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Last year, after several repeated blood tests over years with elevated proteins etc, an ultrasound showed NAFLD (Non Alcoholic Fatty Liver Disease)

 

GP mentioned briefly that epilim (Sodium Valproate/Depakene) can cause/complicate this.

 

I take it for complex partial/focal seizures. I don't currently have a neurologist, since nothing has changed in several years.

 

Just thinking about my options, and seeking thoughts before I ask doctors. I started this med about 2 decades ago. I was working full time, and getting around town by bicycle, including riding down the busiest road in my then state. So absence seizures were legitimately posing dangers. I'm on disability, and don't ride now

 

It was also raised at one point, to counter what turned out to be SSRI related S/E

 

So, I'm wondering about lowering, or changing for something less brutal on the liver, or even trialling slowly coming off it all together?

 

Any thoughts appreciated.

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saw GP today

 

he didn't much like this idea. But wrote a referral to a neuro to discuss it further anyway

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Neuro got back to me. Appointment booked for 8th May. 

 

Also saw GP today, who had spoken with pdoc, who said the valproate was also helping my unipolar SZA. And reinforced that he doesn't like the idea. But said talk to neuro. 

 

I'm sure if neuro gives seizure clearance, there are far less sucky mood options than this. 😂 

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On 2/7/2020 at 8:42 AM, DogMan said:

I take it for complex partial/focal seizures. I don't currently have a neurologist, since nothing has changed in several years.

 

On 2/7/2020 at 8:42 AM, DogMan said:

So absence seizures were legitimately posing dangers.

Just wanted to point out that complex partial (which are focal seizures) are very different from absence seizures (which are generalized seizures), and the potential medical treatments for them differ (while having some overlapping options).

I'm not sure what all is available to you in Australia, but I'll list what is available in the US and maybe that could be of help to you? Some will have mood benefits. I'm assuming by "unipolar SZA" you are referring to "SZA depressed type," am I correct? If this is so, I don't see how in the world valproate can help with depression... It is primarily used for mania in the US, but I have noticed in many, many other countries around the world, it is used far too often to treat depressive symptoms, which makes no sense to me! It worsens depression!

Here is a list of seizure medicines:

Narrow-spectrum AEDs

  • carbamazepine: used to treat seizures that occur in the temporal lobe. Also help treat secondary, partial, and refractory seizures. (Also possesses mood stabilizing properties, predominantly anti-manic, but potentially antidepressant properties as it is a serotonin reputake inhibitor and serotonin releasing agent)
  • eslicarbazpine acetate (Aptiom): partial-onset seizures
  • ethosuximide: all forms of absence seizures
  • gabapentin: partial seizures (milder side effects generally)
  • lacosamide (Vimpat): partial seizures (has serious side effects such as PR prolongation, AV block, ventricular tachyarrhythmias, atrial fibrillation/flutter, syncope, agranulocytosis, and depression)
  • methsuximide: absence seizures (used when other treatments don't work... slows down the motor cortex, which slows down your movements)
  • oxcarbazepine: all types of focal seizures (may possess some mood stabilizing properties like carbamazepine, but it is heavily debated, may also possess anxiolytic properties)
  • Fycompa (perampanel😞 complex, simple, and refractory seizures—this drug is highly likely to cause life-threatening psychiatric and behavioral side effects (including suicidal ideation, homicidal ideation, psychosis, aggressive behavior, hostility, and depression exacerbation)
  • phenytoin: complex, simple, and refractory seizures (may cause many serious side effects, but commonly also causes hyperglycemia and gingival overgrowth)
  • vigabatrin: refractory complex partial seizures—restricted distribution in the US due to serious side effects, including severe permanent vision loss, suicidality, SJS, brain vacuolation, neurotoxicity, depression, and "others: see package insert")

Broad-spectrum AEDs (if you have more than one type of seizure, prevent seizures in more than one part of the brain whereas narrow-spectrum AEDs work in one specific part of the brain)

