what do AEDs do, exactly?

[droolmonster]

I always want to know what the drugs do inside my head, their method of action, how they affect your cognition, etc.

I can never find any of this out. I find vague things out, but nothing really concrete.

My doctor chuckles at me. I ask him questions whenever I see him. He's an old guy, I like him because he wears funny ties, he has one with Dali's melting clocks. I guess he wants me to take the drugs without asking questions, but I've been on so many drugs now, that I'm a bit wary. He probably also laughs at me because I'm a young girl and he doesn't take me seriously. He probably also thinks that he's a thousand times smarter than me. But he's so old he probably took Freud seriously at one point. Freud thought that people that are afraid of snakes are actually afraid of the penis, because of the similar shape. He was a real perv that guy. That's just a fun fact though, Freud said a lot of other stuff, without him surrealism would never have happened, he was a good thinker for his time, personally I prefer Carl Jung.

All I know is, when I ask how a drug works, I don't want the answer to be that he doesn't know. Even if the explanation is long and full of chemicals, I want an explanation.

I feel so in the dark. It's uncomfortable, not understanding things.

Ok through complaining.

[Nakamova]

Well the anti-epileptic drugs don't all work the same, and for some of them the details are still getting worked out. In general, though, they work by inhibiting the excitatory neurotransmitters and by exciting the inhibitory neurotransmitters. As to how they do that -- it has to do with altering the chemistry of the ions that work at the "gates" of the neurons. I'm not a neuroscientist or a psychopharmacologist (and I don't play one on TV) so I'll stop there.

[Nakamova]

I know what you mean about the frustration. I want to know WHY Lamictal can affect your vision or your hair, give you drymouth, or change your appetite. They say it binds with the melanin in the body, including in the iris of the eye, but they don't know what this might mean long-term. So I want to know WHY it does this, and I want at least a guess to what that might mean long-term, and I want to know that people are studying this.

[Brent]

As Nakamova points out, each is different. The bottom line is that the exact mechanism of many drugs is either completely unknown or not completely understood. This is true not just of anti-epileptic drugs, but of most drugs.

When I worked in the ER and had plans to go the med school I carried a handheld drug database. Anytime a drug would come up that I wasn't familiar with, I would look it up. Many, many meds have an unknown mechanism of action.

Go to the Epocrates database online. This is the same database that a lot of docs use. Look up any med and click on "Pharmacology", then look at "Mechanism of Action".

I take Keppra. If you go to Keppra's website, they go into great detail telling you how they believe the med works, though they are careful to not commit that as fact. If you look up Keppra in the database, you will see the mechanism of action as, "exact mechanism of action unknown".

I would highly recommend this site to anyone who takes meds and wants to know what they are taking. There is a ton of useful info there - stuff you can't find on most websites that are geared toward the general public.

Other meds with "exact mechanism of action unknown":
Lamictal
Trileptal
Topamax
Depakene/Stavzor
Zonegran
Neurontin

Conversely, about half of anti-epileptic drugs have some MOA understanding, and this has mostly to do with modifying neurotransmission in some way.

-B

[Crystal11]

From the research on the medications I have tried and now take- such as Tegretol- it works with the sodium channel blockers I believe. Those channels are always sending and recieving neurons- so to someone with Epilepsy- we get those neuros but we have a tendancy to have too many show up at one time- causeing abnormal number of them. Causing a seizure by flooding the channels. I hope I have remembed this stuff correct. Apologizing if I didn't.
I know that Keppra is a calcium channel blocker. Both meds doing the same thing:
Reducing the number or pace of neuros into the channel
Slowing them down, as well as other parts of the brain, or all of it.
And keeping things slowed down the whole day or whole time we are using the medication.
I will have to research it again though to make sure I've remembered it correctly. I saw a great video on youtube of all places about these channels. Its an educational type video- not a person talking about it. It explains it in great detail.
Also, I just remembered that when the neuros build up and all start going into one part of the brain, or all of it, it creats a seizure. Normally the neurons are going to different places all at different times, keeping our bodies working fully and functionally. This is why we have our senses, our ability to perceive things and have control over our bodies.
Those of us with Epilepsy have a lowered seizure threashold compared to the seizure threashold of those with out it. Meds help control our brains or parts of it that are prone to seizures.
Specific medications are selected based on the frequency, type of seizure and where in the brain they come from.
I now take 3 medications for my complex partial seizures and drop attacks. I will be getting off of Tegretol soon yay!

