Epilim: Effect and Side Effects

I used to take Epilim (Depakote, Depakene, Valproic Acid, Divalproex sodium) as a mood stabiliser. When taking it my mood swings stopped and I felt more solid emotionally. However there were problems…it tended to stabilise me in mild depression. It took me a number of months to figure this out, but once I realised it was doing this I stopped taking it.

When I first started taking Epilim (400 mg/day), my life became smoother. I would take the tablets and go about doing the everyday things. My emotions quietly settled down and my mood cycles stopped without me paying any attention to them. Without having to do anything, I simply stopped becoming overwrought, managed stressful periods calmly, and didn’t overreact to anything.

I was able to go back to my regular daily schedules, which no longer seem insurmountably difficult or too slow paced and rigid. In fact, I didn’t need to pay too much attention to being bipolar except to take the medication regularly and marvel at how easy normal people have it.

It was as if the Epilim just calmed the waters. No more roiling emotions. No more cycling. It would have been perfect and I really thought that Epilim would be it, the magic medication to take and forget.

I wasn’t so lucky though. After a while I started becoming resistant to the Epilim, which caused me to destabilise, which caused me to stop taking the medication as my life went haywire.

When I stabilised enough to go to see my psych, she increased my dosage from 400 mg/day to 600 mg/day. It doesn’t seem like much, but it did stabilise me. The increase in side effects, however, was dramatic.

I started feeling really nauseous, as if I wanted to throw up all the time. The intensity varied, but basically for as long as I was awake the sensation was continuous, night and day. The nausea was worst about half hour after I took the tablets (morning and afternoon) and gradually tapered off to just being bad. And as I got hungry, at lunch time or dinner, the nausea would increase, although it was never clear if this was psychological.

I never did throw up, by the way.

This went on for nearly a month. For the first two weeks or so I didn’t mind because I was so desperate to get stable that I would have lived with anything. However, once my moods settle down and I stabilised, the nausea itself began to be a problem. It’s really hard to believe that life is back to normal if you feel as if you want to throw up all the time.

I knew from reading that the side effects of Epilim go away with time, so once I stabilised I kept hoping that the nausea would disappear. But by the end of the third week on Epilim with no abatement of symptoms, I was ready to pack it in and tell my psych to either reduce my dosage or find something else.

I wasn’t keen on either of those options because a lower dosage could mean that I might destabilise again, as I had done the last time. And switching to a new medication would mean trying to find out if would work – a process that would lose me about three to four months of my life as I switched, destabilised, and tried to settle down again.

In the fourth week, the nausea abated. Thankfully.

The nausea wasn’t the only symptom. Along with the nausea came the sensation of acid reflux, as if the upper part of my stomach and my oesophagus was burning. I don’t think it was acid reflux in the conventional sense of the term, but the sensation was there.

I also got photosensitive during the third week I was taking the Epilim at the 600 mg/day. Or maybe I was photosensitive from the start and it only showed up during the third week when I went out in the sun. When I did, it took less than thirty minutes standing outside to get sunburned on my cheeks, which promptly turned a brilliant red and started itching. They didn’t quite peel, but it was close.

I have brown skin, so normally it would take two or more hours in the sun for me to sunburn, something which had not happened since I was in my teens. The experience was so unusual that it took about two days of having red itchy cheeks before it occurred to me that perhaps I was sunburned because the medication was making me photosensitive. That was when I started to carry sunblock (SPF30) in my car.

I also found out that Epilim and alcohol don’t work very well. It was Friday and I was relaxing with friends and I decided to have a beer. However, by the time I had drunk half of the bottle, I was feeling so ill that I really thought I would throw up there and then. The onset wasn’t gradual either. One minute I was fine and two minutes later I was feeling awful. I stayed really nauseous for the next two hours, feeling very miserable and sorry for myself.

I swore off alcohol after that incident. It’s annoying because at my old 400 mg/day dosage I could drink socially (a glass of wine or a beer) with no ill effects. I suppose that I’ll eventually experiment with having a drink again. But not in a hurry. I have no desire to feel that way again.

The Epilim also makes me sleepy. Really sleepy. When I first started taking it I would be groggy all the time. But like the nausea it has faded with time.

But I didn’t notice it initially. While I was home stabilising, I was drinking about four to five cups of coffee per day. And my sleep pattern was shot to hell, so I didn’t notice any grogginess.

Similarly, when I started back work (sorta), I was drinking about four or more cups of coffee a day. Apparently the caffeine cancelled out the sleepiness and I was left feeling more or less normal.

However, I really felt the grogginess the first weekend after I stabilised. I was home, and I usually don’t drink coffee on weekends. I got up at nine, staggered around for forty minutes and went back to bed. Got up at twelve, stayed up for half hour and fell back asleep. This went on all weekend.

It scared me because this is such a classic symptom of depression. I thought I had destabilised all over again. It wasn’t until Monday at work, when the coffee kicked in that I realised what had happened.

I now drink immense amounts of coffee. One cup with breakfast, as much as I feel like during the day, and one or two cups after dinner. If I don’t drink coffee after dinner, I fall asleep within two hours of taking the Epilim.

I get no side effects of coffee. None. I even go to bed when I feel like and fall right asleep.

I also run an elevated body temperature when I am on Epilim, as if I have the flu. It is quite noticeable. C. likes it because I am a warm cuddly person in bed. When I am not on Epilim, my body temperature returns to normal.

When I last started back up taking Epilim I was quite manic. It pulled me back down within a day, which is a bit quick, but I have tended to be a bit sensitive to drugs. However the Epilim didn’t immediately stop the cycling, so I also cycled past normality into a slight depression.

And unfortunately I got stuck in the mild depression as the Epilim kicked in more strongly. Instead of cycling back up out of depression in about three days, which was the cycle pattern at the time, it took a leisurely two weeks to climb back to normality. That was not fun at all.

