Saw my new neuro again...

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jemsister

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He seemed a bit better this time. Hoping so.

We made plans for increasing the vimpat and then in a few weeks (providing everything goes well) decreasing the trileptal, and after that dropping the dilantin.

We also discussed PNES, and he confirmed that PNES don't happen at night unless you actually wake up and then something triggers it when you're awake. But if you sleep through it, then it is an epileptic seizure. He talked about the fact that some people get both PNES and ES. I started wondering about it because my seizures have been so intractable. But after thinking longer on it, I realized that the meds have helped me to a degree. I was having many seizures a week before being treated. He said this wouldn't happen if they were PNES. So who knows if I am having both or not. I don't feel traumatized or feel like I would have a reason to have PNES, but could you have them without having a traumatic experience?

He is setting me up with an appointment with the epileptologist down at the epilepsy center, to discuss the possibility of pursuing brain surgery. Now that he's setting the appointment, I am starting to have second thoughts. Bleh. I think ultimately it would be smart to at least pursue the possibility, regardless of my decision in the end. But the idea makes me nervous.

Anyway, that was my appointment. Hoping I don't react to vimpat the way I reacted to keppra... Is vimpat chemically related to keppra in any way?
 
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Hi Josie -
Glad your appt with the neuro went well & hope you don't have to wait to long before you see the epitiologist.

Have you spoken to your hubby & family about the possiblity of having the surgery?
Any input you can get from the ones you are close to does help.
When my neuro 1st suggested surgery as an option I discussed it with my parents & they agreed it was good idea to look into the surgery if there was a chance it could help control the seizures. I also told my siblings & grandparents that I was thinking of having the brain surgery & they all agreed surgery was the best option.
 
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Me and Hubby have discussed it a bit. You might say we're still in the discussion phase. I'm hoping he can be the one to take me to the epileptologist, so that we can have our questions answered together. I think the idea makes him nervous, but he is open to discussion and consideration. I have mentioned it briefly from time to time with other family members. It's a daunting subject.

I haven't talked to the kids about it. They are pretty young--my oldest is barely 7. Not sure how I would approach that one. I probably wouldn't bring it up with them unless I had decided I was going to go through with it and it was really going to happen.

Of course there's the chance that I don't qualify. They expect that I will, but there's no way to know for sure without all the testing.

They think I probably wouldn't be able to see him before January, what with the holidays and all. That's fine with me. The season is busy enough without throwing all this doctor crap into the mix.
 
They think I probably wouldn't be able to see him before January, what with the holidays and all. That's fine with me. The season is busy enough without throwing all this doctor crap into the mix.
That will be good if you can see the epitiologist by January as it isnt to long to wait. When my neuro gave me the referral to see an epitiologist I rang the epitiologists clinic & couldn't get in for 7 months (I saw my neuro in Nov 2009, saw the epitiologist June 2010). Once I saw the epitiologist & he said he thought I was a good candidate I only had to wait another 3 months before I started the testing then it all went pretty fast by then.
 
Wow, 7 months! I hope it doesn't take that long. D= Oh well, I guess--if it does, it does. Nice that once they got rolling it all moved pretty quick though.
 
The guy I am supposed to be seeing is a guy I saw once before, a few years back. He suggested the inpatient VEEG and brain surgery then, but I was not ready to even consider it. I hope I don't get a tongue lashing about not coming down... =P He seemed cool though. But you never know... I wonder how often people "chicken out" like I did.
 
I hope the Vimpat works for you Josie. It's considered to work differently from Keppra --Vimpat works via sodium channels and Keppra through calcium channels. Keep in mind that the pharmafolks aren't exactly sure how any of the anti-seizure meds work.
 
HOping all goes well at your appt.

I wouldn't about deciding not to have the surgery earlier, YOU have to be ready for that.
 
That's true. =P I'll probably feel better after I talk to the guy. Heck, he probably gets it all the time. Brain surgery isn't the most comforting phrase in most people's books.
 
I learned something new today. I never knew about nocturnal seizures. I haven't met a neuro that has explained much at all. I was always wondering if I had seizures when I slept, because I would wake up and feel like I got done having one. Finally had it clarified that I do have them in my sleep. When I read about psychogenic seizures I was pretty surprised that it isn't unusual to have both epileptic ones as well. But it sounds like your neuro is giving you some good feedback. I hope the Vimpat starts helping, these meds are a guessing game.
 
I learned something new today. I never knew about nocturnal seizures. I haven't met a neuro that has explained much at all. I was always wondering if I had seizures when I slept, because I would wake up and feel like I got done having one. Finally had it clarified that I do have them in my sleep. When I read about psychogenic seizures I was pretty surprised that it isn't unusual to have both epileptic ones as well. But it sounds like your neuro is giving you some good feedback. I hope the Vimpat starts helping, these meds are a guessing game.

I didn't know about nocturnal seizures until I started having them, and Hubby was the witness. I'd never know to this day if he hadn't been there to see them. I have them as much as I have daytime ones, if not more.

I only learned about epileptic seizures and PNES cohabiting the same person within the last couple of weeks. I find it kind of interesting, but it makes sense--having epilepsy certainly doesn't exempt you from having other issues.

Guessing game--tell me about it! =P
 
I always started having problems with my sleep after my first seizure. I would wake up confused doing repetitive motions. Lately I seem to have tonics around the same time at night, wakes my g/f up. I have no idea I am doing it, but I feel like I ran a marathon or something. Have you seen a consistency in your seizures?
 
I always started having problems with my sleep after my first seizure. I would wake up confused doing repetitive motions. Lately I seem to have tonics around the same time at night, wakes my g/f up. I have no idea I am doing it, but I feel like I ran a marathon or something. Have you seen a consistency in your seizures?

I haven't noticed any consistency as far as time of night or anything like that. But my memory is pretty fuzzy, so mostly what I have in my mind is what's been happening lately, which is all up in the air. And I've never been good at keeping a seizure journal (trying to amend that...). I almost never wake up to my seizures, but I have once or twice woken up coming out of one. I'll just wake up really tired and be groggy all day. When I have seizures during the day, it really just depends, but I seem to be a little more prone to them in the AM or early PM. (ETA: I should clarify that the reason I don't know about consistency at night is because Hubby never thought to note the time.)

Do you have a GM every night, or just the same time of night when you have one? Sounds like it would suck pretty hardcore to wake up like that. =/
 
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Lately they have been happening nightly. Though I think things are dying down. It is really freaky and some meds got adjusted so that could be the culprit. Mentally I wake up in the freakiest haze. Last night it happened around 5 am, the night before that 4 am. I wouldn't have gotten that down unless I was told it happened. Keeping the seizure diary is pretty helpful, but I don't blame you for losing track. If im alone and I have them the last thing I want to do is write anything. Just want to lay down and wait for my brain to level out.
 
I'm glad you feel like they are dying down. What a pain! I agree, I never think to look at the clock or do anything like that. I always write it down a day or two later and have to do some estimation based on what I may have been doing at the time (we keep a pretty regular routine).
 
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