Oh, and another thing about meds- all meds. There is a "lock & key" system that allows the medicine to work where ever its needed. I take a beta-blocker for my heart- for a mild condition of Tachycardia or faster than normal pace of my heart sometimes. The medicine binds to the part of my heart that has the Tachycardia going on, and the medicine only works in that part of my heart- not all over my body..

I hope this makes sense..
I would ask the pharmacist actually- since they mix meds and make them specifically for special orders. They also would know how the medicine works and a whole lot of other info too..
Ask for a consultation the next time you go in for your meds since the doc doesn't seem to want to answer your questions.


Take care,
Crystal

[bigbro]

From the research on the medications I have tried and now take- such as Tegretol- it works with the sodium channel blockers I believe. Those channels are always sending and recieving neurons- so to someone with Epilepsy- we get those neuros but we have a tendancy to have too many show up at one time- causeing abnormal number of them. Causing a seizure by flooding the channels. I hope I have remembed this stuff correct. Apologizing if I didn't.
I know that Keppra is a calcium channel blocker. Both meds doing the same thing:
Reducing the number or pace of neuros into the channel
Slowing them down, as well as other parts of the brain, or all of it.
And keeping things slowed down the whole day or whole time we are using the medication.l

I think what you mean to say is that the channels are causing neurons to fire? My sister would explain that what happens in a seizure is that some neurons start firing abnormally much, and that causes others to start firing in a chain reaction, until however much of your brain that is susceptible to seizures has its neurons firing all at once. And then the neurons will keep firing until it can't go on any longer - it needs to recharge energy, or oxygen, or maybe something else. This is what causes the positive feedback loop to break down.

The way you talk about Tegretol (carbamazepine), I immediately relate it to overclocking of a computer. A CPU is like a brain in a lot of ways. Each brain is different; each CPU is different (Intel or AMD will make the same chip, test it, then put it in a different bin depending on how it did during testing, and then label it as a given chip name).

For a given voltage, each CPU will have a different clock speed that it can run at before it goes unstable. (e.g. it will be able to run fine under 2.4GHz but crash above that speed). If you increase the voltage, this stability threshold will rise. The instability (crashing) is like a seizure. There will be one little bit of the chip that causes the error, because of manufacturing variations, and where that error is varies depending on the chip. When the machine crashes, it will require rebooting.

So E is similar - the location of the seizure trigger point (if there is an identifiable area) also varies from person to person, as do the specifics.

E is a bit like a computer that has been poorly overclocked. Overclocking is where you take a part that the manufacturer has said that it will run at a certain speed and voltage, and you take it and run it at a higher clock speed, possibly with more voltage. Maybe you can get away with this - maybe the manufacturer set too high a safety margin. Or maybe the manufacturer was right, and your overclock will give you occasional crashes.

Another way the analogy fits is that the more you stress an overclocked machine, the sooner it will crash in general. This is a lot like how you bring on a seizure.

(This makes me think - is epilepsy higher in families of faster thinkers? If their genetics gives them a higher "clock speed", then this might show up as E in some kids and higher IQ or faster thought in general - a trade off.)

Anyway, is there anything else we might learn from this analogy? Well, perhaps if you have E your brain is naturally at an unstable overclock. How might you manage this? Well, for one thing, you don't want to stress it too much. Give it as much of an easy workload as you can give. Monitoring and adjustment via neurofeedback might help to run your brain at a lower clock speed as well. And anti-epileptic drugs might be either adjusting the voltage or the clock speed in order to make the brain more stable.

[Nakamova]

Some of the anti-epileptic drugs work not by preventing the seizure, but by preventing it from spreading once it starts. An analogy would be creating a moat, or dampening the area around a potential fire site, so that if a fire started it would be contained.

[bigbro]

All I know is, when I ask how a drug works, I don't want the answer to be that he doesn't know. Even if the explanation is long and full of chemicals, I want an explanation.

As Brent says, the mechanism of many drugs is often not known. The human body is a bit of what engineers call a "black box". We don't know how it works other than through reverse engineering it - trying something and seeing what works.

What I learned from my late sister is that you shouldn't rely on the doctors to tell you the side effects of drugs (or interactions with other substances, e.g. grapefruit). Often she didn't find out something until she read it herself, either with the drug itself or online.

So my advice to you is to spend some hours googling your medication, and learning as much about it as possible. Maybe your doctor could do all this research for you, but time spent doing that isn't going to help him buy his next BMW. Your time is much cheaper than his. And write down the results of your research - you may not always be able to remember what your results were.

I would also use this forum to research about anecdotal reactions to the anti-epileptic drugs you are on. A google search with

site:coping-with-epilepsy.com drug_name

will do the trick.