That seems the way Epilim works with me – as a relatively fast acting anti-manic and as a slower acting mood stabiliser. The stabilising effect kicks in only after I’ve taken it for about two to three weeks and it kicks in progressively, so I have to be careful when I start taking the Epilim to prevent it from prolonging my depressions.

The problem with Epilim is that it is too much of a good thing. I last stopped taking it when I was under high stress because I figured it was one more thing in my life and I could do without it. And why the heck not. I was feeling good.

I immediately started my rapid cycling again. It took nearly two and a half months to get my life back in some semblance of order. Worse than that, stopping the Epilim cold worsened my cycle pattern and instead of a 14-20 day cycle pattern, I ended up with a 6 day cycle pattern, which was terrifying.

I started back up the Epilim and kept taking it every day as I should. However, I eventually ran into a final problem which took me quite a while to figure out. Epilim stabilises me, but it seems to stabilise me at a point were I am not completely functional.

I feel fine, that is, emotionally stable and clear headed. Unfortunately, I was acting as if I were slightly depressed. Everything is hard to do and I have difficulty in completing tasks. It sounds as if it isn’t a major problem, but it was and it affected everything I did.

It took me nearly four months to realise that this was happening. During that time I was waiting for the depression to lift or I assumed that I just needed to get my act together. But I just couldn’t get my life to function properly.

My psych thinks that I might well have stabilised to normal, but because I have gotten used to being hypomanic I cannot be functional at normal. It’s a moot point though – if I’m not functional, then I’m not normal, regardless of what normal means to other people. It could well be that I can only be fully functional when I am slightly hypomanic, but if that’s what it takes, then so be it.

I currently don’t use Epilim anymore, but it remains in my list of available drugs as a mood stabiliser that may need to be taken with an antidepressant.

101 thoughts on “Epilim: Effect and Side Effects

  1. hi
    I care for a patient now taking epilim 700MG per day, my patient has been through much of the same issues you have written, however the big difference is my patient with encouragement has benefited from the epilim by not stopping and starting the medicine, all the side effects were there at some time or another at different levels, but the longer on the medicine they just faded away and my patient now has a very stable life. I beleive if you find a treatment that works for you and the side effects are minimal then sticking with that for the long term will see the greatest benefit. Sunburn, nausea, weight gain, itching skin etc are not serious and do reduce with time, drinking coffee, alcohol, smoking etc are pleasures for many people, however mixed with illness or medication they only worsen side effects and the benefits of the medicine, those are choices people can make, doing without medication is not a good choice if you have a serious disorder.

    • l am a carer, 600ml seroquel and 1200gm eplim per day, works reasonably well for bi-polar sufferer, problem is at night 1 hour approx after taking medication wakes up not in a good mood has to get up to get away from drouzziness, goes back to bed sometimes has nightmares needs to get up to break mood. sometimes high risk of falling throughout night feels like ……..so drugged up very uncomfortable don’t know wether it’s seroquel or eplim not working well.

      • The med Seroquel, I found, was bad for me. Sometimes unable to sleep. But the worst effect for me was the following day when I was dopey and unable to function for the next 10 hours.

      • I think i’ ve developed side effects after using Epilim for 2 weeks to prevent Epilepsy,but my life became a nightmere because I ‘ m not myself.Please help by giving advice to return to normal life after accident

    • Most of my life I was on 1500mg to 2000mg of Epilim daily..only about 1,5 year ago I started to have unpleasant side effects.I gained weight,etc..now I try to take only 1000mg at night! Life with super mania is horrible

    • Sunburn – swim at an indoor pool ; itchy skin aloe vera gel plus urea or pinetarsal; weight gain smaller food serves. Agree one can choose not to drink coffee or alcohol and be a non-smoker. Bipolar is a serious, chronic illness but it can be managed. Good Luck my friends!

    • I’ve been on epiilin for a month now. I feel so much better. Stress was the course of my seizure which came from nowhere but I’d hate to experience that feeling of being lost and insecure again. I’ve religiously stuck to Dr’s instructions and I feel so much better. The only side-effect I really struggle with is reflux but a small price to pay for what I went through. The only right way is to stick to the Dr’s medicine protocol and not take yourself on and off at will. Remember you are dealing with the complexities of a brain and you are dangerously playing with your brain by not sticking to your DE’s instructions/advice. Only because I’ve been there and pushed through the unpleasant side-effect to reach balance. Please do this for your own sake. Dr. can prescribe something to ease the nausea. I really hope you cope and beat this awful affliction. Look after yourself💐

      • A thoughtful response to the question of dosage, etc. I am glad for you that it works. Currently on a bipolar high and the Sertraline dose I take is too low to control it. But golly I feel happier in myself. Probably a false emotion when one thinks about it.

        For those in deep despair, this may help: make a list of 2-3 things you want to get done in a day. At first, getting no.1 done is all that matters. Stick with it. We can function in this world, and we do need much support. Hugs!

  2. Thank you so much for sharing i can relate totally. I did the cold turkey option because of not wanting to mix with other drugs and alcohol. I am seeing a new nerologist to get on a better drug.

    Thank you for sharing

  3. I would Really like to no how to get of the epilm (it kills my sex drive) I take 400 night 400 morning . I hate it. But feel like death when I try to cut down. Can you please help me ?? Mark devine

    • Mark, it depends whether you are taking Epilim to stabilise your mood or to manage seizures. Ask your doc about an alternative like lithium if you need a mood stabiliser. I switched from lithium to Epilim and now take 1000mg daily in split dose. I know people who have switched from one to the other and felt better. The transitional period is a pain though; I became quite unwell. So talk to your doc.

    • Trying to get off Epilim myself. Sex drive seems OK, if one accepts “Mrs Palmer and her five daughters” as a means to an end.

