Hello,
I've been being treated with neurofeedback for about 2 months now, and the Dr. who is administering it is talking about possibly ending the treatment or at least taking a break to see if it is doing anything. I'm not sure exactly how this works so for any who are familiar with my story you can skip the next paragraph.
I am not someone who has dealt with epilepsy my whole life. I think the first time I had a seizure was when I was 18 (1997) but I am not totally sure about that. If it was then I didn't have another one until 2006, when it was most likely because of a brain tumor I found out I had. My neurosurgeon was able to remove the vast majority of the tumor (90% or so). He wanted me to do chemotherapy but since it was an ologoastrocytoma and only 1 or 2 on the scale of seriousness I opted to hold off considering the success rate of chemo for brain tumors wasn't too grate. I was on Dilantin for at least a year (maybe 2) and getting a MRI at least every 6 months. After about 3 years (maybe more) I was off the Dilantin and all was considered to be well.
That is until May this year, when I had my first seizure in about 5 1/2 years. It was a grand mal, and I've had about one about every 7-10 days since then. That is until I started the neurofeedback (nf). The postictal phase was pretty typical before I started the neurofeedback being 15-30 min. I didn't know what day it was and sometimes even forgot who people were. Once I started the neurofeedback the postictal period after the seizure was pretty much not at all. In fact before I was not conscious for the seizures at all before but now I'm pretty much conscious through the whole seizure even the when they are grand mals.
Another positive note is that the intensity of the seizures started to decrees. But on the negative side they have increased in frequency. Since I started the neurofeedback I even had 3 grand mals in one week. So it is tough to say if my body was just adjusting or what.
Any I was wondering if anyone had any success with neurofeedback, or if may I should go to a different place since this Dr.'s specialty seems to be with ADD kids and such and doesn't seem to have much experience with people with seizures?
I've been being treated with neurofeedback for about 2 months now, and the Dr. who is administering it is talking about possibly ending the treatment or at least taking a break to see if it is doing anything. I'm not sure exactly how this works so for any who are familiar with my story you can skip the next paragraph.
I am not someone who has dealt with epilepsy my whole life. I think the first time I had a seizure was when I was 18 (1997) but I am not totally sure about that. If it was then I didn't have another one until 2006, when it was most likely because of a brain tumor I found out I had. My neurosurgeon was able to remove the vast majority of the tumor (90% or so). He wanted me to do chemotherapy but since it was an ologoastrocytoma and only 1 or 2 on the scale of seriousness I opted to hold off considering the success rate of chemo for brain tumors wasn't too grate. I was on Dilantin for at least a year (maybe 2) and getting a MRI at least every 6 months. After about 3 years (maybe more) I was off the Dilantin and all was considered to be well.
That is until May this year, when I had my first seizure in about 5 1/2 years. It was a grand mal, and I've had about one about every 7-10 days since then. That is until I started the neurofeedback (nf). The postictal phase was pretty typical before I started the neurofeedback being 15-30 min. I didn't know what day it was and sometimes even forgot who people were. Once I started the neurofeedback the postictal period after the seizure was pretty much not at all. In fact before I was not conscious for the seizures at all before but now I'm pretty much conscious through the whole seizure even the when they are grand mals.
Another positive note is that the intensity of the seizures started to decrees. But on the negative side they have increased in frequency. Since I started the neurofeedback I even had 3 grand mals in one week. So it is tough to say if my body was just adjusting or what.
Any I was wondering if anyone had any success with neurofeedback, or if may I should go to a different place since this Dr.'s specialty seems to be with ADD kids and such and doesn't seem to have much experience with people with seizures?
. As far as the EEG, I did a QEEG at the nfb place, and the Dr. strongly suggested that my neurologist do an EEG which my neurologist didn't see a point to. I ended up getting a different neurologist because it seemed like I was just another number to him. The other neurologist didn't see a point in the EEG either but was willing to order it. I'm not sure if you guys have ever worked with Kaiser but it can be frustrating to say the least.