VEEG Day 2

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jemsister

jemsister

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Well, I checked in yesterday morning and have been hangin' out. He stopped meds fast. All I had yesterday was my night dose of trileptal and lamictal, and today he's cut off all meds. Needless to say I feel really freakin' weird. The combination if not having the meds and doing nothing but lay in bed all day is really making me feel blah. Uncoordinated, jittery, clammy, and occasionally queasy. I just feel really strange.

Tonight I'm being sleep deprived from 12 to 5. Guess I'll be needing coffee!

So far my EEG results have been normal, and no seizures yet. He's mentioned that they may need to keep me over the weekend if I don't start performing. Reeelly want to have some seizures now so that I don't have to stay longer.

So, hmm, things I didn't consider beforehand:

The glue they used smelled like paint thinner, and I was smelling it all day yesterday, which was making me nauseated.

They don't provide any caffeinated beverages except coffee, and the coffee is really bad. Reeeeeeally bad. Might have to send Hubs out for reinforcements for tonight. They don't have any cola at all. The only soft drinks they have are sierra mist and ginger ale.

I hope my coordination returns soon so that I can draw or fold. =P It just took me 20 minutes to type this!
 
Good luck! I hope you get results ASAP.
 
Just an idea, but I was able to get caffeinated drinks besides coffee. My doc just had to give the ok, and my nurses would pick me up something from the cafeteria when they went on break and I would pay them for it, they would also bring me late night snacks to help me stay up during the sleep deprivation! I normally don't drink caffeinated drinks, but my doctor said give it a try plus it helped me stay up!

That glue does stink! Hope you get the info you need quickly!
 
Still no seizures. =/ Totally exhausted, but gotta stay awake for 3 more hours. So sleepy! Time to find some scary tv.
 
I hope things start to go your way soon. It took me 4 days off of meds before any thing showed up. It is hard because all you can do is lay in bed. Hang in there!!
 
Thanks for the encouragement, Huskymom--I need it! Still no seizures! =( They're keeping me 'til Monday. Such a bummer, but I hope the extra days make the difference. I think they're going to sleep dep me again tonight. =P
 
Good luck Josie
I hope you will be able to 'perform' soon & get enough information so you don't have to stay in over the weekend.
 
Are they at least trying anything to help you bring on a seizure? Even though my seizures aren't related to the strobe lights, the doctor ordered it to be done twice a day to help try and get a seizure to stir up. It didn't bring any on for me but it definately worked to help put some stress on my brain for a little while each time.

Good luck!
 
I got my seizures finally! They're discharging me tomorrow. Here's the rundown.

Yesterday, my husband startled a seizure out of me, but the EEG didn't pick it up. So at first my neurologist thought this was a NES. That was pretty disappointing. He was prepared to restart meds and send me home yesterday, but we decided to give it one more day, and good thing we did. I had three night seizures--two partials and a tonic-clonic. I don't remember anything, but they said I woke up slightly after all of them. They gave me ativan and I slept for about six hours.

The seizures showed on the EEG. Rather than being temporal lobe as originally diagnosed, they happened in the frontal, and he said they were not clearly one side or the other, but were rather midline. He also thinks that they can happen quite deep, and that would explain why the EEG didn't show the first one I had.

So he thinks they are partial seizures and not generalized, based on what he's seeing (which is what we have always gone with). They've restarted my meds and plan to cut me loose tomorrow as long as things look good. They put me on Lamictal and Vimpat, and they went ahead and kept me on Tri for now, because my sodium was in a good place. He plans to cut the Trileptal after the Lamictal and Vimpat settle in. Dilantin is gone.

So I'm feeling pretty encouraged overall.

The seizures are occurring pretty near my pituitary gland, which he said may or may not be significant. He's sending me to an endocrinologist who specializes in pituitary issues. I'll be having another, more detailed MRI of the area to see what's what. Neuro says he doesn't really see any indication that I have anything hormonal going on, but we'll see. I'm still suspicious of hyperthyroid, but we'll see how it all comes out in the wash. He thinks there would be more weight loss, but from my view, weight loss really is an issue for me. I checked in at 101 lbs. Normal for me is 110-15 or so. That seems significant. There is some slight up and down fluctuation, but I haven't been over 106 in at least a year. And my weight still dips pretty low periodically. That, plus my hyperactive digestive tract, really seem significant to me. But, like I said, it will all just depend on how all this works out. We'll see! I just can't wait to get things taken care of and start feeling good again.

One thing I'm pretty sure of, if it's not thyroid, then I have some stomach issues that definitely need to be addressed.
 
Hi Josie,
Good to hear the VEEG picked up some seizures & you will be able to go home.
 
Glad to hear you got results! I was there the full five days, and I felt pretty miserable when they took me off my meds too! I don't think they got anything really from mine :/ The diagnosis sheet said partial seizures, but I don't know if they saw them during that particular visit (I know I had a couple, but I don't know if they picked them up), or if that was from my previous assessments. But I think one more day off of meds and they would've seen more, since the partials were kind of picking up.
 
Josie, it sounds like the vEEG was worth it, now you and the doctor have a better sense of what's going on.

And for others still hoping for a diagnosis -- or already labelled with PNES because of normal EEG -- I think it's worth noting that Josie's doc was thisclose to diagnosing psychogenic seizures. I hope he and other neurologists become more aware of the limitations of the EEG in this regard, and are less hasty to deem symptoms to be psychogenic.
 
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