      Spousal sex ended five years back.

      I have been on Epilim and one tablet of Cymbalta for about four years. Can’t say if either of them have helped.

      • How are you finding it coming off the epilim ? How much do u take? How much r u coming off at a time ? Do u think it effects your memory ? All the best. Mark

      • Mark, it is too soon to say in my case. I take 400mg in mornings and 600 mg at evening.

        Last two days I have cut back to 400 mg both morning and evening and I will further reduce in 5 days time.

        Part of my withdrawal is that it is complicated by a heavy cold I have had for the past 4 days. I do not attribute that to meds, but to a lowered immune system. It is winter here.

        My main means of tracking/assessing my moods, etc. will be via diary entry and score. At first light, I am 4

      • One other thing I need to reveal is that I am out of work currently. And in the isolation of home so I control how much social interaction I have.

        Part of giving up my meds is the costs of them.

        Mark and others, you do need to make choices for you as an individual. My bipolar is described as cyclothymic, which I have understood in the past as a series of highs and lows.

        Now in my mid fifties, my main concern when fully off my meds is impulse control, as well as monitoring moods.

      • Sex Drive coming off Epilim. My slow reduction still in progress, but “Mrs Palmer” may need to take a holiday.

        Almost at climax on 2 occasions recently, when an extremely severe headache appears from nowhere on the right hand side of my skull, level with my ear. Do not know what causes it, but it stops “Mrs Palmer” dead. Any doctor’s comments?

    • Haha tell me about it! I am on 1500mg in the morning and at night, and yeah i have no sex drive AT ALL, i was thinking it was from all the marijuana I also smoke, never thought about the other drugs, i also take seroquel and dexamphetamines

      • Hi, Really glad I found this discussion. I take 2 x 500mg Epilim daily for epilepsy. I’m 56. I developed epilepsy just over 30 years ago after a severe bout of shingles on my head. For the first couple of years I was on no medication. Then I started on 200mg per day – though my neurologist told me that my epilepsy was relatively benign. I then moved up to 500mg daily about 15 years ago and 2 x 500mg 8 years ago. My issues with it appear to be twofold:

        1. Since I moved up to 2 x 500mg, I appear to be having these occasional Bi-Polar ll type episodes where I’m feeling great, then it all ends with a bang. The depression side of these episodes usually starts with a slight absence (petit-mal). I then feel crap for a few days and look like death. Eventually it wears off and I return to normal.

        2. The more worrying aspect of things since I moved up to 2 x 500mg is its affect on my sex drive. Its gotten so bad that I’m questioning my sexuality. “Am I gay?” Yet, I walk down the street and what am I looking at? Beautiful women. But, I feel nothing. I have found in the last few years that I have had to resort to porn to stimulate interest.

        In the last month, we’ve have great sex on, maybe, half-a-dozen occasions. (I would define “great” as intense, simultaneous orgasm).

        But, I am almost apprehensive about the way I feel I have to work my way up to it (if you’ll pardon the pun! :))

        I adore my wife. She’s an extraordinary woman.

        I’ve probably gone on too long, but I just felt I had to let it all out.

        This is a great forum. Thank you.


  4. Ended up at a lovely funeral for my auntie today.

    One of those life events that turns me into an emotional cot case. Will continue with 400mg Epilim morning and night for the time being.

    Mood is positive, around 7.

  5. I take 1500 mg of Epilim daily,,,,but sometimes I feel really low ,and some times too high ! Sleepless nights..4-5 on the row ,or unable to wake up ! Life very often is night mare a

    • That seems like a high dose, but as I have said on this forum before, we are all individuals and we have to trust our doctors AND ourselves to come up with something that “works.” Do you drink alcohol or take other meds that may affect your sleep.
      My own sleeplessness is due to being in an unhappy job situation. I don’t my meds can straighten that out!
      I am in my 60s and about to partly retire and will find it increasingly difficult to afford meds. I am looking into “hypnotherapy cds” as a permanent alternative to the cost of meds. Too early to tell if this will be successful.

      • It is .low. Dose,,,,,.high could be few thousands mg,I do not smoke,drink,using drugs,cooking my own food,simply I am bio polar forever! One day Einstein the second day zombie. Sleeping and dreaming.,,,,,,

      • Mark, I started today to reduce Epilim at night to 200 mg, with 400mg in day times.
        Feeling good with stable positive mood mostly for past 6 days.

  6. Dosage of Epilim is partly based on body weight, so 1500mg is not necessarily a high dose. I think the ratio is 20mg per kg of body weight per day. That means if you weighed 75 kg, then 1500mg would be your maximum daily dose. I could take a higher dose but I have to balance that with side effects (tremor, fatigue, skin rashes). There are so many factors to be taken into consideration, it’s annoying!

  7. Epilim was reported on local TV as being associated with having SPINA BIFIDA in babies. Warnings to women on Epilim to consult with their obstetrician/gynaecologist BEFORE falling pregnant to adjust the dose.

  8. For Mark. I am now off both Epilim and Cymbalta. My mood seemed stable and positive at first. However, over the past 2 weeks I have had considerable joint pain. My mood fell as a result.

    A consult with my psychiatrist revealed that the aches and pains may be due to my brain’s reaction to events in my life and that going back to an effective “anti-depressant” may eliminate the pain.

    We have agreed to continue monitoring the situation.

  9. Noel, I posted on this early noting that I was taking 1000mg. I’ve now had to reduce my dose in half after experiencing sudden rapid weight gain due to fluid retention and subsequent high blood pressure. The reduced dose means I’m getting breakthrough depression and hypomania – manageable (just) – but worse is the pain. I didn’t realise how well Epilim worked against pain. My joints and muscles ache now. Frustrating.

