Sleep deprived EEG today. Worrried about EEG coming out clean for the second time. :(

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J

JustAnotherName

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Hey, y'all.

I had my second EEG in 3 weeks today. My epileptologist told me to stay up the night before, and I made it 24 hours no sleep, along with skipping my morning and evening doses of medicine the night before.

I guess I'm just paranoid that it will come back clean again after putting myself through utter hell with staying up all night. I literally dozed off ONCE, and it was only for a couple of seconds before my body twitched and I woke up again.

I'm so worried that I'll do a ton of EEGs and they'll all come back clean and then my family and boyfriend won't take my seizures seriously or something. Regardless, my doctor is changing my meds to Keppra (from Tegretol 400mg/day). I just want to be taken seriously is all. I don't think people understand having these smaller seizures and that my one grand mal was not all that I've been having.

It's just stressful and I'm tired, so tired. I got home and managed 2.5 hours of sleep but decided to get up and then just go to bed at a decent hour. I'm running on pure willpower at this point.

Ugh. Frustrating.

The good thing is that I know that my epileptologist will take me seriously even if the EEG is clean again. She knows I've got a seizure problem. It's my family I'm worried about, I guess.
 
*Hugs* Hang in there. I had two clean EEGs before I had one come back abnormal, so try not to be discouraged if it comes back clean. It's good that your epileptologist is taking you seriously. Have you had any family come to the appointment with you? Maybe they would take it more seriously if they went along.
 
jemsister said:
*Hugs* Hang in there. I had two clean EEGs before I had one come back abnormal, so try not to be discouraged if it comes back clean. It's good that your epileptologist is taking you seriously. Have you had any family come to the appointment with you? Maybe they would take it more seriously if they went along.
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Thanks for the hugs. :flowers:

My grandmother did come along to the last appointment and she really was glad to get to talk to the doctor. She is taking it seriously. I guess I just worry too much. Today my gran called back after my EEG and asked me if I thought I "might have a tumor." That also set me a bit on edge. I know I don't have a tumor. I've been having seizures (well, one complex-partial in 2009) and auras while on meds (though I didn't know them as auras until recently) for the last 3 years and have not experienced anything that would make me think "Tumor!"

I guess I'm just frustrated. She was saying, "Well, why don't you just ask your doctor if that could be it!" I'm like, I think she would be rushing me to MRI (which she hasn't) if she thought it was a tumor growth. My doc has told me not to worry about an MRI. (I have 2 shunts, so it has caused some trouble with using the MRI machine. They need to know exactly what types I have, down to the serial number.)

Anyway, it's just stressing me out.
 
Oh, that's interesting--I think they routinely order an MRI for epilepsy diagnosis. If they don't plan to do one now, do they plan to try and make it happen down the road? Or do the shunts just make MRI impossible altogether?
 
jemsister said:
Oh, that's interesting--I think they routinely order an MRI for epilepsy diagnosis. If they don't plan to do one now, do they plan to try and make it happen down the road? Or do the shunts just make MRI impossible altogether?
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They definitely plan to do one. She's trying to get the information for my second shunt. It's not that it isn't in the pipeline, it's just been such a stressful thing trying to get the information. Also, I graduate December 15 and my epileptologist won't be able to treat me after that. (She's at the student clinic.) So, though it's a shame, as I really do like her, we're trying to get things rolling as quickly as possible.

I think I should have an MRI pretty soon. It's a work in progress. The problem is, if a shunt is programmable (which mine are not, as they were placed before such a thing existed), the machine could turn my brain to mush, for lack of a better explanation. It's important that they have the shunt types documented.

But I hope we can get one in before I graduate. If not, she's going to refer me to an epileptologist (hopefully!) down in my hometown and we'll go from there.
 
Ack! Brain to mush bad! D= I hope they get everything squared away before the 15th! The deadline can't help matters where stress is concerned. =/ I hope that whoever she refers you is awesome!
 
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