Is it Healthy to be Skeptical?

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Kage6415

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Hi, my name is Daniel. Let me first start off with how I happened to get my first epileptic episode. It happened back in 2009. It was the first week of August and in just a few short days I would be back in school ready to tackle my senior year of High School. I was 17 at this time.

During this time, I didn't have any transportation. I was and still am reluctant to get a drivers license so to get to school I would normally have to walk which is about a mile away so it was no real biggie. But it was summer time so I didn't walk that route to school for nearly 3 months and I wanted to get back into the habit of waking up a 5:30 in the morning.

So one day I did just that. I woke up at 5:30am, took a quick shower, got dressed, ate breakfast, etc. But this was the first time I got up this early and quickly in nearly 3 months so I decided to just watch some TV and dose off for an hour or so. By the time I left the house, it was about 7:30 and the temperature rose quite noticeably and continued to do so throughout my 45 minute walk. (I'm usually faster, but like I said, I was tired and I was able to take my sweet time since I was still on summer break.)

By the time I reached the school, I was fairly dehydrated and exhausted so I crossed the street to the grocery store and bought an energy drink. Let me make this clear though, this is nothing new. I was about to start my senior year so I've been doing this for the last 3 years.

So I got an energy drink, drank it a little faster than I should have, and made my way back home. By the time I got home, I was feeling terrible. I still can't describe how I was feeling; all I can say is that I wasn't in any physical pain or felt sick to my stomach or anything of that nature. So I told my mom that I was going up to my room to take a nap and to please not bother me. The last thing I remember was laying in bed for about a half an hour.

The first time I regained some consciousness, I was staring out the back window of a moving ambulance and I felt the paramedic stick an IV needle in my arm and I struggled a bit not knowing what was going on and he just placed a firm hand on my chest and told me not to fight it and I passed out again. Then my next conscious thought was when I was being pulled out the ambulance and saw my mom and a few nurses stand at the doorway to the ER bay. Then I regained full consciousness in a private room in the ER with a doctor at the foot of my bed and my parents to my right and my brother outside the room.

When everything was taken care of, I was referred to the local neurologist and had an appointment with him a few days later. I first had to do an EEG test. The first time I spoke with him was the day before the scheduled EEG test and he just simply told me what I needed to do to prepare for the EEG test. So I did what needed to be done and I went the next day to have the test done and about 10 minutes after the test was finished, my neurologist pulled my Mom and I into his office and he told me in a matter of a few minutes that I have epilepsy and that I needed to take some medication for it. His first and only choice in medication was Keppra (as it seems to be a fairly common drug.) and the first dose was set to 1,500mg. But as I started school, 1,500mg was simply too much. I couldn't wake up in time to get to school on time and I found myself falling asleep during class. So the dose was lowered to 1,000mg and it was a little more tolerable. I would normally be able to counter the drowsiness with a cup or two of coffee or an energy drink (I made sure I was either well hydrated before I had coffee/energy drinks or I bought a bottle of water with it and I would alternate between a sip or two of coffee and water.)

Now that I graduated in May of 2010, my dose was raised to 1,250mg per day which is a little harder to counter now. My only concern now is learning how to drive. I realize that once I myself am behind the wheel, I'll most likely become much more aware of my surroundings but even so, I find it hard to concentrate for long periods of time due to the medication. I'm not concerned with working because I'll be up and about for the better part of my shift and it's kind of hard to fall asleep when lugging around 50 pound crates or fall asleep standing up.

So is it really healthy to be skeptical about whether or not I have epilepsy? There are some moments where I just want to quit taking the drug all together but the thought of having another seizure worries me. But there's still this feeling that tells me that if I never had that energy drink on that unusually warm morning after waking up at an ungodly hour of 5:30am, I would have never had a seizure in the first place.

Is anyone willing to offer their 2 cents on what they think I should do?
 
I think it is healthy. You dont want to be putting all those drugs into your body if you dont, in fact, need them. I think you need to get yourself a second opinion from another neurologist. You can always ask to come off the meds slowly and see how things go. If you have another seizure (stay away from the energy drinks just in case) then you know you should go back on the meds.