  10. Hi my husband was given Epilim for severe daily headaches 1000 mg a day,but I’ve noticed from the comments that people are taking it for bi polar and depression,is this what it’s usually prescribed for?

  11. Reading your story shed some light on what I am going through at the moment. I am on 800mg of Epilim a day and I have been on it since I started (2 months ago) and I think its time my phsyc upped my dosage because I’m starting to feel immune to this dosage. I am worried about the headaches, heartburn & nausea. I really can do without that as Epilim has helped me a lot in terms of my mood.

  12. Hi I have been taking epilim now for about 4 years and was on zoloft as well for about 10 years. Stopped taking zoloft after gradually reducing doses about 12 months ago. Have had a tough year with some very low moments but determined to stay off the anti depressants. I have been doing research on the benefits of nutrition and mental health and also found some interesting info about lithium orotate. Has anyone used it with any sucess

    • Brett,
      Your post reminds me that I have been off Epilim and Cymbalta for some 4 months now and I too have been going through “hard times”: sudden episodes of tears, especially in relation to my deceased parents.

      I have finally begun an exercise program based on swimming as it is summer here and I find the exercise is helping my moods. Will follow up later here as i have only been doing it for 1 week.


      • I have also found some relief in working out. I do Pilates and it helps me with regulating my moods so do not stop ur swimming it will help a lot! I’m living proof…

    • I have had bad depression turn worse on zoloft. It sent me worse. My uncle was on zoloft and took his life. My mum also had bad experience with zoloft. Yet ive been on Facebook lexapro for 10 yrs or more. Some liws but generally ok

  13. Thanks so much for your experience with epilum. Have had no luck with antidepressants to treat my sadness and anger , dr has suggested epilum, got the script filled but am very reluctant to try it. From your sharing I have decided not to go there.

  14. I’ve been taking 800mg of Epilim at night for a few years for bipolar 2 and can’t say I have any side effects. Mind you I can’t remember what I felt like before I started taking it at 600mg dose. I sometimes have to take a low dosage of Olanzapine if I get a bit manic – which makes me tired and zombie-like. But with Epilim I’m full of energy and cheerful – able to exercise and work nornally. I’m tempted to drop the dose to 600mg as I could do with losing some weight (only slightly overweight), and am a little concerned about long term effects on liver etc (although blood tests are normal).

  15. I’ve just finished reading a book by Paul Torday called The Girl on the Landing in which a schizophrenic decides to stop taking his medicine and initially feels much more himself, although he then went on to murder a couple of people. It does paint mental illness in a bad light, but shows quite an insight and is a good read. I think I’ll keep taking my prescribed dose though, as it works well for me. I get a bit of heartburn which could be related, and it doesn’t prevent me from getting stressed all the time. Life can be stressful, after all – so I still need the Olanzapine or Zopiclone sometimes. Whether Epilim causes me any weight gain is difficult to measure – I don’t feel ravenous when on it, although have a healthy appetite (my BMI is 26).
    Olanzapine on the other hand I cannot tolerate well. It does its job of calming me down and is good to take for a few nights to stabilize when required. However, it makes me drowsy the following day, no energy for exercise, listless, a bit depressed and very hungry. Also alcohol doesn’t mix with Olanzapine, but with Epilim I can eat, drink and be merry ..in moderation! Happy Christmas.

  16. I was on Valproic acid (2x500mg) for 25 yrs. It helped me have a successful teaching career but it was tough going. I also took Apo perphenazine 12 mg. I am now retired and lately switched to lamotragine. Lost weight and more energy now. Wish it had been around before. Still taking perphenazine, I will never let that go.

  17. I am really sad for patients and carers having to dish out this medication, I have seen first hand the side effects of long term usage and it his horrid, yet without the medication many times death happens and a beautiful person is lost. I am torn up about this at times and I hope I don’t end up on the same medication. My regret in life is not to have made good use of my brain and be able to do something useful like finding a cure for mental illness. I really admire carers and also people who voluntarily take their medication.

  18. I look after my brother who has a severe brain injury. Everything was pretty good with him for the first few years then suddenly two and half years ago started getting aggressive/angry, (not physically well not yet anyway). Everything that could be checked was checked, (the shunt in his head is working fine), had to have that because of a seizure. Anyway my problem now is he has been on Epilim for several months, he started at 200mg then went to 400mg and now is on 600mg. We have noticed a huge difference especially the last few weeks and now the last few days , behaviour wise he just seems to be so grumpy. We went through a neuropyschiatrist to get the ball rolling on this who is in another town, several trips back to our own doctor and now he won’t play with the medication anymore, I am completely lost and scared as to what to do next, do I decrease it or take him off it cold turkey?? Our own doctor doesn’t want me decreasing it or taking him off it. We are currently waiting on an appointment back to the neuropsych to discuss the medication/issues further but as this is with ACC it is taking time meanwhile I am being yelled at. The only words that seem to come out are ‘whatever’ and ‘sorry’ very loudly and angrily most of the time. We are walking on egg shells with him and cannot go out much as we don’t know what will set him off. He has extremely bad road rage when with his carer and others, not as bad with me. Thanks for reading, guess I just wanted to share and try and unload some of the stress.

  19. I have been prescribed Epilim as a mood stabliser as I suffer from severe anxiety and panic attacks. It seems though, it is prescribed for people with bi polar. My partner who is now my ex has bi polar and doesnt take meds for it. Ironically this is the reason I am now on this medication as going through the manic highs and manic lows with him led, in part, to me developing my own anxiety disorder. Does it really help stabilise your mood? I literally just started taking it today. I was prescribed 100mg twice a day. I have been a guinea pig, first luvox, then pristiq, then Zyprexa. Now Epilim with the pristiq. I just want to feel normal again not like the most simple thing can leave me in a state of panic at the idea of having to do it. Anxiety is like slow torture. It really is. I dont even get a break from it when I sleep as I now have nightmares.

