hesitant to go on meds - advice?

[Zara-Newman]

I will have a look and see if I can find something tangible for you to read, all I seem to get up is people asking for advice on the internet about the subject.

Otherwise I will ask one of the neurologists that told me about it if I get another appointment with them if they can give me any information.

I was told that a lot of people showed abnormal EEGs and it wasn't epilepsy, but the potential to have seizures.
People more prone to them, I was told by two different doctors it was more common then you would think.

Both my mother and grandmother have abnormal EEGS, but have never had seizure problems.

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[Hobbes]

http://m.jnnp.bmj.com/content/76/suppl_2/ii2.full

Is a nice summary, grouping all eeg abnormalities is not helpful. Interictal epileptiform discharges are present in less than one percent of healthy adults without history of seizures and are very significant. The eeg results the OP posted sound like epileptiform discharges I've read about so I would not suggest to the OP that the EEG results can be blown off.

 

[Zara-Newman]

I am not suggesting anyone blows them off, but if anyone doesn't want to take straight forward medication due to side effects it wouldn't hurt to try other ways to control seizures first, expecially if they aren't regular.

When I first started having seizures I didn't start taking actual medication until I was sure it wasn't just a one time thing or a bad time.

Sometimes taking general medication isn't right for people, and a lot of the medications can make people feel worse than having the seizures.
I am sorry but the poster is right to be worried.
5 minutes looking at this forum and you can see people talking about horrendous side effects.

Some of the medications can screw you over for life, it isn't something to take lightly.

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[Zara-Newman]

I don't mean that to sound rude, honestly.

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[Hobbes]

Ok, I certainly read you wrong as it looked like a suggestion that abnormalities are insignificant. I do think humans are poor at evaluating risk, and IEDs are extremely important and for adults to have a history consistent with seizure and IEDs recorded is a time to be understanding the implications and discussing epilepsy treatment. I don't think the discussion of medicine is insignificant and never indicated that.

 

[Zara-Newman]

Of course abnormalities aren't insignificant.
But having an abnormal EEG doesn't mean you are epileptic and will be having seizures for the rest of your life.
It can mean lots of things, and a lot of people have abnormal EEGs.

I just think the idea of "you've had a period where you had two seizures, let's put you on these drugs that will possibly really screw you up" is a bit stupid, when in reality it could easily be a one off, since it could simply be down to extreme conditions.

People have seizures and abnormal scans after drinking too much.



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[Zara-Newman]

I just think we have different views on it, I only came to give my opinion. I wasn't being rude, and I didn't want a discussion on it.



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[Hobbes]

I am ok with different views. I don't really care if you are rude but I do think you had questionable advice so either I needed to learn something more about it OR the OP might be misled by leaving it unquestioned. This is a place for discussion, exploring differences and potential to learn new things is what drew me here. I used to follow a listserv (not for epilepsy) which I thought had some wacky commentaries, until I saw my child experience those same effects. The world has room for a lot of beliefs. The underlying science is worth looking at carefully.

 

[Zara-Newman]

I've had people on here tell me to stop taking my medication and start taking turmeric and ginger instead.
That is questionable advice.

Making sure you are not going to be taking medication that can genuinely ruin your life for no reason is not questionable in my eyes.

I am sorry, I have left this group before because people complain about my "questionable advice"

At the end of the day, if these seizures end up being isolated incidents and the OP has been fed various medication, how does anyone know? They would just assume the pills are working.

Then you end up on medication you don't need, that can easily mess you up, because we all know a lot of them are not nice.

If I had taken all these medications just to find out I may not have had repeats anyway I would be livid.
The tablets have messed me up worse than the epilepsy, at least the epilepsy buggers off 3 days out of the week.

I am not going to talk to you about it anymore, everyone is entitled to opinions and to give advice, whether or not they are the same as yours.

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[Hobbes]

Treatment for epilepsy is more than just medication although some people only do medication. Everyone is at a different point and many medications do the job for seizures at moderate levels for a significant percentage. We shouldn't disregard the good responses or the bad.

