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Confused- no convulsions but Dr said possible epilepsy- sorry, this is long

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Posted 9/6/2006 12:17 PM (GMT 0)

Hi everybody,

As the title of my post says, I'm a bit confused. I got diagnosed with chronic fatigue syndrome a few years ago, but I'm not so sure that's what I have anymore.  In my search to figure out what's up, I kind of lost patience a couple of weeks ago. I told my new primary care doctor some of my symptoms and pressured him to take a guess, and he came back with "temporal lobe epilepsy" (and made sure I knew that he didn't have experience dealing with symptoms like these).  I thanked him for his effort, but I dismissed epilepsy at the time.  My question to people here is whether or not I could have a form of epilepsy.

For some reason I've been blocking a lot of symptoms out of my head, but at the end of July I started paying more attention to what they were so I could get some help.  Here are the ones I can think of:

- It's like I blank out then suddenly become aware of myself. I'll just find myself staring but not looking at anything, and sometimes to figure out what I was trying to do, I have to rely on my memory of my earlier thoughts or look for clues around me-- sorry if that made no sense.

* I've noticed this happening while trying to shower, make coffee, read

* I don't think this happens when I'm engaged in conversation with another person.  Instead, the next one seems to happen a lot:

- I'll be talking about something with someone, and I do NOT forget that we had been talking, I just forget what it was about.

- I just lose my thoughts sometimes.  It's like the information I need is in my short term memory, and as I try to grab it and use it, it starts trying to escape, and I can't seem to move fast enough to grab it before it escapes

- Sometimes I'm very forgetful.  But sometimes I'm not.

- Alternating cycles of insomnia and hypersomnia

Alright alright, there was ONCE where I had convulsions.  I just started feeling really sick, then I tried to walk to my bed to lie down and was staggering everywhere, then I thought I'd made it to my bed and just collapsed and started convulsing.  It took me a few minutes to realize that I'd missed my bed and gotten the window seat, and when I could, I got into bed.  I felt fine again 30 minutes later.

- This was in early 2004.  Since then, I've felt the way I felt then before the convulsions started, but I haven't had convulsions.

So my basic question is: is epilepsy something I should look into?  What does this sound like?  Any ideas?

Also, I know I was having some problems starting in 2000, but I'm not sure if they were like this.  All I know is that things got a lot worse, at least for a while, in 2003 after I took Flagyl (an antibiotic) for a week. 

Any insight would be greatly appreciated.  Thanks and take care.

- Kremit

Posted 9/6/2006 4:45 PM (GMT 0)
Based on what you have written, I would ask for your PCP for a referral to a neuropsychiatrist (that doesn't mean you're crazy, the same way going to see an ophthalmologist doesn't mean you're blind).

Best wishes.
Posted 9/7/2006 2:12 PM (GMT 0)
Thanks for the responses. I'm completely lost in this area- I didn't even know that some of symptoms fell under the "neurological" category until August. I know that's pretty stupid, but this is just foreign territory to me. No tests have been done yet, but I will look into seeing a neuropsychiatrist (see, I didn't know that term either). Thanks again.

Kremit
Posted 9/12/2006 9:50 PM (GMT 0)
I would ask your Doctor for a referral to a neuropsychiatrist. They have alot of insight on this issure. And they would know what test for to take to see what is causing this problem. Hope the best for you.

A friend

Ken
Posted 9/12/2006 10:52 PM (GMT 0)
Kremit. it COULD be epilepsy, but you really need to find out! Keep a diary of how you felt, if you thought you blanked out, how long did it last, were you aware of anything in particular beforehand (triggers, auras!!)then see a neuro! Your doc should be able to send you to see someone for testing etc.! Most of all DONT DELAY! It helps if you know what you're dealing with, then go from there!! I've had brain surgery myself (lesionectomy) on the left temporal lobe last year. All is well now, I couldn't have asked for a better result, but I had some symptons similar to yours!! Mine was a benign tumour so I found out yesterday ( I actually asked for it to be written down! ) They took out the tumour & a small piece of brain-a bit scary, but I made my choice, & I'm glad I did!! maggie28
Posted 9/13/2006 12:03 AM (GMT 0)
Mandi, Ken, and Maggie: thank you for responding. I've been kind of moping around with this and other issues that have come up. I can't help but wonder what's next! I really appreciate your advice and support; this is kind of a rough time and you're helping a lot.

My primary care physician did refer me to a neurologist, but I'm really not comfortable driving that far when this stuff is going on. I'm not sure exactly how to find a neuropsychiatrist, but I've at least found the phone numbers of some neurologists around here (I'm assuming there's a difference between the two? Maybe not...). I guess that's a better place to start than nowhere.

And Maggie- thanks for giving me the push to act on this ASAP. I needed that. At the rate I was going, who knows how long it would have taken me to decide to do something.

Best,
- Kremit
Posted 9/13/2006 3:02 AM (GMT 0)
Kremit, no worries!! I too, needed a little push to make up my mind whether I was going to put up with this E, or do something about it!! It took me years ( I was too accepting of it, & more & more pills! ) but when I got a little push from my husband ( all those drugs will evetually maim you, or worse! ) everything went well! maggie28
Posted 9/18/2006 9:59 PM (GMT 0)
I would definately do what you can to go see a neuro. It all sounds too familiar to me, I was dxed late in the game for not recognizing symptoms. You definately have to get the ball rolling. Also the fact you have convulsed before is a good indicator that something could be going on. Good luck with everything! Tracy :)
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