Introduction

[Sparkles]

Hi. I was diagnosed with complex migraines in around 2006/2007. But then had "episodes" of falling, lack of ability to speak, trembling hands, followed by memory loss and fatigue and sometimes some anger. After seeing another neurologist I was then diagnosed with partial seizure disorder "not otherwise specified" due to lack of findings on EEGs, ct scans, and MRIs. I take Topomax and maybe that's helping. It's been less than 2 years since the seizure diagnoses and the seizures, if that's what they are, were coming every 6-12 months, then started coming every 3-6 weeks, then it was 5 months without - maybe due to the Topamax increase - and last week I had 2 in 3 days, but think its because I had a vacation and messed up on my med maybe.

The teaching hospital where I see the neuros, the residents clinic, doesn't really seem to know what to do with me... They thought maybe these were something like pseudo seizures for a while, which sounded freaky but I didn't care as long as they fixed them, but when they found out I fell on my face and fractured my nose along with a few other reasons I can't remember they ruled that out. I've fallen and broken my thumb, injured my shoulder, been bruised, black eyes, just look and feel like I've been beaten up. I've been taken from work via EMTs 4 times, 3 in less than six months so that they pushed me to take FMLA leave which partially ends today. Tomorrow I go back part time, and I'm so ready. But they don't and won't know of the incidents last week. One of the falls occurred in the kitchen where the oven was on, I was preparing food, my glasses were in the food. My parents got worried unable to reach me and walked into that. My kids are with me every other week and were not with me when that scene happened. My parents helped me to the couch where I was struggling to "come to" and just have little, almost no, memory of this and I was agitated telling then to leave and now they are angry with me.

Anyway, I don't really know what's going on any more, I don't have epilepsy, but I supposedly have seizures. I get headaches for up to five days after the episode and I have migraines anyway which ironically have been much better the last few years. I feel like my life is spinning and spinning out of control and feel that I'm at risk of losing my job, my health insurance, my license, my parents, my independence. And in looking for some information this weekend, I found this site. I read some and decided to just jump right in. I know very little about seizures, I've tried to read online but it takes away from my favorite state of mind - denial. I want to live there, dwell there, stay there, but these darn things seem to want something else entirely.

My name is Patty, I'll be 44 next week, I'm a single mom of two teens, apparently with some kind of possible seizure disorder. I also have two dogs. I'm going to immerse myself in more of the site until I go back to my favorite state of denial again. And I'm a researcher too, just in the social sciences. But researching this feels uncomfortable.

TMI? Sorry! No one in my life understands what's going on.... I'm guessing that's not so unusual?

 

[JaneC]

Not TMI at all Patty. Glad.you've found CWE. I'm only slowly learning about E and others will probably be able to advise you better but that sure sounds like seizures. I think your options really are to wait to see if things settle down, go back to your neuro - or find a new one if that's an option. Hope things improve.

 

[jyearta]

Hi and Welcome,

Sorry to hear all that you are going through. -----HUGS-----

It's bad enough to have these health issues and then to have family not to understand. Just know you are not alone.

I have E. and have had many of the tests they all came back normal, this isn't unusual. It was at teaching hosp. in Atlanta where their test showed where my seizures originate at.

Keep reading and asking questions until you find some answers.

I have learned so much from this forum.

 

[Sandie]

There are so many different types of seizures. I think you should research further and also read some of the posts on this site because, I could be wrong but it sure as heck sounds like you are having some sort of epileptic episode to me. That is my opinion only and you really do need to investigate further if things don't settle down. Take care and good look.

 

[BadMoonRising!]