 

[super8]

So I thought I'd give a little update to my situation

Since my first post, I've still been seizure free. At this day, it's been over a year since I had my only two seizures
2.5 weeks ago I finally had an MRI done on my brain, and was told it'd take 7-10 days for results to come in. The good news is, I haven't gotten a call from my neuro or doctor about the MRI. The frustrating part is that, Neither my family doctor nor neuro have called me for any type of follow up or anything; in regards to my EEG that was done back in March, the recent MRI, or just a simple follow up
I'm now in a situation where I worry less about being diagnosed with epilepsy. It still crosses my mind here and there but doesn't antagonize me as bad as it used to

At this point in time, I'm wondering if I should book a follow up appointment myself? I know there's an epilepsy clinic in the area that requires a reference, and I'm wondering if it's worth going there or not. Or since I've been seizure free for over a year now, if I should just drop this whole situation unless I have another seizure anytime in the future

What are your opinions?

 

[valeriedl]

There have been times when I've had any sort of test done - x-ray, cat scan, MRI, EEG, blood and what ever else - that they will say 'We should have the results in about 2 weeks and we'll call you with the results.'

I'd wait and wait for them to call then I finally call them. The answer that I usually get is 'Oh we didn't find anything in the results and that's why we didn't call, sorry.' Don't think that is what happened with you though because I've gotten 'Oh yes, something did show up and the dr would like for you to come in. I don't know why you didn't get a call.'

I'd call them to find out the results just to see what came up in them and what the dr wants to do.

 

[iiris]

I was symptom free for almost a year after my first seizure and thought just like you. My EEG was abnormal but I felt fine so I didn't want medication. I was very worried about the side effects, just like you. I had had some occasional myoclonic jerks but I didn't think much of them. I thought it was normal to twitch if you hadn't had enough sleep or if you drank too much coffee or alcohol. About 10 months after my seizure the jerks suddenly became daily and very intense. They didn't need a trigger anymore. I'd have them no matter what I drank or how much I slept. After dealing with them for about 3 months, I finally decided that I had had enough and went to see a neurologist. I started on Keppra and I've never felt better.

I'm glad I didn't start medication right after my first seizure. I needed symptoms that would let me know if the meds are working or not. Now I feel confident that I'm taking the pills for a reason. If I had started taking them after my first seizure, I would have been very doubtful of their necessity.

So my advice is to do what you're doing now. Don't take medication until you feel like you need it. Just acknowledge that you're not out of the woods yet and one day you might have another seizure. And if you do have another seizure, don't worry too much about the medication and the side effects it might cause. A lot of people tolerate meds just fine but those people aren't usually the ones talking about their experiences since there's really nothing to tell

 

[super8]

There have been times when I've had any sort of test done - x-ray, cat scan, MRI, EEG, blood and what ever else - that they will say 'We should have the results in about 2 weeks and we'll call you with the results.'

I'd wait and wait for them to call then I finally call them. The answer that I usually get is 'Oh we didn't find anything in the results and that's why we didn't call, sorry.' Don't think that is what happened with you though because I've gotten 'Oh yes, something did show up and the dr would like for you to come in. I don't know why you didn't get a call.'

I'd call them to find out the results just to see what came up in them and what the dr wants to do.

knowing him, they'd just want me on the pills. and I'd tell him simply no.
i think for now I'm just going to wait it out

I was symptom free for almost a year after my first seizure and thought just like you. My EEG was abnormal but I felt fine so I didn't want medication. I was very worried about the side effects, just like you. I had had some occasional myoclonic jerks but I didn't think much of them. I thought it was normal to twitch if you hadn't had enough sleep or if you drank too much coffee or alcohol. About 10 months after my seizure the jerks suddenly became daily and very intense. They didn't need a trigger anymore. I'd have them no matter what I drank or how much I slept. After dealing with them for about 3 months, I finally decided that I had had enough and went to see a neurologist. I started on Keppra and I've never felt better.

I'm glad I didn't start medication right after my first seizure. I needed symptoms that would let me know if the meds are working or not. Now I feel confident that I'm taking the pills for a reason. If I had started taking them after my first seizure, I would have been very doubtful of their necessity.