  • felbamate: nearly all types of seizures in people who don't respond to other treatment—used only when other drugs have failed, restricted distribution in US due mainly to hepatotoxicity requiring liver transplant
  • lamotrigine: may treat a wide range of epileptic seizures—titration must start low and go slow to avoid SJS, commonly causes benign skin rashes (very commonly used as a mood stabilizer in bipolar disorder for depressive episodes as it possesses some antidepressant activity and stabilizes "from below" instead of "from above" like almost all other mood stabilizers do)
  • levetiracetam: generalized, partial, atypical, absence, and other types of seizures... focal, generalized, idiopathic, or symptomatic epilepsy in people of all ages. May have fewer side effects than other AEDs (does have the potential to cause severe depression, suicidality, and what is lovingly called the "Keppra rage")
  • primidone: myoclonic, tonic-clonic, and focal seizures—metabolizes to phenobarbital, can soften bones and cause rickets and vitamin D deficiency (the latter of which is very common in many anticonvulsants)
  • topiramate: treats all types of seizures (can cause weight loss in many, severe cognitive symptoms that are dose dependent, kidney stones, metabolic acidosis, and taste distortion—may have beneficial or deleterious effects on mood depending on the individual)
  • zonisamide: treats partial seizures and other types of epilepsy (like topiramate, may also cause weight loss, cognitive problems though probably to a lesser degree than topiramate, kidney stones, metabolic acidosis, and taste distortion—is increasingly being used in bipolar depression as a mood stabilizer as it has been demonstrated to increase/enhance serotonergic and dopaminergic neurotransmission)

I left out a few that would probably not be advantageous due to side effects, but the ones I included that I noted had pretty severe side effects I included to warn you about in case your neurologist recommends them.

I hope this helps you!

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thanks @mikl_pls

 

hoping to trial no AED first. It is a really long time since i tried life without one. I honestly don't remember starting it all too well, but I remember the s/e were suckier than any other med i'd experienced

 

if that fails, your list will be handy

 

it IS a very effective migraine med, i'll give it that. on top of seizures

 

advice is generally if you are seizure free for 2 years, or up to 5 years for more conservative, then a trial off AED can be looked at. It's been 9 for me. I think. 

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a big part of it is that i am mostly certain that ditching epilim will improve my med compliance in general

 

i'm stalling now, have been for hours because epilim causes nausea and crisis level hunger about 30 minutes after, then crash for poor sleep

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So @mikl_pls definitely has WAY more experience than I do w AED usage for epilepsy because.....you know....I don't have epilepsy and he does lol. But I will narrow down to a few to draw attention:

On 3/19/2020 at 10:35 AM, mikl_pls said:

carbamazepine: used to treat seizures that occur in the temporal lobe. Also help treat secondary, partial, and refractory seizures. (Also possesses mood stabilizing properties, predominantly anti-manic, but potentially antidepressant properties as it is a serotonin reputake inhibitor and serotonin releasing agent)

If your gdoc thinks that valproate contributes positively to your SZA depressive tendencies, then with research, I'm sure he would find carbamazepine to be an acceptable solution because it is quite calming and has been shown to have antidepressant effect in many models.

From the original list, I did eliminate oxcarbazepine, which takes carbamazepine and adds an oxygen atom to the chemical structure. Carbamazepine breaks down into both a monohydroxy- (MHD) metabolite and an -epoxide metabolite. By adding the oxygen atom, oxcarbazepine produces the MHD metabolite, but it does not break down into the epoxide metabolite. While that epoxide metabolite does contribute to side effects seen with carbamazepine but not oxcarbazepine treatment, it does seem to contribute to therapeutic effects as well, which is why carbamazepine is generally regarded as acceptable for the treatment of bipolar disorder but oxcarbazepine doesn't show as much evidence/efficacy.

On 3/19/2020 at 10:35 AM, mikl_pls said:

ethosuximide: all forms of absence seizures

A lot of reading shows that this ^^^ guy is the OG Petit Mal AED. My cousin actually took this for absence seizures when she was younger. It's older though and comes with side effects.

On 3/19/2020 at 10:35 AM, mikl_pls said:

lamotrigine: may treat a wide range of epileptic seizures—titration must start low and go slow to avoid SJS, commonly causes benign skin rashes (very commonly used as a mood stabilizer in bipolar disorder for depressive episodes as it possesses some antidepressant activity and stabilizes "from below" instead of "from above" like almost all other mood stabilizers do)

Known to work for very difficult-to-treat epileptic disorders like Lennox-Gestaut and Dravet syndromes. Also solid for depression even in unipolar type.

On 3/19/2020 at 10:35 AM, mikl_pls said:

levetiracetam: generalized, partial, atypical, absence, and other types of seizures... focal, generalized, idiopathic, or symptomatic epilepsy in people of all ages. May have fewer side effects than other AEDs (does have the potential to cause severe depression, suicidality, and what is lovingly called the "Keppra rage")

The fact that it causes Keppra rage is disappointing because that is likely downstream of some positive antidepressant effect. Yet sometimes people get depressed on Keppra too. So who knows. However, it's definitely worth looking into because it's another one of those options that works where other things don't.

