I Am New To All Of This..Help?

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Hey there everyone. I'm new to all of this so I was hoping that I could get some tips or help or at least something to go off of. I am 25 and just had my 2nd seizure ever. The first seizure was believed to be due to 2 medicines I took at the same time (which no one told me was a bad idea until AFTER I took them) however, this 2nd seizure I was on no medicine other than birth control. Both of these seizures have happened in the past year, actually they are almost a year apart exactly. I found a new neurologist and she put me on Aptiom as a stand alone drug. Does anyone have idea about this drug? Pills honestly scare the living hell out of me, especially seeing all of the bad side effects that are common, so I was wondering if anyone had tried it and had any useful info on it?

Please let me know!
 
Hi and welcome to CWE!

Out of curiosity, what were the two medications that caused your seizure?

For the latest seizure, can you think of anything at all that might have played a contributing role? Things like fatigue and dehydration are common triggers, but triggers can also be things like hormonal fluctuations, food sensitivities, low blood sugar, infection/illness, emotional stress, flashing or flickering lights, etc. This link http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/ has more information about triggers and ways to identify them. Hopefully your seizures are flukey and/or related to specific situational triggers and won't happen again.

Do you have any history of migraine? Any other health concerns, allergies or sensitivities? If you're sensitive to hormonal fluctuations, it could be that the birth control is a factor. If you're still on birth control pills, you should know that some of them don't work as well when taken with Aptiom -- I assume your neuro knows this and has prescribed accordingly, but you should check in with her if you're not sure.

I think only one or two forum members have tried or are currently on Aptiom (eslicarbazepine). Hopefully they'll chime in. It's similar to Trileptal, an older anti-seizure med so it may have a similar profile. As far as side effects go, the list always seems daunting, but it's important to remember that most of the common side effects affect no more than 10% of the people who try the med. Dizziness is the Aptiom side effect that's seems to be most common, affecting 20 to 28%. The side effects are listed here: http://www.drugs.com/sfx/aptiom-side-effects.html

Everyone reacts differently, so it's hard to know how the medication will work for you. The important thing is to pay attention to how are you feeling, and let the neuro know if it doesn't seem like a good fit.

Best,
Nakamova
 
hello and welcome to CWE,

meds often can cause seizures Aptiom is one of the drugs I've never taken.
Before I take anything I will look them up or talk to my pharmacist about the drug.
Always pay attention to the most common side effects first but if it says seizure I won't take a drug.
 
Nakamova,
I was on Keppra and a muscle relaxer for my back. I don't remember which one it was, but after I took them and had the seizure THEN I was told by a doctor that whatever was in the muscle relaxer has a bad reaction with Keppra.

**I went to see the neurologist in the first place because I have always had a bad memory, no one knew why. One doctor said that it was partly because I also have Spina Bifida and that is apparently common among us. Spina Bifida was also the reason I was using the muscle relaxer for that time.**

For the lat seizure there was nothing off about that day. I felt fine, actually I felt great. I was awake, alert, and then boom, nothing. And when I asked the neurologist about triggers or what I could have done for this to happen, she said that looking at all the tests the hospital did, there was no trigger. It just kinda happened. All of my tests came back negative, and good. I even quit smoking weed a month and a half ago, so there's no weird drug reasons. Either way, pills scare the crap out of me, and the last 2 pills I was on I had bad reactions too, and obviously this is a pretty serious drug...I mean it's working your brain so I am just a whole hot mess and am trying to cope with this all. I almost died with this 2nd seizure. I swallowed my tongue and wasn't breathing for 3 minutes. If it wasn't for the woman at my work who bravely stuck her fingers in my mouth to get my tongue, I might not be here to write this. So, as you can imagine, I am just super scared and really want all the help that I can get.
 
The lady at your workplace no doubt meant well but she needs a little education about first aid for a person having a seizure.

First of all it is physiologically impossible to swallow your tongue. Just can't happen any more than you can stick your elbow in your ear.
It is possible for your airway to get blocked in the same way that causes snoring when you are asleep (or unconscious in the case of a seizure). The best thing someone can do for this is to roll you onto your side and put something soft like a pillow or rolled up jacket under your head.
Sticking fingers and other things into your mouth is not only unnecessary but it could even be harmful. The unconscious person could get their teeth, tongue and other tender parts of the inside of the mouth damaged and the would-be savior can get a badly bitten finger.

