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Kathryn

Sodium Valproate

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Kathryn   

It's a mood stabiliser. Has anyone any direct experience of taking it? Did it help and what were/are the side effects?

 

Thanks

 

K x

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bid   

Just to be pedantic, it's Sodium ValpRoate! ;)

 

It's brand name is also Epilim, and it was originally developed as an anti-epilepsy drug, and it's now one of the main front-line AEDs.

 

Bid :)

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lisac   

My son had this for around nine months when he was 16 along with risperidone . It is hard to say if it made the difference to his behaviour but my feeling was it was the risperidone. I felt at the time the sodium valproate didnt have that great an effect but i remember his hair going thin and when he came off it his hair grew back a bit curly (when its naturally straight). I think this was a side effect.

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Mumble   

I was on this for quite a while but as an AED rather than mood stabiliser. I don't know if the dosage and therefore side-effects and precautions are the same with each use, so please bear in mind that my reply relates to taking it for seizures.

 

Whilst it worked (almost) for me as an AED I had to come off it as the side-effects became unbearable. I tried to keep going with it with support from my GP but in the end we both agreed that the side-effects were distressing me so much and the distress in turn was distressing me (if that makes sense) that although it was doing the job it should have done, I would stop taking it.

 

Pretty much the side-effects Bid lists are what I got, although my neurologist did note that it was one of the most extreme reactions they'd seen:

The side effects I'm aware of include: tremor, irritability, weight gain, hair loss, menstrual irregularities.

Some of these it was difficult to tell whether they were caused by or exaggerated by taking the Epilim or whether it was just a coincidence and related to other issues, as I had a significant tremor and horrendous 'women's issues' the details of which I shall not go into, but let's just say even my GP was shocked :tearful:. However, I have subsequently been diagnosed with other conditions that explain each of these and they have remained since coming off the Epilim (and I have been off it some time now) so could just be a coincidence.

 

However, the irritability was a definite, which was also odd as I also experienced a sort of dopey/dazed state, so it was almost like there were two of me (very scary :( ) - the dopiness was so difficult as I found it almost impossible to concentrate on my studying.

 

Weight gain I can't comment on as I'm also steroid dependent and that has a much greater impact on weight gain and is something that I've always had to keep a close eye on.

 

The worst side-effect though, for me, was the hair-loss. First it thinned quickly and significantly (I would literally have hair all over my pillow-case and handfulls would come out when I washed my hair :( ) and eventually I developed two growing bald spots. Someone asked me if I was undergoing treatment for cancer as the hair-loss was so severe. Now I should stress that this was an extreme reaction and may have been exacerbated by other meds, but it really upset me. A good thing was that I didn't need a hair cut for 2 years so saved going through that and saved money!! :lol: A while after coming off the Epilim my hair did grow back, but not as thick as before and quite curly :curlers: - before my hair was straight. This appears to be a common experience.

 

The other thing to bear in mind (again I don't know if this only relates to taking it as an AED) is the fairly regular blood tests needed to assess the levels of the drug in your body. I'm so used to blood tests now it doesn't bother me, but it might bother someone else. Also, when you come off it, you can't just stop it, so even after us reaching a decision I should stop, I was still on it a while whilst I was weaned off and other medication tweaked.

 

Hope this hasn't scared you too much. :unsure:

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Kathryn   

Just to be pedantic, it's Sodium ValpRoate! ;)

 

Thankyou - not pedantic at all - and I've amended the title accordingly. :) (also clicked the blasted reputation button instead of multiquote :wallbash: )

 

Thanks everyone, that's really helpful - I didn't expect to get so much information. The reason I'm asking is that my daughter has been prescribed it by a psych in the Adult Mental health team. He has diagnosed her with some kind of bipolar condition (he didn't label it bipolar disorder).

 

She has always had mood swings and at first she wanted to try it but although she has collected the prescription she is having second thoughts. Her chief worry was the effect it would have on her mental functioning and ability to do her work (she is completing an access course and has a demanding few months ahead where she will have a lot of organisational challenges and needs to be on top form intellectually as well). So Mumble, your comment below concerns me as this is just the kind of effect she fears. Although maybe your dose was higher than hers would be?

