Just diagnosed with seizure disorder..pregnant and have questions

[deikkena]

For what it is worth.. my daughter was on it for a while, building up to therapeutic dose and she was losing weight. Don't take that as research but we both noticed it. She had to stop due to side effects such as severe muscle aches, fever, sore throat.
I have found this site to be helpful to see what others are experiencing with new meds:
http://www.askapatient.com/
It is a lot to take in, but you can get an overview.

Neat website! Thanks for the link!

 

[deikkena]

I have found Lamcital to be weight neutral, but I have heard others say they have lost weight on it. Most of the time your system with get used to the med. and any weight loss will stop with time.
Hang in there.

Any other time I wouldn't be concerned with just about any weight loss. I just don't want to lose too much weight during pregnancy, especially in these last weeks where I should be gaining!

 

[deikkena]

I was diagnosed with Epilepsy as a child (had terrible grand-mal seizures) and put on Dilantin for 5 years and eventually grew out of it. When I was 20 I got married and had a beautiful daughter and the E returned but I didn't know that is what it was until a while ago. Now I'm 31 and thru all the reading and research I know that it's been with me since I've had my baby. I've had probably 40 unexplained "events" in my sleep, from cuts to bruises to waking up on the floor but epilespy never crossed my mind until last Feb when I had 2 seizures @ my in-laws. Went to the dr. and they ran tests & said that the E was back. I was put on Depakote but had bad reaction after 2 mos. so switched to Topamax and have had 3 seizures since. I am currently w/o insurance cause hubby took better job so when the new insurance takes effect I'm gonna try to change meds. That's my story! My daughter, thank God, didn't have E, but a mild tic disorder and she takes a daily magnesium supplement and the tics are all but gone

Wow! That is some story for sure! I hope the insurance kicks in ASAP and you find the right medication for you very soon.

I'm glad your daughter doesn't have E. What exactly are "tics"?

 

[deikkena]

Have you considered magnesium for yourself?
There is some great information here to read:
http://www.coping-with-epilepsy.com/forums/f22/magnesium-1300/

Per my midwife's recommendation (before I ever even saw the neurologist), I was put on a magnesium supplement to help stop "threatened preterm labor" a few weeks ago. I managed to get the contractions to ease up after a few days so I never had to go to the ER or anything, but still take the magnesium (as well as a few other things) daily.

 

[jkj1995]

"Tics" are involuntary, uncontrollable movements, kinda like Tourettes but without the noises, if that makes any sense. She started with forcefully blinking her eyes alot, then brushing her hair off her shoulder constantly, then constant throat clearing but without a cold (she explained it like a feather in the throat), then shaking her head side to side all the time as if saying no then it changed to up and down, then constant wide opening of her jaw but without yawning. I took her to a pediatric neuro who said to put her on ADHD meds but in the long run (her teen years) the meds would probably worsen the condition so I tried homeopathic route. Magnesium citrate liquid and all natural vitamins, cut out all caffine and as much artificial coloring (red 40, ect) as possible. Its been about 6 weeks and except at Halloween (she's an 11 year old kid, we had to let her have some candy ) you could hardly tell.
Her dad had it as a kid and grew out of it as a teen when we met. (We're high school sweeties, been 2-gether 16 years -so I'm confident she will grow out of it. Dr. said puberty brings it on)

 

[deikkena]

"Tics" are involuntary, uncontrollable movements, kinda like Tourettes but without the noises, if that makes any sense. She started with forcefully blinking her eyes alot, then brushing her hair off her shoulder constantly, then constant throat clearing but without a cold (she explained it like a feather in the throat), then shaking her head side to side all the time as if saying no then it changed to up and down, then constant wide opening of her jaw but without yawning. I took her to a pediatric neuro who said to put her on ADHD meds but in the long run (her teen years) the meds would probably worsen the condition so I tried homeopathic route. Magnesium citrate liquid and all natural vitamins, cut out all caffine and as much artificial coloring (red 40, ect) as possible. Its been about 6 weeks and except at Halloween (she's an 11 year old kid, we had to let her have some candy ) you could hardly tell.
Her dad had it as a kid and grew out of it as a teen when we met. (We're high school sweeties, been 2-gether 16 years -so I'm confident she will grow out of it. Dr. said puberty brings it on)

How great that the homeopathic route works better. I much prefer natural remedies when I know about them and can try them (as with any remedies, there are some that you just shouldn't use while pregnant or breastfeeding).