If you dont then your fine. I just hate to think of all the money your wasting by paying for meds and hospital appointments and neuro appointments if you really dont need it. Sometimes doctors (not all but there are some that do) will say you need them just to collect a pay cheque.
 
So is it really healthy to be skeptical about whether or not I have epilepsy? There are some moments where I just want to quit taking the drug all together but the thought of having another seizure worries me. But there's still this feeling that tells me that if I never had that energy drink on that unusually warm morning after waking up at an ungodly hour of 5:30am, I would have never had a seizure in the first place.

Hi Kage,

I think it is healthy to be skeptical and question the doctors diagnosis. The medications all can/do have miserable side effects, but then again, seizures are something to worry about, too. If you're not tolerating the Keppra, then maybe you can ask for something else, or as Rae suggested, get a 2nd opinion.

From http://en.wikipedia.org/wiki/Energy_drink

In the US, energy drinks have been linked with reports of nausea, abnormal heart rhythms and emergency room visits. The drinks may cause seizures due to the "crash" following the energy high that occurs after consumption. Caffeine dosage is not required to be on the product label for food in the United States, unlike drugs, but some advocates are urging the FDA to change this practice
.
 
I have to agree that it is healthy to be skeptical. By that I mean ask in depth questions & don't accept being told things without researching them.

By the same token, if the evidence points towards you being epileptic then don't use skepticism as an excuse to deny what it likely or proven to be true.
 
I agree with the link on energy drinks causing seizures.

Q: Did your doctor say your EEG was abnormal? Or did he make the diagnosis based on symptoms. Did they say what type of seizure you had? Was it a tonic-clonic (grand mal) or a Complex Partial (loss of consciousness without dropping or convulsing)?

If they didn't find an abnormal EEG some other physical ailment could be causing the seizures. Did they test for heart problems, electrolytes, other neurological problems? Did they do an MRI?

If they haven't done these things, you might want to think about asking for them.
 
Ordinarily the docs don't make an epilepsy diagnosis until two or more seizures have occurred. Perhaps your EEG may showed a pretty clear-cut seizure pattern, which led to the fast diagnosis. (That was the case for me). Regardless, I agree that it's worth being skeptical and talking with your neurologist about the possibility of modifying your dose, or eventually tapering off meds altogether. Why was the Keppra dose raised when you graduated? Were you experiencing seizure-related symptoms?
 
Hi Daniel
Use your instincts... they are very powerful.
Remember... you went 17 yrs without a problem. That is worth noting.
My daughter went 14 yrs without a problme, and then had a Starbucks frappachino, went figure skating (her sport) for three hours, hormonally it was a stressful day on her body, and she had not eaten solid food, prior to her first seizure (I didn't witness it, adn she didn't know what had happened). She had another one that evening, but hadn't eaten much during the day since we thought she was getting the flu. I didn't know then what I know now.

If your nutritional intake it compromised for any reason, out of sorts for the needs of your nervous system, and energy... you run the risk of symptoms. Seizures are a symptom. The label Epilepsy only means you have had two or more seizures. So to me it is rather meaningless.

I would suggest that you clean up your nutritional choices dramatically, and you possibly can reduce the meds and maybe eliminate them. My daughter is med free, and has been seizure free for as long as 8 months so far. We have asked that she be seizure free for one year, but for now managing her blood sugar levels seems to be helping.

I had to trust my instincts, but I also used a journal to help convince those that monitor my daughter for medical reasons. The facts didn't lie.
 
everyone's a skeptic. I was way dumber than that though. at least the fear of seizures stopped you. I stopped the meds and presto ! status epilepticus ( but i DID go 3 months off the meds). some people ( like me) just have to learn things the hard way. but i was always a dumb kid ( i have actually stuck my finger in a light socket when i was a kid " just to see what would happen")
The downside is that JME requires lifelong AEDs for control and while they may taper your dose you will most likely never fully be off the drugs. If your EEG was normal and you have only had one seizure to date you may have been misdiagnosed and your skepticism may be healthy.
 