However, the irritability was a definite, which was also odd as I also experienced a sort of dopey/dazed state, so it was almost like there were two of me (very scary :( ) - the dopiness was so difficult as I found it almost impossible to concentrate on my studying.

 

She would like to try counselling - (which is surely what she should have been offered first anyway?) to see if that works, before going on meds.

 

K x

Edited by Kathryn

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Mumble   

Her chief worry was the effect it would have on her mental functioning and ability to do her work (she is completing an access course and has a demanding few months ahead where she will have a lot of organisational challenges and needs to be on top form intellectually as well). So Mumble, your comment below concerns me as this is just the kind of effect she fears. Although maybe your dose was higher than hers would be?

 

She would like to try counselling - (which is surely what she should have been offered first anyway?) to see if that works, before going on meds.

I can't remember the dose I was on; I know once when I was in hospital the on-call neuro referred to it as the 'normal dose' which I remember at the time thinking was a really odd comment as everyone I knew seemed to have different doses taking into account many factors.

 

It would be worth, if you can, finding out how the dosages for different conditions compare and whether this has an impact on side-effects. I'm not sure where you would find that out though.

 

One place you could go for more personal experiences with side-effects is the Epilepsy Action Forum (but I think you have to register - I don't think you can view as a guest) where there's a lot of discussion of Epilim, but you do need to be aware that people tend to post more often if they've had negative experiences rather than to say 'was fine for me, no side-effects', so it can be a bit scary.

 

I'm sorry I can't give you a more positive response, but it was the zombieness and inability to concentrate that was so difficult. At it's worst, I couldn't go to seminars as I couldn't take things in and found myself getting irritated with myself, I couldn't read whole academic papers and couldn't produce coherent writing. Now my meds are fairly stable and I'm getting intensive support, the difference is pretty dramatic. Of course I still have unproductive days as the majority of the population does, and I can have what I call my 'dopey days' when I am struggling with things, but what I don't have now, which I had on the Epilim, is days when I want to work and can't - that's what I found really difficult.

 

I would think counselling should be a way forward before such drastic meds (dose dependent of course, it may not be drastic at lower doses) and especially if she wants to try counselling, because it's something that you do need to go to wanting to do. Maybe you/she could ask about (I don't know her symptoms so this is general) some less potent of lower dose med that may help her to engage with the counselling and various tasks asked of her to give it the best chance of success? For instance, I take a medication for anxiety, but it's short-acting and only taken when needed rather than daily. Initially it allowed me to actually get in the room and engage with counselling (I don't need it for that now) and now I can use if to dampen things down and, for instance, go to conferences, and then apply techniques discussed and learnt in counselling. So in a way, both work together and it's about getting the right balance.

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kirstie   

My son was on it for epilepsy, he became quite aggressive and moody on it so dose was lowered. Weight gain and acne another side affect! :-(

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katewarb   

Sodium valproate causes the degradation of proteins, including destroying collagen which causes bone loss among other potential problems. It disturbs the endocrine system, again with a whole host of potential problems arising from that, also inhibits steroid secretion. I doubt any doctor will tell you any of this. Basically these are the changes that are being made by the drug once you start taking it that you would never feel as immediate side effects and so will go on thinking everything is fine. You might not notice any symptoms until years after you've stopped taking the drug, at which point it would be difficult if not impossible to prove the drug is to blame. By which point it would be too late anyway. Proteins and in particular the collagens are the stuff which keeps our body tissues held together, providing the support for the entire body. We lose them as we age anyway. People with hypermobility or any sort of connective tissue problem to start with should NEVER take this drug, though I doubt any doctor would mention that either. As a victim of this drug it is up to me to tell people the facts that I didn't know when I was taking it, and then let them make up their own minds. If you still want to take it or give it to your child, it's up to you.

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Nmason89   

Not too sure if this is going to get read or not.

But there is one thing I would like to point out. If your child gets to child bearing age or is thinking about getting pregnant and are still on Sodium Valproate, I would strongly advise to speak to a consultant or a doctor regarding changing the medication. Sodium Valproate isn't a good drug to be taking during pregnancy.

This is coming from experience.

 

Thanks

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