The drug sodium valproate (epilim)

[paul80]

Does anyone here know how this drug works and maybe help me counter the negative side effects of it?

It makes me feel really sleepy and fatiged from the moment i wake up, whereas when i'm not on the drug i usually feel better in the morning but run out of energy by mid afternoon and need to go to bed.

The weird thing is it actually gives me a very deep long sleep, im not sure if that has anything to do with it.

It seems to be especially bad for brain fog and memory problems.

 

[raghav]

It is an AED (Anti epilepsy drug) and first generation. It is very effective for seizures but will make you extremely drowsy, sleepy and feel like a zombie.

From google
What is sodium valproate used for?
Valproate (VPA) and its valproic acid, sodium valproate, and valproate semisodium forms are medications primarily used to treat epilepsy and bipolar disorder and prevent migraine headaches. They are useful for the prevention of seizures in those with absence seizures, partial seizures, and generalized seizures.

The side effects list is huge.
Common side effects

• stomach pain, feeling or being sick (nausea or vomiting)
• diarrhoea.
• dry or sore mouth, or swollen gums.
• shakes (tremors) in a part of your body, or unusual eye movements.
• feeling tired or sleepy.
• headache.
• weight gain.
• thinning hair, or changes to the colour or texture of your hair.

It also affects your liver !
Neurologists prescribe it for refractory (resistant to other AEDs) epilepsy. It is quite effective but will keep you sleeping most of the time.

I dont know for which purpose your doctor has prescribed it. It is better to tell your doctor that you would like to try other alternatives. We now have 2nd and 3rd gen AEDs. Valproate is stone age drug ! Trust me. I am an epileptic and I have tried all the AEDs except valproate because my neuro simply said a big NO when I said I want to try it.

 

[YippeeKi YOW !!]

Hi @paul80 , I've been wondering how you were doing.

I assume a Dr prescribed this to ease reactions to quitting something else he probably prescribed.

While it's not a benzo, technically it's an anti-seizure drug, as @raghav noted above, it acts on the same primary neurotransmitter and receptor, the GABAa. It increases GABA by blocking the re-uptake of it in the brain, thereby keeping more of it in action, as it were. In effect, I think that it may be similar to a benzo in that it functions as a positive allosteric modulator.

I'm guessing here, but the effects of this could possibly be similar to a benzo eventually, in that, like a benzo, it interferes with natural production and utilization of your own natural GABA production, and it's possible that when you stop it, or try to taper off, the side effects would be similar to quitting a benzo.

It's deep, long sleep effect is, I think, possibly due to valproic acid's interruption of specific electrical impulses to parts of the brain in its function as an anti-seizure drug. That, and it's activity on GABA, would also explain the bad brain fog and memory problems. While GABA relaxes, calms, and soothes you, it's its often disruptive evil twin, glutamate, that produces learning and memory (when it's not driving you up the wall).

Valproic acid is also subject to cross-tolerance effects, tho it itself doesn't produce that, but it is acted on by other drugs. cross-tolerance wise..

It might also induce irritability, agitation, or other personally non-normative behaviors, and cause depression and/or suicidal tendencies in some people.

If your Dr sold this to you as an easy and harmless assist, I'd be inclined to read the small print ....

As always, sending you empathy and useless, but sincere, hugs ....

PS .... I'm beat to hell right now and about to do a little lie down, so I'm hoping this makes sense. If not, hit me back, and I'll do my best to jump start my three brain cells and clarify anything that I can ....

 

[paul80]

Yeah sorry, I was diagnosed with epilipsy, as i was having absense seizures. should have mentioned that.

Hi @YippeeKi YOW !! , how are you doing? i'm still not off the clobezam btw but reduced it to a low dose (10mg), and my doctor seems fine with the dosage.

That's the strange thing i thought, that benzos don't have the same negative side effects as this drug even though they both stimulate GABA.

The doctors said the side effects would probably go away in time but i started in febuary and they didn't go away by now. i just tried to stop taking them a couple of weeks ago and had a horrible reaction, so went back on a low dose.

