First off, thanks to everyone to responding and offering their opinion
Before replying to each post I'll just quickly add one point and what my EEG said
When I was being brought to the hospital, I was getting treated for a cut above my eye. Would it be possible that I maybe rolled off the bed, hit my head and started seizing? would that be a potential trigger?
Also since that I haven't had any seizures at all. which is one of the main reasons why I don't feel the need to go on the medication. not sure if I mentioned that in my OP or not
EEG results: marked abnormal because of burst of spike and slow wave discharge seen over the left hemisphere following hyperventilation
Hi Super8,
Welcome to CWE.
I am not a DR and I am not quite sure what part of your post you are wanting advice on, but if you want my 2 cents worth, here it is.
If the "abnormal" EEG indicated epilepsy it was not caused by the backpacking trip but the seizure may have been triggered by the backpacking trip.
Epilepsy is the disease and seizures are the symptom, the disease is always there waiting to be triggered by something, stress, illness, chemical withdrawal, mineral imbalance or the ever popular seizures beget seizures/kindling model of epilepsy.
Everyone has a seizure threshold, a point at which a person can have a seizure. People with epilepsy have a lower seizure threshold than those without epilepsy.
Lets say that the normal threshold is 100 and if you have epilepsy your threshold is 70.
The stress on your body and brain from the backpacking trip pushed you to 71 triggering the seizures.
So if the blood work and other testing eliminated all other possible seizure causes and the EEG shows wave form activity indicating you have epilepsy, well then you most likely do have epilepsy.
The more your brain does something the better and more efficient it becomes at doing that something, whether it be playing guitar, driving a car or having seizures, the more you do it the the easier it gets to do.
As far as medicine goes it is always your choice to take or not take it, if the EEG show epileptiform discharges you are having seizures, small ones, and the brain is learning how to have seizures.
The seizures may get worse or they could stay the same. If it stays the same you may go the rest of your life not taking medication but having random seizures. If it gets worse you may be able to get control with medications or maybe the seizures will be so bad you cannot achieve control with any medication.
If the seizures are hard to control, instead of taking Divalproex for 2 or 3 years, you may be taking 3 -5 medications for the rest of your life.
All medication have side effects even aspirin. Just because a medication has a list of side effects does not mean you will experience those side effects. Only taking the medication will reveal what effects it has on you.
Whatever you decide I wish you good luck and good health.
My doctor said the same thing, about every medication having side effects. tylonel, aspirin, multivitamins, etc. But those necessarily aren't dealing with the brain like Divalproex is. the first line on the disclaimer sheet says "rarely this medication has caused serious, sometimes fatal liver problems". reading that throws me off
Welcome Super8!
Frink made very good points, so I won't repeat. I would like to share my experience with seizures. I began having absence seizures as a child, although I didn't know that's what they were until recently. I was fine through my teens. In my 20s, I began having audio and visual hallucinations. In my early 30s, I started having body twitches and lapses of time. Once, I was driving, hit the curb and blew out my tire, not knowing how I got there. Last year, I had a tonic-clonic. It wasn't until I had the tonic-clonic that I knew I needed to be tested for e. The EEG came back abnormal, and that's when I started medication.
My sister had a tonic-clonic when she was 30, but since the Dr. she saw said she fainted, she didn't press the matter. As time went on, she began having them more frequently, and finally saw a neurologist. She had an EEG, which was also abnormal. She began medication.
Medication has helped both of us in controlling seizure activity.
I said all of that to say since the possibility of seizures progressing in frequency and/or intensity is quite real, I would suggest researching various treatment options and sitting down with your doctor to discuss which one(s) you feel comfortable with.
All the best to you!
I'll definitely research more treatment options. I just feel that he kind of threw these pills at me as an easy solution. But who knows. I can't see him for another month and a bit...
thanks for your reply!
low doses of meds wont bring, or bring very, very low sides are are not bad to deal with.
its when you are on 3 or 4 at high doses.....thats when it begins to get bad.
500mg seems like a big dose to me! these pills are massive
on accutane i was doing 40mg and was suffering pretty bad from the sides. including loss of motivation / depression
You could really go either way for the time being. Because both of your known seizures occurred within 24 hours, they are actually considered one "seizure event" - the threshold for epilepsy is generally 2 or more seizures at least 24 hours apart from one another, unless there are other contributing factors. Contributing factors could be the presentation of the seizure (in my daughter's case while her initial seizures were all within 24 hours it was clear that her t-c seizures started as focal seizures, which are much more likely to be recurrent), it could be an abnormal EEG (which you have) or it could be an abnormal MRI. It's really up to the judgment of your neurologist whether those factors lead to a probable diagnosis of epilepsy (which essentially just means that you have a tendency for recurrent seizures), or whether it's better to wait and see.
So you could consider putting off starting medication with the hope that your seizures were either provoked or a one-time event.
However, if I were you I would make sure that you thoroughly discuss this with your neurologist and understand why they are recommending medication. How "abnormal" was your EEG, and what did they see there? Additional seizures are dangerous in themselves, and there is some evidence that continuing to have seizures can actually worsen your epilepsy. Do you live with someone who could alert you if you have a nocturnal seizure? How disruptive would a daytime seizure be to your life, including possibly losing your driver's license?
So for you it is really weighing the costs and benefits of medication. For the most part, the people on this forum NEED to deal with all the negative side effects of medication to avoid seizures - in general people here don't have a choice! But for you the "cost" of the possible medication side effects may outweigh the "benefits" of avoiding seizures if you are very unlikely to have another one. That's between you and your doctor.
Hope this helps!