Sometimes you do quit breathing while having a seizure. It's quite normal but I have been told by people who have seen mine that it is really scary. You will start breathing again on your own. That's probably what happened and so she thought she "pulled your tongue out".

Please gently tell the lady who jumped in that you do appreciate her help but get her the right info so that it can be better for everyone if it ever happens again. There is so much mis-information out there. Stories like this feed into another round of factoids.
 
About your seizures themselves. Another common seizure trigger is caffeine (present in not just coffee but also energy drinks, headache remedies, diet pills, etc).

Others are MSG and aspartame fake sweetener plus excessive amounts of any sugar and alcohol.

Another big one is lack of sleep. Mix up a few of these triggers and add some stress and you have the perfect recipe for a seizure.


Also, two seizures, one of which was explained by the med combo , does not necessarily make you a person with epilepsy for life. I would recommend listening to your doctor for now but always realizing that you do not take any medications unless it is what YOU choose to do. Perhaps you can get the situation under control with pills while you work on ways to control them naturally.

For right now:
Take a breath. In through your nose, out through your mouth. OK.

Eliminate all booze, caffeine, sugary stuff and fake sweeteners plus MSG

Get some exercise daily. Doesn't have to be a huge workout just get the blood pumping.

Get out in the sun. The vitamin D will do you a world of good.

Get your rest. It's not optional. Minimum eight hours.

Find a way to de-stress. Whatever works for you. Yoga, meditation, long walks. Up to you.

Many people have had great success controlling epilepsy by cutting out grains, corn, soy and milk from their diets. Google the G.A.R.D. plan of Dr. John Symes (an occasional contributor to this forum). Dr Symes is a veterinarian who noticed that there never was such a thing as epilepsy in dogs and cats before we started putting grains in their food. Now veterinary epilepsy is rampant. When you take them off the grain "food" they stop seizing immediately.

Many will say that, unless you have Celiac disease, you don't have to worry about gluten. This is just not true. Dr. David Perlmutter (a human neurologist) has written a great book called Grain Brain. His contention is that gluten sensitivity manifests in different ways in different people. Some have horrible GI symptoms if they have one crouton on a salad. But some people have the sensitivity inside their brains.


I think it would do you some good to feel like your world is not totally being controlled by forces outside yourself. (My seizures started at around your age. I hear your frustration). If you are willing to make these dietary and lifestyle changes you could take back your life. What do you have to lose?

Keep us posted on your progress.
 
TEB:

1. Why were on you the Keppra in the first place if that was before your first seizure?
2. Triggers don't have to occur immediately before a seizure. There can be a delayed reaction, they can be cumulative, etc. I suspect that quitting weed was at least a contributing factor. For many people, marijuana (the non-psychoactive part), works as an anti-seizure medicine. Quitting it may have left you more vulnerable to seizures, especially if you quit abruptly.
 
Alohabird,

Thanks for all that info! And I don't know if I used the wrong term or not, or exactly what did happen, but she and a bunch of other people said that my face went blue and that's when they realized I wasn't breathing and that my tongue I guess was blocking air from coming in? And that's when she looked in my mouth and freaked out and stuck her fingers in there. EITHER WAY! lol I am happy she did whatever she did, because I'm here. I mean, I also didn't know that you stopped breathing during seizures. And oh yeah, her finger did get badly bitten! That's for sure. I will definitely let her know that though. And cutting out coffee is going to be super tough. I did ask this new neurologist about dieting, and the keto diet. (My friend's daughter has cerebral palsy and has seizures all of the time. They put her on that and it has helped an INSANE amount.) My neurologist said that dieting is insanely tough and the results vary from person to person. I'm still doing research on it. I know alcohol is a big one, and that's fine with me, I don't really drink much. I just find it weird that it all started at this point in my life. Did your doctor give you any reason why it started around that age for you? I really don't get it at all. Please get back to me! And let me know! Again, thanks for all that info!!! And I agree with that no making me an epileptic! But apparently, that's not how my doctor is looking at it. -____- So I'm kinda trapped in this for now.


