Question

[davidmc]

I'm having a 3 day ambulatory EEG in November.
I am going to phone the hospital tomorrow and ask them about coming off the Topamax, not much point in having the test if I'm not having seizures is there? lol

Anyway, a trigger for me is diet drinks, stuff with aspartame and some other sweetners in it basically.
So I am planning on getting plenty of Diet coke and food stuff with aspartame in it to make sure I have a seizure when I have the test (will have more than one if I do that). My seizures are simple partial seizures. As my body obviously doesn't agree with aspartame, would this be ok to do temporarily for four days (the day before the start and during the three days of the test)?
If I do this, I will most likely get one seizure straight after the other as that has happened before on diet drinks. But it also happened almost daily until few months ago (pre medication) when my seizures got worse.
does anyone have any advice? Sorry for having so many questions, just want to be prepared.

 

[Endless]

I'm glad you are calling the hospital about coming off the topamax. The hospital = your neurologist, right? That's a decision you shouldn't make alone.

I'm a little concerned that you are going to guzzle diet drinks and go off your meds at the same time. It will increase your chances of having a seizure, but it could also cause bigger ones. I understand your need to have a seizure during the test. I wish I had brought triggers with me when I had mine (inpatient). Just please be careful, and don't drive for a day or so before, during, and a few days after your test just in case. In other words, make sure you are back to near normal first.

 

[davidmc]

I'm glad you are calling the hospital about coming off the topamax. The hospital = your neurologist, right? That's a decision you shouldn't make alone.

I'm a little concerned that you are going to guzzle diet drinks and go off your meds at the same time. It will increase your chances of having a seizure, but it could also cause bigger ones. I understand your need to have a seizure during the test. I wish I had brought triggers with me when I had mine (inpatient). Just please be careful, and don't drive for a day or so before, during, and a few days after your test just in case. In other words, make sure you are back to near normal first.

I'm not sure if I will be able to contact the neurologist, but the number on my letter is for the department that will be doing the test so I figured if I can't get him at least somebody else may know. If not, I have an appointment with another neurologist soon, so I could ask his advice.

When I had an EEG test when I wasn't on any medication, it was on one of the rare days when I didn't have any seizures. The neurologists (3 in total) actually said to buy some Diet Coke from the shop in the hospital as they could get a test quickly that day. Unfortunately, my partial seizures don't usually happen whilst lying down or staying still, both of what were required for the test and nothing showed up on that test. They didn't give me any medication or anything after it or any advice, they were happy for me to go home having the partial seizures.

 

[davidmc]

Update: The neurologists say I should stay on the Topamax for the test. How will this help if the Topamax stops me getting the partial seizures? Wouldn't the test then be pointless?

What I find funny is how none of the neurologists wanted me to try AEDs, they wouldn't let me and didn't reccomend it. Then when I find a way my GP can prescribe one (headaches which was true I did get the headaches), they all want me to stay on the AEDs!!!

Oh forgot to say, I don't drive. I do cycle though but would not be cycling whilst I was getting the partial seizures.

 

[momof3boys]

When I had my VEEG done in March, I was told to take all of my medications proir to being admited to the hospital. I was told to be at the hospital by around 8am If I recall right... and because I take my medications at around 10am and 10pm, I didnt take my medications before going. But after getting hooked up, and my dr coming in, he said from then on out, i would be on NO medications the entire time they were doing the VEEG. He could change his mind and take you off your medication(s) once youre hooked up and ready to go. I was off all medications for 4 days, then put back on the keppra the night before I was released the next day.

 

[Aicila]

I was also taken off my meds when I was admitted for my VEEG. When I checked in they took my meds from me and gave them to me that morning and then stopped them after that, trying to induce a siezure.

 

[momof3boys]

I was also taken off my meds when I was admitted for my VEEG. When I checked in they took my meds from me and gave them to me that morning and then stopped them after that, trying to induce a siezure.

They did the same thing for me too. I had to bring all medications I was taking, they put them into the computer, and took them from me til I was released. The one medication they screwed up on though was my Glucophage XR which I use to treat my Polycystic Ovarian Syndrome. Instead of giving me that, they gave me the metformin, (generic) which i tried before and had a very bad reaction to it. Little did I know they were giving me that, til the second day I was there, complaining of really bad "bathroom" problems. Thats when I found out through a nurse they were giving me the generic version. They didnt have the brand name, so they had to get the pills I needed from my bottle I brought with me. Thats the only thing I wish those nurses did RIGHT! I even told them when they were hooking me up and typing in all this information, that I couldnt take the generic due to the bad reaction. I wasnt a happy camper!

 

[davidmc]

Thanks for the replies. I won't actually be staying in hospital, i will be hooked up to some type of portabe machine (ambulatory EEG), and then go home and return each day to have it checked and what not, so there will be no video.