Successful Depakote weaning

Posted by shivb @shivb, Jun 3, 2023

Hello,
I am looking for patients who have been successfully weaned off Depokote. Please share your experiences. Thank you!

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

@jakedduck1

@tlb101175
I agree with Chris @santosha
Last I checked Epidiolex cost around $32,000 a year however there are Mayo members who are getting it at lower costs through programs from the manufacturer. Although copays vary, one person pays $25.00 a month. This medication is FDA approved for 2 Epilepsy syndromes, Lennox-Gastaut syndrome and Dravet syndrome.
But I’ve heard some physicians give it for other Epilepsy conditions.
There is someone here with Lennox-Gastaut syndrome and tried Epidiolex but it wasn’t as effective as non prescription CBD products.
If your doctor orders it ask if it’s a full spectrum product.
Like medications the effectiveness of CBD varies.
Take care,
Jake

Jump to this post

I agree with Jake, @jakedduck1
The effectiveness of CBD can vary as conventional medications do. One has to try CBD to see the results he or she gets with it.
Chris/Santosha

REPLY

Hi my mom has been on Depakote for 12 days for migraine. She is so drugged up she sleeps all the time her speech is slow and she can't remember what she was saying. She says she feels like a zombie. She's on 250mg mornings and night. How do we taper. I've been calling the doctor but always a voice mail.
Any help would help!

REPLY

@bpq
If your mom continues to take Depakote the side effects may become milder or even stop after a few weeks or months. Obviously your doctor knows best (or should) but if your physician refuses to call you perhaps talk to a pharmacist. If you can go to the doctor’s office it will be more difficult for them to ignore you.
If it were me and the side effects were intolerable I’d only take it once a day.
Are you taking the delayed or extended-release version?
Jake

REPLY
@jakedduck1

@bpq
If your mom continues to take Depakote the side effects may become milder or even stop after a few weeks or months. Obviously your doctor knows best (or should) but if your physician refuses to call you perhaps talk to a pharmacist. If you can go to the doctor’s office it will be more difficult for them to ignore you.
If it were me and the side effects were intolerable I’d only take it once a day.
Are you taking the delayed or extended-release version?
Jake

Jump to this post

She's on extended release. An update. The doctor finally called back and cut it down to 125mg twice a day. It's crazy though as soon as she takes it, it seems like she's on a drunk. I'll suggest maybe she only take it at night to sleep.
thank you Jake!

REPLY

@bpq
Great that the doctor called and lowered her dose. You mentioned “as soon as she takes it, it seems like she's on a drunk”
What symptoms is she having to feel this way? Depakote can cause GI problems, dizziness, drowsiness, balance and memory issues.
Is your mom sensitive to most or all meds?
Although I wouldn't expect it, I wonder if your mom’s blood level of Depakote could be in the toxic range. Did the doctor say when she needs to have her level checked and other blood tests done?
Also get your mom's vitamin D and calcium checked as Depakote can affect those levels.
Take care,
Jake

REPLY
@grammy82

@tlb101175

PS Trish,
I know low Vitamin D can have multiple effects on our systems....that sure wouldn't hurt. As for me...too long ago, can't recall. my best....he is so brave and so are you...
💞💞

Jump to this post

I hope you are both well! But as an NP I urge your son not to start on Vitamin D without his providers approval. Vitamin D is a lipophilic medication that is metabolized by the liver as is Depakote. I do not know his full health history or his blood levels but adding vitamin D may negatively effect is liver as well as change the depakote levels in his body. I know it seems like adding a vitamin “can’t hurt” but in truth many can. Gods luck to you!

REPLY
@alf12

I hope you are both well! But as an NP I urge your son not to start on Vitamin D without his providers approval. Vitamin D is a lipophilic medication that is metabolized by the liver as is Depakote. I do not know his full health history or his blood levels but adding vitamin D may negatively effect is liver as well as change the depakote levels in his body. I know it seems like adding a vitamin “can’t hurt” but in truth many can. Gods luck to you!

Jump to this post

I agree with @alf12, do have all validated with your doctor.
If possible, get sources of Vitamin D naturally, by sitting early in the morning outside to take some sun (without a sun protector). But I know that it is not always possible, depending on which state of the United States you live in. I have lived in the Netherlands and other North European countries for some time, and I missed so much the sun, especially in The Netherlands where the sky is mostly grey.
All the best!
Chris (Santosha)

REPLY
Please sign in or register to post a reply.