On 3/19/2020 at 10:35 AM, mikl_pls said:

zonisamide: treats partial seizures and other types of epilepsy (like topiramate, may also cause weight loss, cognitive problems though probably to a lesser degree than topiramate, kidney stones, metabolic acidosis, and taste distortion—is increasingly being used in bipolar depression as a mood stabilizer as it has been demonstrated to increase/enhance serotonergic and dopaminergic neurotransmission)

I keep this because @mikl_pls was stable on this for a long time and felt it helped with his mood stability as well.

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Looks like tegretol is even harsher for the liver, from my limited reading? 

 

Is lamictal a once a day med? 

 

Also, if someone could please read over my draft list for neuro, that'd be great. Appointment is 8th May. 

 

 

Elevated blood tests, dentist etc, epilim seems to come up often.

I used to read a lot. Haven't had the concentration on epilim.

Last seizure to my knowledge was 2011. Possible aura more recently, but ages ago.

Due to be reviewed in general.

Sedation.

I think I would be more compliant off epilim, since side effects suck. Evidenced by morning dose.

Other family members experience coming off AED or hearing their doctors view.

I'm hopeless with morning meds. Better at night

 

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Just reviewed the Australia PBS. Here's the listing of what's available to you:

Quote

barbiturates: phenobarbital and primidone

probably should stay away from these,

Quote

hydantoins: phenytoin

...and this,

Quote

succinimides: ethosuximide

it's an older one sir but it checks out, particularly for absence / petit mal seizures

Quote

benzodiazepines: clonazepam, nitrazepam

If you're concerned about drowsiness with valproate, then you probably don't want to go with benzodiazepines

Quote

carboxamides: carbamazepine, oxcarbazepine

these may be good for mood. Carbamazepine will mess with the CYP450 liver isoenzyme system but it isn't as much of a liver risk as valproate

Quote

fatty acid derivatives: tiagabine, valproate, vigabatrin

You're already on valproate which makes you too sedated, likely mediated via GABA, therefore the other two in the above category would likely be similarly sedating due to their effects on GABA. Tiagabine and vigabatrin are related to gabapentin (Neurontin) and pregabalin (Lyrica).

Quote

brivaracetam & levetiracetam: either will be less sedating than valproate and likely just as effective

gabapentin: likely will also be sedating but maybe more tolerable than the valproate?

lamotrigine: not as sedating and actually kind of activating in the beginning

topiramate: serious cognitive dulling with this one

lacosamide, perampanel, sulthiame, and zonisamide: don't know much about these by @mikl_pls will swear by zonisamide.

 

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Down from 1500mg to 1000mg for 3 months, then another appointment to evaluate lower again. 

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On 4/11/2020 at 6:12 AM, DogMan said:

Is lamictal a once a day med? 

It is generally taken in two divided doses when taken at or above 200 mg/day. If taking the ODT (orally disintegrating tablets) version, I've read it needs to actually be taken at least 3x/day.

It can, however, depending on what your neurologist or prescribing physician thinks about it, be prescribed as once daily in the extended release form (Lamictal XR). One neurologist I had swore though that even in the XR form, it needed to be dosed twice daily, and once when I was on 400 mg/day and was on XR, I just took 200 mg 2x/day anyway (or 2 in the morning, I can't remember...).

On 4/20/2020 at 11:00 AM, DogMan said:

https://www.mja.com.au/journal/2019/pbs-restrictions-epileptic-drugs-unsafe-and-outdated

 

About 2 weeks until appointment. Looked up lamictal here in Australia 

 

Screenshot_20200421_015916_com.android.chrome.jpg

I'm actually astonished that lamotrigine (Lamictal) isn't available without prescribing restrictions. I can't imagine why that would be unless it has to do with the cost of the medicine.

On 4/21/2020 at 7:56 AM, browri said:

You're already on valproate which makes you too sedated, likely mediated via GABA, therefore the other two in the above category would likely be similarly sedating due to their effects on GABA. Tiagabine and vigabatrin are related to gabapentin (Neurontin) and pregabalin (Lyrica).

Vigabatrin is the one that has the potential to cause severe, permanent vision loss as a side effect, as well as other potentially serious side effects. Just figured I'd mention that about that one in particular.

On 4/21/2020 at 7:56 AM, browri said:

brivaracetam & levetiracetam: either will be less sedating than valproate and likely just as effective

gabapentin: likely will also be sedating but maybe more tolerable than the valproate?

lamotrigine: not as sedating and actually kind of activating in the beginning

topiramate: serious cognitive dulling with this one

lacosamide, perampanel, sulthiame, and zonisamide: don't know much about these by @mikl_pls will swear by zonisamide.

As for levitiracetam, I have experienced the Keppra-induced suicidality and depression, and it is definitely not fun and is not easy to overcome (it doesn't go away easily by just stopping the medicine). Luckily I didn't experience the "Keppra rage."

