Depakote?

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salright2baredneck

salright2baredneck

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I know that this med has probably already been discussed somewhere on here before, but I have a hard time reading and concentrating enough to research it on my own. After 3 years on tegratol and uncontrolled seizures, a new doc has decided to switch me cold turkey over to depakote. Before I make the jump I was hoping that someone could give me some clues as to the side effects, good effects, etc. that they experience while taking it. I'm not very trusting of this doc, as he told me when I asked, that things like diet, stress, and monthly hormones could NOT cause seizures. If he is correct, then everything that I've ever read on here and many other sites is incorrect. I always have a cluster of seizures a day or two before the onset of my menstral cycle, and according to him it's all my imagination. While I do agree with him that 3 years of uncontrolled seizures merits a switch to something else, my faith in his judgement is on very shaky ground.
 
 
Hi!
My son started taking Depakote in December of last year. He has absence seizures. The drug seemed to take away the seizures at first, but then the seizures started breaking through again, so the doc upped the drug. Each time we increased, he seemed to have less seizures but more bad behaviors for a number of weeks. He started gaining weight like crazy (does not know when to stop eating) so I have to watch his portion size and tell him he is finished when I think he has had enough. The doc wanted to increase the meds more, but I could not bring myself to it. I took him to a TCM practitioner and he is getting herbal remedies in addition to the Depakote and the seizures seem to be under control with this combination (and an elimination of potato from his diet).
 
My son is also on Depakote. He is on the brand name, ER version. When he was on the generic, he was very spacey, and really not with-it. He tolerates the brand name ER version very well. He doesn't really experience any of the side-effects and his seizures are mostly under control. Actually, with a combination between the Depakote, and the neurofeedback, he hasn't had a seizure in almost 13 weeks, which is the longest he's gone since his diagnosis in March, 2009.
 
I have also been on Depakote several time throughout my life and my seizures sound a whole lot like yours and come right before my menstral cycle every month too and when I am under a lot of stress, it's called Catamenial Epilepsy (meaning seizures triggered by hormones)

In all the years that I have been on medication for my E, (26 yrs) I've never been told to quit one med cold turkey and switch over to another. I've always, always, always been weaned off the one drug and gradually 'upped the dosage' on the new drug. It's dangerous not to do so and I would be looking for a new doc, namely an Epileptoligist, which is a dr who specializes in Epilepsy.

Good Luck! It's frustrating trying to find the 'right drug' and it may take awhile but when you do find it, it's worth all the effort. :)
 
Thanks so much for the feedback. While hormones are one trigger for my seizures, so is salt, stress, getting overheated, and believe it or not awkward situations (mine, someone elses, or even something on tv can trigger one). Often there is no trigger at all that I know of, and I've even been woken up by them in my sleep. Hopefully the Depakote helps with controlling the E, but already being overweight and the possibility of more weight gain worries me. I wonder what it is about the med that makes you gain weight? Is it a chemical effect, like not producing the chemical that tells you that you are full, and if so I wonder if there is a dietary suppliment that could offset it.
 
salright2baredneck said:
Thanks so much for the feedback. While hormones are one trigger for my seizures, so is salt, stress, getting overheated, and believe it or not awkward situations (mine, someone elses, or even something on tv can trigger one). Often there is no trigger at all that I know of, and I've even been woken up by them in my sleep. Hopefully the Depakote helps with controlling the E, but already being overweight and the possibility of more weight gain worries me. I wonder what it is about the med that makes you gain weight? Is it a chemical effect, like not producing the chemical that tells you that you are full, and if so I wonder if there is a dietary suppliment that could offset it.
Click to expand...

All of those triggers sound reasonable and everything that you just pointed out have triggered a seizure at one time or another for me, except for awkd situations and TV.
I've had countless #'s of seizures that I've woken up from in the middle of the night, (and during a nap in the middle of the day)
There are many meds out there that can cause weight gain/loss and many more things that is natural for your body to do, such as sweat/loss of ability to sweat, excess/loss of tears etc, etc., but I think that mostly the weight gain/loss issue with Depakote is mostly a chemical reaction of the med and the liver, (since that is where the Depakote and many other meds, are metabolized) it will screw up the body's metabolism and either slow it down or speed it up. With Felbatol I lost 30lbs in 3 months (140lbs down to 110lbs) with Lamictal it was the opposite, I gained 30 lbs in 3 months and then over the next yr I gained 20 more lbs.
I lost 50 lbs just power walking, eating better, cutting out ALL soda and replacing it with 4-6 bottles of water.
 