 

[deikkena]

The past couple of weeks have been crazy...

Just wanted to post an update on me...

Seizure-wise.....I'm now 31 weeks and a few days pregnant and my Lamictal dose just doubled to 50 mgs/day last night. I've had two known seizures since starting the meds. One was just a few nights ago and for the first time, hubby got to see it. He wasn't really freaked out or anything because my seizures don't manifest in dramatic ways, but he did notice that it seemed like I had just spaced out for a bit, then just as he turned away, my head dropped for a few seconds, then I shook it off. I don't lose consciousness during these episodes. I see the neurologist on the 28th.

Pregnancy-wise.....Last Sunday morning (in the wee hours of the morning), my hubby had to rush me to the ER due to consistent/mildly painful contractions and such. I was monitored for a while and given IV fluids, plus 3 injections of Terbutaline (one shot every 15 minutes), then was started on 5 mgs of the same drug every 6 hours to help stop contractions. I've been on it since. I've also since been released from work (so I'm on temporary disability until the baby is born) and put on mandatory bedrest.

This past week was okay with the exception of having a little bit of cabin fever and going a little stir crazy. The side effects of the Terbutaline aren't exactly pleasant, but I've had to deal with worse. Then late this morning, I had to go back to the ER due to spotting (sorry for any TMI guys!) and consistent lower back pain/contractions. Was monitored for a little while again, but at least didn't have to get an IV or other meds and go through the whole ordeal. Everything looked good and baby was doing excellent.

I'm just wondering if anyone here has had any experience with being on both Lamictal and Terbutaline? I see a new OB/GYN (been with an independent midwife for the majority of this pregnancy) on Wednesday, so of course I'll be asking him these same questions. But, I know that it helps to talk to others who've actually experienced something similar.

Thanks!

 

[KAM]

Hi everyone. I'm very new to all of this, so please bear with me if I don't know all the lingo and such.

My name is Nicole, I'm 27 years old and currently 29 weeks pregnant with my second child. I was diagnosed just this past Tuesday (10/30/07) as having a seizure disorder. I have partial seizures and have been having them for a good 6 or 7 years, but had never been diagnosed because I didn't realize that's what was happening to me (and therefore never saw a doctor about them).

My neurologist wants me to start taking Lamictal, and because this is all so new to me, and I only know one person who deals with anything similar (except her condition is much more severe), I'm very scared and reluctant to take this medication. I very much wish to breastfeed as it's something very important to me, but I've found little data that shows that taking this medication during pregnancy and breastfeeding is okay.

I am planning on having an at home VBAC (vaginal birth after cesarean), and it was my seizure symptoms that prompted my midwife to require me to see a neurologist in the first place. I had an EEG and MRIs almost two weeks ago. The EEG showed abnormalities, and the neurologist is ordering a second MRI (this time with color contrast) to rule out a "dark area" that showed up the first time around. She thinks this dark area (showed up on 2 different cross-sections of the MRI on the right side) is probably just a venous angioma and nothing to worry about right now, but she just wants to be sure.

I guess I'm just really nervous and confused and frustrated because the timing for all of this is terrible. My neurologist wants me to start taking the meds now to get my body used to it and to prevent a possible grand mal seizure (which I've never experienced before) during labor and delivery. But again, such little data and none of it I've seen says anything about the long-term effects of this on a fetus or child later in life. I suppose this drug is just too new?

I could really use some advice and reassurance and would greatly appreciate all positive comments and suggestions. Thank you.

Hi Deikkena,

I am new to this group as well. I can not give any information on Lamictal during pregnancy, however, while I was pregnant with twins, I took Neurontin and my kids are are beautiful and healthy. Massachusetts General Hospital is doing a case study and follows my kids development for taking Neurontin through pregnancy. I did breastfeed for about two weeks after giving birth and had to return to work so I stopped. As for the birth of the twins, my daughter was born first vaginal birth, and her brother was born four and a half hours later stat c-section. I know how you feel, stay positive, I'll try to help in any way.

 

[RobinN]

HI KAM... Welcome.
Why don't you start a new thread and tell us your story. I am sure it will help others that are stopping by to peek in.

 

[Tate]

Hi Deikkena

Firstly welcome to the forum..... you will find that its a great place with wonderful sincere people willing to help at anyrime and give valuable information. and everyone is very supportive.

