@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
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
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!
@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
@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
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!
@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
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...
💞💞
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!
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!
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)
also were you taking any supplements while on Depakote. No one has ever suggested vitamin d or calcium to him and he has never had a bone density test. He is now 22?
Hi Trish,
My son is 25 and has been on Depakote since he was about 9 years old. We have tried to wean him a couple of times and he would have a seizure, so we had him continue on the med. In 2023 he had a 14 cm Adenoma in his liver which was removed along with half his liver. The surgeon said his liver was extremely fatty too. There was also a tiny portion of cancer in this tumor. My son is also on other medications as well, but the surgeon said he had another autistic person with this same type of tumor as well. I’m assuming this tumor developed from my son being on medications since he was a child, one of them being Depakote. We are seeing a new neurologist in October and we are asking about weaning him from Depakote.
Kathy
Hi Trish,
My son is 25 and has been on Depakote since he was about 9 years old. We have tried to wean him a couple of times and he would have a seizure, so we had him continue on the med. In 2023 he had a 14 cm Adenoma in his liver which was removed along with half his liver. The surgeon said his liver was extremely fatty too. There was also a tiny portion of cancer in this tumor. My son is also on other medications as well, but the surgeon said he had another autistic person with this same type of tumor as well. I’m assuming this tumor developed from my son being on medications since he was a child, one of them being Depakote. We are seeing a new neurologist in October and we are asking about weaning him from Depakote.
Kathy
My son too has been on Depakote since he was around 10, he is now 23 and I worry about what it is doing to him internally as well. I guess Depakote was the go to drug back then. It has worked for him all these years(knock on wood) that we are afraid to switch. I've been looking into lamictal/lamotrigine it seems to be one of the closest newer drugs to Depakote. I worry about his future and possibly wanting to have kids some day. I have been reading that they are finding that depakote can cause infertility in men. I always ask his epileptologist if there are still people taking this drug for over 20 years and he always reassures me yes, but I'm not so sure because nobody ever talks about Depakote on this site that I am aware of.
Sorry if I got off track of what this original post was about but its been awhile and I can't seem to follow what everyone was talking about.
My son too has been on Depakote since he was around 10, he is now 23 and I worry about what it is doing to him internally as well. I guess Depakote was the go to drug back then. It has worked for him all these years(knock on wood) that we are afraid to switch. I've been looking into lamictal/lamotrigine it seems to be one of the closest newer drugs to Depakote. I worry about his future and possibly wanting to have kids some day. I have been reading that they are finding that depakote can cause infertility in men. I always ask his epileptologist if there are still people taking this drug for over 20 years and he always reassures me yes, but I'm not so sure because nobody ever talks about Depakote on this site that I am aware of.
Sorry if I got off track of what this original post was about but its been awhile and I can't seem to follow what everyone was talking about.
My son (18) has only been epileptic for 14 mos but immediately they put him on Keppra which did absolutely nothing for him. After a stay in the EMU they took him off Keppra and put him on Depakote. Depakote works well for him but he had excessive weight gain and so he asked his neurologist to switch him. He is now on both Depakote and lamictal and he is much happier with that. With being lower doses of each med there are less negative side affects and the transition went much better than we anticipated.
He is now in a college dorm and though we worry about him taking care of his medical needs, so far all is well.
Tracey
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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
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Hug
1 ReactionHi 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!
-
Like -
Helpful -
Hug
1 Reaction@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
-
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Helpful -
Hug
3 ReactionsShe'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!
-
Like -
Helpful -
Hug
1 Reaction@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
-
Like -
Helpful -
Hug
2 ReactionsI 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!
-
Like -
Helpful -
Hug
2 ReactionsI 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)
-
Like -
Helpful -
Hug
1 ReactionHi Trish,
My son is 25 and has been on Depakote since he was about 9 years old. We have tried to wean him a couple of times and he would have a seizure, so we had him continue on the med. In 2023 he had a 14 cm Adenoma in his liver which was removed along with half his liver. The surgeon said his liver was extremely fatty too. There was also a tiny portion of cancer in this tumor. My son is also on other medications as well, but the surgeon said he had another autistic person with this same type of tumor as well. I’m assuming this tumor developed from my son being on medications since he was a child, one of them being Depakote. We are seeing a new neurologist in October and we are asking about weaning him from Depakote.
Kathy
-
Like -
Helpful -
Hug
1 ReactionHello,
My son too has been on Depakote since he was around 10, he is now 23 and I worry about what it is doing to him internally as well. I guess Depakote was the go to drug back then. It has worked for him all these years(knock on wood) that we are afraid to switch. I've been looking into lamictal/lamotrigine it seems to be one of the closest newer drugs to Depakote. I worry about his future and possibly wanting to have kids some day. I have been reading that they are finding that depakote can cause infertility in men. I always ask his epileptologist if there are still people taking this drug for over 20 years and he always reassures me yes, but I'm not so sure because nobody ever talks about Depakote on this site that I am aware of.
Sorry if I got off track of what this original post was about but its been awhile and I can't seem to follow what everyone was talking about.
I appreciate you reaching out!
Trish
-
Like -
Helpful -
Hug
1 ReactionMy son (18) has only been epileptic for 14 mos but immediately they put him on Keppra which did absolutely nothing for him. After a stay in the EMU they took him off Keppra and put him on Depakote. Depakote works well for him but he had excessive weight gain and so he asked his neurologist to switch him. He is now on both Depakote and lamictal and he is much happier with that. With being lower doses of each med there are less negative side affects and the transition went much better than we anticipated.
He is now in a college dorm and though we worry about him taking care of his medical needs, so far all is well.
Tracey