I got some pills, and the doctor kicked me out...

[Kage6415]

Hi everyone; My name is Daniel; and I'm 18 years old. On August 10th, 2009, I got up at 5:30a.m. and proceeded like I would do any other morning during my school year, only this was the first time I did this that summer as school was due to start in 2 weeks.

While I wasn't particularly happy with having to get up at 5:30a.m., I did so anyways and I felt fine aside from a heavy grogginess; what other 17 year old boy wouldn't feel tired and annoyed at the world for getting up so early?

Anyways-- I took a little longer than usual and by the time I left the house to start on my 1 mile walk up-hill to my high school, the sun was already out and it was a fairly warm day; warmer than usual. I just shrugged it off and I went all the way to my school. This was no great feat since I have done this hundreds of times before, but since it was fairly hot outside, I was really dehydrated and I was still very tired.

Being a high schooler, it was almost a sin not to have an energy drink; so I walked across the street and went to the grocery store and got one. This was nothing new as I have done this countless times before in the past. But when I was about halfway to my house, I started to feel really fatigued. I just figured it was just due to the unusually high temperature and I just soldiered it back on home. When I got home, I was sweating profusely and I was really thirsty, so I just grabbed a drink of water and went up to my room; the coolest place in the house.

A few minutes have passed and by then I was on my computer checking my emails. After a while I really started to feel terrible; it wasn't sleepiness but rather something else. I had problems thinking straight and I just physically didn't feel good so I just shouted out to my mom as I closed my door that I was going to take a nap and not to disturb me.

Well I went to lay down and about an hour has passed and no sleep came; I was just getting worse and worse by the minute; but I didn't know what else to do. The last thing I remembered was getting back onto my computer to play some music and then suddenly it hit me.

While I don't remember anything about the actual seizure, the next thing I took notice of was that I was staring out the window of a moving vehicle down a street just around the corner that lead to one of the main streets in my area. The next thing I knew, I felt a very sharp pain in my left arm and I jerked and a gloved hand pushed against my chest and a some-what other worldly voice told me "Don't fight it." Then, I blacked out. When I came through again, I was being rolled out the back and I saw my mom standing there with at least 4 other people whom later I met in the recovery room. When I did finally come through to full consciousness and awareness, the first thing I saw was a doctor leaning over my feet and she asked, "Daniel, do you know where you are?" To which I replied, "I'm in a hospital?" She said yes and then asked me, "Do you know what happened?" To which I responded, "I had a seizure."

The thing that still stuns me is the fact that as far as I could consciously remember, no one told me I had a seizure. I wasn't surprised; it was like someone just said my eyes were blue. At this point, I was just so sore all over and so tired, that I just wanted to go home and sleep.

About 3 days later, I went to a doctor who specialized in epilepsy and set me up for an appointment for an EEG and an MRI scan. Well, when the day came, I went through the EEG which was actually kind of fun given it's circumstances, and then the annoyance of the constant deafening humming of the MRI machine, and before an hour has even passed, the doctor pulled myself and my mom into his office and just told us as plainly as possible that I have epilepsy, and that he is prescribing me a medication called Keppra, and then just as soon as he has pulled us in, he kicked us out.

My mother and I had so many unanswered questions and the doctor was so heartless that we both just kind of sat there in the car and cried for a brief moment; well, my mother did, I just sat there dumbfounded with the prescription slip in my hands.

I don't know why I have put off going to a forum such as this one in search for some answers and some comforting and possible tip son how to curb some of the side-effects of the drug, but I'm here now and I hope that through my strengthening, I can learn to help other people who are diagnosed with epilepsy.

That's a little bit about me. I look forward to sharing more about myself though; but for now, that's about it.

 

[epileric]

Welcome to the site Daniel

I've had epilepsy all my life but I rarely have convulsive seizures.