    • K,
      Everyone is different, so to be a guinea pig is what we all are to some extent. If I were you, I would persevere for 2 months to see if there is an improvement.

      In my case, a few things like worry and anxiety, as well as a snoring wife, do interfere with my sleep and my doctor prescribed a mild sedative to help.

      Personally, I believe meds can only help us to “get through” our challenges. They do not return us to “normal”, whatever that is. Another tool that may help you is the use of a relaxation CD. I find that half an hour of this practice can eliminate worry and anxiety and though it is a temporary feeling, it helps to break the cycle of increasing muscle tension. I hope this suggestion helps you.

    • I agree with Noel. You should consider some of the relaxation / meditation techniques. These won’t ‘fix’ the anxiety, but they will provide you with techniques on how to bring the anxiety down from an overwhelming level to something you can cope with. The bad news is that it takes practice to learn them, so they won’t provide you with relief immediately. Which would be nice.

      Here is one technique that I try. I tell myself “There is nothing in the world that will fail if I take a 5 minute time out.” And that’s true – there REALLY isn’t anything that can’t wait 5 minutes. And I try to use the 5 minutes to go somewhere quiet, and take slow breaths, and generally try to calm myself. Notice this doesn’t solve any of the things I am anxious about. But it often lowers the anxiety level, and that’s all I’m after.

      Try it. It’s easy to do, doesn’t cost anything, and you’ll know if it works for you after a few tries.

      I’m also flagging on what you said – “I just want to feel normal again not like the most simple thing can leave me in a state of panic at the idea of having to do it.” To me, that’s a sign of depression, not just an anxiety disorder. It may not be a bad idea to follow up on this with your doc.

  20. I have been on Epilim Chrono 500mg * 3 a day for 20 yrs , reading all my fellow friends comments upon epilim. I have felt most of the side effects from the drug & know I am 40’000 MG’s of meds each week, I have developed DDD Degenerative disc decease & given option From QE hospital for surgery but advised not to’ I am on morphine patches as well as Tramadol Sr 100mg & Kapake , Lansoprazol, Amitriptaline 25mg this list has messed my life up from love to mental state of myself. Doctors do not care….

    • I have been on epilim for about 6 years 800mg/day and last few months developed a rash on my butt :p
      I have no idea what caused it … reading your stories I am now wondering if it is the epilim causing it ??
      it is very uncomfortable
      any thoughts?

    • Took epilum for 7 days. Had bad itchy rash for 8 wks. Dermatalogist did biopsy & confirmed that it was reaction to epilim. Rash is beginning to recede. Tried all kinds of OTC anti-itch creams etc. Rash drove me cracy.

  21. Thanks for this Noel. It’s a big help.

    I have Asperger Syndrome and only diagnosed with Bi-polar Disorder on top of it about 4 weeks ago. I’m now on 800mg Epilim daily, along with 1mg Riperidone and 100mg Pristiq. I was only diagnosed after my family noticed my erratic cycles between hyper-mania and depression, and thus became concerned – previously it was put down as simply symptoms of Asperger Syndrome.

    Like you, I’ve noticed that I’m now trapped in a mild form of depression after starting my Epilim regimen about 2 weeks ago, a long with mild migraine headaches, mild nausea, and constant urge to sleep in bed for all hours of the day and night. This has left me completely unable to function at work at all, because the combined effects of the Epilim and my Asperger condition leave me almost catatonic when under stress.

    I’m hoping I can return to work again once more in very very near future with some semblance of normality.

  22. Exactly my experience on the meds. I was function pretty well on Lamotrigine for about a year before I got the rash. My psych moved me onto epilim four months ago, and I’ve now stabilised in mild depression and extreme tiredness. I’m thinking of coming off it but I am so scared.

    • Dominic,
      I have been off Epilim for over 12 months and I was tempted to go back onto it recently, when my mood dropped significantly. I decided not to take it and my mood is still very depressed. I have found that the meds do not improve my mood significantly enough to keep taking them, BUT and this is a big consideration, my sleep is very poor, averaging 3-4 hours per night, and I may have to re-consider. It does not hep that I sleep with a snorer!

  23. I used take 2500ml of eplim it has never suited me from day one I was on depicote I have recently been given dosage of this but have told the doctors for up to five years that this was the problem I have been going between shrinks and gps but no use. I was a 16 stone (102kg) before i was on this med I went onto becoming 24stone I also take Olanzapine at 12.5mg and was started again on ariprizole 10mg which started to lower my weight to 21 stone but this means that I have to spend £25 on a fitness coach which is criminal.

    I have been on Olanzapine on and off since 13 I am now 27 and I am really hating my weight I used to play rugby from the age of 19 till 26 but my fitness is really bad and get worried that I will have an episode on the pitch so don’t play or drink anymore.

    I used to go out drinking every saturday night but found and would not take my pills that night as I thought that something could stop my hart or summit.

    I also played the trumpet till the age of 18 but barley play it I also have a music degree and a job as a junior programmer.

    I used to work for McDonald’s and whilst working there I used to be sick every day because of the Eplim the doctors when I went into hospital wanted to put me on the lithium but my parents refused.

    In the early day’s I used to really struggle sleeping and went through a period in the beginning of sleeping for about 2 hours in a week and lost 2 stone in weight.

    This then progressed to me been depressed this was while taking my year GCSE years at school. As most people did not understand what was going on I lost all of my friends and most people would not talk to me.

    I had another 4 years of this so went from been the leader of a group to the loaner in the corner of the room and would just sit in the class drugged up with 2mg of olazapine or an antipressant valum i think at the time.

