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Confused, Neuros disagree

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Unread 12-30-2012, 04:38 PM   #1
elusious
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Confused Confused, Neuros disagree

Hello

I started having migraines at age twelve. They were called "classic", I would have colored auras sometimes followed my an intense throbbing on one side of my head. My mom took me to a neuro and I began taking Topamax daily to control the frequency. I became a teenager who rebelled a lot. I didn't take my medicine regularly and began experimenting with "recreational" drugs.

Feb. 2005, I'm at a friends house, I'm sleep deprived and had a little alcohol to drink. I remember talking to my friend and something happened, I'm not sure what. She tells me I need to sleep, to rest because I'm "messed up". I try changing pants and lose muscle coordination, felt like the world slipped sideways and I felt like.. I was going to die. I remember seeing white, and blank. The next thing I know I'm sitting not where I started, my friend is telling me she's going to take me to the emergency room.

I felt confused, not even sure of who I was.

According to my friend, when I blanked, I began screaming "God help me" or "God, please don't let me die". She says I wandered around, tried to open the front door, screaming the whole time.

At the ER they found nothing wrong with me, alcohol level was .1% mcg, serum glucose of 117. I don't remember really being there, like a dream, kind of. They kept insisting I had taken some hallucingenic drug, which I hadn't. My mom even persisted in this line of questioning for weeks afterwards. My neuro ordered a MRI and EEG, both of which came back normal.

Fast forward to June 2006. I'm now living with two roommates. I'm cooking and telling a story, and then I'm not (apparently). According to them, I began repeating the same sentence and waving the spatula I was cooking with in some weird way. I don't remember it. They urged me to see my neuro, so I did.

At the time, I didn't think it was connected, but I worked as a cook at McDonald's. I would argue with fellow employees that they hadn't told me to cook something they had. I have moments where I just feel dazed and like, well, I just woke up from a dream. Like someone hit 'reset' without my permission.

My neuro was concerned that I was having complex partial seizures. I began medicine. My mom was resistent to believing that it was seizures. Neuro asked me not to drive, and I live where.. its hard not to. I made plans with one of my roommates to move to Wisconsin where she's from. The town has most places within walking distance, and I found a neuro in my insurance network and made a future appointment.

Fast forward to that appointment. I have all of my previous neuros notes, new neuro barely looks at them, listens to me briefly and then tells me, (drumroll please...)

You are not having seizures. You do not have epilepsy. You have "complicated migraines".

I leave so confused that I think my head is spinning. I just gave up.

I worked at a McDonald's right down the road from where I was living. I was at work one day and a male manager said something and I flipped out. I remember crying, and I ended up in the break room. A female manager tells me basically she doesn't think I'm having seizures either. I never go back to work there.

My grandmother falls and loses part of her memory in September/October that year, so I move back to be with family.

I seek no further treatment.

Then to now.. I see colors frequently. Balls, streaks, purples, reds, yellows, greens bright and dull. No severe headaches follow. I lose my balance frequently, my partner says I have intense moodswings and that I talk gibberish when I think I'm being plain, but I barely remember what I say after these 'fights'. I drool and feel like my brain is burning when these 'fights' happen. I also repeat myself, usually "please, help me" or some piece of that phrase.

Wow.. sorry for how long this is, and yet there are a lot more 'episodes' with slightly different qualities.. But I hope some of you can shed some light. Am I having seizures? Am I just crazy? (As my partner seems to think during these things) or.. what?

All opinions are welcomed, I'm just so tired of feeling ashamed and confused.
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Unread 12-31-2012, 07:25 AM   #2
Porkette
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Hi elusions,
Welcome to the forum! When I was a kids I started having migraine headaches and that in turn led to absence (petit mal) sz. and then 2 yrs. later I started having complex partial sz. also.
I'm no Dr. but I've had sz. for 40 yrs. now and what you are describing sounds like you are having complex partial and maybe absence sz. also.
When I start to have a complex partial sz. I will get a nervous feeling in my stomach, then I start to see colors flashing back and forth in my eyes, I'm still conscious during this time and then a couple seconds later I will blank out but I will sometimes wander around work or home and when the sz. is over I will find myself in a different room and I'm confused for a few seconds until I realize I've had a sz. My husband can tell when I have this type of sz. because I smack my lips during the sz. so if anyone is around you and this happens ask them if you wander around, smack your lips, or pull at your clothing this is all signs of a complex partial sz.
When I have an absence (petit mal) sz. I will just have a daydream look on my face for about 30 seconds at the most and that's all that happens.
I've had many e.e.g.'s done and it didn't show any problems and that's because the brain damage was to deep in my brain and the e.e.g. couldn't pick up any of the problems.
It wasn't until I had the e.e.g. with electrodes put directly on my brain that they found I had a scar on the right temporal lobe of my brain.
I have seen many neuros over the yrs. but my advice to you is to see an Epileptologist at an Epilepsy Center. I've gotten more help from an Epileptologist than any neuro I ever saw and these Drs. specialize in epilepsy so they know how to treat a person better.
I was on topamax just like you for a short time and I found it caused me to have more sz. that's when I started vimpat and that has stopped most of my complex partial sz. and I take vitamin B12 1000 mcg. once a day and that has also helped to reduce my sz.
Sorry for carrying on so long but I wanted to let you know that it sounds like you may be having complex partial sz. I hope I'm wrong and I wish you the best of luck. May God Bless You!

Sue
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Unread 01-01-2013, 02:37 AM   #3
Darlene
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Wink Nice to meet you!!

elusious,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Sue has given you some wonderful advice. I feel you go see an Epileptologist, because they are better capable of reading test they will run on you. Also avoid bright flashing lights, like at a theater, it can cause a seizure.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.
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"Life without God is like an unsharpened pencil -- it has no point.
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Unread 01-01-2013, 04:04 PM   #4
tos8
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Yeah that sounds like a complex partial. I have had many where aparently I can get very nasty with whoever. Obvisly they know its not me because im not like that and im not my normal self. Ill end up in a diffrent rooms, ive eatn almost a complete meal and didnt know it until i got out of the sz. and looked down and saw there was food in front of me and it was almost gone (that was probley the weirdest one lol). Or ive had times when they have told me somthing or to do somthing and I dont remember it. I can hold conversations while having a complex partial, but there usally not a normal one and my speech is slurred. After any of it im usally confused for a minute and have to get myself together and then ill relise i had a seizure. Ill see colors or "things" i think befor they usally happen. But they come on quick and I cant react to it and if you dont know I have sz. then you dont know im having one, or if your not paying attention, because they dont last long enough. Ive had 4 eegs and only 1 showed that I was having them. Its VERY important you find a good dr!
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