Nakamova,
1. I know that sounds weird lol. They put me on Keppra because of an abnormal EEG. I went to see this doctor for memory issues and he did a bunch of tests and all of them came back normal except for the EEG. Their thought was that I was having "absent seizures" and it wasn't necessarily a memory problem, but that I wasn't even processing the information because I was having these types of seizures. I also at the time (I was stupid and naive) didn't know what Keppra was, or that it was even a seizure medication, I just assumed that what my doctor was giving me was safe and for memory. So that was my own dumb fault. BUT that's why he gave me the Keppra in the first place.
2. And even though that trigger fact is unknown, go figure when I try to be a responsible adult, it dicks me over! I told my doctor about that when I spoke to her, and she kind of brushed it off, not even going into detail about if that could have been a factor or not because it's not legal, so I don't think I'll get any information about if that may have played a role in it or not from her. But thanks for that info too! All the questions I've been getting so far were mostly "Did you notice anything off about that day" not about any type of long term trigger I guess is what I'd call it.
 
You have a lot of questions, and that is great. Many I don't feel I can respond to beyond what would be based simply on my opinion rather than known fact but I will say that often people are put on an anti-seizure medication right away after a first seizure if an EEG is abnormal, because the abnormal EEG can mean future seizures are more likely to occur than if the EEG is normal or that the seizures may get worse. It might be - and I'm just guessing here - that your seizure type has changed/progressed beyond absence seizures so a review by a neurologist and a repeat EEG may clarify a lot of things. I wasn't aware that Keppra is prescribed for absence seizures, but can be (not always) helpful for partial and tonic-clonic seizures. What is your dosage?
 
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Masterjen,
Yeah, haha I kind of feel like a burden with all my questions, but I have honestly never been so scared in my life. I hardly know what to do with myself at this point. And that sounds like a pretty good guess? I don't really know, but it makes more sense than anything I can come up with, which is a whole lotta nothing. The new neurologist is going to review the past EEGs herself to see what/why the previous doctors did what they did, but from what she said, she would have never put me on a seizure medication just because I had an abnormal EEG. But I don't remember what dosage I was on for the Keppra, I'm assuming it was for the starting dosage (whatever that might be). But for the Aptiom I'm doing 400mg once a day for 2 weeks, getting blood work done (she's worried about sodium levels I think) and then depending on how I react to this, maybe upping the dose? However this doctor doesn't really seemed to be worried with EEGs, because I asked if she would be doing one after I've been on this for the few weeks and she said no. So, this is my 3rd doctor and I still don't know if she's a keeper. I'm just all too worried about this :/
 
Not a burden in the least!! Asking questions is how we learn. Most of you questions I did not answer because I hope Nakamova might chime in again about. Also, important to remember this is a forum in which lots of people have lots of opinions and experience with seizures, but none of us are doctors and we don't know your medical history or all test results. It is important to remember that when you research the internet to never go by just one researcher's opinion. Check for other opinions as well, and remember to look for negative sides to a theory as well in order to critically analyze it.
Your doctor should be presented your list of questions as well.
 
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No, I definitely am checking out all options. I just (in my opinion) was dicked over by my last 2 doctors, so I was hoping to get some insight from people instead. And maybe even getting some ideas on questions I should be asking my doctor, because I don't know exactly what I should ask or when i should ask, or what is normal. Thanks though! I appreciate your info! :)
 
I agree with masterjen, write down everything that's unclear or confusing about your symptoms, diagnosis and treatment so far, and have those questions ready to ask your neuro. It can be helpful to have someone with you at the appointment as well to note down the answers. Don't leave the appointment until you feel you have a better understanding of what's going on. Find out how to contact the neuro in case you have more questions after the appointment is over.

While your full-on seizures (called tonic-clonic seizures) may have come out of the blue, it sounds like you might have had a prior history of absence seizures (and possibly other kinds as well) without being aware of it. You may have been "vulnerable" to seizures for a while, but it took particular trigger or triggers to provoke them.

In my case, my seizures arrived with no warning when I was 35. The best guess is that I was more vulnerable to seizures due to a head injury when I was 5, and it took a "perfect storm" of factors 30 years later to push me over my seizure threshold. But there's no way to know for sure.

Some questions for your neuro:
1. What is her take on the past and most recent EEG?
2. What are the pros and cons of Aptiom, and why does she recommend it over other anti-seizure meds (there are many to choose from). Are there any particular side effects that you should be aware of?
3. Assuming you have no more seizures on the Aptiom and no problematic side effects, how often will you need to see her? Does she recommend that you remain on medication indefinitely? (usually two years is a starting point).
 
