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Old 06-01-2005, 09:48 AM
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not able to post reply to Stacy's Diary


Stacy,
I truely understand that you want to be off all Meds and seizure free. But, from the posts that have been put in your Dairy it seems that you need some MORE meds. I know that is not something that you want to hear, but it very well may be the truth. ( it doesn't have to be forever)
You have a much better chance of getting off of med if you get your seizures totally under control first. Seizures have a snowball effect. Once they start rolling they just keep getting bigger and better.
I would suggest that you add something to your Dilantin as well as do the other stuff that you do. Once your seizures are under control for a couple of years then you can try taking some of your meds away.
If you continue to seize the way you are now, they are just going to get worse.
Have you ever tried Lamictal? It is like Dilantin in the aspect that it covers a wide range of seizure types. I liked the drug on a whole, and thought that it had much fewer side effects then Dilantin. My only issue with it was facial pain, and headaches. But, most people do very well with it.
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seizure since age 12, focal resection 1992, VNS 2002 removed 2003.
Lamictal 400mg, Topamax 100mg daily.
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Old 06-01-2005, 10:54 AM
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Thanks Elisa, I'm trying to contact Stacy's doctor right now to discuss possibilities. I'll ask him about Lamictal.

Stacy could not eat anything yesterday - she was too nauseous and puked it up. She did manage to take her Dilantin successfully though.

She slept most of the day yesterday. She had another tonic clonic at 2:32am last night, but fortunately, she only had one.

She did get up and about this morning and eat some breakfast. She's got low energy though and is napping again.

BTW, the diary has a separate login system/database from the forum. I don't know how to merge the two. You need to register for the diary/blog separately from the forum in order to post comments there.
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Old 06-06-2005, 01:31 PM
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well, did you talk to the Doctor and what did he think?
I need to call me doctor today as well. My meds just aren't working for me anymore.
Well, the one med that I know works I can't take since the VNS, so I'm trying to find a new one. Haven't had any luck.
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Old 06-06-2005, 03:29 PM
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Doc upped Stacy's Dilatin from 200mg/day to 300mg/day last week. She is scheduled for a blood test tomorrow. He thinks it is likely that her body has adjusted to the low dosage that she was on. He may bring her up to 400mg/day soon.

The neurofeedback tech said the measurement results showed a lot of improvement, but we still need to follow up with Dr. White to get the details. Stacy missed her weekly session prior to the tonic clonic cluster because I was out of town on business and could not take her to the appointment (and we all forgot to make other arrangements).

She seems to be doing well again. Hopefully she will have some time to post on the forums soon.
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