1. < Epilepsy & Seizures

Doctors comments on side effects of medication

Posted by lsittll @lsittll, Mar 4, 2023

My neurologist told me that Depakote is in the same category of medications that that Dilantin is in. He said it would affect the bones. I said I already have osteoporosis. He said but if you get a hip fracture. (I can get one anyway and Depakote will not be the cause of it).

He said Zonisamide causes kidney stones. There is nothing unusual about that comment it is just that I do not like hearing it because it is such a good drug for me.

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Leonard | @jakedduck1 | Mar 5, 2023

@lsittll
I just saw your message for some reason I’m not getting emails anymore.
Sure, it can be hard on the bones I believe because of the loss of vitamin D. Especially the old anticonvulsants like Dilantin, Phenobarbital, Depakote, Mysoline, Carbamazepine. I have taken at least 2 of these drugs daily for the last 57 years and at least 4, maybe 5 some of the time. What does he say is causing the bone density loss? did you ask him if the bone mass loss could be stopped or slowed?
as far as kidney stones are concerned, I believe it’s only like one or 2% of the people taking that medication. I’ve never taken it and I’ve had 8 kidney stones. you should ask him what the perfect anticonvulsant is. I’d be curious to know. The only time I ever broke a bone, which was my wrist, I didn’t have osteoporosis or osteopenia.
Take care,
Jake

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3 replies
lsittll | @lsittll | Mar 5, 2023
In reply to @jakedduck1 "@lsittll I just saw your message for some reason I’m not getting emails anymore. Sure, it..." + (show)
@jakedduck1

@lsittll
I just saw your message for some reason I’m not getting emails anymore.
Sure, it can be hard on the bones I believe because of the loss of vitamin D. Especially the old anticonvulsants like Dilantin, Phenobarbital, Depakote, Mysoline, Carbamazepine. I have taken at least 2 of these drugs daily for the last 57 years and at least 4, maybe 5 some of the time. What does he say is causing the bone density loss? did you ask him if the bone mass loss could be stopped or slowed?
as far as kidney stones are concerned, I believe it’s only like one or 2% of the people taking that medication. I’ve never taken it and I’ve had 8 kidney stones. you should ask him what the perfect anticonvulsant is. I’d be curious to know. The only time I ever broke a bone, which was my wrist, I didn’t have osteoporosis or osteopenia.
Take care,
Jake

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@jakedduck1

Hello!

I did not ask him if the bone loss could be stopped because I already know it can with Calcium and Vitamin D supplements. I already take both of them because of my osteopenia. I have decreased the degree of osteoporosis to a lower level of osteopenia and taken Depakote during this time. It is just funny that he thought a hip fracture would only be because of the Depakote. The tone of his voice really added to the way it was funny.

Take care,
Laurie

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NJ Ed | @njed | Mar 6, 2023
In reply to @jakedduck1 "@lsittll I just saw your message for some reason I’m not getting emails anymore. Sure, it..." + (show)
@jakedduck1

@lsittll
I just saw your message for some reason I’m not getting emails anymore.
Sure, it can be hard on the bones I believe because of the loss of vitamin D. Especially the old anticonvulsants like Dilantin, Phenobarbital, Depakote, Mysoline, Carbamazepine. I have taken at least 2 of these drugs daily for the last 57 years and at least 4, maybe 5 some of the time. What does he say is causing the bone density loss? did you ask him if the bone mass loss could be stopped or slowed?
as far as kidney stones are concerned, I believe it’s only like one or 2% of the people taking that medication. I’ve never taken it and I’ve had 8 kidney stones. you should ask him what the perfect anticonvulsant is. I’d be curious to know. The only time I ever broke a bone, which was my wrist, I didn’t have osteoporosis or osteopenia.
Take care,
Jake

Jump to this post

Like yourself, I've been on Dilantin for many years, 52 to be exact and my primary doc does check bone density about every 2 years. I also took phenobarbital for the first 20 years with Dilantin after getting diagnosed. Likely, when neuro docs say this can be a side effect or that can be a side effect, this means possible but no guarantees. I was also warned about side effects of long term use of Dilantin including gum growth which happened to me about 18 years ago. That procedure was no picnic. Several neuro docs have assured me that long term use of Dilantin can't cause balance issues or neuropathy. Even after a half century??

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1 reply
Leonard | @jakedduck1 | Mar 6, 2023
In reply to @njed "Like yourself, I've been on Dilantin for many years, 52 to be exact and my primary..." + (show)
@njed

Like yourself, I've been on Dilantin for many years, 52 to be exact and my primary doc does check bone density about every 2 years. I also took phenobarbital for the first 20 years with Dilantin after getting diagnosed. Likely, when neuro docs say this can be a side effect or that can be a side effect, this means possible but no guarantees. I was also warned about side effects of long term use of Dilantin including gum growth which happened to me about 18 years ago. That procedure was no picnic. Several neuro docs have assured me that long term use of Dilantin can't cause balance issues or neuropathy. Even after a half century??

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@njed
I respectfully disagree with your Neurologist. I believe Dilantin and Phenobarbital were the cause of my Neuropathy and had a direct influence on my balance and coordination and also causing my Ataxia.
I took Dilantin for probably around 30 years until my Dilantin level became very unstable and I had no choice but to discontinue it. I'm sure the Anticonvulsants along with uncontrolled seizures and months of induced comas added to my problems.
I'm sure grateful my Gingival Hyperplasia was never as serious as yours.
Take care Ed,
Jake

REPLY
NJ Ed | @njed | Mar 6, 2023

@jakedduck1 - Jake, so do I disagree with my neurologist. One neuro doc in 2017 said...hmmm? That is the closest I ever got to a possibility. Well, it wasn't a no. I know they don't want me to stop taking my 600 mg daily because it has kept me seizure free for years. So, typically they go oh no...but to me, there is a connection between the seizures and other neurological issues I've experienced and still do. I know Dilantin has been around for about 70 years. Very sorry to hear what you went through with uncontrolled seizures and comas. Sounds like you went thru a lot.
Stay well,
Ed

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tjbuch61 | @tjbuch61 | Apr 8, 2023
In reply to @jakedduck1 "@lsittll I just saw your message for some reason I’m not getting emails anymore. Sure, it..." + (show)
@jakedduck1

@lsittll
I just saw your message for some reason I’m not getting emails anymore.
Sure, it can be hard on the bones I believe because of the loss of vitamin D. Especially the old anticonvulsants like Dilantin, Phenobarbital, Depakote, Mysoline, Carbamazepine. I have taken at least 2 of these drugs daily for the last 57 years and at least 4, maybe 5 some of the time. What does he say is causing the bone density loss? did you ask him if the bone mass loss could be stopped or slowed?
as far as kidney stones are concerned, I believe it’s only like one or 2% of the people taking that medication. I’ve never taken it and I’ve had 8 kidney stones. you should ask him what the perfect anticonvulsant is. I’d be curious to know. The only time I ever broke a bone, which was my wrist, I didn’t have osteoporosis or osteopenia.
Take care,
Jake

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