Saw neuro today

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horsehead

horsehead

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I had a really good visit. He wa very nice and said he didn't care what the other doctors said and that he wanted to make sure he cared for me. Starting me on keppra , i was on it before the doctors in iowa took me off all my meds when they were working. Is going to do a sleep deprived eeg on the 20th. That should be fun,not. He is also setting up an mri. finally someone is listening to me. He said regardless of what the eeg said in the past he believes i have seizures
 
I'm glad you had a good visit and like the doc. As you probably know, a normal eeg is pretty much meaningless for those of us with epilepsy. Some seizures can't be detected with surface electrodes even when you're actually having a seizure. If you're not having a seizure there's pretty much nothing to detect. I guess it would be like giving a person a breathalyzer two days after he had been falling down drunk and then saying that he never drinks!
 
Arnie I had 4 seizures during a video eeg that came back normal so thats when i was taken off all meds. i had seizures daily for months after that and then they slowed a bit. after 3 years i finally was able to see a neuro again and was put on klonipin but as you have probably seen with my resent posts I'm having quite a few seizures again
 
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I have read here a lot that people have had seizures during an eeg and they didn't show up you'd think the neuros would get a clue card that that happens
 
I find it interesting that you say seizures don't show up on an eeg. My Dilantin kept me seizure free for years. Then my GP had me see a neurologist since Parke-Davis changed to an extended release formula. Had an eeg and the neurologist said that I had seizure activity "all over" so I had to stay on medication. The Dilantin controls my gran mals and phenobarbital controls petit mals. Just recently I discovered by a quirky twist of fate that upping my dose of phenobarbital relieves the feeling of anxiety I've battled with all my life.

Our brains our so incredibly interesting.

Glad you found a good doctor. My GP is fantastic, helped me more with my epilepsy and the side effects of Dilantin than all but one of the neurologists. Having a doctor who actually listens to you (because in the end it is your brain and only you know how it is treating you) is so very important.

Wishing you all the best!
 
dolores i guess quite a few people on here have seizures that dont show up on the eegs. It seems to me if that happens as often as it seems to that they wouldn't put so much stock in them. Thanks it is really nice to finally have a neuro look at me like i'm not a nut.
 
So any ideas how I'm gonna stay awake all night. I've never done that before
 
I had complex partials and a grand mal, and had an EEG--clear. They put me on meds anyway and it kept me seizure free for 17 years. I'm having a lot of problems again and had another EEG--definitely NOT clear, lots of abnormal activity. If i had one of those doctors that assumes one normal EEG means you don't have epilepsy, I would have been having grand mals for 17 years. Good to have a doctor who evaluates the symptoms and not just an EEG result!!
 
yes it was horrible for me for years. They stopped my meds for the test. had seizures a day and a half later. Had seizures everyday after that for quite awhile since they wouldn't put me back on meds. I had no seizures at all before the tests while on the meds. the neuro told me the only reason the meds seemed to work is because it was in my head that they would.
 
horsehead, I'm glad to hear you've found a doctor who will help. I know you've been seeking relief for a long, long time.

So any ideas how I'm gonna stay awake all night. I've never done that before
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When I did my most recent one, they said I should get no more than 4 hours sleep. So I was allowed a little "nap time". I rented some movies to help me stay up, and made sure to set my alarm for fairly early in the morning, in case I did drift off.

You might find other tips here:
http://www.coping-with-epilepsy.com/forums/f23/upcoming-sleep-deprived-eeg-16847/
http://www.coping-with-epilepsy.com...ved-eeg-staying-up-all-night-any-ideas-22606/
 
Thanks for the links. hopefully that will help. i've fallen asleep sitting up before so i may have to stand most of the night. anybody want to stay up with me
 
Just over a year ago, I had two sleep deprived EEGs. I hated it ... trying to stay awake, no caffeine, no chocolate, nothing good on hotel tv. Yuck!
 
sjconner said:
Just over a year ago, I had two sleep deprived EEGs. I hated it ... trying to stay awake, no caffeine, no chocolate, nothing good on hotel tv. Yuck!
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I had one done a few months ago and the staff here didn't tell me not to eat or drink coffe. I also took all my meds in the morning. Lamictal 600mg, trileptal 1200mg and Topamax 400mg.

The lady that did the EEG, MRI and MRA said it was ok and didn't really matter since I was sleep deprived. It came out with lots of spikes my nuero said. He also said with having taken my meds that was unusual.
 
my directions was no caffine ni chocolate. had another seizure yesterday have not started kappra yet cause hubby wanted to watch me for side effect. cant handle light again today. very disconnected. hard to talk
 
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