I was on keppra for a while so I know the side-effects as do a lot of people on this site. Some of those side-effects are emotional (anger, depression) so watch for them. If you do have them vitamine B6 has helps some people on keppra. If the side-effects are too strong you might want to mention that to the neurologist. The whole point of being on medication is so that you can function better & if side-effects make you function much worse then it just isn't worth it.

As far as your neurologist goes, remember you're paying him. I would suggest you & your mom write down all the questions you have & either go back & ask them and if he doesn't answer to your satisfaction then find a new neurologist or just skip the first step & find a new neurologist. I went through a lot who were extremely condescending or just plain rude before I found a good one with a half decent personality.

 

[jesusisonthefountain]

Im so sorry. I understand how upsetting this was and is. I have learned so much from everyone on this board. I was told by a doctor when I described my symptoms exactly this "Im going to pretend I did not hear you say anything like what you just said." All I had said to him was that during the middle of the night I was waking up with my toes pointed and my head jerked back (I was running a lot and thought I was having leg problems, not hypoglycemia). I did not figure out I had a seizure until a friend of mine who is a an EEG specialist told me about 6 years after the event. I for the life of me could not figure out what I had said to the doctor that was so bad, I was so worried I had called him short or something worse and could not remember saying it. You will find many friends here. Good luck and keep posting.

 

[Kage6415]

Thanks for the kind post.

The one problem I have with Keppra is the fact that I would be so tired in the mornings to the point where during my first couple classes, I was struggling to stay awake and focused on the task at hand. Usually I would be able to combat this with a cup of coffee or an energy drink (after I have been well hydrated.)

The medication has helped in a lot of ways though; while I had not noticed these things before and just assumed it was a natural thing, I've noticed that I don't have these sudden jerks in my fingers or legs like I would have sometimes before I was put on the medication, nor did I have so many head aches and when I do, they weren't as severe. And thanks to the side effects of it making me really groggy, it has actually helped me sleep at night; so that's a plus .

And about the neurologist, my mom has made an appointment with another one at a different hospital in 2 weeks. I hope through her we can get some of these questions answered. It's just hard to find a neurologist/hospital that would accept our military health insurance since I had turned 18 and Medicaid has dropped me.

But thanks again for the kind post and few tips. I might just explore using vitamins B6.

 

[epileric]

Also remember to watch your intake of coffee & sports drinks since they both can trigger seizures. Figure out how much it takes to counter the drowsiness without making the seizures worse.

 

[Kage6415]

Yes, doctors can sometimes be some of the biggest jerks in the world. I was going through a series of operations not long ago, and I needed some heavy pain killers to cope with the pain brought on by the massive infections and the dressing changes I had every day, and one day I ran out and my nurse tried to call a doctor and see if he can get me some pain killers because I was literally crying during and after the dressing change. So the doctor called my house and he was so impolite and inconsederate, and he went as far as to hang up on me, call my nurse back, and say and I quote, "He doesn't need any pain killers. He's just a junkie trying to get high!" My nurse was almost about to sue him; and I was too. But alas, that didn't happen.

Anyways-- I'm glad you at least have a friend who specialized in EEG testing! To know that you had a seizure during the night like that must have been scary. I at least would have been scared.

When my seizure hit me, apparently I screamed out loud and I fell straight down to the floor hitting the side of my face on my bed railing. My brother was in his room which was right next to mine and he got up and checked on me. My mouth was frothing up and my brother has been a football player for 3 years in a row in high school so he knew a little bit about sports medicine and what to do in this situation so he turned me on my side and from what the paramedics had told me and from how they described how I looked like (blue face and lips) he saved me from possible brain injury.

 

[Kage6415]

Oh, I have. Like I've said, before I do I always make sure I'm well hydrated so I'm not gulping it down. And when I do get an energy drink, it's a low-carb, low-sugar energy drink and I drink it down slowly. I try to get the drinks that come with a bottle cap so I can drink it through an extended period of time. As for coffee, I usually just get a fat free decaff anyways; it's just that weird game of mind-over-matter; I try convincing myself that it's a regular coffee and it usually does the trick.