I am 29 years old and 3 1/2 years ago fell pregnant, It wasnt not planned IUD failed... I had lengthy talks with my doctors about my pregnancy and my medications.... I was on lamictal, my doctor said there hasnt been enough conclusive studies done on lamictal being used in pregnancy,..... his way of looking at it was to weigh the risks and the benefits.... at that stage I was controlled on lamictal ( well atleast for me)... and as I have severe tonic clonics which also tend to be quite long... and seens I was the most stable in along time he wanted me to continue instead of trying another medication that had been studied and going back to having so many severe tonic clonics

I was scared to take meds in my pregnancy but having many tonic clonics the way I have them was also a risk...
I was unable to carry and ended up having a miscarrige.... BUT is was NOTHING AT ALL to do with taking medication it was conclusivly put down to other reasonanings.... which did not relate any way shape or form to E or meds.

I recently had resection surgery where my right temple lobe and some of my frontal lobe were removed the wonderful team that I had during that time would like me to go see them If I am going to consider wanting to fall pregnant, so i will be the best prepared... I have alot of faith in their abilities and the decisions they would make....

I know of many people who have trouble free pregnancies whilst on meds for E...it is scary...but just have to try to stay positive and as less stressed as possible easier said then done I know...

Deikkena, I wish you the best for the rest of your pregnancy and a blessed and happy future...


Take care all
Tate xx

 

[alivenwell]

During my pregnancy, my neuro wanted me to start on Mysoline which metabolizes into phenobarbitol. The risk of Mysoline was unknown at that time. I took the safest one: phenobarbitol instead because the risk was minimized. As my pregnancy advanced, I had to constantly get blood tests and increase the phenobarb. It's my understanding that the Mysoline metabolizes into phenobarb. My son was born via c-section. He was normal with no cleft palate/lip. Lamictal was started immediately after my son was born.
I did not breast feed him. The drug(s) go through your system.
I was advised that a seizure is actually more dangerous than some of the drugs due to injury to the fetus. This is a tough decision. I ate really healthy stuff, totally laid off caffeine and put my son in a day care while my system adjusted to new meds, a new way of life, and went back to work.

 

[wendyleigh25]

Vagus Nerve Stimulater

Hi! Sorry to have to meet up with you here on this forum but I do have some information. Also it is a really really small world. My sister lives in league city and I live in Fredericksburg Texas.
I wanted badly to have a VBAC with a midwife. I was not diagnosed until after my first pregnancy. I started having grand mal seizures when my little boy was 5 months old!!! He is ten months old now so I am very new to this all. I am also very big on breastfeeding. I got to bf until he was 5 mo old (when all this happened) and I do contribute me bfdging him to his health. He is super healthy! Anyhow I was adamant on not getting on meds bc I am so scared of all the effects they may have on my little one then I heard about this new thing -vagus nerve stimulater. Its not real researched either during pregnancy because its so new but it cant be too bad because its not systemic (meaning does not run through your blood). You should research it. Cyberonics makes it. I went through he!! and back to get this device put in. I really did. But these grand mal's were really taking a toll on my body. I have had one since I have had the VNS in. I fell pretty hard and hit my head so this one has been the worst by far. Anyhow I hope I helped. What part of houston are you from??? It does not matter what type of seizure disorder you have its all very difficult because it all messes with your brain. I have the kind that you stare (partial I guess) myoclonic (jerking of extremities) and then full blown grand mal. I happen to have them all. Mine is genetic which is one reason I have them all. Lucky me. Good luck to you. We want to have another baby sooooooooooo soooooooooooo bad. I am just not sure when to. We also have infertility problems which makes this all so much worse. Sometimes I hate my life. I just need to keep in mind the positive things!
Wendy

 

[RobinN]

Hi Wendy
Welcome to CWE. You are right... the positives are what need to be focused on.
My daughter at the age of 16 is having seizures. Her cycle is what brought them on.
Frustrating to no end.
I am glad that you have found something to work for you.
We are still searching.

 

[Bernard]

Hi Wendy, welcome to the forum. :hello:

... -vagus nerve stimulater. Its not real researched either during pregnancy because its so new but it cant be too bad because its not systemic (meaning does not run through your blood).

I'm glad you had a positive experience with the VNS. It doesn't work for everyone though. It has a lower efficacy rate than many other alternatives (see chart in my signature for more info).

 

[Birdbomb]

Hmmmmm......VNS.....now where have I heard about that?