@raghav i tried lamotrigine first and that had similar side effects, (although that was over a year ago and i didn't try it for long), is there any other AED that don't have such bad side effects? what ones do you take?

 

[YippeeKi YOW !!]

That's the strange thing i thought, that benzos don't have the same negative side effects as this drug even though they both stimulate GABA.

They do it in different ways, which could explain the different effects.

Congrats !!! Getting that crap even down to a low dose ain't easy ....

i just tried to stop taking them a couple of weeks ago and had a horrible reaction, so went back on a low dose.

That was my assumption, based on the fact that, benzo or no, it worked the same show-horse.

I have almost zero knowledge of other anti-seizure meds, or at least any that I'd suggest, even tho DB is also an epileptic, or at least right now, a lapsed epileptic. I got him on supps and a different eating plan 3 or 400 years ago, when we were first living together .... I've often wondered if he decided to propose based on that improvement .

Are you only dealing with absence seizures, as opposed to all the other equally dismal possibilities?

 

[paul80]

Just absense seizures except one day, almost 2 years ago i had three big seizures and was in hospital for 2 weeks with kidney failure, that's what led to me finally getting diagnosed with epilispy.

You husband doesn't take any epilipsy medication? My doctors warn me so much about it. "The absenses could be damaging your brain", "you could die if you have big seizure".

And it scares my partner so much since the big seizures i had, i feel guilty not taking any medication for it. I can just about tolerate the lowest dose and it seems to stop the absenses even though my Neuroligist says i should be on a dose about 3x bigger, but that's not happening.

 

[YippeeKi YOW !!]

You husband doesn't take any epilipsy medication?

None.

He was on Dilantin for, like, ever (abt 15 years), and it screwed with him in major, major ways. The after effects of it, even after years of being off it (absent minded-ness, occasional difficulty focusing and processing info), are still with him.

Drs ignored him when he raised these issues, so he slowly titrated off on his own. It wasnt pleasant or easy.

My doctors warn me so much about it. "The absenses could be damaging your brain", "you could die if you have big seizure".

As I stated above, the damage that the medication did to him (he was much worse when he was on it) is massive, and after all those years, probably irreversible. And Drs who use dire threats of unproven consequences to keep their patients in line draw my particularly raging contempt.

If the Dr said the absences " ..could be damaging your brain ...." my first question is, if they dont know for sure, WTF are they doing prescribing medications that have lengthy, proven profiles of dramatic brain ad other damage against a vague possibility of something that they can't back up in any meaningful way?

And yeah, clonic-tonic seizures are awful, and probably damaging in areas that Drs still have neither knowledge, or any hint of knowledge of. But absence seizures do not necessarily progress to tonic-clonic or myoclonic seizures, with only 1 out of 4 or 5 patients making that transition. Still, it's not the dice I'd want to roll.

I think a good place to start is a sit down with your Dr, and a firm, focused discussion of the range of side effects that you're suffering, along with the possibility of a milder form of medication. They've put you on the strongest possible medication, usually reserved for severe CT seizures. Absence seizures are a much milder form of epilepsy, and unless they can prove that the stronger medication precludes ANY possibility of moving up the chain to CT or MC seizures (and I'd be surprized if they could), there's not a lot of justification for killing a gnat with a nuke.

This is not to trivialize absence seizures. They're frightening, destabilizing, and debilitatingly awful, always freighted with the threat of moving up to something worse. But they're not the worst the epilepsy has to offer.

What else have they put you on previously to deal with this .... my memory is intermittent, and right now it's refusing to cough up the old info from you, so please to forgive, yes?

I can just about tolerate the lowest dose and it seems to stop the absenses even though my Neuroligist says i should be on a dose about 3x bigger, but that's not happening.

Stick to your guns, you're absolutely right and your neurologist is .... uh .... totally less right.

I'm always staggered by the casualness with which apparently unconcerned Drs deal out DEVASTATING meds, frequently in wildly inappropriately high dosages, whether benzos or Z-drugs or anti-seizure meds, all of which have profound long term consequences often even on short term doses.

