John's 1 year anniversary of his epilepsy diagnosis came and went without any fanfare. His seizures are obviously worse now than they were a year ago. Cognitively, I think he's stayed right at about an 18month level. Of course we never thought we'd still be dealing with this a year later, but at the same time I know things could get a lot worse.
Stats for the year:
- over 17,000 seizures that we've seen. Half just head drops, and half full on drops.
- 1 Grand Mal seizure
- 6 failed drugs: Ativan, Depakote/Depakene, Tranxene, Topamax, Felbatol, Lamictal. (plus a trial of Pyridoxine).
- 9 months of the ketogenic diet.
- VNS surgery
- 2 neurologists
- 3 visits to the ER
- 3 visits to the urgent care clinic
- 1 ambulance ride
- Tests: 3 EEGs (1 short, and 2 long), MRI, CT Scan, Spinal tap, over a dozen blood draws
- Other therapies: homeopathy, chiropractic, naturopath.
My name is Maree Sneed and i would like to show you my personal experience with Topamax.
ReplyDeleteI am 27 years old. Have been on Topamax for 3 months now. Had severe debilitating migraines at least 2x a week. Had to stay in bed. I have a 7 year old. I was missing out on everything. Now I can get out of bed and get on with my day. I am down to maybe 1 migraine a month and it is functional not crippling.
I have experienced some of these side effects -
weight loss, no appetite, severe mood swings, emotional, yucky taste to cola, thirsty, thirsty, thirsty, extreme fatique
I hope this information will be useful to others,
Maree Sneed