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Posted 7/29/2008 2:11 AM (GMT 0)

Well, I had my driving privileges back for two whole weeks, then I had a seizure last Monday and another one last Tuesday.  My neurologist increased my Keppra.

All in all, I am having a good day.

Hugs to all!

Carla

Posted 7/29/2008 3:10 AM (GMT 0)

Carla,

I am so sorry to hear that!  I went three years being seizure free, but I had one about three weeks ago.  My doc increased my Lamictal.

Anyway, I can totally sympathize with not being able to drive.  I am so sorry you had a taste of freedom, and then had it ripped away by the freakin' disease.

I hope the increase in Keppra helps you!

Best of luck,

Beth

Posted 7/29/2008 4:21 PM (GMT 0)
There must be something in the air/ water this month!  I've been having almost daily 'tics' and auras since my event of about a week and a half ago.  I went event free for 3-1/2 years since my major grand mal and craniotomy/ tumor resection.  I've been dragging my feet on getting my next EEG & don't know why.  I've been checking in here daily though.  It helps to talk to all of you.

I sort of willed my self to believe that even though I was on anticonvulsants, I didn't have a seizure disorder for all this time.  When I went to my PMD after my recent seizure, he kind of looked at me like I was a nut. ("What were you thinking?  Haven't you actually looked at any of your EEG's?")  I'm an RN and he actually thought I had reviewed my own record.  It's like politicians at work or sausage being made, some things you just don't want to see.  I finally sat down in his office and looked.  They are pretty bad. 

Anyhoo, I truly sympathize.  It was quite a disheartening thing for me to face as well.  I'm really having to come to terms with this all over again in a way, as I had such good control for so long, regained so much mobility & sort of felt like the entire thing was 'behind me'.  I sort of feel 'cast back into hell' this week.  I'll get over it, but it reeks this week.  I'm just glad you all are here.

Hugs,

David

Posted 7/30/2008 12:30 AM (GMT 0)

It does help to have our little support team.  This may sound silly, but for me,  having the seizures aren't all that bad, it's the consequences.

I am 57 years old and I feel like a child who has gotten caught doing something wrong and now I have to be punished.

At least we can laugh and cry together.

Hugs to all!

Carla

Posted 7/30/2008 10:18 AM (GMT 0)

Im so sorry Carla. I know you worked really hard to get your licence back. I sort-of know what it feels like (I had one just as the ink was drying on my licence... I never actually got it though) but hopefully you will be back on the road again soon

Darren

Posted 7/30/2008 2:04 PM (GMT 0)
sad  The party continues....I don't know if it was the massive thunder storm last night or what...after all these years, just ramping up doses or what, I honestly don't know.  I need to go get that EEG and MRI though.  Not a seizure, but a really close one again last night.  It was like a battle of wills with my brain for 20 minutes while I just sweated it out and twitched. What is going on?  Called my doc this morning, he called back almost right away, although I told his service to NOT have him call until office hours, unfortunately they know know me, so they called him at home...I hate being in the profession.

He feels that I'm spending too many hours laying awake and worrying to the point that I'm bringing these on myself, which is probably true.  Also I am not taking the diazepam at bed time that he Rx'd, I hate the stuff as it never wears off by morning and I have a hard enough time waking up as it is with Neurontin which I'm back on in full force (600mg 3x daily along with Topamax but STILL having these auras).  I guess I'll take it tonight!  I got an earful this morning about losing a driver's license if I had a seizure.  EEG scheduled for Friday.  Wish me luck.

HW

Posted 7/30/2008 10:48 PM (GMT 0)

Well HW, it sounds as if you had better follow your doctor's orders.  It sounds like he knows where to find you.  :-)

You are in my prayers,

Carla

Posted 7/31/2008 12:53 PM (GMT 0)

Tnx!!  Finally had a normal night last night!!  I guess it helps to do what you are told.  He's such a smart ass! tongue    He actually called around bed time (he's SUCH a mother hen).  So I slept and all is well this AM.  EEG tomorrow and no work until Monday, as ordered ((sigh)).

Thanks for your prayers & support.  Mine go with you all as well.  I can't believe this is happening still. confused

HW

Posted 8/1/2008 1:14 AM (GMT 0)

Maybe we will all get seizure free at the same time some day soon and stay that way forever.  That was a nice dream.  I'm awake now.

Hugs to all!

Carla

Posted 8/3/2008 12:54 AM (GMT 0)

I had seven seizures last night, back to back.  I have never had that many at once.  It was after I had been on the computer for about two hours.  I am going to avoid the computer until I can talk to my neurologist.

Hopefully, I will talk to you some time next week.

Hugs to all!

Carla

Posted 8/3/2008 10:06 AM (GMT 0)
Epilepsy, what can I say, other that it is a very cruel condition? Reading the last few posts, we are all given a false sense of security for a little while until (IT) decides to raise (IT'S) ugly head and enter our world AGAIN.

Please keep the dream alive, and yes we could all be - seizure free - one day soon. I was told on countless occasions that I never would be......I am now. My beautiful daughter has epilepsy and I'm the only person in her world that truly understands what it's like.

I really just want to say to you all, hang in there, research and new developments are happening everyday.

Take good care, Stuart
Posted 9/5/2008 5:42 PM (GMT 0)
Another Day- I have had days and nights like you. I went to a neurologist and he told me I had Dystonia. Look it up on the computer and take it to you doctor. Most doctors don't even know what it is. It was an answer to may prayers!!!!! hugalot
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