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ksplat Super Moderator
Joined: 26 Apr 2007 Posts: 563 Location: Brisbane, Australia
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Posted: Wed Dec 05, 2007 5:36 am Post subject: I have a question about Dilantin too!!! |
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Hi all
Just wanting some info for my own self on Dilantin.
As you all know my Bro was diagnosed with a GBMIV in Feb 07. He has had 2 resections. The 1st in May wasn't too successful & he has been in a wheelchair since then. No movement on his L side from R Frontal lobe tumour on brainstem. The 2nd resection was Ok, no deficits.
He tried radiation early on but it made him very ill & he was having severe seizures & L side disabled. Radiation stopped after 4.5wks. He has been on Temodal most of this time. Currently doing a monthly cycle with 5 days on 23 off Temodal.
This week (Tues) he was doing exercises in his wheelchair on his verandah & was talking to his wife (who was inside the house). He suddenly noticed his mouth was moving but nothing coming out. His wife found him slumped in the wheelchair, he had had a seizure (he hasn't had one of these since May this year). His wife managed to get him onto the bed & he roused enough for her to give him a Valium tablet.
His surgeon was contacted & told him that the routine blood tests done the previous Fri showed his dilantin levels were not right. Dr advised Mark to take an extra dilantin tablet. He started on 4 tabs (don't know the dose?) at diagnosis then when he started seizures in March, dilantin was increased by 1 tab. Now he's taking 5 tabs (since seizure on Tues).
Is Dilantin a by-product of the brain? If so what does it do?
I'm a little concerned as he's been cruising along well since his last resection. He & his wife even managed a vacation to Hawaii for 10 days a couple of weeks ago.
His next MRI is not until 12 Dec.
Can anyone shed more light on this?
I would appreciate any input/info.
Cheers, Aussie Angie. _________________ Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227
"Without Faith We Have Nothing" |
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brainman Site Admin

Joined: 13 Oct 2005 Posts: 4279 Location: Tennessee
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Posted: Wed Dec 05, 2007 6:13 am Post subject: Re: I have a question about Dilantin too!!! |
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Angie, I am extremely sorry that Mark is again having seizures. I was on Dilatin (Phenytoin) for 14 years without any complications. I too took 4 a day... one in the morning, one late afternoon, and 2 at bedtime. Dilantin alone did not work for me even though the level of it in my blood was above the top therapeutic range. I had to take Phenobarbital on top of the Dilantin.
Dilatin is not a by-product of the brain. How it works I do not think anyone knows for sure. My impression of a seizure is that it is like an electrical short circuit. The neurons in the brain start firing too fast and out of control. Somehow, anti-seizure medications stop that short circuit in the brain. More than that, I do not know. And even this description may not be exactly right. I know it slowed my brain down in general .
You KNOW that you and Mark and his family and in my prayer and have been since you joined. _________________ Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/ |
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mp New User
Joined: 05 Oct 2007 Posts: 6 Location: KY
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Posted: Wed Dec 05, 2007 2:46 pm Post subject: Re: I have a question about Dilantin too!!! |
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| My husband was on dilantin until he started his temador. Our NO said he wanted to change it to KEPPRA , because it worked better with temador. We started this in June and are still on it, with no problems. |
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brainman Site Admin

Joined: 13 Oct 2005 Posts: 4279 Location: Tennessee
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Posted: Wed Dec 05, 2007 10:09 pm Post subject: Re: I have a question about Dilantin too!!! |
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From what I read about Dilantin it works best when the seizures that start in the motor control areas of the brain. I am now on Keppra rather than Dilantin. It is more expensive but does not make me as tired. I am also on Lamictal which not only helps with seizures but with my mood swings. _________________ Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/ |
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