Successful Depakote weaning

@shivb
Let me say...I am not a Doctor, for sure...I could have saved a fortune.

I'm 82 and have been seizure free for over 45 years. I will give you scan information because I don't want you to harm yourself and hope you are seeing a good neurologist. When I was in my 30s through my 50s I was on Depakote but developed tremors that were pretty extreme. I saw a neurologist at the University of Chicago who did wean me off Depakote entirely in about six months ( he substituted another milder med)...BUT, only a good! one can evaluate you and tell you how fast. I went through this change and still did not have a seizure.
I cannot emphasize enough how important it is to do this under the direction of someone you can really trust. At the time I did it, I was having check-ups by my local neurologist---who never said anything---it was a surgeon who suggested the gentleman in Chicago. Good Luck!!💞

Hello,

My son is on Depakote, has been for 14 years. It works for him (knock on wood) but we are worried about the long term effects. If it hadn't been for the tremors do you think you would have stayed with that drug.

Is there anyone out there who has been on Depakote for a long time?

thanks!
Trish

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?

Trish

Hello @shivb
I have been on Depakote for about fifty years. It started when I was about 12 and I am now 62. It has increased over this period and numerous medications, Mysoline, Tegretol, Gabapentin, Sabril to name a few, and many others have been added because of my iatrogenic seizures. Since Depakote has been a good drug and because of my seizures, of course, I have been on increased doses of Depakote.

I was on a regimen of 300mg of Lamictal and 1,500mg of Depakote. The side effects of Depakote were so great that the neurologist decreased the Depakote to 500mg DR in the morning and 500mg ER at night. There was no change in seizure frequency when I stopped the 500mg DR. I now take 500 mg ER at night only in addition to 150 mg Lamictal bid and 400mg Zonisamide at night. It is the addition of Zonisamide that has brought me to a point where my seizures are well controlled. One has not occurred in over a year.

I am not totally weaned off of it but this is an experience of how I have been partially weaned off of Depakote.

@lsittl

Thank you for sharing your experience. And good to read your are doing well. Can you please share you experience on-

What was the dose of Depakote when you weaned off over 6 months? Was it ER/DM? Was it lesser than 500 mg? I am particularly looking for weaning off with this medicine and with what dosage?

What is the milder med now?

PS: I will be of course working with my Dr. but so far, I have found that once when Dr. starts on this med, they don't have enough information on the weaning process.

@tlb101175
Hello there, Trish,
First, let me apologize for the way I framed my sentence, "was in my 30s through my 50s I was on Depakote but developed tremors that were pretty extreme." That sounds like I believed the Depakote caused the tremors, and that is not the case....it is a possible side effect of Depakote, but I also had an essential tremor (I still have) in my chin; and I was almost 70 PLUS, reading your concern between the lines...I researched my medical records for my age of that change, and it was actually 2006, which made me 66 years old!! not 50. So, I was on it at least 35+ years.
As I started to respond to you, I thought I better research my dates. Yes, I would have stayed on it if I did not have additional issues. It kept me seizure free and I know how precious that peace of mind and security is.
Forgive me if I caused you any anxiety. I've walked this walk, so you have my heart.💞

@tlb101175
Hi Trish,
I just saw this...It was never recommended that I take any supplements or have a bone scan. The only thing it seems I had to do was have regular bloodwork to check liver enzymes. That was then...check with his neurologist; it may be different now.
💞

@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...
💞💞

Thank you, and are you:) He just went to a new neuro. and got nowhere. Now waiting another 6 months to see an epileptologist.

Trish

@shivb
Sorry, I try to be faithful with my responses...but somehow, I missed this.
My brain has been taking short vacations in the memory department...so this is my best guess....I think I was taking 1000 or 1500 a day. I don't recall if they were DR or ER. At the time, I was also taking 1mg of clonazepam, which I had been taking since I was 15 years old. No neurologist has wanted to try to take me off that since I've been on it for so long.

He gave me a reduction schedule and put me on Primidone....funny, that is Mysoline and the first med I was on in 1955, Mysoline and phenobarbitol...the old days.

I remained on just Primidone and Clonazepam until I got GCA in 2019 and was given mega-doses of prednisone which affected the anit-convulsants. Then I went on Keppra, 2000 mg per day. That is where I am right now and it works for me.

I knew my family would be so worried if I had a seizure that they might think I needed assisted living...so as long as I'm seizure-free, I'm fine. As our bodies change, our chemistry changes.

I'm concerned when you said you felt your doctor didn't know enough about the weaning process...he certainly should. A neurologist over-medicated me in 1985 on 24 Tegretol a day!! I was such a mess I went to the Mayo Clinic in Rochester, and they weaned me off --- I got another neurologist. My best💞