Your post definitely helped! thank you
As of right now I'm putting the meds off as I think the seizures were a one time event / provoked. I mentioned it in my OP, but this was exactly 10 weeks into my trip. 10 weeks of not drinking much water, lots of beer, extremely hot weather, not much sleep, long days, etc.
I wasn't really living a "normal" lifestyle for the time I was gone
I'll definitely sit down with my neurologist and ask him lots of questions though.
he'll be coming back from a two month long vacation so I'll make him welcome back home hahaha
Some great points were made by the previous posters, and for the most part I would just be repeating what they said. I will add, though, that I understand the concern about your liver but there are liver enzyme tests taken from a blood sample that can keep tabs on the health of your liver.
just curious as to where in BC you live? I'm in the same province
Hi super8,
I know there is a disconnect between 'healthy all my life' and 'seizure' but your story indicates the just healthy view is past. Human bodies are never really perfect and epilepsy or some other health issue can happen to people at all ages. Everyone has a seizure threshold, repeated seizures just indicate you have a better tendency than a lot of other people. A low dose of medications might be quite sufficient to keeping you healthy. A large percentage of people do respond to appropriately chosen medication.
I think the perspective of finding out just how abnormal the EEG was is important. It would be less of a problem to put off deciding if you only had partial seizures (small ones) that didn't impair your functioning but that's not what you had. Tonic clonics can cause more damage both from the potential falls and from the seizure itself (let's assume hospital stays and emergency services are not harmful but that's not true for everyone). If you need treatment, your body is going to continue giving you these reality bites. Find out what kind of damage a big seizure can cause so you have the full perspective.
what is normally considered a lower dosage of meds? the ones I've been prescribed are 500mg
I had my first grand mal (tonic-clonic) seizure when I was 23. I was asleep and I woke up to my wife looking really scared and paramedics in my bedroom. I had another one in the hospital later that day and was started on Dilantin. To make a long story short, I definitely have epilepsy, may have had unwitnessed seizures earlier in my life, and I've been on meds now for the past 34 years. I have tried to cut back on the meds a couple of times and have had seizures as a result of that. I'll be on meds for the rest of my life, I'm sure. Also, I never really had an abnormal EEG, so lack of EEG evidence doesn't mean you don't have epilepsy. If you want to read a lengthy history of my adventures with a vagus nerve stimulator, here's the link:
Also, I would strongly recommend that you keep track of your seizures using this website: It can help you spot patterns that may be helpful in finding triggers or altering your meds.
Don't be afraid of the meds, but educate yourself about them and all aspects of your epilepsy. Do a lot of your own research. You are your best advocate.
Best of luck to you!
I'll read into your thread for sure! And yes as of right now I'm doing a lot of research, as well as my family, but I'm trying to get as many opinions from as many people as possible. Other professionals, people who have epilepsy, friends, etc
As Frink pointed out have you ever taken aspirin, ibuprofen or paracetamol? Do you read the drug information leaflets relating to them?
Loads of people don't bother with them because they don't think of these as long term drugs.
Incidentally do you drink alcohol, smoke cigarettes or drink coffee? Many people do. Caffeine is the most popular, legal psychoactive drug available. It actually has a maximum recommended daily intake and there are side effects from drinking too much of the stuff.
Alcohol - damages every single system in the body from the nervous system to the integumentary; if you are a regular drinker you are doing something damaging to your liver already - and I'm not talking about people who knock back bottles of spirits a day. This was something we simply were never meant to consume and consuming it gives us no evolutionary advantage.
Smoking, I'm not even going to argue that case.
All psychoactive drugs that tend to be consumed long term and cause varying degrees of damage to the brain and body - with varying degrees of recoverability.
Drugs don't always pop out of little blister packs.
The side effects list is a big pharma a** cover, they have to put the range of side effects on the drug info sheet just in case someone gets the 1 in 1,000,000 side effect they thought was so unlikely it wasnt worth the printing ink. Better paying extra printing ink than a lawsuit.
Oh yeah if it makes you feel any better I looked up your drug. It is another brand name for what I am on.
I've been on it since the early 80's. My liver is fine.
I'm also perfectly healthy just like you.
I just take meds to control my E.
Yes I've taken aspirin, no I haven't read the leaflets
don't smoke, but occasionally I drink. in regards to caffeine I'll sometimes have 1 cup in the morning before work
I definitely understand your point of view and will take all that to mind
You've gotta do what's right for you, don't feel pressured into anything either way. I had my first seizure when I was 15, had two more up until the age of 19, then went 6 years before having another one. So I was diagnosed late last year and prescribed medication, at this point I felt that because of the rarity of the seizures, I wasn't going to start the meds. If however, my seizures notably increased then I would definitely consider it. You could take the see how it goes approach for now, but be careful. It's entirely up to you. The side effects of medication do scare me too, and I'm prone to getting side effects -_-
as of right now I'm feeling pressured to take them from my neurologist and family doctor. some pressure from my family but they're mainly unsure either of what I should do. I saw another professional today (not a neurologist) who said I should explore my options
Hi, I was on divalproex and it really helped to (somewhat) control my seizures. After awhile my neurologist said it was starting to damage my liver. This was no overnight thing though.
I am over twice your age. Also at one time I drank very heavily. That might be why the divalproex started to effect my liver.
I'm sure your neurologist will continue to monitor your liver.
I suppose it's your choice but do you really want to risk having more seizures? Talk to you neurologist and express your concerns.
That's just my opinion for what it's worth.
I don't want to risk having more seizures but I personally don't think I'm at risk to have another one, unless I go on another crazy trip or go out a lot or just make bad lifestyle choices. But all of those can be avoided