    I hated my parents at the time and this would be very true unto the first time I got arrested outside lincoln police station and assalted by the police and an equerry was almost held but my parents wanted the police to help them in the future what a joke that would be. three years later i would steal a ambulance and 4 a police car then one year be tazzerd but six officers. And punch a window which are everyday reminders that I have bipolar as if the pills aren’t enough.

    The funny thing the doctor said to me in my last call up was that I don’t seam to show any singes or been ill the majority of the time which is was i aways say but when i end up in hospital i will be there for a few months on a section been freaked out by how undwell every1 else is as if the punishment for been a idiot for one hour or less.

    Isn’t mental health brilliant, no its an A***.

  24. Just an update.

    I’ve been on 800mg Epilim for nearly 8 weeks now and I am starting to see an improvement in my mood cycling, in that where I thought I was trapped in a state of minor depression all the time now appears to be more even this is thanks largely to an increase in dosage for the anti-depressant Pristiq, and my cycling seems to be far less dramatic than when I first started the Epilim. On a side note however, I’ve noticed that issues I previously had with psychosis are now more noticeable and vivid, I will be talking to my psychiatrist next week about increasing the dose of Risperdal from 1mg per day to 2mg per day to see if I can get that sorted.

    Sleep wise, I get around 5 to 6 hours sleep on average which isn’t to bad considering I was getting far less than this before the Epilim.

  25. Todd,

    I’ve had years of mental illness and been in and out of mental hospitals. Initially I was on a series of drugs, namely Risperidone, Sequel, Lexapro, Lithium and Epilim. During my manic stages, Sequel is the drug that my doctor prescribes, however I feel that’s to make me sleep as I don’t sleep for days on end and spend a lot of money on ridiculous things. I was on Lithium, but this drug made me gain so much weight my doctor decided to change it to Epilum. I now take 600mg of Epilim in the morning and 600mg at night. I feel much better and do not experience any side affects. I’m also on 20mg’s of Lexpro as well. I still get depressed and emotional however that maybe last for 6 weeks rather than 6 months, which was the norm. For me Epilim is my drug, I’m totally of control with my highs and lows. My Bi Polar has caused problems in my family, which we work through on a daily basis. People don’t understand mental illness. To add to all this, I’ve just been diagnosed with Transverse Myelitis.

    • Hi Todd,

      Sorry to hear you have been diagnosed with Transverse Myelitis. I have had Bi Polar for years and like you been in and out of hospital. I have been on 20mg Olanzapine for years, also 40mg Valium, 200mg chlorpromazine, 200mg Lamotrigine & Zolpidem. Been on 600mg of Serequel before but didn’t like the feeling of a chemical straight jacket. Also been on Risperidone, well most of them really. Tend to always be manic rather than depressed, can go days without sleep, smoke like a chimney so maybe I am being fuelled by nicotine (tried to give up but can’t succeed) like you my bi polar has caused problems in my family and I’ve spent shed loads of money, many times. I have read everybody’s experiences of Epilim and I am terrified as I am being pushed into going onto Epilim due to another recent manic episode, even though I’d been taking my meds? I find it scary changing meds, don’t know if I should stand my ground and say no to Epilim? I have never been on a forum before but it really helped reading your stories, so thanks everybody for that.

      • Epilim for me cures all, if im off it im manic as and cant definitely notice the patterns, its like I am a speed addict, also spend a fortune on things i dont need, just commit to the task and get it done, its stupid. But on epilim i dont have any of these issues, also no bouts of rage which is my main issue. I take seroquel at night, to sleep because i cant, but yes i understand what you say its like a chemical straight jacket hey, ahh, and the first time you take it! wow, fairly used to it now.

        Definitely try epilim, its weird, it doesnt feel like youve taken anything but all problems go away,and return badly when you stop, thats how i noticed its affects.

  26. Im currently on 300mg seroquel and 500mg epilim, but i was on 2000mg epilim and 800mg seroquel a few months ago, quickly built up a tolerance and could hardly sleep once I got the tolerance to the high doses. Stopped taking everything, the withdrawal was so bad, went psychotic even though I’d never had any symptoms of psychosis before, ended up sectioned in the psych ward, didnt end well. Think the dose is right now though, pretty stable.

  27. Interesting. I went on this site as my son is on Epilim 500 ( 2 at night). He has Asperger syndrome and is quite obsessive. He is also on escitalopram 20mg and was on Olanzapine 10mg. Since coming off the olanzapine he has all the symptoms of ADHD as well as being aggressive and irritable most of the time. I am wondering if this is partly the Epilim and escitalopram interaction rather than the stopping of the olanzapine. What do people think?

    • Have you tried dexamphetamine? Sounds very similar to myself and very similar symptoms to myself. I take epilim, and seroquel to sleep, doctor says seroquel is similar to olanzapine, but olanzapine is stronger, personally i can take as many olanzapines as i like without any affect, does nothing for me. but seroquel works well, i take it at night to sleep.

      Umm, yes regarding the dexamphetamines, I was on them when i was 13 and it didnt do anything for me really, perhaps i didnt take enough, I think i had one during recess, and not one before school, which i should have been taking one every 2 hours.

      I take 1 in the morning usually, one at lunch, maybe one later if needed, it just balances me completely and takes away all of my obsessive issues, my anger issues, i can concentrate and i feel like a normal person.

      Highly recommended for a try. But watch loosing appetite, youll need to force yourself to eat 🙂

      Good luck, J

  28. I was on Lithium for 27 years and my endrochronologist advised me that this had caused kidney failure. Six years ago I switched to Epilem which breaks down in the liver not the kidneys. My bipolar is well managed – I have a bright, positive attitude on life. In June 2014 I attempted to vary my Epilem dose but became depressed and suicidal with only a moderate variation. I reverted to the former strength. I am stable and happy on Epilem even if I experience photosensitivity and the occasional skin rash. I haven’t been in a mental hospital for years!