Brivaracetam (Briviact in the US) is very similar to Keppra in structure and works pretty much through the same mechanism of action. For some reason they decided to schedule it in the US (but leave Keppra unscheduled?), citing that it caused euphoria in some people in the studies and thereby had potential for abuse (but just as equally has potential for dysphoria/suicidality as with Keppra).

The cognitive dulling with topiramate is palpable. Seriously, it is literally dementia in a pill!! It is a good AED, yes, but jeez!

Lacosamide can have serious cardiovascular side effects, such as PR prolongation, AV block, ventricular tachyarryhthmias, and atrial fibrillation/flutter.

Perampabel... I don't understand this one... like how did it get approved?! It has very serious potential for severe psychiatric side effects, including depression exacerbation, suicidal ideation, hostility, aggressive behavior, homicidal ideation, "neuropsychiatric disorders," psychosis, dependency/abuse, mood changes, and euphoria. It's Schedule III in the US, which contains a few obesity drugs, and is just below Schedule II, where stimulants and other drugs regarded to have the highest abuse/dependence liability but still are regarded as having "medicinal value," and just above Schedule IV, where benzos, Z-drugs, and some obesity drugs are. That's kind of saying something about it, I think. When so many psych drugs get turned down because of lack of evidence for efficacy and/or liability of it being unsafe or something, how in the world did this make it through the pipeline with a side effect profile like this?!

I've never heard of sulthiame before, so I don't know anything about it.

Zonisamide I definitely loved quite a lot. Side effects, if any were to be had, were extremely mild and eventually disappeared. Helped my mood and tremor, just didn't help enough with seizures and my neurologist opted to switch me to topiramate instead of trying to go further up on zonisamide (I was at 400 mg/day, and it does say that doses >400 mg/day are generally not more effective, where 600 mg is usually the max). I'm on Trokendi XR, a sort of branded extended-release version of topiramate, and I'm finding that I like it a lot better than regular generic topiramate as it seems to be more effective than generic topiramate.

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Thanks 

 

So far, so good on lowered dose. It was bedtime dose halved, yet so far I am more alert in the morning. 

 

I could happily live with this dose, if lowering further results in any complications. But neurologist assured me that I should be OK, given time since last seizure. 

 

Mood does not appear to be any different. 

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6 hours ago, DogMan said:

So far, so good on lowered dose. It was bedtime dose halved, yet so far I am more alert in the morning. 

So you were previously taking 1000mg in the evening and 500mg in the morning. Now 500mg morning and night?? Or do I have that wrong?

Also, the tablets you are taking, are they Epilim/Depakote (delayed release 12-hour) or Epilim Chrono / Depakote ER (extended release 24-hour)? Does your prescription bottle actually say Epilim, sodium valproate, divalproex sodium, valproate semisodium? Just curious.

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1 minute ago, browri said:

So you were previously taking 1000mg in the evening and 500mg in the morning. Now 500mg morning and night?? Or do I have that wrong?

Also, the tablets you are taking, are they Epilim/Depakote (delayed release 12-hour) or Epilim Chrono / Depakote ER (extended release 24-hour)? Does your prescription bottle actually say Epilim, sodium valproate, divalproex sodium, valproate semisodium? Just curious.

Yes, that is correct with dosages 

 

Valpro enteric coated is on the box. Which is generic epilim EC. 

 

Probably easier to photograph. 2 ticks

 

IMG_20200521_010746.jpg

IMG_20200521_010732.jpg

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I'm thinking these are the delayed release 12-hour tablets. Sodium valproate too because they don't use divalproex outside the U.S. really.

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1 minute ago, browri said:

I'm thinking these are the delayed release 12-hour tablets. Sodium valproate too because they don't use divalproex outside the U.S. really.

ah, hence morning alertness?

 

and yes, the coating is meant to pass through stomach and digest later

 

i've never pooped out a partial shell to my knowledge, but apparently not uncommon

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3 hours ago, DogMan said:

ah, hence morning alertness?

Well my thinking is that before you were having 1000mg at night which may cause some grogginess for sure in the morning if it's the 12-hour formulation. I take 1250mg of the 24-hour formulation all at night and I still sometimes feel groggy in the morning if I take it too late. Try to take it at like 7-8PM.

3 hours ago, DogMan said:

and yes, the coating is meant to pass through stomach and digest later

Yeah valproate is horrendous on the stomach. Immediate release does exist but it has to be taken 3x/day, which is obviously inconvenient. That's why they came up with the 24-hour tablets. Improved compliance and moved most of the pill digestion to the intestines instead of the stomach.

3 hours ago, DogMan said:

i've never pooped out a partial shell to my knowledge, but apparently not uncommon

Neither have I 😅

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