First Epileptologist Visit.

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Supra

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She was fantastic! One of the first things she said was that she hates Dilantin.
Alright! We have something in common! We discussed my episodes and then she took the usual strength tests along with a physical that I thought was more in depth than my cardiologists. We found a very interesting problem with my left eye. She couldn't define it but said that the strokes had done far more damage than I had been told. That led to a talk about Dr. Oliver Sacks which was great fun. We also talked about Jill Bolte Taylor's video about strokes on TedTalks. I'm a fan of neurology so this whole thing is ironically interesting to me.
Anyway, she ordered an EEG and gave me a choice of meds.
Yes a choice.
I hope you fine people can help me out here.
Trileptal.
Keppra.
Neurotonin.
Thanks.

P.S.
My girlfriend called and apologized. She said when I had a seizure in front of her she was frightened and didn't know what to do.
I told her just to be there when the seizure ends.
 
So great that you found someone who actually treats you so well.

As far as helping you out with your choosing a med, I'd recommend looking up the side-effects (and the % of people effected by each side-effect) of each one & deciding. Everyone reacts differently to each medication so I don't know if it is something people can really help with. I know I hated keppra- the rage, forgetfulness, depression & dizziness were all awful. However I would never tell someone not to try it since not everyone gets those effects & can be helped by it.

Also it's so great how your girlfriend feels a responsibility towards you during a seizure. I've had many that never talked to me again after seeing one- she sounds like a keeper:rock:
 
Thanks Eric.
You're right. I've spent 6 hours reading about the pros and cons of each drug.
And alot of what I've been reading says that everyone is affected differently.
Perhaps we should remove the poll.
As far as GF goes?
I wonder who the apology was for. Truly for me or just to make her feel better.
Time will tell.
 
To be honest I don't see much use in the poll but I think hearing peoples experiences with each drug still can give a better idea what might happen & what to watch for.
 
Research those meds! They all have their pro's and con's and Neurontin does have the possibility to become addictive, (it is also used as a pain/nerve blocker) and Keppra, if not used with Vit B will bring out the "Kepp-rage" in a person even just after being on it for a week. (I kicked a hole in the wall when I got mad at the phone co.) :oops: and I've never been on Trileptal so I couldn't tell ya anything about that one.
GOOD LUCK though. :)
 
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I agree with Eric, I don't see much use for the polls, as everyone reacts differently to meds and they can be used for different reasons. Anyway, as far as those listed, currently I'm taking 3000 mgs. of Keppra along with a low dosage of Topamax, and that seems to work best for me so far. I have tried Dilantin- stopped working, Phenobarbitol-allergic reaction, Tegretol-stopped working, Felbatol-extreme migraine headaches, Neurontin, Lamictal, Sabril (before it was on the market, as a trial) bad reaction, suicidal tendencies, Trileptal-low sodium. The Topomax is also called dopamax and once before I was on a much higher dosage and did feel like a dope addict. I couldn't think, remember my name, etc, so my neuro lowered the dosage of Topomax and increased my Keppra, which is working much better for me.
 
I've agreed with Eric since his first post.
Mods, can we remove the poll.

I feel I'm leaning towards Keppra. I'm just afraid to lose my full head of hair!
I may shave my head this weekend to see if I could get away with the Bruce Willis look.
:dontknow:
 
Supra said:
I've agreed with Eric since his first post.
Mods, can we remove the poll.

I feel I'm leaning towards Keppra. I'm just afraid to lose my full head of hair!
I may shave my head this weekend to see if I could get away with the Bruce Willis look.
:dontknow:
Click to expand...

Why would you shave it if you don't know if you could loose it? Sounds like such an empty sacrifice. I've got long thick hair that has lots of volume in it even after being on Keppra for 2 1/2 yrs and many other AED's that 'say' they cause hair loss.
Besides Bruce Willis is so not 'hot' with his head all shaven like that.
 
I couldn't figure out how to delete the poll (if anyone else can please feel free) so I just closed it.

Sorry,:dontknow: best I could do.

As for the hair issue, I used to have really long hair until I had to go for an EEG so I went for the Kojak look
kojak.jpg


I've since let it grow into the Bruce Willis look but the fun I had when friends didn't recognize me was great.
 
Right. May as well have fun with it. To be honest I'll be doing the vitamin supplements with the tea conditioner.
 
Poll deleted.

Fantastic that your new epi talks to you and not at you. :mrt:
 
Thank you Bernard.
I'd like to thjink Dr. Taylor and I have a good rapport. There should be more like her.
 
Hey, Supra,

It's GREAT that you found a good epi. That's half the battle right there. I have been on all three - Keppra, Neurontin, and Trileptal. There's a long list of side effects for all three, and everybody has a different reaction to all of them. Including how well they work, as well as side effects. So, I'll just speak to how they affected me.

On keppra, I was just pissed off. All the time. And it didn't control my seizures.

Neurontin, I was on it for nerve pain before my diagnosis of epilepsy. It made me realllllly sleepy. And the dosage wasn't high enough to control seizures.

Trileptal makes me really depressed, and really really sleepy and just plain exhausted, also blurry vision, and my brain turned to mush. But did a great job controlling my seizures. Lots of people get along just great on this drug, though.

The doc is putting me back on Lamictal. It made me really tired, but it left my brain intact. Bad part is I got a rash. We're ramping up more slowly to see if we can avoid it this time.

Good luck, on whichever one you choose.
 
everyone is different, that's for sure! I have never had a problem with Keppra (2.500) and I have been on it for a couple of years. Also took Neurontin for about a year and it did wonders for my nerve pain, but nothing for seizures. Good luck!!
 
Tonight is my first on Neurontin and yes I am sleepy. But hopefully I will sleep and not be tossing and turning all night with seizures. We're also putting together a 24 hr ambulatory EEG. Doc says my nightime shakes are not epilepsy but my blackout episodes are.
Methinks this is going to be a long, strange trip.
 
What does your doc think the nighttime shakes are if they're not epilepsy-related?
 
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