Just diagnosed - and I'm 6 months pregnant!

[ferne]

I'm totally new to this, but I have been researching everything I can for the past 10 days.
I will try to make this a shortened version
I am 6 months pregnant with my 5th baby. On Feb 21st I was going through my normal routines with my kiddos (we homeschool) when I lost part of my vision in my right eye and felt really dizzy. I thought it was blood sugar, so I made myself a snack. Then I felt really sick to my stomach and totally spacey. I called my husband and was almost unable to communicate to him at all. I proceeded to have crazy symptoms like my right arm and face getting tingly and I couldn't really comprehend anything my husband was saying and couldn't remember words that usually come easily - including my doctor's name. Then all I wanted to do was sleep. Afraid I was having a stroke, my hubby rushed me to the ER. They listened to the baby, my heart, did blood sugar levels and checked for a UTI - then sent me home and said I should drink some more water. Um... ok?
The next day, my OB sent me directly to the Neurologist (within hours of her learning of the situation). He scheduled me for every test under the sun that you can do on a pregnant lady - Ultra sounds of the carotid arteries, my leg arteries, echocardiogram, MRI, EEG, and took 20+ viles of blood!
I fully expected to hear that I had some kind of a pregnancy related thick blood disorder that caused a TIA - I thought the EEG & MRI was total overkill!
Well - wouldn't you know that every single test came back completely normal EXCEPT for the EEG.
He called me right away because he was very concerned at the amount of Theta activity they were seeing in my left temporal lobes. He told me not to drive and have someone take me to see him the next morning.
Well, after an hour long talk with him - we discovered that I have been experiencing seizures my entire life. What I interrupted as mild panic attacks, were actually temporal lobe seizures. I also have become increasing spacey and forgetful - but I've always blamed it on having a big family (having 5 kids in 10 years is BOUND to make you a little spacey and forgetful).
Of course, I am like most uneducated Americans - I never knew there were seizures other than the Grand Mal type. The simple partial seizures that I have been experiencing was a completely new paradigm!
Anyways... He wants to put me on lomictal (spelling?) right away, but I made him wait at least until I see a perinatologist to discuss the consequences.
I understand that it is safe for pregnancy. My concern is that people who take this drug during pregnancy were taking it long before pregnancy. They were able to have their body adjust to it and adjust the dosage to meet their own metabolism before embarking on a pregnancy. I am VERY concerned allowing my body to be a guinea pig while I'm growing a baby...
Has anyone had an experience similar? Has anyone taken the "no drug" route? I am reading "Epilepsy: A New Approach" and am wondering if I should first try diet and life changes before starting any medication treatment.
Right now, my head is still spinning and I am trying to wrap my mind around this and I would love some input!
Thank you for listening/reading...

 

[Nakamova]

Hi ferne, welcome to CWE!

When it comes to meds and pregnancy, there are pros and cons on both sides, and success stories both ways. I think you are smart to meet with a perinatologist, and you should also make sure your OB-GYN is on board and in communication with your neurologist. Things to factor in are the kinds of seizures you're having, what your history is like in responding to meds, how stress-free your pregnancy can continue to be, etc.

Hormones -- specifically high estrogen or low progesterone -- can play a big role as a seizure trigger, so pregnancy can be a vulnerable time for someone with a low seizure threshold. Lamictal has a decent track record, and all of the AEDs are less likely to affect the fetus if they are taken AFTER the first trimester. However, the tricky thing is that estrogen increases the metabolism of Lamictal so it can be tough to get the dosing right. As estrogen levels gradually rise over the course of pregnancy, the clearance of lamotrigine may increase by as much as 200 to 300 percent. Adding to the complication is that Lamictal levels will then rise post-delivery when estrogen levels start to go down. And, there is no standard target blood level for Lamictal. Since you have no dosing history with the med, that means there are a lot of unknowns.

I expect some of the mothers with epilepsy will chime in. And you can search for more info on specific topics using the "Search" tab at the top. The book you mention is a great place to start as well, and has great tips on ways to be proactive with your health.

Best,
Nakamova

 

[Endless]

Hi, Ferne,

Welcome to CWE. And congratulations on your happy news about the baby!

Sorry about your diagnosis of epilepsy, though. If you wonder about any drug, including the possible effects on the baby, you can look it up on the website below.
http://www.epilepsy.com/epilepsy/seizure_medicines

• After you click on your drug, look on the right-hand side of the page for a menu/box of things you'd want to know about the drug.
• Scroll down to "If a woman takes _______ during pregnancy, will it hurt the baby?: Basic"

Here's the specific info on Lamictal:
http://www.epilepsy.com/medications/b_lamictal_pregnancy
http://professionals.epilepsy.com/medications/p_lamictal_pregnancy.html

It's not all gloom and doom - Lamictal is considered one of the safer drugs during pregnancy. And Nakamova is right about monitoring blood levels and adjusting accordingly.
http://www.epilepsyfoundation.org/living/women/wei/familyplanning.cfm

You are very smart bringing in the required specialists. You are already a very good mother, and are doing the right things for your baby.

 

[KellyD]

Hello, I'm one of the mums that took lamictal during pregnancy. I was diagnosed at 27 (now 30) so was a bit surprised as well. The dr switched me onto lamictal as this is the safest for pregnancy and was only on it a couple of months when i fell pregnant. The drs will need to weigh up the risks of the medication to the baby compared with the risks to yourself and the baby from the seizures ie. if you do have a grand mal or if your breathing is impaired. The dr explained to me that in every pregnancy where there is no meds or risk factors the chance of their being a problem with the baby is 1 in 100, with lamictal it is 2 in 100. Thankfully our son is absolutely fine and was not affected by the lamictal and I was able to breastfeed as well while taking the meds. Best of luck with everything, keep us posted.

 

[tase37]

Congratulations I have a 3 month old girl
Can't help you but wanted to say a BIG hello from Finland

 

[ferne]

Thank you!

It's so nice to have a community of people who know what I'm going though!

I've never had a grandmal or anything even close to one. The doctor is concerned that my simple partials might progress to that, though.
Interestingly... I was asked if there was a family history of seizures - and I said no. Well, as my family is hearing about this, I am learning that is NOT the case! Both my father and his mother (my grandmother) had episodes of jamais vu. My grandmother actually lost an entire day, she didn't recognize her husband or their house or anything! After a a few hours it came back little by little but it took a few days to completely recover.
Would that kind of thing be hereditary

 

[Nakamova]

It can be hereditary, but there isn't any definitive way to predict how or if it will show up -- it can skip a generation, or show up in slightly different ways. I think the genetic part is a lowered seizure threshold, but there still may be required some particular trigger (which could be stress or an infection or a nutritional imbalance) to set things off.

 

[nancy12]

lamictol is one of the many meds i tryed, it is one out of three that have worked for me to control my seizures but also i really wanted to comment on this because you said the "no drug route"

please take a safe medecine. do not put yourself at risk like that. i was taken off my meds for a week and i expierienced my first grand mol which took my life for over a minute.

thats not something you want to risk.
:e: