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Hello all! I am 27 years old and had my first seizure in January of this year. For two nights prior to my grand mal seizure I could not sleep because when I layed down and closed my eyes I would have Nystagmus to the point that I could not sleep. It just felt like my eyeballs were going back and forth constantly. The second night of that I guess I finally got to sleep then I don't remember anything until I woke up in the hospital that morning. My husband said that I began kicking him in my sleep that morning and he woke up and turned the light on to see that I was having a tonic-clonic seizure. He said that I was biting my tongue and was not breathing well so he opened my airway and held me until I stopped seizing. He said it lasted about 10 to 15 minutes. I am a nurse practitioner so he called the physician I worked for at the time and took me to the ER where my boss met us. I was not aware of any of this and apparently remained post-ictal for several hours after the seizure. Apparently by blood pressure was about 70/30 when I got to the ER and I was still unresponsive so they gave me IV fluids and started me on Dilantin IV. I had a CT and MRI that were both negative. I was admitted and had an EEG that showed some spikes in the right temporoparietal region. We did not have a neurologist in the hospital there so I was discharged after being stabilized and referred to a neurologist in a nearby town.
After seeing the Neurologist he left me on the Dilantin and told me he would repeat an EEG in a month and possibly try taking me off of the dilantin then. I was really scared that he wanted to take me off of it so soon. I saw him a month later and my EEG was normal but he decided he would leave me on the Dilantin for 6 months then try to taper it if another EEG was normal. I told him about the nystagmus I had the night before the seizure and I have been having some episodes of that off and on since then and have noticed that everytime I start having it I will check my dilantin level and it will be low. When I bump my dose up then it goes away. I also will develop migraines if my level is low. My neurologist says that this has nothing to do with my seizure but I am convinced that it does. I have also had a couple of scary episodes where I will suddenly not know where I am even though I am somewhere that is familiar to me. The first time this happened I was driving somewhere I was really familiar with and I knew I should know where I was but just couldn't figure out why I felt lost. I researched this and it seems like this was jamais vu' This caused me to have a panic attack which has never happened to me before. I really think that these are simple partials. I just had my EEG repeated and will see the Neurologist in a couple of weeks but I am scared to let him taper my dilantin down if all of this is going on. He seems to think that my seizure was only stress related and that this other stuff is no big deal. I am hoping to find an epileptologist to talk to before tapering my meds. Sorry for the long post but what do yall think? Have any of you had the nystagmus before? Its really weird and hard to explain.
 
hi and welcome.
I too have the nystagmus. My Neuro, who I am seeing for MS and migraines. I told them about periods of zoning out/blank stare where I rolled my thumbs, and about seeing star showers and other light shows. While checking my eyes, they noticed the nystagmus in the office and ordered and EEG. My showed a grade 2 dysarythymia with spikes in the left partial lobe.

I just posted in the kitchen about migraine and seizure correlation. I am pretty convinced the go hand in hand.

It would be great if you could find an epileptologist.

I wish you the best....keep us posted!
 
Hi, Flicks, and Welcome!

I'm glad you found us in here. It's a great place for support and information.

I've never had the vibrating eyes. But I have had migraines. Bad ones, almost constantly for several years. I've since found out they are definitely related to my seizures. They are postictal (happen after my seizures)

Cint posted a great link in another string:
http://professionals.epilepsy.com/page/migraine.html

On the right hand side of the page there are links to different info about migraines, including more specific info on epilepsy and migraines. Just click.

Hang in there. Seizures are terrible. But you are lucky your doctor caught your seizure so quickly. The quicker they nip seizures in the bud, the higher the probability that after a period of treatment (with meds), you will be seizure free for life.
 
Hi Flicks, welcome to CWE!

If you don't feel ready to go off the Dilantin, be very clear about that with your doc.
You said that you keep checking your Dilantin level and then bumping it up -- be careful not to go up and down and up and down in dosage, that can provoke a seizure, and prevent the body from adapting to a stable Dilantin level. You could ask your doc about trying an extended release version of Dilantin, which could help even your levels out. If you and your doctor eventually decide to taper off it, the process should be very slow to avoid provoking a seizure.