  29. Hi all, I am currently coming off epilim . I was started on 1000mg twice daily about 5 years ago, after coming off zoloft and suffering serotonin syndrome. I am diagnosed with bipolar and various other mental health disorders. I also take 20mg of lexapro. After still so many ups and downs, 2 suicide attempts, I asked to be reassessed. I was so lucky, I found the right psychiatrist, he asked all the right questions, (what a relief) he is an expert in Adult ADHD. He said he sees so many patients diagnosed with Bipolar who actually have ADHD. ADHD does have a very depressive side and is not always hyperactive. I have now started taking Dexanphetamin and my whole life has turned around. I go to work and function fully all day, I eat and sleep, wake felling refreshed. All those years my whole life has been out of control one way or another, from being the uncontrollable kid in the class room, to being so depressed.
    I wish everyone luck on there journey, and don’t be scared to question your diagnoses and medication if it does not feel right to you. You are the one that matters.,

    • Lisa,

      An interesting post…..thank you.

      I have had mild epilepsy for about 30 years – I got it after a severe dose of shingles on my head. For a period of time (a few years) I took no medication. Then, because of the frequency of my attacks increasing (too much computer with the advent of the internet, alcohol, etc…) I was put on 200Mg Epilim a day. That worked reasonably well, for a while.

      Then, about 8 years ago, I was upped to 1000Mg Epilim per day. This is where things started to go awry. A few months after the increase, I had my first Bipolar ll/Hypomania type episode. For a few days I was feeling really great – not manic great, but probably a bit over confident. Then, after about a week, I had an absence (not a Grand Mal) followed by a bad migraine. The after effects were dire. Severe panic attacks, blubbing down the phone to anyone who would listen, head-in-the-over depression, the full nine yards.

      Over time, and with counseling, I have learned to mitigate the effects. No alcohol whatsoever, no computer after 6:00, exercise, stress management etc…etc.. However, this only mitigates the effect. The pattern is this….

      About every 6-8 weeks, I go through the BP ll – like phase. Overconfidence (“Wow, nothing has gone wrong for almost two months, I must be doing something right.”), absence, headache/migraine (though not always) and then 2-3 days of depression. I cannot break this cycle.

      I know that this is highly genetic. My father’s youngest sibling (my youngest uncle) always suffered severely from stress. He dropped dead of a heart attack at 56, coincidentally, the age I am now.

      I am the eldest of both my siblings and all my cousins.

      And of the new generation, the youngest (my youngest nephew) has been diagnosed with autism. So, youngest, oldest, youngest across three generations have issues.

      I did really badly at school. I have zero self-esteem. I have been reasonably successful at what I do (self-employed photographer), but my condition has cost me clients, friends and relationships. I would say I am above average intelligence – but, I don’t have the self-esteem to capitalize on that.

      I have sometimes wondered about some sort of autism spectrum issue, and that is why I find your post interesting.

      • Jpeginaroundhole, at least your post gives some hope. Talking about no alcohol, no computer after 6pm and regular exercise is at least a recipe for a more balanced life.

        One thing you touch upon is the old Nature/Nurture viewpoint of the human condition. I am now in my 60s and I think there is a lot to be said for the “Nature” view of life, in that we inherit certain genes from our parents and it can be difficult to overcome the dud ones.

        As my doctor keeps telling me, one has to look for the positives in life and encourage them: good friends, enjoyable activities and avoiding the negative. He recently took exception to me reading “A Little Life” by Hanya Yanagihara, and I can see why. The novel’s subject matter is depressing and at 720 pages long, it can give one more than the blues for weeks after finishing.

        PLEASE if you have even slight depression, avoid “A Little Life”. It could literally kill you.

        So there is another thing we need to regulate: the stories we read and watch.

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  32. I have written here before and this post is by way of update. I am still off Epilim, but due to a bad episode that affected one of my family, I was prescribed Zoloft some 4 months ago.

    It has helped, as has 2 other lifestyle changes that have been mentioned by others: MILD EXERCISE and DIET.

    Swimming is my activity of choice, due to severe joint pain and currently I am swimming some 20 laps of a 50m pool, 3-4 times a week. It definitely helps to improve my mood and to keep it consistent.

    The other factor is diet. I was slowly losing weight over 12 months, however, a friend suggested that I try an ELIMINATION DIET for 2 weeks. Note, this is not to be approached lightly, as it requires both discipline and organisation to maintain the new style of eating. If anyone wants details, let me know.

    The result was a weight loss of 4 kg over a 4 week period. However, the major change was the way my tastebuds reacted. The plainer foods I was using began to taste better than I could ever remember.

    I am beginning to believe that, with the help of my doctor and changes that I am implementing in diet, my mood is becoming more positive more often. I still find I have to strongly self-monitor, because I do appear to be over-the-top sometimes and I am learning to “pull back” or keep my mouth shut when that happens.

    I am beginning to believe that the Western Diet is very bad for all our health: physical and mental. However, I offer this as an observation. You should not alter your meds, until you consult with your doctor.

  33. I narrowly avoided taking Epilim, after my doctor suggested it. I did some research and read about the permanent hair loss. No thanks, I’ll try something else.

    • Hair Loss from Epilim?? Who knew? Thanks for sharing. I thought my hair loss was due to my kids and the fact that I keep tearing my hair out, thanks to their behaviour. Yes they are over 21, just. My plans to grow a mullet will come to nought.

      Try avoiding sugar in your diet. It helps. A new film “That Sugar Film” is informative, frightening and entertaining. Maybe people can download/stream it???

  34. I had to be taken completely off Epilim after it was found to have given me a severely fatty liver with borderline liver damage.