Stand your ground, fight your corner, know that while Drs may not mean to do harm, they frequently do, and know that no one knows you better than you. Keep applying to the threads on this site that deal with your issue or even versions of your issue for more input on other, potentially less damaging and equally helpful meds.

Stay strong .... it's a tough battle, but it's winnable, and you're doing all the right things ....

Onward and upward !!!

 

[paul80]

They only tried me on Lamotrigine before this drug, but at that time the epilipsy hadn't been proven by the EEG (48 hour at home), so i wasn't convinced i even had it at that point. I didn't like the effects of that drug either but i can't really remember if it was much better or worse than this one.

Sorry to hear about your husband's permanent damage. How did you help him avoid having seizures since he came off the drugs?

The absense seizures didn't really bother me because i wasn't even aware of them. It really stresses out my partner though.

I agree with what you said about doctors. I think they are doing their best but i just don't trust that they know what they're doing a lot of the time. The problem is it's really hard to research and make decisions on these things when your eyes, brain and memory are so exhausted.

What milder forms of drugs are there? i tried googling it but couldn't find anything.

 

[YippeeKi YOW !!]

How did you help him avoid having seizures since he came off the drugs?

Thru careful spplementation, with an emphasis on particular nutrients and chemical substances, usually in herbs and highly specialized supps, along with a sane, balanced diet and my loving and pretty tasty home cooking. To be more specific would require that I drag myself halfway across town to our family's storage units, grind thru several decades of everyone's 'treasures', and hope to find it there. Since dragging myself halfway to the bathroom is sometimes a good hour's work, this doesnt seem like an executable proposition.

The problem is it's really hard to research and make decisions on these things when your eyes, brain and memory are so exhausted.

Since your partner is involved in all this, could they possibly do the research for you, or at least share the burden?

What milder forms of drugs are there? i tried googling it but couldn't find anything.

As I said above, I really haven't kept up with newer anti-seizure meds. This is another area where your partner might be more than willing to pitch in and help, since they're concerned and clearly care about you .... its also why I suggested a serious, focused sit-down with your Dr, explaining to him/her what you dont like about the valproate, and what he can suggest that's less side-effect heavy and possibly friendlier to your particular system, since we're all different and will react differently to medications....

This is a concept as foreign to most Drs as a spoon is to a duck.

I'm sorry that I cant be more help, and believe me, I understand the difficulties involved in trying to research, read, absorb, fully comprehend, and then evaluate the pros and cons of multiple potential drugs, supps, herbs, minerals, treatment modalities, etc etc etc. Been there and done that and still am. On bad days, its like being handed several pages of tiny print in cuneiform.

 

[paul80]

The epilipsy pills i take are slow release so i don't think you can taper off them as you can't split the pills. Might have to use benzos to help with the withdrawl and then taper down from them again.

My partner is ill too and struggles enough keeping the house running. I'll see my neuroligist in about 2 months and i'll try and get her to suggest something milder though.

Anyway, i appreciate the advice. Thanks.

 

[YippeeKi YOW !!]

My partner is ill too and struggles enough keeping the house running

Oh crepe, Paul .... I'm so sorry ....

If I can dredge up any deets on what I did to improve DB's condition and the tapering of the Dilantin, will post them here, with the usual caveat that I'm not a medical professional of any conceivable sort, and just had to reserach and plod my way thru to stuff that helped him and might possibly help you ....

If I'm remembering right, part of it was experimenting with acetylcholine, which I believe helped ..... this is why I need all those old notes ... memory is deceiving ....

Damn. Just .... damn !!!

I'll see my neuroligist in about 2 months and i'll try and get her to suggest something milder though.

I'll keep a good thought and an eye on this thread .... really hoping she's responsive.

Did benzos help the absence seizures at all?

Anyway, i appreciate the advice. Thanks.

You're very kind. Advice, generally, is worth exactly what you pay for it or slightly less ....

 

[paul80]

The Xanax didn't, the neuroligist said it was a bad drug for this because of the very short half life so your brain was constantly changing daily (if that makes sense). when she put me on the 20 mg of clobezam I felt a lot better and my partner never noticed any seizures. Normally she would notice 1 or 2 per day.