Just a though: Nystagmus has been linked to a magnesium deficiency. Since magnesium plays a role in seizure control, you might want to look into the possibility of a nutritional deficiency. The fact that your blood pressure was so low after your first seizure suggests that you were quite dehydrated as well, so perhaps that was a contributing trigger.

Best,
Nakamova
 
Never had the eye problem, but I definately have the "lost" feelings! I can be in my own house and not remember what I will see when I walk out of a room. Really strange. I get it driving too. I will be at an intersection that I have been at a thousand times, and all of a sudden not knowing which way to turn, or even where it is that I am going. When that happens, I try to just pull over and wait it out. It doesn't usually take long, mostly just flashes, but I know what you mean! Welcome to the site. I know you will gain knowledge and comfort :hello:
 
Flicks,

Question: Do you not know where you are, or is it that you know where you are supposed to be, but you don't recognize anything?

If you don't know where you are, it could be a side effect of the meds or postictal confusion.

If you know where you are but you don't recognize something (the location around you, or your husband, or your dog, etc.) then it may be a simple partial seizure originating in the temporal lobe. It's called Jaimas Vu. It's the opposite of Deja Vu.
 
Endless when that happens it is that I know where I am but I don't recognize anything. I really think that it is a simple partial. I am getting an appointment with an epileptologist soon I hope. I called them and got my records faxed over. I am hoping that if I need to stay on a medication that I can change to something other than Dilantin. Do any of you have any experience with epileptic medications an pregnancy? I do not have children yet and hope to soon. I work in internal medicine so I don't deal with pregnant women much lol. It looks like keppra is the safest in pregnancy.
 
Hi, Flicks,

I've never taken AED's during pregnancy, but I thought I'd pass this along.

There is a registry for pregnant women who are on AEDs. The purpose is to research the effects of a long list of AEDs to see which is safest for a baby's health.

http://www2.massgeneral.org/aed/

Here are a couple of articles on AEDs and pregnancy:
http://www.neurology.org/cgi/content/full/71/14/e32 (gives odds of malformation, looks like from this carbamazepine is the safest)
http://professionals.epilepsy.com/page/treatment_aeds.html
 
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Well I'm on Keppra, so I guess I can get pregnant (:roflmao:) Just wanted to add some levity to the topic.
 
Hi Flicks -- the newer AED meds (Keppra, Lamictal, Neurontin) are generally safer in pregnancy than older ones like Dilantin. A number of folks have had healthy pregnancies and children while on these AEDs. In all cases it's very important to be taking Folic Acid, to prevent developmental issues that can happen in the first trimester. There's more great info here:

http://www.coping-with-epilepsy.com/forums/f42/if-youre-thinking-getting-pregnant-9721/
 
I am happy to say that you all inspired me to be more proactive about my care. I have been tired of my neurologist being dismissive of my complaints. I spoke with my PCP who I also work with today and explained all of my recent symptoms to him like my nystagmus and jamais vu episodes. He spent a long time listening to me and agrees that these are simple partials. He is going to start me on Keppra while titrating off of the Dilantin. I feel so much more comfortable with this and feel like somebody is listening to me and believing what I am saying! I hope this helps my symptoms. Thank you all for your advice!
 
welcome to the site flicks, I understand getting the day-lights scared out of you when a doctor says "i'm gonna take you off your meds" I was about 14y/o and a year removed from my last seizure at that point(that doctor was so busy), he would then look at my last eeg.

my mom who's an LPN went though 3 pregnancy's while on Dilantin and it seems as though all 3 of my older brothers came out just fine, she went seizure for a while and after 10 years her and her doctor desided to take her off the Dilantin(around 1982), shes been back on it since about 2001.

if the Dilantin is helping don't change a thing, just be careful.... I was told by my nero doctor that when I become pregnant I will have to be seen by her every month to make sure the levels are good.

hope I was able to help some. take care and stay safe ~Sha(aka cher)~
 
welcome flicks! Keppra is one of the safest meds to take while pregnant but I'm off mine since i found out i was pregnant. I'm also convinced migraines and seizures go hand in hand. My neurologist all while i was growing up told me it was normal for someone who had seizures to have migraines. And I'm glad you found this site the people here are awesome and everyone really supports everyone. Here your never alone in your journey.
 
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