Valproic Acid tips

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

M

masterjen

New
Messages
2,080
Reaction score
0
Points
0
I'm about to start this medication. I'm more concerned about side effects with this one than any other medication I've been on, and my biggest concern is weight gain. I'm already near my limits with the amount of exercise that I do and I am very conscious about healthy eating, but I know that sometimes this is not enough to avoid weight gain.
Can anyone offer me advice on how to avoid weight gain, and any other suggestions about adapting to this medication?
 
I've been taking it for over 20 years. Starting at 15. I don't remember any mental side effects.but I did gainabout 50 pounds in 7 years. I just thought I was growing. But I always stayed inside my home. After I noticed my double chin I thought the least I can do is walk around in the day. I have lost 30 pounds in almost 4 years. So I think it can be easy to lose any unwanted weight caused by medicine. But I can only give my story. And its probably a bit odd.
 
I'd say to be aware of your weight but don't be so concerned that you overlook other side-effects.

The problem with any AED is that we don't know which of the listed side-effects are going to effects us. Also, remember that some of the listed effects have an extremely low probability of occurring but must still be listed by law. I'd always wished that when listing side-effects they had to list the probability of each side-effect occurring (at least reflecting the most current knowledge). I know it's something you're concerned about but keep in mind that it's very possible (maybe even likely) that you will have no problem with weight gain.

I've been on Valproic Acid for many years (I have since discontinued using it) yet I was so skinny that one friend actually thought I was abusing hard drugs.

My personal advice would be not to worry about it too much until you know that it's an issue.
 
Last edited:
I started taking this med about 1.5years ago. I have not really experienced any type of major weight gain. I am a Pre-K teacher, so there is a certain amount of physical activity that comes along with the job. Other than my job; I really don't really do much other physical activity and have not gained that much extra weight.
 
I gained a Googolplex in Planck time...jk...I think at first I gained a little bit of unwanted weight but then I made a lifestyle change which includes consistently working out and eating healthy...the only area I'm struggling in is the sleep department...but that's due to my mania :eek:

I take 3 x 500mg Depakote ER daily...
 
Last edited:
Hi Epileric,

Just thought I would answer your post regarding the weight gain of sodium valporic acid. I'm from the UK and we call it sodium valporate. I was on for it 30 years - from 1983 to 2015 which is not supposed to happen which is not supposed to happen due to the body getting used to it which is GP that I was consulting at that time did not even understand. She thought it was ok for me to sleep from 11pm to 11am the next morning.

My mam said that I had to come off it as I was really sedated. She told me that I always had to have a nap about 3pm for an hour. I just thought that was ordinary life for me as I was seizure free for over 20 years. It had to be increased in 2012 due to a big seizure I had to 800mg (400mg twice daily)

My mam said, "Right that's it. What if it needed to be increased to 1000mg (it's posible) in the next 5 to 10 years" which would be a lot for me". I would be really sedated.

She and I had worked in St Luke's which is a hospital for people who have mental problems and many of them are "doped up" My mam did not want my life to go that way - neither did I. Even the GP I was consulting at the time did not even consider that. The GP even told me that she did not understand or have any knowledge of Epilepsy. In the UK we are now given a named GP but we can still see any other GP. I don't even understand the point of that. I know it was the Practice Manager at the time who gave the name of my GP as this GP. The Practice Manager should have known that the GP did not know anything about Epilepsy. As the GP was my "named GP" I went to her automatically. No help there as when I went to her she did not even consider that my Epilepsy could have a bearing on my problems. Get that, that's great isn't it. My mother was more help. The GP did not even know that in 2015 there is now a lot more ant Epileptic drugs out there.

Right, the reason why I am writing this. After the increase from 600mg of sodium valproate to 800mg I slowly gained weight. In 2012 I was just slightly over 8 stone but in 2015 just before I came off it I was 9 and a half stone but nearing 10 stone. I am sure after another increase I would gain another stone. I know that all drugs effect every person differently I just thought would let you know what happened. Actually I am a little surprised that the lady who previously posted on this subject she was prescribed it as sodium valproate has a lot of side effects. However, I have been told that it is very good at stopping many types of Epilepsy.

A previous neurologist (specialist in Epilepsy) kept telling me that the alternative was to go back to sodium valproate as it stopped my seizure - even though I had been on it for 30 years. I was consulting him to come off it. This neurologist had not even considered my quality of life. I just wonder if some neurologist in that hospital knew what sort of neurologist he is. Wishful thinking, perhaps? Research has told me that Doctors are supposed to "treat the Patient, not the level".

I am now taking lamotrigine and possible lacosomide (US vimpat).

I hope you are having a good day.
Debbie
 
Hi masterjen,

I was on valproic acid for many yrs. but it made me lose weight. The best thing to do is don't eat anything but fruit after 7 pm and keep active. Also never take the med with coffee or anything with caffeine in it or you will feel like you are flying high.
The drug worked great for me and reduced my seizures well but my body got used to the drug so I had to go off of it. Also keep your eyes open and if you see a lot of bruises on your skin it's because your blood platelet is getting low and that's not good. This also happened to me along with low blood pressure so be sure to drink a lot of fluids.
I wish you the best of luck and May God Bless You!

Sue
 
epileric said:
I'd say to be aware of your weight but don't be so concerned that you overlook other side-effects.

The problem with any AED is that we don't know which of the listed side-effects are going to effects us. Also, remember that some of the listed effects have an extremely low probability of occurring but must still be listed by law. I'd always wished that when listing side-effects they had to list the probability of each side-effect occurring (at least reflecting the most current knowledge). I know it's something you're concerned about but keep in mind that it's very possible (maybe even likely) that you will have no problem with weight gain.

I've been on Valproic Acid for many years (I have since discontinued using it) yet I was so skinny that one friend actually thought I was abusing hard drugs.

My personal advice would be not to worry about it too much until you know that it's an issue.
Click to expand...

Hi Epileric,

Can you tell me how long you were on sodium valporic acid and who suggested you come off it. Was it your doctor or neurologist?

I'm from the UK. Our Patient Information Leaflet that comes with the pills tells us what the probability is of each side effect eg. very common: 1 in 100 people, common: 1 in 1000 people and so forth. Doesn't that happen in the USA regarding drugs.

I have often wished that the FDA (USA) and the MHRA (UK) would share information regarding drugs and the side effects that are known. Zonisamide was granted a licence in USA 2002. It was only granted in 2012 here in the UK. If the side effects of zonisamide had been shared I think my GP and neurologist would have taken more notice of me as I was suffering from "aching" (USA and UK both know this), "burning sensation", patches of parathesia all over my body (and not pins and needles as listed in leaflet from UK) All of the latter side-effects were listed in the USA's websites and not on any of the English websites. I don't know why information is not shared as, how can I explain it, we are all human beings. Side effects can be shared by people, after all we are using the same drug. What do you think?

I hope you are having a nice day.

Debbie
 
Hey Debbie -- You might want to start a new thread about valproate (this one is a bit old).

Best,
Nak
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom