New to Temporal Lobe Epilepsy.. advice on medication?

[manda817]

I am very new to this and terrified. I had an MRI and find the results out tomorrow. They are telling me it is in my temporal Lobe, and I don't know what that means. I have a prescription for Lamictal or Lamotrigine, and am scared to take it. Any advice or words of wisdom for me?

 

[Endless]

Manda,

Welcome to the forum. This is a great place for information and support.

I am so sorry to hear about your seizures. Diagnosis time is really scary. I was when I found out, too. Hopefully as you have time to adjust to your diagnosis and learn more, it will become a lot less scarey.

The temporal lobe is the most common place for seizures to start. It sounds like you lost conciousness during your seizure. Did you get a description of it from someone who saw it?

The seizures that come along with temporal lobe epilepsy are varied and and seem rather strange: feeling, seeing, smelling, and hearing things things that aren't there, deja vu and jamais vu, intense emotions, and a host of other things. Here's a link that describes many of them:

http://www.epilepsyfoundation.org/about/types/syndromes/temporallobe.cfm

Here's a string of posts you may find helpful:
http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

Also, the epilepsy foundation has a great page with descriptions of types of seizures:
http://www.epilepsyfoundation.org/about/types/types/index.cfm

The epilepsy foundation has a ton of info on other topics, too, including treatments and medications.

Lamictal is a medication that helps a lot of people, and they swear by it. It wasn't so great for me because it gave me a rash. I"m sad about that because Lamictal is known as one of the medications that usually leaves your mind relatively sharper than the other meds. Good for a working person.

The best advice I have for you right now is to follow your doctor's instructions EXACTLY when ramping up on the lamictal. If you go too fast you can get some nasty side effects. And if you have any problems with your medication call your doctor and tell him.

The other piece of advice is to read through the old posts in here. They contain a lot of information.

Hang in there. Sometimes the tests, doctors, and meds feel a bit like running a marathon. Pace yourself. I'm hoping that things will even out for you soon and that the lamictal agrees with you.

 

[Nakamova]

Hi Manda --

It probably feels like there are a lot of scary unknowns right now. Believe me, that's normal! The best thing to do is ask a lot of questions. The more well-informed you are, the more proactive you can be about your health. In addition to Endless' suggestions above, It's a good idea to keep a journal where you track not only your seizures, but other aspects of your health as well -- what you eat and when, how you sleep, when you're feeling great, when you're feeling stressed. It's a great way to potentially isolate seizure triggers, as well as seeing if your seizures are being controlled or if they are changing in other ways. And as you start the medication, it's good to keep track of how it makes you feel. If something seems like it might be a side effect, check in here, there are a lot of folks here with experiences of Lamictal who can chime in. (In my case I'm currently on Lamictal, my seizures are controlled, and the side effects are tolerable.)

I hope you feel free to explore this forum -- there's a ton of great info here, and the support and empathy will be unbelievably helpful as you move forward.

Best,
Nakamova

 

[manda817]

Thank you for the feedback! I met with my neuro and he wants me to start on Lamotrigene, but we also talked about Keppra being an option also. I am just so scared to start any medication for this, as I have only has the big knock out seizures twice, once in my sleep, once awake. I get the auras and all that which I couldn't explain for a while. Now I know those are seizures also, but I have such a hard time with the idea of meds, because I am "functional" for the most part. I am wondering if it is hormone related in any way, as the feelings are more intense certain times of the month, and then nothing other times. My Dr said there was no way it was related to hormones at all. I am just struggling to understand the HOW and WHY of all of this. And I am scared to start meds with the thought that this could be brought on my something internal that can be cured with other forms of treatment. I don't want to start drugs and then have the seizures get worse. Fear of the unknown I guess. Thanks for listening to me!

 

[Endless]

Manda,

Oh, man. These docs drive me nuts sometimes.

What you've noticed about seizures being worse some times of the month - that's really valid. What you are seeing is something called "catamenial epilepsy." There is a lot of research supporting your position.

Take a look at this information from the epilepsy foundation:
http://www.epilepsyfoundation.org/living/women/hormones/weihormones.cfm

And if you want to get a little more technical look here:
http://professionals.epilepsy.com/page/catamenial_patterns.html

Your issue might be able to be cured through other means. Maybe not. But it's worth exploring. Have you thought at all about seeing a specialist who might know more? An epi? Is there one in your area? Your neurologist or PCP could give you a referral.

 

[Cint]

Now I know those are seizures also, but I have such a hard time with the idea of meds, because I am "functional" for the most part. I am wondering if it is hormone related in any way, as the feelings are more intense certain times of the month, and then nothing other times. My Dr. said there was no way it was related to hormones at all. I am just struggling to understand the HOW and WHY of all of this. And I am scared to start meds with the thought that this could be brought on my something internal that can be cured with other forms of treatment. I don't want to start drugs and then have the seizures get worse. Fear of the unknown I guess. Thanks for listening to me!

Hi Manda,

Sorry to hear of your seizures. And like Endless, some of these doctors make me crazy, also. I went through this with several docs when I 1st started having seizures years ago. I told them the seizures would happen during certain times of the month, and they told me they weren't related. I would often think BS! When I experienced my 1st TC seizure in the shower and suffered 3rd degree burns, it was that "time of the month". onder: Then in the '90's they finally started saying there is a connection between hormones and epilepsy. Some women experience catamenial seizures. So maybe you need an epileptologist, someone who knows more about epilepsy and hormones.

 

[daisy.girl]

I am very new to this and terrified. I had an MRI and find the results out tomorrow. They are telling me it is in my temporal Lobe, and I don't know what that means. I have a prescription for Lamictal or Lamotrigine, and am scared to take it. Any advice or words of wisdom for me?

Hi Manda,
What did your MRI results show?? Did the neuro go over them with you?

 

[manda817]

My Neurologist says it has nothing to do with hormones, that nothing is causing them to happen, they just do. I saw a 2nd opinion yesterday who presented to me better than the 1st neurologist, but still saying the only thing that will cure me is being on meds. I was planning on starting the medicine Friday, but then last night had ANOTHER seizure while I was sleeping. It woke my husband up, and I remeber all of it, from waking up to him saying my name, thinking I was dreaming about throwing up, to not being able to talk for 1-2 minutes following it. I was able to THINK what I wanted to say, but couldn't formulate words. MRI was normal, EEG was abnormal, but no answers as to WHY. I have an appt at UW Epilepsy center next week, hoping to find someone to help look into the cause.

 

[huskymom]

Hi Manda!

I have nocturnal seizures too! They are pretty weird. I know exactly how you feel with knowing what you want to say, but not being able to say it. My husband now knows to just wait patiently and I will be able to get it out after a couple of minutes. I was a little scared to start meds too, but I have had no side effects after getting to the dose that the doc wanted. Of course there are a few dizzy days while getting up to that level, but you do it in small amounts. I have had no real trouble about staying "functional". A few days missed here and there, but nothing that a caring boss will give me trouble about. I hope you start to feel better soon. Everyone here is great! Just come on whenever you need to!