Alohabird,

Thanks for all that info! And I don't know if I used the wrong term or not, or exactly what did happen, but she and a bunch of other people said that my face went blue and that's when they realized I wasn't breathing and that my tongue I guess was blocking air from coming in? And that's when she looked in my mouth and freaked out and stuck her fingers in there. EITHER WAY! lol I am happy she did whatever she did, because I'm here. I mean, I also didn't know that you stopped breathing during seizures. And oh yeah, her finger did get badly bitten! That's for sure. I will definitely let her know that though. And cutting out coffee is going to be super tough. I did ask this new neurologist about dieting, and the keto diet. (My friend's daughter has cerebral palsy and has seizures all of the time. They put her on that and it has helped an INSANE amount.) My neurologist said that dieting is insanely tough and the results vary from person to person. I'm still doing research on it. I know alcohol is a big one, and that's fine with me, I don't really drink much. I just find it weird that it all started at this point in my life. Did your doctor give you any reason why it started around that age for you? I really don't get it at all. Please get back to me! And let me know! Again, thanks for all that info!!! And I agree with that no making me an epileptic! But apparently, that's not how my doctor is looking at it. -____- So I'm kinda trapped in this for now.

You're welcome. I just wish this info had been available to me when I was your age.

About the first aid. If people are sticking fingers or spoons or whatever in your mouth, it can actually make the breathing problem worse by getting in the way. As you are coming around and starting to breath on your own you could actually choke on whatever in being shoved in your mouth. Putting you on your side gets the tongue out of the way naturally.

A lot of people will fight you if you get between them and their java in the morning but that is just further proof that it is a drug. If, years from now, you figure out that you can have a cup now and then without the seizures coming back, then fine, no big deal. But for now treat it like the neurotoxin that it is.

Neurologists really know pathetically little about nutrition and dietary means of controlling epilepsy. A great basic primer on the modern version of the ketogenic diet is "Keto Clarity" by Jimmy Moore. It is not insanely tough. Having seizures is insanely tough. Living with the side effects of AEDs is insanely tough. Giving up junk food and gluten is easy. The results vary because some people don't have the spinal fortitude to put down the friggin pizza and soda. The results are remarkably consistent if you are consistent about it.

My doctors never had a clue why I had seizures. I have figured out in 20/20 hindsight that it was a combination of junk food, caffeine, sugar, sleep deprivation and stress (senior year in college) that got mine started.

You are not trapped in anything. Your doctor works for you not the other way around and don't you forget it. You control the decisions for your body, nobody else.

Nakamova,

2. And even though that trigger fact is unknown, go figure when I try to be a responsible adult, it dicks me over! I told my doctor about that when I spoke to her, and she kind of brushed it off, not even going into detail about if that could have been a factor or not because it's not legal, so I don't think I'll get any information about if that may have played a role in it or not from her. But thanks for that info too! All the questions I've been getting so far were mostly "Did you notice anything off about that day" not about any type of long term trigger I guess is what I'd call it.

Yeah, you might want to google the CNN documentary by Dr Sanjay Gupta called "Weed". And the cover article of National Geographic this month is called , "Weed, The New Science of Marijuana". The tide is really turning on this issue. I think it will be legalized soon.

For those of us with E, we have to be careful to find a strain of weed that is high in CBD (the medicinal part) and low in TCH (the stuff that gets you hammered). The opposite kind is what has been selected for by growers for a long time but that is changing too as the high CBD varieties are becoming more in demand. A high TCH strain can actually cause seizures so, if you indulge, make sure you know what you're tokin.

While we wait for the legislature to pull their collective head out, there is something legal you can do called CBD oil (available on Amazon). It comes as capsules, a spray in the mouth and a concentrated sublingual oil.

Nak is right that the triggers can be cumulative. Like I can get away with ONE sweet treat OR ONE glass of wine OR ONE night with too little sleep, etc. but if it is more than one and the ORs start turning into ANDs that's when the trouble starts.

Keep asking questions. And keep a list of questions for when you see the doc.
 
How is it going with the Aptiom? I was prescribed it today but am nervous to take it. So many people are writing about negative side effects and no improvement with seizures.
 
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