Greetings! May I ask for some advice?

[skyfire322]

Hello! Before I go any further, I just want to say that I'm very glad I found this forum, and I apologize in advance for the long post.

Here's my history: I was diagnosed with epilepsy back in 2001 when I was 15. At first, doctors said I had idiopathic (genetic) epilepsy, as my sister had seizures constantly. After a year or so, they said that I had psychogenic seizures. I was prescribed both Lamictal and Dilantin, but that did absolutely nothing, so my neurologist switched me to Lamictal XR, and it has worked like a charm for the most part.

About a week ago, I had a pretty bad (but not grand mal) seizure, and was sent to the ER. It was my first real seizure in about three years! The doctor prescribed a week supply of Ativan to calm my nerves, and said that it was probably an anxiety attack. Then two days ago, I had yet another one, still not a grand mal. All of my blood tests and my MRI came back normal, so the ER doctor gave an order for a sleep deprived EEG which is scheduled for tomorrow.

I'm quite nervous about this for some reason. It's not like I want them to find anything wrong, but if the results come back normal, I'll feel really confused and even a little down, because I just want to get to the bottom of it.

 

[momof3boys]

Im glad you found us!

I am a female who has been dx'd with epilepsy as an infant. My previous Neuro did a VEEG and found abnormal activity on my EEG, but then said some of the seizures he saw me having on the video didnt register on the EEG. He said they were psychogenic seizures. He even referred me to a psych dr, who when I went to, said that the seizures are not psychogenic, because the neuro had put me back on the Keppra XR due to the abnormal activity he saw on the EEG and the seizures stopped. I was told what he saw on the video that didnt register on the EEG was seizures that were too deep to be picked up, and I didnt need to go back to the psych dr because they were not occuring. My neuro did try me on Lamictal and used the reason for it being to treat my partial seizures. LIttle did I know I was going to have a severe reaction to the medication, and he gets frustrated and admits his whole intention was to use it to treat anxiety attacks, which Ive never been dx'd with, and never told I had anxiety in my life! It really got me frustrated. Im not seeing that neuro no more and found one that listens to me. This neuro believes the same thing as what I believe... the seizures are too deep in the brain, and the Keppra XR, along with being put on a low dose of Carbatrol now, is holding the seizures.

As for the EEG, the usual EEG's ive had in the past last about 45 minutes to an hour. Its the usual sleep deprived EEG and they make you breath deep, and use lights to get any seizure activity to occur. Ive always had abnormal activity show up on my EEGs in my left temporal lobe area. I wouldnt worry about having it done. Its a pretty easy test they do.

 

[Nakamova]

Hi skyfire322, welcome!

Are you worried about whether the docs will use the EEG results to rule in or rule out an epilepsy diagnosis? This is a tricky point for many CWE members who have been told that their seizures are psychogenic when the EEG turns up negative. At least in some of these cases, the neurologists may well be mistaken -- the EEG can miss seizures that are very brief and/or originate in areas of the brain not well mapped by the EEG sensors. Frontal and temporal lobe seizures can be especially hard to catch, and are often dismissed as anxiety-related symptoms.

I think the fact that the Lamictal XR helped control your symptoms is significant -- that would be unlikely if your seizures were psychogenic in origin. Have you discussed the possibility of increasing the Lamictal dose with your neuro? That might protect you against future breakthrough seizures.

When you had the second of your most recent seizures, were you still taking the Ativan, or had you stopped?

Best,
Nakamova

 

[skyfire322]

Thanks for the advice! It is very appreciated.

Nakamova, they actually prescribed the Ativan to me after the seizure, and I've only taken two because it knocks me cold, and makes me sick. In order to combat those side effects, another doctor prescribed me some Zofran. I'm afraid to take that becase one of the side effects is anxiety! My first appointment with my new neurologist is next week, so I will be talking to him about possible solutions to this, including increased dosage.

Momof3boys, thank you for sharing your experience with me. It helped put my mind at ease!

 

[huskymom]

I have had both normal and abnormal eegs which happens to most of us. I also had the week long video eeg in the hospital. I showed two different types of seizure. Such an over achiever Try not to get to stressed about it. They are painless, other than the fact that you will be really tired since it is sleep deprived! Hang in there. We are all here for you. Let us know what you find out.

 

[RobinN]

I am curios as to why they had you on anti seizure meds if they felt your seizures were psychogenic? In my daughters situation the meds increased her seizure activity. It wasn't until we figured out the brain gut connection that she began to improve her seizure threshold.

 

[skyfire322]

Robin, I'm asking the same question. lol!

I just got back from my SD EEG, and although the tech couldn't give me any details, she said that I definitely have abnormalities. The worst part about it was the strobe right in the face.... I asked for her to turn it off about five times because I was starting to get the aura.

The one thing she noticed was that I was twitching a lot during the nap part. She said that the doctor may just change my dosage, and type of medication, but I won't find out until my appointment next Thursday.

I'll definitely keep you guys in the loop though. Thank you all again for your support! You all rock! :rock:

 

[skyfire322]

Well, a day after the EEG I had two more seizures. This has never happened before, so it makes things very frustrating. While in the ER, the doctor on call spoke to my new neurologist, and they have decided to put me on 500mg of Keppra on top of the 600mg of Lamictal I'm already on. Hopefully I'll be able to get the EEG results before my appointment!