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Coping with siezures

Posts: 1
Joined: Apr 2002

I have been brain cancer free coming up on two years, but am going through siezure episodes lately. The tumor was on the right side and the effects of the siezures start on my left side with feelings of numbness and sometimes going to full blown grand mal. My oncologist has me on Carbatrol now up to 800mg a day.
This is a more frustrating situation than dealing with the tumor and its treatment.
I feel like a zombie most of the day. Every little twinge of "fuzziness" makes me think "here we go again, where's the wooden spoon to chomp on".
I used to deal with cancer through humor - funny T-shirts. I have lost my sense of humor, I have lost control of the situation.
Don't know what else to say, thanks for listening.


Posts: 58
Joined: Jun 2001

Hi there Tampatom,
Siezures can be a scary thing. I know i was told i may start having them after my surgury so they put me on dialantin for a year following. Ive been very lucky i have not had one. I hope you and your doc can find a workable solution and medication for this. I had a cousin that had more than 20 a day and they finally did some type of surgury to help. Its really helped along with medication. I dont know what the type of the surgury was called . But theres help out there somewhere. I hope you can get it.


Posts: 7
Joined: Nov 2001

My husband had a brain tumor in Dec. 1999, and if it hadn't been for him having a seizure, we would not have found it so quickly. The squad took him to the ER right away, and they found the tumor.
Anyway, he took dilantin for awhile, but had troube with his blood levels being too high resulting in a problem with his balance. So they prescribed Lamictal, 100 mlg. twice a day. He has not had a siezure since, and that was 3 yrs. ago. (Oh,he did have one when he had surgery in Jan., a very minor one, but the nurses/doctors did not give him the medication the evening of the surgery, they did 1st thing the next morning when I got there and saw his bed padded and asked what happened) Good Luck, God Bless.

Posts: 1
Joined: Sep 2002

I, my first and only was an gran mal siezure was on June 20. I have GBMIV. The PZA did not work. Start this monday with rads and temodor. Sorry cant talk but I gettin better with more DEX.
There times I just demind my minor siezures to STOP.......I even whack my ear at
it done. Stops within 5 seconds. Thats me....not everbody.



Posts: 5
Joined: Oct 2002

My 16yr old daughter with GBM, operated on the 16th September 02, got a seizure on the 23rd of September. They than pump her up with DEX (I beleive, If interested I will look at my notes) to control the seizures. But it caused black outs. They figured she was alergice and changed it to dilant, now doing much better. Did you do any research on Dr. Burzynski-Antineoplastons, or on Santa Monica from New Mexico? Please write to me at eneldo@galleria.ca, thank-you.

Posts: 1
Joined: May 2003

Hi: I have seizures every single day, sometimes I fall down and hurt myself, it is as if I go into some kind of trace and cannot help myself and I just topple over. I have a right frontal Oliogodendroglioma inoperable, and was diagnosed in November of 1998, I have several MRIs every year, and was fine until this last report, it shows that the tumor is now taking up more of the contrast, whatever that means? My doctor told me that it means the tumor is now on the move. I am really scared. At my next MRI if the tumor is getting worse, I must have Radiation therapy and I know very little about that.
I am really terrified that even after having Radiation the cancer will still be there.
I am 55 years old and figure I am just too young to die yet, there is too much left for me to do.
I was given 8-10 years back in 1998 so I was surprised when this last report came back bad.
If you have had Radiation therapy can you please tell me if it worked for you and do you still have the tumor.

HappyChappy's picture
Posts: 2
Joined: Nov 2003

Hi I now have my 3rd braintumor all on my right hand side I was diagnosed with Epilepsy when I was 10 the same time I was diagnosed with my 1st tumor. I know what u mean about seizures playing up as I just came out of hospital 2days ago 28th Nov. I had a huge seizurs that left with with no movement at all from my neck down. I was so scared. All you have to do is keep positive even though I know it is hard sometimes. For youe seizures ask your doc about Lamictal and Neurontin. I am on the highest dosages of them but have very serious Epilepsy they have done the best for me. Well have a good day from HappyChappy

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