I am brand new to this community as well patty, my name is Kevin. I've had almost 20 years to deal with learning about my epilepsy though, and the only truly solid fact i've been able to settle upon is that there are no truly solid facts. It does sound like your episodes are seizures. As scary and intimidating as that word is, it's a very broad term, and it sounds like you've experienced 3 or 4 different kinds of seizures. You don't need to see a doctor, you need to see a neurologist. (Of which i'm neither) Thankfully, you have family with good instincts who obviously can tell when something just isn't quite right and check up on you. Another resource you have that you may not know how lucky you are to have is you mentioned 2 dogs. I no longer have one, but the ones i've had in the past required no special training to detect when i was about to have a seizure, they just knew. Apparently this is fairly common. It was more a matter of training myself and my family to notice the dog getting agitated for no apparent reason than really training her! Anyways, I ramble on. Epilepsy is a frightening prospect, but you sound like you have all the ingredients necessary to deal with it effectively, supportive family, personal responsibility and intellect. Just don't let the label of epileptic scare you into putting on blinders, ignorance is not bliss in this case. Good Luck Patty!!!

 

[BadMoonRising!]

I am very excited to finally find what looks like a genuine community of people who understand and sympathize with what i deal with on a daily basis, some of which make me thankful for how well my seizures have been controlled rather than just raging at the injustice of every single seizure as though the world in general just has a bone to pick with me! I do have it better than many, so for that i'm thankful. I truly hope i can meet some people from in and around Winnipeg, as i'd like to stop being so much of a shut-in....being anti-social is becoming a bit of an issue for me lately, one i'm unaccustomed to and unwilling to seek pharmaceutical aid for. So any winnipeggers out there cursing the current snowstorm....hello! ;-)

 

[Nakamova]

Hi Sparkles, just wanted to add my welcome to the others, and encourage you to ask questions of the CWE community. Lots of support here, and folks who "get it." Also encourage you to push your doctors for a clearer picture of what's going on, and perhaps seek out second or third opinions if necessary. What you describe sounds sound like epilepsy (same as "seizure disorder" -- epilepsy just means that more than one seizure has occurred), and you deserved to feel confident in and optimistic about your care.

Best,
Nakamova

 

[Sparkles]

Thanks so much for the replies. Hmmm... No more ignorance is bliss, eh? I'll work on it. My first day back at work is going very well. People are commenting that I look much better. I'd been really run down before I left for a break.

I do see a neurologist - well an attending doctor (neuro) over sees the care and I see his residents. Something like that. It's a residency clinic at the epilepsy center (maybe not a center, but something like that).

I was told that "these things will show their face soon enough". Whatever that means. After reading more and more here and elsewhere, well, the only thing that makes me question whether they are seizures is the duration. I've been "out of it" for up to 2 hours. Now, am I really unconscious or semi-conscious that whole time? I don't think so, I think my memory is the problem - right before, through, and after the "episode" (still having trouble embracing the term seizure). But there have been a few where I've had semi unconsciousness for more than 30 minutes.

I will keep reading and researching and again, thank you all so very much!

 

[Nakamova]

I've been "out of it" for up to 2 hours. Now, am I really unconscious or semi-conscious that whole time? I don't think so, I think my memory is the problem - right before, through, and after the "episode" (still having trouble embracing the term seizure). But there have been a few where I've had semi unconsciousness for more than 30 minutes.

After a tonic-clonic seizure, the brain and body need rest -- you might emerge from the seizure and immediately go back to sleep for some time. or you might slowly return to consciousness but in a piecemeal -- for instance you might have a conversation and appear fully aware, but have no memory of the conversation later. It's not uncommon to have little to zero memory of the events before during and after the seizure. There have been times where I wouldn't know that I had a seizure if not for other people letting me know what had happened.

 

[Sparkles]

After a tonic-clonic seizure, the brain and body need rest -- you might emerge from the seizure and immediately go back to sleep for some time. or you might slowly return to consciousness but in a piecemeal -- for instance you might have a conversation and appear fully aware, but have no memory of the conversation later. It's not uncommon to have little to zero memory of the events before during and after the seizure. There have been times where I wouldn't know that I had a seizure if not for other people letting me know what had happened.

Huh. I figured the memory after and during would go. It's the memory before that kind of freaks me out. I once wrote a really good memo / mini report for a meeting and don't remember writing it. It sounds like me, but a more formal me. Actually, it's a really good little report. There have been times in the past couple years where I thought I was losing my mind...