I'll be

quite frank--I ballooned up to 350 pounds on that **** drug. 'Scuse my French. I should only weigh between 175 and 190, which is about where I am now. I looked like.......well, a stuffed pork sausage tree. I couldn't bend my fingers or anything. I was absolutely disgusting.

By that time, both my doc and I threw a fit. I was on Lamictal at the same time, so it's hard to tell if the combo of the 2 interacted, but who knows. I'm on Lamictal now with no problems. I couldn't stop eating then. It was horrible. I was in size 28/30, and at most I should wear 14/16.

My brain was mush, I couldn't think straight, and my best friend was about to scream in frustration. So was my ex.

To each their own, though.
 
The mushy brain is already a problem for me. I even forgot my daughters name one day in a conversation! As I'm sure most everyone on here can commiserate, it's very hard to concentrate on any given thing for long, and being able to remember anything is a struggle. I'm still able to work, but my office is full of notepads that are full of reminders, and sticky notes that my co-workers post everywhere to help me remember stuff. Fortunately I have a wonderful work environment with people that understand my problems and are very supportive. A lot of people don't have that. I still get very frustrated with myself though, in not being able to remember things, and that was one of the main issues that I brought up with the neuro. He assured me that the Depakote would help me with my poor concentration and memory loss, but for some reason I really doubt that.
 
From what I'm reading on here, many of the AED's cause memory loss and poor concentration. But, so do frequent seizures. The longer my son goes without a seizure, the better his memory becomes. It's still not perfect, and he still forgets things. I suspect his memory is going to always give him problems until he's able to wean off his meds.

For what it's worth, I don't suffer from seizures, and I'm not taking meds, and my memory is absolutely horrible! I have stickys all over my desk to help me remember things. My co-workers pick on me because I have them stuck all the way around my monitor :roflmao:
 
Also for what it's worth, my memory seems to be normal for my age (45). I've been on AEDs for the last ten years, currently Lamictal.
 
Meds

I was put on Depakote right after my car accident due to suspicious issues even tough they had no definite EEG, or MRI. Biggest problem While it intialally worked well.. then came the weight gain, memory problems and hyper sensetivity to surroundings! I could not smell, see, touch or feel without being hypersenstive and the 40 -60 lbs I gained was not picnic either!
So for me not a good drug!
 
It really bothered me that my new neuro basically called me a nut job and insinuated that my seizures weren't real (even suggested Post Traumatic Stress Disorder), so today I went to the original neuro that put me on tegretal and got my records. Apparently the new doc made his decision without even looking at any of my medical records. I'm not a doc and definately cannot claim to understand clinical jargon, but it looked to me that my eeg showed seizure activity.

"Abnormal electroencephalogram. Mild diffuse bihemispheral encephalopathic changes noted. Left parietal structural deficit recorded. Right parietal epileptogenic activity noted at this time."

I have no idea what any of that means, but it doesn't look like imagination. Guess it's time to look for another doc, 'cause it sure looks like this one might not be the guy for me. The thing thast sucks about all of this is the same thing that most of us go thru. This is hard enough to deal with to begin with. Why can't doctors be supportive of the emotional turmoil that we have to go thru because our brains have turned traitor on us?
 
salright2baredneck said:
It really bothered me that my new neuro basically called me a nut job and insinuated that my seizures weren't real (even suggested Post Traumatic Stress Disorder)
Click to expand...

One of my neurologists told me the same thing except he phrased it as "I have good news for you, you don't have epilepsy". Of course that was my last visit to him. That was 11 years ago & I still get angry thinking about it. I'm also amazed how many other people have been told the same thing. I can't help but just shake my head at those neurologists.
 
Yeah "Anxiety Disorder" was another brilliant suggestion from mine due to one of my symptoms being an extreme fear/spooked feeling with the raised hairs on the back of the neck feeling. Obviously the feeling of high voltage electrocution (fortunately painlessly) that goes along with that didn't mean a thing to him.
 
I've been on Depakote ER 1000 mg. only for two years and have had no weight gain and very little in the way of side effects -- just a little fatigue now and then that may or may not be related to the Depakote. Haven't had a single seizure during that time either.
 
Great to hear that it's working for you Kansas! Hopefully it's going to work for me, but so far I've had 3 on the first day of taking the med and one today after a week of being on it. Guess time will tell.
 
I would give it a while before your blood levels are up to what they're supposed to be before you judge whether or not it's working.
 
How long does it take to titrate down from one med and up on its replacement? According the the neuro that put me on Depakote, one was replacing the other and titration shouldn't be an issue.
 
By titration he may have meant determining a dosage but any drug takes a while to build in your system, at least as far as I know.
 
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