Not sure if this was a seizure, please confirm

[gbpackerfan]

Hi all. So I've gone from dilantin to clonazepam to dilantin to zonisamide to Dilantin and now I'm on oxcarbazepine. I've only ever had seizures in my sleep, but things seem to be getting worse. I stayed up only 3 hours past my normal sleep time, was a couple hours late on taking my meds. When I got home, I was having this weird tunnel vision with colorful lights swirling around. When I layers down on my bed, I immediately felt like my body was dead weight. Everything seemed so heavy that I couldn't move my hands, feet, not anything but my eyelids. When I closed my eyes, all I saw was flashing colors and lights, when I opened them, still had colorful lights but they were surrounding what I was looking at. It only lasted a few minutes before I could my hands, feet, legs and arms. It felt almost euphoric, no sore muscles like I get after having tonic clonic ones. It scares me to think that my seizures have progressed to this point. Has anyone of you ever experienced anything like this?
Gbpackerfan

 

[Fedup]

gbpackerfan

I get nocturnal seizures as well and what you are describing sounds like your body letting you know you have gone to far. I have found for myself if I do not take my meds at a certain time, I have an hours grace in which to take them. So of the things you have described I have experienced. You need to remember the medication we take stays in our body at a certain level and we have to keep to that level.

 

[Cint]

Has anyone of you ever experienced anything like this?
Gbpackerfan

Many times. And that is because the meds only worked for me for a little while. Or it could be the incorrect dose of carbamazepine and that could definitely make seizures worse when combining it with Dilantin.

Using the wrong medication.
Many seizure medications have useful actions against a number of different seizure types. But some medicines are not right for certain types of seizures. Carbamazepine (Tegretol), for example is usually good for treating complex partial seizures, but not absence seizures. Ethosuximide (Zarontin) is good for absence, but not complex partial seizures. Since absence and complex partial seizures can occasionally be confused with each other, there is a chance for using the wrong medicine.

Inadequate or incorrect doses of medicine.
People vary widely in their response to seizure medicines. Every medicine has a suggested dosage range, but that range is too high for some and too low for others. If a dose that is too high for an individual is used, a person will have too many side effects. A dose that is too low may lead to seizures.

 

[gbpackerfan]

I have monthly blood work to check my levels and I know I goofed up by taking the meds late. Actually in the process of weening myself off Dilantin from 400mg/ day and just started the oxcarbazepine a few weeks ago. My issue is that I've never had any kind of seizure while awake and never had any form of aura at all. This was a very different thing for me.

 

[Ruth]

Sorry to hear about your seizures. The way you described it, it was a seizure or seizures.

Write it down and tell it to your neurologist. He/she might want to do another EEG. Write down anymore unusual seizures and talk to your doctor about it.

 

[gbpackerfan]

Thanks Ruth. I have a sleep study scheduled with video EEG. I have messaged my neuro. He is also referring me to a sleep medicine doctor. I'm just scared that this has progressed to me having seizures while awake.

 

[Ruth]

You won't know if it has changed until you have the test.

Think Positive!!

 

[gbpackerfan]

I called my neuro and I have an appointment today, I'm actually on my way now.

 

[masterjen]

Good luck, and let us know how you make out.

 

[Emerald]

Good luck! No matter what, everything will work out.

 

[valeriedl]

My med schedule is 7am, 2pm and 7pm. I try to take my meds within an hour of that time. If you take your meds too early or late is could be like your taking a 'double dose' of your meds which isn't good.

It's possible that it was a seizure but it was due to when you took your meds and hopefully not that they have changed.

Hope you get some good results.

 

[gbpackerfan]

So I have an EEG scheduled for Monday. My neuro thinks it was a seizure, but not 'bilateral' which is what I usually have, because I did not lose consciousness. I am on multiple meds for multiple health issues from multiple docs. My neuro went through all my meds with me and has me changing and/or eliminating some of them because of possible interactions. Out of the 4 different docs that prescribe me meds and the pharmacy, thank goodness for him... I'll see how this goes and let you guys know. Thank you all so very much for the continued support and insight. I know that many of you know I'm going through some tough times and it is very comforting to me to know that you all are here for me.
Dan

 

[Emerald]

I know you're going through a stressful time right now, but make sure to set aside time to have fun! Even if I'm feeling lousy, watching my brothers (who are always funny by accident) cheers me up really quick. While having e is a pain, have fun and always TRY to find the good in things! Best of luck with everything!
-Emerald

 

[Ruth]

I know you're going through a stressful time right now, but make sure to set aside time to have fun! Even if I'm feeling lousy, watching my brothers (who are always funny by accident) cheers me up really quick. While having e is a pain, have fun and always TRY to find the good in things!

Changing your mind and thinking of something else will work. It does for me, Think Positive. What do you like? Music, poetry or talking to us or another friend.

:cheers:

 

[gbpackerfan]

wow, its been a crazy couple of weeks. my memory of the last couple of weeks is pretty hazy. I've been reading through this post because I do not really remember making or responding to this thread. I am going to start a new thread for my experiences over the last couple weeks.

 

[valeriedl]

My memory is horrible too. We watch tv shows weekly and at times I can't remember what happened on it the week before and don't understand what's going on.

After I have seizures my memory is very bad. I might not remember what happened the day before or even things that happened a few hours before the seizure.

 

[gbpackerfan]

Valeriedl,
I'm sorry. I have had memory issues my whole life. I always just thought that some people remember certain things more clearly than others but all the people around me, friends and family have always, continuously remembered many more things much clearer than myself.