 

[YippeeKi YOW !!]

The Xanax didn't, the neuroligist said it was a bad drug for this because of the very short half life so your brain was constantly changing daily (if that makes sense).

Xanax is one of the strongest and most additcive benzos, precisely because of its short half life.

I'm wondering why she didnt try you on the old tried-and-true, Diazepam--Valium ..... wow, now my keyboard is going nuts and none of the symbol keys are printing what they should .... a paren symbol turns into an equals symbol .....will try to finish this anyway ....

As a neurologist, I would have thought that neuro 101 would have covered the fact that Valium (can't use the apostrophe key, either) .... AHA !!!! My keyboard was somehow switched to French .... back in business ....

Where the flock was I .... I would have thought that she would have known immediately that Xanax was a crap choice, and that if she wanted to try benzos to reduce or even eliminate your absence seizures, Valium, with a half life ranging between 24 and 48 hrs and a cumulative effect (so dose builds upon dose, keeping you stable for a much much longer period of time) would have been the textbook choice. It was created in part to replace barbiturates as safer form of seizure med.

But then, pharma doesnt pay out for generic diazepam, or probably even the more expensive Valium, but does for newer anti-seizure drugs. Generously.

If you approach your neuro on this, make it clear to her that, if your insurance covers it, you need to take VALIUM, not the generic diazepam, due to the variations and fluctuations possible in the generic, not helpful if you're taking it as a seizure med.

I think you know by now that I'm not a big fan of casually prescribed benzos, and the trail of damage, pain, and death they can leave in their wake, but there's a difference between casual prescribing (like, say, Xanax for seizures ), and carefully considerd use of medication for a specific purpose, one that it was originally developed to deal with more safely than the then-availble alternatives.

the 20 mg of clobezam I felt a lot better and my partner never noticed any seizures. Normally she would notice 1 or 2 per day.

I can't remember why you stopped the clobazam .... was it side effects?

Clobazam has a long mean half life, ranging from 36 to 44 hours, and the metabolite may last even longer in your body, up to 82 hours. It's possible you might be able to tolerate it better on smaller doses?

Your neuro baffles me. Well, not exactly accurate ... pisses me off. But then I have no idea what other things she might be dealing with in terms of your history or other meds you might need to take, so I should just shut up.

Still, Xanax for seizures seems pretty .... lame. You'd be in tolerance withdrawal before I could shriek "What the FLUCK was she thinking ???!!!???"

 

[paul80]

No, sorry, my mistake i thought you remembered the benzo thread.

I'm in the U.K and was initially taking xanax for anxiety bought on the dark net about 3 years ago, i didn't know about the epilipsy then. Our NHS doesn't use xanax at all.

I got addicted to it which i tried to avoid, i told my doctor and that, along with the epilispy, made her put me on 20mg of clobezam but i had to taper it down while increasing the epilim drug, i had no choice. I don't know if they will make me taper the 10mg down to zero but at the moment they are letting me stay on it.

They told me people become tollerant to the benzos and you need to keep taking more, that's why they don't use them for epilipsy. I don't know if that's true for everyone, all i know is they worked good for me. 10mg of clobezam i'm on currently is very low though, i think equivelent to about 5mg of valium.

It's good having a free NHS if you're poor here, but doctors here are more restricted by rules on what they will allow. You have more freedom of choice in the U.S i think.

 

[YippeeKi YOW !!]

I don't know if that's true for everyone, all i know is they worked good for me.

Yeah, I went into this in tedious detail in the benzo thread ..... generally speaking, it's a pretty predictable reaction, tho the time span before it starts to kick in is different for everyone .... one person I read about has been on Valium for 15 years without having to raise their dosage, but you know, internet info, unsubstantiated ....

Clobazam is a benzo, so not sure about your Drs logic here ..... and if you ever decide to cycle off Clobazam, you'll likely be titreated down on Valium/diazepam ....

You have more freedom of choice in the U.S i think.

Yes, balanced by Drs who are more wedded to the magic of personal income streams ....

Sorry for the jaundiced opinions ....