buhh - new with some questions.

[corsch]

Well, I'm new to this epilepsy thing and I'm still not sure if I have it. I'm not coming here for a diagnoses but more or less to figure out what i should do should I have it.

Anyway, I had my first what doctors believe to be a seizure. I was playing a video game with a friend and the next thing I know. I'm in the car on the way to the hospital. Apparently what happened is I started convulsing in my upper body and then I fell out of my chair and proceed to hit my head on a chest and continued to convulse and hit my head on the floor and then my parents took me to the hospital. I got 2 stitches on my eyebrow and got an CT scan to check everything out and it was fine. They want me to come in for an EEG to see if I do have epilepsy but my parents won't really do anything (aka medicate) even if I do so they don't see a point to get one.

Now to me that would sound like a seizure and so I started thinking about if I've had them before and I've had episodes where my upper body will convulse and I have no control over them and they come at random times. The last time I had one was in math class and I didn't really feel like myself for like an hour beforehand so it sounds like a seizure from what i've read but at the same time it doesn't because it doesn't last very long (usually a couple of seconds), I just don't have any control over my body really.

So, I guess I'm asking anyone that wants to answer if that sounds like a seizure. If it does, should I try and convince my parents to get an EEG?

Also, this seams like an awesome community. I'll try and stick around.

 

[epileric]

Welcome to the site

What you described sounds like a seizure to me. I definitely think you should get an EEG but realize that even if you have seizures they don't always show up. I do have seizures & I've had 1 or 2 EEGs that didn't show anything. If they do show up it should help you & the doc know where it is.

If your parents are scared of medications there are some alternative treatments that might help you http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments From what I've seen though they usually work best in conjunction with medications.

 

[corsch]

What you described sounds like a seizure to me. I definitely think you should get an EEG but realize that even if you have seizures they don't always show up. I do have seizures & I've had 1 or 2 EEGs that didn't show anything. If they do show up it should help you & the doc know where it is.

If your parents are scared of medications there are some alternative treatments that might help you From what I've seen though they usually work best in conjunction with medications.

By chance, do you know how much EEGs cost? my dad does happen to be a doctor and has heard what happens on anti-e meds so i don't think he wants to medicate in that respect. I just want some answers on how to prevent it with or with out meds.

 

[epileric]

Sorry, I have no clue about cost in the US (I'm in Canada).

If your dads a doc he should know that different meds effect people differently & that not everyone gets all the possible side-effects.

To lessen your chances of seizures you basically have to keep the rest of your body balanced & healthy. Get a fair amount of sleep, avoid stress, avoid stimulants & alcohol.

This thread might give you more of an idea what to do http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

 

[corsch]

Sorry, I have no clue about cost in the US (I'm in Canada).

If your dads a doc he should know that different meds effect people differently & that not everyone gets all the possible side-effects.

To lessen your chances of seizures you basically have to keep the rest of your body balanced & healthy. Get a fair amount of sleep, avoid stress, avoid stimulants & alcohol.

This thread might give you more of an idea what to do

Hes an er doc so its kinda different than a family practice. thanks for the help!

 

[Zoofemme]

Hello and welcome to the forum

EEG costs vary so it is hard to say what it might cost your family.

A CT scan is not a definitive test either. It is used to rule out things like tumors, aneurysms, bleeding, etc. An MRI is a bit more in-depth as I understand it...more likely to pick up on the scarring or lesions that might be the guilty culprits that are causing the misfiring. Again, not always definitive. I think most doctors look at a much broader picture. Tests such as those mentioned, previous medical history,family history, blood tests, witnessed seizures and the events surrounding them.

Hopefully your parents will come around to having the tests done, if for no other reason than to have E ruled out. Seizures CAN change over time if you have E. That has happened to a few of us on here.

I hope you enjoy your stay here...as I'm sure you found from surfing the site, the folks here are quite supportive and a great group to be around

 

[corsch]

Hello and welcome to the forum

EEG costs vary so it is hard to say what it might cost your family.

A CT scan is not a definitive test either. It is used to rule out things like tumors, aneurysms, bleeding, etc. An MRI is a bit more in-depth as I understand it...more likely to pick up on the scarring or lesions that might be the guilty culprits that are causing the misfiring. Again, not always definitive. I think most doctors look at a much broader picture. Tests such as those mentioned, previous medical history,family history, blood tests, witnessed seizures and the events surrounding them.

