Constant Epileptic Feeling Since Quitting Meds

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Travis435

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Hey everyone, I'm new to this forum and am curious if anyone knows the solution to my problem (no doctors have been able to help). As a brief history, I had peti-mal seizures growing up and one grand-mal seizure, was put on Tegretol and the seizures went away after a year (eventually was on 1600 mg a day). Later on in adult life I was switched to Carbatrol, no problems. In 2010, I decided to get off Carbatrol due to my doctor's warnings of bone thinning. As I drew to the end of the six week withdrawal period, I suddenly felt very epileptic while driving, I had to pull over. Ever since then, and I mean constantly for the past 3 1/2 years, I have had trouble thinking and focusing, cannot drive more than 15 minutes without having to pull over (I get very disoriented and confused), my emotions are all over the place (depressed, happy, depressed, angry, etc.), and often times a slight pain in my head. Most of the time I feel confused, and I forget things quite frequently. I have been to see several neurologists, none of them have been able to determine what the problem is. There may have been epileptic activity right after I got off meds (the EEG showed it), but on EEGs and MRIs since then, there have been no signs of epilepsy, even though I still have these extreme symptoms. I have been on Lamictal (gave me severe rashes), Topamax (severe anxiety), Gapentin (suicidal thoughts), and a couple of others that also had major side effects. None of these helped with the overall problems I already had. I am currently not on anything at the moment. Exercise seems to help a little bit, but otherwise it's still constant. Has anyone else been through a similar situation as this? All of the doctors have looked at me like I'm crazy, like I'm making this up. Please, any advice anyone can offer is greatly appreciated :)
 
It sounds like you are still having seizure activity even tho there were no signs of it on your last EEG. Often times people with epilepsy do have "normal" EEGs. Usually, an MRI is performed to identify any brain disorder that may have provoked the seizures, like brain tumor or arteriovenous malformation. Or once it is determined that a patient does have epilepsy, then it will be used to determine which type of seizures they have. It's also used before brain surgery for seizures.

So if you're feeling these extreme symptoms, find a dr. who will take you seriously. You could be having Simple Partial seizures and it needs to be treated. And please don't drive, especially if you get confused and disoriented every 15 minutes.

Check out this website:
http://www.epilepsy.com/epilepsy/seizure_simplepartial
 
Thank you Cint, thankfully my wife does all of the driving for me. I forgot to mention that I tried Carbatrol and Tegretol again and my brain rejected them. And when I say constant, and I mean at all times I'm feeling this way. Simple Partial seizures could definitely be what it is, is that something that can be felt 24/7? Thank you!
 
Travis435, Much of where you are at I can certainly understand. One thing we really have to be certain of is that we are going to a doctor and neurologist who makes us feel comfortable. Cint said, "find a dr. who will take you seriously" and that is SO TRUE. Take you seriously and help you to understand where you are at and where you need to be going.

Forgetting things quite frequently?? Have you tried carrying a note pad and a pen... making notes for things one needs to remember has really been a plus for me. Even though I do not remember to check my note pad, I do catch things I wrote down prior when i write down new notes/messages. Different ways of helping ones memory is a good thing to find :) one just has to try this and that. Asking people here can also be a plus!
 
As a brief history, I had peti-mal seizures growing up and one grand-mal seizure
Click to expand...

any explanation given to you as to why you've never been given an epilepsy diagnosis? that is a bit bizarre, and quite possibly due to just the wrong docs. unfortunately they're not all good at what they do.

i was diagnosed after two grand mals, even tho the eeg showed nothing (was 'slightly abnormal with slow waves' but not a big concern), and cat scan and mri's both showed nothing (mri did show an arachnoid cyst but it was coincidental and not seizure-related). years of simple partials and grand mals followed, with eeg/mri results showing nothing that causes seizures. most of us on here will reiterate that it's constant research and having the right docs and specialists.
ie for me: seizures 17 years before the lesion, which had been there pre-birth, was found. it had been there all along but this time it was a different radiologist from a way bigger city - she did two different slices than 7 prior had done and voila! the reason was given for my epilepsy.
as cad said keep track of as much as you can, and as cint said it does sound like seizure activity. 24 hours a day tho? that is not normal no matter what type of seizure - imo meds are vital right now, partials can turn into a grand mal at any moment.
give yourself a better chance travis - daily and for your future.
 
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