 

[valeriedl]

I think it was kepra that I was on at the time (I've been on so many different meds that it's hard to keep track of) all I did was sleep. I didn't eat or anything. I would get out of bed, take a shower, sit down on the couch or in bed and fall back asleep.

I lost about 20lbs because I wasn't doing anything other than sleeping and I looked like crap.

I would defently get a new dr, someone who takes the time to listen to you and not as you said- give you a script and then kick you out of the office. There is no sense in going to see him because I don't really consider him a dr at all. If the meds that he pescribed for you aren't working then he should realize that and get you on something else that will.

I also stay away from caffeen too. My neuro said it isn't good. I drink decaf coffee and they usually make decaf expresso and other sorts of fancy drinks like that too.

I still have to take a nap in the afternoon, only for about an hour. I don't know if it's an effect of the meds or not.

I hope things work out for you.

 

[RobinN]

Kage - red flag to me..... you only had one seizure. That does not make a diagnosis of Epilepsy. Completely inappropriate for a doctor to put you on meds.

You were dehydrated (a known trigger) , you drank an energy drink (stimulant), you were tired...

I would not (knowing what I know now) put my child (and I have a lovely one that is 18) on meds after one seizure. You could work on ways to raise your seizure threshold, because for some reason yours is lower at this time in your life. I have helped my daughter raise hers by making nutritional changes. You might consider your eating habits too.

 

[SteveUK]

Hi Kage and welcome to the forum,

What are a direct response from your doc! I know we all have good docs and bad docs but from reading your take on events yours was profoundly unprofessional and undignified! In an ideal situation your doc should have supported you and your mother in a more professional conduct, hearing the news like you did is always a bombshell of emotions and thoughts but it's my opinion that this should have perhaps been done in a more controlled manner. There are a few things that I can suggest:

• Consider being referred to an alternative neurologist, you have every right to a supportive neurologist, who may perhaps have a different approach to your condition
• Continue using this forum to gather information relevant to your type of epilepsy, venting your thoughts here are well worth it buddy
• Read up on 'your rights' with epilepsy
• Perhaps take a daily / weekly diary of events (it sounds like you had a significant 'aura' before your seizure which could be beneficial should you experience any additional seizures, taking notes of some 'signs' may help you prepare)
• And most importantly, continue daily events / fun activities to the best of your ability

If it helps I'm sure that there are plenty of individuals who use this forum who perhaps had a similar situation to yours, hopefully this was a one off experience.

I'm sorry to hear of your situation, perhaps take comfort in that you obviously have a supportive family who were there when you needed them .

Take it easy buddy.

Steve

 

[Nakamova]

Hi Kage6415,

I agree with Robin above -- the diagnosis of epilepsy was premature. Even though you may have been having other seizure-related symptoms in retrospect (the jerking and the headaches), ordinarily the decision to medicate isn't done until you've had more than one official seizure. Certainly you should have been given more information so that you could decide for yourself whether or not to go on meds, and what other options you might have for treatment. The meds are a blunt instrument, and once you are on them, it can be very difficult to go off.

Since you'll be seeing a new neurologist soon, I recommend that you start making a list of questions for him/her. Write down everything you're curious about, anything that seems unclear. I hope the new doc will have the time to listen, and answer everything to your satisfaction. And feel free to check in here anytime. The collective experience of the members here at CWE represents an amazing resource for information and advice. People here know an awful lot, and are great at filling in the blanks that a lot of doctors seem to leave empty.

Best,
Nakamova

 

[Inaara]

Hi Kage6415,

I agree with Robin above -- the diagnosis of epilepsy was premature. Even though you may have been having other seizure-related symptoms in retrospect (the jerking and the headaches), ordinarily the decision to medicate isn't done until you've had more than one official seizure. Certainly you should have been given more information so that you could decide for yourself whether or not to go on meds, and what other options you might have for treatment. The meds are a blunt instrument, and once you are on them, it can be very difficult to go off.