Hopefully your parents will come around to having the tests done, if for no other reason than to have E ruled out. Seizures CAN change over time if you have E. That has happened to a few of us on here.

I hope you enjoy your stay here...as I'm sure you found from surfing the site, the folks here are quite supportive and a great group to be around

They wanted to get the CT to check to make sure there was no bleeding because I hit my head. I guess I should have said that earlier. Thanks for the help and support.

 

[PhylisFeinerJohnson]

I think keeping a diary tracking your seizures and the activities you were doing at the time would be helpful.

Could be you have photosensitive seizures. If you have photosensitive epilepsy, certain types of flickering or flashing light may incite a seizure. The trigger could be exposure to television screens due to the flicker or rolling images, computer monitors, certain video games or TV broadcasts containing rapid flashes, even alternating patterns of different colors, in addition to intense strobe lights.

And surprisingly, seizures may be triggered by natural light, such as sunlight, especially when shimmering off water, even sun flickering through trees or through the slats of Venetian blinds.

As for the EEG, that particular test is not the be all and end all either. It's even less informative than a CAT Scan. To find out more about testing options go to http://www.coping-with-epilepsy.com/forums/f22/beyond-eegs-diagnostic-tools-epilepsy-9149/ Good luck...

 

[Cint]

Hes an er doc so its kinda different than a family practice. thanks for the help!

From what you described, it does sound like a seizure to me.
It seems to me that since your father is an ER doc he would want you to not have any seizures at all, even if that means taking medications. A lot of us have ended up in the ER due to seizures and some of us with serious injuries as a result from seizures before we were put on any medicines.

That's what happened to me and I had my CT scan, EEg and other testing done while I was in the hospital recuperating from the serious burns I had when I suffered my 1st TC seizure years ago. They started out as complex partial, where I would be staring into space for a few seconds/minutes and slowly progressed into TC (grand mal). So even if the convulsing only lasts a few seconds, it can be seizures.
Do you have a good health insurance plan that would cover the cost of a CT scan or/and an EEG?

And as Zoofemmee said, seizures can change over time.

 

[Nakamova]

The very brief sensations you describe sound like seizures too, perhaps simple or complex partials (the majority of seizures in epilepsy do not involve convulsions). The fact that you've had these brief ones in the past, and have now had a tonic c-lonic (seizure with convulsions) is a big red flag -- it measn that your seizures are probably progressing, and that it's a good idea to find a way to treat them sooner rather than later. Although an EEG is not absolutely necessary for diagnosis of seizure disorder, it can help confirm what your clinical experiences (seizures sensations ) are indicating.

If you have insurance, then your EEG should be mostly covered. If you don't, then you're probably looking at several hundred dollars to pay the hospital and the EEG tech.

 

[Jan4you]

Oh my dear.. you are up against seizures perhaps but your parents..geez.
Get the EEG and know that sometimes it will be "normal" so many docs want a 3 day video EEG or at least a 24 hour one.

Next have your parents go with you when the doctor gives you his results.

I am so sorry you are going through all this... HUGS to you my dear

Warmly, Jan

 

[skillefer]

Hi corsh! Welcome to CWE.

Ok...first of all, what you are describing does sound like seizure activity. As for a diagnosis, those are usually made after 2 reported seizures. An eeg may or may not show seizure activity. I've had e for over 30 years and only had 1 abnormal eeg. So your dad may be wanting to take a wait and see approach. After all, eeg's won't necessarily be able to say with absolute certainty whether you have e or not.
As for your dad being wary of e meds...I understand. The meds can have bad side effects. Notice I said can...not definitely do. For many of us, meds work great. For others, not so great. The key is, to try to figure out what is triggering your seizures, and then avoid the triggers if you can. Sounds like you might be photosensitive (video games, strobe lights, flickering lights, possibly even just seeing repeated patterns like checkerboards). Make sure that you get at least 7 hours of sleep every night, try to deal with stress is a healthy way, avoid caffeine and other stimulants. Try to eat a healthy diet.

 

[Endless]

I understand that cost may be a factor in getting an EEG, and could be concerning to your parents. Hopefully you have health insurance?

