Had a scary seizure last night, decided to join this forum!

[WhitneyLB]

Hi everybody,

My name is Whitney, I'm 26 and I've been dealing with epilepsy for 14 years. I've been on lamotrigine for quite some time now, and I know by now to take it every single day at the same time. So last night, I took my 600 mg per usual around 9 pm...come 2 am and I'm having a tonic clonic seizure.

I was really freaking out and all I could keep saying is "I don't get it...I took my meds like always!" I ended up wetting the bed and chewing the inside of my mouth pretty good, which I'm no stranger to. Point is - as long as I take my daily dose, I never seize. So now I'm starting to worry about the doseage I take.

Some seizures I shrug off and pick myself back up and say "C'est la vie", and then there are other times in which I feel so scared, overwhelmed, hurting, confused etc etc. Today is one of those days for me. It would be great to hear words of encouragement from people who know exactly what I go through as well!

 

[valeriedl]

I take my meds every day on time but I still have seizures.

I wouldn't shrug the other off because they are seizures. The word 'seizure' doesn't refer to only tonic clonic. How often do you have those types and does your dr know? It could me that the lamictal or the dosage you are on isn't working for you and things might need changed.

Welcome to the web site. You'll get a lot of encouragement and help on here!

 

[N Sperlo]

Hey Whitney.

I stopped taking my medicine and that's caused my first t/c seizure. When I started taking them again, I needed a change in dosage.

Every once in a while you just need a change. I was controlled by 1000 mg of Keppra. Now I need 2000 mg and 150 mg of Vimpat.

No big deal, see?

Welcome btw.

 

[malibu1966]

Hi Whitney

I am also new to the forum, as well as seizures.

My suggestion would be to go see your nerologist and ask to have some more tests done. Also you might need a med change or increase.

This is a great place to share your thoughts. I know the people I have talked with have helped me through tough times which I am greatfull for.

Welcome to the forum

 

[giveasmile]

Hello and welcome!

I'm sorry that this happend but glad you are here.

Like you, sometimes I just accept what happens and wait to see what my Neuro wants to do about... other times I'm just so shaken and caught off guard that I don't know what to think or do.

In bad times I try to tell myself to stay in this very moment. In this moment you are ok. Don't think back to what happened and don't worry about dose changes or what it all means. Distract yourself with good people, or something that you enjoy.

When you feel better, make a call to the Neurologist office. When you are anxious, tell yourself that this call or appointment is when you will think about it and focus on it, that you don't have to do it right in this moment.

 

[Belinda5000]

welcome Whitney,
I was diagnosed 50 years ago and never been controlled.

Only 50% ppl are controlled on meds.It's common to loose control of your bladder after a sz.I'm refractory myself been on 23 different meds.

I accepted my epilepsy as a teen didn't understand it as a kid.I never know when a sz may come but that's life.

 

[Penny]

Some people for some reason just require more meds than others to remain seizure free. I am on 600 mgs lamictal also, along with 1200 mgs trileptal and I just got off 400 mgs Topamax. I am now starting Keppra to go with the other 2 at 1000 mgs. Anything less, I seem to have seizures. Even on the amount I had been on I was. Now that I quit Topamax and am starting keppra hopefully that will help. You just have to find the right combo for your body.

Welcome to the forum!!!

 

[cadsgj]

WhitneyLB, I know so much where you are at. One thing I can say for myself, is that each of my gran mals came about with no change or missing of medication. 90% of the time I deal with complex and simple partials so when the gran mals do hit, I know so much how you are feeling. Fingers crossed for you in feeling better and if you feel too nervous for too long, maybe it would be great to see your neurologist. Fingers crossed!

 

[Zolt]

Hello Whitney,

How long have you been on lamotrigine? I was on it for 6 months and it seemed to be ok, but then my seizures were getting worse, to the point were 2 in a row really beat me up, not the grand mal type, but one were i was awake and twisted like a pretzel. I thought my neck was going to break had it gone on any longer. My doc increase the meds and then i was having shortness of breath. That is when i demanded to be taken off of lamotrigine.

Everyone is different, but that is my experiance.

Personally though, I will not mix drugs, until I run out of individual drugs to try. Bad enough to have one drug messing with you then to have multipy ones.

Cheers

 

[WhitneyLB]

I've been on brand name lamictal for seven years, and for the most part it was seven years of bliss. I had never been happier at that time. Until this past fall, when my insurance company decided to not cover brand name and offered me generic. Feeling like I had no choice, and knowing that lamictal is really the only drug that has been working for me...I jumped on board with the generic. Lamotrigine and I are frenemies. The side effects are more visible, yet my seizures were still controlled...up until Sunday night. I still don't really know what to do.

 

[Cint]

I've been on brand name lamictal for seven years, and for the most part it was seven years of bliss. I had never been happier at that time. Until this past fall, when my insurance company decided to not cover brand name and offered me generic. Feeling like I had no choice, and knowing that lamictal is really the only drug that has been working for me...I jumped on board with the generic. Lamotrigine and I are frenemies. The side effects are more visible, yet my seizures were still controlled...up until Sunday night. I still don't really know what to do.

Welcome Whitney,

Sorry to hear of your breakthrough seizure, tho. After reading this post ^, I want to let you know that sometimes the change from name brand to generic can bring on seizures, from this website:

http://www.epilepsy.com/epilepsy/medicine_summary
Brand vs. generic. Every medicine has a brand and a generic name. The generic usually is cheaper, sometimes by quite a lot. For medicines introduced in recent years, patent (or “market exclusivity”) protection may block the sale of generic versions. A generic medicine usually works well, but it may not generate the same blood levels as does the brand name or an alternative generic medicine. Therefore, with changes of pill manufacturers, the blood levels can change. This may produce breakthrough seizures or side effects. The most important concern when taking generic drugs is to be sure the tablets are made by the same manufacturer for each refill. Switching from one generic manufacturer to another could result in different amount of active drug in each pill. The current author supports the right of the patient and doctor to know about medication substitution and consider whether generic substitution is safe.

For me, it is name brand only.

 

[WhitneyLB]

Thank you so much Cint! Really infomrational!

 

[Ruth]

Hi WhitneyLB, welcome to the forum.
It was made out of love by Bernard for his wife Stacy. That love permeates throughout the whole forum.

I have had seizures since I was 6 years old. I am 70 years old now.
I know how you feel.

It is the merry-go-round, the meds are hit and miss at first. I have had my bouts of status, clonic tonic, atonic, abscence seizures.

I am on Lamictal along with a few other meds. It works for me. I needed extra meds, though. I am also on Keppra, Neurontin, and 2 others. I have a bad memory.

I just kept telling my doctor about my seizures and after about 50 years, they got it so it is not too bad. I still have seizures. The falling down, atonic, seizures are the worse. They have messed up my spinal cord. My doctor is sending me to a neuro surgeon.