So my advice is to do what you're doing now. Don't take medication until you feel like you need it. Just acknowledge that you're not out of the woods yet and one day you might have another seizure. And if you do have another seizure, don't worry too much about the medication and the side effects it might cause. A lot of people tolerate meds just fine but those people aren't usually the ones talking about their experiences since there's really nothing to tell

yeah I definitely don't think I'm out of the woods just yet but things do seem to be getting better..
I used to get random jerks/twitches quite often but noticed in the past couple months they've gone away for the most part. so i'm hoping thats a good sign

 

[Gloria]

Hello Super, Have you considered trying the Ketogenic diet or the Low Glycemic Index Treatment? It may be something that will help both the epilepsy and your overall health. The full Ketogenic diet is really difficult, but the Modified diet is like the Atkins 1st month diet of 15 or 20 grams of carbohydrates. Also, the Low Glycemic Index diet is a bit easier and is also used with stabilizing the blood sugar.
Did you have any blood sugar testing done in the hospital? Since, you were hiking and having late nights, you could have had a drop in your blood sugar. This can also be a trigger or a cause of a seizure. My daughter has metabolic difficulties, and as a young child, she would have an increase in seizures when she had the flu or and stomach problem that kept her from eating meals on time. Also, you could have become dehydrated.
The fact that the EEG is showing a spike and wave pattern is something to be concerned about and even though you never had epilepsy before this time, you don't know if your brain wave pattern has always been this way or if it only just began showing this abnormality.
I hope you remain well and fully recover.

 

[super8]

Hello Super, Have you considered trying the Ketogenic diet or the Low Glycemic Index Treatment? It may be something that will help both the epilepsy and your overall health. The full Ketogenic diet is really difficult, but the Modified diet is like the Atkins 1st month diet of 15 or 20 grams of carbohydrates. Also, the Low Glycemic Index diet is a bit easier and is also used with stabilizing the blood sugar.
Did you have any blood sugar testing done in the hospital? Since, you were hiking and having late nights, you could have had a drop in your blood sugar. This can also be a trigger or a cause of a seizure. My daughter has metabolic difficulties, and as a young child, she would have an increase in seizures when she had the flu or and stomach problem that kept her from eating meals on time. Also, you could have become dehydrated.
The fact that the EEG is showing a spike and wave pattern is something to be concerned about and even though you never had epilepsy before this time, you don't know if your brain wave pattern has always been this way or if it only just began showing this abnormality.
I hope you remain well and fully recover.

I've heard of it but never tried it out. its something i'd consider if my epilepsy started to affect me. but as of right now, i'll stick to how I normally eat. i don't think i can limit myself to 20g of carbs a day..they're way too good haha
i can't remember if i had any blood sugar testing done. the entire night was pretty hazy.


on a side note, I have an appointment with my neuro in a couple weeks. finally set one up 8 months after he said he would...

 

[Brighton]

Hi
Am interested in your post. I just had seizure having been 4 years free and before that 16 years Med and seizure free. Have just got into triathlon and been road biking for 2 years am considering going on lamotrigine which neurologist recommended 4 years back. What meds did you go on? Did mri come back normal? Mine said some frontal lobe assymetry

 

[super8]

I haven't gone on any meds yet, I still think there is no reason for me to be on any despite what my EEG says. i still think that my only seizures were triggered by pushing my body waaaaaay past the limits, so until something goes downhil from here, I won't go on any.
this past year I've cleaned up my diet a bit. it's still not perfect, but I eat healthy for the most part. cut back a decent amount of alcohol. I still drink but not as much as I did back then. slowly getting back into the gym as well. getting more sleep each night, etc etc

I haven't been told my MRI results yet. I'm seeing my neuro on wednesday so I'll know then

 

[Brighton]

Thanks. Let me
Know how MRI goes.

 

[super8]

I'm expecting that'll it come back normal. over here the doctors will only call you back after a test if it means bad news. and the only reason I got an appt with my neuro is because I went to see my fam doctor for an unrelated issue, and he asked me if I've seen my neuro or not...


but I'll ask for specific results/answers when I see him