time he jumped for 16 hours and I went to work (left an adult child home with him) on 90 minutes of sleep because the noise was awful.
How do you guys function and stay positive? I wish he would be tested for sleep apnea, but he is in total denial.
Last edit by tokmom on Jul 5, '14