A picture is worth a thousand seizures
Today, we visited with Dr. White and got the results of Stacy’s QEEG (brain mapping). As Dr. White put it, “not good!”. Stacy was exhibiting way too much delta and theta activity and not enough alpha and beta. The theta activity is centered above the thalamus. Dr. White said she really didn’t understand how Stacy was even functioning because her brain activity was so far out of whack.
The good news is that Stacy has not exhibited any seizure activity since her status cluster that sent her to the hospital at the beginning of the month.
She started regular neurofeedback sessions a couple of weeks ago to hopefully normalize her brain wave activity. She has upped her Dilantin intake to alternating doses of 300mg/400mg daily and it appears to have controlled the infrequent jerks/partial seizures that she tended to have just before her period. She started her period today and we are hopeful that she will avoid any more TC clusters (the last few occurred around her period).
September 27th, 2007 at 12:00 am
Stacy,
I know you and Bernard are leaving no stone unturned, but reading your log rings a few bells. I hope it is ok for me to jump in to do some brain storming [no pun intended!].
Have you looked at the nutrient depletions from dilanten and considered whether these may also lower your seizure threshold? This does happen and I’ve come across it in my searching. Vitamin D, B1, and folate are three that come to mind right off. The D deficiency will result because the drug speeds up the liver’s metablism of vitamin D.
http://www.qualitycounts.com/drugs/dilantin_phenytoin.html
The deficiency is linked to poor absorption of minerals, which can also lower the seizure threshold.
Folate deficiency will lead to an increase in homocysteine levels which may also lower your seizure threshold.
B1 is the other one I have seen a medical study about, the deficiency linked to dilantin use, which may again lower the seizure threshold.
vitamins for epilepsy
I had aspiration pneumonia several times from AED toxicity. The last time is what put me to the front of the line for brain surgery, which failed. I had coughed up so much stuff in my lungs the first x-rays made them think I had a tumor over my heart, three days in the ER to sort it out!
I hope you will see some improvement with the neurofeedback.
Zoe
September 27th, 2007 at 8:23 am
Hi Zoe.
Stacy’s doc takes periodic blood tests to monitor her vitamin/mineral levels. She also takes a multi-vitamin/mineral supplement in addition to a few specific supplements.
Thanks for your comments.