Is there a reason you think your parents wouldn't allow medication? If you have seizures (and that sure sounds like one), there are reasons to go on medication. Preventing ongoing seizures can help it from creating permanent changes in your brain. If you are treated early on there is a better chance of controlling the seizures. If it waits years it has a bigger chance of being what they call "intractable," or uncontrollable.

Would your parents be open to going to a neurologist with you to discuss the pros and cons of tests and medication, so at least you can make an informed decision together?

 

[corsch]

I've read all of the responses and,
We don't have health insurance so an EEG wouldn't be covered.

I'm not completely sure if my dad is against meds but he says that it's like "opening pandoras box." after consulting a friend at the hospital. He also doesn't think that I had a seizure, he thinks that I just stood up too fast and hit my head, then started seizing because of a concussion or something

I'll try and keep a long on when they happen (I started using seizure tracker) and I guess thats helped. I had a couple more today in both bio and math class.

I'm not exactly sure how to ask them to figure out what is wrong with me because we don't have health insurance so it'd be out of pocket and they're putting 2 kids through college getting ready for the third.

 

[RobinN]

Anyone can have a single seizure.
I would have to agree with your dad about the meds. We had terrible results with them. No parent wants anything to be wrong with their child. I suggest that you have a discussion though with them. Keep the communication open, and acknowledge their fears too.

Consider your nutrition. You are young so I have to presume that you eat a Standard American Diet. There is a lot of research and anecdotal evidence that nutrition plays a huge role in neurological health.

Curious why your dad is an ER doctor and you don't have family insurance?

 

[corsch]

Anyone can have a single seizure.
I would have to agree with your dad about the meds. We had terrible results with them. No parent wants anything to be wrong with their child. I suggest that you have a discussion though with them. Keep the communication open, and acknowledge their fears too.

Consider your nutrition. You are young so I have to presume that you eat a Standard American Diet. There is a lot of research and anecdotal evidence that nutrition plays a huge role in neurological health.

Curious why your dad is an ER doctor and you don't have family insurance?

If by typical American diet you mean lots of red meats, fast food, lots of soda and stuff then I'm on the same page but I don't eat a whole lot of red meat, I hardly ever eat fast food and my soda consumption is probably 1-3 a week.

For the health insurance note, you'd probably have a better guess than me. I'm not exactly sure why we don't, I just know that we don't.

 

[Rae1889]

I agree with everyone. it sounds like a seizure to me. and the one in your math class sounds like Myoclonic Seizures.

I'd say its up to YOU how you want to proceed. If YOU want meds, or if YOU want to try something alternative first. like diets or neurofeedback. its YOUR body and you are the boss of it.

 

[corsch]

I agree with everyone. it sounds like a seizure to me. and the one in your math class sounds like Myoclonic Seizures.

I'd say its up to YOU how you want to proceed. If YOU want meds, or if YOU want to try something alternative first. like diets or neurofeedback. its YOUR body and you are the boss of it.

Just from the youtube videos that i've watched about Myoclonic Seizures, they share a resemblance. Like I had one today when I was walking from the bathroom to biology. I just kinda slowed down, twitched two or three times and then kept walking. I never fall or really loose consciousness they just happen.

I know it's my body but I don't have the money to pay for all of this, and on top of that i'm a minor. I've just never had to deal with something like this. I'll try and keep it under control

 

[corsch]

I have no idea where to post this so hopefully someone will still be interested in this thread. Anyway, I've been doing some lurking around the forums and I came across a post and the user said one of their triggers is low blood sugar. So I started thinking "When do most of my episodes happen?" and I concluded that they are usually happening when I'm extremely hungry or tired most of the time I'm both. Could I only actually have 2 triggers? I've seen strobe lights sense having my seizure and I haven't been effected.

If I remember correctly. The other day when I had an episode in my both my math and biology class. I only had some chicken at lunch (1150) and thats after bio, I also didn't have anything to eat for breakfast other than a water or something the episode in my math class happened at around 230.

 

[skillefer]

Yes, you can have more then one trigger.

I'm photosensitive, as well as having triggers of low blood sugar, and lack of sleep. It sounds like low blood sugar might be a trigger for you...as well as the lack of sleep. If that's the case, make sure you get a minimum of 7 hours of sleep every night (stick to a sleeping schedule), and eat a small meal every 2 hours. (by small meal, I mean a protein and complex carb that will fit on a dessert plate....so NO white bread, rice, pasta, potato chips, or white sugar.....) Hope this helps!