    I recommend avoiding this drug, it’s just not worth it. Find an alternative, I recommend diet and exercise plus a reasonably minor mix of antipsychotic and antidepressant medication. For mood stabilisation I found that L-Tyrosine and Acetyl L-Carnitine have helped me – mind you I don’t suffer anywhere near as badly as others thanks largely to my Asperger’ Syndrome.

  35. My 5 year old daughter is on 600mg a day for her Absence seizures not only is she still have seizures sometimes up to 10 Day but I’m worried about side effects and long term effects on her at such a young age am I damaging her before she even starts school!!!

  36. hi I have been on epilim since I was 10 years old and I have put on 6 stone and I have not had a seizure since I was 20 but feel down in my self

  37. As my psych told me a long time ago, Epilim was originally prescribed as a treatment for epilepsy. Its use in bi-polar and depression is more recent. Though I estimate it has been used in bi-polar for about 10 years now.

    I have written here before about our Western diet. Although I have fallen into bad habits sometimes, I know what I have to do to improve my general health and that is to eat and drink more healthily. And to do moderate exercise.

    At Present, I am off alcohol and my diet attempts to avoid sugar and other bad things.

    • I have been reading a lot about the positive effects of diet and exercise on the body. I have really noticed that certain foods can either increase or ease my joint pain. Another interesting topic I have been reading about is how some mood ‘disorders’ can sometimes be a result of one or more traumatic events or constant stress in a person’s life. The trauma may be trapped and buried in a person’s body/psyche and presents itself in labile emotions/pain. I find this fascinating and intriguing as many doctors will simply prescribe medication as if that is the only way. This may help, especially initially as it can bring relief to cope with suffering, difficult feelings/thought, but I wonder if getting to the root of the problem will help more in the long term. A professional who really listens and helps someone to sift through their difficult feelings and different circumstances, coming up with ways to create a lifestyle that respects the whole person. It would be good not to have to worry about side effects of medications.

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  39. Oh dear, I accidentally came across this forum when trying to follow up on a friend’s suggestion that Epilim may seriously be responsible for my hair going from lustrous Shirley Temple curly for the first 64 years of my life to thin, straight & very weak strands that are falling out constantly as I brush or wash it…. this week I am having what’s left of it shaved back to about a 3 or 4 and wearing turbans at home and wigs to go out whilst I attempt ( with my Dr’s approval) to cut back the 1000 mg of Epilim twice daily I’ve been taking for Bi-Polar for the past eight years.

    I have just read NOIMNOTOK’s post in regards to having researched this drug & didn’t want to take it because of the permenant hair loss !!!!!

    I am now a 65 year old grandmother who has always taken great pride in my appearance, even when I was diagnosed with Bi-Polar at 56 and put on a combination of an abundance of mood stabilisers and anti depressants which resulted in suicide attempts, hideous side effects and numerous stays in hospital until I was put on Epilim & Efexor and suddenly simply became kind of zombiefied and unable to maintain my house to my usual standards which has become so embarrassing that I prefer to meet people out for coffee etc… rather than invite them to my house.

    I frequently go for days on end where I simply stay in my pj’s in bed, only getting up to go to the fridge, pantry or the loo even though I am aware that there is housework & gardening being badly neglected, I simply don’t have the energy to do it. But if it is essential that I leave the house, I make sure I am showered and in my nicest colour coordinated clothing & accessories, makeup spot on and now tragically with my hair going straight and falling out, I am feeling so old and haggard and afraid that if it gets worse (and there’s no sign of it getting any better) I am going to crash and burn … a girl’s hair is her crowning glory … no matter her age.

    So I would really love it if anyone else has suffered from this problem and has any suggestions on alternative medications both to counteract the hair loss and the 25kg weight gain over the past 8 years … the illness itself is hard enough to deal with, but when it comes with such ugly physical changes too, it’s definitely somewhat more trying.

    Bless all of my fellow sufferers and may you find peace and comfort in your hearts and heads each day ✨🙏🏽✨

    • Jill Byrne, I have been going through mild ups and downs since my 20s. And on various meds since my late 40s, with mixed results. (Now in my 60s.)

      However, I came across William Glasser talking about Choice Theory, as a means of establishing better relationships in our lives and he got me thinking. He also has an opinion about psychiatry which is a contrast to traditional thinking. I am including a link to a brief talk he gave https://www.youtube.com/watch?v=AghOT3oCaM4 .

      However, depending on where you are right now, do not suddenly stop taking medication. You should be able to research Glasser’s ideas for yourself and discuss with your therapist. If therapist is hostile, maybe time to change therapist.

      Trying to implement Glasser’s ways of relating are having benefits for me, particularly in my close family. Another benefit for you Jill is mild exercise, whatever you choose. But you have to plan to do it in your week and carry out the plan. You should see a lift in mood within 2 weeks.

      {This post is in case you do not get the updates}

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  42. I need a therapist but can’t be bothered. I need pathology but can’t be bothered. I take 300mg of Effexor and 30mg of Avanza daily. I take epilim as required but I’m tired of needing it I’m tired tired sick and tired!

  43. Hi jinnah,

    Thank you for your article, and your candid assessment of Epilim or sodium valproate.

    I am also a #Bipolar currently on prophylactic treatment with Epilim 400mg tds or 3 times a day.

    As you mentioned, it works well.. to stabilize and maintain our moods.. But doing too good a job till we sink into that mini depression !!

    I call it going back into the rut, where we just can’t anything else extra that we could have done !!

    But yet.. Epilim is crucial for me, to prevent me from ascending to manic heights when provocation comes.

    And equally vital is family or spouse support !!

    Cheers and Well Wishes !!

  44. How do you stop the weight gain from Epilim I am on 1500 mg at night along with 10mg Saphris at night for Bipolar, i eat 2 2 small meals a day and excercise 3 times a week. i seem to be putting on a kilo a month on and so far have put on 12 kilograms in 12 months. I am at my wits end.

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