Since you'll be seeing a new neurologist soon, I recommend that you start making a list of questions for him/her. Write down everything you're curious about, anything that seems unclear. I hope the new doc will have the time to listen, and answer everything to your satisfaction. And feel free to check in here anytime. The collective experience of the members here at CWE represents an amazing resource for information and advice. People here know an awful lot, and are great at filling in the blanks that a lot of doctors seem to leave empty.

Best,
Nakamova

:agree:

I have an acquaintance who is just a couple years older than you who's recently had a seizure - only one - and who is being evaluated extensively. But they've not yet concluded whether or not the guy has epilepsy or not, primarily because, despite the test results and other things he's experienced, he's had only one seizure (which may have been partly precipitated by alcohol consumed during a party a few hours prior).

I agree with Robin and Nak and a few others in that if it were me, I would likely seek a second (or third, if possible) opinion. The meds are no joke and, if it were me, I wouldn't want to mess with them at such a young age unless it were absolutely, positively necessary. Then again, I don't like messing with them even at my age when I know it is absolutely necessary! :roflmao:

 

[Kage6415]

I think it was kepra that I was on at the time (I've been on so many different meds that it's hard to keep track of) all I did was sleep. I didn't eat or anything. I would get out of bed, take a shower, sit down on the couch or in bed and fall back asleep.

I lost about 20lbs because I wasn't doing anything other than sleeping and I looked like crap.

I would defently get a new dr, someone who takes the time to listen to you and not as you said- give you a script and then kick you out of the office. There is no sense in going to see him because I don't really consider him a dr at all. If the meds that he pescribed for you aren't working then he should realize that and get you on something else that will.

I also stay away from caffeen too. My neuro said it isn't good. I drink decaf coffee and they usually make decaf expresso and other sorts of fancy drinks like that too.

I still have to take a nap in the afternoon, only for about an hour. I don't know if it's an effect of the meds or not.

I hope things work out for you.

Ouch. Well lucky for me my oh-so loving doctor put me on this medication for only a year. I'm due to have an EEG in August; but if this new doctor we've found turns out to be better than the one we were referred to, we are definitely going to switch over.

That's the one issue I have with Keppra; the grogginess. At first he put me on a plan to take 750mg in the morning, and another one at night. Well when I started school, taking 750mg in the morning was just not an option. I was caught falling asleep in a few classes and sometimes I just skipped a class to go home and sleep. He then brought me down to 500mg for morning use, but that still made me suffer performance wise in school. So he said I could just snap the pills in half and take the first half in the morning, then the other after school, and then finally the 750mg at night.

But even with the 250mg in the morning, I still found it hard to wake up and stay focused so I had to have some sort of caffeine. Though now, I do try to limit it to how much I take in and I make sure I do so over an extended period of time; not just in a quick, 10 minute splurge.

 

[Kage6415]

Hi Kage and welcome to the forum,

• Consider being referred to an alternative neurologist, you have every right to a supportive neurologist, who may perhaps have a different approach to your condition
• Continue using this forum to gather information relevant to your type of epilepsy, venting your thoughts here are well worth it buddy
• Read up on 'your rights' with epilepsy
• Perhaps take a daily / weekly diary of events (it sounds like you had a significant 'aura' before your seizure which could be beneficial should you experience any additional seizures, taking notes of some 'signs' may help you prepare)
• And most importantly, continue daily events / fun activities to the best of your ability

Take it easy buddy.

Steve

Thanks for the advice; Like I've said in a previous post, I have an appointment with another neurologist who hopefully will answer more of our questions and try to give me a more thorough exam. I have heard of people being examined from head to toe; from a simple walking balance exercise to an oral test. The neurologist I had didn't do anything; it was simply going in for a quick EEG and MRI, then I was just given a slip for prescription Keppra, and my mother and I were sent on our way.

I will most definitely be sure to be more straight forward with this new doctor I'm seeing and hope that she's more open about it than my current one.

