I think I have my questions ready for the doc on Thursday!

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momof3boys

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I finally get to go back to my neurologist on thursday! Its been a long year, to say the least! But at least 99% of my seizures have been controlled well with the Keppra XR! :)

But I got out all of my papers, and all my notes Ive been keeping, and have come up with a few questions I'd like to ask my dr on thursday.

Last time I saw him was in August 2011. It was in May 2011 that I was put back on the Keppra XR at 3000mgs a day, from taking regular Keppra at 2500mgs a day. When I was taking the Regular Keppra at 2500mgs a day, I was having the "pins and needles" sensations in my left hand and foot all the time. It would be so annoying! I had these also with the seizures I had in March 2011, a couple of months prior, when I was taken off all seizure medications for my VEEG.

When I went back in May 2011, I didnt get to see my neuro, but saw the PA. I told her about these sensations I was having since being put down to 2500mgs of Keppra, and asked to be put back to 3000mgs of Keppra XR. I was also having really bad headaches on the regular Keppra, and I knew that when my dr put me to the Keppra XR in November 2010, it took the headaches away, so I wanted to get back on that. (After my VEEG, he was weaning me off of Keppra to try Lamictal, and for that, i had to get off the Keppra XR, and be put on the Regular Keppra..so that was the reason I was still on the regular Keppra)

The PA agreed, and said that was fine. Within a few days, the pins and needles sensation went completely away, and all the headaches went away too.

Now the only thing that I dont get, is that when I did bring up the Pins and Needles sensations to the PA in May 2011, she said those sensations had NOTHING to do with seizures?! But when I researched it, it comes up as being part of Simple partial seizures. So Thats one thing Im going to ask and bring up. I did print off the papers to point out that the pins and needles sensations are part of simple partial seizures.


I also want to bring up that what he didnt see on the EEG when I had my VEEG in march, was the fact that my seizures are too deep within the brain to be picked up? Im finding alot of information that says Temporal lobe epilepsy is one of the harder types of epilepsy for EEGs to pick up seizures on. Which I also have printed out and will take with me.

And just the fact that the Keppra XR has controlled my seizures so well since being put back on it, it was thing I want to point out to my neuro.

My fear is that he will bring up wanting to try to wean me off the Keppra again. One thing I dont want to go through again. The seizures I had before, I was unconcious. The simple partial seizures, Im aware of whats going on, and I can feel all those sensations, and I have the fear, sadness, heart racing, feeling confused, tingling going up my body, head turning, jerking movements and the feeling in my stomach like I want to puke! Something I dont want to go through again! So Im just praying that he will allow me to go another year on the Keppra XR since things have been going well.

I see him once a year, and Im confident that things are going great with the Keppra XR.
 
Let us know how it goes. Remember, he works for you, not the other way around.
 
Thank you Nakamova! I will for sure update you all and let you know how things turned out.

Yes, I have to keep telling myself the same thing. The type of person I see him being, is the kind that says, "Im in charge, and I say what goes". But my gut is telling me different, and its great that i have papers that can back up my points to him.
 
Yeah to you for being prepared! Hope it goes well. I love being on the Keppra. Although I still have a ton of partials I don't have the nocturnal t/c's as much and no daytime t/c's.

And I wholeheartedly agree with Nakamovas advice!
 
I loved and agree to Nakamova's advice!

Even though I always read about preparing notes to take to the doctor, I never do it and props to you for doing that :) That will make sure you ask anything you had doubts on. I'm not saying PAs aren't qualified professionals, but they are sometimes too arrogant and not helpful at all!

My seizures come from between the Temporal and Frontal lobes, more towards the frontal lobe so it was hard to pick up on EEG sjust like yours.
 
Yeah once I started researching on simple partial seizures last year, I found I have alot of the symptoms, and to find that the tingling pens and needles sensation I have, is also related to simple partial seizures, is one thing I am going to for sure bring up to my neuro on thursday. I dont mind see the PA, but I get a better feeling with seeing my neuro. I feel better asking him the questions, rather than the PA. If you know what I mean? Plus, the last time I was there at their office, my neuro's nurses gave me some pointers. Just by increasing my Keppra, they said should point out if the seizures get better then it will justify them being Epileptic seizures, rather than non-epileptic seizures, like what my dr thought back in march 2011. So, all in all... I just want to be prepared and see what all has to be said.

Im praying he says things are going great, and I will be kept on the Keppra XR, and I can begin my hunt for a part time job, now that all three kids are in school! :)
 
I always write down questions or concerns I have for the doctor & when I see my Neurologist in December, he's going to get a surprise at my history. Never be afraid to ask questions, you are part of getting your seizures under control, only you know what you're experiencing, it's part of getting the meds you need and the diagnosis you need.
 
Good luck at your visit! It sounds like you are prepared :) Please let us know how things go!
 
Good luck tomorrow! And I noticed you mentioned starting to look for a part time job with all 3 kids in school now! That is such a big step too!
I think it's great that you are so super organized regarding your health. You are such a wonderful advocate for your own health. Keep us up to date.
 
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