I think it is healthy. You dont want to be putting all those drugs into your body if you dont, in fact, need them. I think you need to get yourself a second opinion from another neurologist. You can always ask to come off the meds slowly and see how things go. If you have another seizure (stay away from the energy drinks just in case) then you know you should go back on the meds.

If you dont then your fine. I just hate to think of all the money your wasting by paying for meds and hospital appointments and neuro appointments if you really dont need it. Sometimes doctors (not all but there are some that do) will say you need them just to collect a pay cheque.

Sorry for this late reply; gotta love family drama. Between your post and now, I did in fact find a second neurologist in Denver who evaluated me. He was able to explain things to me like what exactly a seizure is, what can trigger it, etc. When asked what medication I was on, I told him I was on Keppra and that I'm currently taking 1,250mg. Given that it was my first seizure ever, he too was a little skeptical as to why I was suddenly given a medication for it. I told him about the side effects of Keppra (makes me drowsy to the point that it impairs my judgment a little bit and reaction time) and he agreed to slowly ween me off of Keppra and onto another drug called Lamictal. Since I'm still taking my daily dose of 1,250mg of Keppra and only 25mg of Lamictal, I can't really tell what side effects the new drug has on me. I should know in about 3 weeks when I start hitting the 250mg dose.

He's also going to obtain my medical records from the other neurologist and examine the EEG and I'm scheduled for another EEG on the 25th of April.

To me, honestly, I don't think taking a pill or two every day would be such a bad thing itself, but I'm already on a life-long medication; a steroid called Generotropin; I don't have a pituitary gland so I have to take a shot once a day 7 days a week to make up for it. I think it just irks me to think about the possibility of being on a second life long medication, if not a long-term medication. The steroids itself costs about $400 a month and I won't have Medicaid for ever and my Tricare is going to end as soon as my Dad retires from the Army in 2012. I can't see how I can afford to have to pay for 2 medications a month out of pocket.
 
Hi Kage,

I think it is healthy to be skeptical and question the doctors diagnosis. The medications all can/do have miserable side effects, but then again, seizures are something to worry about, too. If you're not tolerating the Keppra, then maybe you can ask for something else, or as Rae suggested, get a 2nd opinion.


.

Yeah, as I pointed out to Rae (post further down) I managed to find a 2nd neurologist in Denver and he's slowly weening me off of Keppra and weening me onto Lamictal.
 
I agree with the link on energy drinks causing seizures.

Q: Did your doctor say your EEG was abnormal? Or did he make the diagnosis based on symptoms. Did they say what type of seizure you had? Was it a tonic-clonic (grand mal) or a Complex Partial (loss of consciousness without dropping or convulsing)?

If they didn't find an abnormal EEG some other physical ailment could be causing the seizures. Did they test for heart problems, electrolytes, other neurological problems? Did they do an MRI?

If they haven't done these things, you might want to think about asking for them.

Yes, my doctor did say it was abnormal, and before, during, and after the seizure I didn't have any noticeable symptoms other than the obvious seizure and full-body muscle tightness I experienced for the next few days. I believe he said it was a grand-mal seizure. Based on what my brother and Mom discribed, I let out a sudden scream, fell and hit my head on my desk, and was shaking and frothing at the mouth.

They did preform an MRI; it was minutes after my EEG. I walked 2 halways over to the MRI machine. I believe they did test for electrolytes, and they noted that when I was hospitalized, my blood work revealed that I had a low potassium level but could easily be replenished by eating 2-3 bananas.
 
Definitely sounds like the classic grand mal. BTW, the "scream" is actually a very sharp intake of breath as the body is sending all the oxygen it can muster to the brain to help with the sudden burst of activity. For the same reason, people's extremities often turn blue. Neither the scream nor the blueness are much to worry about in the context of the seizure, but they sure freak out the onlookers...
 
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