 

[Kage6415]

Hi Kage6415,

I agree with Robin above -- the diagnosis of epilepsy was premature. Even though you may have been having other seizure-related symptoms in retrospect (the jerking and the headaches), ordinarily the decision to medicate isn't done until you've had more than one official seizure. Certainly you should have been given more information so that you could decide for yourself whether or not to go on meds, and what other options you might have for treatment. The meds are a blunt instrument, and once you are on them, it can be very difficult to go off.

Since you'll be seeing a new neurologist soon, I recommend that you start making a list of questions for him/her. Write down everything you're curious about, anything that seems unclear. I hope the new doc will have the time to listen, and answer everything to your satisfaction. And feel free to check in here anytime. The collective experience of the members here at CWE represents an amazing resource for information and advice. People here know an awful lot, and are great at filling in the blanks that a lot of doctors seem to leave empty.

Best,
Nakamova

Thank you; I'm sure the new doctor will be a lot better. When I was going through a series of operations just barely a year ago, it required having daily nurse visits to my home and one of the nurses got along with me very well; we are still in contact and she's really just an older version of me and several of my other friends; when I told her about what has happened, she referred me to the neurologist I'm going to see soon. My mother and I have compiled a list of questions, so when we do go we will have a good sense of where to start in terms of what this means for me now and in the long run.

Thanks for the advice though. Very much appreciated.

 

[Kage6415]

:agree:

I agree with Robin and Nak and a few others in that if it were me, I would likely seek a second (or third, if possible) opinion. The meds are no joke and, if it were me, I wouldn't want to mess with them at such a young age unless it were absolutely, positively necessary. Then again, I don't like messing with them even at my age when I know it is absolutely necessary! :roflmao:

Yeah, that's why we're going to see a second doctor.

And yeah, I'm well aware that medication is nothing to be taken lightly; since I was in kindergarten, I've been on an artificial growth hormone that I have to take once a day, six times a week.

If there's any way I could weasel my way out of having to take a second life long drug for this supposed epilepsy I have, I would use that chance to not take it. But if I do in fact happen to have epilepsy and do require to take another drug to keep it in check, then so be it; it definitely wont stop me from living life tot he fullest.

 

[Ruth]

Hi Kage, I am glad to meet you. Epilepsy is heridetary in my family. That is when I started having seizures 61 years ago.

This forum was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.

Ask for a V-EEG to confirm that you have epilepsy. I am glad that you are going to see a better neurologist.

I am on Keppra. It keeps me awake, it gives me insonmia at night, like tonight. My other medicines make me sleepy. With Keppra, you need to take a Vitamin B-Complex. My doctor told me that when he first prescribed Keppra for me.

 

[Kage6415]

Hi Kage, I am glad to meet you. Epilepsy is heridetary in my family. That is when I started having seizures 61 years ago.

I'm sorry to hear that; sadly, I can't truly know if it's hereditary or not for me because I was adopted and I have no access to my biological parent's medical history.

When I do see this neurologist, I'm going to ask her to look at my EEG results and ask if it would be worth while to preform another one. Only problem I have is the cost of it; I'm not sure how much my father's military health insurance will cover; and I hear they are not that cheap.

Yeah a few other people have talked to me about taking certain vitamins to help combat the effects of Keppra; I just might start doing that but first I would much rather talk to this new neurologist first and see if I even need to be on Keppra.

 

[Ruth]

It really does not matter if it is hereditary or not in your family. I was just saying how I received this wonderful health problem. Are you getting support mentally and physically from your family? That is important I have received support from my family my whole life.

Most health insurance plans cover EEG's. Check it out to make sure it does, though.

 

[Kage6415]

It really does not matter if it is hereditary or not in your family. I was just saying how I received this wonderful health problem. Are you getting support mentally and physically from your family? That is important I have received support from my family my whole life.

Most health insurance plans cover EEG's. Check it out to make sure it does, though.

Yeah... my mother supports me a little too much... She can hardly let me walk up the street to the cafe with friends or something without having a panic attack and texting me every 5 minutes.